Re: care for children with CMT

[Guest guest]

,

Thank you so much. You have succinctly stated what I've been trying to tell the

doctors. We need a " game plan " . We live in Springfield, and I found out there is

a doctor at the St. Louis Children's Hospital that has treated children with

CMT. All this red tape to get through, but I am excited to talk with a doctor

that actually knows something! I did switch my son's PT, and though she doesn't

know anything about it, she is researching it, so she can give him the best

therapy possible. It is a blessing and relief to finally have a health

professional care! I think sometimes that his reg pediatrician will tell me they

won't see him anymore because I'm constantly calling for referrals and such.

I wanted to get my son tested a 2, because I thought there were signs back then,

but my ex-husband refused.

Jennie