Can we stop / slow down progression of CMT at the age of 5?

[Guest guest]

Welcome Leena,

Your questions are hard to answer, but I'll try. Because of each of

our genetic mutations, CMT progresses differently according to our

unique genetic code. However, we are at the dawn of a new era when

alot of 'treatment' ideas are being worked on.

I was diagnosed with CMT when I was 10. I am now 54 and very active.

I had one foot surgery following my diagnosis and now wear custom

orthotics inside my shoes that help with balance and also with

my 'natural' ability to Toe-Walk. Only my feet are affected and have

always been. I have a slight indentation where my leg-peroneal muscle

is, but I have strong legs and workout in aquatics (in the pool) 6

days a week. I have had extremely minimally progression - my last

EMG/NCV testing showed my nerves are all normal and that I have

reinnervation (nerves have spontaneously rewired themselves) I am not

certain exactly how this accounts for lack of progression in my case,

but it seems to be true.

As a child, my doctor said to swim, bike and walk on the beach, all

of which I loved and still do. In swimming, it is important to spend

some time using a kickboard, for the legs. Walking on the beach

strengthened my ankles. I have only had one ankle sprain my entire

life - 3 years ago, on vacation, no less!

Re: stopping deformities - good quality shoes may help. Some of us

have also had surgery. Also getting Physical Therapy may help with

stretching, exercise and body awareness. I had tons of Physical

Therapy, as much as I hated it, I can now see its advantages.

Activities: Swimming, cycling are all good. Running for Harsh would

seem to be OK, just pay attention if he keeps falling. At that point,

you might consider AFOs for footdrop. Sometimes AFOs are offered as

the FIRST defense, where they might not be needed. A doctor wanted me

to get them when I was 21. I refused because I knew I didn't need

them. The doctor 'assumed' I did because I have CMT.

Strength training: As an adult I do this, I am not sure how to tell

you to have Harsh do it, except maybe in swimming. You should

definitely talk this over with a Physical Therapist to find something

fun for him, and age appropriate.

Diet: There is no 'set' diet for CMT, however, discoveries in the

use of Vitamin C and also E seem promising. You can read articles in

our Files on these. We have many parents here who will jump in to

give you suggestions too. As a child, I was given Ritalin for

fatigue, and also liquid potassium supplementation 2 times a day for

my muscles. About ten years ago I started taking 1000 IU of Vitamin E

when my Internist explained it has good effects on skeletal muscles

and blood flow to them. I also eat a low fat, low carbohydrate,

protein rich diet with lots of fruit and vegetables. I drink only

artesian water - a special water untainted by pollutants called

Fijiiwater.

Welcome again to . I am sure you will hear from other parents.

~ Gretchen/Founder-Moderator of