Thanks....
Its nice to know I am not the only one.. On top of SS is is believed that my son
has SID as well... sensory intergrative dysfunction... When was your kid
diagnosed?
thanks again
lisa


----- Original Message ----
From: miranda barone <baronemiranda@...>
To: sticklersyndrome@yahoogroups.com
Sent: Thursday, November 16, 2006 7:19:18 PM
Subject: Re: [Stickler Syndrome ] New to the all of this stickler
stuff.......Help!!!!.

My daughter has SS and noone in the family has SS.
MYself and my husband had the test done ,
They say she is the first in the family.
The only thingh I can say to you is the fact you know he has SS will help you to
monitor him , and I really suggest to read the book the Elusive Sindrome.
TAKE CARE
Miranda

yellowdaisy162002 <yellowdaisy162002@ yahoo.com> wrote:
Hi everyone...
I have been searching for answers for the last 2 yers with my almosst
4 year old boy.. About 6 months ago a doc diagnosed my son with SS..
he has some facial features and myopia in both eyes. he has no hearing
or joint problems as far as we know... on top of that my son has
seizures and he does not talk at all..... so the are saying he is
delayed and and has SS.. he is soooooo smart so the delay is just in
gross motor skills. i was woundering if anyone out there has gone
through something simular.. I could use some advice or just someone to
talk to.. i feel like there is nothing more i can do... as far as I
know i dont nor does my husband hve SS. and I dont know of anyone in
my family having SS.. could this be a misdiagnoses? ??
Help
Lisa

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