teens with CMT

[Guest guest]

There were a few " organized " teen support groups at one time, but don't

think they did much; instead many joined as full members, and now

also email or IM each other privately. Also many of our 'teen' members from our

early days are now young adults.

~ Gretchen

[Guest guest]

, I would love for our son's to email, I'll have to get Austin's email

address and send it to you. They aren't doing the nerve biopsy Austin yet, they

started with the genetic profile first. Austin just started having symptoms

within the last year, I would always remind him when he stepped how to do it, he

finally

told me " Mom I try, but I can't control it no matter how hard I think about it. "

So here we are, waiting for the genetic profile to come back from Athena. No one

in my family has it (maternal side), I don't know

my father or his family, so I don't know if he has it in his family or not.

Really never had the desire to know him, this was his choice, but now I feel

like I should find him for the benefit of my children's health.

Austin doesn't have too much hand weakness, his fingers are contracting, so we

do stretching excercises on them. He has a lot of joint and muscular pain in the

morning, get up and down the stairs hurts. He takes Ultram ER at night before he

goes to bed, he

has his good days and his bad, as everyone does.

Anyway, I'll stop chattering so much! Have a Merry Christmas.

[Guest guest]

Hi Lissa,

I have CMT and I have three children with CMT. Ages 17, 14, and 13.

Your daughter needs to stay warm. You need a health care plan at the school,

you also need a 504 plan under " Other Health Impaired " . Have her day modified

especially for cold mornings. I drive my kids to school so they can be in a warm

car not a cold bus. Even at that they get the cold hand problem. I found gloves

that are battery operated.

So many different modifications can help her day. Remember 504 plan and a health

care program. The school needs to jump on this. Call them as soon as you can and

get the meetings scheduled.

[Guest guest]

Hi Lissa,

I am sorry your daughter is having so much trouble. My son is 14 he has trouble

with his hands as well (he has trouble with his feet too). His school lets him

use a lap top so he never really has to write. For math the teacher got special

paper that another student uses so it makes a copy when they are taking notes.

They also let him dictate his homework to me - if it has to be hand written.

He also started occupational therapy, the therapist is great and gives him lots

of things that help his hands. He also bought him a shoe horn and special shoe

laces that don't need to be tied. Ethan is always cold sometimes his feet look

blue to me. He has lots of pain too.

Just know you are not alone.