mother of teen boys with CMT

[Guest guest]

Hi everyone...

I have 2 sons, 16 & 18, with CMT. It is x-linked in my family

and I am the first one to have boys in 2 generations. My maternal

great-grandfather had what was called " infantile paralysis " back

then. No one in my family ever heard of CMT until my oldest son was

diagnosed at age 13.

my oldest son still has alot of anger over his condition, and I

feel so frustrated and helpless at times. He's a sports nut and his

inability to compete in school sports has been devastating to him.

He refuses to wear his AFO's and I've to tell his PE teachers in

confidence about his condition, because he doesn't tell anyone.

my younger son, though not happy with CMT is much more adjusted. He

does his stretching and seems to work around his limitations pretty

well.

I've had my oldest in counseling and he is now on antidepressants,

on a trial basis. I try to encourage him to give online support

groups a chance..but he so far refuses.

Are there any parents of teens with CMT? I would love to hear from

you!

thanks, Carin