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Reply | Forward Message #287 of 810 |
My daughter was diagnosed with detached retinas in both eyes on
Friday
and had her right eye repaired same day. She also is profoundly deaf
and was born with a cleft lip and congenital heart defect. She has
not
been diagnosed with this syndrome yet. I was just searching the web
trying to figure out how all of her problems were related and found
information on Sticklers and it sounded like a match. What should my
next step be? What questions do I need to ask her doctor and which
one
would have the most info on this? The opthamologist,
otolaryngologist,
family doctor? Any help would be great.





Sun Jul 31, 2005 4:46 am

tarawells1029
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Message #287 of 810 |
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My daughter was diagnosed with detached retinas in both eyes on Friday and had her right eye repaired same day. She also is profoundly deaf and was born with...
tarawells1029
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Jul 31, 2005
4:47 am

In my experience I have definately found that the Opthomologist or the Cranofacial Surgeon had the most information on sticklers. I would ask, ask, ask. Have...
Joni Trout
jonitrt
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Aug 2, 2005
5:42 pm

We just returned from Kathryn's follow up from surgery and her othamologist is going to set up an appointment with a geneticist. Hopefully we will have more...
Tara Pope
tarawells1029
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Aug 3, 2005
9:57 pm

I have to say that it is very unusual for sticklers effected people to be born with a cleft lip, it is only clefting of the palate that is associated with...
laeticia_demorte
laeticia_dem...
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Aug 5, 2005
7:02 pm
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