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
answers once we talk to him. Thank you for the information. I really
appreciate it.

Joni Trout <crazytrout@...> wrote: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 you seen a genetisist? We did see one, but all he did was tell us
that with the family history it was obviously sticklers. He also said that
there is testing available but that it is very expensive and not always
reliable. I do think that just sitting down with a genetisist would give you
more of an idea of what you may be facing. I hope I have answered your
questions! Good luck!

>From: "tarawells1029" <tarawells1029@...>
>Reply-To: sticklersyndrome@yahoogroups.com
>To: sticklersyndrome@yahoogroups.com
>Subject: [Stickler Syndrome ] my daughter
>Date: Sun, 31 Jul 2005 04:46:59 -0000
>
>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.
>
>




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