Archive of the Special Education Message Board Folder: Rare Disorders December 3, 1994 - November 23, 1997 FILE NAME: raredis1.txt 444 messages - 86 Pages SUBJECT: Landau - Klefner Date: 94-12-03 19:54:57 EST From: Jamb04742 I have a student with Landau Klefner syndrome. Am looking for any information or resources on possible teaching strategies, support groups, diets, treatments, cures(?). SUBJECT: Re:Tuberous Sclerosis Date: 94-12-04 21:50:43 EST From: WMccorm348 I have a student with Ts. TS has an 800 number. Check with the 800 number directory. I received information for teachers and parents and it was very helpful. SUBJECT: Re:Hyperlexia Date: 94-12-20 21:57:49 EST From: Starbase4 My son Jason was diagnosed with Hyperlexia 2 years ago. I am now a contact person for The American Hyperlexia Association. If you need information please contact me. Starbase4 SUBJECT: Re:Hyperlexia Date: 94-12-31 10:43:32 EST From: MKptr What is hyperlexia? (I consult w/ kids througout my district & this could be helpful in determing programming.) SUBJECT: Re:Hyperlexia Date: 95-01-02 15:44:26 EST From: Starbase4 Please refer to the PDD and autism post from a week ago. I talk about symptoms and signs of hyperlexia on that board. Starbase4 SUBJECT: Re:TS-WMccorum348 Date: 95-01-07 22:51:28 EST From: ADOPTN I saw your post today. Would you tell me about your student with TS? How old is she/he? What handicapping conditions? Is your class self-contained or an inclusion model? What can the child do? Our son is only 21 months old, and is developmentally on target. SUBJECT: Amniotic Band Syndrome Date: 95-01-07 22:53:25 EST From: ADOPTN Anyone have a child with Amniotic Band Syndrome, or who has it themselves? We have a 6 1/2 year old daughter with that syndrome, and can't seem to find anyone who know anything about it, from a personal point of view. SUBJECT: Re:Agenesis of Corpus Callosum Date: 95-01-10 00:16:59 EST From: SueOTKAM Anyone, particularly OT/PT, have experience w/ kids with full or partial agenesis of the Corpus Callosum? This is the part of the brain that connects the two sides. I'd like to find out what the long term future holds for some of the more severely involved kids. Thanks. SUEOTKAM SUBJECT: asberger's syndrome Date: 95-01-12 12:45:38 EST From: Bodwitz My friend's 13 yr. old son has been diagnosed with Asberger's and we need more info to understand what this is...He lives in the Hartford Ct. area and is doing poorly in the regular class-room. Any suggestions re: schools and after-school programs? Thanks SUBJECT: RE:Amniotic Banding Sydrome Date: 95-01-12 20:00:20 EST From: JKStellmon I thought I might be able to give you some insight into this disorder. I am a pediatric nurse who has worked with 2 children with this and my nephew is possible a victim of this disorder. This is where bands of tissue form inside the amniotic sac during fetal development. These bands get in the way of normal fetal development. It can cause minor constrictions around distal limbs or can cause amputation and gross anomalies in development. One child I worked with had a band around partof his head. This caused a very large part of his head to bulge out at the side and pull his eye to one side. It of course, caused brain damage. My nephew had little knots of flesh at the ends of most of his toes. These were removed and although he doesn't have any toenails on those toes, his feet are perfectly functioning. I really don't have much information, and it is very rare. But I hope I've helped you a bit. You may want to contact a major children's hospital such as Primary Children's Medical Center or something like that. SUBJECT: Re:TS-WMccorum348 Date: 95-01-17 21:34:50 EST From: WMccorm348 Sorry I just checked in and saw your message. We have an inclusion model. The student is in second grade and reading in Distar I a beginning reading program. He is not on grade level, but every student is different so I'm sure you cannot draw a comparison with your child. He is a great kid and working hard- in class all but 60 min a day. SUBJECT: Rubinstein-Taybi Syndrome Date: 95-01-26 11:34:40 EST From: NickW278 Our three-year-old son Tommy has RTS, and our family would be interested in connecting on-line with other parents and/or siblings of children with Rubinstein-Taybi. NickW278 SUBJECT: Peter's Plus Syndrome Date: 95-01-27 19:44:26 EST From: Cbhome I'm looking for information on Peter's Plus Syndrome. Doris SUBJECT: Re:asberger's syndrome Date: 95-01-29 14:58:07 EST From: Hckygolee Some of the best work on asperger's is being done at Yale in new haven by dr. ami klin. They work at the child study center. hckygolee@aol.com SUBJECT: Re:Agenesis of Corpus Callosum Date: 95-02-07 22:35:38 EST From: RStefan699 We have a son with partial agenesis of Corpus Callosum and over the last 5 years have realized how this agenesis has affected his motor coordination and his speech and language processing. I would be happy to share further details. Please let us know. Regards, Sue SUBJECT: Joubert Syndrome Date: 95-02-11 13:12:33 EST From: JoubertPIT I am the president of a newly formed parent group nation wide, for children with a raredisorder called Joubert Syndrome. It is a recessive gene disorder that causes, absence of the cerebellar vermis , sometimes retardation, always eye problems, motor and fine motor problems, and speech problems. and apraxia. I have 2 children with this. this disorder can sometimes go easily misdiagnosed. The children at usually have a very fast rapid breathing that resembles the panting of a dog, and they usually have sleep apnea. anyone that is interested in or has a child that fits this , I would very much like to hear from. sincerely, Cheryl Duquette, Pres. SUBJECT: Angelman Syndrome Date: 95-02-26 15:22:32 EST From: RRUTS I'm looking for any families who would like to correspond about our children. My daughter is 4 1/2 y.o. I was a teacher of severely and profoundly Multiply-Impaired children for 8 yrs. prior to having my children. We also have a 2 1/2 y.o. son. I have a lot of ideas to share as well as continued dilemmas to solve! I have been very lazy about getting these all on paper to share through our organizations newsletter but that is in my plans.... We have and are continuing to research and use a variety of techniques and programs that are available. I am very interested in the Day One program re: A Down's Syndrome mother using a combination of supplements and a drug called piracetam. I know one Angelman family currently using this and I know many more have contacted this woman re: her situation. It's like a Lorenzo's Oil story. Anyway, I'd like to brainstorm and keep current. Thanks. SUBJECT: Cornelia de Lange Syndrome Date: 95-03-06 14:33:14 EST From: Bsktcas Hello! I am an EI teacher in a desparate search for info on Cornelia de Lange syndrome. I treat a little girl who might possibly have this. Any pointers, suggestions, or info please post a message or E-mail me directly. Thanks! bsktcas aka Alison SUBJECT: Re:Landau - Klefner Date: 95-03-10 11:47:27 EST From: Carrob1 I desparately need to know more about this as well. Please e-mail direct. Thanks! SUBJECT: Cerabellar Ataxia/OMS Date: 95-03-18 10:42:35 EST From: WRagan My 6 year old son has Opsoclonus Myoclonus Syndrome caused by a neuroblastoma when he was 1 year old. Ataxia and dysarthric speech are his 2 major problems. I'm looking for other parents to network with that have children with the same or similar illness. If anyone knows of a message board on the internet that I could stick this on I'd appreciate it! I'm having a terrible time locating anything that has to do w/ Special Ed or Medicine on that thing! Thanks, Wendy SUBJECT: Re: Cornelia de lange syndrome Date: 95-03-19 18:02:16 EST From: Vnagy Good organization for information and support on Cornelia de Lange syndrome. Cornelia de Lange Syndrome Foundation, Inc 60 Dyer Avenue Collinsville, CT 06022 1-800-223-8355 They publish newsletters, professional directory, annual convention, parent support, among other things. Dues around $25.00 per year. SUBJECT: Re:Hyperlexia Date: 95-03-22 21:48:59 EST From: Nexgen1701 Becky Jack I am an early childhood special educator and have a 51/2 year old student who sounds like he fits the mold for hyperlexia, his mother just became aware of the disorder. I had never heard of it until she mentioned it, she is also looking for any and all info regarding hyperlexia. If you have any to share we would greatly appreciate it. The child I am speaking of is able to read on approx a 2nd grade level, he is good with numbers, and his articulation is very exact. He has difficulty answering "wh" questions although we have seen a lot of improvement over the years (we have had him in our program for 2 years), he is able to write words and numbers but still doesn't have a proper pencil grasp, he continues to have moderate eye contact. SUBJECT: RETT Syndrome Date: 95-03-24 11:36:00 EST From: DaleP72461 We have a 9 yr. old female diagnosed w/ Rett Syndrome. We are seeking any info and/or correspondence w/ regarding interventions and prognosis. SUBJECT: Re:Agenesis of Corpus Callosum Date: 95-03-31 20:52:48 EST From: RR713 We have information on Aicardi Syndrome, a very rare genetic disorder that involves ACC. Would love to discuss this with you if interested. Please let us know. Mike and Denise Raynor SUBJECT: PRADER WILLI Syndrome Date: 95-04-02 13:33:17 EST From: Keldonia We have a mass of info on this topic. One of the staff has a 14 year old with this rare-disorder callus E mail TURN94 SUBJECT: Riboflavin responsive glutemic ? Date: 95-04-04 10:28:58 EST From: ALLOJAC I apologize for not even having the right medical term. Does this sound similiar to anyone. My brother has a son who has been suffering from a deficiency of riboflavin. They found out when he was a year. But it's not something his wife will talk to us about and he remians uneducated. That is why I do not know the correct name. She did tell me though that it is a rare genetic disorder that both parents have to be carrier of this gene. Thanks in advance. SUBJECT: Schizenecephaly Date: 95-04-09 12:12:22 EST From: JD1006 I am working with a child with this diagnosis. Would appreciate info....Thanks! SUBJECT: Re:Landau - Klefner Date: 95-04-14 21:04:52 EST From: VICKY HR I am a teacher in Dallas. I also have a child with LKS in my room. Please contact me at Vicky HR. I would be glad to share info, treatments, and methods. SUBJECT: Rosenberg-Chutorian Syndrome Date: 95-04-15 16:35:38 EST From: TONY DISAB I am a school psychologist working in the Dayton, Ohio area and have worked with two children, ages 4 and 6, who have been diagnosed with Rosenberg-Chutorian Syndrome. It's main feature is progressive neurogenic polyneuropathy . Motor development is delayed in all extremities, with walking beginning at about age 2. Gait begins to deteriorate between ages 5 and 15, with distal muscle atrophy and weakness. These two children, brother and sister, have hearing and vision deficits as a result. I have medical information pertaining to this rare syndrome and can share more information with others if needed. What I need is information from educational staff and support staff on education of multi-sensory impaired students. Please respond!! Tony Disab SUBJECT: Re:RETT Syndrome Date: 95-04-17 12:11:59 EST From: MVargo5973 I HAVE A NIECE WITH RETT SYNDROME AND CAN GET YOU LOTS OF INFORMATION ON RETT SYNDROME AS MY SISTERINLAW IS A REGIONAL REP AND ON THE BOARD FOR THE ASSOCIATION WHOSE HOME OFFICE IS LOCATED IN CLINTON MD GIVE ME AND ADDRESS AND I CAN GET INFO TO YOU I WILL LOOK FOR THE 800 # AND SEND LATER SUBJECT: RE: RETT SYNDROME Date: 95-04-18 20:39:33 EST From: MVargo5973 THERE IS A 800 PHONE FOR THE INTERNATIONAL RETT SYNDROME ASSOCIATION LOCATED IN CLINTON MD WHER YOU CAN OBTAIN LOTS OF INFORMATION THERE IS THE ANNUAL CONFERENCE COMMING UP IN MAY THIS YEAR BEING HELD IN MN AT THE MALL OF AMERICA THE 800 # IS--1-800-818-RETT LET ME KNOW IF YOU HAVE TROUBLE REACHING THE NUMBER MARGE SUBJECT: Static Encephalopathy Date: 95-04-19 11:02:39 EST From: PSLS I am a speech-lang. path. currently working with a 3 year old little girl with this diagnosis. Some symptoms include: developmental delay in all areas; mild intention tremor in arms, neck, head; low muscle tone;made all milestones until 18 months;dropped words and became gradually withdrawn age 2; chronic ear infections. Her parents would greatly appreciate hearing from anyone with a similar diagnosis. Please e-mail me with any info. SUBJECT: Pallister Killian Mosaic Synd Date: 95-04-29 18:44:37 EST From: Camiglio A friend's daughter suffers from this condition and would appreciate any information you may offer. SUBJECT: Myotonic Dystrophy Date: 95-05-05 18:37:41 EST From: PJMOSS I am interested in knowing more about congenital myotonic dystrophy, especially from parents of children with this disorder. SUBJECT: Tourettes Date: 95-05-11 11:04:35 EST From: Lew Witz I'm homeschooling a 9 yr old daughter with mild but intrusive tourettes and would to talk with others who know about the syndrome SUBJECT: Re:Hyperlexia Date: 95-05-14 07:58:45 EST From: MJP44 hi! I have a student with hyperlexia in the first grade. He is driving the regular teacher crazy and all the behavior mgt. plans i've tried have not worked. please help! SUBJECT: Re:Hyperlexia Date: 95-05-14 13:54:29 EST From: SusanS29 Many students with hyperlexia are autistic or have autistic tendencies. Does this child? SUBJECT: Re: Hyperlexia Date: 95-05-15 23:28:59 EST From: SueOTKAM All of the behavior plans in the world won't help if the teacher doesn't understand Hyperlexia or the child's learning modes, etc. On line, a woman who goes by Starbase4 is able to send you a wealth of info and specific ideas on how to work with the disorder. If you haven't already contacted her, you should. What kinds of behavior are causing problems? It may be sensory-based, as some of these kids are hypersensitive, and even a faint sound such as air in the vents can drive them crazy. SUBJECT: Re:Landau - Klefner Date: 95-05-24 15:00:00 EST From: BarManB I work with a child that was just diagnosed with Landau-Klefner. I have a little bit of information about the disorder and would love to share what I have found. Here are a few places to contact for info: National Organization for Rare Disorders 1-800-999-6673 or C.A.N.D.L.E. 1-205-271-3947. C.A.N.D.L.E has a lot of information on LKS. Hope this helps. Let me know how it goes. SUBJECT: hypoplastic cerebellum Date: 95-05-29 19:42:43 EST From: Gmroczek I have two children, Zachary 14, and Eliza 11. Both of them were born with hypoplastic (small, incomplete) cerebellums. They have no trunk balance, walk with rolling walkers, have IQ's between 60 and 65, ataxia, and speech delays. My ex wife and I have never ever met any kids that remotely resemble ours. It is a rare genetic disorder, but i have to beleive there are other folks out there somewhere with this syndrome. Can anybody point me in a direction to connect with parents of other kids with this disability? GMroczek@aol.com. Thanks SUBJECT: Asperger's Syndrome Date: 95-06-01 21:45:37 EST From: MKGY My 10 year old son originally diagnosed ADD, just diagnosed with Asperger's Sundrome (High functioning Autism). We are seeing both a Child Psychatrist and Child Pyschologist. He is in regular class room with Resource room time. Looking for resources and support groups...Kansas City/Topeka area. 16 1/2 year old son is diabetic. Does anyone have this combination of High Maintence Children? SUBJECT: ASPERGER'S SYNDROME Date: 95-06-12 10:09:19 EST From: AlSheehan I am a ninth grade German teacher who has just been informed that I will have a boy with Asperger's Syndrome next Fall. I've been told he dosen't process language and becomes violent when touched. How do I teach such a special child in the regular foreign language classroom? Please reply to Alsheehan@AOL.com SUBJECT: Moebus Date: 95-06-13 22:25:38 EST From: JCook1949 Has anyone worked with young adults with Moebus Syndrome? Have you been sucessful in job training and placement? SUBJECT: Stickler's Syndrome Date: 95-06-13 22:26:43 EST From: JCook1949 Anyone familiar with Stickler's Sydrome. I am trying to find an appropriate placement for this young man. VH says it isn't, DH says no, ER says no. HELP SUBJECT: Re:PRADER WILLI Syndrome Date: 95-06-29 13:50:51 EST From: LINSIM34 please send me information regarding Prader willi limsim94 SUBJECT: msud-Maple Syrup Urine Disease Date: 95-06-29 19:55:35 EST From: Hunny 573 I am looking for any information on MSUD SUBJECT: Re:msud-Maple Syrup Urine Diseas Date: 95-06-30 07:23:54 EST From: HLC 594 Contact the following: Maple Syrup Urine Disease Family Support Group 24806 State Road 119 Goshen, IN 46526 219-862-2992 They put out a wonderful newsletter. You can also contact: MUMS Parent-To-Parent Mothers United for Moral Support Inc 150 Custer Court Green Bay, Wisconsin 54302-1243 414-336-5333 I believe Julie Gordon, President is on AOL but I don't have her # handy. MUMS lists two families with MSUD. Please share what you find out and let me know if I can help in any other way. I am a teacher of young children with multiple handicaps working for the public school system. -Holly (HLC 594) SUBJECT: Re:Stickler's Syndrome Date: 95-06-30 07:28:40 EST From: HLC 594 Hi! I am not able to locate specific information on this disorder. If you haven't done so I suggest you contact: The National Organization on Rare Disorders (NORD) 800-999-6673 MUMS National Parent-To-Parent Mothers United For Moral Support 150 Custer Court Green Bay, WI 54301-1243 414-336-5333 Julie Gordon the President is on AOL but I do not have her # handy. Please let me know what you find out. -Holly (HLC 594) SUBJECT: Re:Moebus Date: 95-06-30 07:30:28 EST From: HLC 594 Hi! Have you contacted the Moebius Syndrome Support Group 39521 Rowen Court Palmdale, CA 93551 805-267-2570 Good luck and please let me know what you find out. -Holly (HLC 594) SUBJECT: Re:hypoplastic cerebellum Date: 95-06-30 07:43:40 EST From: HLC 594 Hi! I am a teacher of children with multiple handicaps so I am always interested in learning about rare disorders. I have a few addresses that may or may not be new to you and may or may not have the info you need. Please let me know what, if anything, you find out and if I can be of further help. NORD-National Organization of Rare Disorders 800-999-6673 They have an extensive database and snail mail networking service. Search and Respond c/o Exceptional Parent 209 Harvard St. Ste 303 Brookline, MA 02215 617-730-5800 MUMS-Mothers United for Moral Support c/o Julie Gordon 150 Custer Ct Green Bay, WI 54301-1243 414-336-5333 I'm not sure if hypoplastic cerebellum is considered a "brain disease". If so, you might try: Children's Brain Diseases Foundation 350 Parnassus Ave Ste 900 San Francisco, CA 94117 415-565-6259 Hope you find the information you are looking for. -Holly (HLC 594) SUBJECT: Re:Pallister Killian Mosaic Syn Date: 95-06-30 07:48:45 EST From: HLC 594 Hi! You will want to contact: Pallister-Killian Family Support Group 3700 Wyndale Ct Ft Worth, TX 76109 817-927-8854 You might also contact: MUMS National Parent-To-Parent Mothers United for Moral Support 150 Custer Court Green Bay, WI 54301-1243 414-336-5333 They list 3 families on their roster. Please let me know what you find out and if I can be of further help. -Holly (HLC 594) SUBJECT: MSUD-Maple Syurp Uring Disease Date: 95-07-08 09:01:33 EST From: Smoynihan I am a graduate student at Wheelock College in Boston and I am looking for any info on MSUD. My brother has it, but the information my family has is old. I was wondering if anyone has any idea or suggestions on where to find more updated info. Please let me know. E-Mail me direct at Smoynihan. Thank you. SUBJECT: Re:MSUD-Maple Syurp Urine Diseas Date: 95-07-08 09:57:28 EST From: HLC 594 Hi! For information on MSUD contact: NORD-National Organization for Rare Disorders PO Box 8923 New Fairfield, CT 06812-1783 800-999-6673 Association for Neurometabolic Disorders Cheryl Volk 5223 Brookfield Ln Sylvania, OH 43560-1809 419-885-1497 Mothers United for Moral Support c/o Julie Gordon 150 Custer Ct Greenbay, WI 54301-1243 414-336-5333 Search & Respond c/o Exceptional Parent Magazine 209 Harvard St, Ste 303 Brookline, MA 02215 617-730-5800 Maple Syrup Urine Disease Family Support Group 24806 State Road 119 Goshen, IN 46526 219-862-2992 I hope this information is helpful. Please share what you find out so others can benefit. -Holly (HLC 594) SUBJECT: Re:PRADER WILLI SyndromeThere Date: 95-07-09 13:57:37 EST From: LINSIM34 There is a message about Prader Willi Syndrome from Keldonia, I would really like more information on this disorder,my son has a lot of symtoms of this, but i need more information PLEASE! The Problem is that I don't know E mail, and that was the address. Could someone please help me get this information? Thank you ! Linda Simone Box 69 Feeding Hills, MA 01030 SUBJECT: Re:PRADER WILLI SyndromeThere Date: 95-07-10 16:30:19 EST From: HLC 594 Hi! I am a special ed teacher working with children with multiple handicaps. I have worked with some PW kids. I don't know the message you were referring to but I can provide some addresses: Prader-Willi Foundation 223 Main Street Port Washington, NY 11050 800-253-7993 Prader-Willi Syndrome Association 2510 S. Brentwood Blvd., Ste 220 St. Louis, MO 63144 800-926-4797 Prader-Willi International Information Forum 40 Holly Lane Roslyn Heights, NY 11577 800-358-0682 visink@delphi.com Hope this helps. Please share what you find out. I'd love to hear more about your interest in PW. -Holly (HLC 594) SUBJECT: sturge weber syndrome Date: 95-07-11 00:19:46 EST From: KennMc Can someone give us some background on this disorder, we are looking at adopting a child that has been diagnosed with this syndrome e-mail us at KennMc thanks, Laurie and Kenn SUBJECT: Re:sturge weber syndrome Date: 95-07-11 10:18:43 EST From: Ratatat You might contact the National Organization for Rare Disorders, P.O. Box 8923, New Fairfield, CT 06812-1783; 1-800-999-6673. Or, the National Information Center for Children and Youth with Disabilities at 1-800-695-0285. Both might be able to provide you with information about the Sturge Weber Syndrome. SUBJECT: Re:sturge weber syndrome Date: 95-07-11 15:47:47 EST From: HLC 594 Hi! I agree you should contact NORD. I also recommend you contact: Sturge-Weber Foundation PO Box 418 Mt Freedom, NJ 07970 800-627-5482 There is a SW Group in Canada if you need that information. I would also recommend you contact: Julie Gordon Mothers United for Moral Support 150 Custer Court Greenbay, WI 54301-1234 414-336-5333 Best of luck to you and please share what you find out. -Holly (HLC 594) SUBJECT: tourette syndrome Date: 95-07-13 19:26:38 EST From: Alg1234 I have two children with Tourette Syndrome with OCD and ADD. I would like to know if anyone has any information that would be helpful. I am especially interested in hearing from an adult with Tourette who could help me understand the emotional aspects from a personal perspective. I am nervous about what the future will bring and need some good news. SUBJECT: Arachnoid cyst/OHD Date: 95-07-15 05:24:16 EST From: Shug R Br Recently had a child diagnosed with this, still undergoing neuropsych testing but interested in more info. Of particular concern is long term prognosis/effects. This came about from reading difficulties (1st Grade) and ADD diagnosis from teacher; his functional abilities appear age appropriate, but has difficulty with abstraction/conceptualization. I have concerns that this will only become more apparent as he ages. We're also meeting lots of resistance from the school- still think this is behavioral/ADD. Any info on OHD's & dealing with public education also would be appreciated. SUBJECT: Help me about dev. apraxia speec Date: 95-07-16 22:48:01 EST From: BAGUABA I am working with a 6.5 year old female student with an expressive vocab. of 15 words. She fits the description of D.A.S. I need information on therapy for her. Baguaba SUBJECT: Re:Angelman Syndrome Date: 95-07-20 20:43:27 EST From: MADurkee I teach a student with Angelman's Syndrome who is also MR with severe behavioral disorders. I would love to discuss the syndrome further with educators or families. Kelly SUBJECT: Re:Angelman Syndrome Date: 95-07-25 22:53:54 EST From: Oakparkjan Good friend has a child age 18 with same and said she would be glad to speak to educators, parents, etc....email me nad I'll giv eyou more info! SUBJECT: Re:PRADER WILLI SyndromeThere Date: 95-07-26 11:59:22 EST From: LINSIM34 Holly, Thank you for the information, I have called them and recieved the info. I'm taking my son to be tested, on Aug, 31. There is a blood test they can do to find out if he is missing chromosone 15.He has so many of the symtoms, over eating , language delays, uncontrolable outburts to list a few. Thank you again, LinCim34 SUBJECT: Re:PRADER WILLI SyndromeThere Date: 95-07-26 16:40:05 EST From: HLC 594 I am glad I could help. Please let me know what you find out. You and your family will be in my thoughts. -Holly SUBJECT: Re:RETT Syndrome Date: 95-07-28 20:40:46 EST From: WAHOO15 you can write to: International Rett Syndroem Association Kathy Hunter, President 9121 Piscataway Road, Suite 2B Clinton, NC 20735 for info about Rett Syndrome I wrote here for info for my students SUBJECT: MPS/Mucopoolysaccharidoses Date: 95-07-30 07:20:53 EST From: IN ATTIC 1 I have losts of information on these disorders and what I don't have, I know where to find it in most cases. Would be willing to share this information with anyone. There is a National organization of support for these disorders along with Mucolipidoses disorders. There is much research ongoing. Ruth at IN ATTIC 1 on AOL SUBJECT: Ehlers Danlos syndrome Date: 95-08-08 15:51:06 EST From: Pat63 If your school does not know how to program your child who has EDS, contact me e-mail. There is case law to support your child's need for special services. SUBJECT: Re:Tourettes Date: 95-08-09 22:35:15 EST From: JaneC1120 I have just been hired as an intructional aid in a special ed classroom with a tourette syndrome child. Have you found any information since you posted your message in May? I live in eastern Massachusetts and plan to contact a local representative from the Tourette Syndrome Association. I am looking for information about helping the student in the classroom, helping the other students accept the student, etc. How is your home schooling going? SUBJECT: Re:tourette syndrome Date: 95-08-14 16:14:49 EST From: NLeGendre Oliver Sachs, MD is a neurologist who writes wonderfully optimistic case studies of individuals with various disorders. For an outstanding and positive description of an adult Touretter, see his most recent collection entitled, An Anthropologist From Mars. Pub. in 1994, I believe and on the NY Times best seller list. The title story, by the way, is about Temple Grandin, an autistic adult...also very optimistic and encouraging for parents! NLeGendre SUBJECT: William's Syndrome Date: 95-08-28 20:47:54 EST From: Doc Fay Has anyone heard of this disorder? Dr suspects my son may suffer from it and we'll be having genetic testing to determine if he does. Don't know if his biological parents have it. Apparently, speech and language disorders are prevalent in addition to "elf-like" facial features (thin upper lip, larger space between nose and upper lip, slightly wide spaced eyes. Please e-mail me with infor. Thanks. Doc Fay SUBJECT: Re:William's Syndrome Date: 95-08-30 15:09:48 EST From: HLC 594 Hi! Contact the following for more information: Williams Syndrome Association PO Box 297 Clawson, MI 48017-0297 810-541-3630 Good luck and let me know how things turn out. I am a teacher of young children with multiple handicaps. I have done alot of reading on various syndromes including Williams. I may have some additional sources of information if you need it! -Holly (HLC 594) SUBJECT: Re:ASPERGER'S SYNDROME Date: 95-08-31 14:14:00 EST From: Cqview Right now Asperger's syndrome is a trendy word in the field. A neurologist and a birth to three information told me that my son who was diagnosed with Asperger's actually was rediagnosed with severe aproxia which is a language disorder. Do know anything about Aproxia? SUBJECT: APROXIA Date: 95-08-31 14:16:47 EST From: Cqview My three year old son has been diagnosed with severe aproxia. He attends special ed preschool services. Where could I find information about the disorder? Do you know anyone who has this disorder? SUBJECT: Re:Landau - Klefner Date: 95-09-03 01:19:46 EST From: GB4590 There are two Neurologists that are considered to be THE experts on the subject -- one is Dr. James Riviello out of Children's Hospital in Boston and the other is in Philadelphia, Dr. Stefanados (spelling?). Both are terrific and quite accessible and should be quite helpful. Good Luck! SUBJECT: Panhypopituitarism Date: 95-09-04 16:36:13 EST From: Dls3 I am looking for contact with parents of kids with Panhypopituitarism who are receiving GH therapy? I know that Panhypopit is rare, and many of my more pressing concerns center around the GH therapy. My daughter is 11 years old, was diagnosed at 3 weeks old and has been on GH therapy (and every other hormone) since before Protropin. If anyone even understands this, please respond or E-mail at Dls3@aol.com Many thanks-- SUBJECT: scotopic sensitivity screening Date: 95-09-04 19:57:23 EST From: DennisK472 I am looking for more information on this topic, I'd also like to hear from parents whose children are either using the colored overlays or colored lenses. Have their children become more interested in reading? Jane SUBJECT: Re:scotopic sensitivity screenin Date: 95-09-04 21:25:05 EST From: SusanS29 Dennis, true story. A friend of mine has a couple of children with learning disabilities and/or ADD. Three years ago she called to tell me the lenses were wonderful and her daughters were making tremendous progress. Last November it turned out the eighth grader is still nearly a non-reader, and does her school book reports by listening to Talking Tapes and watching VCR movies of the books she's supposed to read. SUBJECT: Re:Peter's Plus Syndrome Date: 95-09-07 10:28:59 EST From: NPPSIS Doris-Hi we are NPPSIS and we deal with rare disorders. Maybe we can help find you a match. SUBJECT: Re: Ronin Warriors Date: 96-03-02 21:26:03 EST From: PLUMBVAC The Ronin Warriors are coooollllllll!!!!!!!!!! I would like to be like them someday. Especially if somebody tried to beat me up. SUBJECT: RE: MOTO GUZZI PARTS Date: 95-12-07 13:58:12 EST From: Laidig95 WE HAVE A LARGE INVENTORY OF PARTS FOR THE GUZZI MOTORCYCLES. OUR STOCK IS USABLE FAST MOVING INVENTORY. WE SIMPLY GOT SO INVOLVED WITH KTM DIRT BIKES AND RACE TECH SUSPENSION THAT E DON'T HAVE THE TIME FOR GUZZI. GIVE US A CALL OR EMAIL US . WE CAN SEND YOU A COMPLETE LIST OF PARTS WITH PRICES. ONLY WILLING TO SELL COMPLETE INVENTORY. LAIDIG95@AOL.COM,PH 216-253-7455. SUBJECT: Re: Points of Disagreement Date: 96-03-03 22:26:56 EST From: Karen Faye Suzanne, Thank you for responding to my question. I really do want to understand the points of disagreement. I, too, have found that some of the information that comes my way through "alerts"is difficult to understand and also sketchy. (One of the reasons I am so happy to see Jennie posting here is that I am about 12th down on our phone tree from the original "alerter" and have had more than one experience where I was totally embarrassed in front of our local state representative when the information that came to me was completely the OPPOSITE of what it was supposed to be!) I would rather get it straight from the horse's mouth, so to speak. I hope more people will share their views and we can work through some of the differences. FWIW, I am on several phone trees and get tons of politically oriented mail. Some of the things I am asked to respond to by Christians are not, in my opinion, Bibically correct. So my position is to ignore that request. That does not mean that I throw out the whole organization. Thanks again for responding and thanks for not sounding hateful! :) Karen SUBJECT: Re:Cornelia de Lange Syndrome Date: 95-09-15 12:58:26 EST From: Jazzer1033 I am from NH and work with a little boy with CDLS If you need additinal info I can be reached at Jazzer1033 SUBJECT: OCD Date: 95-09-16 22:55:10 EST From: Kissel5 I am the parent of a 9th grader with Obsessive Compulsive Disorder. My child is in an inclusion program and is doing very well so far. Is there other parents / teachers that have experienced this disorder in their child / student with success? SUBJECT: Re:Cornelia de Lange Syndrome Date: 95-09-17 20:57:57 EST From: JUDYWARNER I also teach a student with CdLS. I would love to share experiences if you have more specific questions, after reading the materials their organization publishes. Judy Warner SUBJECT: CdLS-Judy Warner Date: 95-09-18 13:18:53 EST From: Jazzer1033 Hi Judy, I have read all the foundation 's literature regarding CdLS. Our school works with a member of the scientific advisory board for CdLS. I would love to exchange strategies and ideas. Maryanne SUBJECT: Re:Cornelia de Lange Syndrome Date: 95-09-18 15:03:34 EST From: HLC 594 Hi! I too teach a child with Cdls. I would love to share thoughts and ideas! -Holly (HLC 594) SUBJECT: Re:Cornelia de Lange Syndrome Date: 95-09-19 12:12:29 EST From: Jazzer1033 Hi Holly, Glad to have you! We are constantly re-thinking and changing ideas regarding the education of our student. We are looking at a life skills curriculum so as to maximize our student's survival skills. He has no language but uses a communication board and primative gestures. We are looking at issues such as toilet training, toothbrushing, all functional skills that will take quite a long time for this student. He is very mobile and can get stimualted easy. Just a few thoughts to think about I'm sure you and Judy have some as well! Maryanne SUBJECT: Re:Cornelia de Lange Syndrome Date: 95-09-19 15:07:46 EST From: HLC 594 Hi! My student is in the fifth grade. She is in a self-contained class for the trainable mentally handicapped. She has K-1 academic skills, good self help... She is profoundly dead and has a cochlear implant. -Holly (HLC 594) SUBJECT: Re:Cornelia de Lange Syndrome Date: 95-09-19 20:41:18 EST From: JUDYWARNER My student is 10 years old, very mobile, and severely retarded. He is also easily stimulated. I teach a class of 6 Multiple Handicapped students, but he is attending 4th grade Art, Music, and PE with an assistant. He is just starting to use pictures. He can sign, "please". However, he is very opositional and doesn't want to do things that he knows we want. He usually lets us know what he wants by taking us there or getting into things. He's very healthy, except for reflux problems every so often, and he is prone to colds. He likes to manipulate things and try to take them apart. He also likes to hide in things. It is difficult keeping him occupied and on task, but he is improving. I would love to hear more from the rest of you. Judy SUBJECT: Re:Cornelia de Lange Syndrome Date: 95-09-20 12:01:17 EST From: Jazzer1033 Hi My student sounds very similar to yours in particular Judy. Our seven year old little boy is in a full inclusion classroom for the entire day. Our school does not have a resource room. We have a cubilce set up within the room that he naps in and also is taken into if he is escalated. We use lots of deep pressure tecniques and even use an obsolete lead apron that a dentist donated to help ground him. He uses a sequence board and symbol boxes with objects to help him understand the schedule of his day. He likes music and we have a tape-squence board that he co-actively uses. He loves to climb so we spent a lot of time in the playground on some days. He interacts very little with his peers since cognitively functioning at a much lower level. Maryanne SUBJECT: Re:Cornelia de Lange Syndrome Date: 95-09-20 16:37:15 EST From: HLC 594 Hi! I would love to hear more about the sequence board, symbol boxes and tape-sequence board. Any specifics you can provide will be appreciated. I have a student who is NOT Cdls but sounds alot like your student. I am constantly searching for ideas for working with her. The lead apron idea sounds wonderful. The products I've seen in catalogs are SOOO expensive. I have a few ideas for making some but have NO talent. We do lots of deep pressure stuff too. Do you have any written info related to it? -Holly (HLC 594) SUBJECT: Re:Cornelia de Lange Syndrome Date: 95-09-20 20:44:21 EST From: KTJ OTR It appears that everyone else knows what CDLS is. Could I ask for an explanation or description of symptomatology/behaviors? SUBJECT: Re:Cornelia de Lange Syndrome Date: 95-09-21 20:02:33 EST From: JUDYWARNER The lead apron idea sounds good to me also. We have a colapsable tunnel and a small tent that my studnet can crawl into and hide. He also likes to climb, which is a constant problem. We use a Rifton chair to seatbelt him in when he gets too wild. We also do a lot of deep pressure techniques. He likes "bean-bag sandwich". We lay him on a beanbag and put another one on top and apply pressure. This calms him a lot. We also recently got out a hula hoop. He likes walking around in it while an adult holds it. He really seems to want physical boundaries. I can't imagine having him in regular classes all day. I give you credit, Gloria! My student does not cooperate with picture or symbol boards much. He wants to do things his way. To KTJOTR: CdLS is a congenital problem. These children have small faces with bushy eyebrows. Hands are small and hands and feet are often patially webbed. They are often very small and grow very slowly. My 10 year old student is about the size of a 4 year old. They often have heart and digestion problems, leading to reflux (vomitting). They are usually developmentally delayed, sometimes to a severe degree. They can be very active. For more information, write to the CdLS Foundation, listed in an earlier message. They will send you a very informative booklet. I'm anxious to hear more from all of you. Judy SUBJECT: Re:Cornelia de Lange Syndrome Date: 95-09-22 07:38:46 EST From: Jazzer1033 Hi all! Judy did you ever think of putting a climbing structure, just a small one right within your room. We have a small one in our early intervention pre-school that my student uses. It is only 3 feet by 3 feet and about 4 feet high. He loves it and likes to hide in it as well. Thank goodness for rifton chairs. My student also is prone to colds as well. We are starting to try to shape his behavior by using food tokens, usually cereal, since that is the only meaningful way to reach him. It sounds primative but a behaviorist suggested it and it seems to be working. Though it must be carefully controlled. Maryanne SUBJECT: Re:Tourettes Date: 95-09-25 14:05:18 EST From: BAINS SCH Am looking for information on disability awareness training for 6th grade students about tourettes syndrome. Can you help? Send information to Bains Sch.AOL. Thanks! SUBJECT: Marshall's Syndrome Date: 95-09-28 19:03:43 EST From: DPRETTY Anyone have any information on Marshall's Syndrome? SUBJECT: Retts symdrome-need help quick Date: 95-09-29 11:56:34 EST From: Peacock351 I'm podting this for linn, my sister in the Lord. Her daughter Amy was diagnosed with retts around two years ago.. Prior ddiagnosis was CP. Amy had a bad( worse than usual) seizure in school on Wednesday, and teacher reported some facial swelling. She was admitted to Childrens Hosp. yesterday. ...the long and short of the problem...CT shows 'something was thrown' perhaps a clot. The swelling is still continuing to get worse and there appears ti be diminished facial control on one side. Question...are strokes part of this syndrome? In all the info Linn had on this, there was nothing about this. She would appreciate any info or advice. Please email as I may not find this board again. (but I'll try) Sue SUBJECT: Re:Cornelia de Lange Syndrome Date: 95-09-30 20:11:03 EST From: JUDYWARNER Hi! Maryanne, I tried to get climbing equipment, but my supervisor would not approve it due to liability concerns. The food idea sounds like a good one, although he still does not want to cooperate all the time, even if food is involved. However, that does seem to be his main interest, so I may try it some more. He is finally signing "please" for food sometimes, so maybe it will work. Thanks for the suggestions. Judy SUBJECT: Re:Tourettes Date: 95-10-02 12:21:21 EST From: EMERJEWEL To: Lew Witz From: EmerJewel Date:10/02/95 Lew, my 8 year old son has Tourette. He is a very bright child that luckly has a good sense of himself. He is taking Clonidine (catapres) and Nortriptlyne (pamalor). It seems to help most of the time, but when the pendulem swings, his tics become extreamly noticable. Is your family a member of the Tourette Syndrome Association? They have been immeasurable help to my family. You can E-Mail me : EmerJewel. Your not alone in this. Good luck. SUBJECT: CHARGE Association/Syndrome Date: 95-10-12 14:19:07 EST From: SH4 WHLS Can anyone tell me anything about the CHARGE Syndrome? I have a new boy in my class and he was just diagnosed with this. Thank you. SUBJECT: Re:CHARGE Association/Syndrome Date: 95-10-14 19:28:50 EST From: CTamburell Hi, My son has the diagnosed with CHARGE Association. It is characterized by any combination of the following symtoms:Collaboma of the eyes, hearing loss, retardation of growth and development, heart defects, underdevelopment of the genitials. My son is placed in a school for children with autism. I have always felt that CHARGE did not tell us a lot about how Michael functions. I think that the researchers are just now learning what to expect long range from these kids. There is an association based in Mo. that publishes a newsletter called CHARGE ACCOUNTS. Let me know how your student does. Cathy Tamburello SUBJECT: Neurofibromatosis (NF) Date: 95-10-15 01:47:24 EST From: Vjpcook It is now accepted information that 60% of people affected by NF disorder have learning disabilities. When observing children, look for the signs of NF---bowed long bones, freckling in the groin and armpits, cafe au lait spots (6 or more), tumors or schwanomas in the spine or central nervous system. This genetic disorder affects 1 out of 4,00 individuals and is more common than cystic fibrosis. Although it is inherited, 50% of thos with it are spontaneous mutations. Write to the National NF Foundation or NFINC. in Maryland should you want more information. SUBJECT: Re:CHARGE/CTamburell Date: 95-10-16 18:58:46 EST From: SH4 WHLS Thank you for the info. Could you give me the mailing address for the CHARGE newsletter, so I can pass it on to the parents. Greatly appreciated. You can send it to my e-mail. SH4 WHLS@aol.com SUBJECT: Re: Cornelius de Lange Syndrome Date: 95-10-17 19:01:37 EST From: JUDYWARNER My student is making himself vomit daily about 30-45 min. after lunch. He sticks his fingers in his throat and/or forces coughs until he vomits. He then laughs. Any ideas how to stop this behavior? Judy SUBJECT: Re:CHARGE/CTamburell Date: 95-10-18 13:57:19 EST From: HLC 594 Hi! Charge Syndrome Foundation 2004 Parkade Blvd Columbia, MD 65202-3121 800-442-7604 mnorbury@bigcat.missouri.edu -Holly (HLC 594) SUBJECT: RE:vomiting Date: 95-10-26 09:29:25 EST From: A1Richter5 I'm not anexpert in anything, but if one of my own children were doing this, first, I would not respond to this behavior directly to the child, as it can be trying for negative attention. If it continues, I would think a thorough phsical exam would be in order. If that shows nothing, then definitely a neurological workup, and go from there. SUBJECT: Epilepsy Date: 95-10-27 21:01:58 EST From: Teacher2M I am a CMC teacher and have recently ARDED in a student with epilepsy and who has severe seizures. As true with epilepsy with each seizure she loses a little more of her memory. I am looking for any suggestions and programs that will help me to teach this child. She is a first grader and is really struggling. I would like to be able to help her feel successful. You can send any information to Teach2M @aol. com. Thanks. SUBJECT: Re:Teach2m E-mail Date: 95-10-27 21:35:02 EST From: Teacher2M Oops, it has been a long day! Please send any conmunications to Teacher2m@aol.com. Thanks. Sorry for the misinformation. Looking forward to receiving some information. SUBJECT: Re:William's Syndrome Date: 95-10-28 10:35:16 EST From: TNBB to Doc Fay: The National Association has much info on the subject of William's Syndrome. They are a great place to start. As an educator and parent, I have recently (99.9% sure) discovered my 7 year old step son has Williams. We have not gone through a formal diagnosis yet. That is forthcoming. My husband and I are attending the national conference in Vegas on the 4th of nov. and look forward to receiving much needed info. Take care and please contact the National Assoc. SUBJECT: Re:msud-Maple Syrup Urine Di Date: 95-10-28 15:12:34 EST From: Dizzyd1734 An Excellent doctor in this are has a clinic for special children in this area is Dr. Holmes Morton P.O. box 128 Bunker Hill Road Strasburg PA 17579 (The clinic for special children). I also have other resources if you need them. They have cookbooks and newsletters and food suppliers. Good Luck SUBJECT: Re:MSUD-Maple Syurp Uring Di Date: 95-10-28 19:43:09 EST From: Dizzyd1734 My son has isovaleric acidemia, he cannot breakdown leucine. The doctor I go to Dr. Holmes Morton, The Clinic For Special Children, Bunker Hill Road, Strasburg, PA, put my son on baking soda, to reduce the acid the can accumulate. My son also takes MSUD II. There is a book available FOOD VALUES OF PORTIONS COMMONLY USED by Jean A. T. Pennington Harper and Row publishers. Also there are news letters, recipes from Low protein food distributors, and cookbooks. Hope this helps. I also have an emergency hospital admitting papers in case my son gets suddenly sick and has to get stablized right away. D. SUBJECT: Isovaleric Acidemia Date: 95-10-28 19:46:11 EST From: Dizzyd1734 Anyone having tips on handling disease?? MY son is 9 years old and has this disease. It is related to Maple sugar urine disease. He cannot break down the amino acid, leucine. He HATES fruits and vegetables. Anytime he tries them, he gets a strong gag reflex and I lose his medicine. So he has to retake medication plus I've lost the food. Does anyone have any helpful hints. I tried puree, etc. Any interesting combinations? Thanks SUBJECT: Re:Isovaleric Acidemia Date: 95-10-31 08:26:55 EST From: HLC 594 Hi! Have you been in touch with the MSUD assoc or the Assoc for Neurometabolic Disorders? I can also give you some snail mail addresses for networking with other parents. Let me know if you need or want this info. I am a teacher working with young children with multiple handicaps. I have a special interest in researching different disorders. -Holly (HLC 594) There is also an Organic Acidemia Association SUBJECT: Re:Isovaleric Acidemia Date: 95-11-03 07:00:11 EST From: Dizzyd1734 Hi, I would love that information. I've tried to get some informational newsletters, one was outbased in California, but they haven't responded to my requests. I tried the National Organization of Rare Diseases which did respond. I'd like to find someone I could talk to about the disease and how to manage the school age child. I would appreciate any help you could give me. Thanks SUBJECT: Re:Isovaleric Acidemia Date: 95-11-04 10:47:30 EST From: HLC 594 Hi! I posted some addresses for you today. Please let me know what you find out! Best of luck! -Holly (HLC 594) Your messages are getting through just fine. You must be a quick learner. SUBJECT: IgA Date: 95-11-04 21:26:47 EST From: Peacock351 Parent to Parent director would like information on immune deficiency IgA. Please e-mail Sharon at JOHN223W@WONDER.EM.CDC.GOV.Thanks. SUBJECT: Re:IgA Date: 95-11-05 08:48:38 EST From: HLC 594 Hi! You can contact the: Immune Deficiency Foundation 25 W. Chesapeake Ave, Ste 206 Towson, MD 21204 800-296-4433 I would love to hear what you find out. -Holly (HLC 594) SUBJECT: Neurometabolic Disorders Date: 95-11-15 08:02:12 EST From: MJDecDen Please send information on the Association for Neurometabolic Disorders. We have a 16 year old with an unnamed metabolic disorder and would love to talk to others in the same situation. Our son cannot process lysine and tryptophan. Thanks. Mary Jane SUBJECT: Re:Neurometabolic Disorders Date: 95-11-16 18:03:11 EST From: HLC 594 Hi! Association for Neurometabolic Disorders 5223 Brookfield Ln Sylvaania, OH 43560-1809 419-885-1497 Is this what you need. Please let me know if I can help further. -Holly (HLC 594) I would love to hear more about your daughter and the information you find out. SUBJECT: Re:Neurometabolic Disorders Date: 95-11-16 18:04:27 EST From: HLC 594 My humble apologies. I would love to hear more about your SON. -Holly SUBJECT: What is PPD? Date: 95-11-17 14:39:42 EST From: BillWis I am an elementary teacher and no one has given me a clear cut description og PPD. All i know is it is like ADD but can not be controlled with medication. Can anyone give me some info on that? please e-mail me : billwis@interserve.com any information will be appreciated! SUBJECT: Re:What is PPD? Date: 95-11-17 15:51:41 EST From: SusanS29 "I am an elementary teacher and no one has given me a clear cut description og PPD. All i know is it is like ADD but can not be controlled with medication." If you mean PDD (Pervasive Developmental Disorder) it's not anything like ADD, although some children with a diagnosis of PDD will also have a diagnosis of ADD. SUBJECT: LD/ADD and Apnea Date: 95-11-18 12:18:55 EST From: RNEllen My ten year old son has LD (auditory processing delay), language delay, and ADD with IQ measured at least 140. Medicated successfully with Ritalin. Making tremendous progress in private school for special ed :) In late infancy, experienced obstructive and central apnea that he eventually outgrew (I think). Question: Anyone experience or know of correlation between LD and/or ADD and history of apnea? Have heard of ADD being confused with Nocturnal Apnea in childhood. Just curious...Ellen SUBJECT: Re:LD/ADD and Apnea Date: 95-11-18 22:37:04 EST From: SusanS29 I don't think any competent diagnostician would mistake the two, but they could present some similar problems on the surface, because lack of sleep impairs the attentional abilities of everyone. I would have it checked out, because Ritalin can artificially disguise the sensation of being tired -- and hence, disguise an on-going sleep disturbance. SUBJECT: Re:OCD Date: 95-11-24 14:00:27 EST From: RNaditch What kind of OCD does your son have? SUBJECT: cohen syndrome Date: 95-12-01 19:33:41 EST From: SANHALL I have just staffed in a new student who has cohen syndrome. I have no idea what it is or what it entails. If anybody can send me information or tell me where to find it, I would appreciate it. She is third grade with some verbal skills, but not many. She can be stubborn and her coloring skill is good. She can count to four but not consistently. Please e-mail me at sanhall. thanks. SUBJECT: LKS Date: 95-12-02 17:33:11 EST From: RNaditch I am a Special Educator looking for info on Landau-Klefner Syndrome. Any info. would be appreciated. e-mail me directly RNaditch@aol.com SUBJECT: Kawasaki Disease Date: 95-12-03 00:47:46 EST From: Brendemuhl Anyone know of this disease, have children with it and has experience with amputations and cardiac arrest? Please write to Brendemuhl.com SUBJECT: Re: Placental abruption synd Date: 95-12-07 15:32:13 EST From: Amos McD I have an almost 8 year old son who was born at 29 weeks due to placental abruption syndrome. At the time he was born, this syndrome had not been identified. It is now known to be a condition where the mom has small abruptions of the placenta, with bleeding/hemorrhaging up to week 14 of the pregnancy. Later (in my case week 20) ultrasounds show very little or no amniotic fluid( oligohydramnios) due to lack of blood flow through the damaged placenta. Most babies die in utero. Those that survive to a viable age (28 weeks, 8 yrs ago) die shortly after birth from hypoplastic lungs(underdeveloped lungs) due to lack of amniotic fluid. My son survived with surprisingly no lingering lung problems (although the ventilator blew a hole in his lungs the first 6 hours, and he came home on O2 for 9 months (from lung damage from the ventilator!). However, my son has had an unusual medical course for a 29 week preemie, and although he has been seen by a genetic specialist and many other docs, no one has been able to come up with a specific condition for him. I know there may not be one, but if there is it would help us know what the future holds. If anyone knows of a baby that has survived this pregnancy condition or knows where I could go for more info, please let me know. I would prefer not to list the many problems he has until this syndrome is first a match. I have already checked with my perinatologist, and he is not aware of anyone in our area who matches this condition. Thanks for your help! SUBJECT: Re:Agenesis of Corpus Callosum Date: 95-12-19 19:25:57 EST From: Mankatoe I HAVE A STUDENT ON MY CASELOAD WITH THIS SYNDROME. I WOULD APPRECIATE ANY INFO ON EDUCATIONAL STRATEGIES. SUBJECT: Noonan Syndrome Info Needed Date: 95-12-21 13:37:33 EST From: CTamburell Is there anyone who can share info about Noonan Syndrome? SUBJECT: Re:RETT Syndrome Date: 95-12-23 23:23:47 EST From: Lishie have you contacted NORD? They sent me lots of info. on RETT syndrome. Their address is 100 Route 37, P.O. Box 8923, New Fairfield, CT 06812-8923. There's also the Rett Syndrome Assoc. at 9121 Piscataway RD., Suite 2B, Clinton, MD 20735 SUBJECT: Re:Tourettes Date: 95-12-31 13:29:41 EST From: KWilli9730 I amthe mother of a 14 yr. old daughter who was diagnosed with ADHD in second grade. From that point on we have constantly fought with the schools about her education. Ayear and a half ago she was diagnosed with Tourettes and finally OCD. With all these problems she is also emotionally handicapped. At many times she acts like a 5 yr old instead of a 14 yr old. We just don't know what to do at this point. She is on haldol and cylert for the TS and ADHD. She also takes anilfranil and klonopin for OCD and to calm her down. She has yet to go to school this year, she has a homebound teacher for 4 hours a week. Last year thngs just got so bad with her TS, and the other kids teasing her, mostly because of her cough tic, they would tease her and say the word "cough" or just fake cough, and that woould cause her to do it more. She knew when they were teasing her and would get real upset and yell and them. Because of this she wasn't learning much and it was taking so much of the teachers' time the school board had her put in a wilderness camp. That didn't last but three months because they teased her at camp, didn't even know what tourettes tics were, even after we educated them on it. So we brought her home. She was already in a special EH class at school, so even though it was a special class, the kids still picked on her. Her test scores are too high for her to be in the EMH (mental) class, they say she is too smart for that even though she is below grade level, working on a 5th and 6th grade level though she is in 8th grade. We often wonder if there is anything wrong mentally, but doctors can't confirm, she has so many problems and they are all tied in together, its hard to tell. SUBJECT: Re:Tourettes Date: 96-01-01 12:48:20 EST From: TJennMesa My name is Theresa Mesa - my son and I have Tourette Syndrome. I'm the editor of the Southern California Chapter newsletter for the Tourette Syndrome Association and Board Member for the chapter. If you have any questions about TS and its associated disorders - ADHD and Obsessive Compulsive Disorder, please e-mail, and I will try to answer your questions. Although I am quite knowledgable about these disorders, I don't know everything, but I have many, many resources. My good friend is the Vice President/Medical Liaison for the chapter (she is an R.N. and is also VERY knowledgable about the Kaiser system) AND she's the Inland Empire Support Group Leader. She's written a continuing education program for Registered Nurses about TS. Our neurologist is a specialist in TS and is the Chief of Pediatric Neurology at Loma Linda University Medical Center (where they do all the baby heart transplants you hear about on the news). I only check into this about once a week, so you will need to e-mail me. Theresa SUBJECT: Williams Syndrome Date: 96-01-08 23:14:41 EST From: RBarrett66 I am a first year MR teacher. I have a student with Williams. I would really appreciate any info or advice. Some days I am at witts end. He really gets fixated on certain subjects ( sex). He is in third grade. Any advice or info??? SUBJECT: Irlin Syndrome Date: 96-01-10 20:14:48 EST From: MBurd0609 I am interested in any information about this syndrome. My child is having difficulty with spelling and sometimes loses her place when reading. The teacher is having her read with green filtered paper and says she suffers from Irlin Syndrome. I do not understand how a diagnosis can be made with no formal testing. I can't seem to find any information on the Web. Thanks for any help you can give me. SUBJECT: Re:Williams Syndrome Date: 96-01-11 17:25:45 EST From: HLC 594 Hi Have you contacted: Williams Syndrome Association PO Box 297 Clawson, MI 48017-02297 810-541-3630 -Holly (HLC 594) SUBJECT: Re:Irlin Syndrome Date: 96-01-11 17:30:10 EST From: HLC 594 Hi! I am a special ed teacher with a little info that might help. I believe the disorder is referred to as Scoptopic (sp?) Sensitivity. There is a center or centers called the Irlin Institutes that assesses and prescribes treatment for this condition. It involves using filters and and/or colored lenses to correct vision/perceptual difficulties that effect reading/learning. I am probably not describing this correctly. There is a book out called Reading By the Colors that describes it accurately. If you want further information let me know and I will look up some addresses. -Holly (HLC 594) SUBJECT: Re:Irlin Syndrome Date: 96-01-12 00:07:49 EST From: SusanS29 MB I agree with you. There is no "Irlin Syndrome" that I know of. There is the Irlin Institute, which sometimes fits people with specially-colored lenses (according to them different people need different colors). The testing and lenses are expensive. The idea that this works or is valid in any way has not been demonstrated by anyone not associated with the Irlin Institute so far as I know. This is an "alternative" approach. If it were my child I would want in-depth testing to find out exactly what the child's difficulties are. SUBJECT: Re:Irlin Syndrome Date: 96-01-13 08:56:48 EST From: Ratatat <> Susan, I agree that the only evidence that the color sensitivity thing exists comes from the Irlen people....and interestingly, only they are "trained" to test for this sensitivity and recommend colors, order the lenses, etc.... I understand that the evaluation costs about $150 and the lenses can cost about $300. And, I understand that people's "colors" can change over time, so one would have to continue to be re-evaluated and fitted with new lenses periodically. And, I understand that sometimes people's colors can change as quickly as every 6 months. This I heard from a person who was giving a pitch at a conference I went to on Attention Deficit Disorder. I had no idea that I was really going to hear a sales pitch on the Irlen theory! I asked my daughter's pediatric ophthalmologist about this. He is involved in national and international research issues and sits on the board of the national ophthalmologic board. He told me that they have not been able to support any of Irlen's claims independently. So, basically, I guess - it is a pretty good way for somebody (not the child's family) to have a pretty good cash flow! SUBJECT: Re:Irlin Syndrome Date: 96-01-13 11:33:12 EST From: SusanS29 "So, basically, I guess - it is a pretty good way for somebody (not the child's family) to have a pretty good cash flow!" It's so hard for the families. I think some of these people mean well, but since they aren't schooled in research (or have abandoned that path) they don't realize their results may not be what they think they are. I have a friend who spent this money on her daughter. She enthusiastically reported to me six months later on that her daughter was doing "much better!" She was so enthusiastic about Irlen lenses. That was when the child was in fourth grade. I saw them (they've moved) when the child was in eighth. This child was using Talking Books, so it would seem the Irlen Lenses didn't *really* improve her reading very much. But the Irlen people haven't heard about this longer-term failure; the family has since moved on to other approaches. I have to wonder... if they hadn't been side-tracked by the Irlen lenses, or if they had spent that money on tutoring, or fighting for a more appropriate education for their child... would she be using talking books now? I don't know. SUBJECT: Re:popliteal phertrygim disd Date: 96-01-14 02:05:07 EST From: ATil7212 I have two daughters with this syndrome would like to hear from other parents see how they have survived. lost and frustated in a world of medical problems. please e-mail SUBJECT: Re:What is PPD? Date: 96-01-14 17:08:06 EST From: Doubledash PDD is pervasive developmental disorder. It is similar to autism in that children with PDD have lesser characteristics than those classified with autism. If you would like more information please e-mail doubledash@aol.com. SUBJECT: Turner Syndrome Date: 96-01-14 19:53:12 EST From: Shellie5 Turner Syndrome is not really all that rare, so I am not sure if I am in the right forum or not. My daughter is 6-1/2 years old and was diagnosed with Turner Syndrome at birth. It was detected because of her extremely swollen hands and feet, as well as a dislocated hip. She also happens to have Attention Deficit Disorder, which we have heard mixed reviews about its tie in with Turner Syndrome. Anyone here with a connect to this syndrome? SUBJECT: Sotos Syndrome Date: 96-01-16 19:58:29 EST From: B754552 I am looking for parents who have a child with the diagnosis of Sotos Syndrome or Soto's like Syndrome. We have an 9 year old daughter in a full inclusionary classroom with an educational assistant. She is doing very well. We belong to the national assocation, but I would like to "chat" with other families to see how their kids are doing. Lisa and Brian SUBJECT: Re:Tourettes Date: 96-01-17 19:56:15 EST From: RemoDog From: Ryan Smith To: Lew Witz I am a 15 yr old with Tourettes, diagnosed at age 8. I have been attending spec ed classes since 3rd grade and have been progressing extremely well. I am now in the 9th grade and am on a standard diploma program, making B's and C's. I've taken several kinds of medications over the years, but right now I am only taking Lithium, Risperdal and Clonidine. We have been very fortunate to have found an excellent child psychiatrist and pediatric neurologist who are knowledgeable in Tourettes. I would be interested in chatting with your daughter if she has any questions. Good Luck from someone who cares! SUBJECT: Landau-Klefner Date: 96-01-17 21:07:15 EST From: Frogguy7 Hi--looking for info re Landau-Klefner. I'm working with a family with a 6 year old diagnosed autistic and a 3 year old with many signs of autism. Recent use of steroids to improve allergy problems have resulted in improved communication. What's up? Would like references, contacts, whatever's available!! Thanks! Mary SUBJECT: Scotopic Sensitivity Date: 96-01-22 00:13:36 EST From: WillisFrog Scotopic Sesitivity is what is ment by the Irlin Syndrome. I do have Scotopic Sensitivity and use a rose overlay to read. I was always told that I was lazy and that is why I didn't like to read ( I was an honor student all my life). I learned in my last year of college that I wasn't seeing the words like everybody else. When I look at the page the words flicker and a white shadows overtakes the letters. The overlay has cut my reading time in half and make a difficult chore a joy. I hope to someday get lenses to see the world the way many other people see it. It is to be understood that Helen Irlen never said that the lenses that she developed were a cure all to reading problems, but they are just another way to help. If your child has an auditory processing problems the lenses will not fix that. The lenses filter out the color in the light spectrum that your eyes are sensitive to. The screening that they give in school can take only a few minutes, but it needs to be explained to the parents exactly what SS is. I did the screening myself for two years before someone on my campus was trained to do the extended screening. It was through the extending screening that I realized that I had the exact problem that I had been testing the kids for. You can say what ever you want about the validity of this technology, but don't you dare take my overlay away!!!!!! Julie SUBJECT: Re:Amniotic Band Syndrome Date: 96-01-22 22:11:09 EST From: EDono83407 I am not a parent of a child with Amniotic Band Syndrome but am an aide in a special ed classroom and we have a new student with this syndrome. I as an aide would also like any info on this. SUBJECT: Recombinant 8 Syndrome Date: 96-01-23 00:27:10 EST From: Wlirwin We have a 5 year old son who has recombinant 8 syndrome which is a very rare genetic disorder. We would like to be in contact with any other families who may have children with this same diagnosis. Thank You! SUBJECT: Re:Tourettes Date: 96-01-23 10:34:39 EST From: OB0 Don't know if I can help but talk. My son who is 11 this feb. Has been diagnosed this past year with TS/ADHD/ severe anxiety disorder/LD/ Agression disorder and bipolar depression. It has been the roughest year because finding the right medication combination has been nerve racking and rough on everyone. Mostly my son. He is homebound till we can balance the proper meds and thats been since Oct. Send me questions maybe through my research I can answer some/ Maggie OB0 SUBJECT: Re:Tourettes Date: 96-01-23 10:37:51 EST From: OB0 Your best bet, as I found out was to contact your local TS Chapter. They sent me wonderful stuff on TS and materieal for school. OB0 SUBJECT: Re:Tourettes Date: 96-01-23 10:39:06 EST From: OB0 No you are not alone,...TS seems to be showing up alot lately. My son is 11 almost and just recently diagnosed. I can be contacted online OB0. Maggie SUBJECT: Re:Tourettes Date: 96-01-23 10:42:29 EST From: OB0 I can sympathize with your problem. My son is 11 and just recently diagnosed and has been homebound since October...due to balancing medications and school phobia. He is now on Clonidine for the TS, Milleral for his severe anxiety and lithium for his bipolar depression which causes so many pendulum swings. you can contact me online OB0. Maggie SUBJECT: leukodystrophy Date: 96-01-24 00:55:02 EST From: CarlieMae Interested in information re post-infectious leukodystrophy. Two boys, ages 7 and 5, with severe impairment. SUBJECT: Sound Familiar? Date: 96-01-28 22:39:48 EST From: Amos McD I posted in December about my son who remains a medical mystery. I didn't give alot of details and have not received any response about what I had posted, so I thought I'd better give more detail! My son was born at 29wks gestation due to placental abruption syndrome. I will give a list of his medical complications in the hope that they may sound familiar to anyone. He had bilateral inguinal hernias, hypercalcemia, nephrocalcinosis, gastroesophageal reflux, failure to thrive requiring a gastrostomy tube placement at age 1 year, kidney stone, gross and fine motor delay. Some of this can be explained by his prematurity, but the conditions that still remain cannot. He has growth failure (grew only 2cm, and gained no weight in an entire year) and remains below the 5%tile for his age (just turned 8 yrs old). He has skin that is hyperelastic(it stretches quite a bit, then goes back in place) on his hands, arms, and feet. His eyes have very dark circles under them and has wrinkly bags under his eyes. His cheeks are wobbly and jowly. Some of his joints are hyperextensible. He has been seen by a pediatric endocrinologist who has ruled out growth hormone disorder. He has been seen by a geneticist who has ruled out Ehlers-Danlos (by skin biopsy) and has ruled out Williams syndrome. He is currently being evaluated for Cutis Laxa, but he does not fit the classic symptoms. He will need another skin biopsy to rule that out. He is a very bright boy. The geneticist is not sure whether we will ever find a diagnosis and I know at some point we will have to put an end to testing if it gets us nowhere and causes our son pain. I just want to be able to tell him if he can have children of his own, and if any of this will cause additional medical problems in the future. If any of this rings a bell, please let me know here or e-mail me. Thank you! SUBJECT: Re:Proteus Syndrome Date: 96-01-31 19:36:00 EST From: MTM1061 I have an 11 1/2 year old son who was born with parts of his body larger than others. When he was five this was diagnosed as Proteus Syndrome. (Elephant Man) Looking for anyone who has experience with such children. My son's left side of the body is larger than the right (including the brain) until mid chest then the largeness switches to the right side then prior to the legs it switches again. (He has a heart murmer) For years all doctors have done is watch and see. My son also has LD and is diagnosed with ADD. He has to have a one inch lift on the outside of his shoe. Drs suggest surgery maybe necessary to stop growth in the larger leg (And two of his fingers) hoping to time it so the other side will catch up. Although accademically school is a strugle my son is a very loving child. Anyone with info or shared experience, please post or Email to MTM1061@aol.com SUBJECT: Re:Proteus Syndrome Date: 96-02-03 09:41:08 EST From: HLC 594 Hi! Are you connected with the Neurofibromatosis groups, Mothers United for Moral Support (MUMS), or the National Organization on Rare Disorders (NORD)? The later two have snail mail networking services which are free of charge. I'm sure you can find other parents to share with and learn from through those sources. Let me know if you need addresses and phone numbers. -Holly SUBJECT: rare disorders Date: 96-02-04 19:47:40 EST From: SH4 WHLS Does anyone have any info on Warner Hoffman syndrome? Please e-mail any info. Thanks sh4whls.aol.com SUBJECT: Coffin-Siris Syndrome Date: 96-02-06 19:55:28 EST From: JUDINIA I am a Special Ed teacher working with a VERY FRUSTRATED family with a 13 year old son diagnosed with Coffin-Siris Syndrome. As far as we know, there are only 30 documented cases (not including this one) in the U.S. There is some info on Coffin-Lowry Syndrome, but not Coffin-Siris Syndrome. If ANYONE has ANYTHING to share on the implications of this syndrome, please please e-mail me at JUDINIA@aol.com ASAP. His family would be so grateful. Thanks for your help in advance, JUDINIA SUBJECT: microcephaly/white matter Date: 96-02-09 10:12:57 EST From: S gretz 17 My friend's son has microcephaly and through MRI is now said to have hypoplasia (undervelopment) of the brain's white matter. Who knows about this? ANy other families out there? Leads on other diagnosis? Please email me. sgretz17 SUBJECT: Re:rare disorders Date: 96-02-09 16:43:00 EST From: HLC 594 Hi! Are you sure of the spelling. I have info on Werdnig-Hoffman Disease that I got by looking under the topic Leukodystrophy. -Holly (HLC 594) SUBJECT: Re:Werdnig-Hoffman Disease Date: 96-02-09 16:46:31 EST From: HLC 594 Hi again! I posted an in correct messsage stating that info on Werdnig-Hoffman can be found by looking under Leukodystrophy. I should have said the information can be found by looking under Spinal Muscular Atrophy. -Holly SUBJECT: Re:Agenesis of Corpus Callos Date: 96-02-09 20:25:20 EST From: JMClow To: SueOTKAM Our 6 yr. old daughter has agenesis of thecorpus callosum. SUBJECT: Pfeiffer Syndrome Date: 96-02-10 02:05:02 EST From: MScurr3710 Looking for information on Pfeiffer Syndrome. I have a student with craniofacial anomalies, nonverbal, limited responses to stimuli. SUBJECT: Re:Pfeiffer Syndrome Date: 96-02-12 18:56:58 EST From: HLC 594 Hi! I do not have specific information on this disorder. Have you tried contacting: AboutFace-USA PO Box 737 Warrington, PA 18976 800-225-3323 AbtFace@aol.com Children's Craniiofacial Association 10210 N Central Expressway Ste 230, LB37 Dallas, TX 75231 800-535-3643 I have three or more additional addresses. Let me know if you are interested. -Holly SUBJECT: fragile x Date: 96-02-13 20:42:23 EST From: KELLI 427 Interested in info on teaching fragile x elementary students in regular classroom SUBJECT: Re:Proteus Syndrome Date: 96-02-20 22:17:31 EST From: MTM1061 " SUBJECT: Re:Proteus Syndrome Date: 96-02-03 09:41:08 EST From: HLC 594 " Yes I'm interested. Please provide information. Thankyou MTM SUBJECT: Re:Tourettes Date: 96-02-24 07:37:10 EST From: JEWADE I am searching for information regarding diagnosis of Tourettes. How would a parent or teacher go about getting a kid checked for tourettes if they began demonstrating some of the associated behaviors/tics? Also any up to date information would be appreciated. Thanks. SUBJECT: Moved: Mobias Date: 96-02-24 20:24:32 EST From: SusanS29 z SUBJECT: Re:504 Date: 96-02-24 12:37:34 EST From: HBoPE Posted on: America Online I WOULD LIKE SOME INFORMATION ABOUT MOBIAS SYNDROME IF ANYONE HAS ANY PLEASE CONTACT HBOPE. THANK YOU SUBJECT: Re:Tourettes Date: 96-02-24 20:25:16 EST From: SusanS29 "I am searching for information regarding diagnosis of Tourettes." A pediatric neurologist would be your best bet. SUBJECT: Re:Moved: Mobias Date: 96-02-25 13:08:05 EST From: HLC 594 Hi! I am a teacher of young children with multiple handicaps. I have a special interest in learning about different disabilities. You can get more information on Moebius by writing: Moebius Syndrome Support Group 39521 Rowen Ct Palmdale, CA 93551 805-267-2570 You can also contact: NORD: National Organization of Rare Disorders. They will provide general information and references for additional information. They also have a networking service that puts families in touch with one another. There is another networking service (free) that puts families in touch with one another. MUMS: Mothers United for Moral Support c/o Julie Gordon 150 Custer Ct. Green Bay, WI 54301-1243 414-336-5333 Hope this helps. Please let me know what you find out and if you need further assistance. -Holly (HLC 594) SUBJECT: Re:Tourettes Date: 96-02-25 13:13:03 EST From: HLC 594 Hi! See my response re Mobias. NORD and MUMS can both give information on Tourettes as well as Moebius. They have snail mail networking services that will put families in touch with one another. For additional info on Tourettes you can contact: Tourette Syndrome Association 42-40 Bell Blvd Bayside, NY 11361-2820 718-224-2999 tourette@ix.netcom.com Hope this is helpful. -Holly (HLC 594) SUBJECT: Werdnig-Hoffman Disease Date: 96-02-25 20:32:19 EST From: SH4 WHLS Does anyone have any information on this disease or Spinal Muscular Atrophy? Or where else on AOL can I look? Any info greatly appreciated. sh4whls SUBJECT: Re:Werdnig-Hoffman Disease Date: 96-02-26 16:26:32 EST From: HLC 594 Hi! You can write to the following: Families of SMA PO Box 196 Libertyville, IL 60048-0196 800-886-1762 If you are a parent or individual with SMA I can give you some addresses for networking services that will put you in touch with others via the US mail. Please let me know what you find out. -Holly (HLC 594) SUBJECT: Megalocornea Syndrome Date: 96-03-02 03:35:49 EST From: GGETTA Our son was diagnosed with a rare disorder called Megalocornea Syndrome when he was 3. He is now 7, and we still do not know much about this condition. We would love to hear from someone who might know a little more than we do. We understand it has not been followed into adulthood. If anyone knows any thing, please contact us via E-Mail. Thanks! SUBJECT: Dandy Walker Syndrome Date: 96-03-03 03:35:12 EST From: WillisFrog I need info on Dandy Walker syndrome...None of the books at the school site have any info. Please leave note or Email WillisFrog. Thanks SUBJECT: Re:Agenesis of Corpus Callos Date: 96-03-06 00:16:04 EST From: LarryL1064 I'm a Preschool Psychologist serving 3-5 year olds. My past experience has been in K-12. In the almost 5 years that I've been with preschool, we have seen 5 cases of diagnosis of Agensis of the Corpus Callosum. My understanding with the first child we had is that he would probably be the only one I'd seen in my career. Now that I've seen 4 others, I'm wondering do we have a majorly flawed MRI devise here or does this condition exist more often that has been thought in the past. I have found few answers to my question. Any help would be great, plus any prognosis and/or further information. Thanks, Barb SUBJECT: Werdnig-Hoffman Disease Date: 96-03-07 12:58:18 EST From: Ratatat Moved from another folder: SUBJECT: Help Date: 96-03-06 18:29:55 EST From: DsneyFreak I need any information you have. I would appreciate your help. If you know of any resources, please let me know. SUBJECT: Childhood Disintegratvie Dis Date: 96-03-08 12:16:44 EST From: EBrunning Hi, Has anyone heard/encountered this disorder?? If you have any have any info. on it I'd love to know. Thanks. SUBJECT: Re:Werdnig-Hoffman Disease Date: 96-03-09 19:45:45 EST From: HLC 594 Hi! I suggest you contact: Families of SMA PO Box 196 Libertyville, IL 60048-0196 800-866-1762 Best of luck to you and let me know what you find out. If you are interested in snail mail (US mail) networking I may have some addresses for you. Take care! -Holly (HLC 594) SUBJECT: Tricolomania - Hair Pulling Date: 96-03-09 20:12:33 EST From: Obag22z Please send any info. on this rare disorder. SUBJECT: Re:Tricolomania - Hair Pulli Date: 96-03-09 22:30:04 EST From: Ratatat << SUBJECT: Tricolomania - Hair Pulling Date: 96-03-09 20:12:33 EST From: Obag22z Please send any info. on this rare disorder.>> Trich (it's nickname) is one of the manifestations of Obsessive Compulsive Disorder. Some people pull hair, sometimes symetrically; others count, some check and re-check things, and yet others wash. Some do a mixture of these behaviors. OCD is a treatable disorder with medication and some intensive behavior modification therapy. I would suggest that you find the "primer" on OCD by Judith Rapoport, "The Boy Who Couldn't Stop Washing." SUBJECT: mitochondrial disease Date: 96-03-15 16:06:21 EST From: HOMEY4NYG Looking for info - alternative therapies, diets, prognosis, etc. Working with an 18 yr. old recently diagnosed. Mom and SLP looking for help!!! SUBJECT: Re:Hyperlexia Date: 96-03-15 22:22:54 EST From: PECKFH I don't know of any resources off hand, but I have a child on my caseload who has hyperlexia. We've had a lot of success using his reading skills to support his auditory comprehension. While he still reads many things he does not understand, he uses a written schedule to go through the school day. During classroom groups a teacher writes down pertinent information for him and also writes questions for him. When he is upset or confused, written notes paired with conversation help him calm down. At the age of 7 he is beginning to learn to carry and use a notebook which has his schedule, pages for notetaking, and scrap paper to help him amuse himself during downtime. Print cues also help him with social language skills such as turn taking. Bess, SLP SUBJECT: Re:mitochondrial disease Date: 96-03-16 07:50:37 EST From: Ratatat <> You might try searching in MEDLINE, a database of medical research articles. I believe you can get their using Keyword: Medline SUBJECT: Re:mitochondrial disease Date: 96-03-17 21:00:04 EST From: HOMEY4NYG Ratatatat??? Thanks for responding! I'll look into Medline, but I'm tired of finding DNA and genetics studies that neither the Mom nor I can understand, and just want to get some answers about what we can DO. We know the kid's got it, where do we go now? SUBJECT: Smith-Magenis Syndrome Date: 96-03-20 16:55:23 EST From: DsneyFreak Help! I am searching for any information on Smith-Magenis Syndrome. It is realively new and there isn't much available yet. If anyone knows where I can locate, or has any, information, please e-mail me. DsneyFreak SUBJECT: Re:Landau - Klefner Date: 96-03-27 22:59:12 EST From: TeachJones Go to a book called The Cognitive Neuropsychology of Language ed. by Max Colthert, G. Sartori and R. Job. It is a meaty and very technical book for cognitive neurolinguistic types. However, look for article 15, Phonemic Deafness in Infancy and Acquisition of Written Language. It is not an easy read but if you need lots of information, this is good. SUBJECT: Verbal Apraxia Date: 96-03-31 17:28:29 EST From: Jssspeech HELP! I'm a Speech-Language Pathologist in the public schools. One of my students has severe verbal apraxia. Does anyone know of any experts in the Boston area who can help? Thanks Jssspeech@aol.com SUBJECT: Re:PRADER WILLI Syndrome Date: 96-04-11 15:33:16 EST From: BBVols96 Am experienced teacher(22 yrs.) with experience teaching and developing profiles of Prader-Willi children..Do IEP evaluations and advocacy.Would like to gather info for article and research.Interested.please e-mail SUBJECT: Sturge-Weber Syndrome Date: 96-04-11 19:12:19 EST From: SLPWendy I'm an SLP working with a child with Sturge-Weber - the info sent by the SW Foundation was not much help - seems many of these kids exhibit only the port-wine stain and maybe some seizure activity. The child I work with is non-verbal, lots of "strange" behaviors - humming, rocking, yelling, is becoming more and more ataxic, flapping arms,etc. Have tried FC with some success, but just don't know where to go with this. Any suggestions???? Wendy aka SLPWendy SUBJECT: RECOMBINANT 8 SYNDROME Date: 96-04-15 23:48:51 EST From: Wlirwin Our son has Recombinant 8 Syndrome which is a very rare disorder. We would love to find someone else who may be able to provide information regarding this syndrome. If you have any information please send us a note. Thanks! Wlirwin SUBJECT: Diaphragmatic Hernia & Hydro Date: 96-04-16 18:58:30 EST From: Mamafrann I have a one year old son who was born with Congenital Diaphragmatic Hernia and then developed hydrocephalus. I am interested in communicating with parents of children with one or both of these conditions. My son Ryan is doing well but continues to have new issues arise. He is fed with a g-tube exclusively now and has an oral aversion, so feeding him orally is the next area of focus. He recently had surgery because the bones in his skull had fused prematurely. This surgery may need redoing as some of the bones have shifted since surgery. SUBJECT: Asperger's Syndrome Date: 96-04-18 11:38:31 EST From: MNCar Would like information as to scholarly research on Asperger's Syndrome. What is it? What is its incidence? Etiology, etc.? SUBJECT: Re:Strauss Syndrome Date: 96-04-21 14:28:43 EST From: RBurman634 Have a 7 yr old son diagnosed with Strauss Syndrome. Would appreciate info. SUBJECT: Re:Diaphragmatic Hernia & Hy Date: 96-05-04 13:43:18 EST From: Amos McD Hi! My son was born 11 weeks early with hypoplastic lungs due to lack of amniotic fluid during most of the pregnancy. He also needed a G-tube at age 1 year, finally started eating by mouth at age 3-1/2 due to oral sensitivity. Now 8 years old. Would be happy to share any info on him that may help you and your son. email me at AmosMcD@aol.com Amy SUBJECT: Re:Tuberous Sclerosis Date: 96-05-11 19:57:23 EST From: MFZK I have a son with TS. You can contact the National Tuberous Sclerosis Association on the internet. Look up NTSA. Lots of information there. You can also e-mail me, and I will be happy to correspond with you, sometimes you just need someone who is going thru the same thing... SUBJECT: Re:Asperger's Syndrome Date: 96-05-13 20:43:24 EST From: SYNC97 I've been searching and searching for references to Asperger's. My son's school psychologist told me today she thinks he shows signs of this syndrome. Can you tell me anything about it or recommend any information resources? We're bringing him to a psychiatrist soon, but I would love to start learning about his condition right away. Any replies would be greatly appreciated! SUBJECT: peter's anomaly Date: 96-05-22 22:44:10 EST From: AMccall104 Looking for peter's anomaly or reiger's syndrome. Inherited from my father and passed on to my daughter. Experiences and genetic tendencies? Thanks, Kris SUBJECT: 13Q- Syndrome Date: 96-06-06 22:11:41 EST From: DavidGodoy My brother's daughter Rebecca has been diagnosed with this uncommon Syndrome whose symptoms are still being studied by a dedicated group at Columbia University, NYC. It's the deletion of part of the 13th Chromosome. In case you'd like to contact my brother and share information e-mail him at DANIEL_GODOY@VNET.IBM.COM. Basically Rebecca will be mentally retarded and will grow very little - and she may have other problems. Thanks, SUBJECT: lissencephaly Date: 96-06-07 18:54:45 EST From: PMJ 48 I had a preschool age child in my class for almost 2 years. Does anyone have information on this condition? Thanks. Paula SUBJECT: Re:lissencephaly Date: 96-06-07 21:26:20 EST From: MJReynolds My 20 month old daughter was diagnosed with Lissencephaly at 4 months of age. My daughter has significant developmental delays, and until recently a seizure disorder which is now under control thanks to the ketogenic diet. There is a national organization for this condition, for information you can contact Lissencephaly Network c/o Dianna Fitzgerald, 716 Autumn Ridge Lane Ft. Wayne, IN 46804. Email DiannaFitz@aol.com, phone number (219)432-4310. I would also be willing to talk to you to give you my experiences with this disorder. My Email address is MJReynolds@aol.com. Good Luck! SUBJECT: Turner's Syndrome Date: 96-06-10 21:12:57 EST From: Emlee I have a 5 year old son diagnosed with Turner's. If anyone knows of an adult male with Turner's I would really like to trade info and get some insights. Please E-Mail me. Thanks! SUBJECT: Re:Asperger's Syndrome Date: 96-06-14 08:36:36 EST From: CheKrei There's a web page devoted to Asperger's - http://www.udel.edu/bkirby/asperger/ SUBJECT: Scotopic sensitivity syndrom Date: 96-06-17 15:44:31 EST From: Plast I am doing a report in a college class researching this topic and have no information yet. ANY information is good information! Please post if you can help. My address is darwin.elmer@jadebbs.com Thanks! SUBJECT: Re:Scotopic sensitivity syndro Date: 96-06-19 00:58:58 EST From: SusanS29 "ANY information is good information! " This just isn't true. I do hope your college instructors don't agree with it. SUBJECT: Potter's Date: 96-06-19 19:02:22 EST From: Janetberg I have a student with Potter's syndrome or disease. He is four years old. Does anyone know much about this problem and his prognosis? He has lung problems, language delays, no c.p., and is mildly delayed. SUBJECT: Re:Scotopic sensitivity syndro Date: 96-06-20 19:31:46 EST From: HLC 594 I bought a book in the local bookstore called Reading By the Colors by Irlen. It describes the syndrome and remediation. Another name for the syndrome is Irlen. -Holly SUBJECT: Re:Scotopic sensitivity syndro Date: 96-06-22 16:18:17 EST From: SusanS29 I think people should know that the Irlen approach is unsubstantiated at this point by impirical, impartial research. It's expensive and unproven except by those making money from it. I'm not saying there's nothing to it, but it hasn't yet withstood the scrutiny of the scientific community. so know what you're getting into. SUBJECT: Re:Potter's Date: 96-06-25 10:13:28 EST From: HLC 594 Hi! Contact: National Potter Syndrome Support Group Evy Wright 3501 Curry Lane #808 Abilene, TX 79606 915-692-0813 Best of luck and do let me know what you find out! -Holly SUBJECT: Re:Potter's Date: 96-06-26 19:08:54 EST From: Janetberg Thank you for the information. I will write to them to get information. SUBJECT: Prader-Willi Syndrome Date: 96-06-28 13:18:56 EST From: My5Boyz I have an 19 month old son with PWS, and am looking for other families with young PWS children to correspond with I can be reached via e-mail at My5Boyz@aol.com. Thank You, Vicki Knopf SUBJECT: Re:Scotopic sensitivity synd Date: 96-07-02 10:22:41 EST From: Ratatat <> The only information you are likely to find is from the people who "invented" this syndrome. I doubt seriously that if you check MEDLINE (Keyword: PEN) you will find any true scientific information on this "syndrom". SUBJECT: seizure-like behavior Date: 96-07-23 22:10:38 EST From: Sedsdc My nephew has be displaying strange behaviors since he was six months old. He is now nine years oldand has not grown out of it as the doctor predicted. This is a description of what he does. His hands grip and relax rapidly and his feet flex and relax. At times he appears to be holding his breath and there is often some sort of facial movements that go along with it. At first glance one might think that this behavior is voluntary and thus controllable but it happens so often that nobody could keep it up for that long. It occurs when he is visually stimulated, excited, watching TV, playing nintendo and driving in the car. He can stop if he notices that he is being stared at but he seems to just change the focus of his energy...ie rub his eyes; lay down and try to sleep. He has had a sleep-deprived EEG and it came back as "normal brain wave activity". The child has some learning disabilities-unspecified-slow reader, clumsy, not taking any meds. If you have any suggestions, please let me know. Thanks!! SUBJECT: Info search on Hunan Syndrom Date: 96-07-26 21:16:20 EST From: Ulfarson My wife is a special ed. teacher and is seeking information on Hunan Syndrome. I'm not certain of its correct spelling but if you have a good info. source, please let us know. Thanks. SUBJECT: Cornelia de Lange Syndrome Date: 96-07-27 11:58:38 EST From: BoomMcM I'm the teacher of a 4 year old boy w/CdLS. He's been with me for a year in a self-contained special ed Pre-K class. He made tremendous strides in communication. He uses sign language, communication boards and recently has been given a digivox, which has voice output. Here's my problem. The student's attention span had increased substantially and behavoir was improved (inappropriate peer interaction, perseverative behaviors, non-compliance, etc). Having returned to summer school from a 2 week break, I feel like I'm starting over again! Perseverative behaviors are back, non-compliance has increased and most concerning - He is BITING! We find that he usually bites if he does not get his own way or if something is bothering him. He has bitten every adult working with him (including speech, occupational and physical therapists) and bit another student the other day. Removing him from the situation is ineffective and I'm seeking any suggestions that any of you may have. The parents are great. They work very closely with us and have always provided information that is available. We are all concerned - especially me, as we are going to have another 2 week break soon. SUBJECT: Re:Info search on Hunan Syndro Date: 96-07-27 18:09:30 EST From: HLC 594 Hi! Could you check on the spelling and/or give a brief description and I will try to help you out. -Holly SUBJECT: Re: info on Hunan Syndrome Date: 96-07-28 08:34:27 EST From: BoomMcM Are you sure that it's Hunan and not Noonan Syndrome? SUBJECT: Edwards Syndrome trisome 18 Date: 96-07-29 00:36:35 EST From: TRUE82 We recently had a child born with this disorder. We lost our son but are interested to know more about it. We would like to hear from those with surviving children. Email True82 SUBJECT: Re:Info search on Hunan Syndro Date: 96-07-30 07:59:03 EST From: HLC 594 Hi! If the syndrome you are looking for is NOONAN you can write: Noonan Syndrome Society c/o Susan Espinoza 128 Pine Ave. San Jose, CA 95125 408-723-5188 -Holly SUBJECT: Re:Edwards Syndrome trisome 18 Date: 96-07-30 08:05:35 EST From: HLC 594 Hi! I am so very sorry to hear about the loss of your child. I am not a parent but a teacher. Many years ago I was teaching classes for the siblings of the children that attended the special school where I worked. There was a brother and sister in the group that had a sister with Trisomy. The older sister went with us to a State Conference to present on the issue of siblings. She did so despite the fact her sister died just before the conference. For more information I suggest you contact: SOFT: Support Organization for Trisomy 18, 13 and Related Disorders c/o Barb Van Herreweghe 2962 S. Union Street Rochester, NY 14624 800-716-7638 You will find alot of support and information there. You might also want to contact: Chromosome 18 Registry and Research Society 6302 Fox Head San Antonion, TX 78247 210-657-4968 Take gentle care! -Holly SUBJECT: Re:PRADER WILLI Syndrome Date: 96-07-30 13:39:40 EST From: Benhaven TURN94: I'd love to see your mass of info on Prader-Willi. We work with a young woman with Prader-Willi. Please send me info at Benhaven. Thanks! SUBJECT: Cofin Lowry Syndorme Date: 96-08-03 19:18:42 EST From: Mhoonshot I'm looking for education programs for my son. He has a severe hearing loss and developmental delays. Any info on education strategy for CL Syndrome or other syndrome children will help. Also, seeking specific programs nationwide. Please e-mail. SUBJECT: Tourette Syndrome Chat Date: 96-08-06 02:45:19 EST From: JSALT56 I have just found this board and noticed some postings regarding tourette syndrome. I just wanted to invite everybody to the tourette syndrome chats. There is one every Wednesday at 10:00 pm EASTERN time in private room ts. E-mail jsalt56 for more information. Anyone with a legitimate interest in tourette's is welcome. --jenn SUBJECT: Re:tourette syndrome Date: 96-08-06 03:45:30 EST From: JSALT56 I just saw your posting on the rare disorders message board in pin. Are you still looking for contact from adults with ts? If so, email me. I have the disorder and am 23 years old. How old are your children? --Jenn SUBJECT: Re:RETT Syndrome Date: 96-08-06 04:55:03 EST From: MOUI346393 my daughters name is "Mikal" she is said to have rett. Ayn info would be great! I feel like a dry sponge, just can't fine enough on this terrible syndrome. thanks, Julie SUBJECT: Re:Cofin Lowry Syndorme Date: 96-08-08 16:34:55 EST From: HLC 594 Coffin-Lowry Syndrome Foundation 13827 196th Ave SE Renton, WA 98059 206-204-9176 -Holly SUBJECT: Re:RETT Syndrome Date: 96-08-08 16:37:27 EST From: HLC 594 Hi! Contact: International Rett Syndrome Association 9121 Piscataway Rd, Ste 28 Clinton, MD 20735 800-818-7388 -Holly SUBJECT: agraphia Date: 96-08-15 18:21:43 EST From: Krizz10 I have a student with agraphia. I am looking for advice and information on this learning disability. What kinds of accomodations should I make in my classroom? Please help. SUBJECT: Rare Disorders Date: 96-08-18 19:37:37 EST From: TuffMan75 Never had heard of Turner's Syndrome until I had a student this year (last week) in first grade with it. Anyone know of this rare condition? Tuffman75 SUBJECT: Soto Syndrome Date: 96-08-21 08:53:40 EST From: ShelleyHL I am looking for information regarding Soto Syndrome, particularly general characteristics and educational implications. Also, I's like some good sources for information for parents, teachers and parents regarding this disability. Email at ShelleyHL or leave a message here. Thanks ( I read my email more often!) SUBJECT: Werdnig Hoffman Disease(SMA) Date: 96-08-21 15:22:28 EST From: SPCHRGM I am working with a seven year old with Werdnig Hoffma. He is using an apple computer with a kenex switch. The trouble is, the darned pressure switch is forever malfunctioning and this is extremely frustrating both for myself and the child. Has anyone ever worked with1)Werdnig Hoffman and augmentative or2)Pressure sensitive switches for children with extremely limited movement(second finger of left hand can move upward slightly)...would appreciate any suggestions...augmenative is a hard nut to crack at times....SPCHRGM@aol.com SUBJECT: Robinow's Syndrome Date: 96-08-21 22:13:33 EST From: Zooanim123 Anyone one with information about this syndrome please e-mail me or post info. Thanks, zooanim123 SUBJECT: Re:Rare Disorders Date: 96-08-25 09:52:21 EST From: HLC 594 Hi! For more information you can contact: Turner's Syndrome Society of the US 15500 Wayzata Blvd. 811 12 Oak Ctr Wayzata, MN 55391 612-475-9944 There is also a Canadian Grp. Let me know what you find out. I teach children with multiple handicaps in FL. -Holly SUBJECT: Re:Soto Syndrome Date: 96-08-25 09:54:15 EST From: HLC 594 Hi! For more information contact: Sotos Syndrome USA Support Association Three Danada Sq. E #325 Wheaton, IL. 60187 708-682-8815 Best of luck and do let me know what you find out! -Holly SUBJECT: Re:Robinow's Syndrome Date: 96-08-25 09:56:30 EST From: HLC 594 Hi! I recommend you contact: Robinow Syndrome Support Group c/o Karla M. Kruger 15955 Uplander St NW Andover, MN 55304-2501 612-434-1152 I'd be interested to hear what you find out! -Holly SUBJECT: Prune Belly syndrome Date: 96-08-25 15:54:49 EST From: Scoongie Are there any teachers that have taught a child with Prune Belly Syndrome. If so please email me. Renee SUBJECT: Re:Prune Belly syndrome Date: 96-08-27 18:05:30 EST From: HLC 594 Hi! Have you contacted: Prune Belly Syndrome Network 1005 E. Carver Road Tempe, AZ 85284 602-838-9006 -Holly SUBJECT: Beckwith-Weidner Syndrome Date: 96-09-07 00:16:01 EST From: User422376 I am a kindgergarten techer looking for assistance with a boy who has Beckwith Weidner Syndrome. If any of you can help me with assisting him, suggestions as to what it is etc..., please E-mail me at 422376 @ aol. com. He's been in school two years and is acting approximately at the age of a two year old, although his age is actually 5., He needs help soon, please help me help him. SUBJECT: Re:Beckwith-Weidner Syndrome Date: 96-09-07 20:04:23 EST From: HLC 594 Hi! I suggest you contact the following: Beckwith-Wiedemann Support Network 3206 Braeburn Circle Ann Arbor, MI 48108 800-837-2976 Please let me know what you find out! -Holly SUBJECT: orofacialdigital syn type 1 Date: 96-09-08 22:24:33 EST From: AkRhodey My friend K.P. would like to connect with any parents whose child may have this. She has a three yr old daughter with and would love to hear from parents! reach her at akrhodey or TLVanS@aol.com thankyou! SUBJECT: Fragile X Syndrome Date: 96-09-11 17:06:40 EST From: DMos372032 Does anyone have info on Fragile X Syndrome and the best techniques to use with them in regards to out of "control" behaviors in the classroom? Any resources would be helpful!! Thx Mucho!! Denise SUBJECT: Fragile X Syndrome Date: 96-09-11 17:43:52 EST From: DMos372032 desperate to find any info. and techniques that work best with these kids!! I thank you!! DMos(Denise) SUBJECT: HELP!rare syndrome ? Date: 96-09-12 00:12:57 EST From: Edunut I have a student in the first grade who is currently growing facial hair(mustache) and has webbed feet. He has received special education services since early childhood. Parents have 2 normal older siblings. Cognitively he has scatter of normal to slow learner range. There are behavioral isssues as well. Any information you may have to help us diagnose syndrome would be greatly appreciated. He is currently being serviced in a Resource setting. I'm concerned about the long term programming for this youngster. Any info you may have reguarding this syndrome would be greatly appreciated. Please email me asap at Edunut@aol.com. Thanks for your help! SUBJECT: Re:Landau - Klefner Date: 96-09-12 22:35:09 EST From: User422376 Once worked as a one on one aide with a child who had this. It was explained to me as "If you picture the brain, it can go off like an earthquake at any moment." This was whether you said "Hi Katie" or No. She used to throw desks etc... How old is the child you are working with? This girl I worked with spent 6 years in a school for the severely retarded. She was far from it. she just could not communicate. She had previously been speaking to the age of 3 when she developed LK. I used Sign Language with her and once she realized she could communicate, she was thrilled and her behavior became much better! My bruises subsided. Make a communication book of pictures this child will know - everything from food to friends and family. Also teach him/her the Sign for these things. Your life will be much easier Where do you teach? I lost track of Katie (she moved to California!) I saw her before she left though and she was making soooooooooooooooooomuch progress. It's a lot of work, a lot of tears, a lot of pain, but worth the results. Stick with it!! Good Luck!!! I'm in Mass SUBJECT: Re:Beckwith-Weidner Syndrome Date: 96-09-16 23:03:20 EST From: User422376 Lots to tell you. Did receive a pamphlet today. Many medical terms. I still have an uncertainty as to what the Syndrome is and how to help him (boy in class) Have you been able to obtain any other information other than medical??? Also - do you know of anyone who has had past successes with another disorder- landau Klefner Syndrome? Thanks for any info again. My E-mail is 422376 @ aol.com Team meeting today, I suggested having a one on one aide for boy in class. They (admin) suggested a "buddy" system in which I would pair him with another 5 year old to teach them. I did not agree at all with that. Do you have any suggestions regarding advocates for this boy's MOm? SUBJECT: RECOMBINANT 8 SYNDROME Date: 96-09-18 00:13:05 EST From: Wlirwin Does anyone have any information on recombinant 8 syndrome or any disorder associated with the 8th chromosome? My son has the syndrome and we are trying to link up with anyone who may have some information. Thank you. SUBJECT: Re:Beckwith-Weidner Syndrome Date: 96-09-18 15:37:25 EST From: HLC 594 Hi! I have not worked with children with B-W Syndrome. I do have a student with LKS in my class at the moment. I agree with you I would be hesitent to rely on the buddy system for the child in question. I would think it would be better to have the adult assistance and maybe the adult could help the two children establish a "buddy" relationship. -Holly SUBJECT: Re:Beckwith-Weidner Syndrome Date: 96-09-18 16:49:20 EST From: SusanS29 "Team meeting today, I suggested having a one on one aide for boy in class. They (admin) suggested a "buddy" system in which I would pair him with another 5 year old to teach them. " Are you saying the school wants to use one aide for two students in the same class? That might work well, and if it does might actually be *better* for the child (the best intervention is the minimum necessary to do the job. Any more than necessary often inhibits personal development). SUBJECT: Re:Beckwith-Weidner Syndrome Date: 96-09-18 21:31:33 EST From: User422376 Do you have any further information on Landau Klefner Syndrome, its cause and/or any materials I might be able to read through? I once worked with a child who had LKS and she really was successful in learning to communicate through Sign Language. At the time, it was my first year as a teacher's aide and the two of us learned together. Do you know if there have been any cases where LKS kids have "come out of it" and have begun to speak verbally again? I'd love to know. I lost track of this girl as she moved to California. In England this year, I did see a girl who would have been approximately the same age, looked very much like her and she was speaking. Unfortunately, I did not want to embarrass this girl and got off the boat without finding out if it was she. She was speaking so well, I was hoping the best. Thank you for agreeing with me. I did like your idea about and "adult" then possibly a "friend" type buddy. I still feel an adult must be the one to help him and of course, I feel he should have friends but not friends at 5 years old who are the sole teachers of this child. It's too big a responsibility and they would not be ready for it. It amazes me she even suggested it!!! Please E-mail me at 422376n @ aol.com should you have any other suggestions, especially with LKS. Thanks. Pl SUBJECT: Re:Beckwith-Weidner Syndrome Date: 96-09-18 21:35:01 EST From: User422376 No, that's not what I'm saying. The team's "solution" was to use another five year old as an "aide" rather than hire a one on one "adult" aide for this boy. As forhaving an "aide" assist two children that would be great as a buddy system. I'm still battling the system to get this little guy the help he needs. It's also coming down to $$$$$ once again too. SUBJECT: Tetrasomy x or XXXX Date: 96-09-19 15:35:58 EST From: CDavarich I am looking for some help! I have a 12 year old daughter diagnosed with this syndrome when she was 3. She has been in special ed ever since. Delays manifest themselves primarily in language delay (expressive age level 6 and recpetive age level 8). She is in a self-contained classroom of 13 children. She functions mid range with the other kids in the class. Only reading and math are taught along with some life skills. She does best with non-verbal programs as language is a major difficulty. She acannot think on the abstract and does better with concrete, hands-on materials. Her reading comprehension is non-existant. She can read at a mid third grade level but absorbs nothing. We have had independent testing done as we are unhappy with the school's plan and lack of attention to her disabilities. The independent tester suggested the Wilson Program for a reading program. I would like some info on this. I would also like some suggestions for computer programs for her. She loves the computer and I know she could benefit greatly from the right programs. Keyboard, Math, Reading?? Are they entertaining as well as educational. She suffers from ADHD as a result of her syndrome so I need something that will keep her attention! Thanks to all!! SUBJECT: Re:Tourettes Date: 96-09-28 17:55:43 EST From: Teach948 I would also like any information on "Tourettes" as I have a new boy with tourette-like behaviors (age 7 in second grade.) He is very bright, but his uncontrollable flappings, singing out and tapping impacts greatly on his work output and ability to focus. SUBJECT: Beckwith~Weidemann Date: 96-09-28 23:15:41 EST From: User422376 Does anyone know whether this can be controlled by diet?? Are there are behavioral methods used to calm children with this disorder down? Boy in my class likes to run, jump off tables and crawl under them. Help, please. SUBJECT: Retts Syndrome Date: 96-09-29 15:29:20 EST From: BBQUILTS There is a mailing list dealing with Rett's. Does anyone know how to subscribe? SUBJECT: TRANSLOCATION Date: 96-09-29 20:19:29 EST From: ARicha2321 Anyone have any info on translocation???? I have a friend that jsut had a baby with this disorder and we need info. Any help would be appreciated. Please email ARICHA2321. Thanks in advance. SUBJECT: Batten's Disease Date: 96-10-01 22:36:18 EST From: RonnieBeh Looking to get in touch with anyone (especially teachers) who have had experience with students who have Batten's disease. Most info seems to be medical; could use some help in the classroom. SUBJECT: Agenesis of the Corpus Callo Date: 96-10-07 18:35:04 EST From: Topdown42 I currently have a child on my caseload with this diagnosis. We tried mainstreaming for the entire day with the help of an assistant. The child was having trouble keeping up with the class and needed frequent "shut down" periods from the stimulation. We are now trying half day in my resource room for intense instruction and half day in the regular ed. room. Does anyone have information on educational practices for children with ACC? Will this child be able to return to the mainstream full time in the future? Any help would be appreciated. Lisa SUBJECT: Re:Werdnig Hoffman Disease(S Date: 96-10-10 20:51:17 EST From: MonSolo Three years ago I had a student with Werdnig Hoffman Disease. He could move his head from side to side and one finger on his left hand. Using a Dynavox witha laser scanner on his head, he was able to communicate quite well. Of course, he was slow, but usually, he got his message across. This young man is now 18. SUBJECT: Klinefelter's syndrome Date: 96-10-12 12:08:25 EST From: LIN62 I am a speech pathologist who recently began working with a child with Klinefelter's...anyone have any info???? especially as it relates to language development in a five year old. SUBJECT: Re:Klinefelter's syndrome Date: 96-10-13 14:29:17 EST From: LIN62 Feel free to e-mail me at LIN62 @AOL....I am dealing with a nervous parent who is searching for answers to this recent diagnosis of Klinefelters SUBJECT: Smith-Magenis Date: 96-10-20 15:00:03 EST From: CATAPIA I am working with a 5 year old child with this genetic disorder. I am interested in any information or in corresponding with another teacher with experience with Smith-Magenis. Thanks SUBJECT: Monosomy Q13 Date: 96-10-20 16:55:21 EST From: KLETTER Hello! I am a teacher of the hearing impaired. Right now, I have a class of HI preschoolers. I will be moving up with them throughout their education. One of my students is a tough case. He has Monosomy Q13. A very rare disorder of the chromosomes. He has no language and several severe behavior problems. My questions are: What is the life expectancy of people with this disorder? What are possible long term goals for him? What advice do you have? He has not shown me that he has retained anything from the three previous years of being in this program. I am a first year teacher; the first time working with him. My coordinator and I have contacted the only genetic expert in town. She only supplied us with very technical research that did not help at all. Please, I need input on how best to serve this child! Thank-You! Kristi Etter SUBJECT: auditory processing Date: 96-10-21 22:45:07 EST From: Legacy23 I have astudent I work with I suspect of not proccessing things correctly. How can I find more info for the parents on this disability.. SUBJECT: dyssemia Date: 96-10-22 18:20:47 EST From: SusanStout i am looking for any information about this disorder.Thanks SUBJECT: Duane's Syndrome Date: 96-11-02 07:34:35 EST From: Bmgcagmpg I have a student with Duane's Syndrome. Does anybody have any information about the educational implications of Duane's Syndrome and the frequency with which Duan'es Syndrome occurs in combination with learning disabilities perhaps unrelated to the basic visual difficulties? SUBJECT: Re:dyssemia Date: 96-11-03 19:28:06 EST From: GTGATOR I too am looking for any information on this subject. A collegue of mine saw something about it on a talk show and thought a child in our school might have it. SUBJECT: Re:auditory processing Date: 96-11-04 19:33:32 EST From: ADoman4780 Read the article on Samonas Sound Therapy at the NACD Hpomepage The address is http:/www.nacd.org SUBJECT: Vactral Syndrom Date: 96-11-11 23:57:38 EST From: RuningFox Anyone with info on Vactral Syndrom, we have an adopted son with this and would like more info and ideas for school programs. RuningFox@aol.com SUBJECT: Delayed Mylinization Date: 96-11-16 13:25:45 EST From: TLVAIL Can anyone tell me anything about or where to get information on delayed mylinization? I'm not sure I'm even spelling it right and I can't find anything on the www. I've also heard it called hypomylinization. Apparently it's a condition where the mylin on the nerves wasn't present at birth and it's forming over time. When all the mylin is present, will the child be "normal"? He's 31/2 now and has just learned to walk, is not talking, pointing to pictures, using a toilet etc. I really need to know the progression of this disorder. Does anyone know about the best types of treatment? Medically, educationally? SUBJECT: Re:Moebus Date: 96-11-16 18:17:39 EST From: Dreamctch7 I have a friend who has a 19 year old son with Moebus syndrome. I have been his job coach and employment advocate for the past 4 years. I would love to talk with you E-mail me at Dreamctch7@AOL SUBJECT: Trisomy 13 Date: 96-11-16 18:24:28 EST From: Dreamctch7 I am looking for any educational information on students with trosomy 13. Best practices in teaching, etc. SUBJECT: Cornelia de Lange Syndrome Date: 96-11-16 23:51:16 EST From: BoomMcM HELP! I've been working with a CdLS student for over a year and I am very concerned. He has made great gains in communication. However, he is still exhibiting severe perseverative behaviors and self-stim behaviors. He is 4 years old, uses sign language and communication boards (including a voice output device) effectively. He seems to tune us out and does not relate to peers. Any suggestions or advice would be greatly appreciated. SUBJECT: Mitochondrial Disease Date: 96-11-25 20:40:25 EST From: MEJ 12859 I'm working with a student that has Mitochondrial Disease. Would like to hear from anyone with info on this disease. Also would like to know what to expect in the future. SUBJECT: Re:Rubinstein-Taybi Syndrome Date: 96-11-25 21:23:08 EST From: Pjh1443 Hi! Hopefully you are still interested in on-line communication. Our son, Josh, age 8, on Thursday, quite possibly has RTS. We currently are seeking clinical diagnosis with Dr. Rubinstein. We, my husband Kevin and I, would really appreciate any communication with other parents who may share similar stories. Please respond. Thanks, Pam Harris SUBJECT: Aarskog Syndrome Date: 96-11-30 00:40:01 EST From: Coriand I'm new to aol, and just wonder if there might be someone out there with an Aarskog child. I have a 7year old boy with it, and am interested in any information I can get. Help if you can. Thanx, Coriand SUBJECT: Munchouser's Syndrome Date: 96-12-09 11:21:07 EST From: TUUULA Looking for information on this (Syndrome?) Iknow it has something to do with always being ill. Many specialists is there really an illness? Thanks Tuuula SUBJECT: Re:Munchouser's Syndrome Date: 96-12-09 19:56:53 EST From: Coriand Could you mean Munchousens By Proxy. It is a mental illness usually affecting adults. It has been talked of alot lately. In fact, I believe it was Primetime Live that did a segment on it about 6 months ago. It has to do with making your child ill in order to get attention. That's all I know about it, hope it helps. SUBJECT: Re:Munchouser's Syndrome Date: 96-12-10 09:18:37 EST From: SusanS29 "Could you mean Munchousens By Proxy. It is a mental illness usually affecting adults. It has been talked of alot lately. In fact, I believe it was Primetime Live that did a segment on it about 6 months ago. It has to do with making your child ill in order to get attention. " This is a very rare, but severe mental illness of a parent (almost always a mother, although the original person was a male -- but he made *himself* sick). When the child is made sick, it's almost always the mother who does it. These adults get very sophisticated about diagnostic processes, and find ways to give their children strange and hard-to-diagnose clusters of symptoms. Unfortunately for the children, the resulting treatment often involves highly invasive treatments such as exploratory surgery (which reveals nothing, bringing the parent yet more attention.) When it's discovered, the result is classified as child abuse and the child almost always removed from the home. SUBJECT: Re:Munchouser's Syndrome Date: 96-12-10 19:14:28 EST From: R u Niz Munchausen--the individual fakes illnesses to get attention. Munchausen by Proxy--the individual uses someone else--often a child--for the attention--claiming the victim needs medical attention. SUBJECT: hyperlexia Date: 96-12-20 21:53:55 EST From: MFlem46724 Our son is four and a half. He has no medical diagnosis as yet, however he has been receiving speech therapy, OT, PT etc. for "developmental delay" since he was 2. He was (and to a certain extent still is) very sensitive to sounds and is easily distracted. We have had a series of developmental, physical tests but no conclusive cause as yet. We have not had genetic testing but have heard a variety of exotic (but unlikely ) genetic conditions thrown out. He has teachers, therapists etc. stumped and everyone says he is a very "unique" case. We have also heard that neurologically he seems to be "wired" a little differently. We read some of the notes on Hyperlexia but couldn't find a definition. Some of the symptoms sound so similar. could you give us more information? m Flem 46724 SUBJECT: Re:Stickler's Syndrome Date: 96-12-23 14:23:23 EST From: Agullette I am a teacher of deaf/hard of hearing and have a student with stickler's due to her hearing loss. With my student that happens to be her primary disability, although feeding was an issue earlier but not as much now. Take a look at entrance criteria for hard of hearing or vision and see if he would qualify. Good luck. SUBJECT: Re:peter's anomaly Date: 96-12-23 14:32:27 EST From: Agullette I'm a teacher of visually impaired students and have a student with Peter's anamoly. She has had multiple corneal transplants to preserve her vision. She was born with malformed cornea originally. Glaucoma is also an issue as well as cataracts. Contact your local library and have them do a search on Peter's anamoly as well as corneal transplants in children. I received articles from medical journals providing more info. Sorry, but I don't have those articles here. Good luck. SUBJECT: Re:hyperlexia Date: 96-12-27 15:40:38 EST From: KevisB There is a hyperlexia web page. I don't have the address offhand, but you can find it with a web search. It is very informative. SUBJECT: Re:Agenesis of Corpus Callos Date: 96-12-29 16:45:00 EST From: Test957 Do you have any information on language development in Aicardi syndrome children. I am a speech pathologist and I am working with and have worked with 2 girls that have been diagnosed with Aicardi's. Most of what I have learned has been provided through the parents, through info form the Aicardi Foundation Newsletter, and national parent conferences. Thanks! Jacqui SUBJECT: APERT's Syndrome Date: 96-12-30 17:45:31 EST From: SAHockey12 I am a special education teacher in San Antonio Texas and need information on APERTS Syndrome for a student entering my class in February. Thank You. SUBJECT: Peter's Anomaly Date: 97-01-05 01:45:36 EST From: AMccall104 Peter's Anomaly is a rare and widely varied disorder involving malformations in the anterior segment of the eye and primarily affecting the cornea. I am looking for other people with any of the above listed conditions. I am over thirty and have never met another adult with Peter's. My daughter inherited it from me, and while I have found several other families with children with various levels of Peter's, none of them show a clear genetic link. It is also likely that my father's corneal atrophy is somehow related and that I inherited from him. If you have or know someone with Peter's, please get in touch. I am trying to learn as much as possible both for myself and so I can share with others. I have dubbed this informal group Peter's Partners. It's a small and special club, and the rest of us would like to hear from you. K McCall SUBJECT: Re:Angelman Syndrome Date: 97-01-06 14:20:27 EST From: HOUSECATSS RRUTS- I am a Speech Pathologist working at a state mental retardation facility. A have a young lady on my caseload with a diagnosis of Angelman Syndrome. She is 16 years old and extremely active. She attends public school and I collaborate with her teacher to ensure carryover acvtivites are reinforced at her residential setting. Any suggestions or know of any resources which we can turn to? Thanks for your help! SUBJECT: Re:Mitochondrial Disease Date: 97-01-08 17:28:58 EST From: SLPWendy Would you please email me privately re:mitochrondial disease? Not sure the discussion is appropriate for this message board - could be too specific, etc. I am a speech path who worked with a child with this disorder and would like to discuss. SLPWendy@aol.com SUBJECT: hyperlexia Date: 97-01-08 23:06:25 EST From: BMOM619 Starbase4: Am new on-liner. Interested in information you may have regarding Hyperlexia. Am Resource Room teacher k-6. May be seeing some children who fall into this category. SUBJECT: Marfan's Syndrome Date: 97-01-09 02:03:47 EST From: TJ6416 I have a son who was diagnosed with Marfan's Syndrome. All these doctors that diagnosed him can't tell me what it is, they just give me the "characteristics"(symptoms). Although my son only has 3 of the characteristics (dislocated eye lens, enlarging aorta & a high pallete) they still want to label him with this syndrome. I do know that Abe Lincoln had this. It's rarely a serious problem, however, with the one symptom my son has (enlarging aorta), I'm told he could pass away suddenly if the aorta enlarges too much. Right now they have him on medication to help slow down the enlarging of the aorta. (They say it's no guarantee). Does anyone have this syndrome, know anymore about it, or can tell me where I can get any info? SUBJECT: Orofacialdigital synd type 1 Date: 97-01-10 02:33:50 EST From: AkRhodey Mother of a cute little three year old with this would like to hear from other parents of a child with this. Caitlyn is three and in preschool. Thank you! e-mail at AKRhodey@aol.com KP SUBJECT: Re:Agenesis of Corpus Callosum Date: 97-01-10 20:09:17 EST From: Strick114 I have had some experience with agenesis of Corpus Callosum SUBJECT: 22 chromosome? Date: 97-01-11 20:25:30 EST From: ShelleyHL Has anyone ever heard of anything called Georges Syndrome, or something like that. It might be with a "J". I'm sorry to be so vague but that's all the info I have. ShelleyHL SUBJECT: Re:APROXIA Date: 97-01-11 20:45:41 EST From: Sped2dmax Are you sure it is not Apraxia? I teach students with Aphasia, Apraxia, and Dyslexia. I never heard of Aproxia. SUBJECT: Cornelia de Lange Syndrome Date: 97-01-12 08:49:09 EST From: BoomMcM Anyone out there working with any CdLS students this year? I have several questions for anyone who has a child 5 years of older. My student has been with 1 1/2 years and we are still looking for techniques to deal with perseverative and behavoiral issues. Please respond here or e-mail at BoomMcM. Thanks! SUBJECT: Re:Angelman Syndrome Date: 97-01-16 00:56:01 EST From: ChmpgnLove In Am A Special Education Teacher, Who Has Had 2 Students With Angelman's. I Would Be Interested In Exchanging Information. E-mail Me @ChmpgnLove @aol.com SUBJECT: Re:William's Syndrome Date: 97-01-16 01:02:26 EST From: ChmpgnLove My Roommate Is A Speech Therapist Who Has Experience With Williams's Syndrome. E-mail us @ ChmpgnLove @aol.com. SUBJECT: Re:CHARGE Association/Syndro Date: 97-01-16 01:06:27 EST From: ChmpgnLove I Had A Student In My Class With CHARGE..I Had To Do Intense Feeding Therapy With Her. She Was Very Involved. She Only Lived To Be 6 Years Old. E-Mail Me @ ChmpgnLove@aol.com. Would Love To Share Ideas/Stories. SUBJECT: Battens Disease Date: 97-01-16 01:13:29 EST From: ChmpgnLove I Am A Early Childhood Special Education Teacher Who Currently Has 2 Sisters In My Room, Who Are Diagnosed With Battens. It Is A Terminal Illness, That Starts With Seizure Activity & Is Terminal. If Anyone Has Any Info On How To Deal With This, Please E-mail Me @ ChmpgnLove @aol.com. SUBJECT: Re:Battens Disease Date: 97-01-16 20:54:57 EST From: RonnieBeh I am a special educator who has been working very closely with a boy with Batten's for three years. It is one of the most DEVASTATING disorders I have ever encountered. It usually begins with visual impairment, goes into total blindness, cognitive involvement, speech (expressive) deterioration, seizures, loss of fine and gross motor function, and emotional and behavioral disability. Impulse control becomes compromised. The one area, according to research, that remains fairly intact is receptive language. These children are VERY aware of what is happenning to them, although they may present as retarded. Parents and children both need help and support; there are several groups in existence. There are some educational strategies that we have obtained from informed sourcesthat are effective. Although Batten's is ultimately fatal, many children live into their twenties. One young man I was following just died 3 weeks ago; he was thirty four. It would be helpful if we got in touch to exchange information since there is so little out there. Please E-mail me @RonnieBeh. SUBJECT: Coffin Lowry& Rhett Date: 97-01-16 22:18:40 EST From: WWhitefam I would love to hear from Mhoonshot- they left a message on this board sometime ago. I have a student in my class with this syndrome. He is also deaf. I would love to compare notes and share information that might be interesting to the both of us. I also have a student with rhett syndrome. If anyone is interested in sharing notes on that. Please e-mail me-WWhitefam@aol.com. SUBJECT: Re:Battens Disease Date: 97-01-17 22:05:29 EST From: NTBRITTAIN I am a special educator who just read your message. It may help you and the other gentleman to get in touch with the National Organization for Rare Disorders. They have info. on Batten Disease and possible support groups. Their web site is www.NORD-RDB.com/~orphan and their e-mail address is orphan@NORD-RDB.com. Good luck and hang in there. Sincerely, Teresa L. Brittain SUBJECT: Re:General Information Date: 97-01-17 22:11:34 EST From: NTBRITTAIN If you need more information on a rare disorder, the National Organization for Rare Disorders (NORD) may be able to help. NORD provides information and has support groups. Several of my students have rare disorders and NORD has helped both me and my kids' parents out tremendously. NORD has a web site at www.NORD-RDB.com/~orphan and an e-mail address at orphan@NORD-RDB.com. Good luck !!! Teresa Brittain SUBJECT: Asperger's Date: 97-01-20 12:42:17 EST From: JABCDE I attended the national CHADD conference in Chicago last November. I thought it was fantastic. One of the presenters was Dr. Ami Klin, who appears to be one of the leading experts and researchers for Aspergers. In speaking with him after one of his talks, he informed us that he, in conjunction with the rest of the Yale group, is putting out a book within the next few months detailing the latest research and developments they have come up with. If this is an area of interest to you, watch for it! SUBJECT: parent of Williams syndrome Date: 97-01-22 01:21:31 EST From: Bmicheli I'm the mom of a 7 yr old girl that probably has Williams. I am interested in emailing with others. My daughter has communication difficulties; she uses some sign, has a communication device (a macaw), uses pictures, and vocalizes a lot (not words). Her communication difficulties are her main problem. Her ability to understand is higher than her level of expression; however, she still is mentally impaired (approx. 3-4 yr. delayed). If anyone is interested in talking; email me. SUBJECT: Cri-du-chat Syndrome Date: 97-01-22 19:16:52 EST From: KECO I am a teacher of special needs children. Any information you can give me would be a great help, SUBJECT: Rare disorder Date: 97-01-27 18:39:54 EST From: JeffrsonU I have a student that I teach who has a chromosomal disorder that doesn't appear to have a name? Some characteristics: Non-verbal, mutation on the 6th pr of chromosomes, aggressive, ambulatory,I.Q. in the MR range. Any ideas? SUBJECT: Prader Willi Like Date: 97-01-28 09:32:08 EST From: Poohmug Hello, I have a 3 year old son. He has an undiagnosed overgrowth syndrome. It is very much like Prader Willi. I would love to hear from someone who is dealing with Prader Willi to compare and just talk to for support. He is very large and cant walk or talk. He loves to eat. And just has recently started having a temper. He also has started eating paper and toys, things he don't usally do. Has anyone else had this experience?? Please e-mail me at Poohmug@aol.com Thanks, Lila SUBJECT: Re: Angelman Date: 97-01-28 21:11:17 EST From: Jwjen I just began working with a 9 year old with Angelman Syndrome- our structure is very informal, usually at my appartment or out in the community. Any suggestions on techniques that could be worked in without being obvious would be appreciated-- i.e. not school- structured-- Thanks- SUBJECT: Re:RETT Syndrome Date: 97-01-29 14:23:28 EST From: Orwellalso I have a friend whose daughter has RETT syndrome. I'm not sure if she is online, but if you are interested in contacting her, email me and I'll give you her address. She is very active in the Rett community and knows alot. Megan is now 13 and doing well in school. Laura Orwellalso SUBJECT: Sydenhams Chorea Syndrome Date: 97-01-31 07:11:46 EST From: MEJ 12859 Please Help! I am in need of information on Sydenhams Chorea Syndrome. I've heard it is very rare. SUBJECT: Re: JOUBERT SYNDROME Date: 97-01-31 23:49:43 EST From: UCABlade I have a 4yr daughter who is missing most of her vermis and a small portion of the left, and a little of the right of her cerebellum. She has had surgery on one eye and wears glasses for binocular vision. She also has verbal apraxia, and has some trouble with her balance when running or trying to move very quickly. We just came back from Boston seeing a specialist who researches the cerebellum. It was a good meeting, they mentioned Joubert Syndrome in their notes but said she was not showing other signs that they normally would see with it. Do you know what other signs? Our daughter at birth had no head or neck control. Low muscle tone in her shoulder girdle area. She suffered from seizures at 2wks of age but has outgrown them since l8months. Her gross and fine motor was monitored closely by a therapist from birth. She is close to her peers in this area now at 4, but in the beginning it was rough. We weren't sure if she would ever take steps. Her speech seems to be the hardest hit. Her spontaneous expressive side mostly. Her receptive side is supposedly age appropriate. She has a great disposition, and personality. She is a very determined child, and practices her speech or motor skills on her own while playing. If you have any more info. on Joubert syn. please let me know I would really appreciate it. SUBJECT: Elective Mutism Date: 97-02-01 07:23:58 EST From: Randrjayne I have a new student with this disorder and don't seem to be making much progress. I need information about elective mutism and how to work with students who exhibit this behavior. Thanks. SUBJECT: Mosaic Trisomy 13 Date: 97-02-02 11:03:21 EST From: McBabe 8 We have an adopted 10 year old son that was at first diagnosed as Beckwith-Weideman Syndrome but after genetic testing last year was re-diagnosed as Mosaic Trisomy 13. No one knows much about this and we would appreciate any info that anyone might have. He has some behavior problems, is severely retarded and has a polycystic right kidney. He is currently taking Lithium, Trazodone, and Retallin. He sees a psychiatrist once a month but he seems as baffled as we are about what is going on with our son. It doesn't help that he is largely non-verbal. He can make his immediate needs known but conversation with him is limited to what he wants at the moment. He is in a special ed class and is doing better but his long term prognosis is bleak. If anyone has a child like this and you have any ideas to help please let us know. He cannot be left unattended at all. He is very destructive to the things in his environment. He is especially hard on his clothes, particularlly pjs. Any help or advice would be appreciated. Thanks. Our email address is McBabe 8 @ AOL.com SUBJECT: Multiple handicaps Date: 97-02-03 23:18:11 EST From: FireBrook9 Seeking standards of behavioral modification techniques used during the years of 1987-1990 for severely handicapped pre-school and elementary students. Specific area of handicap would be multiple handicap, students that are blind, self-abusive, aggressive, and have autistic like tendencies. Please respond with listings of books, journals, and/or articles that address this area. SUBJECT: Re:Multiple handicaps Date: 97-02-04 20:42:18 EST From: RonnieBeh Our school serves that population (blind/MH). We have received enormous help from professionals at WIHD in Valhalla, Ny. E-mail me at RonnieBeh for more info and references. SUBJECT: Metabolic Disorder Date: 97-02-05 19:26:20 EST From: MamaSaun I wanted to inform others of a metabolic disorder recently discovered and currently being studied at UCSD (San Diego). There are four children in the study right now, my son being one of them, and they have the children on a new chemical being tried. The disorder affects the 5' (prime) nucleotidase enzymes. Of all the metabolic disorders with decreased enzymes, there are only 2 disorders with increased enzymes. These four children have one of those two disorders. Their symtpoms are: Seizures, Ataxia, Developmental and Speech Delay, Chronic Infections (my son's had numerous ear tubes and sinus procedures). The parents have also noticed strange eating habits. They seem to crave carbohydrates. The university is currently looking for 15 more children at the time of this writing to start in a new study, using the same chemical. Please feel free to email me at MamaSaun@aol.com for more info. SUBJECT: Re:Multiple handicaps Date: 97-02-07 14:43:30 EST From: ADuris1608 Reach out and Teach by Kay Alicyn Ferrell Ph.D is good for early childhood. SUBJECT: Re:Stickler's Syndrome Date: 97-02-08 13:04:21 EST From: FTBICE What do you mean by DH and ER. we have a student in our distrcit with this diagnosis and she attends a regular kinder class with support from VI and content mastery in an inclusion setting. I guess it depens on the specific abilities and disabilities of your student as to where he should be placed not necessarily on his diagnosis. The literature says that individuals with Stckler's syndrome will have severe visual problems on their second decade and also show orthopedic problems around that time too. I hope this information can be of help. SUBJECT: Re:Elective Mutism Date: 97-02-08 19:40:33 EST From: JKaplan29 I taped a Donahue program on Selective Mutism. It is a really good show. I will send yo a copy if you Email me your address. janette SUBJECT: Re:Joubert Syndrome Date: 97-02-10 00:04:02 EST From: Jennx i currently have one student on my caseload with this disorder... Age 1.5 please forward any clinical info re: longevity ... Mom has 2 children with disorder both blind SUBJECT: Sensory Intregation/Vater Sy Date: 97-02-12 11:57:59 EST From: SBWAV I am looking for information on homeschooling a young child (age 5) that has Vater Syndrome, cannot speak and has sensory problems. She does use some sign language. SUBJECT: Gullian Baire Syndrome Date: 97-02-13 22:59:40 EST From: WillisFrog I am in need of any information of Gullian Baire Syndrome(spelling?) My friend was originally diagnosed with cancer of the spine. Has become debilitated in only one month. Please E mail me with any information. Thank you. WillisFrog SUBJECT: Crouzan Syn. Date: 97-02-15 08:08:40 EST From: RAILEGH Help! I am an early intervention teacher with a three year old boy who has Crouzan-fieffer syndrome in my class. He displays autistic like behavior and is very aggressive. Can anyone tell me more about this fro a behavioral standpoint? Thanks. Railegh - please E-mail as I don't come here often! SUBJECT: Re:Smith-Magenis Date: 97-02-15 12:49:52 EST From: Nantz Alot I am the mother of a child with Smith-Meganis Syndrome. If I might be of any assistance, be sure to e-mail me. SUBJECT: Re:Elective Mutism Date: 97-02-16 00:28:51 EST From: Pmp88 Can you please send me a copy, or let me know how I could get one. I will pay for the tape, but I have a 4th grader who is an elective mute and I would love to see it. Thank you Patti pmp88 SUBJECT: Williams Syndrome Date: 97-02-16 22:53:10 EST From: ALange6206 My 11 year old son has Williams Syndrome. He has had two open heart surgeries that they say are associated with this disease. After his first surgery he had very high blood pressure. He was on 2 different blood pressure medicines for over 1 year. After his 2nd surgery his high blood pressure went away. He also wears glasses and had surgery on a lazy eye whe he was 3. He is speach delayed and is just beginning to learn to read and write. If you have any more info on this disease you can e-mail me at ALange6206@aol.com. SUBJECT: Re:Landau - Klefner Date: 97-02-17 14:23:44 EST From: PKDOLLAR I have a 5 year old son with Landau-Kleffener. I am also looking for information on educational programming if you hear of anything let me know. You can e-mail me at PKDOLLAR@aol.com SUBJECT: OBSESSIVE-COMPULSIVE DISORDE Date: 97-02-18 08:44:31 EST From: BEDITZZY I am new to aol and finding my way around. Have a 10th grader w/OCD. Surprized there is not more info. or conversation here. email BEDITZZY SUBJECT: Re:OBSESSIVE-COMPULSIVE DISO Date: 97-02-18 20:28:30 EST From: Ratatat <> If you use keyword PEN you will find message folders there that are quite specific about OCD. SUBJECT: Re:Sydenhams Chorea Syndrome Date: 97-03-02 01:22:03 EST From: Upsidjsign Try contacating NICHY. Their # is: 1-800-695-0285. I am a Sp. Ed. teacher & I've found their resources to be extremely helpful. Lots of up to date info. and....it's FREE! Hope it helps! SUBJECT: Re:Elective Mutism Date: 97-03-02 01:31:48 EST From: Upsidjsign I have been working with a student with EM for 2 1/2 years. She just began speaking to me this past month. I think the most important factort was that I allowed her to use other avenues of communication to express herself: gestures (replaced with formal signs as the need evolved, writing/ drawing pictures). Later (the 2nd yr.) we moved on to whispered communication--which was a bit funny since I am hard of hearing and use HA's. She began voicing softly to me so I could hear, as obviously I wasn't getting it after 3-4 attempts on her part. (by the way, she is a HA user, too, so she knows I wasn't faking it!) Eventually her classroom teacher & I dev. a system where the whole class would have a party when she talked audibly in school. She carried around a "Rap Sheet" & each of her teachers and other adults who interact with her had to do a smile or frown for audible speech. With 20 kids cheering her on, the system eventually did work. But............please note the time frame! PS. I've been teaching 25 years, have had other EM students, and according to my experience, this time frame is NOT at all unusual. Good luck! SUBJECT: Re:Sydenhams Chorea Syndrome Date: 97-03-02 10:54:08 EST From: Wheels2082 Upsidjsign, They're great for referals too. Found another place for testing that was familar with my disability. Dawn Saur (Wheels2082) Online teacher Special Education ADVOCATE SUBJECT: PICA Date: 97-03-05 19:33:46 EST From: PAC74 We desparately are in need of information on the eating disorder PICA. If you have resources or information please E-MAIL me at the folowing address: PAC74@aol.com SUBJECT: Re:PRADER WILLI Syndrome Date: 97-03-07 22:35:32 EST From: Victornov Please tell me how to obtain some of that information. My 6 year old son is in first grade but needs to improve concentration and behavior. My E-mail is Victornov@AOL.COM. Thanks Victor Novoa SUBJECT: Prader-Willi Date: 97-03-07 22:50:28 EST From: Victornov I am the father of a 6-year old with PW. If you would like to share some experiences or sources of additional information, my E-Mail address is VICTORNOV@aol.com Victor Novoa SUBJECT: Re:Tourettes Date: 97-03-10 17:38:26 EST From: PETENHLFPT I have a student with Strep Induced Tourettes, OCD, and Autism. He has some behavior difficulties but it is must frustrating seeing him trying to control his outbursts. It seems so apparent that he is aware of what is happening to his little body and it scares him. Any advice or tips are welcome. SUBJECT: Re:Landau - Klefner Date: 97-03-13 13:24:24 EST From: HOUSECATSS I have been asked to evaluate a 6 year old boy with possible Landau-Klefner syndrome. Parents are looking for an augmentative communication device. Any comments, or success stories???? SUBJECT: RARE DISORDER Date: 97-03-15 10:06:20 EST From: MA KOBY I Have a son that is 9 years old. He has a chromosome abnormality....He has a partial 7q trisomy mosic, Has extra #7 up to the #1. As far as we know no one else has been documented for this...He is mentally and physically handicapped. Would love to hear from anyone who might know something about this disorder....E-mail me at MaKoby@aol.com SUBJECT: RE: Landau Klefner Date: 97-03-16 00:39:28 EST From: Mel0dy Know a family of a student who are exploring a "steroid" treatment - Supposedly, the hospital has had some successes with it. They had to complete an in-depth application and he underwent tests/observations for a week. From there they recommended auditory training before treating him. Anyone else know of anyone who has gone through this???? SUBJECT: FRAGILE X/RETTS Date: 97-03-17 01:56:31 EST From: Birdprch I would appreciate any info on Fragile X syndrome and Rett's syndrome, or where to locate info on the Internet. I am an ASU SPED student taking an MR class and have research papers due on both topics the second week of May. For Fragile X I am trying NICHY and for Rett, I am contacting NORD and the International Rett Syndrome Association. Any other sites online would be of great help. Please E-Mail me if it's possible, as I don't get to browse the sites much. (I will try to check this board though) THANKS!!!! SUBJECT: Pierre Robin Date: 97-03-17 20:05:32 EST From: Dolores675 I am searching for information on this syndrome. Are there any web sites or information that anyone can make available to me? SUBJECT: Williams Syndrome Date: 97-03-18 01:50:45 EST From: Adsor I am interested in getting information on Williams Syndrome from parents, teachers, and other professionals who have dealt with individuals with this condition. I am particularly interested in the types of school interventions that have been successful. SUBJECT: Hypomelanosis of Ito Date: 97-03-18 14:14:33 EST From: TinCord I have a 2 1/2 year old daughter with this disorder, would be interested in talking to other parents. TinCord @ aol.com SUBJECT: Re:Cri-du-chat Syndrome Date: 97-03-18 16:30:42 EST From: Graytank KECO, there are so many levels of Cri-du-chat (pronounced cray do shaw, means cry of the cat). The 2 I've dealt with were sweet girls. One verbal, the other non. One could write letters, the other, no. Try the National Organization for Rare Disorders at www.NORD-RDB.com/-orphan or e-mail to orphan@NORD-RDB.com Hope they can give you insights. I just felt my way through! SUBJECT: Autism/Apraxia Date: 97-03-19 19:08:02 EST From: AMA597 I am looking for information on both subject matters and how they are linked together. Thank you SUBJECT: Re:RE: Landau Klefner Date: 97-03-22 00:50:25 EST From: PKDOLLAR Hi, my name is Pam Dollar and I have a 5 year old son who sees Dr. Michael Chez in Chicago. He has LKS and has been on the steroid therapy for almost 3 months now. He is doing good and so far no side effects. We have seen a slow steady progress. Much more eye-contact, interaction, he responds to commands better and words that were always prompted before are becoming spontaneous. I would be happy to compare notes via e-mail with you or the child's parents. I just found out about a round robin of about 50 LKS parents who e-mail each other back and forth. I understand they are trying to get a listserve going. I am not on the round robin yet but the leader is supposed to be contacting me soon. Feel free to e-mail me at pkdollar@aol SUBJECT: Lesch-Nyhan Syndrome Date: 97-03-22 16:43:52 EST From: Sockies1 If anyone has any knowledge about this rare disorder please e-mail me!!! Thanks.. SUBJECT: Re:Lesch-Nyhan Syndrome Date: 97-03-22 18:55:01 EST From: JFVH Contact NORD. National Organization of Rare disoders. They can give you a list of support groupss, medical and educational information. I've worked with 2 little boys that had this disorder. If I can find the Lesch-Nyhan foundation address I'll write it in the BB. SUBJECT: Precious baby undiagnosed! Date: 97-03-23 17:04:22 EST From: TnJAdams We have a precious 2 year old daughter who is developementally delayed, has a seizure disorder, microcephaly (small head), advanced bone age and is the sweetest little girl. The doctors can't find a syndrome and don't know the cause or have a diagnosis. We've run several tests. Can anyone help us? From a frustrated mom in Texas. SUBJECT: Re:Precious baby undiagnosed Date: 97-03-25 17:02:27 EST From: Test957 While lots of syndrome's have seizures involved, I was wondering if the doctors had investigated Aicardi Syndrome? It involves only girls, seizures, agenesis of the corpus collosum (Spelling is off, I'm sure), and possibly a few other indicators. SUBJECT: Re:Pierre Robin Date: 97-03-26 21:49:05 EST From: BoomMcM I worked with a boy with this syndrome a few years ago. If you have specific questions, please e-mail me. I hope I can help you. SUBJECT: Re:Joubert Syndrome Date: 97-03-27 00:26:57 EST From: GLynn65634 Iam LSP in classroom with 10yr. old girl diagnosed 2yrs. ago with Joubert Syndrome. We have been looking for more info. I recently have come on-line so thrilled to see your note. Would love to discuss further. SUBJECT: Re:Pierre Robin Date: 97-03-29 09:29:49 EST From: Skoscins I'm a sp. ed teacher. My 27 year old step-daughter was diagnosed with this. They also called it something else that won't come to me at the moment. E-mail me if you want to chat. Oh, maybe it was Treacher Collins or something to that effect. SUBJECT: BANNAYAN-RILEY-RUVALCABA SYN Date: 97-04-02 22:40:42 EST From: Double L 7 If anyone has any info on this rare disorder, please leave message. My daughter may have this and I'd like to know more about it. Thanks! SUBJECT: BANNAYAN-RILEY-RUVALCABA SYN Date: 97-04-02 22:40:42 EST From: Double L 7 If anyone has any info on this rare disorder, please leave message. My daughter may have this and I'd like to know more about it. Thanks! SUBJECT: Chromosome 10 deletions Date: 97-04-04 21:51:49 EST From: Double L 7 Would like to have information on deletions on chromosome 10. If anyone has any info to share it would be greatly appreciated. SUBJECT: Usher's Syndrome Date: 97-04-09 09:39:59 EST From: SoniaHart I was wondering if there anyone there who has a child (children) with Usher's Syndrome who happen to also have a cochlear implant. I would like to exchange ideas on accomodations and rate of progress in different areas. Sonia H. SUBJECT: Re:Joubert Syndrome Date: 97-04-13 00:03:04 EST From: GLynn65634 Would love to hear from anyone treating a student with this syndrome. We have some info but would like to share some too! SUBJECT: Re:Childhood Disintegrative Date: 97-04-16 16:24:28 EST From: JMLCMB Hi all. I read a post that asked for info about Childhood Disintegrative Disorder. I am a Speech Therapist and I currently have a student that is thought to have this disorder. I have very little formal info of this disorder, as there seems to be very little out there, but I can tell you what I see first hand. If any one has more concrete info. on this disorder I would appreciate it too. Thanks. Chris SUBJECT: Re Laudau - Klefnerr Date: 97-04-22 06:18:47 EST From: JMLCMB Hi everyone, ignore my previous post. My students diagnosis just change from Childhood Disintegrative Disorder to Laudau - Klefner. If anyone has suggestions - please e-mail them to me. I am his speech therapist! Thanks in advance!! SUBJECT: congenital hypotonia Date: 97-04-26 19:57:07 EST From: Skelly p does anyone know of resources/info for a family of a child recently diagnosed with this syndrome? SUBJECT: Inv Dup 15 Date: 97-04-28 01:42:14 EST From: Kitzm5 My son who is 7 years old has been diagnosed with a chromosome disorder identified as Inv Dup 15. There isn't alot of information regarding this disorder so would love to have contact with other families dealing with this. SUBJECT: Fragile X Syndrome Date: 97-04-29 22:27:47 EST From: SSKM If you are interested in information on FXS--e-mail me at SSKM@aol.com SUBJECT: Re:Pierre Rob./Treacher Coll Date: 97-05-04 17:37:08 EST From: KTteech I had a nephew who had Treacher Collins syndrome. He died unexpectedly following surgery to repair his palate. My sister-in-law is now pregnant again so I have done extensive research into this topic. I also had a girl in my class with this syndrome from Sept. to Feb. when she moved out of state. If you would like to talk, e-mail me at:KTteech@AOL.Com SUBJECT: Re:Pierre Rob./Treacher Coll Date: 97-05-04 17:59:00 EST From: KTteech After writing my last post, I looked into Pierre Robin syndrome. It is not the same as Treacher Collins, sorry, I guess I put the cart before the horse, I should have looked for info on P.R. first. SUBJECT: Endocrine Dysfunction/Brain Date: 97-05-07 00:49:17 EST From: Lldluv2sew I have a student diagnosed with this condition. I'm not sure if it has another name. Can anyone give me information about it, please? Send e-mail to lldluv2sew@aol.com. Thanks SUBJECT: Starbase4 Hyperplex Symptoms Date: 97-05-10 16:30:45 EST From: Sushikoy Starbase, have been unable to locate signs and symptoms of Hyperplexia that you have posted earlier under Autism/PDD. Can you re-post, or E-mail direct to Sushikoy@aol.com.? This would be greatly appreciated. SUBJECT: Lorenzo's oil Date: 97-05-30 23:59:54 EST From: Janetberg Does anyone have any information on this progressive disorder? I have recently met a family with two boys, 11 and 6 both of which have it. The 6 year old is losing skills quickly. I do not even know the name of the disease. SUBJECT: Re:Lorenzo's oil Date: 97-05-31 00:16:13 EST From: JKaplan29 Rent the movie by the same name but WARNING-Major kleenix is needed! One of the best movies I have ever seen! Janette SUBJECT: Lennox Gesteault Date: 97-05-31 11:43:21 EST From: WALSHSAUND Does anyone have any info on Lennox Gesteault (I'm not sure if the spelling is correct!). I would greatly appreciate it. Thanks!! SUBJECT: post traumatic stress disorder Date: 97-05-31 11:43:58 EST From: WALSHSAUND Any info out there on PTSD? SUBJECT: Lorenzo's oil Date: 97-06-04 10:04:22 EST From: Janetberg Does anyone know if the medical name of the disorder from the movie is adrenoleukodystrophy or ALD? Please e-mail me, I am having trouble figuring this out. SUBJECT: Re:fragile x Date: 97-06-04 17:53:13 EST From: Diffchin students are excellent in vocabulary, benfit from visuals, memory excellent, many same strategies as LD kids - depending on range Don't look at total IQ score look at sub-scores SUBJECT: Need Urgent Help Date: 97-06-05 14:14:23 EST From: FECrawf I have an 8yo. son with Aarskog Syndrome, ADHD, and other undiagnosed problems. Most of his doctors have said that if he wasn't so sociable, they'd say he is autistic. I am having 2 major problems. First of all, he is not toilet trained despite all my efforts. He doesn't even seem to realize either that he needs to use the bathroom, or that he has gone in his pants. It just doesn't seem to phase him. Also, if he is left alone for any length of time, he will find things that don't belong to him, and destroys them, whether with scissors, water, pens, whatever. It would be impossible to be with him 24 hrs. a day, but I don't know what else to do. If anyone has any suggestions, please e-mail me at Coriand3@aol.com. I am using my parents' computer right now, and can't get online on my computer, except for a flash session to pick-up my e-mail. Thank you for your help. Cori SUBJECT: Re:APERT's Syndrome Date: 97-06-06 20:38:29 EST From: ETolson643 My son, who is 15, has Apert's Syndrome. The general characteristics include fused facial bones, fused fingers and fused toes. He also had a cleft palate, not always present in all cases. He just recently had his 15th surgery at Boston Children's Hospital. He is doing well and looks great. He has normal intelligence with some social delays. SUBJECT: FAS/FAE website Date: 97-06-10 01:06:19 EST From: Momthebest www.NOFAS.org National Organization Fetal Alcohol Syndrome - info for parents, physicians and teachers SUBJECT: Tourettes Date: 97-06-11 21:00:14 EST From: KLJWhite I am working in an afterschool program and have a 17 year old male participant who suffers from this disorder and I do not have all the information concerning this syndrome. He is quite the violent type at times and other times he can be just a big baby. Please help with strategies????!!! E-mail to KLJWhite@AOL.com Thanking you in advance...... SUBJECT: nonparallel vision Date: 97-06-12 18:48:22 EST From: FOURCBOYS I have been told by my 8 yr. old son's LD teacher that he may have nonparallel vision. Opthamalogist checked his vision earlier this year but said nothing. Would he find something like this without us telling him the symptoms?(angling head, body, papers...when trying to read) My son has epilepsy and some learning disabilities. Still not reading more than basic sight words and we can't figure out why. I have never heard of nonparallel vision and I am desperately seeking info. Please respond here or to fourcboys@aol.com. Thanks SUBJECT: Re:nonparallel vision Date: 97-06-13 20:17:04 EST From: Janetberg Make sure that if you get your son retested have it done by an OPTHOMOLOGIST, not an optomotrist specializing in vision therapy. Opthomologists are MDs, the other is on line with chiropractors and others working way out of their league. SUBJECT: Re:Tourettes Date: 97-06-13 22:04:47 EST From: Ratatat < I am working in an afterschool program and have a 17 year old male participant who suffers from this disorder and I do not have all the information concerning this syndrome.> Have you or the parents been in touch with the National Tourette Syndrome Association? SUBJECT: Rasmussen's Encephalitis Date: 97-06-14 10:08:38 EST From: JLASRMM I have a 16 year old daughter with Rassmussens's. Brain Surgery 6 years ago now helped with seizures greatly (still having a few small ones). School continues to be tough but she makes progress. Our school district allows us to push the max on the amount of LD Resource time she gets. Any ideas, suggestions, or helpful hints on any areas would be great. SUBJECT: Re:nonparallel vision Date: 97-06-14 18:18:16 EST From: FOURCBOYS We did have our son tested by an MD. Sorry, I just misspelled Optha...whatever. This MD supposedly specializes in kids with handicaps. Would nonparallel vision be reoutinely screened? SUBJECT: XXX SYNDROME OR TRIPLE X Date: 97-06-18 14:31:34 EST From: Ptotwo I HAVE AN ELEVEN YEAR OLD DAUGHTER THAT WAS DIAGNOSED AT AGE 5 WITH HAVING AN EXTRA CHROMOSOME. I AM LOOKING FOR RECENT INFO. ON THIS DISORDER. SUBJECT: Re:nonparallel vision Date: 97-06-19 08:02:24 EST From: Ratatat I would ask the ophthalmologist directly about nonparallel vision. If he discounts its existance ask for his reasons. Once, after the suggestion of a teacher who'd heard about an optical problem that could effect reading, I took my daughter to the ophthalmologist for testing. He told me that the "condition" the teacher mentioned doesn't exist and was "invented" by individuals who did not have medical training in the workings of the ocular system nor understood how the ocular nerves function. Bascially, he told me that what they were saying was happening *could not* physically occur. This could be the case with this nonparallel vision-thing. It could just be someone's idea. There are lots of fads out there, and ideas about what's causing a child problems, etc. that have no grounding in medical or scientific fact. This could well be one of them. Tread cautiously. SUBJECT: Re:XXX SYNDROME OR TRIPLE X Date: 97-06-19 08:03:42 EST From: Ratatat Contact NICHCY 1-800-695-0285. This is the National Information Center for Children and Youth with Disabilities. They have all sorts of information about disorders including national and regional support/advocacy groups dealing with rare disorders. Their information is free. SUBJECT: I cell syndrome Date: 97-06-19 21:49:30 EST From: PMJ 48 Does anyone know a child with I cell syndrome ? Do these children ever live beyond age 4 ? PMJ SUBJECT: Re:Kawasaki Disease Date: 97-06-29 19:36:17 EST From: Redstrabre This is the first time I have heard of anyone asking about Kawasaki Disease in 18 years. I have a daughter who has Downs syndrome. When she was 3 weeks old, the doctors thought my 2 year old had Kawasaki Disease. She had a rash as well as the palms of her hands and the bottom of her feet started peeling. It was never confirmed whether it was measles or Kawasaki Disease. This occurred at Walter Reed Medical Center in D.C. She is just fine today. There doesn't seem to be any residual effects. SUBJECT: Re:Precious baby undiagnosed Date: 97-07-01 20:38:21 EST From: WWhitefam I am a Preschool teacher in Tex. Alot of my children are special kids. Please have your Dr. refer you to Scottish-Rite hospital in Dallas. All the parents that I work with take their children there. The staff are very willing to work with you. If you can't afford the cost- please find a Shriner- They will pick up all of the bills and help you to get the paper work all turned in. It is a wonderful place. The first place that they will send you to will probabllary be the "rainbow clinic". Good luck! SUBJECT: Re:XXX SYNDROME OR TRIPLE Xt Date: 97-07-01 21:32:39 EST From: Ptotwo To Ratatat: Thanks for phone number. I am presently awaiting info. SUBJECT: Saethre Chotzen Syndrome Date: 97-07-05 08:28:49 EST From: SCC3 1969 I am the mother of a 3 year old boy who Dr's say has Saethre Chotzen Synd. However, even they are not 100% sure. My son was born 4lbs at full term. He has fusion of all his cranial bones. His head was also deformed. He was born without an anus. The rest of his anomolies were: hypospadious, low set ears, his radial bones in his wrists were deformed, kidney reflux, and no bridge to his nose. I'm not so much upset that we don't know exactly if he has this syndrome or not, my main concern is that at 3 yrs. he is still only 20 lbs. He is so small! He has not grown an inch or gained a pound since August of 1996 despite supplemental G-tube feedings. Is there anyone else out there in a similiar situation? Or has a child with Saethre Chotzen Syndrome? I really could use a friend. Thank you. Carolyn Heffner e-mail SCC31969@aol.com SUBJECT: ataxia telangiectasia Date: 97-07-13 22:12:24 EST From: JZeM I am a school OT. I have two students (sibs) who have AT. Has anyone worked with kids with AT in the school setting? SUBJECT: Prader-Willi in Jr. High Date: 97-07-15 22:12:28 EST From: LiKal I teach a Special Education class with seventh and eighth graders. I had a student with PW last year (7th grader) and will have him in my class next year. I have a lot of information about PW but am looking for techniques/suggestions/ideas that can help develop appropriate social skills in the jr. high setting for students with this syndrome. Thanks. email to: LiKal@aol.com SUBJECT: Re:Cerabellar Ataxia/OMS Date: 97-07-20 19:14:39 EST From: Rabiitt I'm a special education teacher and I have the same trouble locating information and or resources to be of use. Word of advice, for free! Don't give up, keep pursuing your goal. If I find anything I'll get back to you. SUBJECT: Dandy Walker Date: 97-07-23 07:30:31 EST From: ShelleyHL I am looking for information re: Dandy Walker. Any information would be helpful. Child is preschool age. SUBJECT: dandy walker Date: 97-07-23 19:14:59 EST From: Mithue Try using the Nord Database (rare diseases) for info about Dandy Walker. http://wwwstepstn.com/nord/db/dbsearch/search.htm http://www.stepstn.com/nord/rdb_sum/275.htm Sue SUBJECT: Reyfsum or Refsum's Syndrome Date: 97-07-29 19:20:47 EST From: EZ4M I am looking for any info. or websites with info on Reyfsum's Syndrome. It has to do with the body's inability to process certain fatty acids resulting in demylinization. He is three years old and has a hearing and vision loss in addition to other cognitive and physical delays. Please let me know so I can share info with his family. Thanks, Anne EZ4M@aol.com SUBJECT: Re:Reyfsum or Refsum's Syndr Date: 97-07-30 08:13:09 EST From: Ratatat Your best bet is to call NICHCY 1-800-695-0285 and ask them too send you a list of referrals to national/state/local support and advocacy groups. If there isn't one specifically listed for Reyfsum's Syndrome, then make sure you ask for information on how to contact the organization for Rare Disorders. NICHCY is the National Information Center for Children and Youth with Disaibilities. Their information is excellent and free. SUBJECT: Re:Reyfsum or Refsum's Syndr Date: 97-07-30 16:11:55 EST From: ShelleyHL Try NORD (National Organization for Rare Disorders). They have a list of rare disorders and have information pertaining to those available. I'm sorry that I don't have their address here at home. Maybe someone else does and could post it here. SUBJECT: Re:Reyfsum or Refsum's Syndr Date: 97-08-01 07:38:45 EST From: Ratatat or for much more indepth info try... AOL NetFind: fragile x syndrome Hope this get you started...=~) Suzzane SUBJECT: hydrocephialus/hydrocephaly Date: 97-09-26 16:31:06 EST From: Sdacea I am looking for information about hydrocephialus, friends have just been told that their unborn baby has this condition. They are in a panic and shock. Although I have worked, as a teacher, with children with this condition, my info is mostlikely out of date. Can someone please E-mail me with resourses, basic infor, support groups ect. Anything positive and realistic would be great. The medical staff were not very positive, as is frequently the norm. I will forward all info to my friends. They live in CT. Many thanks for the help. E-mail to SDACEA@AOL.com SUBJECT: Re:hydrocephialus/hydrocepha Date: 97-09-27 07:36:25 EST From: Ratatat Contact NICHCY for excellent information about support, information and resources for almost any childhood disorder/disease. This is a clearinghouse for information, and it's truely excellent. 1-800-695-0285 SUBJECT: Re:Cornelia de Lange Syndrom Date: 97-09-29 21:59:27 EST From: ParTee929 I work with a 3 year old boy with Cornelia de Lange Syndrome. I would be interested in comparing charastereistics and ideas about working with these children. ParTee929 SUBJECT: Soto Syndrome Date: 97-10-01 04:24:58 EST From: DRRYDER I am working with a 7 year old boy with Soto Syndrome. He is making great progress but does not speak. He is learning sign using the Edmark reading program which seems to work well. Has anyone out there had experience with this and especially with a child learning to talk? The research seems to indicate that he will develop expressive language and we could use guidance as to at what age and how we can help. thanks SUBJECT: Re:Soto Syndrome Date: 97-10-01 15:40:37 EST From: ShelleyHL We had a student at our school last year with Sotos Syndrome. We have a whole notebook of information. Some information came from the National Organization for Rare Disorders (NORD). The parents also gave us a booklet which was very informative. I will have to look that up at school. There is a national organization and national support association, all of which I have addresses to ...at school. Give me a day or two... SUBJECT: Freidriech's Ataxia Date: 97-10-01 17:54:47 EST From: Agullette I am a teacher of the visually impaired and have a student with Freidriech's Ataxia-a from of muscular dystrophy where vision can be effected. My student is having problems with nystagmus which causes him to become nauseous at times. The nystagmus appears to fluctuate at this time. The classroom teacher is concerned about how this is interferring with reading. Has anyone else had any experience with this and have any adaptations I could try? Thanks.--Alyson in MN SUBJECT: Re:Rubinstein-Taybi Syndrome Date: 97-10-05 15:06:12 EST From: PMJ 48 I have a student in my class this year with RBS. PMJ SUBJECT: Fragile X Date: 97-10-14 07:51:22 EST From: SOtoole938 I am a special ed teacher currently working with a young student who has been diagnosed with Fragile X - any info. would be greatly appreciated! Thanks Please post or e-mail me directly sotoole938@aol.com SUBJECT: Trisomy 8 Date: 97-10-14 17:43:03 EST From: SPED30 I am a special ed teacher and I believe I will be getting a student with the diagnosis of Trisomy 8. I've been reading other postings and am wondering if I am wrong, or the information I received was wrong and what my future student has is Trisomy 18. If anyone has any information on Trisomy 8 or 18 I would really appreciate hearing from you. SPED30@aol.com SUBJECT: RETTS+assistive technology Date: 97-10-24 14:24:20 EST From: BCohen3990 I work with a student who has retts syndrome. This child has almost no use of her hands and we are interested in assistive computer and comunication devices. Any help or information would be of help to her , but also the rest of this small MH class. Thanks! SUBJECT: Re:RETTS+assistive technolog Date: 97-10-24 21:50:59 EST From: Mars000210 Hello your wrote: < This child has almost no use of her hands and we are interested in assistive computer and comunication devices. > Have you tried contacting NICHY / National Information Center for Chidren and Youth with Handicaps/ P.O. Box 1492 Washington, D.C.20013 1-800-695-0285 They will have information and agencies that can help this child. Closing the Gap < this group deals totally with computer technology for disabilities P,O. Box 68 Henderson, MN 56044 1-612-248-3294 Take Care Barb SUBJECT: Retts and computers Date: 97-10-29 16:57:18 EST From: SPITEACHER I have 4 students in my class who have Rett syndrome. My school was lucky enough to receive new computers for each class. I have a number of catalogs with adapted devices and programs. I will get the names of companies for you. Do you already have a computer? We have switches connected to the computer to operate simple cause and effect programs. The class also has "Intellikeys" which acts as a power pad that the students only need to apply slight pressure or touch to activate the program. Have you tried any switches with your student? There are a variety of different ones including head tilt, pinch, shadow and basic touch switch. I am very excited that you are interested in adapting your computer for your student, she is very lucky. I will get back to you on addresses and phone numbers for the information. Please let me know if you need anything else. SUBJECT: corpus callosum agenesis Date: 97-10-29 20:25:55 EST From: Chawklit42 I am a speech pathologist who is presently working with a 2 year old child with this diagnosis. Any and all information and help would be greatly appreciated. She is non verbal, hypotonic, has seizures a visual impairment and eating difficulties. Help please. Chawklit SUBJECT: Sevant Syndrome Date: 97-11-01 12:28:00 EST From: JONLOR63 I am a graduate student looking for any and all information on sevant syndrome (once referred to as idiot sevants). Please e-mail me at JONLOR63@aol.com Thanx :-) SUBJECT: Tourette Syndrome Date: 97-11-01 12:30:01 EST From: JONLOR63 Grad student (special ed) is looking for info on tourette syndrome (medical, behavioral, social, psychological, experience with etc...). Any info is greatly appreciated. Please e-mail me at: JONLOR63@aol.com Thanx! SUBJECT: Kibuki Syndrome Date: 97-11-03 23:40:52 EST From: SLehman222 I am interested in information on Kibuki Syndrome. Please respond or E mail SL222@aol.com Thanks SUBJECT: Re:Riboflavin responsive glu Date: 97-11-06 21:08:11 EST From: GTolmasoff If you can't find this disorder under its full name try RRG or RGR syndrome... Have you tried looking in the Compons interactive encyclopedia on cd rom.? There is also an excellent medical library at Rancho Los Amigos in Downey,CA. You might also try to pick up a nutrition book such asNutrition by neiman/Buttersworth.. See also the headings of beriberi or rickets.....................*******************............................... Hope this was helpful*** God bless you***STORKIE*** SUBJECT: Re:Joubert Syndrome Date: 97-11-06 21:15:49 EST From: GTolmasoff I am interested in obtaining more information about Joubert Syndrome. Can you tell me if you have a mailing list or seminars in the Los Angeles area? GTolmasoff Isiah40:30 SUBJECT: Re:DiGeorge Sequence/Syndrom Date: 97-11-15 06:43:34 EST From: MLADJA Hello! Just tuned in and saw a post of a while back re: DiGeorge Sequence. I am the coordinator for the Northeast VCFS/DiGeorge Support Group and the current President of the VCFS (DiGeorge) Educational Foundation. If you are interested in info, I have a lot of resources. Maureen Anderson SUBJECT: "C" syndrome Date: 97-11-16 11:45:12 EST From: JMoleti384 I have a 3 year old student who has just been diagnosed as having "C" Syndrome. Does anyone have any info on this syndrome?