Re: kids with CMT

[Guest guest]

Hi ...thanx for writing...... is 35. His first of (6)six operations is

scheduled for Feb 10th. How's Adam doing? Did he have more than one procedure

done on his first foot?

cyn

[Guest guest]

Hi ,

I am new to this site and I was just reading one of your messages. I to have a

15 yr old son. We just found out in Nov. that he has CMT as does our 6 yr old.

Our 11 yr old does not have it. I keep reading about surgery. What exactly is

it? We have not gotten that far with the Dr.'s as of yet. Been just got AFO's

a month ago. Thanks!

[Guest guest]

,

My son Leo is 4 years old. He got admitted into the Shriners Hospital

at Houston, Texas like 1 and 1/2 ago. They say that they've had only

like two cases of CMT there, but that they will help me find treatment

for my son. Whatever they tell me, I will share it w/ all of you in

case it can help somebody.

Does anybody know if physical and occupational therapy is helpful for

CMTers?

Anita, mother of Leo

[Guest guest]

Hi Antia -

Physical Therapy has helped in the past when he was having bad

muscle spasms and to increase stamina. Occupational therapy helped

maintain his hand strength for a while and now we do it at home with

therapy clay. Unfortunately his fine motor skills have degenerated and

holding a pen is difficult. I am certain that if he had been diagnosed

at 3 rather than 9 those extra 6 years of both kinds of

therapy would have helped him tremendously. In the meantime he keeps

plugging away...

Please do share what you learn from Leo's docs...that's how we all keep

up to date, and we can share with you if it's something we have tried

before.

Looking forward to hearing more...