Re: When to tell your child about CMT

[Guest guest]

Although I still sometimes feel anxiety about how to discuss CMT with

my daughter who is 5, I feel we did the right thing by telling her

when she was diagnosed at age 3.

She understands she wears night

braces to help keep her heal cords stretched out, and she wears shoe

inserts to help keep her feet straight. She isn't in school yet and

I believe that has been for the best because it seems the preschool

set is very strong into comparing...like " I RUN FASTER THAN

YOU!! " " I JUMP HIGHER THAN YOU!! "

She is currently in ballet and it seems all the kids who are 5 are starting to

chill a little on the loud comparisons. She has a good self esteem and doesn't

seem stressed or anxious about CMT it's just something she inherited from her

dad.

She always says " I got silly feet from my dad just like you got bad eyes from

your dad. " I wear glasses. Anyways my 2 cents.

Amelia

[Guest guest]

I've known since the time I was diagnosed around the age of 5 (it was

the late 1960's, so it was a diagnosis by symptoms and history;

genetic testing was unavailable. I didn't really comprehend it,

except that I was forced to wear braces that didn't did nothing for

me).

My 16 year old son was evaluated by the Pediatric Neurologist last

year, and the doc asked me if I thought he had it, and I told him

that I've known since he was 3 or 4 he had it, because I could see

the subtle symptoms that I experienced as a child. This was confirmed

by a genetic test (which also served to identify which type was in

our family).

The main reason we had our son evaluated was because he was having

some school problems related to CMT. He still doesn't need AFOs at

this point; the Neurologist told him that when he starts tripping

more, to call him to re-evaluate.

I don't think you necessarily have to have her evaluated by a

Neurologist at this point. My son's Pediatrician would have gladly

referred him at any point, but his view was that since I recognized

the symptoms (and he did as well), and there was no treatment at that

point, we could hold off.

As for talking to your daughter about it, I wouldn't keep anything

from her, but at her age, she wouldn't understand a detailed

explanation. If something comes up such as her mentioning that she

trips a lot, can't run well, etc., explain to her that she may have

the same thing you have, and that for you and her that is normal. My

approach to my diseases is to not compare myself to what is " normal " ,

but to consider myself normal, and accept what I have, so as not to

think of myself as disabled. I hope that made sense.

I've been a RN for almost 20 years (mainly in Peds), so I see a LOT

of children with various diseases, some that are far worse than CMT

(although I'm not at all minimizing CMT); the reactions of the

parents and the child vary widely. I've also seen a lot of adults

through my job, some who had things far worse than my kidney failure

(I did dialysis for 9 months while still working full time, and

then got a transplant this past May; back to work in less than 2

months); it's all relative. I try to set an example for my son so

that he doesn't let himself be hampered by the CMT.

Good luck with your decision.

Jeff

http://chronicpositivity.com/

[Guest guest]

Hi All,

When I was a child, my parents were well aware of a problem as I had

many falls. In fact, I remember being in elementary school and the

principal said I had " clumsy sickness " . At that time CMT was unheard

of. We did not know exactly what it was until my mother was 58 and I

was 30. By that time I had 4 children. We are talking about a time

in the 1970's.

I can say I had problems growing up, not being able to run like other kids and

always having bruised knees, but considered it part of growing up. At 14 I had

a triple arthrodesis done on my right foot as my foot was deformed and shoes

were a huge problem. The doc that did the surgery diagnosed it as " clubfoot " .

That was in 1956.

As previously noted, my mother was 58 and seen at Geisinger in

Danville, PA by a neurologist who diagnosed her having CMT. When he

shook my hand he noted the muscle wasting in my hands and told me I

had it also. My mother cried all the way home feeling so bad to have

passed this disease on to her children, four of us, out of six. She

had no knowledge of her parents having any problems, but then, they

both died in their 50's.

At that time, in the 20's, women wore high top laced shoes which will stabilize

weak ankles and the deformities were hidden.

I feel it is very important for a child to be aware of having CMT as

early as they are able to understand. They will be able to understand

why they cannot do what other kids do. I was unable to understand

because my parents didn't know either, they just felt it was a birth

defect and we accepted whatever God gave us. That still is a fact,

we accept what we cannot change, but understanding it helps to accept

it.

At the age of 66, I am finding things very difficult but when I

look at some others with afflictions much worse, I thank God for my

many blessings. That is an important fact to teach our children, to

look at others with worse problems, accept the things we cannot

change and to thank God for the blessings we do have.

Pat

[Guest guest]

Hi, all. I wanted to post on this subject as my husband and I have

just had both of our sons, ages 13 and 10, tested over the summer. I

have been 99.9% sure our younger son, Sully, has CMT1A like me since

his deep tendon reflexes disappeared when he was 2.

He was born with shortened heel cords, but has actually done better than I did

when a preschooler and up until now. He began to complain of hand fatigue,

terrible arch pain, and I noticed tremors in his arms.

Our older son, , has extremely flat feet, and has had pretty low muscle

tone since birth, but I never got to the place where I knew it was time to have

the test with him. My mother was diagnosed at age 51 only because I was

diagnosed when I was about 21. She had many other problems just as she was

going into her teenage years with spinal cyst, spinal fusion, and was a

quadriplegic by the time she was 38.

I either wanted my kids to know when they were pretty young, or after

they get past those horrid adolescent years, when they internalize so

much.

I have made a point to tell both of my boys that they have a 50%

chance of having CMT like me. Part of me wishes I had known when I

was younger, because I think I would have made better choices for my

health, and my career-- a better reason to leave cigarettes alone.

But, I always felt normal with weird feet. Maybe I would have driven

myself less if I had known. I decided to have them tested in the end

because I feel that I needed some school accommodations (that I did

not have) due to fatigue.

So that by the time I got to high school, I was in total burn out, hence I just

lost my momentum, and gave up for a few years. I literally went from straight

A's through 8th grade, to passing 9th grade English by .5 point. High School

ramped up the amount of writing, walking, everything, for me. And I would hate

to see that happen to my son.

So, my younger son tested positive, and my older son tested negative

(which was a really wonderful suprise about my older son!) I am so

glad to know my older son doesnt have it, because I think I have been

a bit overprotective of him.

The school put a 504 Plan in place for my younger son that provides for a scribe

as needed, ability to use the elevator if he needs to, and reduced busy work.

In one way it feels pretty good to have done the testing, now that it is over

with--- I spent a good bit of emotional energy not knowing, wondering if. . .

and then knowing and wondering WHEN to make it official.

Mandy

[Guest guest]

Hi Mathew...

We told our son Gavin when he was 4 years old, he is now 8...we did not

explain that it is degenerative, we've just explained that once you have

it you always have it and that symptoms can change....I have a number of

eye-related issues stemming from having been a very preemie baby and he

seems happy to understand that I have something that periodically

changes just as his does...He was much less prone to big upsets when he

fell once he knew he had CMT...I think it reduced his frustration and

anxiety to know that there was a reason. Thank heaven he doesn't

remember the torture session of the NCV test when he was 3...I will

never forget it, even the med student present was crying.

He understands that he has CMT, that it affects the nerves that in turn

affect the muscles, that it is caused by having an additional copy of a

gene (and nothing that he did to cause it) and can explain what symptoms

it causes and knows that he has to wear his AFOs and do exercises etc as

a result. He has recently been doing a bit better and so was wondering

if he was miraculously 'growing out' of it...if only...but he seems to

have plateaued for a bit.

I think kids of this age really get it, much better than adults.....We

do an orientation with his class each year, based on an example of an

interactive demo posted on the CMTA website....I made a fake nerve out

of an 8 foot long stuffed snake covered in panty hose (the myelin) and

then 'CMT'd' it by having elastics to mess the myelin sheath...at the

end of this year's demo one of Gavin's friends came up and started

taking the elastics off...I asked why and he said it would make the

nerve better and he hoped it would make Gavin better too....Don't

underestimate kids capacity to understand and be empathetic.

Take care

Sally

[Guest guest]

All, I want to thanks you for your input. I have been struggling with this for

the last couple of weeks. We have 99% decided to tell her, we have the video

and wanted to get the book that Gretchen talked about. " Aunt Scarlett's Farm "

but can't find it anywhere. I even went to her sub site and sent the author a

contact email but have not heard back.

I did see it in the Bowmanville library here in Ontario but I do not live in

that city so its a challenge at best. If anyone has any insight on where to

find this book in Canada I would appriciate it.

Thanks

Ontario, Canada