Archive of Special Education Message Board Folder ADD/ADHD Diagnosis and Treatment August 5, 1995 - October 3, 1996 FILE NAME: adddxtx1.txt 398 Messages - 106 Pages SUBJECT: NEW FOLDER Date: 95-08-05 10:12:13 edt FROM: Ratatat This is a NEW merged folder. Recent messages FROM: ADHD/Social Skills Training ADD have been moved to this new merged folder. All previous messages have been archived into the special education library for your use. Please post all questions and concerns about ADD/ADHD Diagnosis and Treatment here. Thank you. Ratatat, Assistant Host, Special Education SUBJECT: Moved Messages Date: 95-08-05 10:13:24 edt FROM: Ratatat These messages have been moved from the folder: ADD SUBJECT: Trying not to feel lost... Date: 95-07-30 23:33:28 EDT FROM: LCFitz My 7 year old son who is about to enter 2nd grade was recently diagnosed with AD(H)D. My son began taking 10 mg Ritalin every morning about one month ago. I can't say it solves all his problems, (not that I thought it would), however, we do think we see an improvement since he has begun the medication. From what I observe, however, it seems that he begins to have more problems by early afternoon when, from what I've read, the medication is probably wearing off. He has been doing quite well at day camp (2 days/week), but did have some confrontations with other campers a couple of weeks ago. The incidents happened during less-supervised "transition" times on the playing field, also, notably, during the afternoon. (He has had more success since then, being directed to the art area during these times....). Anyway - could he be going through the so-called "rebound," coming off the meds, in the middle of his camp day? Is this common for a child to take just a morning dose? I have called our doctor but he is on vacation for a few weeks....(great). Since all this is so new to us, I am at a loss as to how to proceed. I was somewhat surprised at being left to wonder by our doctor (who is, by the way, a pediatric neurologist at a highly respected children's hospital) where we would go from here. All he instructed us to do was to keep in touch with him, and now he is on vacation...! I also have a somewhat reserved nature, and don't always ask the questions or push for the answers that I should. Has anyone else out there found that they have had to, for example, ask the doctor for an additional dose of medication for their child or to specifically change the dosage...? Or do you just communicate your observations and concerns to the doctor and he gives his recommedations from there....? I don't want my child on any more medication than necessary, but I also don't want to give him the medication that can help him in the morning but not allow him the same benefit in the afternoons.... I have many more questions, but I'll call it a night for now. I would really appreciate any suggestions. Thanks. Laurie SUBJECT: Re:Trying not to feel lost... Date: 95-07-31 07:11:45 EDT FROM: Ratatat Lots of people have to ask their docs to alter dosages, times of day, etc. I would suggest you keep a log of events so that when you doc is back from vacation you have a valid record for him to review. This will help him to time the medication best, and to correct the dosage as well. Ritalin is a very fast acting medication. It wears off, on average, in about 4 hours. So, yes, you are probably seeing *rebound*. The best solution for rebound is to provide medication as the last dose wears off, and before rebound sets in. Most kids do get some doses throughout the day. Not many only take meds just in the morning, especialy Ritalin. You might ask if you can give him 5mg just before his lunch, and another 5mg just before dinner, and see how that goes. Getting the dose and timing right on the meds takes a lot of fine-tuning, and patience. None of us want to give our children more med than is necessary, but finding the right dose, time of day and medication makes such a difference. It really helps the child be *available* to learn from their environment and take advantage of extra structure. SUBJECT: Moved Messages Date: 95-08-05 10:16:48 edt FROM: Ratatat This messages has been moved from the folder: ADD SUBJECT: Re Getting the right meds Date: 95-08-02 00:53:21 EDT FROM: LTroudy I have an Add child and expalined to the ped. neuro. not only behaviors but also the time of day and what the pattern of his day was like. He rec. Cylert as it does not seem to have the on/off pattern that one sees with Ritalin. I have not seen any of the usual wear off pattern that seems to be so common with kids on Ritalin. I am also an RSP teacher and many of my kids that are on Ritalin I see in the morning and again after lunch and I can ALWAYS tell when they did not get the 2nd dose. I have not had that feeling at all with the Cylert. The Dr. also stated that we would need to possibly try different doses or different medications as they seem to work to differently with each child. Stay with it , as it should all come to gether in the end. SUBJECT: Re:ADD & diet/nutrition Date: 95-08-03 14:48:09 EDT FROM: Right Leah does anyone have any info on the diet/nutrition of ADD kids. could a vitamin or mineral deficiency cause or aggravate ADD. could food allergies be a factor? doctors and medications do not have enough answers for me. SUBJECT: Re:ADD & diet/nutrition Date: 95-08-03 16:06:55 EDT FROM: Ratatat <> I can recommend a couple of books to you where you might get your answers: Attention Deficit Disorder and Learning Disabilities: Realities, Myths and Controversial Treatments, by Barbara Ingersoll and Sam Goldstein and All About Attention Deficit Disorder: A Comprehensive Guide. Symptoms, Diagnosis and Treatment. Children and Adults., by Thomas W. Phelan Could you explain why or how medication and doctors are not providing satisfaction? Just curious. SUBJECT: Re:just dx'"s with ADD,reply Date: 95-08-03 19:32:01 EDT FROM: LSKDOD To MCZAP: Need to know age of child. It's OK to be ADD! Many resources available to parents. You'll find that it's your job to educate regular classroom teachers. Many resist change. Dr. Keith Bauer, from Chicago, excellent author. Also, Dr. Stephen Garber, out of Atlanta. Leave message for LSKDOD and we'll set up a time to talk. Hope is not lost. SUBJECT: Re:Trying not to feel lost... Date: 95-08-03 19:42:08 EDT FROM: LSKDOD I'm sure that you do feel lost. This is all so new for you and scary too, especially, when you factor in the medication issue. Yes, he could be "rebounding"from the ritalin. Some doctors feel that a smaller dose in the late afternoon helps with that. There are other medications available for children with severe rebounding. I'm surprised that he is only on a morning dose. If you're ADD in the morning, then you're Add in the afternoon, too. Does the doctor have a back-up, or perhaps a nurse pract. that can help you? Unless you want to change doctors, I give my pediatrician a ring and explain what's happened. If the ped. neur. is unavailable, he's left you no choice. good luck. Find your nearest CHADD group.I have two ADD children, (Teens),I am ADD myself, and I've been teaching ADD students in a private school for the past seven years. Leave a message for LSKDOD if I can be of any help to you. God bless. You are not alone. SUBJECT: Re:Moved Messages Date: 95-08-05 10:19:23 edt FROM: Ratatat This message have been moved from the folder: ADD SUBJECT: Re:More questions... Date: 95-08-03 19:49:40 EDT FROM: LSKDOD I don't know where you are, but I can tell you from both personal and professional experience, it is better to seach private testing whenever possible. Many school systems take so long with a parental referral that an entire school year can go by. If you can afford, it I'd recommend private testing. Then, I'd take the results to the school and request a formal staffing so you can share them. Ask the tester to include specific recommendations for your son and his regular classroom teacher. If the budget permits, treat her to a good book on ADD, perhaps one by Dr. Keith Bauer. Suggest to the PTA that everyone would benefit from a guest speaker on the subject(most teachers have to attend PTA) and invite someone from CHADD to make recommendations. Good luck. If you can't get your sons needs met in the school that he's in, look for a private school that specializes in ADD/LD, Wish you lived in Roswell, Ga. I know the perfect place!!Good Luck.lskdod! SUBJECT: Moved Messages Date: 95-08-05 10:47:12 edt FROM: Ratatat These messages have been moved FROM: AHDH and Social Skills Training SUBJECT: Re:Time Management Skills Date: 95-08-02 11:32:21 EDT FROM: Ratatat <>' I think it is important for kids to learn to see time as a commodity that can be managed - like money. If they could get a "global" view of their day, and say, their week, and learn to anticipate how long something will take them - then, they might be more efficient planners. For example: a math homework assignment. You ask how long will this take, and they say 20 minutes. You time it. And it takes only 15. If this is done frequently, they can begin to guage how long it will take them to do a math assignment. This same idea could carry over to all activities during their waking hours: rising, dressing, breakfasting, bathing, sports, doing homework, preparing for bed, etc... They could start to learn how to plan a whole week, organize it so they don't overplan or become overcommitted. Learn how to break big things into little parts to be done over a period of days with near lots of near, small deadlines instead of one big one days off. Does this make any sense? SUBJECT: ADD RESEARCH Date: 95-08-02 20:32:13 EDT FROM: EDEBOHLS Recently I received a message from Jennifer Arvia requesting information about ADD children, I was wondering if you have completed your research or if you still need data? I was in the process of moving when I took your message off the bbs. sorry. I would be happy to respond to your questions if you are still interested. Thanks. edebohls@AOL.com SUBJECT: Need help, ADHD/seizures Date: 95-08-03 02:13:54 EDT FROM: RWCRQB My son was diagnosed with ADHD in May, he has had absence seizures since 3yrs. old. Recently he has started 3rd grade in a new school that goes year round. He takes both Ritalin and Tegretol. He does great in class room. The trouble is he cannot handle free time ie; recess and P.E. and with homework assignments after school. He tells me all the other kids don't like him and he has very low self esteem from it. We need help. I don't want CJ to be a social outcast like I was. Yes he may have inherited the ADHD from his mom. He sometimes has outbursts of inappropriate behavior. By the way his school is a public school and he has not had to have special ed yet. So far he has been able to handle the classroom. If you have any advice or suggesttions please e-mail me. thanks, roxann RWCRQB@aol.com SUBJECT: Moved Messages Date: 95-08-05 10:48:25 edt FROM: Ratatat These messages have been moved FROM: ADHD and Social Skills Training SUBJECT: Need help, ADHD/seizures Date: 95-08-03 02:13:54 EDT FROM: RWCRQB My son was diagnosed with ADHD in May, he has had absence seizures since 3yrs. old. Recently he has started 3rd grade in a new school that goes year round. He takes both Ritalin and Tegretol. He does great in class room. The trouble is he cannot handle free time ie; recess and P.E. and with homework assignments after school. He tells me all the other kids don't like him and he has very low self esteem from it. We need help. I don't want CJ to be a social outcast like I was. Yes he may have inherited the ADHD from his mom. He sometimes has outbursts of inappropriate behavior. By the way his school is a public school and he has not had to have special ed yet. So far he has been able to handle the classroom. If you have any advice or suggesttions please e-mail me. thanks, roxann RWCRQB@aol.com SUBJECT: Re:Need help, ADHD/seizures Date: 95-08-03 08:48:56 EDT FROM: Ratatat << He does great in class room. The trouble is he cannot handle free time ie; recess and P.E. and with homework assignments after school. He tells me all the other kids don't like him and he has very low self esteem fromit. We need help. I don't want CJ to be a social outcast like I was. Yeshe may have inherited the ADHD from his mom. He sometimes has outbursts of inappropriate behavior. By the way his school is a public school and he has not had to have special ed yet. So far he has been able to handle the classroom. If you have any advice or suggesttions please e-mail me. thanks, roxann>> Many children with ADD have a hard time with recess and P.E. because of their unstructured nature. Same goes for homework time at home, unless you provide lots of routine, and astructured environment for the homework exercises. You should be able to include something in your son's 504 plan about the PE teacher providing the appropriate supervision and structure for your son, as well as seeking some sort of accommodation for the recess problems. Most kids with ADD do not need special education services. They can be well served in the classroom with accommodations that actually would help all the children in the class do better. Most have to do with providing structure, planning ahead and breaking things down into smaller units. I hope this helps. SUBJECT: Re:ADD diet/nutrition to Ratatat Date: 95-08-07 13:59:26 edt FROM: Right Leah doctors want to treat ADD with medication, behavior modification, etc. I've been through all that with my son, he's 11 now. this has been going on for 5 years. the medication treats the symtoms, but the doctors don't work on a "cure". teachers don't understand it, every year i have to educate a new teacher about ADD. I've been reading alot about nutrition and the treatment of other ailments. one sentence said that inability to pay attention my be caused by an iron deficiency. I've been searching for answers for a long time. i've explored all avenues of "traditional" medicine and they are not a cure-all by any means. I feel so sorry for my son's struggle with this. if changing his diet might help, i'll do it. I've heard about the Feingold diet for treatment of hyperactivity. Would it help ADD? I don't have any specifics about the Feingold diet yet, but i'll be searching! SUBJECT: Re:ADD diet/nutrition to Ratatat Date: 95-08-07 17:56:36 edt FROM: Ratatat Boy! Do I know your frustration! I, too, am tired of teaching new teachers every year (in middle school we get to train 6-7 different new teachers every year). But, for my daughter, I would do whatever I have to. One of the hardest things to come to terms with is that there is no cure for ADD. It is not a disease that one can be given medicine for and have it go away. But, luckily, we can treat ADD...with behavior modification, with appropriate and helpful accommodations in the school, by teaching kids strategies they can use on their own, etc... You know the drill. It's dripping water, drop by drop, on a stone...evently it makes a dent - and the dent is permenant. It can be very, very tiring to raise a child with ADD, with a struggle rather than a partnership with the schools especially. But, I know that it is just what I have to do to best help my child grow independent and thrive. Though nutrition certainly can play a role in ANY child's health, there are no studies ANYWHERE that show nutiritional interventions will allievate the symptoms of ADD. In some children, some of these symptoms *may* be exaggerated by certain food additives (food dye being the most common), but they do not "cause" ADD, and removing them will not cure ADD. I wish there we a simple answer for tired parents needing support and relief, but there isn't. I have found that sharing information and getting information right here on AOL to be one of the single most beneficial things I have done to date. Keep the *faith* : ) SUBJECT: Re:ADD diet/nutrition to Ratatat Date: 95-08-07 23:00:47 edt FROM: SusanS29 If a child has a severe iron deficiency, he or she may display symptoms that -- on the surface-might look a little like ADD-especially to someone not skilled in diagnosis. However, that child doesn't have ADD. He or she has iron deficiency. Clear up the nutritional problem and the problem disappears. Medicaton does not "treat the symptoms" although I certainly understand why people would believe that. However, there is no "cure." People with ADD have a brain that functions a certain way, and they are going to have to find ways to cope with it. Often medication helps, but it is rarely the whole solution. The Feingold diet has received a lot of attention, but when it is researched in a highly scientific way doesn't show the ability to help ADD in any significant way. I wish ADD *were* a nutritional or diet issue... we could make the whole thing go away so easily. It doesn't seem to be that simple. That said, individuals can have an "idiosyncratic" response to one food or another. Very small per centages of people, for instance, are sensitive to yellow food dye. This sensitivity won't cause ADD but can aggravate it. SUBJECT: Re: ADD diet/nutrition to Ratatat Date: 95-08-08 23:18:25 edt FROM: Alive Five I'm new to AOL and I am very pleased to find this board. I have 3 ADHD children, 17 F, 11 M, 9 M. Yes, this was inherited! As far as diets go, I went the whole way with the oldest one. It didn't make any difference in her behavior or ability to concentrate. All it did was make her teachers feel that I was doing something. This was back in 85. I still deal with educating teachers every year. There is a bright spot though, my oldest has come to grips with her ADHD and pays more attention to her responses. She knows that to be successful she has to keep a log book, otherwise everything goes in one ear and out the other. We were trying to get her off her Ritalin this summer, but she has come to the realization that she is not capable yet. Maybe next year. Behavior modification, a support group, and alot of structure go a long ways in helping everyone cope. RR SUBJECT: Re:ADD diet/nutrition to Ratatat Date: 95-08-09 11:37:27 edt FROM: Right Leah Thanks for your & Susans29's input. I'm the type that never gives up, though. I'll keep looking and trying anything that might help. So far, Cylert and behavior modification have kept "me" from going crazy. Hanging in there! SUBJECT: Re:ADD diet/nutrition to Alive F Date: 95-08-09 11:50:41 edt FROM: Right Leah Bless your heart, I thought I had rough with one ADD child. If I could just get my son to accept his responsibility for homework, he might pass the fifth grade on the first try. If he does his HW, he can't find it to turn it in. Have you ever had this problem? I've tried giving the teachers tickets to give to him when he turns in his HW. He can redeem these tickets at home for extra privileges or money. This worked for about a week or two, then he lost interest. Tried keeping all his HW in one folder, so he'll always know where it is. Then he'll leave the folder at school or at home, always the opposite place. Sound familiar? SUBJECT: RIGHT LEAH/REPLY Date: 95-08-09 18:19:06 edt FROM: LSKDOD I can help you. I just spent 7 years teaching at a school for kids with LD, ADHD, ADD. We have had great success training the kids with disorganization such as you discribed. I live this everyday, myself, so I can sympathize. Drop me a message if you'd like to chat.lskdod. SUBJECT: Re:LKSDOD Reply Date: 95-08-14 03:29:36 edt FROM: ShastaLily I'm a teacher and a parent of 2 ADHD sons. I'm interested in more info. about help in organization. My eldest son will be in first grade this year. He had a very difficult time remembering to turn things in and bring things home last year. Any help in this area WOULD BE GREATLY APPRECIATED. SUBJECT: Re: NEW FOLDER Date: 95-08-15 14:07:28 edt FROM: GTiernan I am new to the ADD arena. I've think that I've known in my heart that my son(now 7 1/2) has had ADD for a long time. We had him repeat K so that he would be in a "calmer" class and now he is entering First Grade. I recently interviewed a (new to me) pediatrician, one who specializes in ADD. He will be examining my son in two weeks and will probably recommend Ritalin, based mostly on our lengthy conversation. Question: Should I see other specialists? Psycologists? Before launching on medication? One of the biggest obstacles to seeing others is that we live in a rather remote area (New York City is 110 miles away) and I hate to "drag" my son all over the place, seeing different doctors. Suggestions?? Thanks. Also...do you have any suggestions on books/information. I have read quite a few, including some neurology textbooks, but I am always on the prowl for more info. Ann Tiernan SUBJECT: Message 08/15/95 Date: 95-08-15 14:12:09 edt FROM: GTiernan I posted a message, and then when I went to reread it, the "Message was no longer available". What happened?? Ann Tiernan SUBJECT: Re:NEW FOLDER Date: 95-08-15 17:43:48 edt FROM: SusanS29 Ann, what kinds of support he will need depends on what kinds of difficulties he has. Also his needs may vary over time. Is he behind at all in school? Then an LD-trained tutor (one who understands ADD or is willing to learn about it and be flexible) might be an excellent intervention, and one you could find within your area in all liklihood. If he has social difficulties, you may be able to help there by having *one* friend over at a time and providing structured activities for them. SUBJECT: Re: Message 08/15/95 Date: 95-08-15 17:44:33 edt FROM: SusanS29 Perhaps the message was moved to another folder, or perhaps it was archived. Periodically we have to archive messages. They go into the Special Education library at that time. SUBJECT: Re:RIGHT LEAH/REPLY Date: 95-08-17 10:32:48 edt FROM: Right Leah LSKDOD: I sent you a message via email. Haven't heard from you. Let me know if you did not receive it. Thanks! Right Leah SUBJECT: Help, please Date: 95-08-17 22:56:42 edt FROM: LSAMOS I am trying to find out what is going on with my 7 1/2 year old son. Soon after he started 1st grade, he was having trouble completing his class assignments and he started giving me problems about doing homework. After a period of time I had him privately tested for ADD. He was diagnosed as depressed and put on medication. He seemed to do better in school and he seemed to feel better with himself. Well, 2nd grade has started (we start early in Texas) and guess what? He still has a problem with class work. Does this sound like a sympton for ADD? He is not hyperactive and is not a behavior problem. Any input would be greatly appreciated SUBJECT: Re:Help, please Date: 95-08-18 21:03:32 edt FROM: SusanS29 He doesn't have to be hyperactive, and he doesn't have to be a behavior problem, to have ADD. Read up on ADD (we have some good files on it here in the Special education section.) If necessary, seek a second opinion. SUBJECT: Re:RightLeah Date: 95-08-21 01:45:18 edt FROM: Alive Five Sorry it took me so long to reply! My husband has been out of town and my children have started school. What a hectic time! Can't find homework to turn in, even though the homework has been completed. Yes, this sounds very familar!!! I was having alot of problems with this until I found a form ltr that states homework assignments. This was in the A.D.D. WareHouse Magazine. The 800 number is 1-800-233-9273. This magazine has alot of books and other info on ADD/ADHD. Anyways, I ordered a form from Edna Copeland, Ph.D. entitled Homeword Assignments. It covers a week span in all assignments. It also has space for long-term assignments, tests, things to take to school and to bring home!! This was a big help in that, I have my children give it to the teacher every morning and beside the homework completed I have written whether it is completed or not. The teacher then can ask for the paperwork. I've gone through many years on missing assignments (even though I know they were completed). I've worked as a teachers aide in Special Education for a few years and let me reasure you, this is atypical of ADD/ADHD children. It is so frustrating for them too! The main thing I can not stress enough is to communicate with the teacher. Tell her what you plan on doing, and ask for her help. You have to continually remind your child but eventually your child will pick up these reminders on their own and things get easier. Hang in there! R.R. SUBJECT: LSKDOD Date: 95-08-23 21:50:12 edt FROM: RMore39900 You said you were a teacher for ADD kids for seven years. I have been looking for 6 months for a place for my child and money is no concern. Private schools seem married to IQ scores and my child is no dunce even though she scores out at 77. I know adults that were diagnosed with borderline intelligence as children who are very successful adults today. I had her in a Montessori school but it's too much of a smorgasboard of learning for a child who needs direction. She needs a curriculum with a designed and repetitive pattern of learning. I would love to know if you know anything more about schools in the New York area.If I had a million I'd open my own. Rmore SUBJECT: Re:LSKDOD Date: 95-08-24 09:43:07 edt FROM: LSKDOD I know how frustrating that can be! My school is in a suburb of Atlanta. I will inquire from headmaster who is formerly from NY of a school in your area, but I need to know where in NY, boarding or day, age of daughter. Yes, Mont.school is the cat's pJ's for some, but not for kids who require intense structure and rep. Good luck. SUBJECT: Re:Help, please Date: 95-09-02 16:19:26 edt FROM: Dirtmom My son was diagnosed with ADD at age 8. He is not at all hyperactive, but could not read or write. Spelling was impossible. With the help of a pediatric neurologist, we found the correct medication for him. At the age of 10, after 2 weeks on Cylert, he read The Black Stallion in a weekend. This from a kid who tested at late first grade level. Now at age 12 1/2, he reads at age level and is looking forward to completing middle school in 2 years in a multi age program. Don't give up. My son still has ADD, but he also was just a late starter. One blessing from all the struggle, he knows how to work, and knows that hard work does eventually pay off. Still, there were many very difficult years and alot of frustrations and tears. SUBJECT: Re:Trying not to feel lost Date: 95-09-07 21:30:35 edt FROM: SIZE2P Laurie, My oldest son had ADHAD and has for many years. He went through the very same thing your 7 year old is going through. Even with a lose of appetite. An additional 5mg can be administered by your doctor for that afternoon time frame, it can be given by the school nurse just as he is going in for lunch. But you will need a physicians note for the school. Also ask your physician about Dexedrine. I have found the side effects are less, though there is some small lose of appetite. I take my sons, plural, to see a neurologist involving ADHAD (Attention Deficit Hyperactivity Disorder). You just need lots of love and patience and understanding. Children with this disorder also need to be taught self control. It may seem hard for a 7 year old, but just takes continuous follow through. Keep the child in a familiar routine so that he/she does not become easily frustrated. Good Luck! Already Been There and Still Going Through It, Pam SUBJECT: POSSIBLE DIAGNOSIS OF ADD Date: 95-09-08 21:51:40 edt FROM: W4621 My daughter (4 years) is in special education, because she is 50% speach delayed. She test significantly low in expressive language and socialize, but slightly high in all other areas (motor and cognative skills). They, the teacher and pediatricain are entertaining the possiblity it ADD,PDD or Autism. What are the criterias for ADD and PDD? And isnt it subjective? Help thanks w4621 SUBJECT: Re:ADD & LD Date: 95-09-09 12:16:15 edt FROM: JWEST999 The most important work (and most difficult) is to sort out the real causes of the child's problems. My son has ADD, allergies, closed head injury, & slight LD. Different specialists will not see the whole picture. He is 15 and we're still learning. Now we discover there is slight dyslexia. Sign up for Recording for the Blind & Dyslexic in Princeton, NJ and get your child's text books on tape!! Good luck! SUBJECT: meds, side effects, concerns... Date: 95-09-09 20:41:54 edt FROM: LCFitz I have a bright and wonderful 7 year old son who, as I have mentioned in earlier posts, began treatment for ADHD this summer. He is now taking two 10mg.-doses per day of Ritalin, one around 7:30 in the morning and one at about noon. In general, we have been VERY pleased with the effect the medicine has had on him; he is often calmer, easier to talk to and reason with, much less wound-up physically, more cooperative, playing better with friends and siblings, etc. when taking the medication. He has just started second grade, so we are anxious to see if it helps him with some of the problems he was having in school last year. Our biggest concern, however, is that now that he has been taking two doses a day for 2-3 weeks, we find that he is off-the-wall in the late afternoon/evening, around dinnertime and before bed. But not only is he hyper, impulsive and out of control, he is even MORE SO than he ever was (or almost ever...). Is this normal? It's almost as if he is saves up all the energy and activity that he doesn't express all day while on meds and pours it all out at once late in the day. Should I accept this as the way it has to be: a tradeoff to get the good effects of the meds earlier in the day? Should we try yet another dose, perhaps smaller, in the late afternoon to help alleviate this late in the day "rebound?" Or should we be trying a different dose during the day, or a different medicine? (Also, with school just starting this past week when we've seen more of this extreme behavior, I am wondering if he is just responding to the stress of changing schedules, starting school, etc.) Once again, I hate to give him any more medication than necessary, however, he is more difficult than ever to live with at this time of day, and I also worry more about his impulsive, emotional and even aggressive episodes with us (it is not unusual for him to throw something or lash out physically at one of us, to have long pleading "upsets" (a 7-year-old version of a tantrum...?) trying to get his way with something, etc...). In any event, I plan to speak with his doctor early next week, but thought one of you might have some input that would help. The hope I've felt for this treatment is turning to concern and frustration. Any suggestions? SUBJECT: Re:meds, side effects, concerns. Date: 95-09-09 22:12:32 edt FROM: SusanS29 "Is this normal?" It's called "rebound." One of the best ways to control it is to add a third, smaller dose at the end of the day when the second is beginning to wear off. This smaller dose slows the rate at which the Ritalin leaves his body and eases the change over to a non-medicated state. Believe it or not some people take a small dose before bedtime as well. If he were my child I would consider the late-afternoon dose. He needs to be able to get along with his family, and rebound puts a terrific strain on everyone (that's not news to you, is it? - smile) What's the gain if things go better at school but fall apart at home? No one is more important to him than his family is. SUBJECT: Re:meds, side effects, concerns. Date: 95-09-11 19:02:31 edt FROM: Ratatat <> Yes, it is normal and probably one of the biggest pains there is when attempting to adjust a child's medication to provide coverage throughout the waking day that is "just right." When you child gets older you sure don't want them doing this after school when they need to be doing homework? And just before bedtime makes for a tired kid. My analogy for rebound is that it is sort of like the medication police force (Ritalin) has gone off-duty and the part of the brain involved in ADD say, "Whoopee, it's gone, now we can PLAY!" I too, if this were my child, seriously consider adding a dose when the child comes home from school. Snack first, then another dose of Ritalin. Good luck. SUBJECT: Re:ADD & LD Date: 95-09-11 20:14:30 edt FROM: PRoger274 We have a son 10 yrs. old in the 5th grade, also in Sp Ed.. He is has ADD and is on Ritalin 10mg. 2 xs a day. We also have another problem with bed wetting. Is this a normal problem with ADD also? We also have a foster child in the house with the same ADD problem with bed wetting. He is also on Ritalin 5 mg. 2x a day. I am at wits end, between changing beds and washing clothes and trying not to get upset with the kids. I need help. We have tried alarms, hormone nasal prays, rewards you name it could someone help. I'm deperate!!! SUBJECT: Re:ADD & LD Date: 95-09-11 22:23:30 edt FROM: Ratatat Hi! I can feel your frustration. Yes, I have heard antecdotes about ADD and bedwetting being familiar bed partners - oops, sorry, poor analogy given the question! Truly, I have heard this. I don't think I have ever read any hard evidence about it, but other parents with whom I have spoken have had the same sorts of problems with their ADD kids. A couple of things. First, cut off all fluids after, say, 6:30pm. Make them go to the bathroom before they go to bed, then before you go to bed, rouse them and walk them to the toilet and have them go one more time before you tuck in. These things may help - I hope they do. I think that when we parents are in the middle of these sorts of exasperating situations it helps to remember the long view. Chances are that by the time the kid goes to college he/she won't be bedwetting any more! Let us know if you learn anything new that works. SUBJECT: daignosis of add? Date: 95-09-13 22:52:21 edt FROM: RAYASH my nine year old daughter has an incredible amount of energy. she is always, talking, interrupting, has been bossy with peers, is loud, noisy,in constant motion, can't keep still or quiet, and often drives us nuts.her teacher last year suggested that we have her evaluated.we also had her in a social group, run by a social worker, who also suggested that we have her re-evaluated.we saw a neurologist,who has been following her for years for migranes.he is having her teachers fill out behavioral forms.he feels that her behavior is more developmental than add.her report cards are fabulous.she is one of the top students academically.her pediatrician does not feel that she has add.both feel that only 5% of the population does have add, and that it is very easy to say a child has add and point the finger. she is starting to slow down and act calmer and more controlled.her social worker feels that she is starting to successfully transfer skills. any ideas would be appreciated.thanks, dave h. SUBJECT: Re:daignosis of add? Date: 95-09-14 01:53:20 edt FROM: SusanS29 "he feels that her behavior is more developmental than add.her report cards are fabulous." It is a myth that all children with ADD have trouble achieving in elementary school although most have difficulty in some areas *eventually.* What you described behaviorally sounds very much like ADD and not like "immaturity" at all. In addition - how do you explain "immaturity" in such a bright child? I mean, it's not like curly hair or blue eyes. It comes from *some place.* ".her pediatrician does not feel that she has add.both feel that only 5% of the population does have add..." This is true, ( most say3 - 5%) but... often pediatricians aren't very good at diagnosing it. I think you should follow through with the evaluation myself. SUBJECT: Re: Bedwetting Date: 95-09-14 22:05:18 edt FROM: JWEST999 Consider food sensitivities or allergies. Read"Is This Your Child" by Dr. Doris Rapp of Buffalo, NY. Many hyperactivity, and attentional symptoms can by triggered by allergens (chemicals, molds, foods, environmental, etc.). Seek physicians who understand provocation/neutralization. Most any part of your body can be reacting to allergies, including the bladder!! SUBJECT: Re: Bedwetting Date: 95-09-14 23:49:14 edt FROM: SusanS29 I guess... I have read Rapp's work and am extremely skeptical. Meanwhile, replicated science has demonstrated that kids who wet the bed sleep very deeply at night... so deeply they miss the signal that would wake them up. SUBJECT: Tegretol or Depakote Date: 95-09-15 17:07:24 edt FROM: EMLME Anyone know what effect these medications have on a 13 year boy with ADHD who has been on tofranil? He is being weaned off tofranil which did not seem to have any effect on him. He recently moved back with his family from a residential home and at times have "explosive" reactions to the new situation. Also does anyone know of a psychiatrist in NYC that would see a child on a sliding scale payment basis? Any information would be greatly appreciated -- new stepmom with her hands full! Thanks EMLME SUBJECT: Moved from another folder Date: 95-09-15 18:40:00 edt FROM: SusanS29 SUBJECT: Tegretol or Depakote 95-09-15 17:00:57 EDT FROM: EMLME Posted on: America Online My ADHD 13 year son has been on tafronil for about 8 months. I believe that it really has not done any good for him and took him to be reevalauated. The suggestion is to use either Tegretol or Depakote has anyone heard anything about these medications? Any suggestions where I could research this a little further. Thanks EMLME SUBJECT: ADD Date: 95-09-16 13:38:53 edt FROM: Sherry1138 I have a 7 year old whom the school system has labled ADD. I just found this area on AOL and I am sooo! grateful to have access to other parents all over the US for support. My son is unique, in that his symtoms are borderline. He is active, emotionally impulsive, easily distracted, ect ect. However, he is learning in school and with great structure and consistent attention he will learn to control his impulsive behavior. I have witnessed his giant steps forward this summer. Now that school is in session the teacher has suggested medication. She has given me the impression she feels the extra effort given to my son is not fair to the children whom are not behavior problems in the classroom. I feel this is her job and she needs to deal with it. Medication should not be used to create a robot. I realize teachers have there hands full and often have no support, but I really wish people would suggest medication as an absolute last resort. I have many questions to ask the world of ADD. I especially would be interested in shareing ideas with parents and teachers whom have experience with behavior modification and teaching children LIFE LONG skills in SELF CONTROL not medication control. New techiques and ideas are needed often because my son will lose intestest quickly and the technique is no longer effective. TIME OUT worked in my house for about a week. I also need some self esteem boosting ideas!!!!!! What is Feingold diet I have read about in the folders? I could go on forever.I look forward to communications with other tired parents SUBJECT: Re: ADD Date: 95-09-16 19:17:37 edt FROM: SusanS29 "Medication should not be used to create a robot." I agree. Fortunately it doesn't do that (honestly). The thing is that when medication helps, *everything else* the teacher does and everything else *your son does* helps *more.* It's a tremendous tool. It's not a "chemical strait-jacket;" it allows the student to tap more into the best he has to offer instead of what impulsively and unpredictably floats to the surface. I truly understand this view: "I realize teachers have there hands full and often have no support, but I really wish people would suggest medication as an absolute last resort..." but you have to look at it from the school's viewpoint: they have seen medication work miracles. No, it won't do the whole job, and the teacher's wording is unfortunate at best-that it's not "fair" what she's doing. (Sure it is: doing what each student needs is the *only* fair thing to do, and NOT doing that would be terribly unfair.) However, teachers aren't trained diplomats, and they aren't therapists, and they vary in how well they will communicate. What counts is if medication will help or hurt *your* son. It may well help and is *highly* unlikely to hurt (Ritalin is safer than aspirin although that doesn't make headlines and so is rarely repeated in the news). Get yourself educated on this issue, and then make a decision. As for the self-esteem, you truly cannot help him build it. That's a "self-made" job, and his self-esteem will repair from only one thing: successes *he* recognizes as successes. The difference between people with poor self-esteem and good self-esteem is that the latter group pats itself on the back for jobs well done and forgives itself for the inevitable less-than-perfect or slip-ups. Prompting from the outside doesn't count... SUBJECT: Re:RIGHT LEAH/REPLY Date: 95-09-17 00:33:55 edt FROM: Bren421 Iskdot, please share info!!!!! Bless You SUBJECT: Tegretol or Depakote cont'd. Date: 95-09-17 02:39:32 edt FROM: EMLME From my previous message-my 13 year old stepson is ADHD and it was suggested to switch him from tofranil to either tegretol or depakote. He was on tofranil for approximately 8 months and prior to that he was on ritalin. He has a way of becoming very defiant at times over the most "minor" of things. Other times he can be the nicest kid around. There is a 4 1/2 yr. old brother who sees this Dr Jekel & Mr. Hyde. Not the greatest of times especially since the 13 yr.old recently moved into our house from a residential treatment facility. Any suggestions or comments regarding the meds? Also how does a stepmom hold it all together when on this roller coaster? Thanks for any suggestions. EMLME SUBJECT: Re:ADD & LD Date: 95-09-17 08:43:10 edt FROM: BakerTerri HI : ) My name is Terri, I have a 8 yr old with ADD & some LD's. We dont have the bed wetting problem, ours is with BM's. (withholding) What we did was to first to our Ped and get the BM treatment started, rule out the posibilty a medical problem starting it, then we went to our counceller to find out what started it in the first place. If you need to "talk" or blow off steam" . I now I do sometimes please e-mail me : ) SUBJECT: Re:ADD & LD Date: 95-09-17 14:32:36 edt FROM: SusanS29 A lot of time what starts the BM thing is that the child either doesn't notice the signal to go (because of hyperfocus) or ignores it. That leads to a cascade effect where the child gradually loses more and more control over the process. SUBJECT: Dexedrine Span Date: 95-09-19 07:59:38 edt FROM: COOKIEM2U The doctor just changed my son's medication from Ritalin to Dexdrine Span. Has anyone had any success with the Dexedrine? The Ritalin wasn't working as well as it had in the past. He was already on 20mg in the morning and 15mg at noon. He needed an increase at lunch. This may not have been a problem but we are struggling with weight loss during the school year. He takes no med on weekends, school holidays, summer vacation. We just moved so we are seeing a new doctor but with complete medical records she was able to see what had been happening. SUBJECT: Re:Dexedrine Span Date: 95-09-19 14:49:22 edt FROM: SusanS29 "The doctor just changed my son's medication from Ritalin to Dexdrine Span. Has anyone had any success with the Dexedrine?" Sometimes it works spectacularly. A small minority of people respond to Ritalin but not Dexedrine (and vice-versa). However... Dexedrine is also likely to suppress his appetite. SUBJECT: Re:meds, side effects, concerns. Date: 95-09-20 17:48:24 edt FROM: Costumer1 What you describe is very similar to what goes on in our house. I have a 9 year old daughter who has been on Ritalin for 2 years now. We went off during the summer and just dealt with it, but since school has started, we have temper fits in the evening just like you describe. When I asked the Pharmacist about rebound, he said he had never heard of it happening with Ritalin. It is VERY reasuring to hear that it happens to other kids, too. We have been going for long walks in the evening with my daughter roller-blading, and so far it seems to be helping. I just wish there was an easier answer other than exhausting her. SUBJECT: Re:meds, side effects, concerns. Date: 95-09-20 22:30:02 edt FROM: Oynk oynk I am somewhat surprised that your pharamcist never heard of rebound with Ritalin. I hear about it all the time. Some of the parent I know have done well with a smaller dosage (of Ritalin) when their child gets home from school. (IT also helps with the homework) SUBJECT: Re:meds, side effects, concerns. Date: 95-09-20 22:42:21 edt FROM: SusanS29 There is an easier way to handle it. Rebound happens because Ritalin leaves the body very quickly-sometimes so quickly that it's kind of a chemical roller-coaster ride for the child at the end. The solution is usually a smaller dose of the Ritalin near the end of the effective period of the last dose-which stretches out that fading, and makes it smoother. In addition-make sure that school isn't just too stressful. Make sure the teacher is making any needed accommodations. MAYBE that stressful reaction is justified-and not the Ritalin at all. Make sure the child has a 504 plan in place at school. SUBJECT: Re:Dexedrine Span Date: 95-09-22 00:19:53 edt FROM: Valsudur As my son got older, he started complaining more and more that Ritalin was causing him to feel 'tense and shakey'. At 13 he was complaining about it a lot. We first tried Cylert, which turned out to be a disaster, and then Dexadrine which he seems to function well on and doesn't make him feel as tense. I prefer it because it performs as well as the Ritalin ever did and he doe seem more controlled. Actually, he doesn't think it does anything but make him quieter when in fact it really does more than that (but as a teenager that knows everything...) SUBJECT: Re:meds, side effects, concerns. Date: 95-09-22 18:34:38 edt FROM: Bre5 I am also concerned about rebound from Ritalin. My son (7) seems to be tired and restless, and sometimes irritable, after school. He gets 5 mg. in the AM and 5 mg. at lunchtime. My concern is that twice a week we drive to the university after school for an hour of speech therapy. I was thinking of giving him the "half dose" discussed here, but that would only be about 2.5 mg, or half a pill. Is that too small a dose for any results? It seems like I read somewhere about too low of a dose causing ADD symptoms to become worse. does anyone know about this? SUBJECT: Re:meds, side effects, concerns. Date: 95-09-22 20:03:54 edt FROM: SusanS29 Talk to your doctor and give it a try. Too small a dose won't make the symptoms worse, but having it wear off suddenly does, and that half-dose is often the best way to manage it. SUBJECT: Re:meds, side effects, concerns. Date: 95-09-24 01:03:03 edt FROM: Valsudur You will be the biggest input to the doctor in regards to how the Ritalin is or isn't working. We continually made adjustments depending on what input we got from the teacher and my observances as to how well my son would perform school work at home (as to distractibility, fairly consistant problem solving steps being followed, reading comprehension). At his highest medications, he was taking 30mg morning and lunch, and 20 after school Many psychiatrists thought he should have been on it full time including weekends to help in the social skills which are normally regressed in ADD children. Only problem we ever had with evening doses was appetite (we'd let him have a snack later) and difficulty in getting to sleep, which was only a little worse in that he is a night owl anyway. SUBJECT: Re:ADD diet/nutrition to Ratatat Date: 95-09-24 13:44:34 edt FROM: KirkwoodB I am looking for research information on the relationship of sugar and hyperactivity. I understand NIMH did some studies several years ago that indicated sugar did not increase hyperactive behavior in children. However, they did find parents "saw" increased active behavior if they believed their children had had sugar. Please send any info or directions I might search. SUBJECT: Re:RIGHT LEAH/REPLY Date: 95-09-24 13:50:02 edt FROM: KirkwoodB I would be interested in info on how to help my 13 year old organize himself. His room is a disaster, he leaves his things all over. We are doing alright with school; He has a backpack and everything goes it it after working on it, separate files for each class, a set of school books kept at home, homework done first thing when he gets home. Anything else we can try? SUBJECT: Re:ADD diet/nutrition to Ratatat Date: 95-09-24 20:27:24 edt FROM: Ratatat <> I too have read the reports you are thinking of. I believe they were reported in the ADHD Report published by Guilford Publications and edited by Russell Barkley's group. I have also seen reports on other studies done on children, sugar and hyperactivity and remember that they all said the same thing. Some studies were done in England and some here, but the net result was that sugar alone did not increase activity. One report I read suggested that sugar with carbohydrates created a slight increase in activity, but carbohydrates with protein increased a child's potential! Peanut butter on wheat toast before an exam, maybe? SUBJECT: Re:RIGHT LEAH/REPLY Date: 95-09-24 21:09:51 edt FROM: Ratatat <> Actually, it sounds like you are doing a great job! On the bedroom there are a few choices. If he hates it the way it is too maybe you could come up with a plan to get it organized, and at the same time reduce the amount and number of things that need to be kept neat. Can he schedule some minutes everyday towards maintaining his room? With kids this age a democratic approach is sometimes helpful. SUBJECT: Re:ADD diet/nutrition to Ratatat Date: 95-09-24 22:00:43 edt FROM: SusanS29 If that's the study I'm thinking of, parent who thought their children became more "hyper" when they had consumed sugar were studied. They were told their children had received sugar when they hadn't, and a significant number of parents reported increased hyperactivity. Then the children were given sugar but the parents were told they hadn't, and the parents reported less hyperactivity. Unfortunately I don't have a footnote or cite for you. SUBJECT: Re: RIGHT LEAH/REPLY Date: 95-09-24 22:02:23 edt FROM: SusanS29 Help him clean it up. Organize the task for him. Set the timer for ten or fifteen minutes, and let him pick a specific task-say, putting books back on the shelf. Work in parallel with him. While he is working on his room, you work on yours. Telling a child with ADD to "clean up your room" rarely works. The task looks overwhelming to him, and he can't, himself, break it down into the needed tasks. SUBJECT: Re:RIGHT LEAH/REPLY Date: 95-09-25 06:48:41 edt FROM: Ratatat Susan, those are terrific ideas. I have heard a suggestion too that one way to "set the timer" is to use favorite songs from a CD or a set of songs. This way you get to work to the music too! :) SUBJECT: Re:RIGHT LEAH/REPLY Date: 95-09-25 13:04:40 edt FROM: SusanS29 Yes, Ratatat! I know of an adult who uses individual cuts from an album to keep her on-task. She says to herself "I'll load the dishwasher until this song is over" (instead of the traditional ADD way: put in two spoons, remember you haven't polished the silver in four years, get out the good silver and the polish and put it on the table, notice the newspaper, read half of one article that gets your ire up, start to write a letter to the editor and go hunting for a pen, find the pen in the bathroom but notice there's no toilet paper and go to the pantry, etc.-grin) SUBJECT: Re:ADD diet/nutrition to Ratatat Date: 95-09-25 21:45:49 edt FROM: Oynk oynk Someone did a study at the end of last year (I know I saved it...but who knows where) that finally found some correlation. The crux of it was that sugar did increase hyperactivity in certain kids WHEN taken on an empty stomache. Makes sense to me. SUBJECT: Re:ADD diet/nutrition to Ratatat Date: 95-09-26 13:26:22 edt FROM: Ratatat <> Ah, yes - but any calories consumed on an empty stomach would probably increase activity! Did they do a double blind study? How do we know it was the sugar and not the calories? Sorry to play devil's advocate, but I have read numerous studies that do not agree. SUBJECT: all my children Date: 95-09-26 17:24:44 edt FROM: Kthirty Life has taken me up and slam dunked me again. I have twins, one with moderately severe asthma and the other with an occupational disability with the hands. My asthmatic is using the onset of puberty to balk at daily lifesaving treatment, I'm doing the fourth grade again with other twin and his homework. AND NOW after four weeks my kindergartener is being refered for testing for ADHD. I don't know if I've got it in me to learn all about another medical condition. I wanted one child to be "normal". There is such controversy about ADHD. I know it will take alot of work on our part. I'm just so tired. Thanks for listening. SUBJECT: Re:all my children Date: 95-09-26 22:38:26 edt FROM: PattiMcHam Try not to let it get you down. We had five children in our family growing up. One (me) also had severe asthma. In fact, I was hospitalized for several months and had to take daily inhalation treatments, twice weekly shots, and lots of expensive medication when my parents really couldn't afford it. I'm now 36 and am happily married with a 7 month-old, as well as a flourishing career. It DOES get better! Incidentally my older sister had severe kidney problems and required very serious surgery as a child. Sister #4 had a chemical imbalance in her teens. We're all happy and fine, now. Is anyone "normal"? Happily, there is much that can be done for your children-therapy that was not available in schools when we were young, medication with far fewer side effects, and a much more compassionate educational system for children who need some special attention. Hang in there!!! Someday they may even thank you...! SUBJECT: Re:all my children Date: 95-09-27 08:09:33 edt FROM: Ratatat <> Any time you want to post to vent, or ask or whatever... please feel free. That's what this is here for. Like any controversial issues, most controversy exists because of misinformation - often perpetrated by uninformed groups. Education is the best medicine in this case! :) We are here and all ears o( )o :) SUBJECT: Re:all my children Date: 95-09-27 10:00:47 edt FROM: Kthirty Thank you for the last two posts. My youngest is going to be observed by the school counselor on Thursday. If his recommendation is to seek further diagnosis I will be reading everything here and going through the download stuff. I know from my other two children how important it is to be informed. Thank goodness I'm a stay-at-home mom and have the time, I am in awe of my working friends who deal with these issues too. I will let you know the fate of Travis - whose nickname is The Terminator, maybe that should have been a clue. Kathy SUBJECT: Re:Room organization Date: 95-09-28 00:51:18 edt FROM: Valsudur We have given up on room organization. We just make it a weekend chore, and anytime my son rearranges without checking with us, he is forced to put it back. We allow him all day until dinner, which we hold for him until his room is completely organized. Doesn't last through Sunday night, but at least on a weekly basis, we don't get to the point of needing a bulldozer. SUBJECT: Re:all my children Date: 95-09-28 15:45:34 edt FROM: SPECEDPAR To make anyone feel better about a ADHD child. Most of the time it is harder to parent my ADHD child than my other two which Nick is Down Syndrome and Tom is severe LD and Deaf/oral. Mark-ADHD does good until he has a flair up. We have tried meds but I'm tired of dealing with doctors on this subject. I might try one more, we are dealing with hearing aids right now......... SUBJECT: Acupuncture or Hypnotherapy Date: 95-09-29 00:13:35 edt FROM: EMLME I am too tired of meds for my 13 year old stepson. He has been on ritalin and Tofranil and they are now suggestion tegretol. Has anyone heard of using acupuncture or hypnotherapy? My stepson gets out of control when he flairs up and for a 13 yr old it is getting harder to come him down. Thanks SUBJECT: Re:Acupuncture or Hypnotherapy Date: 95-09-29 07:55:49 edt FROM: SusanS29 It's my personal opinion-but one I think all experts would share-that a 13 year old in such a situation needs a solution very likely to work. Flare-ups like that begin the chain of events that result in them in nano-seconds, within the brain. The only way to interrupt that chain of events is with medication. So some degree the medication helps, and to some degree the medications enable the young person to make better choices. Acupuncture and hypnotherapy-if they even work, which is unlikely-are external controls. This young person needs to develop internal controls, and medication combined with active therapy (to help him learn better ways to respond) is the most-proven way to get there. SUBJECT: Re:all my children Date: 95-09-30 01:34:54 edt FROM: Kthirty Travis was observed by the counselor and he recommended we have him tested. I went out and bought $60 worth of books to read. He now has an appointment in mid-November. I am planning to run a log and download a pile of stuff to read, plus go to the libraries. I'm scared to death of this. Kathy SUBJECT: Re:Acupuncture or Hypnotherapy Date: 95-09-30 01:34:57 edt FROM: PeterCB55 To date, I have not come across any literature that supports the use of either hypnotherapy or acupuncture as having any specific or proven benefits from children with ADD/ADHD. Underlying the promise of many "self help" strategies (such as hypnotherapy) is the hope that children with ADD/ADHD, will be able to "learn" a technique and experience benefits that can be generalized across settings. The idea that a greater degree of self-control can be gained by training in or use of self-management techniques has been around for quite a while now. Unfortunately, the results as documented in many outcome studies suggest that with even the most well constructed self-help programs (such as with cognitive behavioral therapies, behavioral self-management interventions, and other strategies like meditation, or more recently Karate), benefits are found, but they are in relatively modest proportions compared with our hopes. To understand why children with ADD/ADHD have variable success with self-management strategies, one needs to appreciate how the core symptoms of inattention/distractibility and impulsivity impact on learning and performance of many skills in everyday life. Children with ADD/ADHD often do not demonstrate a normal learning curve even the most basic tasks. They tend to miss details, fail to register instructions, forget sequenced procedures , have problems with retrieval and retention of newly learned information, tend to rely on "rote" approaches when deploying such skills and they are often unable to apply them in an intuitive and flexible fashion. Training in self-hypnosis takes time, is not particularly "interesting" and the child using it must be able to link inner processes and cues to sometimes complex interpersonal transactions (in the case of temper outbursts) in a fluid and rapid manner. The initial success reported with ADD children in "learning" to regulate muscle tension via an EMG trainer or raise ones temperature via a thermal trainer, likely reflects their dependency upon feedback provided by the machine which is set on a predetermined ratio that is mostly positive and frequent (a pattern not typically replicated in the real world). Internalizing the proper "signals" and practicing the skill across settings is also complicated by the fact that such children tend to have a very hard time doing anything consistently unless motivation is high and extrinsic reinforcement is available. Have you ever noticed how many false starts such children have even with relatively interesting hobbies, sports, or activities? Children with ADD by nature tend to lose interest and /or have trouble sustaining investment unless there is frequent turnover in the reward structure and the positive outcomes are relatively easy to produce at easier as well as more difficult levels of performance. While there is reason to believe that self-management activities do benefit some children when practiced and used appropriately, they may take a fair amount of time before they can yield reliable effects outside of the setting in which they are learned. I could write a book about the children who were able to display newly learned self-control skills in my office. Yet, the moment they walked out and their request for a soda was turned down by mom or dad, these new skills took a back seat to aversive behaviors that had proven themselves effective in hundreds of previous battles. Improvements with your 13 year-old's anger difficulties may be more easy to come by through the use of simple, respectful, practical and consistent approaches to those situations that are most likely to produce flare-ups using time-tested strategies outlined in many parenting guides along with judicious and reasoned use of medication to treat the core symptoms of ADD/ADHD. PeterCB55 SUBJECT: Re:Acupuncture or Hypnotherapy Date: 95-09-30 11:07:08 edt FROM: SusanS29 Peter that was one of the *best* explanations I have ever seen on this issue. May I quote you on occasion (with attribution, of course?) I would like to comment on this further if you don't mind. You said: "Underlying the promise of many "self help" strategies (such as hypnotherapy) is the hope that children with ADD/ADHD, will be able to "learn" a technique and experience benefits that can be generalized across settings." I moved into the field of learning disabilies in 1969, shortly after the term "learning disablities" had been coined for the first time. Experts had noted that some children had significant difficulties with what we call "visual perception." Back then we tended to think that "visual perception" was one thing, although we acknowledged that could be complicated by things like difficulty sequencing and such. So we set out to fix these kids. If the child had trouble reading and tested low on this thing we called "visual perception," we concluded that if we fixed the visual perception problem, the reading would take care of itself. I was actually *told* to take kids out of *reading instruction* and have them do puzzles, string beads, work with peg boards, etc. Our materials library for working with these kids was full of toys that emphasized visual perception, such as "Light Brights." Guess what. These kids got better at stringing beads (there's a talent), puzzles, and "Light Brights." However, it did *not* generalize, and meanwhile the children lost a lot of valuable time. We did the same thing with "auditory perception." At least that's easier to measure, so we concluded that "auditory perception was hard to remediate globally." When I first moved away from this model and started working intensively with the *task the child had to do in the classroom,* finding ways the child could do *that task* and learn from it, I was criticized quite harshly by my supervisor. Fortunately that's what the principal and teachers wanted, and she reluctantly let me do it. Within three years the first IEP law had been passed, and fortunately by then the research was *screaming* that these broad problems can't be remediated and that specific skills have to be taught. We know this in physical therapy also. If you have a child with CP affecting both legs, and she learns to use one leg in a more coordinated way to go up steps, it doesn't generalize to the other leg, and it doesn't generalize to bike-riding. I would urge any parent who thinks they can purchase some kind of training for their child that will cause global, consistent improvement in ADD to look at the history of interventions for learning disabilities. SUBJECT: GREAT book! Date: 95-09-30 21:09:38 edt FROM: PattiMcHam I thought you might be interested to know about a SUPER book I just read. It is called "Taming the Dragons: Real Help for Real School Problems". It has a lot of very practical advice on how to solve common problems parents of ADD/HD and L.D. have. For example, on one page it might say, Problem: Your child often forgets her spelling book", then it gives a solution. Every possible academic, social, and behavioral problem is brainstormed for you. It also gives information about ADD and ADHD, medications, special education laws, and how to deal with some of the behavioral issues as well. I think you can special order from any bookstore if you give them the title and author (Susan Setley, who by the way happens to be the host of our message board). If you want to order it directly from the publisher: Starfish Publishing Co., 6510 Page Ave., St. Louis, MO 63133. Nice job, Susan!!!!! SUBJECT: Re:GREAT book! Date: 95-09-30 23:38:03 edt FROM: SusanS29 "I think you can special order from any bookstore if you give them the title and author (Susan Setley, who by the way happens to be the host of our message board)." Bless your heart, Patti! HOWEVER: it is only available nationwide at WaldenBooks and Borders. BTW Patti is also an author. I managed to get copies of her books and will report soon. She fills some important gaps in what parents and teachers know about language development and skills. SUBJECT: Sensory Defensive Therapy Date: 95-09-30 23:51:23 edt FROM: DYSPRAXIA I also have three special children, genetically my husband and I have a 1 in a million shot at not having an LD child. They all feel sorry for children who are not LD or at least ADD. However, after years of trying to figure out what was going on with the youngest, No medicationas seem to work right and he has a liver problem just to complicate matters; Patricia Walbarger came to town and trained a number of professionasl in the brushing, deep compresion and exercise routine for sensory defensive children. It worked! Also, as a result of using SIOT to work on his vestibular fuctioning he is able to maintain eye convergence long enough to read at grade level. He is no longer on any drugs. He is still no angel but his eyes don't dance all the time and he can sit in a Reg. Ed Class! SUBJECT: Re: TESTS Date: 95-10-05 21:01:42 edt FROM: Kthirty Does anyone have any though on a questionaire with 18 questions adapted from DSM-III by McGee-Chapel. This is all our doctor wants us to fill out. We have a long relationship with this doctor and we always have looked at all sides of a problem and then gone with our ( doc and me) gut reaction. So far it has worked! He says after extensive testing by the local experts he gets a paragraph back that says "child seems to be distractable and hyperactive-try medication" which he already knew in the first place. Kathy SUBJECT: Re: TESTS Date: 95-10-06 00:31:47 edt FROM: SusanS29 Kathy, diagnosis of ADD is a two step process: 1) Make sure ADD reasonably explains the individual's difficulties 2) Make sure nothing else is a more reasonable explanation (for instance, a person who is schizophrenic will be distractible, but not necessarily have ADD). There aren't any tests that can make that sort of judgment. THAT SAID-I'm in favor of the testing because about 40% of those children with ADD *also* have some sort of language or learning disability-a double whammy that needs to be discovered as soon as possible. Also some learning disabilities will mimic ADD-particularly difficulty using language. SUBJECT: Re: TESTS Date: 95-10-06 03:01:07 edt FROM: PeterCB55 Although an 18 item paper and pencil measure represents something of an extreme where diagnostic "efficiency" is concerned, I would be most reluctant to place much confidence in the output of any single instrument to handle the issues of differential diagnosis. Recent literature suggests that "narrow" band symptom rating forms (measures that only sample attention related problems, such as the Conners Teacher Ratings Scales [28 items]) can overdiagnose children with behavior problems and underdiagnose children with attention problems without hyperactivity or other learning/mood problems. Moreover, these instruments are best used in combination with a decent developmental /medical history, other broad band measures of adjustment, and other forms of assessment to account for the possible influence of other factors (e.g., learning, mood and environmental factors) . Symptom checklists of any sort tend to work best when there are no other concerns , there is a high degree of agreement between parents, school/day care staff and the history clearly suggests that only those symptoms account for the current difficulties. Generally speaking, these instruments are a bargain, if saving time is the issue, and you are not real concerned about the accuracy of the results. Otherwise, you may be better off to take time to find someone who will do a more thorough assessment of the issues and factors involved. PeterCB55 SUBJECT: Re: TESTS Date: 95-10-06 08:44:19 edt FROM: LArmock111 Does anyone know why Michigan seems to have more than its share of ADD/ADHD diagnosed Children ? Mom w/one SUBJECT: Re: TESTS Date: 95-10-06 13:51:02 edt FROM: Ratatat <> Where in Michigan do you think this is happening? Do you know that we have one of the nation's premier diagnositic centers for ADD in children and adults in Michigan? Maybe the diagnostic tools and knowledge are just getting better? SUBJECT: Re: TESTS Date: 95-10-06 19:14:13 edt FROM: Kthirty Thanks for the input! There is so much to learn. Kathy SUBJECT: Michigan testing Date: 95-10-06 20:00:38 edt FROM: LArmock111 Please give name of "premier diagnostic center" ! SUBJECT: Re:Michigan testing Date: 95-10-06 21:07:34 edt FROM: Ratatat <> Sure! In Southeastern Michigan at the Children's Hospital of Michigan they have been operating a ADD clinic for kids for as long as I can remember. One of the founders and practitioners there is Arthur Robin who has a national reputation in dealing with ADD, particularly in teenagers. The University Clinic, affiliated with Wayne State University Medical School opened the first clinic for adults with ADD in the country. And to top it all off, after the beginning of the year - these two groups are jointly going to open an ADD Lifespan clinic! Hallelujah! ADD runs in families, it makes sense to treat it in families. SUBJECT: Re: TESTS Date: 95-10-07 19:17:12 edt FROM: Valsudur There is a DSM-IV that I think is a more appropriate tool to use for a psychiatrict evaluation. SUBJECT: Re: Bedwetting Date: 95-10-08 13:29:23 edt FROM: CherylN102 Both our daughters had trouble with milk and bedwetting. The older daughter persisted with bedwetting up through age 4 years until I stopped letting her drink milk. The second daughter had chronic earaches and erratic bedwetting up through early grade school. I stopped giving her milk early on which helped with the earaches, but discovered other accidents were triggered by foods like pudding. The older daughter also had chronic headaches starting in preschool. The doctors always insisted it was stress. Heavy exercise helped some, but when her hormones started up in Jr. High the migraines really came on with a vengence along with mood swings. The neurologist gave her a list of foods to avoid which has markedly reduced the frequency and intensity or the headaches. Her worst offenders are peanut butter, chocolate, vinegar, aged cheese, processed meats, garlic and onions. I discovered in my early 30's that milk gave me asthma. It was just a fluke. I went on a milk free diet to eliminate fat intake and discovered that my morning hayfever and wheezing with exercise went away. Also I felt less spacey. The older daughter is an honor student, but has poor spelling and reverses numbers in math sometimes. She tends to make little errors. The other daughter was placed in special ed. preschool because of delays in language processing. She is an excellent speller and learned to read well, but had trouble with math. She attended both regular ed. and special ed. kindergarten and an integrated LD first grade, but has been in regular ed. since. She needed tutoring in math and was an A/B student. In high school she hit a wall with the processing and was diagnosed with ADD and a significant auditory processing learning disability. She is on 5 mg. of Ritalin 3 times a day. She can understand conversations in a crowded room now, do her school work in a noisy classroom, and her energy level rises with Ritalin. Her rebound is fatigue and spaciness. She has trouble watching TV without Ritalin. She claims she is higher without drugs though. The spaciness is not unpleasant, but makes functioning in the real world difficult. SUBJECT: Re: TESTS Date: 95-10-09 02:09:52 edt FROM: SusanS29 "Does anyone know why Michigan seems to have more than its share of ADD/ADHD diagnosed Children ?" I suggest you give us more details. What do you mean by "more than its share?" SUBJECT: Re: TESTS Date: 95-10-09 02:11:07 edt FROM: SusanS29 "There is a DSM-IV that I think is a more appropriate tool to use for a psychiatrict evaluation." DSM-IV isn't a diagnostic tool. It provides diagnostic guidelines, not the same thing. SUBJECT: Re: TESTS Date: 95-10-09 08:47:50 edt FROM: Kthirty Update on Travis. Thanks for all your input, have been rereading posts and gone into the libraries. One set of grandparents are very supportive (afraid to tell the other) and suggested we carry on and find as many opinions as possible. I have one question. Travis is active but he does not bounce from activity to activity. He does not like to be bored. When he is working on one of his projects he works through to the end. Yesterday he mastered the blender and made everyone orange slushies and then vanilla milkshakes. My feeling is that he is seen as distractable by his kindergarten teacher because he is not really interested or bored by the constant repetition that kindergarten teachers must use to make sure everyone is with the program. Does this ring a bell with anyone? Kathy SUBJECT: Re: TESTS Date: 95-10-09 12:59:22 edt FROM: SusanS29 "kindergarten teachers must use to make sure everyone is with the program. Does this ring a bell with anyone?" Understand that I'm *not* saying Travis has ADD. However: the title (attention *deficit* disorder) isn't accurate. For some it's more like attention surplus disorder-they have trouble focusing on anything for any length of time. For others attention focusing disorder would be a better name. They do concentrate on some things -- *but they have diminished ability to control where their attention will go.* In other words, it wasn't completely his choice to stick with making the drinks-if he has ADD. If he'd needed to stop, let someone else finish and complete his homework he might have had little or no staying power for the homework. With a focusing problem the person doesn't choose what to pay attention to. Sometimes they get very good at the things that grab their attention. So a person might be a very good writer, able to stick to it and produce very good writing, working for hours at at time-and yet never finish doing the dishes and always leave it half done. Not willfully, either. SUBJECT: Re:testing and SusanS29 Date: 95-10-10 08:36:04 edt FROM: Kthirty Susan - Thank you for the take on "surplus". THAT rings a bell! With Travis and even with his mother (me) as I can sit down to write and not "surface" for an hour and be amazed at the time. I'm sure I don't do the dishes because we had spaghetti last night and now...Kathy SUBJECT: Re:testing and SusanS29 Date: 95-10-10 10:18:23 edt FROM: KTJ OTR Susan, Good explanation. I find many parents and colleagues who believe that "attention" is always volitional. Yes, we would all like to believe that but unfortunately its just not so with ADHD. SUBJECT: Re:testing and SusanS29 Date: 95-10-11 08:45:20 edt FROM: SusanS29 "Good explanation. I find many parents and colleagues who believe that "attention" is always volitional. Yes, we would all like to believe that but unfortunately its just not so with ADHD." KTJ you have hit the nail on the issue-volition. That's what it is-AVD! Thank you! (grin) SUBJECT: Re: TESTS Date: 95-10-12 11:57:55 edt FROM: RH22182 Kathy, I was really glad to see your posts. I have a daughter (5) who is just about to be observed by the school counselor/psychologist. It sounds as though Kinsey and Travis have alot in common. In my preparations I have read Driven to Distraction, and Answers to Distraction. These are both very good books. Fortunately, or unfortunately, the books also seemed to have confused the issue with me. Kinsey doesn't really meet all the suggested criteria, but the ones she meets (impulsivity, fidgetiness) she REALLY meets. After speaking with the counselor, who is herself and adult with ADHD, I think we may need to go further in the evaluation process. I have such mixed feelings. On one hand, it would be nice to have a label put to her that will enable us to get her the help she needs. On the other hand, it would be nice to think she just has some maturing ahead of her. I would be interested in any input from anyone. Thanks! SUBJECT: Re: TESTS Date: 95-10-13 09:26:45 edt FROM: Kthirty RH - Yes, it sounds like you and I are on the same path! I took Travis to a woman who tests for homeschoolers, some ADD-ADHD people I know school at home. I'm not ready for that yet. I just wanted to get any input! Our appt with someone in the field is not until mid-Nov. She thought he may have a possible Central Auditory Deficit. I went over and read that board this a.m. Some of what she said made sense. I am still collecting information and looking everywhere. She worked with him for about twenty minutes and he never stopped moving the entire time. She kept having to call his attention back to him. She did not have any opinion on ADD-ADHD. Best of luck with Kinsey! Kathy SUBJECT: Re: TESTS Date: 95-10-13 21:49:21 edt FROM: SusanS29 When talking about central auditory issues make sure that the child has been tested by someone who doesn't have a strong bias toward that diagnosis, because ADD (especially the non-H type) often mimic it. SUBJECT: Re: TESTS Date: 95-10-14 08:26:35 edt FROM: Kthirty Good point Susan, The more I read and spend time on the board the more I am looking forward to our appt. in November. By the way she mentioned the Feingold (sp?) diet and I already knew what she was talking about due to you all! Kathy SUBJECT: Re: TESTS Date: 95-10-14 20:28:57 edt FROM: SusanS29 Kathy I have to be honest with you. I don't know a *single* bona fide psychologist who starts out with the Feingold diet. There are people out there who are extremely suspicious of anything that smacks of "the sytem." They tend to gravitate *first* toward more experimental approaches and tend to look with disdain at things that many others recognize as proven. Am I right this child hasn't been diagnosed yet? The Feingold Diet, questionable though it is, was never intended for anything but ADD/ADHD. I'm sorry, but I don't think any responsible diagnostician would be talking about interventions before a diagnosis had been made. SUBJECT: Re: TESTS Date: 95-10-14 22:38:51 edt FROM: PattiMcHam "When talking about central auditory issues make sure that the child has been tested by someone who doesn't have a strong bias toward that diagnosis, because ADD (especially the non-H type) often mimic it." Thanks for making that point!! In my practice (speech, language & listening), I see a great number of children who come to me already diagnosed with central auditory processing disorders (CAPD) who are in fact, really ADD. The truth is ADD children as a rule are not able to attend to the CAPD testing appropriately and end up doing poorly. For a parent who wants to avoid an ADD label or medication, this may seem more palatable. But really, a true CAPD case does not respond to medication and is not ADD. However, some inexperienced clinicians do not always make that distinction. They merely look at the scores on the tests, not how or why the child scored poorly. SUBJECT: Re: TESTS Date: 95-10-15 03:31:25 edt FROM: PeterCB55 Patti, I would second your point. I am concerned that this "label" has been layed down, sometimes in situations where test "scores" are being interpreted by individuals who fail to examine the qualitative aspects of the childs' performance. Another all too troubling finding is that some will interpret a single test score as an indicator of the presence of deficient language processing without ever bothering to establish this finding through other methods and measures. Children with attention deficits are notorious for their variable performance on measures of language processing, comprehension and expression. But, the variability in their performance is usually cross situational, and linked to fluxuations in concentration, working memory, attention to details, distractibility, weaknesses with retrieval, disorganization in planning and execution, and the attentional requirements of the task at hand. Children with basic language processing difficulties tend, in my limited experience to show more pronounced problems with the language aspects of tasks vs. the attentional components. These children often show more consistent and sustained effort in the face of increasing task difficulty, while the reverse is true for children with primary attention problems. Children with language difficulties have been known to sit and effortfully spin their wheels for awhile, while those with ADHD will not. Upon interview, their expressed frustration with "difficult tasks" is often tied to a basic deficiency in decoding or understanding the meaning of language concepts. For children with ADD, they can often grasp the meaning with a second pass or a little more attention to details. In short, repetition and rehearsal tends to more reliably moderate the effects of inattention and distractibility compared to deficient language skills. Obviously the challenge resides from a diagnostic perspective with the overlap between children with processing weaknesses and those with ADD without hyperactivity. Yet, those with ADD- usually display intact language skills, that can be more readily seen if you give them enough time, structure and reason to organize their thoughts. The bottom line, would seem to be a healthy dose of thoughtfullness and care when considering these factors. Respectfully PeterCB55 SUBJECT: Re: TESTS Date: 95-10-15 08:26:07 edt FROM: RH22182 This board is great! I feel as though I can be well informed prior to my daughter's testing. Can anyone tell me the possible relationship, if any, between what my daughter's speech therapist called an expressive speech problem and a potential ADD diagnosis? The speech therapist really didn't think there should be a diagnosis of ADD, however the kindergarten teacher wants to refer my daughter for a child study due to excessive "fidgetiness and impulsivity". The teacher also said that while Kinsey seems to not be paying attention, she can always answer questions with the correct response, as though she were really listening all along. She also wants to refer Kinsey to an enrichment program because she seems to be very bright, and needs some stimulation. When I read Driven to Distraction, there seemed to be many areas of ADD that accurately describe Kinsey's behavior. Unfortunately, I became confused because not everything applied. That's why I wonder if Kinsey's problem with language could be causing her to act the way she does sometimes. Any suggetions would be most helpful. The school's psychologist, and counselor will begin their observations of her this week. They will make recommendations for further testing based on these observations. Thanks! Cindy SUBJECT: Re: TESTS Date: 95-10-15 10:28:00 edt FROM: SusanS29 "In my practice (speech, language & listening), I see a great number of children who come to me already diagnosed with central auditory processing disorders (CAPD) who are in fact, really ADD. The truth is ADD children as a rule are not able to attend to the CAPD testing appropriately and end up doing poorly." We worked this to the child's advantage a couple of times. Since we had to find both a perceptual deficit and an academic lag, we could diagnose the child as "auditory perceptual impairment" resulting in (reading, math or written expression). While several of us were sure the real culprit was ADD we were able to get the child some help. Now that we have the power to get children with ADD help via 504 plans I don't like what we did at all for future students. The best diagnosis is always the most accurate one. Folks, Patti will be the guest speaker at my "ADD/LD Schoolhouse Chat" on Nov. 4 at 4PM Eastern (3PM Central, 2PM mountain and 1PM Pacific). Watch out for the end of daylight savings time the weekend before... she'll be speaking from her expertise in this area and, hopefully, talking about her new book. Patti I have that book at work, and I'm at home right now, so would you please post the name of it for us? It's a marvelous book, one we have all needed for a LONG time. SUBJECT: Re: TESTS Date: 95-10-15 10:34:18 edt FROM: SusanS29 "Can anyone tell me the possible relationship, if any, between what my daughter's speech therapist called an expressive speech problem and a potential ADD diagnosis? The speech therapist really didn't think there should be a diagnosis of ADD, however the kindergarten teacher wants to refer my daughter for a child study due to excessive "fidgetiness and impulsivity". Sometimes children with language difficulties *look* as if they have ADD to a classroom teacher. Think about it. If you were in a lecture, and every fifth word was in Greek (literally) -- soon you would not understand what was saying. Your attention *would* wander. That wouldn't mean you have ADD. It only means you don't speak Greek. Also I have seen many children who were not strong auditory learners (that includes both children with language problems, children with auditory perception problems-I separate the two in my mind-and children with ADD) -- sometimes physically turn away from the teacher when there's nothing to look at. Sometimes they've tuned out, but sometimes it seems to help them focus on what they have to hear. "Unfortunately, I became confused because not everything applied." That's how it is with ADD. Everything never applies to everyone. You have to go with the preponderence of the information. Just make sure they do a broad-based evaluation, because there are many possible explanations (including she's a bright, fidgety kid with no real problems). If they are going to rule ADD in or out, confirm in your own mind that they know enough about it to do that, or seek a second opinion from an outside specialist on that point. Schools vary greatly in their ability to diagnose ADD. SUBJECT: Re: TESTS Date: 95-10-15 10:41:08 edt FROM: Kthirty Cindy, I second you on this board! Also am reading Driven to Distraction. Travis sounds more and more like Kinsey. His teacher said he showed the most unique problem solving skills she had ever seen. His constant movement during circle time and wandering attention does not seem to stop him when it comes to understanding and finishing the days task. Susan and Peter and Patti - Thank you for your input. And for taking the time and energy to go over stuff I know you've explained patiently to worried parents time and time again. Kathy SUBJECT: Re: book for parents Date: 95-10-15 23:02:40 edt FROM: PattiMcHam Well Susan, (and anyone who is interested) the title of the book I wrote is, "Childhood Speech, Language, and Listening Problems: What Every Parent Should Know". It is published by John Wiley and Sons, 1995. Your libraries may have it, so you might want to check there first. It can be ordered from any bookstore and is carried by Barnes and Noble. I also wrote a program for teaching listening in the elementary classroom called, "It's Time to Listen". It is published by Communication Skill Builders in Tucson Arizona. I hope to hear from lots of you on the Online Chat Oct. 28th! Patti SUBJECT: Re:Moved Messages Date: 95-10-16 11:22:43 edt FROM: DN92667 My daughter is also on the cylert. She was on ritalin for about a week and was put back on the cylert due to the wearoff effects. She does very well on the cylert. It's only once a day and she doesn't have to worry about leaving class at school to go to the nurse. She used to feel strange to go there during class when all the other kids were at recess. SUBJECT: Re:all my children Date: 95-10-16 11:43:16 edt FROM: DN92667 We did the same thing. My daughter was diagnosed 2 years ago with ADHD and the best thing that you can do is learn all you can about it so that you can be your childs advocate. Remember, they can't stick up for themselves in a lot of situations so you have to know as much as you can so that you can do it for them. SUBJECT: Re: TESTS Date: 95-10-16 11:50:38 edt FROM: DN92667 There is also a book by the same people called "Answers to Distraction" which deals with how to cope and handle the child. They are both excellent books. SUBJECT: Re: TESTS Date: 95-10-16 13:53:48 edt FROM: RH22182 Thank you , Susan for the input. As far as the school's ability to determine whether or not ADD is present, they don't. The school simply makes a recommendation as to whether they think the child should be further tested privately in ADD situations. If is is a question of just about any other learning disability, the school will make the determination, but with ADD or ADHD, they let the parent deal with pediatricians, psychologists, or whoever the parent feels comfortable with. I plan to shop around for someone reputable should the school recommend that I have Kinsey tested further. If anyone knows of a well respected psychologist, or other professional in the Northern Virginia, Washington D.C. area, I would appreciate the referal. Thanks again for the information. This has been most helpful! SUBJECT: Re: TESTS Date: 95-10-16 16:34:01 edt FROM: SusanS29 "As far as the school's ability to determine whether or not ADD is present, they don't." In fairness, it depends on the school district. Some do a pretty good job. Although ADHD is considered to have a strong medical component, diagnosis is based on behavior, so many believe a psychologist (including an informed and trained school psychologist) competent to diagnose ADD. However, in reality most school districts aren't all that well-trained in diagnosing ADD, and almost always an outside evaluation is a good idea, in my opinion. SUBJECT: Active alert Date: 95-10-17 22:40:59 edt FROM: Joanie L49 I'm familiar with Add, but can anybody give me sme info on "active-alert" children? SUBJECT: Re:Active alert Date: 95-10-18 00:51:06 edt FROM: SusanS29 Can you give more information-an example of precisely how it's used? There is one researcher who uses that term but right now I can't recall who it is... :/ SUBJECT: Re: TESTS Date: 95-10-18 06:48:29 edt FROM: Ratatat << If anyone knows of a well respected psychologist, or other professional in the Northern Virginia, Washington D.C. area, I would appreciate the referal.>> I understand that Georgetown University Medical Center has a good group working with individuals with ADD/ADHD. SUBJECT: Re:ADD & LD RAlv. 10173 Date: 95-10-19 22:17:38 edt FROM: RAlva10173 My child is on 50mgm of Ritalin a day. @0mgm in the morning prior to school, 15mgm at school, 10 in the afternoon for homework and study and then 5mgm at bedtime for settling down time and to help her sleep. She has been on this doseage for approx. 4 yrs. now and is doing well. Lots of Family Pract. anf Peds. are afraid to rx such a large dose but perhaps you might want to consider this. SUBJECT: Re: TESTS Date: 95-10-20 17:03:22 edt FROM: Bre5 To Patti: Could you help me understand my son's diagnosis a little better? He just turned 8 and is in 2nd grade. He was diagnosed at 3 with severe expressive/receptive language delay, also severe articulation problems. He was again tested this past year at a speech/hearing center at a university, as well as by a neuro-pschyologist. He is now diagnosed as ADHD, CAPD (severe), and severe expressive and receptive and articulation delays. They talked together and decided that he definitly has both ADHD and CAPD, not one or the other. I sometimes wonder if they came to this agreement because the audiologist (PhD) and the neuro-psychologist (also PhD) both believed that their individual diagnosis was right and so decided to compromise on the double diagnosis. My questions are: 1. Should he have CAP testing again while he is taking Ritalin to see if the results are different? (He was on Ritalin only while he had the speech/language testing, and his scores were still severe.) 2. (This is more for Susan.) I have read that there is research that Ritalin actually helps *anyone* to improve and concentrate. (I can't remember if I read it on AOL or on the World Wide Web. I'll try to find out.) If this research is true, then how can we say that a child who improves by taking Ritalin did not have CAPD in the first place? 3. Is there any more definitive way to know if he has one or both of these disorders? Or does it even matter as far as the methods of teaching in school are concerned? SUBJECT: Re: TESTS #2 Date: 95-10-20 18:18:44 edt FROM: Bre5 I want to add to my last message that it is wonderful to have experts like Susan, Patti, and Peter who can answer our questions and give us so much insight. Also, I bought Susan's book TAMING THE DRAGONS, REAL HELP FOR REAL SCHOOL PROBLEMS during the summer and found it extremely helpful and I'm now sharing it with his teacher. I am going to Barnes and Noble tommorrow to buy Patti's book about childhood speech problems. I have often looked for a book on this topic! I'm still trying to understand why my son has all these severe language related problems when at the same time he is so bright and creative and enthusiastic about everything! SUBJECT: Re: 20/20 broadcast 10-20-95 Date: 95-10-21 09:04:39 edt FROM: Kthirty Did anyone else see ABC's 20/20 broadcast on Friday, October 20, on Ritalin? The main topic of the broadcast is the abuse of Ritalin in the non-ADD community. It has become a "drug abuse" problem. School children are selling it in middle school, it shows up at High School parties, one boy died after snorting it! They showed footage of people breaking into pharmacies to steal it. They also showed parents and grandparents selling their kids medicene to an undercover agent. In one school two teachers were fired for getting into the children's drug supplies and stealing it. As a mother whose child is to be diagnosed in November this report scares the dickens out of me. One thing to note, the experts always said that Ritalin used for the treatment of children with ADD was a safe and helpful drug. Any other comments on the broadcast? Kathy SUBJECT: Re: 20/20 broadcast 10-20-95 Date: 95-10-21 10:59:35 edt FROM: RRnFL How about the Merrow report on PBS? Any CHADD people out there burning their membership cards?? Among other things, the show highlighted the conflict of interest in CibaGeigy's (Ritalin) financial support of CHADD. Personally I found the show intelligent and revealing. Anyone else see it? Francine SUBJECT: Re: 20/20 broadcast 10-20-95 Date: 95-10-21 11:28:53 edt FROM: RH22182 Like Kathy, I too have a child to be diagnosed soon, so I was very interested in watching. I think the show took great efforts to show that the drug does indeed help those for whom it is prescribed, and that the problem lies in the fact that too many people have easy access to it and abuse it. I had no idea that CibaGeigy has a financial interest in CHADD, and I would be lying if I said that it doesn't concern me. Unfortunately, my husband who has already made up his mind that our daughter will not take Ritalin saw the broadcast and really cemented his position in that regard. I'm not looking forward to the ensuing discussions in our house should we be told our daughter does in fact have ADD, and may need to take Ritalin. -Cindy- SUBJECT: CHADD's Response to Merrow Date: 95-10-21 11:52:48 edt FROM: Ratatat Copied from CHADD Home Page World Wide Web: File: C:\CHADD\WWW\PBS-RESP.HTM Copyright (c), 1995 CH.A.D.D. Edited by Phillip Bernstein, Member HTML Writers Guild Co-coordinator CH.A.D.D. of Bay County Last Revised Using Hotdog HTML Editor: 7:15 AM on 10/20/9 PBS' Merrow Report Inaccurate on ADD Says National Parent Support Group PBS' Merrow Report Inaccurate on ADD
Says National Parent Support Group If, after reading this article you are as concerned as we are, please express your opinion in writing. Send your E-Mail to both :viewer@pbs.org,merrow@mailhost.oa.net"> PBS (viewer@pbs.org) and The Merrow Report (merrow@mailhost.oa.net). PLANTATION, FL (October 13) CH.A.D.D. (Children and Adults with Attention Deficit Disorders), the national support organization for individuals living with attention deficit disorders (ADD) today characterized a PBS program about ADD as filled with "inaccuracies and misinformation." Discussing The Merrow Report's "ADD: A Dubious Diagnosis?", to premiere on PBS affiliates October 20th, CH.A.D.D. Executive Director Leslie Roth said, "Rather than give this hidden disability the respectful consideration accorded other disorders, The Merrow Report discounts both ADD and those who live with it. The program does not reflect the substantial body of research demonstrating that the symptoms of ADD arise from significant neurobiological differences and promotes the myth that ADD is merely a bad excuse for bad kids and bad parents."

"We are very disturbed by this upcoming episode of The Merrow Report," Roth continued, "in great part because when the producers of the program first approached CH.A.D.D., we were promised a fair examination of ADD, its treatment and diagnosis. We worked with the producers, providing information, documents and interviews, but we believe they had reached their conclusions prior to the interviews."

CH.A.D.D. released a point-by-point refutation of the most troubling inaccuracies made in The Merrow Report. The four-page document points out, for example, that the program does not include an interview with any of the leading researchers in the study of ADD.

"We believe that we have an obligation to CH.A.D.D. members and others who have not yet found CH.A.D.D., but would benefit from our services and information, to set the record straight by addressing the inaccuracies and misinformation in The Merrow Report," Roth said.

CH.A.D.D. is the national organization of 35,000 members and over 600 local chapters nationwide dedicated to improving the lives of individuals with ADD and of those who care for them. CH.A.D.D. maintains a support network for parents of children with ADD; provides a forum for continuing education of parents, professionals, and adults with ADD; acts as an information resource at the community level; advocates appropriate education services for children with ADD; and operates a toll-free phone line for information about ADD, 1-800-233-4050.

CH.A.D.D.'s Analysis of
The Merrow Report, "ADD: A Dubious Diagnosis?"

Children and Adults with Attention Deficit Disorders (CH.A.D.D.) has had the opportunity to view a version of The Merrow Report, "ADD: A Dubious Diagnosis?", scheduled to premiere on many PBS affiliates on October 20. This analysis responds to the most troubling inaccuracies and misinformation contained in The Merrow Report.

CH.A.D.D. is a nonprofit, public service organization that exists to support and serve those children, parents and adults who know how ADD can affect the lives of individuals with ADD. CH.A.D.D.'s mission is to improve the lives of individuals living with SUBJECT: Another Professional Response Date: 95-10-21 11:56:48 edt FROM: Ratatat Journal of Child and Adolescent Psychopharmacology Letter from the editor concerning The Merrow Report Charles Popper, M.D., Editor McLean Hospital Harvard Medical School 115 Mill Street Belmont, Massachusetts 02178 October 1995 An unfortunate and unfair allegation was leveled against an important volunteer organization of concerned parents who work together to help children who have a particular medical disorder. On October 20, 1995, The Merrow Report released a segment called "Attention Deficit Disorder: A Dubious Diagnosis?" which was broadcast on many stations nationwide by the Public Broadcasting System (PBS). Oddly, the first part of this report was a balanced and thoughtful description of attention deficit disorder (ADD), medical treatments, and positive and negative aspects of treatment. In view of the producers' ability to provide a responsible journalistic exposition, what followed was all the more surprising. John Merrow, the narrator of the show, speaking as if he were exposing a dirty secret, then took aim at the largest, best-organized, and most productive national organization of parents whose children have attention deficit disorder. CH.A.D.D. (Children and Adults with Attention Deficit Disorders) is an organization of over 600 local chapters that provide guide guidance for thousands of parents, friends, teachers, and health care professionals who themselves guide and encourage the development of millions of children and adults with ADD. The combined efforts and support of this group has provided tremendous help to an enormous number of people. CH.A.D.D. is a fine example of the growing number of "lay" organizations targeted toward specific medical disorders over the last two decades. These volunteer organizations are concerned with advancing research, fostering public and professional awareness, distributing information, and especially with providing support for individuals and families who are dealing with a particular medical disorder. These are not sinister organizations, nor are they dangerous. These volunteer organizations are providing services that go beyond the scope of the medical profession and the government, and extend vastly beyond the reach and resources of even the very largest private corporations. It then should come as no surprise that financial support-particularly of the educational functions-for these groups comes from pharmaceutical houses, hospitals, schools, welfare agencies, publishers, and professionals who themselves provide services to patients with these diseases. Indeed, it has been argued for many decades, and currently by both "conservative" and "liberal" leaders, that it is a responsibility of individuals and corporations who derive a livelihood or profit in the care of medical patients to volunteer time and money to advance the general welfare of these patients. Then comes The Merrow Report, declaring that CH.A.D.D. has an undisclosed financial "relationship" with CIBA-Geigy, the manufacturer of the Ritalin brand of methylphenidate (a medication used in the treatment of ADD). The Merrow Report makes three significant errors: 1) it overtly implies that there is something improper about a pharmaceutical house donating money to a major national lay organization, because increased public awareness and education about this disorder will eventually contribute to company profits; 2) it pretends (I can think of no other word) that CH.A.D.D. and CIBA-Geigy have attempted to make a secret of this pooling of their shared interests, and 3) it is globally disparaging of the honesty, integrity, and value of CH.A.D.D. CONTINUED..................... SUBJECT: Another Prof. Response #2 Date: 95-10-21 11:57:51 edt FROM: Ratatat ..............continued: Of course, volunteers contribute efforts according to their interests and should work together to provide coordinated efforts to meet societal challenges. Philanthropy is and should be distributed according to the interests of the philanthropists. Responsible corporate philanthropy will naturally be aimed at supporting the goals that are consistent with other aspects of the corporate philosophy. Of course, not everyone knows what corporations contribute money to public or volunteer institutions: Do most physicians know what corporations contribute money to the American Heart Foundation? Do most government administrators in the FDA know who contributes to Red Cross? Do you know what corporations contribute to the Girl Scouts? If you don't know, would you really think that the corporations or the Girl Scouts are keeping it a secret? The Merrow Report did. The fact remains that many parents and professionals who work with children are 20 years behind in their understanding of attention deficit disorders, and that many children and adults do not receive the treatment they need. Scare journalism is not helping. CH.A.D.D. is. Frankly, the allegations, ignorance, and appalling lack of journalistic integrity that The Merrow Report exemplifies are of relatively little concern, because there is no doubt that reason will eventually prevail over this trivial, though blatant violation of truth. My main concern is that some children and parents who are seeking help will be pulled toward groundless doubts about CH.A.D.D., medical treatments for ADD, and ADD itself. This is not what children and their parents need. This show took a common and unremarkable fact and attempted to turn it in to a scandal. We know PBS can do better. Charles Popper, M.D. Editor Journal of Child and Adolescent Psychopharmacology CH.A.D.D. Online! Homepage SUBJECT: Re: 20/20 broadcast 10-20-95 Date: 95-10-21 11:59:12 edt FROM: Ratatat Here is a copy of the letter I posted in the ABC area to 20/20: The piece that was aired last night (10/20/95) on Ritalin abuse was extremely inaccurate and biased. Ritalin has NO half life, so it leaves the system within hours of ingestion...one "withdraws" from it every night when they sleep! Your pharmacist was a complete hoax in my estimation. If he really did snort Ritalin he would be having SERIOUS pulminary complications from the talc binder he would inhale with it. He would also not weigh 300 pounds. He did say he had a problem with drugs, and maybe he foolishly *tried* Ritalin once...but there is no way that he did what you suggested and lived to talk about it without the use of a respirator. It sounds to me as though you have been duped by groups with an agenda that is determined to undermine the use of Ritalin as a safe and effective treatment for Attention Deficit Disorder. Stimulant medications have been used to treat this disorder since 1937, and have been studied diligently since then. There is more research on the pediatric use of stimulant medications to treat Attention Deficit Disorder than another medication used in pediatrics. All the research has indicated that used in the appropriate therapeutic doses recommended for Attention Deficit Disorder is it entirely safe, and beneficial to more than 80% of the people who take it. 20/20 sensationalizing the abuse of Ritalin by the very few who mis-use it has done a grave dis-service to many, many families who have children who really are benefiting from the addition of Ritalin to their overall plan in addressing the symptoms that come with Attention Deficit Disorder. SUBJECT: Response to Merrow Date: 95-10-21 12:01:52 edt FROM: Ratatat Posted from another area on AOL: SUBJECT: ADD_Not_Real? Date: 95-10-20 20:41:02 EDT FROM: Ledingham Topic: Does Attention Deficit Disorder Really Exist? Author: Steven Ledingham ___________________ Hello: I as many others are feeling concern about the upcoming PBS special on Friday (10.20.95) about ADD. This program entitled "ADD-A Dubious Disgnosis" may prove to be harmful to the ADD community, due to it's apparent suggestion that ADD does not really exist. I have responded by writing this commentary, which I encourage you to forward to other adults with ADD, either by using the Electronic mail system, or printing out hard copy and giving it to your associates. This commentary will also be available soon on the ADD world wide web site located at http://128.196.15.10 This commentary expresses only my thoughts on this matter, and as yet is not intended to represent the point of view of any organization or individual other than my own. Feedback is encouraged, Sincerly, Steven Ledingham Ledingham@aol.com Sled@tikal.biosci.arizona.edu ------------- ADD-Myth or Reality: Welcome to 1995, along with it's many challenges we are also again faced with those people, who for whatever reason doubt the existence of Attention Deficit Disorder. I suppose that Galaleo, Aristotle, Newton, Einstein and many others must have felt something similar to what thousands of adults with ADD are now experiencing. It is easy to understand why at one time in history, people felt the Sun was in orbit around a flat Earth (of course at the center of the universe) and that the moon and stars controlled our destiny. At many points in history we were lacking measurable scientific evidence that would prove these conditions to be incorrect. This is not the case with Attention Deficit Disorder. We have verifiable proof, both in the form of behavioral history, and medically measurable data, that very effectively demonstrate the existence of the condition know as Attention Deficit Disorder. Medical techniques have repeatedly verified levels of only 10 to 20 % activity, in neurotransmitters which we know are critical to controlling impulses, and effectively remembering information. As a member of the Board of Directors of the National Attention Deficit Disorder Association over the last five years I have interacted with thousands of adults who struggle with this learning challenge. Those people for the most part are hard working, honest individuals who more than anything else want to do something positive about ADD and the negative impact it has upon their lives. The idea that we would "make up" this handicap is totally out of the question. Many of us have been aware of this handicap since our childhood, and spent years trying to discover what was wrong so we could fix "it. The large majority of adults I talk with are very bright and highly motivated, but until they learned about ADD, and how to compensate, experienced failures in school, the workplace, and in relationships. Upon discovering that ADD is a biologically based condition, we have been able to address it both with medication, and by modifying our behaviors. After years of failure and shame, being told we were "lazy, crazy and stupid", and cited for our lack of "willpower", adults with ADD finally have a method to improve the quality of our lives, and those we interact with. To question the existence of this condition is not only scientifically inaccurate, it promotes the continued suffering and humiliation of the thousands, if not millions of adults who have Attention Deficit Disorder. Steven Ledingham, 10.20.95 SUBJECT: Re:ADD & LD RAlv. 10173 Date: 95-10-21 14:29:59 edt FROM: SusanS29 RAlva the way to look at this is to see how much is active at one time. The highest one-time dose is 15, which isn't excessive... so... your doctor is forward-thinking enough that ADD is not a switch turned on and off at the schoolhouse door. SUBJECT: Re: TESTS Date: 95-10-21 14:35:44 edt FROM: SusanS29 "I sometimes wonder if they came to this agreement because the audiologist (PhD) and the neuro-psychologist (also PhD) both believed that their individual diagnosis was right and so decided to compromise on the double diagnosis. " Ask them. In particular the neuropsychologst knows whether he or she saw ADD traits when the CAPD was not confounding the results. I can't imagine that a neuropsychologist would compromise on a diagnosis... there would be no point. "1. Should he have CAP testing again while he is taking Ritalin to see if the results are different? (He was on Ritalin only while he had the speech/language testing, and his scores were still severe.)" If you can afford it, it might be worth the effort... but I don't think the CAP testing would move into the "normal" range, so there might not be any point to it. However, make sure his medication is always effective when he's receiving remediation for his other difficulties. "2. (This is more for Susan.) I have read that there is research that Ritalin actually helps *anyone* to improve and concentrate. (I can't remember if I read it on AOL or on the World Wide Web. I'll try to find out.) If this research is true, then how can we say that a child who improves by taking Ritalin did not have CAPD in the first place?" Because the improvement in a person without ADD is teeny-tiny and insignificant (except to tell us the med works the same way in all people, an important breakthrough in knowledge)... and in a person who has ADD *and* responds to Ritalin, the improvement is often dramatic and important. If you have a teeny-tiny headache and you take an aspirin, and it goes away, that's a very small gain. However, if you have a pounding headache, and you take an aspirin and it goes away, *that's* real help. "3. Is there any more definitive way to know if he has one or both of these disorders? Or does it even matter as far as the methods of teaching in school are concerned?" It matters in your case because of the expressive- language delays, which are affected by the CAPD *and* -- likely-the ADD. People who test for CAPD are not trained to recognize ADD, but neuropsychologists are trained to recognize both. I think you can have confidence in the diagnosis you have. SUBJECT: Re: TESTS #2 Date: 95-10-21 14:36:56 edt FROM: SusanS29 "I am going to Barnes and Noble tommorrow to buy Patti's book about childhood speech problems. I have often looked for a book on this topic!" So have I, Bre! It's a wonderful book, and I think she has managed to make these language-related issues understandable for parents *for the first time.* It's an important book. I hope lots of parents *and schools* buy it. SUBJECT: Re: 20/20 broadcast 10-20-95 Date: 95-10-21 14:43:26 edt FROM: SusanS29 "It has become a "drug abuse" problem. School children are selling it in middle school, it shows up at High School parties, one boy died after snorting it!" More than one person has died after snorting it. There's documented cases of teens who ground it up and snorted it and got *emphysema* (25% died in this medical, documented report) because Ritalin is bound with talc, extremely irritating to the lungs. THAT SAID-I also know of college students who heard that they could get high by injecting ground up banana skin. Several died of blood poisoning from that, but we still sell bananas. "As a mother whose child is to be diagnosed in November this report scares the dickens out of me. One thing to note, the experts always said that Ritalin used for the treatment of children with ADD was a safe and helpful drug. Any other comments on the broadcast?" I ask you to think about what you saw (I saw it too.) They interviewed one adult who tried abusing Ritalin. He didn't get high. He described a very unpleasant sensation; he said he felt as if his eyes were going to pop out. Unfortunately, those who choose to abuse drugs will now *believe* Ritalin causes a high, even though it truly does not. This means Ritalin *will* become a street drug. SO... you will need to keep careful track of your son's medications. I know of some college students who were sold oregano instead of marijuana. They proceeded to *believe* they were high, and they *acted* high. But they weren't. They got arrested for posssion, but it got thrown out because oregano isn't a controlled substance... pretty embarassing for them! This med will not make your child "high," and it isn't addictive. The "addictive" behavior described was actually "compulsive" behavior-some drug abusers will try anything, and more and more of it... Ask the doctor to do a search of the *medical literature.* If your doctor can find one *documented* case of Ritalin addiction I'll change my tune in a nano-second, but I've looked hard and long and never found a single documented report. Ask your doctor. SUBJECT: Re: 20/20 broadcast 10-20-95 Date: 95-10-21 14:46:20 edt FROM: SusanS29 " Among other things, the show highlighted the conflict of interest in CibaGeigy's (Ritalin) financial support of CHADD. Personally I found the show intelligent and revealing." If that's a conflict of interest, then we'd better fold up all our cancer research, because most of it is funded by drug companies searching for drugs they can manufacture and sell for the treatment of cancer. It's really a shame that anyone believes the Merrow show; there's been nothing hidden. Anyone who has ever attended a CHADD conference knows that. In fact, the people who did the report knew that, but it makes bigger headlines to pretend that there's some dirty secret. It's too bad. We'll have to fold up most of our research on heart disease also. If this REALLY is a conflict of interest then a lot of valuable connections between industry and related groups that have resulted in a lot of good is ... down the tubes, into the sewer with the Merrow Report. SUBJECT: Re: 20/20 broadcast 10-20-95 Date: 95-10-21 14:47:24 edt FROM: SusanS29 Well, Cindy, there are other quite-effective medications out there. In fact, folks, any "show" on ADD that focuses only on Ritalin when talking about meds is inherently flawed. SUBJECT: Re: TESTS Date: 95-10-21 21:36:44 edt FROM: PattiMcHam Wow, I don't check in for a few days and things are really hopping on this board! It's so wonderful to have so many intelligent exchanges of ideas and information. In response to your question: " Should he have CAP testing again while he is taking Ritalin to see if the results are different? (He was on Ritalin only while he had the speech/language testing, and his scores were still severe.)" I agree with Susan (as usual!). If you could, it might be helpful to do. Did the audiologist who made the CAP diagnosis say which specific subtests showed difficulty? The type of treatment that would be recommended would depend on the nature of the scores on these subtests. There are some therapeutic techniques for CAP kids that I have found useful for ADD children regardless. For example, improving the child's ability to attend to a person's voice in an increasingly distracting and noisy environment. The therapy for CAP might be beneficial, even if the ADD is the root cause. As a parent though, I'd want to have a baseline *with* the medication to know if the diagnosis still holds, and if there is improvement, if it was strictly from the medication or the therapy. Yes, I think it is possible to have both ADD and CAP issues in the same child, particularly in a child with a history of sensory integration (SI) problems. That said, I think another important factor at play here is the fact that your child has expressive language delays as well. The CAP test requires the child to repeat back words and sometimes sentences that are played in a set of headphones, in various ways, ie with background noise, parts of the words omitted, and competing words in the left/right ears. If these words and sentences are unfamiliar to a child because of language issues, the ability to remember and repeat them is also severely limited. I forget which board she wrote it on, but Susan made a comparison to a person learning or speaking a foreign language. When I first starting learning Japapnese (and still am) I had to listen to one *word* about 20 times before I could even repeat it back with any skill. I could never have taken a test which required me to repeat these unfamiliar words and phrases under very demanding listening situations. Yet, I don't think I have a Central Auditory Processing disorder. A child with an expressive language problem *will* have difficulty on these tests by definition. I think it is safe to say that your child's ability to listen is compromised at this point. Perhaps there is an element of ADD contributing as well. I would guess that the expressive language delays might be a symptom of the difficulty listening to and processing language. Therefore, auditory therapy for CAP would be helpful anyhow in addition to expressive language therapy. SUBJECT: Re: 20/20 broadcast 10-20-95 Date: 95-10-22 00:42:37 edt FROM: Valsudur I thought the show was interesting but was curious as to some points. Since the medication in California requires a triplicate part form, and it is not extremely easy to get in pharmacies in the North LA area as many don't stock it (nor will hold your form until they can order it), I was surpised that there would be such a surplus for use in the streets (but it is a big country). I wish that the shows would better reflect what ADD is at a technical level and better describe what the medication is supposed to do. Continually saying that it helps people concentrate better and be less impulsive keeps leaving the impression that it is more for child management issues than for medical reason. SUBJECT: ADHD INFO NEEDED Date: 95-10-22 01:01:04 edt FROM: ODEE1 doing a paper in school....Need a descripytion of what ADHD is, causes, symptoms, treatments and how school can help!!! any help or articles that can be forwarded to my e box will be helpful... If anyone wants to write the 3 page typed paper that would be even better ODEE1 SUBJECT: Re:20/20 and CibaGeigy Date: 95-10-22 09:16:38 edt FROM: Kthirty Susan---banana skins!!!! What is it about the human race that we so desire to alter our state of being that we would sink to grinding up banana skins?!!! Anyway...Interesting comments on the "high" in Ritalin. I'm sorry I missed the PBS broadcast. As a parent just beginning to face the issue of ADD the financial contributions from CibaGeigy to CHADD don't bother me in the least. The fact was addressed in the ABC broadcast also. I have a daughter with moderately severe asthma and have been a member of Mothers against Asthma for years. Drug company sponsorship has never stopped them from issuing drug alerts, reporting the facts or calling for change. The organization has personally gone to bat for me and their information has improved the treatment I am able to offer my daughter. Thank God for the drug companies, without one of their drugs my daughter would not be here today. So best wishes to CibaGeigy and I will drop a note to ABC! Kathy SUBJECT: Re:NEW FOLDER Date: 95-10-22 11:04:31 edt FROM: MaicherC Can you direct me to information concerning ADD misdiagnosis specifically? Thanks, MaicherC SUBJECT: Misdiagnosis Information Date: 95-10-22 11:30:50 edt FROM: Ratatat Can you be more specific in what it is you need to know? I don't know of any materials on MISdiagnosis, but I do know of materials on diagnosis. Would that suffice? SUBJECT: Re:Merrow Report Date: 95-10-22 17:53:08 edt FROM: Lizbeth SR It was reading a tabloid at the check-out line!! So what if 11% of CH.A.D.D. funding comes from a grant from CIBA, another 9% comes from other pharmacy companies...that leave 80% of their funding coming from OTHER SOURCES!! This is not enough to be considered a conflict of interest or "partnership". Another person has already mentioned that other support groups accept finacial assistance from companies that a tabloid could expose as a "secret"...but who asks? I have been a member of CH.A.D.D for over 2 years and have found the most incredible support and accessibility to information that is not as readily available through any other source. The information and support has made dealing with this disability much more managable. (There are 2 of us in our home with ADD and our daughter has ADHD) All of us are on one form of Ritalin or another and we are grateful that some of the money we are paying out to CIBA is making its way back to an organization that offers us support and a place to find hope for ourselves and our daughter. This was the first time we watched the Merrow Report, and if their reporting on this topic is an indication of how they report other "facts", it will be the last time we will watch. I can't respond to the 20/20 yet, but it was taped for us and we will view that also. CH.A.D.D. is a great organization! Ritalin is a safe and affective drug when used properly and followed by a physician knowledgeable in its use. The boys interviewed on the Merrow Report were obviously not being followed properly or they would have reported the side effects to the attending physician and the dosage could have been changed or perhaps another drug prescribed. Our daughter has had some difficulties with the sleep and the eating side effects but with the physician we have made changes that allow her to function in a productive way and get the sleep and nutrition she needs to grow. For any parents or adults out there beginning to face this challenge called ADD/ADHD, don't take all of what was reported as truth, it wasn't, it was sensationalism aimed at boosting rating! SUBJECT: Re: 20/20 broadcast 10-20-95 Date: 95-10-22 20:13:11 edt FROM: SusanS29 "I was surpised that there would be such a surplus for use in the streets (but it is a big country)." As far as I am concerned they didn't demonstrate that. They showed *one mother* filling a prescription and then selling it. That's not a huge amount, and they offered absolutely no evidence that it's common. They showed a film of a pharmacy burglary but then said the burglars didn't get any Ritalin! -- My guess is that it was there, but the crooks knew not to bother with it, but that isn't what the TV show said... they only said "They didn't get any Ritalin *this time*..." suggesting-but not supporting the notion-that Ritalin was the reason for the burglarires. SUBJECT: Re:ADHD INFO NEEDED Date: 95-10-22 20:13:54 edt FROM: SusanS29 Go to the library and get a copy of ANSWERS TO DISTRACTION by Hallowell and Ratey. You *are* asking us to write about three pages for you... SUBJECT: Re: 20/20 and CibaGeigy Date: 95-10-22 20:15:01 edt FROM: SusanS29 Oh, great. Now we have to stop asthma research also? You mean other organizations take corporate money? Amazing! (tongue deeply in cheek) SUBJECT: Re:NEW FOLDER Date: 95-10-22 20:15:54 edt FROM: SusanS29 Maicher there's a problem with your request: the people who believe this either have no facts to back their claims up or think "those other people over there" are doing it. SUBJECT: Re:Merrow Report Date: 95-10-22 20:17:36 edt FROM: SusanS29 After you've seen the 20/20 tape please use keyword: ABC here on line and tell them what you think of it. You'll have to go to a couple of submenus but eventually you'll find a folder titled "20/20." Susan SUBJECT: Re: TESTS Date: 95-10-24 19:12:01 edt FROM: Bre5 Patti, thank you for your detailed reply. I bought your new book at Barnes and Noble over the weekend (last copy!) and I'm reading it now. It's great! There is a lot of very informative information about the many kinds of speech disabilities, many types of disorders that I had never known about, and some of the descriptions fit my son so perfectly! I'll post another message in the Speech Language Disorders folder, rather than this folder, later or tommorrow. I guess Speech related discussions should continue there, since this is for ADD/ADHD. SUBJECT: RE: Ritalin/20/20 Date: 95-10-26 10:13:18 edt FROM: A1Richter5 I saw a report on people snorting ritalin as a cheap substitute for cocain. I am hoping that my husband can have ritalin added to his medication, and am wondering if because he abused cocain years ago, that may have anything to do with the decision to put him on it or not. Any comments? SUBJECT: Re:RE: Ritalin/20/20 Date: 95-10-26 15:12:45 edt FROM: Ratatat <> First, understand that snorting gound up ritalin is very dangerous. It is bound with talc. Taking talc into the lungs causes all sorts of permanent damage including pneumonia and emphezyma. Not recommended. Second, the thinking today among docs treating people with a history of abuse is, "why punish the person for using the wrong drug by withholding the right one?" However, a wise doc will monitor such a patient closely, will NOT provide him with a script for 30 days at a time, etc.... Have you doc get in touch with the American College of Addiction Physicians and ask for their stance and recommendations on this. SUBJECT: Re:RE: Ritalin/20/20 Date: 95-10-26 20:19:51 edt FROM: SusanS29 "I saw a report on people snorting ritalin as a cheap substitute for cocain." This had to be largely bogus. I researched the possibility of Ritalin abuse/addiction a couple of years ago as part of a book I wrote on ADD/LD. There was an instance of kids snorting ground-up Ritalin. 25% of them were dead within a month of emphsema, because Ritalin is bound with talc, and talc is *extremely* abrasive to the lungs. Another 50% had their life expectancies severely impaired. I believe the pharmacist tried this; but I did *not* believe the report of kids "doing lines of Ritalin" in the classroom. First of all-did the teacher get a chemical analysis on this? And second of all-why didn't she call the police? If this were common it would be headlines all over the place. Always remember about Ritalin that there are people out there with hidden agendas (ant-psychiatry.) They will float whatever they think people will swallow to get their view accepted. A history of drug abuse is *extremely* common in adults with untreated ADD, and proper medical/psychological management of the ADD-INCLUDING meds, which often reduces impulsive or risk-taking behavior-often helps the person stay "clean." SUBJECT: Re:RE: Ritalin/20/20 Date: 95-10-27 15:36:34 edt FROM: A1Richter5 Thank you for putting that in perspective for me. I myself tend to be gullible about things I'm ignorant about. The media can get a real grip on us at times. SUBJECT: Re:RE: Ritalin/20/20 Date: 95-10-28 00:26:46 edt FROM: PeterCB55 Unfortunately, we live in an era where there is great concern about the "addictive" potential of "drugs" including Ritalin and Dexadrene, which are commonly used to treat the disruptive effects of ADD. Sadly, as Stanton Peele has documented in several books, our culture tends to place unwarrented faith in the assumption that drugs, "cause" addiction, while ignoring the important truth that drugs are used by individuals to moderate affective states, often in specific situations for specific reasons. In particular, where abuse is concerned, we tend to ignore the fact that individuals with abusive tendencies will misuse a wide variety of substances. That Ritalin has been misused by a very small number of individuals, contrary to what the 20/20 program suggested by unfounded implication and inuendo, should not be surprising. However, it is often the far less "exciting" truth that is all but ignored. For the vast majority of children, adolescents and adults who use stimulants there is little or no risk, other than the basic and unexciting side effects to contend with, as weighed against the rather striking benefits obtained. Dexadrene and Ritalin are two of the most well researched medications available. From all that I have been able to read, there is simply no evidence that suggests that it's use as prescribed, for real attention problems increases risk for further abusive tendencies. Rather, proper use of medications quite likely decreases risk through increased self-regulation, which leads to enhanced functioning in social, vocational, and eductional performance. I have assessed and followed a good number of adults with past histories of marijuana and cocaine abuse histories who have been successfully treated with stimulant medications. Common clinical wisdom suggests that with any adult you monitor medication effects with a healthy dose of care and respect for the particulars of the situation. Interestingly, many report that part of the "draw" to marijuana and cocaine was the surprisingly positive impact these drugs in terms of enhanced concentration and "alertness". One of the sad aspects of my work with ex-abusers and ex-addicts is the negative attitudes they have encountered which were held by chemical dependency counselors when it comes to therapeutic uses of medications. I would encourage you and your partner to find a competent adult psychiatrist to work with, who understands and is willing to help you work out some ways to resolve your concerns in a realistic and rational manner. PeterCB55 SUBJECT: add/adderol Date: 95-10-28 16:57:15 edt FROM: Tplammer We are trying to find the right medication for my 9 year old son. He may be ADD, his teachers don't notice it, but a therapist (he has been diagnosed with writing disability) felt he had inattentive type, I see it come and go at home. He also has tics every so often, blinking eyes, shaking hands. The neurologist tried cylert first, and he couldn't sleep, then low dose of ritalin, which started the eye blinking again after a 4 month absence, we are now starting adderol, or its new name amphedimine. Do you have any experience with this treatment, and how borderline add (inattentive) may affect a writing disability? Thanks TPlammer SUBJECT: Re:add/adderol Date: 95-10-29 16:49:17 edt FROM: SusanS29 " Do you have any experience with this treatment, and how borderline add (inattentive) may affect a writing disability? Thanks TPlammer" TP it can *cause* the writing disability. Nothing our brain does involves more ability to organize information than written expression. A *great* many people with ADD (hyperactive or inattentive or whatever) have trouble with Written expression. SUBJECT: Re:add/adderol Date: 95-10-30 21:13:49 edt FROM: Tplammer Thanks for your response on add and written expression. Any hints or guidelines for organizing written expression would be appreciated. Another concern, because of standardized test scores, our 4th grade son was placed in a lower group in a team teaching approach. While there is a certifiable disability in writing, he is gifted in math. He has said the math class is too easy (he is forced into the lower group because of the reading score). His first quarter grades have just come out. Here is the clincher, his grades - all A's, one B in writing, but a C in Math. I'm afraid it's because he has shut down in math due to boredom (he was in the high group with good grades last year), but it is hard to argue this point with his teacher when his test scores don't reflect mastery, even though I know he did the material in 2nd grade. I told him I was more excited about the LA grades than the math, that we know he's good in math, he just has to prove it to his teacher. Everything I read about LD says emphasize the strengths, and I'm afraid we're letting one rot away. Any advice? Thanks TPlammer SUBJECT: Re:meds, side effects, conce Date: 95-11-03 00:48:14 edt FROM: Phylpoet Where can I find the latest research on side effects of ritalin.? I am interested in the use of medication for a high energy kid who can concentrate for long periods of time when he is interested in a subject .As a retired teacher of ADDkids and a concerned grandmother I am concerned about labeling a first grade child as having a neurological problem. I have only been out of the field for two years, and have done recent graduate work. What am I missing? SUBJECT: Re:meds, side effects, conce Date: 95-11-03 14:52:48 edt FROM: Ratatat <> The most emperical work is being done by Russell Barkley in Massachusetts. Anything that he writes is not only well written, but honest and accurate. Before a child should be given medication, a thorough multi-disciplinary evaluation should be completed so that all problems can be ruled in or out - depending on the problems. One thing I will say is that I think it is better for a child with ADD to have a diagnositic label of ADD with proven treatment and support than a moral label of lazy, crazy or stupid. SUBJECT: Re:add/adderol Date: 95-11-03 23:38:10 edt FROM: SusanS29 TP I have an uncomfortable idea to float for you. It's possible that he was good in math in second grade but not in fourth, where it becomes quite complex (long division, for example, which is difficult for virtually everyone but extremely difficult for many kids with ADD). I don't know that this is the case, but the truth is that children's strengths don't always remain constant over several years. SUBJECT: Re:meds, side effects, conce Date: 95-11-03 23:41:24 edt FROM: SusanS29 " I am interested in the use of medication for a high energy kid who can concentrate for long periods of time when he is interested in a subject ." Since all people with ADD can do this, it does not rule out the appropriateness of a diagnosis of ADD. The issue with ADD isn't whether the person can concentrate, but whether the person as control over what he concentrates on and can concentrate on boring or uninteresting tasks *at will.* The person with ADD doesn't have full control over his powers of concentration. When he concentrates on something, he hasn't seleced the task-the task has selected him. So if he's musical he might play his guitar for hours as one young man I know-but seemingly be unable to complete a term paper. "I am concerned about labeling a first grade child as having a neurological problem." While I understand your concern, I have equal concerns about the child who does truly have ADD but who doesn't get diagnosed, because over the years the damage to his self-esteem, social skills and even academic progress can be enormous. SUBJECT: Re:Dexedrine Span Date: 95-11-11 13:23:19 edt FROM: MDBurch My son also changed from Ritalin to Dexedrine and we have the same problems of weight loss and extreme loss of appetite. Fortunately we were able to decrease the dosage from 15mg to 10mg and increased tutoring and counseling. Expensive, but so far working out ok. We are lucky there are no other learning disabilities involved or it might not have worked. SUBJECT: Bre 5 Date: 95-11-11 15:20:11 edt FROM: LTroudy I am sure you will remember me , we talked last summer re: CAP/ ADD and which if either one do they have? My son now 10, has both and I was much more content to stay with the CAP diagnosis for a long time. He was able to hold together all day ( although fidgety ) and then come home and explode like a Pepsi can someone has been shaking all day. In all my reading and teaching I have come to notice a real pattern.... children that have "symptoms" in these three categories- speech and language, poor writing, and "adhd" , all have overlapping neurological delays. Which came first is about as easy to figure as the chicken and the egg story. Some days look so different than other days. We have been saying for years around our house " it's a neurological day ". Meaning, he must have slept differently or something, because he can hardly walk, talk or chew gum. The next day he is fine, The next day his sentence structure is a disaster and the next day is is wired. You can bet - the neurological system is definately a little mis- wired. I have truly come to trusy my motherly insticts. I know that learning doesn't come easy and every time I get it figure out - it changes. Kevin has been on Cylert ( mild does) for 6 months now and I will have to admit that I have seen more consistant growth that HE is responsible for than ever before. I am no longer controlling and manipulating his evironment, teachers and friends. He is communciating and experiencing life like never before. He has " come together" and seen life - finally. I can tell within minutes of being in his presence if he has not had his medication, and he is slowly developing an awareness of this too, as he now lets me talk with him - have eye contact and share with him. We even have minimal anger. He has spent his life ( and probably will continue to ) as a victim, drug to one allergist or another ENT etc. Yes the world is " not treating him fairly " because the world was not and is not going to be "designed for children like him". I too am getting over some of my anger about what's not right for him out there. We just had a conference with his fifth grade teacher (one of the best teachers I have ever met) who couldn't understand why all of his written work was so carelessly done (essay answers ) when the rest of the test was perfect. Even she had to get a lesson on CAP - you speak in choppy phrases, you write in choppy phrases. I to started my journey with therapy at three, but know that the bottom line as they grow - they have to get to know themselves , love themselves and eventually explain themselves to others. Were getting ther and I have to say it is most recently due to the Cylert. ( He still doen't have the diagnosis of ADD ). He is on it to help those lost " neurons " find ther way home ! SUBJECT: ADD/ADHD Behavior techniques Date: 95-11-14 21:49:45 edt FROM: Zac75 I am a self-contained resource room teacher in anelementary school. I have been having behavior problems with a third grade learning disabled child. Other teachers and I suspect that there is also an attention deficit problem. We have tried many things to control his behavior, but nothing seems to work. Does anyone have any suggestions? SUBJECT: Re:ADD/ADHD Behavior techniq Date: 95-11-14 23:02:49 edt FROM: Valsudur I have to dig it up, but I have a paper of '50 Tips in Teaching a Child with ADD'. I'll Email it to you when I've been able to locate it. SUBJECT: ADD Teaching Tips Date: 95-11-14 23:19:25 edt FROM: Valsudur Actually, I just noticed that there are some good resources in the file area here. SUBJECT: Re:ADD/ADHD Behavior techniq Date: 95-11-14 23:39:12 edt FROM: Ratatat <> Since about 70% of the children diagnosed with LD also have ADHD, I would seriously recommend a thorough multi-disciplinary assessment of this child. Attention Deficit Disorder is rarely simple, but you can't start helping until you KNOW what you are working with. SUBJECT: VALSUDUR'S "50 TIPS" PAPER Date: 95-11-15 01:16:27 edt FROM: NOREENS22 IF YOU LOCATE YOUR PAPER, CAN YOU E-MAIL IT TO ME ALSO. MANY THANKS! SUBJECT: Re: VALSUDUR'S "50 TIPS" PAPER Date: 95-11-15 11:11:44 edt FROM: SusanS29 Noreen... please do not post in all-caps. Thanks. SusanS29-Host SUBJECT: Re:NEW FOLDER Date: 95-11-16 00:28:32 edt FROM: WEaton4926 My son is 4 and has been diagnosed ADHD. He takes 25mg of Ritalin and is still very hyper. He is extremely obnoxious when his 7 year old sister comes home. He is an angry boy and can be destructive. I am concerned that there may be other problems with him. He visits a psychologist and psychiatrist twice a month. A friend has suggested a neurologist, others have suggested an allergyst. I want to turn this boy around, so he and the rest of the family have a nice life. Any suggestions on direction to go? SUBJECT: Re:NEW FOLDER Date: 95-11-16 12:15:55 edt FROM: Ratatat << He visits a psychologist and psychiatrist twice a month. A friend has suggested a neurologist, others have suggested an allergyst. I want to turn this boy around, so he and the rest of the family have a nice life. Any suggestions on direction to go? >> Sometimes it is hard to convey to a doctor exactly the intensity of events going on at home or at school. Would you consider keeping a diary of some kind where you could record what happens between visits. If a doctor can see on a daily basis what you are putting up with, and the times of day they occur, they may be able to be much more helpful. Sometimes, all that is needed is an adjustment in the times of day medication is taken, or a sligh tweek of the amount. One thing that I think is imperative, in my own mind, is parent education - parent consultation with a child behaviorist/psychologist. Since it is we who set limits and provide consequences and are models for our kids for doing this, it is most important that we master how to manage our children (and ourselves). Many times things improve drastically when the parents receive the counseling, instead of the child! Also, I hope that your docs really know their stuff about ADD. This is also highly critical, in my opinion. SUBJECT: Re:meds, side effects, conce Date: 95-11-16 14:58:54 edt FROM: LHart12745 Your son is probably experiencing rebound from the medicine. Often, it can be helped by giving him 1/2 of his normal dose after he comes in from school. But you need to discuss that with your physician. Since ADHD has been identified as a neurotransmitter problem, parents need to realize that this does not end at 2:30-3:00 when school ends. It is a life problem, not just a school problem and children that need additional medication, should be recognized. I am a professional in the field, an adult with ADD (I take Ritalin) and have an 18 yr. old daughter that is ADHD who also takes medication. Also pills aren't substitutes for skills and many children identified as ADD have a learning problem too. Often it is not severe enough to warrant special education intervention but that does not mean the child isn't struggling very much. I would suggest finding a Psycho-educational Diagnostician who can look at the way your child processes information and whether some specific educational interventions might not be beneficial to your son. A very good resource book for you and your son would be "The Misunderstood Child" by Dr. Larry Silver. It really tells it like it is and in a way that is easy to understand what is really going on within the child. Hope this has been helpful. Judy SUBJECT: Re:ADD & LD Date: 95-11-16 15:02:06 edt FROM: LHart12745 To the lady who has a son and foster son bedwetting and with ADD, Tofranil is a drug found to be beneficial for ADD but was originally developed to help with bedwetting. You might try talking to your physician and see if he thinks it might be worth switching over to that medication. SUBJECT: Re:ADD Date: 95-11-16 15:10:58 edt FROM: LHart12745 have you heard of a national organization called CH.A.D.D.? There are local chapters all over the states. This is the largest organization of its kind and are very helpful with information concerning Attention Deficit Disorder. All the current information and research is indicatiing that ADD is a neurobiological disorder (a chemical deficit probably inherited) and that is why medication is often extremely beneficial for maximum success. I am a professional in the field plus being an adult with the disorder (I do take medication) and I have an 18 yr. old daughter that also has it and takes medication. One issue that is often overlooked is the high incidence of children having a learning problem along with having ADD. Medication will not teach the skill deficit so that needs to be identified and remediated also. Hope this has been beneficial to you and an excellent resource book is "The Misunderstood Child" by Dr. Larry Silver. Just saw him talk at the national CH.A.D.D. conference in D.C. the 11th of Nov. SUBJECT: Re:NEW FOLDER Date: 95-11-16 19:49:47 edt FROM: SusanS29 I would save the allergy route for when all other courses have been exhausted. I would also make sure he's being treated medically by a true expert in ADD. Ritalin isn't always the medication of choice in a child so young. It's just *possible* that the Ritalin is part of the problem at this age and not part of your solution. At this point your only advantage with a pediatric neurologist would be if the psychiatrist isn't skilled with ADD in young children and the pediatric neurologist is, but you still have some significant behavioral concerns, and the pediatric neurologist is unlikely to have a lot of input for that. Have you seen Tom Phelan's 1-2-3 Magic? SUBJECT: Re:ADD Date: 95-11-17 06:22:29 edt FROM: Ratatat << Just saw him talk at the national CH.A.D.D. conference in D.C. the 11th of Nov.>> I was there too! Hello. And, I went to his pre-conference seminar on Thursday. Were you there too? SUBJECT: I have a question Date: 95-11-21 20:54:20 edt FROM: VVaReZMaN3 What kind of society is this, with people going around and telling children and their parents as early as age 4 that they have a psychological disorder. I'm sorry to burst your bubble, but the diagnosis of ADD/ADHD currently keeps 122,000+ people employed in the U.S. alone, and that is the only sufficient reason for the creation of that "disease". Think about it for a second: If ADD never existed, who would suffer a lower salary or a job loss? Certainly not the people labeled as having it. No, it would be the Child Study Teams, the pharmaceutical companies, the guidance counselors, the special education teachers, and ultimately, the money would be saved by you, the taxpayer. And why, you may ask, am I writing this? It is because I, as a male high school student, fifteen years of age now, was "diagnosed" at age thirteen with this disease. And the criteria for "diagnosis"? I didn't pay attention in my classes (they were boring, and that is a natural response for a human being), and I didn't do homework (There was no need for it: homework is a tool for teaching, which is supposed to cause learning, but I was not on the learning end) Ask yourself one final question. Do these sound like the views of a fifteen year old with ADD, or would you be more likely to think, at first glance, that a professor of psychology wrote it? ADD is a farce, and most of you know it. The End This document was typed in its entirety by VVarezman3, and completely represents his political views of the establishment. SUBJECT: Re:ADD Date: 95-11-21 20:55:50 edt FROM: VVaReZMaN3 Medication should never be used. It is not necessary to use medication to teach self-control. All medication does is make the drug companies rich. SUBJECT: Re:Another Prof. Response #2 Date: 95-11-21 20:58:38 edt FROM: VVaReZMaN3 Congratulations. And if what was said was true, you'd be out of a job. We need an UNBIASED professional opinion. SUBJECT: Re:I have a question Date: 95-11-22 10:39:17 edt FROM: SusanS29 I think you're a remarkably articulate teenager! Something important was missed in your diagnosis. One of the *requirements* is that the problems must make significant problems for the person (not the teachers; not the educational system; the person). You do not sound as if you feel you have significant problems, and at fifteen (even thirteen) someone should have been listening to that. By the way, the criteria also say that your issue (bright and bored by an unstimulating educational environment) must be looked at and ruled out. Of course if the school is evaluating themselves in this regard are they going to say:" "VV doesn't have ADD! Look at us! Our classes are brain-numbing!" (Not likely... grin) That doesn't invalidate all the other diagnoses, though. It certainly doesn't invalidate mine... but then there's no doubt ADD has gotten in my way in some significant ways. SUBJECT: Re:ADD Date: 95-11-22 10:41:45 edt FROM: SusanS29 "Medication should never be used. It is not necessary to use medication to teach self-control. All medication does is make the drug companies rich." I submit that your personal experience may have colored your perspective. Medication has literally saved my children-but then they were carefully diagnosed (it doesn't sound as if you were; see my previous message). If you want me to list what medication has done for them (medication wasn't the only thing done for them, by the way) I will. I'm assuming that after you were badly diagnosed, medication was prescribed? Well... if you *don't* have strep throat, antibiotics won't make you feel better or improve your health, right? That doesn't mean antibiotics have no place... only that they have no place in healthy people. SUBJECT: Re:Another Prof. Response #2 Date: 95-11-22 10:44:20 edt FROM: SusanS29 "Congratulations. And if what was said was true, you'd be out of a job. We need an UNBIASED professional opinion." I think you can call me unbiased, as I came into the ADD field by the back door, knowing little or nothing about it until some of my students evidenced tremendous difficulty attending and concentrating. I developed strategies for them but didn't know what problem I was dealing with for five years after I started doing that. A year after that one of my children was diagnosed with ADD... then my other... then me... and no, there's no doubt about any of us, and getting effective help for what *is* truly a problem for us has turned three lives around. I wish I could have been diagnosed at age nine instead of age forty-nine. SUBJECT: Moved: Tourette's/IEPS Date: 95-11-24 13:01:52 edt FROM: SusanS29 SUBJECT: IEPs on PPTS Date: 95-11-23 20:49:41 EST FROM: OB0 Posted on: America Online How can school systems get away with diagnosing SEM/LD when the childs disease is spelled out by the doctors and the learning disability is unable to process when A happens and automatically C comes into play without B helping out in what could happen or should happen.Why aren't there any law that protect children in the school systems that TS and ADD are very real diseases. What is the actual break down and meaning of SEM, besides socially, emotionally maladjusted? Any help would be greatly appreciated OB0 SUBJECT: Question for SusanS29 Date: 95-12-06 10:12:26 edt FROM: RH22182 Susan, back in September, I picked up some valuable information from you on this board. At the time, my daughter's kindergarten teacher expressed some concerns about her ability to sit still, and her impulsivity. After observation by other people at the school, they all felt that it wasn't that Kinsey can't pay attention, but rather that she is unable to stop paying attention to other things going on in the room at the same time. This does not affect her schoolwork. She is able to tell you what the teacher was saying even though she was paying attention to something on the other side of the room at the same time. She has really come a long way in controlling her impulses to speak out in class since we have called it to her attention. I guess my question is can ADHD/ADD be a reasonable concern given her ability to pick up the information she needs even while seeming not to "be all there"? If it doesn't sound like ADD, is there some other disorder that may be affecting her ability to focus on one thing at a time, or to filter out other things? Her teacher said that rather than an attention deficit, it is almost as though she has an attention overload, and she just can't stop herself from wanting to know everything at once. I have read Driven to Distraction, and numerous articles on ADD, and really only a few of the behaviors on any of the lists I have seen are exhibited. As I said, she is able to pick up everything she needs to and more, even while fidgeting around and looking all over the place. I don't know much about processing problems, but if you could recommend some good materials, I would appreciate it. Thanks - sorry to be so long-winded! - Cindy SUBJECT: ADHD Assessment Tools Date: 95-12-06 12:18:29 edt FROM: MagsE I am a parent of an ADHD teenager, working with our local school district to develop a "protocol" for ADHD assesment. I believe that a complete, multi-team approach allows for a accurate diagnosis, and is not something that should be taken lightly by parent, physician or school. Any protocols out there that I could look at? Like other medical "work ups", our school is looking for a systemized approach to this diagnosis. SUBJECT: Re:ADHD Assessment Tools Date: 95-12-09 20:50:52 edt FROM: Valsudur I think that the DSM-IV guideline is one of the most excellent to use, particularly for a school based evaluation. There is a copy of that in the Special Education Library here. SUBJECT: Re:ADHD Assessment Tools Date: 95-12-10 09:43:29 edt FROM: Ratatat <> Just remember that the DSM-IV guidelines are just that: Guidelines. It is not a diagnostic tool, but rather the criteria that assessment results are checked against after evaluation is complete. SUBJECT: Re:Question for SusanS29 Date: 95-12-10 12:51:46 edt FROM: SusanS29 "I guess my question is can ADHD/ADD be a reasonable concern given her ability to pick up the information she needs even while seeming not to "be all there"?" I can't say this "doesn't sound like ADD." However, it's not making serious problems for her. Just keep a close eye on her. She may be bright, in which case the kindergarten work may not be a challenge for her. So maybe she's bored... or maybe she does have ADD but it does not yet interfere with her ability to learn. Stay watchful would be my suggestion. "Her teacher said that rather than an attention deficit, it is almost as though she has an attention overload..." Part of the problem is that ADD is quite-badly named: "Attention Overload Disorder" might be a better name. I would prefer "Attention Management Disorder," because the real core problem is that the person doesn't have full control over where-and how completely-his or her attention goes. For some things, such as watching TV, it often doesnt' matter if you stick with it 90% of the time and pay deep attention to it. But when the teacher is teaching long division it matters a great deal. Just hang in there, Cindy, and keep a close eye on things. Trust your instincts but realize that there is that possiblity that she may look more like a child with ADD later on when the demands are greater. But maybe not. :) SUBJECT: Re:ADHD Assessment Tools Date: 95-12-10 12:52:49 edt FROM: SusanS29 If there is a copy of DSM-IV in the library I'm sorry but it will have to come down because it is copyrighted. SUBJECT: tutoring method Date: 95-12-10 13:32:37 edt FROM: PKK CW I am looking for information on Ortan Gillingham Method of tutoring a child with ADD. can anyone tell me where I can get information on this method. Thank you PKKCW SUBJECT: ADD treatment Date: 95-12-10 18:26:17 edt FROM: LONALD Could anyone please suggest a good child psychiatrist/psychologist in the Fairfax county VA area? My son, an 8th grader, just doesn't seem to have any drive to excell in school. He has been diagnosed with ADD, meds have not worked (primarily because of side effects) and his self esteem is in the gutter mainly because of me harping on his study habits. Please help! SUBJECT: Re: ADD treatment Date: 95-12-10 21:47:36 edt FROM: Ratatat <> I know it isn't right in your back yard, but it is close....call Georgetown University Hospital and speak to them. THey have an excellent ADD Clinc for children (and now adults too, I understand). One of the country's top ADD doc's is affiliated with Georgetown. If nothing else they might be able to suggest a referral. SUBJECT: Re:NEW FOLDER Date: 95-12-11 15:50:41 edt FROM: LearningMG I'd like to write an article on this topic. Any information that you could give me on this topic (diagnosis/treatment of ADD/ADHD) is appreciated. Email LearningMG SUBJECT: Re:ADHD Assessment Tools Date: 95-12-11 23:01:25 edt FROM: Valsudur If anybody needs a copy of the DSM-IV, send me Email at work and I'll email it to you. Write to randy@opid330.dsd.litton.com SUBJECT: Re:Question for SusanS29 Date: 95-12-12 21:48:34 edt FROM: RH22182 Many thanks, Susan, for your helpful advice. Kinsey's teacher has, in fact, used the words "exceptionally bright" many times when referring to Kinsey. I will continue to keep a close eye on her. I must say, though, it is really hard to have to sit and watch, quite possibly for a year or two, for a problem to become apparent. I wish there was some way to get to the bottom of a potential problem before it becomes a real problem. I guess I am just a bit impatient. Anyway, I will continue to gain insight through this board. All of you are so helpful and informative. - Cindy - SUBJECT: Re: ADHD Assessment Tools Date: 95-12-12 22:24:18 edt FROM: Valsudur The ADD suggested diagnostic Criteria DSM-IV are also available at http://web.cs.mun.ca/~jamie/dsm4.html and the CHADD Web site, http://www.chadd.org SUBJECT: Re:Question for SusanS29 Date: 95-12-13 20:53:42 edt FROM: SusanS29 " I must say, though, it is really hard to have to sit and watch, quite possibly for a year or two, for a problem to become apparent. I wish there was some way to get to the bottom of a potential problem before it becomes a real problem." Well, there is, Cindy. ADD/ADHD can be diagnosed at this age, and academic struggle is *not* a requirement for the diagnosis. AND... if she does have ADD and it gets diagnosed, you may avoid all academic struggles for her. At the very least when they surface, you'll know the likely cause and have a head start on finding a solution. You'll need someone very familiar with ADD, not someone who thinks all with ADD have failing grades and are behavior problems. At the same time you'll want someone who doesn't see ADD under every rock (and in every child he or she sees.) There's some files in the Special Education library that might help you. SUBJECT: Re: Question for SusanS29 Date: 95-12-14 19:46:26 edt FROM: COOKIEM2U Susan, I loved your comment about not seeing behavioral problems and failing grades in ADD children. Was at the Doctors today and we were talking about behavior problems and she made the comment that when a child has ADD and acts up (which is to be expected of an ADD child) that many times the teachers, etc. want to "blow" it all out of proportion. Just thought I'd share with you. SUBJECT: Re:Question for SusanS29 Date: 95-12-16 12:34:53 edt FROM: SusanS29 "Was at the Doctors today and we were talking about behavior problems and she made the comment that when a child has ADD and acts up (which is to be expected of an ADD child) that many times the teachers, etc. want to "blow" it all out of proportion. Just thought I'd share with you." In fairness to the teachers, sometimes what these kids do is *so* irritating. My own daughter (sigh) would walk across the classroom to get a tissue, blow her nose, and just drop it on the floor without even noticing! The teacher found soiled tissues *all over the place.* THAT is irritating. I had another hyperactive student on my caseload who would wear his cowboy boots to school, and then drum his heels on the floor rapid-fire. VERY irritating and startling noise! This same boy (I was observing him this day) was called to the reading circle in kindergarten and got there by walking across the tables. These are low-level problems, but they become even more irritating because none of the teacher's behavior management tricks work on these children. So she can't do what she does best-teach-teach the child a better way, which is teaching. Also although the teachers may not always articulate it well, they instinctively know there's something a little off here, something that can't be wisely ignored. What teachers do is observe and modify behavior -- learning behavior, and what we think of as "behavior." They talk in terms of behavior: "He learned regrouping in math" is a behavior. "He blurts out three times a minute" is also a behavior. Often their irritation shows when they talk to a parent, for the tenth time, about the cowboy boots (he kept sneaking out in them) -- or when they have to pick up someone else's soiled tissues for the sake of the other children's help or risk embarassing the child who can't help where she is on that task. I know it's extremely hard for parents-it's their *child* who is being criticized-but I would like to encourage doctors to search for the hidden insights lurking behind the complaints and irritation. Sometimes it's very valuable information. SUBJECT: Re:Question for SusanS29 Date: 95-12-16 16:42:20 edt FROM: PeterCB55 Just a short note to add to the discussion. In my experience, "most" teachers, like "most" parents and "most" doctors or psychologists (for that matter), work hard, try to play by the rules, and practice within their area of competency. Every once in a while I gather information from teachers or others that is not reliable, contradictory or simply erroneous. However, this is not true when considering the large majority of situations that parents, teachers and mental health workers that I deal with. What is far more common though, is the negative impact of ignorance and inertia. That is, where a lack of information is taken as the "absence" of a problem. In the seond instance (e.g., inertia) perceptions that have become crystalized in the eyes of various beholders tend to remain crystalized and resistant to other considerations. For example, the assumption that "Johnny's" failure to do well in school reflects an "I don't care" attitude, a lack of motivation, immaturity, or a lack of adequate help from within the home, represent the kinds of assumptions that left unexamined can effectively delay identification of real learning problems for years. Better that minor difficulties be given appropriate attention than the alternative, that we optimistically hope that "they will catch up with time" and fail to look below the surface. From the point of view of one provider, I guess I'll take a "false positive" concern any day to a "false negative" concern. PeterCB55 SUBJECT: Re:Moved Messages Date: 95-12-26 22:24:58 edt FROM: Jeep62 I am new to AOL, but am a psychologist who recently wrote a book on ADD. I am an advocate of behavioral interventions both at the home and school in addition to the us use of medication. Unfortunatley many teachers feel that they should jump right in without tking data on the frequency, duration and the function of behaviors and as a result many programs fail. What has been your experience? SUBJECT: Re:Jeep62's message Date: 95-12-27 14:46:40 edt FROM: AP80 I'm a middle school Resource teacher (LD) and I agree wholeheartedly with your comment that few take the time to monitor and evaluate behaviors. Part of the problem is that everyone has to re-invent the wheel. If someone, such as yourself, were to provide forms that lend themselves to monitoring behaviors and sell them to districts, teachers would be more inclined to use them. I make forms all the time, but it's time-consuming and they don't always measure what I think I'm measuring. Also, districts need to understand that we need another person to watch the child's behavior while we are teaching. Right now I rely on friends in the building to come in for a 20 minute period and record behaviors but my friends are starting to hide from me. The principal thinks this can be done while I'm teaching and it's just not possible. When I do develop a technique that workds with an ADD/LD kid, other teachers are reluctant to use it ("too much time, I'm not a sp. ed. teacher, etc." Unless a district has been the target of a particularly costly lawsuit, they tend to bury their heads in the sand. SUBJECT: Re: Jeep62's message Date: 95-12-27 21:44:26 edt FROM: Ratatat Any reason why you don't use the Teacher's Conner Checklist? SUBJECT: Re:Moved Messages Date: 95-12-31 15:32:02 edt FROM: SusanS29 "Unfortunatley many teachers feel that they should jump right in without tking data on the frequency, duration and the function of behaviors and as a result many programs fail. What has been your experience?" My experience has been that many special educators really don't understand or use behavior modification well. Classroom teachers have not been trained in behavior modification, and asking them to collect data on frequency, duration and function of behaviors is like asking a graphic artist to perform as a CPA. SUBJECT: Behavior plans and Checklists Date: 96-01-01 23:26:24 edt FROM: Rayna As a School Psychologist, I'm very often involved in helping teachers deal with kids who are having a difficult time in class. For children with attention problems (as with all others), it is unrealistic to expect teachers to "keep data" for someone else to interpret. The key to a useful behavioral program is collaboration with the teacher to help him/her define the behaviors that the teacher would like to see the child decrease and what behaviors the teacher would like to see increase in their place. I will go into the classroom to observe, as will the school counselor, when we are trying to develop an understanding of a classroom problem. The key is coming up with a practical plan with the teacher and with the child. When a behavior plan is being implemented, the teacher is encouraged to discuss the problem with the student and see if the child can come up with some stragegies that he/she would find helpful. By the way, I work at the elementary level. As for checklists, the Connors is not the most statistically valid instrument. The Achenbach Child Behavior Checklist and Teacher Report Form as well as the Attention Deficit Disorder Evaluation Scales by McCarney have more validity. The ADDES has the advantage of having teachers rate the frequency of behavior in very concrete terms, i.e. "never, once a month, once a week, once a day, once an hour." Most teachers feel more comfortable with that determination than "never, rarely, sometimes, often." The Achenbach scales also look at a wider range of behavior problem syndromes, e.g., social problems, somatic complaints, anxious/depressed. Often, attention problems are associated with problems other than ADHD and getting a broader picture is important. SUBJECT: Re:ADD- potential case Date: 96-01-02 00:15:54 edt FROM: StCat37 My son is in second grade, has been in special ed since preschool because of severe speech articulation problems due to cleft palate. His teacher has just recently suggested that he may have ADD. I am just beginning to try to make sense of all this. I can't figure out why no one saw it sooner. We always thought that speech delays were his biggest problem. One thing that I have noticed is that he will not look anyone in the eye when speaking with them. In all the years of evaluations in special ed the psychologists always said that Richard's self-esteem was very high. He has problems with bowel control also, but not bedwetting. Are these related to ADD? I have had people tell me that I should get Richard on medication right away - why wait? And others who think that people just medicate their children so they can handle them more easily. It is all SO frustrating! Any help you can give would be greatly appreciated. I've written down the names of the books you mentioned and will be checking the library tomorrow! SUBJECT: Re:ADD- potential case Date: 96-01-03 22:50:30 edt FROM: SusanS29 "One thing that I have noticed is that he will not look anyone in the eye when speaking with them." He may find that he can concentrate better by looking away. I had a language impaired student who did that, thus avoiding any impatient looks on the teacher's face as he struggled to come up with his answer. "He has problems with bowel control also, but not bedwetting. Are these related to ADD? " Bowel control problems are very common although not many talk about it. Apparently the kids ignore the sensation that they have to "go." "I have had people tell me that I should get Richard on medication right away - why wait? And others who think that people just medicate their children so they can handle them more easily." I can't tell you whether you should put your child on medication "right away" because he's your child, but the fact is that if parents can "handle them" more easily afterwards it can have a dramatically positive effect on family life. That's not a copout-that's how life is *supposed* to be for children. SUBJECT: HELP!!!!! Date: 96-01-04 21:52:23 edt FROM: CINDYFELLA I AM A MOTHER OF A 14 YEAR OLD SON WITH ADHD AND I AM READY TO PULL OUT MY HAIR, IT IS ALREADY GRAY, AND I NEED ADVICE FROM PROFESSIONALS AND OTHER MOMS,DADS OR ANYONE WHO CAN HELP! HE IS FLUNKING 8TH GRADE AND DOESN'T CAARE, VERY HIGH IQ, AND IN TROUBLE AT SCHOOL, AND NUMEROUS OTHER PROBLEMS, SOMEBODY PLEASE HELP, I AM AT THE END OF MY ROPE. SUBJECT: Re:ADD- potential case Date: 96-01-04 23:04:17 edt FROM: StCat37 Thanks, Susan. I have found your message board extremely helpful and informative. It helps a lot to have input from a variety of people who deal with ADD. It's good to know we're not alone. SUBJECT: Adults with ADD Date: 96-01-08 20:27:59 edt FROM: LEIGH98549 I am a 22 year old college student about to get my degree in elementary ed. this May. While looking for a book on learning disabilities a while ago I happened to pick up a book on ADD and saw myself written all across the pages. I talked to my closest and longest friends about this and they were able to point out many things that I do that are related to ADD. I feel very relieved that I know what's going on with myself. It has helped me to get a better focus on my life and to understand things in greater detail. My only problem is that now I'm not sure what to do next. I would like to talk to other adults who have ADD about what they have done or are doing. Did you try medication or support groups? This is a fairly new discovery on my part and so I haven't seen a doctor or anyone else yet. Anyone who would like to talk about this through e-mail is welcome to. Maybe we can even get some of us online to talk about it together at once! Leigh SUBJECT: Re:Adults with ADD Date: 96-01-09 08:25:54 edt FROM: Ratatat << My only problem is that now I'm not sure what to do next. I would like to talk to other adults who have ADD about what they have done or are doing. Did you try medication or support groups? This is a fairly new discovery on my part and so I haven't seen a doctor or anyone else yet. Anyone who would like to talk about this through e-mail is welcome to. Maybe we can even get some of us online to talk about it together at once!>> What to do next? Well, I would suggest reading some more. Have you read Driven to Distraction by Hallowell and Ratey, or their second book, Answers to Distraction? Both are excellent, and will help you continue to get a clearer view on what ADD is. One of the main questions that you need to resolve is how much of a problem have the ADD symptoms caused for you? Identify those areas, and try to develop strategies for coping better with them. Adults are diagnosed with ADD and do take medications. It is very important to find a doctor who knows and understands Adult ADD, however. The very fact that ADD doesn't end in childhood is a foreign concept to some doctors of the "old" school. So ask around. There is an ADD support group that is primarily frequented by adults right here on AOL, and with many live chats. You can find it through keyword PEN. Give it a try. Also, check out the library right here in Special Education. SUBJECT: Re:Behavior plans and Checkl Date: 96-01-12 03:49:05 edt FROM: Wats new Rayna, Where can one obtain a copy of this ADDES checklist? SUBJECT: Re:Behavior plans and Checkl Date: 96-01-13 12:20:28 edt FROM: SusanS29 Wats new, the ADDES checklist is published by Hawthorne Publications in Columbia, MO. I don't have the phone number handy but they do have an 800 number for ordering, and their area code is 314. In fact their area code may have changed last weekend, but I called them yesterday using 314 and got through. I think the ADDES checklist is far superior to its competitors. In additition to making it easy for the teacher to decide how often he or she uses the behavior, the checklist has eliminated negative language. In other words, the items don't describe the child's behavior as "lazy." We don't know if the child is lazy or isn't working for some other reason. SUBJECT: Hypoactivity Date: 96-01-13 12:30:34 edt FROM: Ratatat Moved from another folder: SUBJECT: Hypoactivity Date: 96-01-06 22:48:32 EST FROM: Boulevard ..I work with a girl who was diagosted ADD primarily inattentive (ADD without the hyperactivity) last year. Medication has made a big difference for her. Classroom modifications, language therapy and tutoring were helpful, but not sufficient. Now, with everything working together, she's a different kid! She shows enthusiasm, confidence, and has a neat personality (some one had described her as going from beige paint to wallpaper). - Nancy, speech path. SUBJECT: Re: Hypoactivity Date: 96-01-13 12:32:55 edt FROM: Ratatat Message moved from another folder: SUBJECT: Re:Hypoactivity Date: 96-01-08 11:16:40 EST FROM: DBethoney What medication was your student placed on? Are there good references for parents and school staff to read to learn more about these children who struggle from being called lazy, uncaring etc.? Thanks, Dan B. SUBJECT: Young Kid with possible ADD Date: 96-01-13 12:35:32 edt FROM: Ratatat Moved from another folder: SUBJECT: Young kid with possible ADD Date: 96-01-08 20:24:04 EST FROM: MDicker834 Does anybody have any suggestions on how to work with a four year old male student that is on about a two year old level? His attention span is very short, and is very hyperactive. I have been hired to work one on one with him. Thanks for any suggestion. SUBJECT: Re: Hypoactivity Date: 96-01-13 12:36:04 edt FROM: Ratatat Moved from another folder: SUBJECT: Re:Hypoactivity Date: 96-01-08 22:31:21 EST FROM: Boulevard I'm not sure - I'll check. You might also consider ruling out a seizure disorder - some kids who have very slight seizure activity appear to be daydreaming, too. Interestingly, in my student's case, she was diagnosed with a learning disability last year. Her brother, who was diagnosed as LD 3 years ago, has just recently been diagnosed ADD with hyperactivity! SUBJECT: Re: Hyperactivity Date: 96-01-13 12:37:47 edt FROM: Ratatat SUBJECT: Re:Hyperactivity Date: 96-01-09 16:33:23 EST FROM: Cathq Dan- Check out Keyword "PEN". There are message boards, chat rooms and a library on ADHD, medications, and a whole list of other topics. Also, try Keyword "IMH". Same type of ADHD info. Hope this helps. If I can give you anymore info, please feel free to Email me anytime. Cath SUBJECT: Re: Hypoactivity Date: 96-01-13 12:39:47 edt FROM: Ratatat Moved from another folder: SUBJECT: Re:Hypoactivity Date: 96-01-09 19:31:27 EST FROM: AudraMSS Dan B. I posted the question about hypoactivity because my second grader is the most lethargic student I have ever worked with. I am requesting tomorrow that my CSE refer this boy for a complete medical/physical work-up to check any possible thyroid or endocrine problems. Any information I learn regarding hypoactivity , medications etc. I will share with you. SUBJECT: Hypoactive teenager Date: 96-01-13 12:41:12 edt FROM: Ratatat Moved from another folder: SUBJECT: Hypoactive teenager Date: 96-01-11 19:08:22 EST FROM: CherylN102 My daughter was in special ed. preschool at 4 for auditory processing problems. She had a very low energy level, allergies and ear aches. The physician said her lethargy was just the way she was (meaning she was not anemic I quess). She was discharged from special ed. but continued to have trouble with inefficiency, lethargy and distractibility although she was a good reader. Her language processing went back and forth from mediocre to poor. I had her stop drinking milk since I knew it affected me. At 15 1/2 years she was struggling with her homework load, depressed and fatigued. She was finally diagnosed as ADD with a learning disability. The effect of the first 5 mg pill of Ritalin was amazing. She could understand conversations in a crowded room. She can do school work in a classroom without the draining distractions bothering her, her mood picked up and she took up aerobic exercise. She was just overwhelmed from her inefficient nervous system all those years. She also went from an A/B student to nearly all A's. She will never be a top student, but she can cope now. SUBJECT: Re:Behavior plans and Checkl Date: 96-01-14 16:17:43 edt FROM: Rayna ADDES Checklist, Home and School Versions, are published by Hawthorne Press. Sorry I don't have the phone # at home. SUBJECT: Re:Behavior plans and Checkl Date: 96-01-15 00:40:06 edt FROM: SusanS29 Hawthorne is located in Columbia, MO. Again I don't have the phone number, but I know the area code is 314. SUBJECT: Biblical approach to ADD Date: 96-01-16 14:43:08 edt FROM: SPIFSTER69 I am looking for any information or reading material on the biblical approach to ADD. Please E-Mail me if you have any information. SUBJECT: medication in the classroom Date: 96-01-17 16:34:23 edt FROM: JULES SQ We are doing a report on children who need to be on medication(i.e. child with ADD) and the medicines effect on the child while in the classroom. If you have any info. on this topic please e-mail: JULESSQ.@aol.com SUBJECT: Re: Behavior plans and Checkl Date: 96-01-18 10:09:57 edt FROM: Ratatat << Hawthorne is located in Columbia, MO. Again I don't have the phone number, but I know the area code is 314.>> The phone number is: 1-800-542-1673 SUBJECT: Re:medication in the classro Date: 96-01-18 10:12:10 edt FROM: Ratatat <> Could you explain who "we" are? And what are your goals in this research? Do you have specific concern you need to address? Check the library here in Special Education forum for some good files on ADD and lists of books. In particular, look for books by Russell Barkley and George DuPaul. They have done the most "hard," objective research ADD in the classroom (with and without meds). SUBJECT: Re:medication in the classro Date: 96-01-18 22:19:22 edt FROM: SusanS29 I would be glad to tell what I have seen in regard to meds and classroom... ALL of it positive. SUBJECT: Re:ADD diet/nutrition to Ali Date: 96-02-02 10:20:28 edt FROM: Barberas4 boy, I'm sitting here and the tears are just streaming, reading all these messages from others dealing with struggling children like mine...he's 10, yesterday I met with his teacher, his aide, and his Sp.Ed. and handed them Halloway's book....how can professionals work with these youngsters all year and never read up on what's happening to them?????????????????????????????????????your letter sounded just like us. Thanks for making us feel like we';re not the only ones. SUBJECT: Re:ADD & LDhi - Date: 96-02-02 10:33:05 edt FROM: Barberas4 hi - re: bedwetting....my son was a bdwetter until 8...we tried taking him off all dairy products and it worked a charm (or did he just grow out of it!!!!!?????) ...a little spot of hope? good luck SUBJECT: Re:ADD to sherri 1128 Date: 96-02-02 10:42:26 edt FROM: Barberas4 my 10 yr old was diagnosed last year - after much pushing and prodding form me. his CORE team felt it was some kind of learning disability but no clear evidence showed up in the tests. I had to do my own reading and research to ask for help with diagnosing ADD. I've read 4 books, the last one was the most comprehensive - Driven to Distraction by Dr. Edward Hallowell. It has checklists, tests to ask for, strategies for home and school, ADD adult help, and medication info. you are yyour child's best and ONLY advocate. FIGHT. SUBJECT: re; add meds/chlonodine Date: 96-02-03 16:54:57 edt FROM: RobynSD would like inof on chlonodine as a possible treatment for our 4 year old with ADD. We tried ritalin for a month, but I felt like he was too irratible. dr. said this is common he'll get used too it. I could not imagaine such a good natured kid turning so unhappy. Nor could I stomach the rebound from ritalin, also, I felt he was more focused, but too intense. Like his motor was revved too high-he's not officially hyper. Any one try chlonodine? It is being recommended to us and I will not just jump on it til I know more. How does cylert differ from ritalin in reported side effects? SUBJECT: Re:re; add meds/chlonodine Date: 96-02-03 18:35:50 edt FROM: SusanS29 Ritalin often doesn't work well in very young children, even when it will work later on. Usually the next thing tried in such young children is dexedrine, which seems to be much smoother for young children. Susan SUBJECT: Re:re; add meds/chlonodine Date: 96-02-04 01:17:54 edt FROM: Oynk oynk Have had 2 students (one 5, one 11) on Clonodine. Might have been a coincidence, but both got very depressed. I have also seen good results for young kids on dexidrine. SUBJECT: ADD with Hyperfocus Date: 96-02-04 06:48:54 edt FROM: MBGANZ Has anyone ever heard of this? What is it? How does it differ from ADDHD? Thanks in advance for info. SUBJECT: Re:re; add meds/chlonodine Date: 96-02-04 09:57:24 edt FROM: PeterCB55 With children this young (e.g., 3-4-5 years old), you want to make sure that you have clear symptom targets in mind. That is, specific symptoms noted by you and others on a daily basis that you can track in terms of intended or hoped for effects with medications. The reason for mentioning this is that Clonidine tends to be targeted at symptoms involving motoric overactivity, hyperarousal, low frustration tolerance (important if temper outbursts are an issue), and impulsive/disruptive behaviors. According to some, it is not felt to be as effective for children whose primary symptoms involve inattention, concentration and the cognitive aspects of inattention. Clonidine tends to have sedating effects, which in some children is very helpful, and in others elicits unwanted drowsyness and sedation (the most common side effect). In any event ask your physician to carefully explain the hoped for costs and benefits of each drug, and take time to make sure you understand which symptoms you are trying to treat so that the medication selected for a trial reflects an effort to treat those symptoms felt to be most disruptive to your child. An added benefit from this type of conversation is that your observations regarding effects and side-effects can be more precise and informed. Good Luck PeterCB55 SUBJECT: Re:ADD with Hyperfocus Date: 96-02-04 12:33:50 edt FROM: SusanS29 "Has anyone ever heard of this? What is it? How does it differ from ADDHD? Thanks in advance for info." Hyperfocus is a trait some people with ADD sometimes have. At its best, the person learns to control it, and can "hyperfocus" on a task, getting a lot done. Sometimes I can sort of "make it happen" in me. It's sustained, intense focus (although still not perfect). The person may not notice he's hungry, or uncomfortable... or that he's been working for six hours or more. I'm a writer, and sometimes I can trigger it when I'm writing and get a lot done. At its worst, it causes the person to focus on inconsequential or unimportant tasks while something very important gets left undone. SUBJECT: list of add/adhd meds Date: 96-02-07 16:55:46 edt FROM: SCooper407 Hi, Trying to help a friend with her son. Need help with an up dated list of meds used for add. Has been on retalin for 3 years. He is 12 years old and not gaining weight. Doctor suggested anti-depresants (prozac) Had any one heard of adding elvil with the retalin to reduce the amount of retalin doses. Any help would be great. Please e-mail SCooper407 SUBJECT: Re:list of add/adhd meds Date: 96-02-07 20:50:25 edt FROM: COOKIEM2U We went through 3 years of no weight gain (actually he lost weight during the school year) until this year. We went to time released ritalin and it has worked wonders......he is actually gaining weight......but still won't eat breakfast. Good luck. SUBJECT: LSKDOD- Date: 96-02-20 15:01:08 edt FROM: Bm31267 Interested in other social problems related (or no) to ADHD. Ritalin, Cylert & Clonodine not the answer. Concentration not a problem when not on medication, but has no regard for authority, is highly inpulsive, is eight yrs.old, but can't be trusted not to get into things. Any suggestions as to where to go next.? SUBJECT: Re:LSKDOD- Date: 96-02-20 17:46:40 edt FROM: Ratatat <> Check out Mary Fowler's MAYBE YOU KNOW MY KID. This is her story of learning about and working with her child (she is one of the founder's of CHADD). She provides some clear cut steps one can follow to help modify behaviors and activities that are distruptive. Also, call Hawthorne Educational Services and ask for a copy of their catalog. 1-800-542-1673. They have a number of Guides with concrete easy to follow steps that adults can take to address specific behaviors. You might want to take a hard look at the Parents Guide which deals with non-academic home behaviors. SUBJECT: Social Skills video Date: 96-02-25 23:48:58 edt FROM: OutThink I viewed the new video by Rick Lavoie (he did the FAT City Workshop: How Difficult Can this be"). The new video is titled "Last One Picked, First One Picked On". It was very enlightening for me. LAvoie approached the problems of social skills etc and their relation to a child's LD and/or communication skills. I bought a copy of the video and it has made the rounds of the Middle School and High School support staff. I am not the only one who found the tape valuable. The principal of one school wants to use it for an in-service day. The support staff at the middle school is suggesting the same for their teachers. If you can borrow it from a local support or advocacy group (or if you can afford to buy it) I really recommend it. SUBJECT: ADHD MEDS Date: 96-02-26 11:30:28 edt FROM: Go Dau ha I have a child with ADHD he has been on meds for four years. He is 7 years old. He was in the hospital for this for a year at the age of four. He is currently taking ratalin four times a day. Depatkote once and Clondine three times a day. He is in theapy twice a month. They want to drop the clondine and start Immpermine. I guess my question is am I ever going to find a something that will work for him. The worst time right now is in the morning. I have done everything I can think of to help my son but I'm running out of resources for him. I'm losing alot of time from work. The day care has had enough. He was in the regular Classroom for a year but in Janurary we had to put him in a self contained classroom. He still is having a hard time. I have another son 5 years old that is getting tired of being beat up. I'm tired of my house being crazy. I'm looking for anything that will help. I've tired everything possible through couseling. Please help if you can. thanks SUBJECT: Re:ADHD MEDS Date: 96-02-27 10:19:40 edt FROM: Ratatat Have your read "Maybe You Know My Kid?" by Mary Fowler? This is the story by one of the people who founded CHADD and her struggles with her son, which sound very similar to what you are going through - behavior wise. Her book is full of wisdom and practical strategies you can use. Also, I recommend 1-2-3 Magic by Thomas Phelan. It is available in book or video form. It is a good, easy to use, immediately workable system for discipline. SUBJECT: Meds and handwriting Date: 96-02-29 19:57:38 edt FROM: KTJ OTR Parents, Have you noticed any change in your child's handwriting as a result of the use of meds for ADHD? If so, could you please let me know about it. I'm interested in hearing about your experiences. SUBJECT: Re:Meds and handwriting Date: 96-03-01 01:39:04 edt FROM: SusanS29 Sometimes the meds improve handwriting and sometimes it doesn't. Some people can tell when their meds wear off by the deterioration of their handwriting. SUBJECT: Another Opinion Date: 96-03-03 09:17:29 edt FROM: VTLVdocs I just signed on to AOL this morning and have been reading all of the notes, comments and information on this line. I believe that this forum is not funded by C.H.A.D.D., Ciba-Geigy, or any other institution but found it somewhat alarming to find the majority of the information centered around C.H.A.D.D. or ritalin. C.H.A.D.D. is a very worthwhile organization with many resources and strengths, but it also is one with a primarily medically oriented background. This direction leads to only one method of management, pharmaceuticals. Anyone in C.H.A.D.D. or otherwise educated in the field understands that with medication the "Syndrome" of A.D.D. with or without hyperactivity is not "TREATED" with medication but simply suppressed until the medication is stopped. Most of the improvement that occurs over time is due to maturity, structure or avoidance. There are other modes of managemet, too many to list here, but should be offered to the often confused parents and individuals of A.D.D. I hope that I didn't offend anyone. SUBJECT: Re: Another Opinion Date: 96-03-03 16:33:43 edt FROM: SusanS29 " I believe that this forum is not funded by C.H.A.D.D., Ciba-Geigy, or any other institution but found it somewhat alarming to find the majority of the information centered around C.H.A.D.D. or ritalin." People talk about what they choose to, and often a lot of questions swirl around Ritalin. "C.H.A.D.D. is a very worthwhile organization with many resources and strengths, but it also is one with a primarily medically oriented background." THIS SIMPLY ISN'T TRUE. I have been to two national conferences (international, actually). I have the conference Proceedings right here on my bookshelf. Because of repeated accusations like this, I sat down one day and categorized all the sessions as to whether they dealt with medical intervention or other interventions. NINETY-FIVE per cent of the sessions dealt with non-medical interventions such as educational support, parent training, cognitive therapy, etc. 95%. " Anyone in C.H.A.D.D. or otherwise educated in the field understands that with medication the "Syndrome" of A.D.D. with or without hyperactivity is not "TREATED" with medication but simply suppressed until the medication is stopped." Again, that isn't accurate. The medications do *NOT* suppress symptoms. They get to the cause of the symptoms-inadequate levels of neurotransmitters. Then they cause the brain cells to either release more neurotransmitters or to recycle what is already present. While the effects of the medication are present the person is more able to learn, benefit from therapy, etc. The research results are quite clear on this point: all the known interventions work better when combined with effective and sensible use of medication. "Most of the improvement that occurs over time is due to maturity, structure or avoidance." This also is not true. The research also shows that the people most likely to have a hard time as young adults (i.e., drug or alcohol abuse, brushes with the law, etc.) are those whose ADD went untreated. " There are other modes of managemet, too many to list here, but should be offered to the often confused parents and individuals of A.D.D." I absolutely agree with you. Relying solely on medication is a poor plan. BUT -- the best solution is for parents and adults with ADD to get themselves to a good support group. CHADD runs them, but also many large hospitals have them. You haven't "offended" anyone, but I hope you understand that it's an open forum, and people are entitled to disagree with you. SUBJECT: OFFICIAL ANNOUNCEMENT Date: 96-03-03 16:48:45 edt FROM: SusanS29 Just so there is no misunderstanding: Neither CHADD nor Ciba-Geigy has any official connection with AOL or with this Forum. There is no policy of bias toward or against any organization or company. This is a wholly free and open forum, which means that although anyone can state his or her view, anyone else is free to argue against that person's view. That includes me, the host, but my views do not carry any more weight than any other person's and do not reflect any "official policy" of any kind. The only rules for this forum are those established by AOL, and those rules can be reviewed at any time by using keyword: TOS. SusanS29, Host SUBJECT: Re:OFFICIAL ANNOUNCEMENT Date: 96-03-03 21:13:00 edt FROM: VTLVdocs Thank you SUBJECT: Re:Another Opinion Date: 96-03-03 22:44:41 edt FROM: Ratatat << C.H.A.D.D. is a very worthwhile organization with many resources and strengths, but it also is one with a primarily medically oriented background. >> Actually, their information and publications are but are research based, because - after all - ADD is a neurological disorder. A great many of their publications deal with the emotional, psychological, educational and environmental impacts and adjustments of ADD. SUBJECT: Re:Another Opinion Date: 96-03-03 22:46:50 edt FROM: Ratatat <> Yes, Ritalin (which I take) is very fast acting, and when it leaves my system my symptoms do become more pronounced. But, while on the medication both I, and my children, are better able to think through and learn new coping skills and organizational methods. I wouldn't say my symptoms are "suppressed" but rather that, for a while, my brain chemicals are balancing. SUBJECT: Re:Another Opinion Date: 96-03-03 22:49:34 edt FROM: Ratatat <> There are now some very good pictures (MRIs) of ADD brains that show there is a real physical difference in the size of the right frontal lobe. Improvement occurs *if* people with ADD have been are simply bright and tough enough to live through to adulthood AND lucky enough to find a nitch that matches their style. Others (most) improve when there has been appropriate supports provided at home, at school and with their doctors. Otherwise, the only improvement is in feeler, dumber, lazier and crazier. SUBJECT: Re:OFFICIAL ANNOUNCEMENT Date: 96-03-04 19:59:27 edt FROM: SusanS29 "Thank you." You're most welcome... but brace yourself, because the great majority of people who deal with ADD are enthusiastic about CHADD and what it does. Going after CHADD in this forum might be like going into a retirement center and complaining that those over sixty sap too many of society's resources... :) SUBJECT: ADHD/ADD HELP NEEDED Date: 96-03-04 21:56:05 edt FROM: RVeley I live in WV and have my 3 nephews and 1 neice who are in my care 95% of the time. I have raised 2 kids with ADHD. Times have changed much since then. These kids take a boatload of medicines. With my one nephew nothing seems to help. I have begged the school system for an evaluation for each of them, oh but what a waste of time. He cannot sit still for a minute in class and disrupts everyone in the class. I would like it if anyone has any suggestions for school and or home. Thanks. RVeley SUBJECT: Re:OFFICIAL ANNOUNCEMENT Date: 96-03-04 21:56:35 edt FROM: VTLVdocs There was no attack on C.H.A.D.D. as an organization, I believe that all educational and advocacy programs should flourish for the childrens sake. I have not had the same experiences at C.H.A.D.D. meetings as Susan and Ratatat, the presenters in my local area have all but slandered any form of behavior modification, biofeedback, diet, etc., non-pharmaceutical approch considered. I still am a supporter of medication when medication is dictated, but as the presentations supported medication for all, I cannot support this philosphy. Often while overlooking other potential causes to the attentional dysfunction, the children of my area, as I cannot speak for other regions, are medicated and at alarming dosages. One local school district has approximately 14% of its elementary population on Ritalin, far above the national levels and this is stemmed by some C.H.A.D.D. parents involvement with the PTA and the local pediatricians. To make matters worse many of the children are at 50 to 60 mg per day. Now I know that IS NOT C.H.A.D.D.'s fault, but rather is the pediatricians, and I am trying to enlighten them. By the way, I also have been diagnosed with A.D.D. SUBJECT: Re: OFFICIAL ANNOUNCEMENT Date: 96-03-05 08:29:13 edt FROM: RRnFL <> With all due respect Susan, isn't it possible that the chadd supporters are simply more vocal? Perhaps those dealing with attending to a kid's differences in other ways are just too busy or tired to give testimonials? Francine SUBJECT: Re:OFFICIAL ANNOUNCEMENT Date: 96-03-06 03:03:18 edt FROM: Socadream I think VTLVdocs is saying that too many people (in his/her area) feel that meds is the only way to treat ADD. One must not judge a whole organization by one chapter. I am VERY involved in our local chapter and we have different speakers all year long, a lending library, various articles and have started a quarterly support meeting (with about 7 groups, 10 people to 1 prof. facilitator). Including a group for adolescents and one for adult ADDers only. We believe that each person is an individual and thus needs an individual life plan, which may or maynot include medication, counceling, therapy etc.. We try to provide resources for our members to educate THEMSELVES regarding ADD issues, their choices are their choices. I have an ADD Grandmother, father, VERY ADHD brother, 16 yr old son, husband and father-in law. We have dealt with Alcohol, drug and physical abuse,gangs (motorcyle ones in the 40's), joblessness, divorces etc..(7 years seems to be the average an un-ADD spouse could last with an undiagnosed ADDer). But we are all dealing with individuals and what is best for each. Some are on meds, some are not. Everyone has turned out successful (with struggles), bright, happy and at peace with themselves and family (at least for now). At times it was rough (spanning 60-odd years), as some have LD's too and dealt with Special Ed in the 60's (before PL-142). Please don't judge the whole by the few. Do what is best for your situation and keep an open mind (ADDer's are such inventive and creative thinkers! Bless em'!!!!) SUBJECT: Re:OFFICIAL ANNOUNCEMENT Date: 96-03-06 23:11:54 edt FROM: SusanS29 "With all due respect Susan, isn't it possible that the chadd supporters are simply more vocal? Perhaps those dealing with attending to a kid's differences in other ways are just too busy or tired to give testimonials?" Seems unlikely to me that there would be some selection here where people who have had good experiences with CHADD have the energy to post, but those who aren't involved with CHADD mysteriously don't. :) But I'm not sure what you mean by dealing with it in "other ways..." as I say I'm not an active member of CHADD but when I go to the national conventions I'm really struck by the tremendous variety of approaches demonstrated and explained there. I always come back with new ideas and methods. SUBJECT: CHADD good & bad Date: 96-03-07 11:12:52 edt FROM: SusanS29 "There was no attack on C.H.A.D.D. as an organization..." Not here in this folder but CHADD has been widely attacked lately. What happened here was misrepresentation of CHADD's philosophy. That's not a crime but it deserves to be answered. "I have not had the same experiences at C.H.A.D.D. meetings as Susan and Ratatat, the presenters in my local area have all but slandered any form of behavior modification, biofeedback, diet, etc., non-pharmaceutical approch considered." That's kind of weird *to some extent.* I'm an expert in behavior modification and I will freely say that it has tremendous limitations. That's not slander; it's the truth. As Ratatat quite-correctly pointed out, Ch.A.D.D. chooses what interventions it supports based on well-done and replicated research. This is an extremely high standard and not everyone will agree with it, but as an organization they are entitled to do that. Since I have a research background I naturally agree with them. Neither dietary interventions or biofeedback (to cite two examples you mentioned specifically) have yet met that standard. However, Ch.A.D.D. provides valuable information on behavior modification, cognitive therapy, educational support and a host of over proven interventions. CHADD can't be all things to all people, and it doesn't pretend to be that. People who want to look at less-well documented approaches will need to go elsewhere. "... as the presentations supported medication for all, I cannot support this philosphy." I think *all* people with solidly-diagnosed ADD should have a trial of medication, because the benefits are so remarkable and wide-ranging- affecting all aspects of life. "Often while overlooking other potential causes to the attentional dysfunction..." At most smaller conferences on ADD this part of it won't be discussed in depth. The assumption is that a responsible diagnosis was made. However, at the national conferences, where the number of attendees guarantees attendance for such a discussion, the issue of differential diagnosis is covered. I can send you a list of the conference topics from last year's national convention if it will help. "One local school district has approximately 14% of its elementary population on Ritalin..." If you will e-mail me the name of the school district and its address I will gladly contact them. I might be able to do some things to influence them to a more realistic stance. "To make matters worse many of the children are at 50 to 60 mg per day." Again you'd have to look at the kids, etc. It might not be too much, for instance the sustained release sounds like more medication than it is. Send me the name of someone in the district so I can confirm it and I'd be more than willing to talk to them. SUBJECT: Re: CHADD good and bad Date: 96-03-07 11:13:59 edt FROM: SusanS29 "With all due respect Susan, isn't it possible that the chadd supporters are simply more vocal? Perhaps those dealing with attending to a kid's differences in other ways are just too busy or tired to give testimonials?" Seems unlikely to me that there would be some selection here where people who have had good experiences with CHADD have the energy to post, but those who aren't involved with CHADD mysteriously don't. :) But I'm not sure what you mean by dealing with it in "other ways..." as I say I'm not an active member of CHADD but when I go to the national conventions I'm really struck by the tremendous variety of approaches demonstrated and explained there. I always come back with new ideas and methods. SUBJECT: Re:ADHD/ADD HELP NEEDED Date: 96-03-07 13:25:08 edt FROM: Ratatat << With my one nephew nothing seems to help. I have begged the school system for an evaluation for each of them, oh but what a waste of time. He cannot sit still for a minute in class and disrupts everyone in the class. I would like it if anyone has any suggestions for school and or home. Thanks. RVeley>> Have you requested the evaluation in writing, stating and giving specific examples of your concerns, and requesting a response in writing from them as to their rationale? If not, I suggest you do. If there is sound reasoning for an evaluation they must provide it. Also, try contacting the Protection and Advoacy Agency in your state. You can get the location and phone number from their national office: 202-408-9514 SUBJECT: Re:OFFICIAL ANNOUNCEMENT Date: 96-03-07 13:29:02 edt FROM: Ratatat <> It could be that people with children with attentiond deficit disorders who are involved in CHADD are simply better educated! I actually take offense at the suggestion that because I am I have time to contribute my opinions on this board it is at the expense of meeting my children's needs! And yes, I am tired - POOPED! But, I feel I have an obligation to help other parents who are on the front side of the ADD learning curve. People where there for me to give me a boost and a shoulder, and providing support in return it the very least that I can do to return the favor! SUBJECT: Re:CHADD good & bad Date: 96-03-08 22:31:34 edt FROM: VTLVdocs Well you guys win, I now understand why there is little non-supportive information about CHADD, because you can't let it go uncommented on. Responses are appropriate and needed in a forum like this, but on and on and on...... By the way, Susan, I am confused by your comments about behavior modification, they seem to contradict your comments in the Behavior Modification forum on February first. I will leave this forum as my postings seem to be inappropriate, to the people who have forwarded mail to me directly, thank you, to those I have offended, I apologize. SUBJECT: SusanS29 Date: 96-03-09 20:07:06 edt FROM: JdjtPOWERS where do I find TOS SUBJECT: ? Date: 96-03-09 23:33:28 edt FROM: Ratatat Click on the GO TO menu at the top of your screen, then click on Keyword and type in TOS. SUBJECT: ADD/ADHD Article Date: 96-03-10 13:30:59 edt FROM: ADoman4780 If your child is struggling with ADD/ADHD we have an article available for you on our website that you may find encouraging and helpful. Tha National Academy for Child Development Home Page. http://www.nacd.org SUBJECT: Re:ADD/ADHD Article Date: 96-03-11 13:28:55 edt FROM: ADDisREAL I have just checked out the home page of the NACD, read through their articles are am struck by a few things. Most of the articles are "ancient" history dating from the 80's and do not take into account any of the recent information that has been made available about how the brain of people with ADD works. The newest document dates from 1990 and is a document by the founder which, in my opinion, is a justification for NACD's theory in the areas where it collides with current knowledge and practice. And, there are some serious mis-representations present of what is known today about ADD and how it is treated. This is a condition that has been studied and researched since before 1937 when stimulant medication was used for the first time. There exists a body of EMPIRICAL data that shows the brain of people with ADD is physically different than people without ADD. Additionally, there is data that shows that the brain of people with ADD use glucose (the "fuel" of the brain) differently with than people without ADD. There exists as well a huge body of working knowledge multi-modal treatment plans, about what works best for children with ADD and what just DELAYS appropriate treatment in the name of "trying this first." This NACD program sounds like one of the ones that delays appropriate treatment. There is also a claim that the symptoms of ADD can be "eliminated" by using the *program* developed by the NACD! Eliminated? Wow! When talking about medication is says, " These drugs are prescribed to affect the chemical make up of the brain (more specifically, they raise dopamine levels). The objective is to reduce impulsivity of the children. An alternative to medication is to take a look at what is causing the impulsivity, and then eliminate it. Many times food sensitivities are found to be an issue." First of all, the statement that these drugs raise dopamine levels is not quite accurate. These medications actually allow the brain to manage their own dopamine levels efficiently. These medications act as a sort of a "gate keeper" allowing the brain to manufacture, store and manage the flow of it's own neurotransmitters. There is plenty of clear evidence that the impulsivity that comes with ADD is caused by a chemical imbalance. So, we know the cause. Ditto distractability and hyperactivity. The idea that a child with ADD could really have their issues addressed by altering the diet is nonsense. Yes, some children with ADD also have some food intolerances, but so do children who do not have ADD. Food sensitivities DO NOT cause ADD. If a child's symptoms disappear or drastically improve with the use of diet, then there is a slim to small chance that a diagnosis of ADD was correct to begin with. The entire page is full of rational sounding, scientific sounding information that is just a little skewed - not enough to sound glaringly wrong to the average reader, but enough for an informed reader to know that the information is "not quite right." Basically, in my opinion, it is a advertisement for the NACD program which based on the theory that these learning problems are based on something NACD called "Neurological Dysorganization," and can be treated, nay, eliminated by one having one's child' brain efficiency evaluated on a "triannual basis" at one of the branches, upon which they design a program of appropriate brain stimulation for the child, which then requires the parents to receive training in order for it to be implemented. Anyone with a child with ADD, or any other disability can attest, it takes hard work and turbo-charged, thoughtful skills to raise and advocate for their child. But to suggest that "altering" one's parenting or home environment will address and eliminate the core issues of the child's disability is unfair. more............ SUBJECT: Re:ADD/ADHD Article Date: 96-03-11 13:29:40 edt FROM: ADDisREAL ....more In addition, it discounts the BIOneurological components of disabilities and flat out suggests that medication is unnecessary, and says that these disabilities are just "labels" and not representative of the *cause* of a disability. This bears no reflection to fact. Oh, there is a "disclaimer." It says, " Neither Robert J. Doran, Jr. Nor associates are licensed to practice medicine ... IF medical or other licensed professional advise is needed, please consult and licensed physician or other licensed professional," yet suggests that medication is unnecessary. Isn't that giving medical advise? In other places in the documents it talks about helping children with brain injury, minimal brain dysfunction, distractability, giftedness, Oh, and the NACD claims that its program has significantly improved the neurological efficiency of children who have "been labeled as having: Learning Disabilities, Dyslexia, ADD, Hyperactivity, Down Syndrome, Autism, Cerebral Palsy, Mental Retardation or similar labels." Quite an amazing document, all in all. One that I would avoid if looking for accurate, factual information that would best help my child. SUBJECT: Dr. Hallowell/ADD Conference Date: 96-03-12 23:31:51 edt FROM: JLUS Dr. Edward Hallowell, author of Driven to Distraction and Answers to Distraction, will be sole speaker at ADD/LD conference in Michigan April 27. For information, email me... JLUS SUBJECT: ADHD MEDS Date: 96-03-13 18:37:37 edt FROM: Go Dau ha I HAVE READ THE BOOK AND HAVE THE VIDEO MAGIC ONE TWO THREE. I HAVE A LOTS OF BOOKS AND HAVE DO EVERYTHING THAT I CAN. I DO BEHAVIOR MODIFICATION AT HOME AND SCHOOL. NOW MY SON HAS BEGONE TO HURT HIMSELF. HELP PLEASE SUBJECT: Re: ADHD MEDS Date: 96-03-14 22:05:48 edt FROM: Ratatat << NOW MY SON HAS BEGONE TO HURT HIMSELF. HELP PLEASE>> If you can be more specific about what the problem is, I am sure that somebody here will have an idea or some advise. Oh, and please don't post in all CAPS. It makes the messages much harder to read. SUBJECT: ADD/ADHD Date: 96-03-18 22:55:55 edt FROM: WKirkby I have benn working with children in my masters program that I am currently finishing and I feel that I might or yes I definatly have this problem> what can I as an adult do to cope with it? SUBJECT: Re:ADD/ADHD Date: 96-03-19 01:31:55 edt FROM: Cathq I think the first thing you probably need to do is get a reliable diagnosis. Find a knowledgeable psychologist/psychiatrist/neurologist who can help you. They keyword is Knowledgeable, in diagnosing Adults. Check out a Chadd group in your area, other ADD Adults, could probably give you info. SUBJECT: Re:daignosis of add? Date: 96-03-23 14:05:55 edt FROM: EBaez33486 My daughter will be nine in April. She is currently getting good grades in school. Her teacher at school says she is not a problem child in fact she is on the shy side.. But when she feels comfortable with you she can talk a great deal. She felt that my daughter might be alittle too much of a perfectionist. The teacher was concerned that she might be spending a little to much time on her work in class and needs to time her self so she complete it faster. She feels that this may cause her to bring to much work home. It seems to me that my daughters problems beging at home. She can't sit still for a minute. She is constantly moving around, dancing, and singing when she is suppose to be doing her homework. She finds it very difficult to stay focused. You have to constantly repeat yourself to get her to do something and then she moves in slow motion. She does'nt seem to understand prioritizing things. No matter what she is suppose to be doing it takes forever to do it because she becomes distracted by the slightest thing. Sometimes when you talk to her she looks at you as if she does'nt understand what you're talking about. She seems to be a daydreamer. She is very creative, an intellegent when she can stay focused she is suprising. Her teacher feels she is an exceptional athlete. She a sensitive child sometime to sensitive. Yet still in my heart of hearts it feels like something is just not right. Could these things be symbtoms of ADD? From time to time I have thought about having her tested. My consern is finding a competent DR. to properly diagnose her. I am also conserned about hurting her self-esteam. I am afraid that by having her tested that would mean that I am telling her there is something wrong with her and that I am giving up on her. She might think that there must be something wrong with me if mommy thinks there is something wrong with me. Or worst yet give her an excuse not to try. And if she has ADD what about medication? I don't want her to thing that all problems in life are solved with a pill. Is there a biologically base test to determine for sure if a child or adult has ADD? What ever help or advice would be truly appreciated. Truly concerned and in a delima. SUBJECT: Re: daignosis of add? Date: 96-03-24 15:23:30 edt FROM: SusanS29 ADD is markedly consistent with what you have described both at school and at home. If she does have ADD I wouldn't worry about "labeling" her. It is tricky, however, to find a good diagnostician. I would suggest you go to a couple of CHADD meetings (call their headquarters at 305-587-3700 to find out where they meet in your area.) In addition hospitals often run support groups. You aren't going for "support," of course, because you don't know if your child has ADD. BUT-you can network with other parents and find out who in your area does a good job of diagnosing and treating. I don't see how your child could view this as "You're giving up on her." Seems to me you'd be fighting for her. :) SUBJECT: ADHD and anti depressants Date: 96-03-26 02:33:37 edt FROM: Jshirley Maybe someone can help our family. My 8 year old adopted son has been diagnosed with ADHD and for the past 2 years was taking Ritalin for school hours. Thanks to this medication, he was able to stay in a regular classroom. His self-esteem went up. Social relations got a million times better. This weekend my son developed a motor tic in his neck. After consulting with the doctor, we have been told to take our son off the Ritalin for good.. Now our doctor wants our son to start on anti-depressants. Has anyone had any experience with these medications? Do they work well for a child that is ADHD? We would welcome any suggestions! Thank you. please e-mail me at: Jshirley. We appreciate your support. p.s. we are extremely sad to stop the Ritalin-things were going so well for him once he began this medication. SUBJECT: Ritalin-new side effects? Date: 96-04-05 00:39:18 edt FROM: Cbug418 My friend's daughter is on ritalin and she wants to know if anyone has read last weeks Newsweek article on Ritalin and the new side effects like brain shinkage? email me at cbug418...thanks SUBJECT: Re:Ritalin-new side effects? Date: 96-04-06 01:25:59 edt FROM: SusanS29 I haven't seen the NEWSWEEK article but I have it on high authority (researchers) that Ritalin does *not* cause "brain shrinkage." I think this is yet another myth floating around about Ritalin. While we chase the bogeyman under the bed (Ritalin) we miss some very important issues. I can't figure this one out; of all the meds used for ADD Ritalin should be causing the *least* concern-not the most. SUBJECT: Re:NEW FOLDERADHD DIAGNOSIS Date: 96-04-16 22:32:22 edt FROM: KKT123 i FEEL EACH SCHOOL PSYCHOLOGIST NEEDS TO COMPLETE A COMPREHENSIVE EVALUATION AN EACH CHILD REFERRED SUBJECT: Re:Moved Messages Date: 96-04-16 22:39:33 edt FROM: KKT123 I WORK WITH ADD CHILDREN IN A DIAGNOSIS/TREATMENT FORMAT...IT IS VERY IMPORTANT THAT BOTH SCHOOL PERSONELL AND PARENTS WORK TOGETHER SO THAT BEHAVIORS CAN BE EVALUATED ACROSS ENVIRONMENTS. MY BIGEST PROBLEM IS EDUCATING PARENTS FOR THE FIRST TIME. IT IS HARD TO TALK TO PARENTS ABOUT PUTTING THEIR CHILDREN ON MEDICATION. WHAT STRATEGIES WOULD YOU SUGGEST AS A PARENT THAT WOULD BE MOST SUCCESSFUL FROM KKT SUBJECT: Re:NEW FOLDERADHD DIAGNOSIS Date: 96-04-17 17:24:06 edt FROM: SusanS29 KKT please post in both upper and lower case. It's hard to read messages written in all upper case. Thanks. SusanS29, Host SUBJECT: VISION & ADHD Date: 96-04-28 17:19:37 edt FROM: Sporti325i My seven year-old son's school thinks he has ADHD, did some limited testing, said Ritalin was the answer. We took him to our physician who sent us to second doctor for testing. Turns out he has a high IQ (150) but tests low in visual perception areas/processing. So now he's going through another batch of tests... Does anyone have experience in this area? He is very bright, is learning and getting high marks in math and science, but when the class is given a writing assignment the other 27 children in the class will be complete before he has a sentence on the paper. He gets extremely frustrated! Acts up and is distracted by the smallest thing. The second doctor also thinks he has some problems with perfectionism ... are the two sometimes connected? SUBJECT: Re: TOVA test for ADD Date: 96-04-29 01:29:55 edt FROM: Jim fou We took our dyslexic 16 year old to a psychologist who administered a computerized test called TOVA (test of variable attention? or something like that). It measured the speed and consistancy of his responses to a stimulus. Has anyone heard of this test and do they know anything about the validity of it? After reviewing all of the previous testing for LD that we had had done and doing this test, the psychologist reccommended Ritalin. SUBJECT: Re: TOVA test for ADD Date: 96-04-29 03:32:08 edt FROM: PeterCB55 I have worked with this test for the past several years and based on that would offer the following thoughts. When used as "one part" of a comprehensive assessment of attention problems, this measure can "often" make a unique contribution in terms of helping to understand and "capture" deficient attention deployment in action. However, and this is an important howerver, normal limits performances by children or adults on this test as well as other CPT's (continuous performance tests) are not very useful in ruling out the presence of attention problems. Many individuals can "get it together" for a short period of time while still manifesting marked attention problems in other aspects of their lives. In short, if the test does not sample impaired attention deployment in the particular area of weakness for a given individual the result is often a "normal" performance. Hence, "absence of evidence" is not "evidence of absence". I hope this is helpful PeterCB55 SUBJECT: Re: TOVA test for ADD Date: 96-04-29 10:10:46 edt FROM: Jim fou Are you trying to say that if the test does not indicate attention deficit, the child may still have it? Do you ever get "false positives" on this type of test? My son scored at a very low % on impulsivity and consistancy of response on the TOVA and ritalin was reccommended. His IQ is very high, he has never been "hyperactive" or a behavior problem. His main problem is focusing on his studies for any length of time (his mind wanders) and he has a horrible time committing certain things to memory. He requires lots of repetition & lots of time in order to remember things that other bright kids read once & remember. Why have I never read about this particular test in books about ADD? A previous psychologist said his difficulties were because of dyslexia & slow processing speed & did not feel ADD was present. Any advice, we are ready to try the Ritalin out of desperation. SUBJECT: Re: TOVA test for ADD Date: 96-05-01 20:26:02 edt FROM: SusanS29 "Are you trying to say that if the test does not indicate attention deficit, the child may still have it?" Yes, that's what he was saying. He was saying that some people can "pull it together" well enough to test "within normal limits" on the TOVA even though they clearly have ADD or some other problem that affects attention. That's another important point: more than just ADD can cause attentional problems. "His IQ is very high, he has never been "hyperactive" or a behavior problem." It is quite possible to have high IQ, not be a behavior problem and not be hyperactive-and still have ADD. That describes both me and my daughter, and we both have ADD. Dyslexia and slow processing speed are quite common with ADD. So those findings don't rule it out. I would say interview the person, have him defend the conclusion of ADD. ADD diagnosis is the process of first making sure ADD is a plausible explanation of the problems, and second making sure that they aren't better explained some other way. SUBJECT: Definition od ADHD Date: 96-05-03 09:16:22 edt FROM: MAC1192 Could someone please give me a working definition of ADHD and the symptoms shown? Thanks SUBJECT: add/adhd Date: 96-05-04 21:48:43 edt FROM: Jamonit44 I'm new to the net... After four unsucessful medication trials with my six your old son, I am beginning to look at more holistic cures for tackle our ADHD problem. He biochemically has an extremely sensitive body to everything - touch, taste, smells, etec.. including medicines. Although I have seen some very postive benefits of medication,. the side effects were too disturbing for a boy so young. I am focusing on a high protein diet - something he constanttly craves - protein. Someone mentioned to me the idea of blue-green algae. Can anyone give me feedback or ideas on that? SUBJECT: Re: TOVA test for ADD Date: 96-05-06 03:12:32 edt FROM: PeterCB55 In answer to your second question, yes. .. It is not at all uncommon for individuals with strong intellectual skills to obtain a "normal" limits performance on a measures of attention such as the TOVA, the Vigil, or the Connors CPT, etc, etc. Further, I would guess that the false negative rate is quite a bit higher for relatively "bright" individuals and females compared with males of average IQ. I am not sure about the specific rate of false positives with this measure. However, I can tell you that even with an "abnormal" profile on this or other similar tests the results need to be considered in light of the individuals' history, current symptom patterns and other independent measures of attention as well as related phenomena (e.g., mood, stressors, intellectual performance, and academic achievement). The essential weakness of relying on any single measure to "test" attention skills is simply that attention is a theoretical construct that is composed of many different dimensions (skills) that can be sampled by various measures. A single measure that is out of the normal range is not by itself particularly meaningful. However, an abnormal performance that is highly consistent with independent observer ratings, past history and self-report is more likely to have diagnostic significance. With high functioning children/adults care needs to be taken to sample attention skills in a manner likely to "capture" those aspects of everyday performance that are vulnerable to disruption. and then to determine whether the evidence corresponds to real world difficulties based on self-report or ratings measures, as well as to "rule out" other plausable explanations. This is likely one of the reasons why some individuals with attention problems go undetected. Assessments that base conclusions solely on test scores tend to be insensitive to the nuances of individual adaptation to one's own strengths and weaknesses. For example, some individuals use compensatory skills to cope with challenging situations and can effectively mask or override their weaknesses for brief periods of time, leaving us to wonder, "how can they do those things so well today, but not tomorrow". Regards PeterCB55 SUBJECT: RE:VISION &ADHD Date: 96-05-07 19:40:41 edt FROM: KevisB To Sporti... your son sounds very similar to ours, now 9. He has never been diagnosed as ADD however. Our psychologist thinks that his odd behavior and troubles writing can be accounted for by the visual/motor processing problem. We also found he had sensory integration problems and are taking him to an OT for therapy. Writing is still very frustrating for him-at the beginning of the year he even viewed a sheet of math problems as a "writing assignment" and had a lot of difficulty focusing because writing was still so difficult. Last year he was taught typing on the computer as it was felt that it might be faster for him. However he seems to be a slow processer on the typewriter as well, as many of the kids who have just learned touch typing in third grade have passed him up in speed. The OT seems to be helping his handwriting speed. I'm not so sure he isn't ADHD, but every expert seems to have a different opinion. Kevis SUBJECT: Re:RE:VISION &ADHD Date: 96-05-11 18:03:17 edt FROM: Hlbarnett To KevisB: thanks for the input. Since I posted my message, our son concluded his vision testing and we learned that he does have visual organization and tracking problems. He also has latent far sightedness-in other words, he is slightly far sighted, however his young eyes work extra hard to compensate. He starts vision therapy next week. We are also working on a perfectionism problem the psychologist says is making him quit rather than risk doing something not quite right. Looks like an intereting summer! Most importantly, however, we did not put him directly into Ritalen therapy like the SCHOOL Phsycolgist suggested. He has been through hours of testing -- the doctors all commented that an ADHD child would have been far less cooperative and able to wait patiently between tests, etc. Good luck with your son! SUBJECT: Re:RE:VISION &ADHD Date: 96-05-12 13:33:01 edt FROM: SusanS29 "To KevisB: thanks for the input. Since I posted my message, our son concluded his vision testing and we learned that he does have visual organization and tracking problems. He also has latent far sightedness-in other words, he is slightly far sighted, however his young eyes work extra hard to compensate. " How old is he? All young children are inherently far-sighted. SUBJECT: Re: RE:VISION &ADHD Date: 96-05-12 13:35:46 edt FROM: SusanS29 "-the doctors all commented that an ADHD child would have been far less cooperative and able to wait patiently between tests, etc." I'm not saying your child has ADHD, and I'm certainly not saying your child should be on medication... but it simply isn't true that because your child exhibited a certain level of patience and cooperation, one-on-one, does *not* mean there is no attentional problem. One-one-one with a pscyhologist, with fascinating tasks (and the tests are inherently interesting), an interesting adult focused entirely on that one child, etc.-it's the best possible situation for a child with an attentional problem. They're often at their best, not their worst, under such situations. Not telling you what to do. On the other hand I wouldn't want to mislead other parents. In particular, children with ADD (no hyperactivity) could behave exactly as you described and yet still have a very serious attentional problem. SUBJECT: Sugar and Hyperactivity Date: 96-05-19 23:07:13 edt FROM: Oynk oynk A (very) long time ago I posted (in answer to a question) that I had seen a study that said ADD kids got more hyper under sugar, but not non ADD kids. Anyway, in cleaning out my end of the year files I finally found the study. Here it is for what its worth: Nancy L. Girardi, et al., "Blunted catecholamine responses after glucose ingestion in children with attention deficit disorder," Pediatric Research 38(4):539-542, 1995 In a nutshell ADD children had a rise in epinephrine 3 -5 hours after ingesting sugar, but non-adhd kids did not. Take with a grain of salt (or maybe sugar) but it is interesting. Jeanne (jwestpha@pen.k12.va.us) (email me there as I am leaving AOL) SUBJECT: Re: Sugar and Hyperactivity Date: 96-05-25 09:07:17 edt FROM: Ratatat >> In a nutshell ADD children had a rise in epinephrine 3 -5 hours after ingesting sugar, but non-adhd kids did not. Take with a grain of salt (or maybe sugar) but it is interesting.<< Interesting, because all the reports I have read have not supported this. There is a file in the Special Education Library on sugar/behavior research. Recently too, the ADHD Report (edited by Russell Barkley) had a report that did not support this either. Hmmm. SUBJECT: TOVA test for ADD Date: 96-05-27 01:56:02 edt FROM: D90MYT The TOVA has been around for over 20 years and is a good screen for ADD. You can find out who gives the test in your area by calling 1-800-PAY-ATTN. As a psychologist, I have given over 1,000 in the last 6 years. As others have mentioned, it is one part of a full battery. I also give the quanitative EEQ because the TOVA measures response to medication. It often shows that less medication will be better than the usualy 10-20 mg that many physicians begin to give. The TOVA has shown that response to medication is bi-modal, that is, higher dosages control involuntary movement, while lower doses help learning. Unfortunately there is not much overlap. So one may have to choose what one wants to help with the medication. Many want to use medication to control involunatry movement while using other treatements such as neurotherapy to help the learning. Over 5000 professionals nationwide use the TOVA. As improvements in controlling hyperactivity can be accomplshed by as little as one mg, the test should be used to avoid overmedication which produces decreased hyaperactivity control and increases side effects and toxic effects. Nick Fenger, Ph.D. D90MYT SUBJECT: Re:TOVA test for ADD Date: 96-05-27 11:42:20 edt FROM: Ratatat <> Having attending three major multi-day conferences in the past year, this is the first time I have ever heard this mentioned. Do you happen to have any research cites that I can explore to back this up. I plan to share it with some researchers here who work in a major medical center and share some research activities with R. Barkley to see what they say. This is very curious - more that I have never heard of it than anything else. My antennae is jingling. SUBJECT: Re:meds, side effects, conce Date: 96-05-27 23:07:00 edt FROM: Shebasox I have a child on cylert. Has been taking it for about 1 year. Does anyone have any good or bad experiences with this medication. You can Email me -screen name is Shebasox. SUBJECT: Nortriptylyn/supplements Date: 96-05-31 21:50:39 edt FROM: JEAND05 I am new to this board, reading to learn how to help my 17 year old daughter with ADD. She took Ritalin last year and it worked like a charm, but this year she got shaky and had diminished results. Tried to fine-tune the dosage but she ended up going off Ritalin totally. Tried Cylert, that had this normally sweet mild-mannered girl bouncing her little sister off the wall. That was all prescribed by a neurologist. Now she is seeing a psychologist who says she has depression and anxiety over her academic performance, in addition to the ADD. She refered us to a child psychiatrist who is prescribing Nortriptylyn (sp?). Does anyone have experience with tri-cyclic antidepressents in treatment of ADD? This is her 7th day of gradual dosage so no changes yet. Meanwhile.... my sister-in-law has sent info on Blue Green Algae supplements, which she says may help with ADD. What the heck is that? She is a distributor. I won't do that, at least not while we're trying the Nortryptylin, but has anyone heard of the algae stuff? What a wealth of knowledge there is in this forum, especially from SusanS29 and Ratatat. Thanks for sharing. SusanS29, I had to laugh when I read your post of several months ago about how ADDers load the dishwasher. Gee, doesn't EVERYBODY do it that way??!!:) SUBJECT: Re:Nortriptylyn/supplements Date: 96-06-01 12:07:27 edt FROM: Ratatat << That was all prescribed by a neurologist. Now she is seeing a psychologist who says she has depression and anxiety over her academic performance, in addition to the ADD. She refered us to a child psychiatrist who is prescribing Nortriptylyn (sp?). Does anyone have experience with tri-cyclic antidepressents in treatment of ADD? This is her 7th day of gradual dosage so no changes yet.>?> There are now 4 stimulant mediations in the arsenal which are usually "rated" in tiers of preferred usage based on how well they work and how much is know about how they work. Tier 1: Ritalin, Tier 2: Dexadrine, Tier 3: Cylert and Tier 4: Adderall. Adderall is the new kid on the block, and so far is showing some really amazing results from antecdodal reports....ones in this household included! My 16 year old son has just switched from Ritalin to Adderall because of an onset of jitteryness, which we learned is pretty common with teenagers on Ritalin. Normally, when this happens these teenagers would have been switched to Dexadrine spansules. For whatever reason, their hormone-laden bodies seem to do well with the change to Dex. My son's doctor is very current with medications and his first response when we knew we were facing a change was to try Adderall. It has been very, very positive for my son. I don't know (can't guess) the tricyclant anti-depressant your child is taking, but according to what I have read the tricylclants can be effective for some people with ADD. It ususally takes quite a long time for the optimal effect to be evident. And, the dose for treating ADD is extremely small (they call it a micro-dose). For some people it can address problems of hyperactivity and distractibility, but not the impulsivity. The doses for treating depression are much higher, and some people can develop some side effects (dry mouth, sleepiness or constipation) that they really can't tolerate. It is, or course, possible to develop depression from having ADD symptoms causing a life of struggle and frustration. Sometimes it is important to try to treat the depression first, and for other people they do best if the ADD is treated. It's not the same for any two people. But, to treat depression it really, in my experience, helps to have a psychiatrist or psychologist involved as it is a disorder of the moods, rather than neurological pathology. Have you considered having your child be seen by a mental health worker who is up to date on ADD and it's "handmaidens," namely, depression and anxiety? You might look for a book by Larry Silver, MD on Attention Deficit Disorder. He does a really responsible job of hitting all the bases and writing in plan English - plus he knows the ins and outs of medications well. SUBJECT: Re: Nortriptylyn/supplements Date: 96-06-01 14:33:18 edt FROM: PeterCB55 Nortriptyline is often used when "first tier" stimulants are either not sufficiently effective, there are comorbid symptoms of anxiety/depression, or side effects associated with the sole use of stimulants preclude their continued use. Many consider Impramine, Nortryptyline, and Desipramine to be the drugs of choice after the stimulants. However, lately, other drugs like Wellbutrin (an atypical antidepressant) are also receiving consideration, given reports of it's efficacy with both depressive and "core" attention problems (especially anger management, mood, and in some cases concentration and sustained attention). Limited information suggests that the tricyclic antidepressants can be helpful with hyperactivity and mood related symptoms more so than with core attention variables (e.g., distractibility, concentration and so on). Some concerns about sedation have been reported, and monitoring is important. I have seen mixed results among those I happen to work with who have taken Nortriptyine. Again, maintaining a hopeful, but realistic attitude is important, because, often no one really knows until medications are tried and then titrated for awhile if they are going to work and at what cost. Further, a willingness to measure effects against key symptoms also remains an important issue here. Be sure to identify with the physician/psychiatrist, what symptoms you are hoping to help and then set up several ways to measure changes. Regards PeterCB55 SUBJECT: Re:Nortriptylyn/supplements Date: 96-06-01 14:44:30 edt FROM: SusanS29 "There are now 4 stimulant mediations in the arsenal which are usually "rated" in tiers of preferred usage based on how well they work and how much is know about how they work. Tier 1: Ritalin, Tier 2: Dexadrine, Tier 3: Cylert and Tier 4: Adderall. " I am proud to say I was saying this a year ago (grin): I predict that within five years Adderall will be number one and Ritalin number 2. In fact when Adderall becomes number one choice, Dexedrine may become number 2... Given the increasingly-positive reports about Adderall it may happen in less than five years but I'm convinced it will happen. SUBJECT: Montessori/ADD/success Date: 96-06-01 17:21:33 edt FROM: Mayclinsk We have had our 8-year-old, gifted, "ADHD" niece visiting for 6 weeks - as an alternative to perscribed Ritilin. We have been using Montessori philosophy and practice in our home with her (from Essential Montessori, available by mail, $5, 707-826-1557) with great success! With respected concentration, hands on learning, being able to balance still and moving work (all Montessori), plus the removal of sugar and TV, we have seen miracles within this time. I hope this helps someone else. SUBJECT: Passive- Aggressive/ADHD Date: 96-06-02 12:47:12 edt FROM: Phash Need info. on comorbidity. of ADHD and Passive Aggressive. Thanks. SUBJECT: Re: Nortriptylyn/supplements Date: 96-06-03 21:37:50 edt FROM: Ratatat <> True, Peter, but usually after at least Ritalin AND Dexadrine (and now maybe Adderall and Cylert) have been tried. At one conference I attended recently the was some strong feeling that ALL individuals diagnosed with ADD being given a trial of Rit and Dex (even if they respond well the first med attempted, because sometimes they can respond even better to the other...and it is good to know it is there in the "arsenal" for later use should it be needed. SUBJECT: Nortriptylyn/Supplements Date: 96-06-03 22:27:03 edt FROM: JEAND05 Thanks, all, for the input on Nortriptylyn vs ritalin, etc. Does anyone have any info on this Super Blue Green Algae stuff? Is it worth looking into? I'm skeptical. SUBJECT: Re:Nortriptylyn/supplements Date: 96-06-05 16:22:47 edt FROM: SusanS29 I would go even further and say that Adderall *really should be tried* before giving up on stimulants. I've heard numerous reports of it helping when nothing else seemed to (or the side-effects were intolerable). SUBJECT: Re: Nortriptylyn/Supplements Date: 96-06-05 16:24:32 edt FROM: SusanS29 "Does anyone have any info on this Super Blue Green Algae stuff? Is it worth looking into? I'm skeptical." It's sold via multi-level marketing. I've been sent the literature by numerous individuals. Although they claim to have research proving its effectiveness, they never send it. I would insist on a money-back guarantee. Then have your pharmacist set up a double-blind study for you with it, so you don't know when the Blue-green is used and when a placebo is used. That should tell you definitively whether it helps or not. If it doesn't, get your money back. SUBJECT: Re:TOVA test for ADD Date: 96-06-09 09:44:18 edt FROM: PeterCB55 Ratatat, Apologies for not following up on your last message regarding citations for the Test of Variables of Attention. I will post a few of the more current ones that I have available, when I retrieve the manual from the office :) When I first began working with Continuous Performance Tasks to assess attention skills, they were being touted as the "new" screening instrument that would function as a standalone diagnostic tool. Fortunately, reality set in and the claims now are both more modest and realistic. In addition, when used as part of a larger battery, they can add a source of data that is very difficult to obtain from ratings instruments and test scores. The sensitivity of the measure, with those individuals who display out of normal-range performances on the instrument is quite good (e.g., about 90%). The latest figure (I have heard) on the rate of false positives runs around 25-30% depending upon the group you are sampling. Other CPT's are available, and you should be able to get similar information on their performance characteristics as well. The notion of a bimodal response to stimulant medications, however, is not particularly new. This information has been around for awhile, although it is, I suspect just one of those pieces of detail information that doesn't get consistently spread around. Hechtman discusses this point in depth in her book, ADHD Children Grown Up, (2nd Ed) in an excellent chapter in the back of the book on advances in the field. Essentially, children with ADHD: Impulsive/Hyperactive type or mixed type can be considered as candidates for treatment with stimulants at relatively higher dose levels, with the expectancy that they will more likely show benefit than a similar group of children with ADHD without hyperactivity. Children with ADHD: predomantly inattentive type, tend to respond more favorably to lower doses as compared to higher doses, while children with ADD+ can benefit from a greater range of dosing. I hope this is usefull PeterCB55 SUBJECT: Re:TOVA test for ADD Date: 96-06-13 14:37:27 edt FROM: Socadream Our local CHADD group has had Dr. Clifford Corman, M.D. of Univeral Attention Disorders, Inc. speak before our members on many occasions. He knows a great deal about the TOVA and different medications, dosage etc... He also has a lot of data along the same line. He uses the TOVA as a tool to determine the right dose for each person too. (sometimes it involves taking the test for a baseline, meds, retaking, and then depending on the results, different dosage, then retaking the test again.) He knows quite a lot.... I would recommended other proffesionanls give him a call at (800) 729-2886. (he's also the parent of ADD'ers). SUBJECT: Vision & ADHD Date: 96-06-14 04:00:57 edt FROM: Happy LAF My daughter is now 16. I am a Spec. Ed teacher - I have read everything I can find on ADD/ADHD to help in my profession. Unfortunately, many teachers know very little about the disorder and many think that it's not real. Children with visual processing/tracking problems can still have ADD/ADHD. My daughter has visual processing/tracking problems as well as severe dyslexic-like tendancies that have been identified since Kindergarden. I'm not just talking about a few normal reversals here and there which are seen in K-3rd grade. What I didn't see was the ADD - although now, I can look back and know she has always had it. I couldn't see it because I have ADD. By the way, my daughter has not been in special ed classes, but I do work with her at home as needed. I hear this over and over from people all the time "My child has a very high IQ - there's no way they can have ADHD". Sorry folks, but ADHD has nothing to do with IQ. It doesn't mean that your child isn't smart, very smart, and even gifted - ADHD has nothing to do with intelligence other than the fact that it can adversely affect IQ scores and give somewhat of a false reading on the low side. Because I also have the disorder, the best way for me to describe it is to say that my brain is so active I think about 10 things at once and hear every sound around me. I have not taken Ritalin. However, let me say this. I was only recently diagnosed with the disorder by someone very good in the field. When I was in school, elementary and all through high school I knew there was something different and it was frustrating, but I wasn't sure what it was - I wish I could have taken ritalin then so I wouldn't have had to study so much to get a lousy C or D. In my Bachelor's and Master's program I was only a few points away from a 4.0. But somehow I found what to do to help myself. I have seen what a tremendous ritalin has made in my students that have serious problems with the disorder and it has been phenomenol. As a parent, this is a hard decision but I feel it would not be acting in my daughter's best interest if I denied her the benefit of medication. I urge you to read several books about the disorder and how the medication works before making any decisions. SUBJECT: Is add/adhd real? Date: 96-06-22 12:53:47 edt FROM: IthnkIcn <> From the Ritalin package insert: "Drug treatment should not and need not be indefinite and usually may be discontinued after puberty. Prescription should not depend solely on the presence of one or more of the behavioral characteristics." I'm glad you took your son off of Ritalin. Have you checked the Physician's Desk Reference for information about Adderall? It's not also a Class II addictive drug, I hope. Is CIBA also the manufacturer of Adderall? <> What ever happened to the "Just Say No" approach to drugs? CIBA (Ritalin manufacturer and major funder of CHADD) claims, "Drug treatment is not indicated in all cases of this behavioral syndrome and should be considred only in light of the complete history and evaluation of the child." <> I don't think it's real, either. _If_ it is, it affects 3-5% of the population, not 14-30% . Homeschoolers are proving that dyslexia is a gift, not a disorder, and that ADD doesn't exist outside of school. It all depends on your point of view. ADD means a creative, active child. That's only a problem in school. As you are an avid reader and educator, I'd like to pass on some books that come highly recommended - "The Myth of the ADD Child," by Thomas Armstrong (50 ways to improve you child's behavior and attention span without drugs, labels, or coercion). He wrote another book - I think it's called Bringing out the Natural Genius in Every Child, but I'm not sure about that being the exact title. Also, "The Myth of the Hyperactive Child," by Schrag and Divoky, and there's another book called, I think, "The Gift of Dyslexia," although I'm not sure who the author is. I find it interesting that Thomas Edison is mentioned in books about Gifted, ADD, ADHD, dyslexia, learning disabled, and homeschooling - yet he got none of these labels. His mom pulled him out of school in 1st or 2nd grade when his teacher said he was "addled" . <<"My child has a very high IQ - there's no way they can have ADHD". Sorry folks, but ADHD has nothing to do with IQ. It doesn't mean that your child isn't smart, very smart, and even gifted - ADHD has nothing to do with intelligence other than the fact that it can adversely affect IQ scores and give somewhat of a false reading on the low side.<< ADHD (hyperkinetic child syndrome) is another (more negative) way of explaining one of the various signs of giftedness. There is more information on ADHD, LD, ADD, Giftedness at this Web site: National Foundation for Gifted and Creative Children http://www.nfgcc.oa.net 395 Diamond Hill Road Warwick, RI 02886 If you don't have web access, they have a free parents packet available through snail mail. If you would like more information on Gifted and ADHD, there's some in the folder at keyword Gifted - ADD, LD, ADHD folder. You might want to log this folder to read offline as it's quite large. << Because I also have the disorder, the best way for me to describe it is to say that my brain is so active I think about 10 things at once and hear every sound around me.>> These are also signs of giftedness. As CHADD recommends, it's best to focus on the positives. Teri SUBJECT: Re:Is add/adhd real? Date: 96-06-22 17:08:57 edt FROM: SusanS29 "Is CIBA also the manufacturer of Adderall?" No, it's not, and I might recommend that you be at least marginally knowledgeable about a medication before commenting on it. The package insert from Ritalin is based on the original research done by Ciba and does not reflect the mountain of research done since then. Since Ciba didn't do it, that's appropriate. HOWEVER, Ritalin has since been shown to be both safe and effective for 1) long term use and 2) use past puberty. "What ever happened to the "Just Say No" approach to drugs?" Nothing, except perhaps a distortion. "Just Say No" certainly doesn't mean needed, prescribede medications. For instance, it doesn't mean I should skip antibiotics when I have strep throat, and it doesn't mean diabetics should throw their insulin away. It means (as you well know) that youth should avoid *illegal* drugs. It was never intended to suggest that people shouldn't take properly prescribed medications. "I don't think it's real, either." Just remember that the purpose of this area is to *support* those dealing with the problem. You're entitled to your view, but let's remember that people are dealing with very real problems here. "ADD means a creative, active child. That's only a problem in school." Well, no, it really doesn't. One of the diagnostic criteria is that the problem has to be present in multiple settings. If the symptoms are only positive (i.e., creative), and only present at school-it isn't ADD. ""The Myth of the ADD Child," by Thomas Armstrong" I would like to recommend a different book as in my opinion Armstrong's book is full of lots of misinformation and ill-based assumptions. I would recommend instead a new book out called BEYOND RITALIN which gives intelligent discussion of non-medical approaches to ADD/ADHD. "I find it interesting that Thomas Edison is mentioned in books about Gifted, ADD, ADHD, dyslexia, learning disabled, and homeschooling - yet he got none of these labels." Well, of course not... we didn't diagnose any of those things when he was in school. Instead we called children names such as ... addled. "ADHD (hyperkinetic child syndrome) is another (more negative) way of explaining one of the various signs of giftedness." Only in the hands of wholly-incompetent diagnostians. And "Hyperkinetic child syndrome" is a label dating back at least 20 years from a time when we readlly didn't understand ADD/ADHD at all. I hope people won't conclude from all this that if their child isn't hyperactive he or she can't be gifted. But more importantly, there's a lot of *wasted talent* out there because a gifted child with ADD couldn't tap into his or her strengths because of the interference of the ADD. it's far more common than people realize. ADD can interfere with a child's (or adult's) strengths as well as weaknesses. AND-parents don't have to make a choice. They can address both the giftedness and the ADD (if it's present; this is an ADD folder after all)... and they'd be smart to do so. SUBJECT: Risperodone Date: 96-06-25 23:59:02 edt FROM: DLM6606 Any experience with using a new drug risperodone, would be appreciated. Our son has severe ADHD, is LD has OCD and ODD. He is 7 and in spec. ed. He has been on Ritalin since 3. WE have tried Tofranil, Clonidine, Prozac, Mellaril, Dexadrine. Currently he is on a trial dose of Risperadone, .5 mg. in the am and .5 mg and .1 mg of Clonidine at bedtime. He has been evaluated well and we are pleased with his MD. Any advise, help or info on this fairly new drug would be helpful. Also if any of you think of an expert in dealing with ADHD in children that you think highly of in the Fort Worth-Dallas area, let me know. Thanks. SUBJECT: Re: Risperodone Date: 96-06-26 01:14:05 edt FROM: PeterCB55 Resperidone is a relatively new drug that is beginning to find use in combination with other drugs (e.g., like stimulants) or alone to treat children with combinations of symptoms not easily managed by other drugs. It is described as a "nonsedating" antispsychotic medication, in part because of it's ability to address in whole or part children struggling with severe symptoms of agitation, anxiety, low mood and in some situations intrusive thoughts and poorly controlled anger outbursts. It is being used mostly on an experimental basis with children as there appears to be as yet little in the way of controlled studies to learn from in this population. However, clinical reports from colleagues suggest that it can be helpful, particularly in children who appear to have rather complex and/or hard to treat combinations of ADD and mood/anxiety/thought disturbances and they have not been responsive to other more common medications. PeterCB55 SUBJECT: Re:Risperodone Date: 96-06-26 22:35:33 edt FROM: DLM6606 Thank you PeterCB55- appreciate the info. My husband and I are from medical backgrounds, he a Physician and I am a psychiatric nurse. I am hoping to talk with other parents , teachers or medical professionals who children or patients are on the drug. I know it is experimental in children, I pray it helps our son Benjamin. SUBJECT: Re:Is add/adhd real? Date: 96-06-28 20:05:26 edt FROM: Ratatat << "Drug treatment should not and need not be indefinite and usually may be discontinued after puberty. Prescription should not depend solely on the presence of one or more of the behavioral characteristics." >. Oh, dear me. I can see where this comes from now. Scientific research shows that at puberty ADD changes along with the upsurge of hormones. It does not go away. ADD is a lifelong disability and it is real. Discontinuing medication that helps alleviate the symptoms is not helpful to someone who needs the theraputic medical support. Those cautions in the inserts are not to be taken as gospel, but rather are printed to provide a printed CYA by the drug manufacturer because we live in the world of law suits. And no, Adderall is not made by Ciba...but then I don't know that that has to do with it anyway... unless one gets information from the popular press and TV and has made decisions based on presentations that were designed to skew the reader/viewers perceptions. SUBJECT: Re:Is add/adhd real? Date: 96-06-28 20:16:30 edt FROM: Ratatat << I don't think it's real, either. _If_ it is, it affects 3-5% of the population, not 14-30% . Homeschoolers are proving that dyslexia is a gift, not a disorder, and that ADD doesn't exist outside of school. >> All I can say is this: Why are you bothering to post message (of some length) in an area that is designed to provide support to people who need factual information and informed opinions? If you don't believe that ADD exists "outside of school" I can think of a number of children who I could arrange to be "loaned" to you for a couple of weeks; then we would see if you still feel that way! Tornadoes at school and home. Believe me it's real, and no matter what kind of positive spin one wants to place on their level of energy it is still debilitating for families who must deal with it. <> I have uploaded an several files on reliable books about ADD in the library for anyone who wants to download and review later are welcome to. SUBJECT: Re:Is add/adhd real? Date: 96-06-28 20:17:50 edt FROM: Ratatat <> These are not drugs. These are prescribed medications. And, of course, drug treatment is only considered after a complete history and evaluation. To suggest anything else is responsible. I will say that if medication is recommended that Adderall might well become a best first choice for many people. Oh, and though I know that Merrow (on PBS no less) said that Ciba is a major contributor to CHADD, it just isn't accurate The amount of money that Ciba provided to CHADD for public education programs was a small percentage of their overall budget. In the name of fairness, have you investigated how much money the manufacturers of asthma medications donate to the national asthma support groups? Ditto for diabetes, cancer, depression, and so on. Be fair. SUBJECT: Treating the Whole Child Date: 96-06-28 23:53:05 edt FROM: Krcaccavo Our daughter is 12 and we are at a point of wanting to reevaluate her therapy needs and medication (she's on Ritalin and complains of 'high highs and low lows") We'd like a holistic approach-a person or team who will look at the whole picture and sort out the medication effects/hormones-puberty/social issues. Etc. Does anyone in the NYC area (we're in northern suburbs) know of any such group or caring doctor willing to work on such a micro-managemnt level? SUBJECT: Re:Is add/adhd real? Date: 96-06-30 09:00:21 edt FROM: SusanS29 "Oh, dear me. I can see where this comes from now. Scientific research shows that at puberty ADD changes along with the upsurge of hormones. " That's right, Ratatat. The PDR information is written *when the company does the research.* They do *not* update their PDR information based on other people's subsequent research, even when that research provides *lots* of important new information about either the med or the condition it helps manage. Any doctor who stops with the PDR for medication research is a bad doctor who ought to be drummed out of the business. Any non-medical person who does that... just doesn't know how to do medical research. SUBJECT: Re:Is add/adhd real? Date: 96-06-30 09:07:08 edt FROM: SusanS29 "CIBA (Ritalin manufacturer and major funder of CHADD) claims, "Drug treatment is not indicated in all cases of this behavioral syndrome and should be considred only in light of the complete history and evaluation of the child." >>" Yes, of course. Where anyone would get "Just say no" to things like Heroin and Cocaine from that is beyond me, though... As host of this board I really *don't* like it when people come in here and say inaccurate or negative things about either ADD/ADHD or its treatment. However, if I see no TOS violation I'm obligated to leave it. People should realize, however that at *some point,* coming into a support area and posting disruptive, negative posts about the subject is *truly* disruptive. *At some point* it becomes the equivalent of walking into the community's Senior Citizen Center and hollering that anyone who receives social security is a leech, that old people are a train on our finite medical resources, etc. To anyone who comes to this area with a desire to say negative things about this serious problem, I urge you to use keyword: TOS. Please review the rules, particularly about being disruptive. Because at some point that's what it becomes. SusanS29, Host Special Education Forum SUBJECT: Re:Treating the Whole Child Date: 96-06-30 09:13:58 edt FROM: SusanS29 ""Our daughter is 12 and we are at a point of wanting to reevaluate her therapy needs and medication (she's on Ritalin and complains of 'high highs and low lows") We'd like a holistic approach-a person or team who will look at the whole picture and sort out the medication effects/hormones-puberty/social issues. Etc." GOOD FOR YOU. A holistic approach is the *only* sound way to go with ADD. ADD is profoundly affected by the person's personality and the person's envioronment. Now I don't mean that there's something "wrong" in the environment or "wrong" with their personality. We're just all so individual even without ADD, and environments vary quite appropriately." 99% of the time (or more) if the diagnosis is done by a pediatrician, that holistic approach won't be taken, but I think it's crucial at puberty in particular. Once that is done, if it still seems as if medication may be appropriate, look at Adderall. The one thing many people say about it is that there are no "highs and lows" with it. Its effect is very smooth. If she responds best to Ritalin, then the dosage and timing can be carefully tweaked to eliminate or nearly eliminate those highs and lows in the *great* majority of cases, but it will take someone with a lot of experience managing it. Many doctors, for instance, don't realize that for many people taking the same dosage (or *slightly* lower) every three hours instead of every four can just about eliminate those highs and lows. And a half dose at the end of the day (say she takes it every three hours, with the last dose at 1PM) she can take half of it at 4PM and taper it off gracefully. Sometimes this is necessary because Ritalin is extremely fast-acting. It works fast and leaves the body very fast-sometimes so fast that it triggers the highs and lows. I can't give you a specific name, but at this crucial age where her true desire for independence and increased ability to make decisions will emerge, make certain it's someone who will listen to her as well as you and treat what she reports with respect. She shouldn't have to put up with those highs and lows, but to get that solved the professionals will have to treat her observations with serious regard. My "children" (14 and almost 17) were just back to their pediatric neurologist for a follow-up. He listened very carefully to what they had to say, and they came out with a very good attitude. I think it's because they feel (and know they are) active participants in the process. SUBJECT: Re:Is add/adhd real? Date: 96-06-30 10:46:58 edt FROM: Ratatat <> Well, I checked out the web page...and was NOT impressed. The GCC's own documents are scans of newspaper articles from the 1970's and are about the founder's campaign against drugging children - and not based on any facts. I did not see any objective or balance information provided, but rather merely opinions and conjecture from the founder of the GCC. The links are few and to areas that support the founder's position (of course), and again, do not provide an objective or balanced viewpoint. I highly recommend that if someone really wants to investigate a good web page on ADHD that they check out the page of Professor Sidney Zental at Purdue. Her web page is: http://www.cs.purdue.edu/homes/tyang/sydney/welcome.html It is quite remarkable. SUBJECT: New idea on ADHD Date: 96-07-01 20:37:36 edt FROM: HAMMUROBI I have just atteneded a conference that discussed ADHD. Dr Ray Levy who specializes in treating ADHD put forth two ideas that where new to me. 1 that ADHD is not a deficit in attnetion but rather one in motivation. These kids get less stimulation from rewards and punishments. 2) he presented a method of treatment that focused on developing their ability to make choices considering the consequences. Was very interesting...Does anyone have any information about these ideas? SUBJECT: Re:New idea on ADHD Date: 96-07-01 23:42:25 edt FROM: SusanS29 "Dr Ray Levy who specializes in treating ADHD put forth two ideas that where new to me. 1 that ADHD is not a deficit in attnetion but rather one in motivation. These kids get less stimulation from rewards and punishments. 2) he presented a method of treatment that focused on developing their ability to make choices considering the consequences. Was very interesting...Does anyone have any information about these ideas?" He doesn't mean motivation as in making the child want to do it more, I hope. That kind of motivation is *not* the issue. Also "considering the consequences" can have *limited* success, but the real problem is that the kdis respond impulsively. They go through life like this: Ready-FIRE!!!! -- ooops-AIM! The very nature of the brain under the influence of ADD discourages "considering the consequences." And... it's not a new idea. If he's talking about "motivation" as in "Make him want to do his math" he's terribly wrong. If he's talking about "motivation" at a neuro-chemical level it's interesting but doesn't really point toward a solution, in my opinion. I *hope* he doesn't mean that these kids "just need toa get more motivated." SUBJECT: Re:New idea on ADHD Date: 96-07-04 09:44:49 edt FROM: PeterCB55 Barkley, in his 1990 text " Attention Deficit Hyperactivity Disorder": A Handbook for Diagnosis and Treatment" discusses this hypothesis, which he felt "captured" key underlying elements of the disorder based upon his interpretation of the research literature (at that time). However, I would also mention that both he and others in the field have largely moved on to other possibly less "fuzzy" constructs, and are now suggesting that the "core" features (of ADD) such as they might exist, reflect a collection of self-regulatory deficits that impair on a variable basis (e.g., within the affected individual) selective attention, encoding, organization of information, sustained attention, response inhibition, "prolongation" of information in working memory, and retrieval. In recent talks, Barkley has drawn attention (excuse the pun please) to the writings of Jacob Brownowski. Barkley explains these ideas, in his "Taking Charge of ADHD" book. The good news is that Barkley is willing to pursue the "Big" question of underlying constructs, and the bad news is that Attention Deficits are likely a product of numerous underlying neurological deficits and insults that reflect the diverse population of individuals affected with the disorder (e.g., those who manifest ADD via Lead exposure, via genetic inheritance, via car accident and prenatal alcohol exposure, so on). While I am personally soothed by the notion that ADD might reflect the effects of a single underlying theoretical construct (kind of like being able to explain behavior in terms of paired learning or alternatively, explaining behavior in terms of paired forgetting), I would like to point out that other researchers in the field also have some interesting ideas to add to the picture. For example, Allen Mirsky at NIMH suggests that a set of interrelated attention skills may be deficient (in a variable fashion) that include, sustained attention, alertness, focus-execute skills, mental flexibility, response inhbition and concentration. These core attention "factors" in his forumulation are taken as relatively stable elements (at a group level) that may be impaired differently among individuals. Regards PeterCB55 SUBJECT: Re:New idea on ADHD Date: 96-07-04 09:47:08 edt FROM: PeterCB55 Addendum to SusanS29's note. A guest on the Phil Donahue show several months ago also put it well when she said that she sufferred from "on the mind, out the mouth" syndrome. If it is in my mind it must be worth saying. :) PeterCB55 SUBJECT: Re:ADD & LD Date: 96-07-20 13:18:01 edt FROM: LOISGRAHAM I have been doing research for my graduate work and I have read that bedwetting in a characteristic of ADD. SUBJECT: Ithnkkn's beliefs Date: 96-07-22 23:52:48 edt FROM: CurrieKM It's hard to believe that anyone would post those beliefs...nice responses Ratatat and Susan. Maybe it was to liven things up a bit! ALso, I love reading your info, Dr. Peter ;). CurrieKM SUBJECT: ADD/LD Sensory integration Date: 96-08-09 13:52:05 edt FROM: KEN L DCE My 10 year old son was just tested in school and tested for a Learning Disability. I have wondered for years if he had ADD. I am a teacher with my Masters and see all kinds of symptoms in him. We are just in the process of testing with our doctor. My concern is the school's attitude about our concerns. On the one hand, the Occupational Therapist who is testing my son is finding many links to sensory integration issues as well as possible ADD. The school psychologist would not consider any of this and blew us off during our first parent conference where we learned the results. He told us to self-medicate with caffeine and ignore the sensory integration problems completely. Now I am trying to figure out what special education services will best suit his needs. He has done remarkably well over the years to cope and accomodate the LD by keeping his grades up and learning how to "use" the school system. However, he is becoming increasingly isolated from his peers and doesn't want anyone to think he's a freak. We are not sure how to handle all this and are a bit overwhelmed by all the professional advice we seem to be getting that doesn't connect. We haven't even considered what to do about medication. My son remains uncooperative on one side and the schools remain uncooperative on the other. I could use some advice from parents, teachers or just anyone who has been through this and understands the confusion of the beginning steps in the process to meet our son's needs. SUBJECT: Re:ADD/LD Sensory integratio Date: 96-08-09 16:37:34 edt FROM: Ratatat << I could use some advice from parents, teachers or just anyone who has been through this and understands the confusion of the beginning steps in the process to meet our son's needs. >> It seems to me that, yes, you do need some solid information. I believe that before one can even begin to talk about "treatments" or any remedies for what one thinks one sees it is absolutely emperative to get a complete and comprehensive evaluation. From that evaluation you will be able to determine what to do...but only after you know all of what you are dealing with. Sensory integration may, or may not, be the right way to go for you child and some of his struggles, but it may be even begin to touch upon other of his problems. First step: know what you are dealing with by mean of a comprehensive evaluation. By the way, the school psychologist who "blew off" the idea of ADD being treated with sensory integration may have some good information to base that on, but her solution to advise you to "medicate" your child with caffiene was highly unprofessional, and proabably, since she is not a licensed medical practitioner, illegal. Don't listen to that...and if it were my child, I would proabably discount every other thing she said to me just because of that one statement. It just shows how little she really understands about ADD and HER RESPONSIBILITIES to your and your child. You need to get yourself educated about ADD so that you have the knowledge and confidence to confront the misperceptions and attitudes you seem to be facing. Go to the Special Education Library (through Keyword: Education) and download some of the excellent files there to get yourself started. Also, call NICHCY at 1-800-695-0285 for free information about ADD in the schools and the civil rights laws that exist to guarantee that your child is not discriminated against and so that your child is provided with equal access to the education the school offers. Keep us posted. SUBJECT: Re:ADD/LD Sensory Date: 96-08-09 22:25:33 edt FROM: DLM6606 I understand exactly how you feel KEN L DCE. My son is 7 and we have been going through the process you are about to under go. He was dx. at age 3 withADHD and LD. He will enter grade 2 this Sept. First I would get a full medical and psy chological workup from a specialist out side of school. Choose someone who works with children and deals with ADHD and ADD daily. Some of the best Pediatricans do not know much about this disorder or how to treat it. Your school system should have a special ed. coordinator or director,contact them. Tell of your concerns and the discrepancies between the OT and psychologist. They have to be able to work together to formulate an IEP, individual education plan, for your son. Each state has laws and you are entitled to be active in the planning and testing of your child. Ask for the booklet on Special Ed. Parent and Student Rights. Some schools will not make all that your son is entitled to ,be known unless you ask and are informed. Sometimes the private MD. or Psychologist can confer with the Special Ed. dept, and together you can develope what is best for your child. .Your local chapter of CHADD can help with educating you on disabilities or call 305-587-3700 Russell A Barkley has some excellent books as does Larry B. Silver, both MD.s. ADD Warehouse has products for LD and ADHD,etc.1=800-233-9273 Good luck. . SUBJECT: Ratatat response ADDLd Diag Date: 96-08-10 15:01:59 edt FROM: KEN L DCE Thanks for the information. I am really convinced it takes a long and comprehensive process to find out what we need to know. We are scheduled with a specialist in September in these areas. He's the best in the geographic area in which we live. We both have read about a dozen books already on all this during the summer and I (his mom) have tapped into my resources through the school district where I teach. We have a parent advocate ready to go as well. That was a big relief. Right now we are just sorting through everything we are learning in the books and articles about all these issues. Meanwhile I'm planning some at home strategies from what I know about learning from teaching all these years. My son is doing better even as we relax more and talk about all that has happened to him in the last few months. Thanks for so much support! We will let you know what happens down the road. Thanks again SUBJECT: Re:Ratatat response ADDLd Di Date: 96-08-10 17:51:47 edt FROM: Ratatat << We will let you know what happens down the road. >> Yes, please do! We often here so much about the bumps in the road, and then when things get smooth (or bumpier) we don't hear any more. I, for one, would love to hear how things turn out. SUBJECT: Cylert vs Ritilin Date: 96-08-18 00:32:11 edt FROM: Mrfixone Many people give their opinion of Ritilin, how about Cylert? SUBJECT: Re:Cylert vs Ritilin Date: 96-08-18 21:08:12 edt FROM: SusanS29 Cylert is less likely to work than Ritalin. If my kids couldn't take Ritalin I would go to either Dexedrine or Adderall next. Cylert sometimes causes liver problems and is less likely to be effective which bumps it down my personal list. Some people do very well with it but you have to have regular blood tests to check liver function. SUBJECT: Re:Ritilyn Response Date: 96-08-19 18:18:08 edt FROM: Mrfixone My son has been on Cylert since Kindergarden (About 5 yrs now) and gets blood work done on a yearly basis with nothing being effected as of yet. His ped put him on this as his first choice. He has never taken any other meds prior. Are there side effects with Ritilyn? Is anyone else out there on Cylert? I am pleased with it however, I don't have anything to compare his behavior to except no meds at all & that I CANNOT handle! SUBJECT: Re:Ritilyn Response Date: 96-08-19 20:27:35 edt FROM: SusanS29 There are side effects with everything. Often younger children don't do well on Ritalin even when they will do well on it later on, so that might have been the reason. If the Cylert works-well, if it ain't broke, why fix it? Cylert has some real advantages-for instance, it's long acting. Sometimes Ritalin-blink and it's gone. Just the opposite of Cylert in that regard-no "staying power" at all. SUBJECT: Re:Ritilyn Response 2 Date: 96-08-19 21:39:43 edt FROM: Mrfixone So as long as I notice a change for the better when he's on the medication, leave it alone right? It seems like 95% of ADD children & adults are on Ritilin with few that I ever came across on Cylert. Currently he's taking about 56 mg once per day. He started out at 37 mg once per day. About 2 years ago it was increased. I believe it was more of a nonstructured teacher more then anything though. SUBJECT: Re:Ritilyn Response 2 Date: 96-08-20 00:01:31 edt FROM: PeterCB55 While it seems that children in general are less likely to be given Cylert as the first drug to treat attention problems, this is not the case with adults. For a host of reasons (that can be gone into at length later) adult psychiatrists often prescribe Cylert when treating attention symptoms than either Ritalin or Dexadrene. As for children, only a minority of children are given trials of Cylert, although, an increasing number of studies (at least the ones that I have come across) seem to suggest that it is effective, the side effects (with the exception of liver function problems as noted by SusanS29) are relatively few, and in double blind trials, it appears to hold it's own when compared with other stimulants. Nevertheless, liver function problems, although infrequent, are to be taken as a serious potential consequence. PeterCB55 SUBJECT: Re:Ritilyn Response 2 Date: 96-08-20 16:55:24 edt FROM: SusanS29 "While it seems that children in general are less likely to be given Cylert as the first drug to treat attention problems, this is not the case with adults. For a host of reasons (that can be gone into at length later) adult psychiatrists often prescribe Cylert when treating attention symptoms than either Ritalin or Dexadrene. " I hope that trend continues to reverse. I believe that to be a policy based on inadequate supply of information. For myself I wouldn't use an adult MD who insisted on using Cylert first, because I'm aware of the reason and know it to be unfounded in the great majority of cases. SUBJECT: Re: Cylert as 1st choice Date: 96-08-20 19:45:26 edt FROM: Mrfixone SusanS29 - Why do you say "I know the reasons why" for Peters response to Cylert vs Ritilin? SUBJECT: Re: Cylert as 1st choice Date: 96-08-23 21:28:50 edt FROM: SusanS29 A lot of doctors are afraid to prescribe stimulants to adults for fear they will abuse them. Ritalin is actually a *very* poor candidate for abuse. Researchers at Wayne State University did some very interesting research on that topic. People who abuse drugs will often try *anything* once. They try Ritalin but don't go back to it. Ritalin doesn't make you high, and it's no escape from reality-it brings reality closer in. Drug abusers don't like it. In fact people like Hallowell and Ratey have had good success treating people with both ADD and a history of drug abuse with stimulants. But they have a good working relationship with their patients. I'm not a doctor but I'm not an ignoramus about ADD either, and I just don't see Cylert as a first-choice med except in pretty unusual circumstances. SUBJECT: lsamos help Date: 96-08-29 16:48:41 edt FROM: ELP3Magic Yes, this does sound like your child suffers from A.D.D.. I work at LindaMood-Bell Learning Processes and I may be a bit biased but we have the best program in the nation, because we are the only program in the nation with this kind of treatment. call us at 1-800-233-1819 or www.lblp.com SUBJECT: Re: Cylert as a Choice Date: 96-08-31 01:42:25 edt FROM: PeterCB55 Susan, expressed it well. It is an unfortunate, but, hopefully transient situation. Many adult psychiatrists regard the practice of prescribing stimulants to individuals with ADD with unnecessary caution. Many willl lean toward the use of Cylert or alternatively Wellbutrin, or other antidepressants as a preferred first response. Yet, there appears to be a growing body of data supportive of the use of stimulants as a "first line" approach, although, this information has not yet reached a goodly number of our colleagues in the psychiatric community. Fears of abuse "potential", the base rates of comorbid depression (especially among adult females) and a lack of information about the neurochemistry of ADD have probably added to the confusion about the potential value of attempting a trial on one or several stimulants as a first line approach. First, there is no empirical evidence to speak of that suggests that the use of stimulants for the treatment of attention problems, potentiates abuse of substances, even in allegedly "high" risk individuals. For the many young adults that misuse marijuana represents an understandible but misguided effort to self-medicate their attention deficits and low mood; however, stimulants may represent a much safer, more predictable and frankly effective alternative. Second, while there is merit to the notion that "clearing" up comorbid depression with an antidepressant medication is likely to be helpful, many antidepressants (such as the SSRI's, like Prozac for example) do not appear to benefit core attention symptoms. One possible reason for this strategy might be that it represents a "more conservative course"; however, given the relatively short time frame required to assess efficacy of a trial on stimulants one might argue that the more conservative course is best served by first treating the attention symptoms with a trial on stimulants and then addressing those elements of low mood that remain. Third, I am not aware of any fundamental change in brain chemistry that occurs when one transitions from adolescence to "adulthood". In light of the overwhelming evidence that supports the use of stimulants with children and adolescents, as a "first line" approach (except in those cases where other obvious clinical factors are present), it has been somewhat surprising to see physicians treat adults with ADD as if they are somehow "different" and avoid the use of stimulants. Obviously, this can be very frustrating for adults who have spent considerable time and effort to complete a mental health/psychological evaluation only to be told that they must then go through a series of medication trials using drugs with a reduced likelyhood of targeting core attention symptoms. However, I have watched with satisfaction as some individuals with ADD have taken time to become educated about various approaches available to them and then "facilitate" the learning curve of their prescribing physician. PeterCB55 SUBJECT: Re: Cylert as a Choice Date: 96-08-31 09:52:07 edt FROM: SusanS29 "Third, I am not aware of any fundamental change in brain chemistry that occurs when one transitions from adolescence to "adulthood"." In fact, there isn't one. :) (You knew that.) I do understand why people used to *think* that (you probably know that also) -- having to do with the gradual development of the brain, hallmarked by apparents spurts of intellectual development as different skills come strongly "on line" over time. The last area of the brain to come "fully on line"-at puberty-is the area where we reason things out and perform "executive functions" (simply put, planning.) *For those kids* who were biologically destined to be strong in that last area-they can, for the first time, compensate by cognitively modulating their emotional reactions-and by ... planning. Those who know or treat adults with ADD have met adults with ADD who on the surface appear not to have it. Their house is neat (who knew it could be done? -- grin) and their work is up to date (aw c'mon now!) BUT... they pay a terribly high price for it, often pulling "all nighters" to clean before the mother in law arrives, etc. One of the co-authors of YOU MEAN I'M NOT LAZY, STUPID OR CRAZY? was this kind of white-knuckled adult with ADD. Durn it I can't remember which one! I wonder why... (grin). Peter is of course right about the frequency of co-morbid conditions, but any competent diagnostician should be able to follow a logical course of action to determine that. In my own opinion (and remember I'm not a clinician) -- it's even *more* important to treat the ADD when there's a co-morbid condition. There are a lot of cases of seemingly intractible alcoholism where the person *finally* gets and stays dry-after the ADD is also treated. If a person has both ADD and depression, failure is virtually guaranteed unless both are addressed. That doesn't mean both are addressed on the first day of treatment, but ignoring the ADD just about dooms the person to remaining depressed (no matte what the cause of the depression). Peter if I'm wrong jump in but this is something I've paid close attention to. SUBJECT: Re: Comorbid Conditions Date: 96-08-31 17:55:26 edt FROM: PeterCB55 Susan, Your comments on comorbid conditions were interesting, and disturbing. Interesting in the sense that for many individuals with comorbid problems (e.g., ADD and depression) your explanation helps makes sense of why "monotherapy" leaves a person feeling confused, frustrated, and only a little better off. Indeed many adults and a goodly number of adolescents with ADD plus, will speak of feelings of dissapointment, betrayal and cyncism regarding the mental health profession. We place so much on the notion that "if you seek help" then "you will receive it". Unfortunately, (and this is the disurbing part) as many as a third of those with ADD have comorbid disorders that have been undiagnosed or simply underdiagnosed. Obviously a lot remains to be learned here on all sides. Thinking back over things, I can recall many combinations of difficulties that children and adolescents have presented that were just plain hard to recognize and hard to treat. Some of the more troublesome pairings I have come across involve ADD in combination with: language processing disorders, mild depression, chronic but mild anxiety, being a female, working with children with neurologic disorders (e.g., developmental disorders, seizures, tumors, and CP) where the obvious problems effectively mask the presence of attention problems, and last but not least, adolescents with concurrant drug use problems. This list could go on, but I thought I might ask what other combinations list readers have found that have spun their heads around. PeterCB55 SUBJECT: re:cormorbid conditions Date: 96-08-31 22:06:59 edt FROM: Writes4pay <> Susan.....this is precisely what frustrates me. To have a kid with 150 IQ that has ADD....no problem right? Some Ritilan.....and an organization plan and group counseling. But in our case Bobby also has Tourettes and OCD....which means no stimulants according to the doc (tho books say sometimes it helps tics and sometimes it hurts them). It is so frustrating to stand at a door and not be able to get it open. They want Bobby to take prozac...he doesn't want to and from eveerything I read it may help tics but it won't do diddly for ADD. Candy (can you tell I am frustrated? :) SUBJECT: re:peter's question Date: 96-08-31 22:14:54 edt FROM: Writes4pay << I thought I might ask what other combinations list readers have found that have spun their heads around. >. How about ADD, Tourette's OCD and a 150 IQ....oh yeah and a math LD? So let's see....the IQ should mean success in school, oops except for the ADD. That's ok....we will treat it with a stimulant and that should get things on track.....oh @%#$# now they find tourettes......and OCD? Well maybe some Prozac will help the OCD, we have never even discussed what to do about the tourettes, and oh by the way.....the ADD is the biggest problem he has but there's not a darn thing we can do about it sorry. Oh gosh what ever can we do about a math LD.....with ADD it will be hard enough to learn math, tutoring for an LD with a two second attention span will be next to impossible, sorry. Frustrating.....you better believe it. Candy SUBJECT: Re: Comorbid Conditions Date: 96-09-01 17:06:47 edt FROM: SusanS29 Well, we agree again (surprise, surprise-smile). The very real possibility of co-morbid conditions is one *very good* reason to not rely solely on medication prescribed from someone not trained to be actively alert to this possibility. What a terrible sentence but I didn't want to single out any one specialty. SUBJECT: Re:re:peter's question Date: 96-09-01 17:10:03 edt FROM: SusanS29 Candy, I do *not* want to second-guess you. You have enough going on without that! But I'll just throw out one possibility.I think your son needs a doctor who is a *true* expert in neurochemical/neurobiological conditions. Even if your son's doctor falls into that category maybe a second opinion would be worth it. It might be worth a plane trip even across the country. Because some doctors do find that Ritalin will help with tics, and more than Prozac has been used for OCD. I don't want to try to prescribe, and probably your doctor is quite competent, but some situations just cry out for a second opinion. If you haven't gotten one yet, I think this might be it. :) SUBJECT: re: 2nd opinion Date: 96-09-01 19:09:24 edt FROM: Writes4pay <> Susan...I agree :-) #1- the ocd is very minor and probably the least of his problems #2- the tourettes is a little more severe, however I have read Ritilan sometimes helps with tics, besides if it makes them worse he stops the Ritilan where is the hard part right? #3- The ADD is causing the biggest problem. To me it should not matter if Tourettes is causing ADD, or if Tourettes is a comorbid condition WITH the ADD......the ADD is the most disruptive thing going on so let's treat that first and see how the treatment affects the Tourettes and OCD right? However......no one seems to listen to that possibility. Besides the fact that Bobby is wiling to try Ritilan but thus far has a real phobia about Prozac.. This Wed. we have another appt with the shrink and I am going to have him explain to me EXACTLY why we can't try it the way I want to first....and if that fails talk about his way. Going across the country is not possible for a single mom financially....but we are 20 minutes from Vanderbilt (reputed for cutting edge ADD stuff) so we may go there if not satisfied Wed. Wish us luck! Candy SUBJECT: Re:re:2nd opinion Date: 96-09-02 00:35:03 edt FROM: SusanS29 "the tourettes is a little more severe, however I have read Ritilan sometimes helps with tics, besides if it makes them worse he stops the Ritilan where is the hard part right?" Well it's not hard for you: try the Ritalin, and if the tics increase, stop it-right? However, doctors have been sued for far less, specifically over Ritalin. There are such *absolutely ludicrous* rumors (completely untrue but quite believeable to juries unfortunately). Doctors are running scared. That's why I say get a second opinion, someone who has managed many such cases (the combination of ADD and Tourette's is pretty common). Have someone who is confident about his or her knowledge about this combination take a look at him. SUBJECT: Re:re:2nd opinion Date: 96-09-02 00:35:52 edt FROM: SusanS29 "Going across the country is not possible for a single mom financially....but we are 20 minutes from Vanderbilt (reputed for cutting edge ADD stuff) so we may go there if not satisfied Wed." Oh, my. YES. Call Dr. Robert Hunt at Vanderbilt. He will know who is good in your area. SUBJECT: Re:re:2nd opinion Date: 96-09-02 01:09:26 edt FROM: MOMGAG Candy, We meet again (I responded to your posts on the TS bb.) My son Gabriel, also 10, has been on Ritalin for about 3 years. He started out on Clonodine. He was diagnosed with TS and OCD about a year ago. The first dr we went to had him on those 2 meds; I was very concerned that he was so lethargic, almost like a zombie. I thought he was over-medicated, but when I expressed my concerns, this dr actually wanted to increase the meds! I found another dr, a child psychiatrist, who took him off clonodine, lowered the dose of Ritalin (actually I had done this on my own before we saw the psych), and added a low dose of Prozac. Of all his problems, the OCD interferes the most with his life. Gabriel has done much better on the Prozac and Ritalin. Finding a doctor you can work with is so important. SUBJECT: re:re:second opinion Date: 96-09-02 15:12:13 edt FROM: Writes4pay <> This is what I don't understand. Why hasn't anyone suggested to us a combination of Prozac/Ritilan? No one disputes the ADD diagnosis, and the OCD/Tourettes is sef-evident. I have low thyroid AND a rapid heart rate. Thyroid meds tend to speed up a heart rate, a potential problem for someone like me who already has a resting heart rate of 105 beats and some past SVT attacks. What they did was put me on thyroid in ADDITION to a heart med to slow my heart rate and counter act the thyroid med side affect. To me it seems so simple..... How does your son's OCD and Tourettes manifest itself? And does the Ritilan help with the ADD even when taking Prozac? Candy SUBJECT: Re:Ritalin & Prozac Date: 96-09-02 15:57:00 edt FROM: MOMGAG Gabriel's OCD interferes most with his life. He is obsessive about germs---washes hands excessively, washes all dishes before he uses them (right out of the dishwasher), uses cereal boxes to block off other family members' germs from his food, erases his work until he has a hole in his paper, throws schoolwork away because it isn't perfect, talks obsessively about certain subjects, picks at sores, etc. He's better on the Prozac, but still has many of these behaviors. When we started the Prozac, the dr and I decided to try him off the Ritalin. He'd been on it so long, I thought it would be worthwhile to see how he was without it, especially with the Prozac. It didn't take more than a couple of days to realize that he definitely needed the Ritalin! He was wild! His TS at this point is very mild. He generally has only a couple of mild tics at any time, mainly head jerking, joint popping, sticking tongue out, and his explosive speech patterns. He has had a few periods where the tics were stronger and more numerous. I don't see that the tics are any worse with the Ritalin. Hope this helps. SUBJECT: re:ritilan/prozac Date: 96-09-02 22:39:52 edt FROM: Writes4pay <<, washes all dishes before he uses them (right out of the dishwasher)erases his work until he has a hole in his paper, throws schoolwork away because it isn't perfect, talks obsessively about certain subjects>> Well duh! Bobby does these exact same things and I never even attributed it to OCD........I just thought they were "Bobbyisms"....talk about being to close to be objective eh? (grin). He also refuses, and I mean refuses to use a public restroom if it will involve sitting down (must be the germ thing?) I will wash something with hot soapy water in front of him (like a cup) and he will go rewash it before using it. He erases til it drives the teacher crazy..... Bobby's Tourettes started out slow but is building over time. He used to blink excessively, then had a weird mouth grimace (again I thought these were Bobbyisms)....now he he has this throat squeak he does especially at night while watching tv. It's a squeak EVERY half second for hours....loud enough to be heard in another room. He also smells EVERYTHING (which is also a tic). Currently these two tics fall under complex tics. He also mimicks things on tv and things he just heard someone say and does it in a evil type voice. Like if I say "Go feed the dog," he heads for the chore but says "Go feed the dog" in a voice reminicent of the wicked witch in the Oz movie years ago....I got a book called Children with Tourette Syndrome. It is WONDERFUL. It talks about symptoms, educational and family needs, what to expect down the road etc etc. It says that caprolia (cussing tic) usually does not occur until the end of the syndrome (teen years) and 30 percent of tourette kids develop it.....scary thought. I am going to insist on a Ritilan/Prozac combo med trial ....wish us luck. Candy SUBJECT: Re:re:ritilan/prozac Date: 96-09-03 00:26:13 edt FROM: MOMGAG Good luck---hope the dr will listen to what you have to say and work with you! Galen SUBJECT: Another good TS book Date: 96-09-03 00:48:33 edt FROM: MOMGAG I forgot to mention in my previous post that there are a couple of good books about TS you might like to check out. One is "Living with Tourette Syndrome" by Elaine Shimberg. I found it at one of the large book chains. The other is "Teaching the Tiger" which I ordered off the internet from Hope Press. SUBJECT: Re:re:2nd opinion Date: 96-09-03 08:30:27 edt FROM: SusanS29 "I thought he was over-medicated, but when I expressed my concerns, this dr actually wanted to increase the meds! " In fairness to the doctor, both doses too low *and* too high of Ritalin can have this effect. Since most doctors start off cautiously with low doses, it can be a reasonable approach. ;) SUBJECT: Re:re:re:second opinion Date: 96-09-03 08:31:05 edt FROM: SusanS29 "This is what I don't understand. Why hasn't anyone suggested to us a combination of Prozac/Ritilan?" In some individuals, Prozac aggravates the ADD. SUBJECT: re:2nd opinion Susan Date: 96-09-03 19:20:02 edt FROM: Writes4pay <> Well that's scary since the only thing they *want* him on currently is Prozac. I don't know why they would want him on a drug that aggravated ADD in some people but not add the Ritilan to try and help the ADD. Candy (on the never ending circle) SUBJECT: Re:re:2nd opinion Susan Date: 96-09-03 23:43:51 edt FROM: SusanS29 Ask *why,* and insist on specific and detailed answers. MEDLINE is available here on AOL (keyword MEDLINE which makes it easy- smile). You can research this stuff there if you want. SUBJECT: re:2nd opinion Date: 96-09-04 23:10:30 edt FROM: Writes4pay Susan...with a 286 DOS system I can't get much farther than this board....I don't have enough memory says the ugly little window that pops up.....groan! Well. Today Bobby had a bad day. First his teacher (who is usually great) caught him doing something he was not supposed to (impulse control again(G) While correcting Bobby he said something to the affect "Your mom is not going to be able to bail you out in MY class Bobby, this year will NOT be like last year! Well Bobby was hurt, and confused. He came home saying that teachers are nothing but gossips. Bobby has had 11 teachers in his life. I had a problem with one...last year. They fired her at year's end so it was not my imagination. However this year's teacher informed Bobby today that he and last year's teacher are close personal friends...and they "talk". Then when I went to pick him up for a dr. appt. the teacher came out in to the hall proudly displaying an assignment Bobby did incorrectly. "I gottcha this time Bobby" he said, "I caught you this time". Then he showed me how Bobby had done the entire assigment wrong. He carefully explained to me (in detail) how he had gone over the 5 steps to complete it with the class before cutting them loose. He insists Bobby was "mocking the assignment" by doing it wrong. Bobby insists he tried his best and really thought he understood what he was supposed to do. Then the teacher said to Bobby while pointing at me.."It won't be like last year Bobby, your mom and I are on the same wavelength." Bobby still insisted he misunderstood the directions and asked if he could do it over tonight. Teacher said NO you'll get a big goose-egg (read O) today that's how it is in my class. Well we went to the doc and I said "You have GOT to give him something for this ADD or he will never survive another year.....they sent us to the med shrink and had a conference call.....Friday he starts Tenax....wish us luck! Candy SUBJECT: Re:re:2nd opinion Date: 96-09-05 07:18:51 edt FROM: Ratatat Dear Writes, What you just posted here is very disturbing. This teacher is one sick puppy. Public humiliation of a child is the height of abuse and must not be tolerated. It is inappropriate as well for a teacher to make the threats to a CHILD the way this teacher did. And, the teacher's relationship with another teacher is not relavant to this years teaching of the students. If I were you, and this were my child, I would be in the principals office first thing in the morning. If you can't verbalize all that took place because of being upset, just print our your message and ask the principal to read it. THEN, ask the principal to change your child out of that class immediately. I just can't see where this year will offer your child any appropriate education with a teacher who is so willing to be publically abusive. Any good teacher worth their salt understands the importance of praising in public and reprimanding in private. I am just in shock that a teacher would do such a character assassination on a child in public and with the parent. SUBJECT: Re:re:2nd opinion Date: 96-09-05 07:20:10 edt FROM: Ratatat <<.Friday he starts Tenax....wish us luck!>> Why Tenex? This is not a first-tier medication for ADHD. Me thinks that maybe you still need that second opinion from Vanderbilt. SUBJECT: re:why Tenex Date: 96-09-05 22:40:52 edt FROM: Writes4pay <> It's because he also has Tourette Syndrome and OCD. When we went to the first shrink I asked him why Bobby can't be on Ritilan AND something for Tourettes. He said he wanted Bobby to take Klonodine (sp). Then he sent us off to the meds shrink and had a conference call with her while we were en-route. When we got there she said that she does not want Bobby on Klonodine (two potent for the first line of defense)....and does not want him on Ritilan (because of the Tourettes) but would like him to try Tenex. She said it is not as "effective" as Ritilan in most cases for ADD. But is a solid choice for Bobby and his added playmates...(tourettes and OCD). THen she sent us to the hospital for an EKG....with instructions. "Do not under any circumstances start this prescription until you call me Friday and I tell you too....after I see the EKG report. Have his teacher fill out this rating scale this week BEFORE he begins meds, then have him fill one out each week for four weeks and bring them with you to next appt. WHEN and only WHEN I tell you to start prescription, give him half a pill twice a day for 5 days then increase to a whole pill twice a day until you come back next month. She seems to know what she is doing....and we are frankly THRILLED to have a prescription in our possession after two months of 3X a week appts. etc etc Candy SUBJECT: re:sick pup teacher Date: 96-09-05 22:55:04 edt FROM: Writes4pay <> This is NOTHING compared to what Bobby went through last year.....His self esteem took a GIANT step backwards after last year. Actually his teacher has a reputation for being the best in town.. and until this made real efforts to rebuild Bobby, giving him special classroom jobs, calling on him and making a big deal when he was focused and on task etc etc ....though he also has a rep for refusing to accomodate kids with ADD etc. I think he thought long and hard about what happened because today he asked Bobby if he is on any meds, (Bobby said nothing but injections...he takes growth hormones)...the teacher told him he was sorry for the conversation they had had....he said . Is there anything I can do to make this year comfortable for you?" And even after yesterday Bobby LOVES this teacher. He told Bobby today..."You are a good kid Bobby...a bright kid, and I want to help you do better" Tonight was parent teacher night where teachers tell you what to expect. He informed the class of parents that he is VERY sensitive to the LD kids in the world cause his son is LD. He also said he watches them struggle and it hurts him. He looked right at me when he said it....and for the first time he smiled instead of turn away any time I try to even say hello. I think maybe he read Bobby's entire school record after yesterday's problem and maybe sees the same pattern he saw in his son (who he said was not DX until 6th grade). As I was leaving I said to him "We need a conference and it can't wait til October.." He was so warm and understanding...he said "Call me tommorrow and we will set up a time to meet" I think he is making a real effort to start over and that's all I ask.... Well besides a set of books in my house....extra test time,.......the right to make up missed assigments with points off instead of zeros....etc etc etc (grin) I am calling an MTeam and taking Bobby's professional team with me.....hopefully this year will be the year that turns it around. Candy SUBJECT: Re:re:why Tenex Date: 96-09-06 07:26:27 edt FROM: Ratatat <> Candy, I do agree with the precautions beine a good omen for a careful doctor who is setting up a context so that your child's response to the medication can be known. This is the piece that is so often dropped by doctors who are prescribing medications for ADHD, OCD, etc.... FYI, so that you have some extra info, there is a newer medication that has been around for about two years which was "designed" specifically for OCD. It is in the SSRI family, called Luvox. My husband has been taking this with good results. Also, there is now some evidence that Ritalin does not always aggravate TS. It's very individual, but I understand that some children have no negative effects on their TS from the Ritalin. Your child's "traveling partners" of ADHD, TS and OCD are a full load. I know with my husband they did not start the Ritalin until he'd been on the Luvox for a good six months and had those symptoms had become more stable. You sound like you have a careful doc you are working with, which is reassuring. Do you know about the "tome" by David Comings, Tourette Syndrome and Human Behavior? Basically he covers all disorders that are and might be effected by the dopamine neurotransmitter (among others) and discusses the possibility of co-morbidity of TS with just about every thing you can think of. It's a heavy duty medical textbook, but not invaluable to have or review. SUBJECT: Re:re:sick pup teacher Date: 96-09-06 07:30:08 edt FROM: Ratatat <> Those are all excellent accommodations to request on your son's IEP. You approach of having your son's professional team join you at the meeting is extremely wise. They can speak to the professional issue as they are specific to you son better than anyone. I will hope that this teacher does do a complete turn around. I would hate to think that he might ever "lose it" and speak to you child with those words ever again. It truly consistutes child abuse. I am glad things seem to be changing and he's seems to be acknowledging your son's special needs and abilities. SUBJECT: Re:NEW FOLDER Date: 96-09-09 15:41:53 edt FROM: Sing440209 Could you please give me advice on how to appeal these insurance companies to cover the testing necessary for properly diagnosing ADD/ADHD?Are ther any laws that require insurance companies to cover the diagnosis and/or treatment of this disorder? My son is seeing the psychologist and has had the psychoeducational testing which is pointing to ADD, inattentive along with some specific learning disabilities.Now, we must rule out other physical problems that may mimic ADD symptoms, through a neurological exam and blood tests before considering the medication issue. Getting the insurance company to pay is a pain.Once our son is cleared of any other physical disorders, we will then be taking him to the psychiatrist to discuss the necessity of medication.In the meantime the medical bills- and the anxiety- is mounting. SUBJECT: Re:ADD: a teacher's perspect Date: 96-09-09 21:47:15 edt FROM: ANNETROY I have taught special education for 22 years. I have seen many children with ADD and many without ADD. There is a difference! I have attended several conferences on ADD. No one knows everything about it. Children with ADD can be very different from one another. The brain is responsible for our ability to attend to incoming information. It also allows us to screen all the information that comes in simultaneously. It helps us decide which of that incoming information is important. Can I listen to someone talking when a car goes by outside? Your child struggles to attend. It takes all the effort he/she can muster to concentrate on what he knows he should. Sometimes, your child becomes so frustrated because it is just so hard. Guess what? We know enough about the brain to know what chemicals help the person attend. Medication does not make children into robots. Your mother's high blood pressure medication does not make her a zombie? The insulin your neighbor takes does not change his personallity, except to make him happier because his life is easier. Your child on ritalin will not be a different child. He will just be less frustrated, happier, and he will feel "normal" like all of the other kids. He may have a dry mouth or not be hungry as much, but he will like the fact that he is not missing out on all that goes on in his day. He will be able to have friends because he will not be missing parts of conversations. He will be able to catch the sublties of social interactions. He will get along much better with his peers. Medication for ADD is not a life long commitment. Try it for a month! The dosage will need to be adjusted. Try it for 4 months. You have nothing to lose and everything to gain. Most children who benefit from ritalin (or other similar drugs) will report the effects as positive. If it is not effective, you can stop at any time. Ask an adult who is taking ritalin. I teach children ages 3-5. It makes a trememdous difference in some children. It can be the difference between the diagnosis of behavior disordered and non-handicapped. The medication does not cure the child, but often, if it is given early enough, it prevents frustrated parents and children with poor self-esteem ("Why can't you behave?"). SUBJECT: Re:NEW FOLDER Date: 96-09-11 09:20:49 edt FROM: Ratatat <<.In the meantime the medical bills- and the anxiety- is mounting. >> Is there some reason why your local public school is not paying for some or all of the educational assessment evaluations? SUBJECT: mainstreaming ADHD kdg Date: 96-09-15 12:22:01 edt FROM: HABES4506 hi, I am a special ed. teacher with a self-contained classroom. I have a kdg. student who is with me all morning, and in a regular kdg. in the afternoon. My problem is that the child is highly distractable, and has difficulty staying seated for large group activities. I am looking for suggestions for the gen. ed. teacher. I am unable to be in the kdg. room at all, and need some fresh ideas to share with the willing teacher. Help! SUBJECT: ADHD Diagnosis Date: 96-09-20 20:35:00 edt FROM: METAL DECK A neurologist recently diagnosed my son with ADHD. He met with my son once and reviewed his medical and educational records. He did not perform any testing. He also sent his report directly to the school without my knowledge or release. Today I received a report from the psychologist who performed a complete neuropsych eval. He had the Connors Rating Scales and Achenbach Behavior Checklists completed by myself and the teachers at school. The psychologist states "While some attention problems have been noted, none were observed during this assessment and it appears more likely that any difficulties he has concentrating or "staring" may be more related to some of the dysthymic underpinnings that seem to exist here than they are to any type of basic attentional defecit." What does dysthymic mean ? As far as the ADHD diagnosis goes, he has exhibited many behaviors of ADD and he may be fidgity but he is not hyperactive. The school wants to know where I stand on the ADHD Diagnosis. At this point I am at a loss as to what to tell them. I will be calling the psychologist on Monday and wanted to get any input beforehand. Thanks, Cathy SUBJECT: Re:ADHD Diagnosis Date: 96-09-21 09:19:21 edt FROM: PeterCB55 Dysthymia refers to a group of symptoms that often includes low mood, feelings of hopelessness/helplessness/discouragement, a lack of energy, low self-esteem, poor concentration or difficulty making decisions, difficulty falling asleep. Note the overlap between some of these symptoms (e.g., poor concentration) and those usually included when talking about children with ADD. Sometimes a combination of these symptoms is present for an extended period of time and is of sufficient severity as to interfere with everyday activities like schooling and social relations. Some clinicians consider this to represent a form of a low-grade depressive disorder. PeterCB55 SUBJECT: RE;NEW FOLDRER/RATATATAT Date: 96-09-23 15:23:02 edt FROM: Sing440209 I have chosen to have the outside evaluation done at my own expense because the school system would not do it .I was verbally told by my son's teacher that the child study team did not feel a complete evaluation for ESE services was warranted because at the time my son was "not struggling" academically.This was two years ago. In the meantime, he has really declined in his performance, and needed the eval done right away-not six months from now-while his self-esteem is still resucitatable.So, I decided to get it done myself. SUBJECT: Re:ADD1138 Date: 96-09-28 07:18:25 edt FROM: DunnStar I have been a Sp.Ed. teacher for 15 years and have seen the effects of both behavior mod. and medication. They go hand in hand. The kids who truly need medication, really need it. The behavior mod. just helps them be even more sucessful and gets their self-esteem back up. I have also witnessed first hand how the kids using both have sometimes been able to internalize new ways to compensate for their learning differences more rapidly. It is more likely (in my opinion) that your child will learn to do without medication if given the opportunity to be extremely sucessful. This means letting him go on the meds and using behavior mod. also. It will force him to do well and then you may be better able to see what it is he really needs. Good Luck! BF SUBJECT: LD Spec Ed Teacher Date: 96-09-29 11:08:45 edt FROM: BrianVG I am a teacher who is currently enrolled in a special ed graduate progam. I want to help your children and can only do that by understanding your concerns and problems. If you have any information or know of any articles and studies regarding ADD and medications or behavior modification please e-mail me at BRIANVG. Reading your messages has helped me to understand your concerns and frustrations. Hopefully I can be one of many teachers who can truly help your children in the regular classroom. Remember, we can only do what the district helps us do, inclusion was meant to be implemented with major in class support, watch EDUCATING PETER, that is how it is supposed to be, but unfortunately teachers are not supported this way. With the increased emphasis on higher test scores, how can a teacher teach the information to reg ed kids and then spend another 1/2 hour with the spec ed kid with out losing the reg ed kids? We need help also, more support for teachers which would mean more school empoyees and higher taxes. HElp us and we will help you! SUBJECT: Re:LD Spec Ed Teacher Date: 96-09-29 12:47:09 edt FROM: SusanS29 I'll send this to you privately, also. ;) This isn't from the PDR. Information in the PDR comes from the drug manufacturer (in Ritalin's case, Ciba-Geigy). They aren't about to send in research based on the generic form of Ritalin (methylphenidate) as their goal is to sell the non-generic form. However, researcher almost always use the generic form. This is one more reason that suggestions that the researchers and the drug companies are somehow consipiring together is silly. Here's what I found, quite easily, on the Internet just now. I went to the Internet and quite easily found this study summary. I'm including selected sections that correspond to misinformation recently posted in this folder. The formatting is mine to make it a little easier to read. Other than that, no content changes were made. Stimulants - Efficacy Conclusions (Gittelman-Klein 1987, Green 1992, Greenhill 1992) (note: MPD stands for "methylphenidate," the generic form of Ritalin. The generic form is almost always used in research-another reason Ciba Geigy is not about to quote these studies when they send information for listing in PDR-and all information in the PDR comes from the *drug company.*) Long-term use: There do not appear to be any adverse long term behavioral effects resulting from chronic stimulant use. A group of adults who had taken MPD for 3 or more years as children were found to have fewer psychiatric problems fewer car accidents more independent lives more were attending school a more positive view of their childhood and were less aggressive than a similar group of formerly untreated hyperactive adults (Hechtman et al 1984). * There are a total of 6 double-blind placebo controlled ADHD efficacy, studies 6 involving methylphenidate, 3 dextroamphetamine, 3 caffeine, and 1 pemoline. A total of 152 patients were studied. Methylphenidate,dextroamphetamine, and pemoline appear equally effective in treating ADHD. The 3 psychostimulants were found to more effective than caffeine and placebo. A summary of the studies is presented in Table 1. *The psychostimulants are the first line drugs in the treatment of ADHD. *The stimulants MPD, DAS, and pemoline are equivalent in ADHD efficacy. *Stimulants normalize hyperactivity. Classroom behaviors such as noncompliance and interference are normalized by the drugs. However, not all behaviors are normalized by the stimulants. *Stimulants have a positive impact on the social behavior of hyperactive children. Stimulants improve the adult responses toward the children. This is clinically significant since teachers' behavior toward the medicated hyperactive child becomes indistinguishable from their behavior toward normal students. *The opinion that stimulants do not have any effect on classroom learning and performance is debatable. The only adequately controlled study that investigated this issue found that methylphenidate 0.3 mg/kg/d improved performance on arithmetical and language tasks (Douglas et al 1986). *Aggressive behavior including stealing and vandalism is improved by standard doses of MPD 0.3-0.6 mg/kg. *Stimulants decrease friction between sibs and peers. and improve maternal child-interactions. SUBJECT: help for nonreader Date: 96-10-03 00:11:03 edt FROM: Mmccddss i have an extremely intelligent (IQ approx. 148) young ADHD 3rd grade boy who can hardly read beyond the mid 1st grade level. i have attempted direct instruction, A.D.D. program by lindamood, orton-gillingham technques and strategies, intensive phonics and nothing really works consistently. i feel he needs more of a whole word approach, but i have not taught reading in this way for a long time. i sure could use some ideas. please send me anything you feel would be successful. thank you in earnest. SUBJECT: Re:help for nonreader Date: 96-10-03 20:15:56 edt FROM: SusanS29 Systematic sight word instruction is what I would do. That will give him a framework later for phonics. I mean *really* over-learning the words. LOTS of review. It will start out slowly, but we can actually develop the ability gradually to learn words by sight. Once he has a sight vocabulary of 200 words or so that should make any other approach more effective. SUBJECT: FOLDER TO BE ARCHIVED Date: 96-10-04 11:34:44 edt FROM: Ratatat ********************************************* N O T I C E ************************************************ This folder has almost reached it's capacity. It is due to be ARHIVED. The entire contents of this message folder will be loaded into the Special Education library. In order to do this, the entire folder must be "deleted" temporarily. The most recent posts will be reposted in a "new" ADD/ADHD Diagnosis/Treatment folder. Ratatat, Assistant Host/Librarian for Special Education