connecting parents with CMT kids

September 17, 2005

Hi Sally,

Thankyou for the warm welcome. I am happy to be able to talk to other mothers

regarding issues about our children who have CMT.

My daughter started wearing her mafo's(half of her waking hours on/ half off)

approx. 1yr ago. She loved them and wanted to show everyone ,especially because

they were detailed with princesses.

She was able to do everything and anything wearing them as she did before. It

was when she realized how tired they made her legs that she would beg to take

them off because she couldnt walk anymore. When we go to put them on she will

state " they make my legs so tired " I tell her she just has to wear them for a few

hours.

So she will then play but continually ask " Is it a couple of hours? " I never saw

the benefits of more stamina, just complaints.I have had them checked and

rechecked for proper fitting and they have been fine.We are going to the drs in

a few weeks and this is one of my issues to discuss.

Katelyns bed time is 8:30p. I couldn't make it any earlier because she takes a

2-3 hr nap in the afternoon,waking at 3:30-4:30p. I have tried to wake her after

an hour but see cries and says she is too tired. If she gets up she is so

irritable and cranky that I found it better to let her rest till she is ready to

get up.

I also have a 7 yr old who gets home at 3:20p and has homework to do. Plus an

18mon old who is getting up from her nap, and of course everybody wants mommy.So

I found when I let Katelyn take her full nap we are all alittle bit happier.

She still is getting 11hrs sleep at night and only has 1/2 day

kindergarten(9:05-11:40pm).

Do you think that is not enough? She did state in a round-about-way that she

pushes herself so hard at school by the time she gets home she is exhausted and

basically has drained herself. She is very shy and does not communicate her

needs in school. She told me when they were walking back from the playground her

legs were so tired she thought she was going to fall.

I told her she has to tell her teacher so she can sit and take a short rest but

she said she is to afraid. Of course I told the teacher but she needs to learn

to communicate her needs .So I am hoping that once I can help better adjust her

school plan , with a IEP or 504 , things might get alittle better.

louise - mother of 3 beautiful girls

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