Sticklers runs in my husbands family. My husband has SS. He suffers mostly from
eye problems. He has lost one eye and nearly blind in the other. He's got
joint/muscle problems too. He does have the facial features.
As for my son, we knew pretty much before he was born. The doctors said it
was around 80% chance. Well, at birth, he showed the facial characteristics. At
2-3 months, we were diagnosed. It wasnt a suprise for me. I didnt have to go
through denial phase. We go back to genetics in June.
Congrats to your new baby. Lets keep in touch.
my yahoo ID is momofbksa2001
Im sending a pic of my son Samuel
Jacqui
sarahahm <sarahahm@...> wrote:
Thanks for your reply
MY son is 7 weeks old. He doesn't have any facial features associted
with sticklers realting nose, cheeks or eyes, except for his pierre
robin. He did pass the newborn hearing test at birth and his joints
seems fine up till now.
Can I Ask , do you have sticklers in your family???
AS we don't have any symptons or case of stickles in our family.
Most of my immedaite family members wear eye glasses for mild to
moderate nearsightness though.
At what age and how they diagnosied him of sticklers??? I wish all
the best for your son.
Sara
--- In sticklersyndrome@yahoogroups.com, Jacqui <momofbksa2001@...>
wrote:
>
> 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
>
>
>
>
>
>
>
>
>
>
> <a href="http://lilypie.com"><img
src="http://by.lilypie.com/e6T6m7.png" alt="Lilypie 6th to 18th
Ticker" border="0" width="400" height="80" /></a>
>
> Blaine 14 graduating from 8th grade this year
> Kelly 13 graduation from 8th grade too....ADHD, OCD, ODD crazy
kid
> Shelby 11 No problem child
> Aliya 8 (almost in March) glad she isnt the baby anymore
> Samuel 8 months such a happy, handsome little baby
>
>
> ---------------------------------
> Don't pick lemons.
> See all the new 2007 cars at Yahoo! Autos.
>
> [Non-text portions of this message have been removed]
>
<a href="http://lilypie.com"><img src="http://by.lilypie.com/e6T6m7.png"
alt="Lilypie 6th to 18th Ticker" border="0" width="400" height="80" /></a>
Blaine 14 graduating from 8th grade this year
Kelly 13 graduation from 8th grade too....ADHD, OCD, ODD crazy kid
Shelby 11 No problem child
Aliya 8 (almost in March) glad she isnt the baby anymore
Samuel 8 months such a happy, handsome little baby
---------------------------------
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