Re: schools and CMT children

[Guest guest]

Hi ,

The first time I took Ethan to the neurologist he also did blood

tests (not the genetic test). The one I remember was a creatine

kinase level, Ethan's came back at 80, which he said was in the

normal range. From what I have read it elevates as muscle damage

occurs.

I have also been looking online at all of the disability

information. It is very over whelming. We have private health

insurance also so I have a feeling Ethan would be denied. We have

been lucky so far, in that the MDA clinic has been picking up the co-

pays. This may be something you could look into. Ethan sees a

pediatric neurologist at Penn State Hershey and they have a MDA

clinic there. We went there yesterday and they drew blood for the

genetic test, luckily our insurance covers the test.

I was wondering if you had any problems with Austin's school?

Ethan has trouble with his hands so he uses a lap top at school. He

is so tired when he comes home it takes forever to get homework

finished because he has to take breaks. He actually dictates to me

and I write everything down. He has trouble breathing sometimes

especially if he talks alot (anyone else had this is it CMT?) His

teachers are not very supportive. Most of his work is on handouts

and they have a scanner but he is supposed to know when to use it.

Basically they have left him on his own. His neurologist actually

said he would go to Ethan's school and give an inservice on CMT but

I really don't think they would care to hear it. I could go on but I

don't want to bore everyone with details. Has anyone had to deal

with this?

Thanks to all for the great information and advice

-

[Guest guest]

Hi -

I am appalled to hear how the teachers are at your son's school. I don't

understand how people can be like that. My son is 17 and mostly has trouble

with his foot and he is having some issues with hand strength. I know, without

a doubt, that if it was necessary his teachers would do whatever they could to

help him and to repeat myself I'm stunned of the treatment your child is

receiving. Is going to a different school and option?

I noticed in your post that your son sees a neurologist in Hershey. I'm still

new to this as my son was just diagnosed in December and I was wondering if you

have any info you could pass on to me. We are about 1 hr from Hershey. Been

doing some research on Docs and we have an appointment with a neuromuscular

specialist in town at the end of Feb and another neuromuscular specialist

in Philly may see him in May. I just want to find the most qualified Doc to

help us with this and get us on the right track and would appreciate any info

you may have.

I hope you are able to get some help with your son's situation at school.

Carmella

[Guest guest]

Hi ,

My son Yohan, 13 also had difficulties with teachers in school. We

finally had to switch schools and we were lucky enough to find one where

Yohan fits in and the homework level is acceptable.

Unfortunately, even with CMT information, teachers have a hard time

understanding CMT and its effects. In view of this problem, I created a

program to teach kids and teachers about CMT. The entire video

presentation and article summarizing the presentation can be found at

http://www.charcot-marie-tooth.org/archives/cmt_headlines_story.php?id=3\

8

<http://www.charcot-marie-tooth.org/archives/cmt_headlines_story.php?id=\

38> .

It helped Yohan out a lot and his teachers received a new view of what

CMT actually is and can do. Many parents do not feel comfortable

standing in front of the class, but as a former teacher, I love this

part.

Get back to me if you would like more information. I do travel quite a

bit and maybe I could help you out with this if you choose to do so. Let

me know.

Sincerely,

[Guest guest]

Hi -

We are still new to learning about CMT and your article helped me to understand

some things better.

Thanks!

Carmella

[Guest guest]

Has anyone enrolled children with CMT in a Montessori school? How

is/or how was the experience?

~ Gretchen

[Guest guest]

I have not read all the posts re: the above; however, I would suggest that you

push the school district about having an inservice on CMT for all the staff.

This has to be done for children with juvenile diabetes, etc. ( one of our

granddaughters has JD), so that the staff/nurses, etc. can help the child if and

when necessary. Certainly it should make for a better learning experience for

your child.

Stick with it; you have the law on your side.

P.

[Guest guest]

Hi ,

Thank you for the links. I read your article (when Ethan was

first diagnosed) but I have not watched the video -I am going to

today. When Ethan started using a laptop in school the other

students wanted to know why he got to use one and they didn't.

Ethan explained to them that he had CMT and his hands were weak. He

used the part in your article about how it is like having socks on

your hands. Some of the kids were understanding (his close friends)

and some were not. They didn't think it was a big deal. Ethan is

in 8th grade so the kids are not as understanding I guess. Ethan's

doctor offered to come to school and give an in service about CMT.

I am going to talk to the vice principal tomorrow about all of the

issues he is having and see what she says. Thanks for your support

and help.