children with CMT - to

[Guest guest]

Hi and welcome,

I have 3 kids with CMT. They are 14, 12, and 16. They were diagnosed at 4, 6 and

5. I have been there done that still doing it. Let me know if I can help you.

[Guest guest]

,

Thanks so much for responding to my post. Emotionally, how do you deal with it?

Have your children had any surgeries? Are they mobile? or do they use devices?

Has the desease progressed a lot?

[Guest guest]

Hi ,

Emotionally for me it is hard to deal with. I take Celexa for depression.

Depression medication makes my life so much better. I need to stay positive and

hopeful. I try to think of CMT as temporary. I look at new treatment options

and do what I can do to make the kids have a happy life. I really think they

will have the best of both worlds one day. My hope is that they will have

compassion for others and appreciate a new level of mobility and health.

My older son (16) was hit by a car and in a cast for a long time with two broken

legs. After he healed from the broken legs he did need to have his arches

lowered. He is glad he had the surgery. He gets around pretty good now. He has

the option of wearing AFOS but he won't wear them. He wants to try and build

some muscle up. He is very atrophied from the casts. We added it up and he was

in a cast for 12 months total.

Adam (14) has AFOS. He is my most effected CMT child. NOTHING keeps him from

having a good time. He amazes me. He has a pretty good attitude toward his

disability. I guess he has accepted it. Better then I have really.

(12) is pretty mild. She walks slow and with a bit of a gait problem but

not bad.

CMT with my kids has gone slow. Adam was always more affected he is still more

affected. Spencer's accident did aggravate his CMT weakness but as far as

surgery he always has had really high arches so I think he would have needed

surgery no matter what.

is growing taller and that always makes CMT seem worse. So her CMT is

slowing her down a little more these days. In the beginning of the diagnosis it

seemed like big changes. After time it all becomes more normal.

How are you dealing with it all?