Hello there, My name is Casie, I have an 20 month old son who also has prs and
ss. At his birth we expected a cleft palate due to my family history. But that
would be all well no it wasnt all he had....and yes he does have a cleft...but
that . I was then told that I must have Sticklers bc of what skyler had....so
here I was at 21 thinking that all my child hood made sence and all it took was
to have a little boy! I have HORRIBLE eyes, but was never aware of the retina
possible detatching and so that was never looked at, and still I havent been
able to find a doc up here that knows what the heck it is. My mouth is
incrediably small and I went through 4 pulled teeth and 3 years of braces and
you cant tell that I had them :( depressing huh. I hope all goes well in what
ever it is you decide for her, unfortunatly I cant be of more help to you. Hang
in there, Casie mom to skyler 20 months prs ss trach gtube
----- Original Message -----
From: sarasmom101596
To: sticklersyndrome@yahoogroups.com
Sent: Tuesday, April 20, 2004 12:41 PM
Subject: [Stickler Syndrome ] New to Group


Hi, I'm the mom of a 7 year old recently diagnosed with Stickler
Syndrome. She was diagnosed at birth with Pierre Robin Sequence and
has had a couple of cleft palate surgeries and ear tubes, etc. I
tumbled to Stickler because of her other symptoms. Doctors could
never give me any definitive answers. However, I am having a
difficult time trying to figure out how to corral all specialties
into one group and get a doctor to coordinate the whole mess. She
has glasses because of severe myopia and we are continually watching
for detached retinas. Because of the looseness in her joints, she
has trouble walking and running. Being in first grade though, she
does get teased a lot about the way she runs. She has moderate-severe
hearing loss in her right ear and we are in the process of getting
hearing aids. I feel like I'm overcome with details and am not sure
where to turn all the time. Also, because of the size of her mouth,
due to both Pierre Robin and Sticklers, she has dental problems. We
are having a hard time trying to get insurance to cover any of this,
because it is not a medical expense. I feel her need for removal of
teeth because of her short jaw and braces is a direct result of both
Syndromes. Has anybody ever had any dealings with this aspect?



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