--Hi I feel for you being the Mom of a child with sticklers also.My
son has had 5 surgerys since august and has more to go.All of his
problems so far are in his eyes.He is in danger of loosing his left
if we cant get the pressure under control.I wanted to let you know
what I have found for help with some of the bills that come along
that insurance did not help us with..I found an agency called
children with special health needs..Being in Vt. Iam not sure if they
are in all states or not but they are great..Help with hotel
stays,milage,and anything that insurance wont cover.I wish the best
for you and your family. -
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?