Re: Accepting CMT

[Guest guest]

Hi Dennis,

I think it is great that your son is taking vitamin C. That shows definite

maturity and a degree of acceptance. I can't get my 16 year old to take any. He

figures if it won't help him over night he won't bother. My 14 year old son

just started taking it because he is on a muscle building kick. He started

working out every night and asked me for creatine.

As far as stretching and PT well what normal 15 year old wants to do that stuff?

I hated PT when I was a kid, I quit before I was a teenager. Just tell your son

if he starts to feel tight in the back of his legs to stretch them out in the

shower or pool. As long as he is active I do not think PT would matter. I am

sure if he is like my sons he is plenty active with friends and at school. Cheer

up your son is just a normal teen

[Guest guest]

Hi Dennis,

Our 15 year old daughter was diagnosed with CMT 1A also. She has

been in physical therapy for about a year and a half. She is an attractive and

very active and enjoys horseback riding,

swimming etc.

I spoke to her and she was interested in talking with your son via

AIM or MySpace. Sometimes it might be easier to relate to someone of their own

age.

Tammy

[Guest guest]

In a message dated 5/8/2006 12:34:13 P.M. Pacific Daylight Time,

fijiwigged@... writes:

<IF a child of mine had CMT, I would 'educate' him/her/them in 'age appropriate

ways' and would especially teach him/her/them to stand up and fight for

themselves, in the same way my parents did for me.<

I try to do this with my kids but they won't listen. Blah blah blah is all they

think I say. But boy when it comes to them needing a note for PE or an needing

their ADA rights they come right to me

[Guest guest]

Gretchen,

I do agree with you totally. I think it is important to talk to your kids about

CMT in words they understand.

I have a 23 year old that did not showing signs of CMT until

he was 13 or 14. That was tough for him to handle. We did get through it but to

this day we still have our up's and downs.I would talk

to him and some times he would brush me off other time he wanted to know.

So that is when you put it in their ball court.So to speak. I find it has helped

him to want to know more.But what work for one doesn't alway's work for someone

else.

I just believe in being open and up front with my kids is the best.

Again Gretchen and everybody else for all the great information

that gets posted.

Take care,

Sherry

At 03:30 PM 08/05/2006, you wrote:

>Lenka, Donna and others,0

>

>I will add that when, at age 10, I sat in the orthopedist's office and

>heard him say I have CMT. I am very happy I was THERE to hear that at

>that age - perhaps almost 'accepting' since not much was known about

>CMT at that time. He was kind, and besides the lasting 46 year surgery

>I had, he got me into swimming and walking on the beach - two

>activities I have always enjoyed and they have helped me immensely.

>

>While I do not have children, with all the information at our

>fingertips these days, you can bet IF a child of mine had CMT, I

>would 'educate' him/her/them in 'age appropriate ways' and would

>especially teach him/her/them to stand up and fight for themselves, in

>the same way my parents did for me.

>

>~ Gretchen

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[Guest guest]

Gretchen,

I too totally agree with being up front with your children. I was diagnosed with

CMT at age 6. My brother didn't have CMT. I am 35 now. At age 6 their wasn't

very much information out there on CMT. My parents were divorced and both

remarried to other people. My father had CMT but had ignored it and my mother

thought this was a death sentence...My mother was killed tragically when I was

nine, so my brother and I went to live with my father who had 3 more children.

His three children had CMT as well, but kept them in the dark about it until

thier late 20's. My siblings were upset because they has problems in sports and

being clumbsy and pain and didn't know why.

They were upset because they also had children who the possibly could have

passed it on to and it's something they would have thought about before they had

children if they had known. I have 4 children and 3 of them have CMT. All of the

have different symptoms and my oldest son has the hardest time with CMT. He also

had a stroke on top of having CMT so you can imagine the fine motor difficulties

that he has.

I involve them in anything I can. I have been up front with them from day one.

We are involved in fundraising for MDA, and I also send the kids to summer camp

every year to meet the other children with CMT. We have also found a great

program for children with disabilities which allows them to play baseball,

soccer, basketball and other activities that they may not be able to participate

in, in the school. It's wonderful and they totally understand their disease and

also understand that they are just as special as anyone else.

Kathy

[Guest guest]

I totally think that children should be educated and aware of CMT.

I wasn't in any way meaning to imply sheltering them from

information. I just think they should also have an active role in

their treatment/therapy. If anyone had tried to force me to accept

my condition at that age, it would have been a tough road for both

of us.

My parents really listened to me and allowed me the space to

come to terms with my own health. I think modeling active

lifestyles, sharing information and updates, and being open about

coping are important all around. I just know that if I felt fine, I

would have resented people telling me otherwise.

Now that I do not feel fine, I appreciate that I had a little time of creating

my own terms. I hope that clarifies a bit, because it was not my intention to

advocate not letting children know everything and anything about their health,

potential, and opportunities.

I too was relieved to realize my challenges were not my fault. I am a huge

advocate now for young students learning the whole of their challenges while

many try to avoid labeling at all costs. Knowledge is power.

Take care,

Lenka