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

[Guest guest]

Welcome Leena.

I am new to the group also and I am fighting the battles you talk about

every day with my daughter. She is 8.5 now and was diagnosed with CMT when she

was 4. Her feet were fairly severly deformed by the time she diagnosed so she

had surgery to correct that around her 5th birthday. She has severe foot drop

and wears AFOs to correct that.

We keep my daughter as active as possible, biking, hiking, swimming and

climbing. The more activity the better. She is in physical therapy. We do range

of motion exercises with her ankles and toes every night and we do sit-ups every

night to maintain her core strength.

She is not on a special diet, however, I feed her very healthy foods. She

doesn't eat a lot of fats or processed foods. She eats healthy carbs, fruits (a

lot), protein and veggies (when I can get her to eat them).

A couple weeks ago I started her on vitamin C and E and essential fatty acids.

She is taking 3000 mg of C, 800mg of E and the EFA's. I don't know what helps

and what doesn't but I will never stop trying everything that I can to help and

protect my daughter. She is my life and I do not want to see her get any worse

than she is today (she has the most severe CMT that I have seen in anyone so

young).

Good luck with your son. I believe the more activity the better, I also believe

in the vitamins and in a healthy diet.

.

[Guest guest]

Hi ,

My son Adam also has a severe childhood CMT. He needed AFOs at 4 years old. He

is now 14, he is still severe but for the most part I think the damage was done

years ago and he has maintained for the most part. What type does your daughter

have ?

[Guest guest]

Hi ,

Unfortunately, I don't know what type she has. The neurologist told me

that because there was no cure he didn't do the tests to find out,

claiming it didn't really matter. I now wish that we knew and I am

thinking about asking for testing in the future. He does believe that

it is a form of type 1.

She also has been maintaining for the last few years. I am very afraid

of her upcoming growth spirts as I was told this is when CMT can

really get worse.

I have a question about the AFOs, maybe you can help or have some

input. Madison has been wearing AFOs since she was 5 and she is 8.5

now. Her AFOs come up almost to her knees and they really help with

her foot drop and provide her with stability, however, we have noticed

recently that her lower legs are getting even thinner than they used

to be and I am wondering if the AFOs are contributing to that.

She does have muscle wasting from the CMT but with the AFOs she never has a

chance to even try to use those muscles and I am afraid that they

are contributing to the wasting. Do you have any thoughts on this?

.