Re: Pain in my daughters legs

[Guest guest]

Deanna,

I have had CMT all of my life. To my knowledge, my parents noticed problems

with my legs and feet early on, but at that time the doctor I was being taken to

had no answers for my problems. It wasn't until I was 12 that I was taken to an

orthepedist and a neurologist and finally diagnosed.

I was then made to wear braces on my legs that hurt like hell and made me the

butt of a lot of crap at school. Wasn't fun. I

would like to think that now days it should be better for kids who are

diagnosed, and their lives better than I had.

Everyone's CMT is different, so you won't really know what will happen or what

problems your kids will have. Hopefully with the right doctors and right

treatments, all will go well. Good luck to you, and think positive.

[Guest guest]

De -

We started noticing little thing to my son fairly young. He had a

strange gait while walking, ran/walked slowly, had low tone/floppy

muscles - had trouble sitting up straight when sitting/playing on the

floor. He also has a bend in his pinkys that the doctors say is a

symptom of the CMT genes.

It's hard to tell with kids what's regular growing pains and what's CMT.

Hope this helps,

Jim

[Guest guest]

Dear Deanna,

I have an 8 yr old boy who has CMT he suffers leg pain ALL the time

he is always asking me to rub his legs and his feet as they are so

sore especialy after school,please get your daughter checked out ASAP.

Roxanne

CONCERED MOM AS WELL