Hi
I have a 9 month old with SS. He doesnt have any eye problems as of right
now. He does have mild/moderate hearing loss and has been since birth. Samuel
has joint issues. His joints pop constantly. Sometimes his legs and arms lock
up on him. We have to massage them and work out the stiffness. Samuel didnt
have clef palete or lip but does have an unusual high arch. He has facial
symptoms of SS.
I would truely trust your instincts. I know with my son, most doctors dont
know anything about SS until they look it up in a book. Most times we educate
them on the syndrome. How old is your son? Nice to hear from another mom of an
infant.

Jacqui



sarahahm <sarahahm@...> wrote:
Hi All,
Thiis is the awesome support groups for the anxious parents like me.
My son was born with a cleft palate. which is associted with Pierre
Robin sequence(PRS) .

We saw an ophthalmology yestersday to have him checked up for
Stickler syndrome.
Ophthalmology did an examination on his eye and found that while
normal newborns usually are more far-sighted, my son seems to have a
MILD case of myopia. However she did not make a
firm diagnosis at this point and said that this may or may not be an
indication on stickler syndrome, as first of all newborn eyes undergo
a lot of changes in the first few months and secondly he has a mild
case(his stats are -1.5 +1x for both eyes). And ask us to have his
eyes checked again in 6 months.

Could anyone here tell me more about it.
What could we expect in the coming months?
Are there any other signs we can look for in the diagnosis of
sticklers other than PRS and myopia?
BTW he doesn't have any other apperant facial/physical feature
realted to SS and had also passed his newborn hearning test.. Infact
his genetics told us his cleft would most likely be an isolated case
and would not be associted with any syndrome.
Thanks
Sara










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Blaine 14 graduating from 8th grade this year
Kelly 13 graduation from 8th grade too....ADHD, OCD, ODD crazy kid
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Aliya 8 (almost in March) glad she isnt the baby anymore
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