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?