Need advice..... Hand involvement in my daughter

[Guest guest]

Hello

Yesterday our daughter told me while doing homework that her hands

were not working correctly, She mentioned that they felt weak. She

was not able to grip the pencil firmly enough and experienced weakness

and fatigue of her hand, I just observed and she had a nice long soak in the tub

then off to bed.

This AM she was finishing up a few lines of homework and again

repeated the complaint.

I know from my own CMT that symptoms all over my body seem to appear

and disappear including the hands. I have hand issues (CMT 1A) but

mine have been gradual.

What did those of you with kids with hand involvement do?

She has enjoyed privacy with her disease regarding gym class. We have

not shared her condition and she has been able to pass. We have

spoken about this option and up to now it is the one she wished to use.

I respect her wishes as looking back I felt the same way at her age.

Now being in 4th grade at a parochial school where writing homework is

a massive issue we may have to change our direction.

Parochial schools are not the best for special needs due to their 1

size fits all expectations.

If you have walked this path with your son or daughter would you mind

sharing your experience or thoughts.

Tammy