My Introduction

[Guest guest]

Hello to All,

My name is Chemaine Plauche'. My four year old daughter was just diagnosed with

CMT. We have seen therapists and neurologists since she was 18 months. She

didn't walk independently until after she was two. Today she is doing quite

well. She basically just seems delayed with all her motor development by a few

months. She is still not potty trained.

I would love any advice. I can't find alot of research for young children with

CMT. We are just not sure of what our next step should be. Our neurologist does

specialize in peds, but not really in CMT. She only sees MD patients once a

month. We were wondering if there are any Pediatric CMT doctors out there. As

any mother, I just want to do everything in my power to ensure my daughter has

the best care possible.

Thank you for all of your help. I'm looking forward to all the support and

guidance from this group.

Sincerely,

Chemaine Plauche'

[Guest guest]

Hi everyone,

I'm new, my name is Amelia. My husband has CMT and I'm having our

second daughter in Feb. Our first I believe has CMT. She didn't

walk until 19 months and still doesn't really run or jump well. I

assume she has it since the chances are 50/50. Chemaine I've had a

hard time finding any good info. about very young children with CMT.

I also have alot of fears and want to do the very best for her and

let her lead the most normal life possible. My husband endured a lot of pain

because of severe deformities, he almost couldn't walk by age 18 and had to have

a triple athrodesis (I don't know about the spelling) then.

He tells me braces would have helped his deformities but then I read that braces

can makes the legs weak. I'm talking to her dr. about it and he has several

patients with it. If anyone has any info. about their own young child with CMT

or how to prevent the painful deformities and surgeries I'd like to hear from

you!!

I don't know if there is anything we can do but I stay up at

night worrying and wondering. My husband is doing fine now, he has

his masters degree and teaches 5th grade, his feet cause him some

pain and he gets tired more frequently, he just had a screw removed

from one foot.

AMELIA