Thanks Melanie. We live in K.C. and all her care so far has been at Children's
Mercy Hospital. They're a great place to go, but there are so many specialties
involved, it gets kind of confusing! We've only known about Stickler since
November, and we have so far addressed the sight and the hearing. We know
orthopaedics is next, but haven't progressed that far yet. Thanks for the info!
-- Megan

Melanie <Meljbodin@...> wrote:Where about are you from? One place that i
would recommend is
Shriners Hospitals and Clinics if you are having any problems with
insurance.. They specialize in orthopedic (bone) conditions in
children-and im sure they would be more than happy to see your
daughter. There is no need to have insurance- Shriners offers free
health care to kids with orthopedic conditions, and if you have
transportation issues, they can also drive you there and pick you
up. The one thing that is needed is a "referral" , which i believe
you can do yourself. I can check into it more for you if you would
like, but i do know theres a website.. i believe it is
www.shrinershq.org, if that doesnt work, just do a search for
shriners hospital.




--- In sticklersyndrome@yahoogroups.com, "sarasmom101596"
<sarasmom101596@y...> wrote:
> 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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