parent's challenge

[Guest guest]

Hi ,

My daughter does not wear AFOs at this time. She did for two years before the

surgery. I do wonder how long it will take before she has to wear AFOs. She

complained about weakness in her legs which was one of things that sent us to

the doctor. Because I have MS though, I assumed she might have that. Many tests

later we found it was CMT.

I think it would be very hard to be a teen and have to wear AFOs. She had

already had two sets of casts (when she was 4 and 8) to " stretch " her muscles,

but each time that didn't last. She wore the AFOs because they thought her

walking might be a learned habit and her mind just needed to be retrained. That

also did not work. When her muscles started getting tight again they did the

surgery to lengthen them in the calf and behind the knee.

So far it has been good. She does lots of stretching now to try to keep as

limber as she can. It is a struggle all the time as I am sure getting your son

to wear his AFOs is.

Dd also sees an OT and PT now that she has been diagnosed with the CMT. Mainly

because the neuro was alrarmed at the weakness in her legs and arms. We were

quite baffled by the CMT as we had been told all along that as soon as she

stopped growing her problems would go away. We are pretty much out of the angry

stage now and are just trying to accept it all.

Since I have MS, it has been good that I can talk to her about having a chronic

illness and how to not let it take control of your life. In all of my readings,

that seems to be the difference between those who have adjusted well with any

chronic illlness, whether it is CMT or MS or diabetes, and those who have not

adjusted well.

Do they have the disease or does the disease have them? That is the biggest

challenge we parents have ... helping our kids become normal well adjusted

adults who happen to have a disease.

I wish you well with your son. Please do post again to me. It is

encouraging to hear fron all the parents who have children with this and how

they manage. Dd has also enjoyed emailing a couple of times to various others

her age who have CMT.

Robin