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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.

[e-mail]

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? [e-mail].
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
[e-mail]

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
[e-mail]

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 [e-mail]
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. [e-mail],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 [e-mail]

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
[e-mail]

-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
[e-mail]. 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 [e-mail].

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 : [e-mail]

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 [e-mail]

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

<<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.>>

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
[e-mail].

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
[e-mail]

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 [e-mail] 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
[e-mail]

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
[e-mail]

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

<<Looking for info - alternative therapies, diets, prognosis, etc.  Working
with an 18 yr. old recently diagnosed.  Mom and SLP looking for help!!!>>

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

[e-mail]

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 [e-mail]
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 [e-mail].  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 [e-mail], phone number [phone].
I would also be willing to talk to you to give you my experiences with this
disorder.  My Email address is [e-mail].  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 [e-mail]
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
[e-mail].
Thank You, Vicki Knopf

SUBJECT:  Re:Scotopic sensitivity synd  Date:  96-07-02 10:22:41 EST
From:  Ratatat

<<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.>>

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
[e-mail]

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 [e-mail]
                            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 [e-mail].


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.  [e-mail]

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.
[e-mail]

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 [e-mail]       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
@ [e-mail].
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
[e-mail].

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
[e-mail].  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 [e-mail].  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 [e-mail]

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 [e-mail] 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
[e-mail].

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 [e-mail]

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

<<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.>>

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:
[e-mail]

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
[e-mail].     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
[e-mail]             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 [e-mail]

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
[e-mail]
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 [e-mail]

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:[e-mail]

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 [e-mail].  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 [e-mail].?  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 [e-mail].  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 [e-mail]
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
[e-mail].  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

<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?>

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

<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.>

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   [e-mail]

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: [e-mail]

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
[e-mail]

SUBJECT:  Re:Reyfsum or Refsum's Syndr  Date:  97-07-30 08:13:09 EST
From:  Ratatat

<I am looking for any info. or websites with info on Reyfsum's Syndrome.>

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

<Try NORD (National Organization for Rare Disorders).  They have a list of
rare disorders and have information pertaining to those available. <

Thank you!  You can get the phone number of NORD from NICHCY!

SUBJECT:
undiagnosed baby  Date:  97-08-09 18:02:12 EST
From:  Chrismira

There are many times that it takes years to determine the causes of a child's
disorder.  Keep your  mind and eyes open to all clues.  Sometimes the
telltale signs of a certain disorder appear as the child gets older.   She
may be  a one- of a kind, and a treasure !  Good luck
               Nancy

SUBJECT:  Self-Injury  Date:  97-08-15 01:38:44 EST
From:  Mavisavis

Is anyone else dealing with severe self-injury?  I have an adult foster
client with this behavior.  He doesn't really have a diagnosis to fully
explain this issue.  He does have severe mental retardation and autistic
disorder.  He has a history of SIB from infancy, and is currently 28.  I
would like to share support, info., advice, etc.  Please E-Mail me at
[e-mail]

SUBJECT:  RETT Syndrome  Date:  97-08-15 13:21:22 EST
From:  SPITEACHER

I am a special education teacher and have 4 girls with Rett syndrome in my
class.  I would be interested in communicating with parents or teachers who
have a student or child with the syndrome.

SUBJECT:  DiGeorge Syndrome  Date:  97-08-17 13:12:56 EST
From:  JulHofer

I have a 4 year old son with partial DiGeorge Syndrome and am looking for any
other families with children who have the condition.  I am particularly
interested in the "long term" prognosis of these kids in terms of school,
etc.

Thanks,
[e-mail]

SUBJECT:  Re:DiGeorge Syndrome  Date:  97-08-17 14:08:53 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:  Re:Self-Injury  Date:  97-08-17 22:17:51 EST
From:  BETHCALI

As a teacher's Assistant several years ago, I worked with an Autistic/MR boy
who was severly SIB.  He bould hit his face and bite up his hands and arms as
well as head butting and chinning.  What we did was utilize a thick, soft
helmet and arm splints EVERY time he did the target behaviour.  It greatly
reduced the SIBs so we could assess the purpose and further decrease the
target behaviours.

SUBJECT:  Classical PKU  Date:  97-08-19 10:56:03 EST
From:  JGreene571

Can someone speak to the future dietary needs, limitations, social stigmas
etc.. that these children deal with as they age?  Working with a five year
old right now.

SUBJECT:  Re:response to self-injury  Date:  97-08-19 22:42:35 EST
From:  Mavisavis

Beth,
Thanks for taking the time to respond.  I haven't found too many people that
have heard of such behavior.  Unfortunately with Ken, pretty much any
treatment is a "been there, done that".  The behavioral clinic that has
treated him extensively maintains that he is one of the most difficult cases
in the nation.  But, he is a member of my family now, and we just plug on.
We are having a little success with a newly tried medication.  Any idea what
happened to the little guy you worked with?

Marty

SUBJECT:  Need Klinefelter's Info.  Date:  97-08-20 15:34:40 EST
From:  MandM879

My wife will be working with a seventh-grade boy who has Klinefelter's
Syndrome, which has been described to her as a hormonal disorder.  Would
anyone have information about the disease itself and/or its effects on
children in the classroom?  Please send me info. at :  [e-mail]

Thanks.

SUBJECT:  Vaeter's Syndrome  Date:  97-08-27 18:01:18 EST
From:  Esaug24

I am a 1-3 LH teacher and will be getting a student w/ Vaeter's syndrome.
Other than IEP info, I am unsure about the syndrome. If anyone has any info
to share w/ me, I'd appreciate it! Please e-mail me -   [e-mail]

SUBJECT:
Re:APROXIA  Date:  97-09-17 22:18:32 EST
From:  DMccoy1038

MY SON HAS VERBAL APRAXIA. HE IS 10. AT AGE 4 HE BEGAN PRESCHOOL.AND WAS ONLY
ABLE TO SPEAK 10 WORDS. HE HAS HAD YEARS OF EXTENSIVE SPEECH THERAPY AND NOW
CAN SPEAK IN SENTENCES.  I DID A LOT OF MY RESEARCH AT LIBRARIES. I ALSO
CALLED THE NATIONAL CENTER ON RARE DISEASES AND THEY SENT ME INFORMATION. AT
4 HIS THERAPY BEGAN WITH TOUCH/QUE METHOD, WHICH TEACHES WHERE AND HOW SOUNDS
ARE MADE. THERAPY ALSO INCLUDES MUCH REPITION. IT IS VERY FRUSTRATING FOR THE
CHILD AND THE PARENTS. I HAVE MUCH OF MY INFORMATION FILED, BUT WOULD BE GLAD
TO SHARE

SUBJECT:  Re:hypoplastic cerebellum  Date:  97-09-18 00:27:10 EST
From:  ETZ123

I have a daughter that sounds a lot like your children.  We have been given
the vague diagnosis of pancerebellar dysfunction.  But according to her MRI
she also has a small cerebellum.  Colleen is only three now so we're not sure
where she is headed, but I would like to talk to you further. Please E-Mail
me at  [e-mail]

SUBJECT:  Re:dyssemia  Date:  97-09-21 00:27:56 EST
From:  EHorvath35

I have a book on this topic

SUBJECT:  Fragile X  Date:  97-09-21 00:34:11 EST
From:  EHorvath35

If you need info drop me an email....

SUBJECT:  cytomegalovirus (CMV)  Date:  97-09-22 22:36:54 EST
From:  Carleolady

Does anyone know of a message board/support for parents of children with CMV?
Please email me.  Thank you.
Elaine
[e-mail]

SUBJECT:  FRAGILE X basic info&website  Date:  97-09-25 09:16:03 EST
From:  SSKM


Basic Information on Fragile X Syndrome

Genetic
- X linked, hereditary condition associated with fragile site on X chromosome
- usually affects males more severely than females.

Physical (may or may not be seen)
-normal statue                             -high arched palate
-broad forehead                            -mitral valve prolapsed
-elongated face                            -enlarged testicles
-large, prominent ears                   -hypotonial (low muscle tone)
-strabismus (eye)                         -loose connective tissue
-soft fleshy skin                            -flat feet
-seizures                                     -cronic ear infections

Behavioral (may or may not be seen)
-hyperactivity                                -poor eye contact
-short attention span                     -difficulty adjusting to change
(transitions)
-hand flapping                               -anxiety
-hand biting                                  -resistance to being touched or
held

Childhood Development
-wide spectrum of cognitive functioning
-developmental disabilities
-fine and gross motor delays and sensorimotor problems
-most learn visually
-relatively strong imitation skills
-up to 15% are autistic

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hi,

  Below is some information on websites and phone numbers...if you do not
find what you are looking for..please contact me again. Also, please feel
free to share the information with others.

  Also, I do a chat on FXS on aol,,, come by anytime, they are Thursday 10:00
pm est, and Saturday 10:00 am est. In Members room, Life category, room named
Fragile X Syndrome.

   FRAXA Research Foundation Home Page
  Web- http://www.fraxa.org
  e-mail- [e-mail]
  ~~~~~~~~~~~~~~~~~~~~~~~~
   Nat. FX Foundation   Program details for National Fragile X Founda...
  Web- http://www.medhelp.org/www.fragilex.com
  e-mail- [e-mail]
  phone #- 1-800-688-8765
  ~~~~~~~~~~~~~~~~~~~~~~~~~
   FragileX Advocate
  Web-http://www.fragilex.com
  phone #- 1-800-434-0322
  ~~~~~~~~~~~~~~~~~~~~~~~~~
   Fragile-X Listserv (fraxa)
  to join send e-mail to:   [e-mail]
  body of letter (type excatly): subscribe to fragilex
                                           <include you e-mail address and
name>
 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 [e-mail]

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 [e-mail]

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. [e-mail]

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
[e-mail]  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:  [e-mail]    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
[e-mail]     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?