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Hello, New & In Need of Some Info please   Message List  
Reply | Forward Message #86 of 810 |
Hi there, I have been a member of this group for a while now but
haven't actually posted a message. Both myself and my son were born
with Pierre Robin Syndrome. I was told all ym life (up until I had
my son) that it was isolated pierre robin syndrome. however when my
son came along also with pierre robin syndrome, the geneticists got
involved. Although they ahve done lots of testing, all tests came
back negative. However the geneticist beleives that we may ahve
partial sticklers syndrome. He thinks that we'll need to wait and
see what happens in future generations, what symptoms will manifest
etc.
I have quite a lot of features of sticklers, pierre robin syndrome,
facial abnormalities, hearing loss to name a few and Brendan has
pierre robin syndrome, small toe nails, tapered fingers, crinkled
tops of his ears for eg.
The question I need to ask is that I'm sure I read somewhere that
mood disorders/depression etc can be a symptom of sticklers too. But
I can't for the life of me find this info again. Does anyone know if
I'm right in thinking I have read this, and where can I fid the
info.
thanks
Fay
xxx




Thu Apr 24, 2003 9:18 am

faybaby24202
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Message #86 of 810 |
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Hi there, I have been a member of this group for a while now but haven't actually posted a message. Both myself and my son were born with Pierre Robin...
faybaby24202
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Apr 24, 2003
9:18 am

Hello I was told by a doctor in St. Louis at Childrens that it is common because my son experiences it. He is on a antidepressent now and it is of course...
val575
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Apr 26, 2003
10:21 pm

Hi Val, as I just put in my post to Fay, Ty is going through this now too. We are going to homeschool him for awhile, he has just been through too much...
sheapc
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May 25, 2003
9:21 pm

Hi Fay, re the testing - it is very important to note that there is no test for Stickler syndrome. They can test to see if a couple of the known mutations...
sheapc
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May 25, 2003
9:17 pm
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