Re: Kids, pain, DAFOs and exercise

[Guest guest]

Jennie,

My son was very effected at the same age as your son. He also had pain. The pain

did subside after time.

But I think you need to have his orthotics checked for comfort. They should not

hurt even after having them on all day. They may need more padding or a better

fit. Possible a different style. We used high tops as long as we could for my

son. Then we went to very comfortable DAFOs. They may actually be causing some

of his pain in his legs and feet.

Trampolines can make the CMT kids temporarily weaker. It takes a while for the

muscles to recover after jumping on one. I don't see why a PT would even use one

for a CMT kid.

My Dr. never had my kids go to PT because he believes as long as they are

playing and being kids that is all the PT that is needed. Swimming is fun and

great for CMT kids. I had to explain CMT to my sons at a young age because they

were frustrated thinking they were just not good at doing certain things.

This is a hard time for you and your son but it will get easier once you get the

hang of constant change.

(mother of 5, 3 with CMT)

In a message dated 12/5/2009 9:08:55 A.M. Pacific Standard Time,

jenyelenore@... writes:

Hi, my name is Jennie.

The genetic testing recently came back that my 3 yr old, Jedidiah, has CMT

1A. Though, I didn't really need the tests to know it. (The doc's did)

Jedidiah struggles with his balance and leg and foot pains. He is 47 months,

but has the gross motor skills of a 34 month old.

He started Physical Therapy a couple months ago, and has orthotics for his

shoes. We have been to several neurologists, but they all say the same

thing- it won't affect him til he's older. They don't listen to me when I tell

them it affects him NOW.

How would they know? They don't live with him and see his pain when he

sometimes just falls down because of the pain in his legs and feet; and their

hearts don't break when he tries desperately to do something and can't. His

fine motor and mental development are at and above target age.

Jedidiah's father, tells me not to worry about it, just to tell Jedidiah

to man up and deal. I know there is no cure; I know it is about managing the

symptoms. What I don't know is how to help my little boy and if I am doing

enough. No doctors or even his PT know much about the disease, and either

don't want to learn or don't care to find out how to help or the proper pt.

The daycare left his shoes on one day and didn't take them off, so when I

picked him up to take him to pt, his feet were raw and red from the

orthotics. I took his shoes off in the car, and when we got there, his PT saw

his

feet, and yet still made him jump on a trampoline (or attempt to); the

whole time my son was bawling (he rarely cries).

Needless to say, I am in the middle of switching PT's. However, the new

one doesn't seem to know a thing about CMT either. Just waiting to see if she

is willing to learn. Aargh!

Guess I've been rambling on... Would like to know if anyone has ideas,

suggestions, etc...