welcome Janet and daughter

[Guest guest]

Janet, I feel for you and your daughter. She must be a strong girl to go through

what she's been through. I'm sure there is somebody in this support group that

will talk with her and make her feel better about herself. The K.I.D.S project

she has started sounds like a wonderful program. That in itself should keep her

happy. I hope if any of my grandaughters should develop CMT, there is somebody

to support them and not ignore it. Taking extra calcium might help the bones

develop better. They say my back has reversed its arch, but nobody will say CMT

is the cause. I'm not sure myself what caused it. I have a lot of trouble

walking and the more I think about it, I was a klutz in my younger days, now I

understand why. Take Care of Yourself, your daughter needs you. And keep

posting.

Debbie

[Guest guest]

Hi Janet,

My name is Dayna and my 9 year old daughter has CMT ( not sure the type). She

also falls quite a bit and has a lot of fatigue. I have had problems with the

schools, but fought until I received IEP for her. That has helped alot.

My daughter stays upbeat, but she has trouble understanding why she is so much

weaker than the other children. She wear AFOs which seems to help the falls and

the fatigue. We go to the MDA clinic in Houston. They are wonderful. If there

is a clinic near you, it would be worth your while to go. Becky got to go to

the MDA camp last summer and had a ball. She is looking forward to it again

this summer.

She has been on the Vit C for a few months, but I had to take her off for awhile

because she had some stomach problems. She did seem to have more energy when

she was on it. Your daughter is not alone. There seems to be many children

with this disease. This group is great to get ideas from and information.

Dayna Bandy

[Guest guest]

Janet,

Welcome to the group, I know you will find help here. Do you know what type of

CMT your daughter has? I too joined a few months ago looking for help and I

have found it. I am 35 and have CMT type 1A, my daughter has not been

officially diagnosed but I can tell she has it by the symptoms she has. She

trips more then the other kids, get tired alot and wakes up screaming at 2:00am

with pain her feet and legs.

When I started the group I took Gretchen's and many others advice and checked

the old posts on this site and I found a few people that had started to take

vitamin C in large does to help with the CMT. I will tell you in my case and my

daughter's it has helped alot. She has not tripped as much and over the past

couple of months has not woken up with the screaming pain that she used to have.

She is 5 years old and takes 250mgs twice a day. I take 3000mgs twice a day of

time release Vitamin C. For myself it has help alot in other ways, like I can

breath better as my chest muscles have gotten stronger, as well as I do not trip

as much, and then there the energy part. I have had more energy in the last few

months then in the last 10 years.

I hope this helps. Our warmest prayers will go to you and your daughter.

Remember we are all in this together.

[Guest guest]

Janet-

Your daughter sounds delightful. Going through learning to deal with an illness

like CMT and thinking, at the same time, of what she can do to help others is

incredible. I don't know many adults who could do that.

I remember being diagnosed at age 12. That is such a tough age self-image wise

anyway and to find out your body is not the same as many others around you is a

lot to deal with.

Your daughter has something though that many of us did not have, a mother who

apparently openly talks to her daughter about this and who acknowledges the

difficulties. I hope your daughter finds some people her age she can communicate

with about CMT. That is so important.

Us fossils (a term my teenage daughter has applied to her mother and me) can be

understanding and caring, but we can not replace the need for her to have other

teens like her to connect with.

Jim