Re: CMT children and school issues

September 15, 2005

Hello there at mylittle angel email I am unsure of your name.

However, here is what I did. It is quite a challenge in the school system with

children with CMT or at least for us. This is why we now homeschool. Anyhow when

my son was in school they refused to give him ot / pt so we talked to his

orthopaedic surgeon and he wrote a letter all about cmt and how the muscles will

weaken more and more over time and if given the changce to have ot/pt this can

only help strengthen and maintain the muscles. Of course there was a lot more to

the letter---you may ask a doctor to help you write a letter. If the doc does

not agree go to another one. It is a long haul but it can happen.

You may even consider writing a letter of why your child needs these services. I

won in the end of why my child needed ot and pt. You see some times the school

systems do not want to pay for it or do not have the funding and that is why

they deny the services. So keep pushing them and they will get sick of it

eventually and you will win. Another place to try is your state board of

education.

Let me know your name sometime. I'd be glad to help you with anything. Here at

we use our first names, it helps us get better acquainted and you'll get

more responses too.

Heidi mother of 5

September 15, 2005

HELLO HEIDI,

My name is louise, sorry for not stating it sooner. Thankyou for your

advice. We are actually seeing her Dr. in two weeks and I will ask him for a

note on her needs for pt/ot. I have been trying to find an article on the

benefits of pt and ot for a CMT child and how it will help them function better

in the school setting.The school seems to imply that basically there is no need

for services because she can navigate through the hall and around the

classroom.It didnt matter that she feel twice within a 1/2hr pt eval. Nor did

they feel that her medical records stating she has frequent falling, serious

gait deviations and a lot of decreased ankle strength and neurologic control, is

significant enough to qualify her for services. I am in the process of fighting

them right now, it just angers me that I have to go through all of this because

her CMT doesnt fall into heir " broad spectrum " of diseases and disorders.

Again,thank you for sharing your knowledge and support. I will continue to

fight until my daughter gets what she is entitled too.

louise - mother of three beautiful girls

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