Re: talking to your teens about CMT

[Guest guest]

I have CMT type 1A. I had my kids tested and my two youngest have CMT type 1A.

My daughter is 4 and my son is 13, my 16 year old is CMT free. She doesn't show

any signs of CMT but my 13 year old does. I found out last night and haven't

been able to stop crying (not in front of them).

I don't know how to tell my 13 year old or how it will affect him. He has low

self esteem. He is a JR. Wrestler and that has helped him with some of his

issues. Can anyone give me ideas on how to deal and talk to a 13 year old about

this?

Virginia

[Guest guest]

Virginia,

What can I say other then most of us have walked in your shoes and know how you

feel. Keep in mind that the diagnosis has not changed anything. Your son had CMT

long before the test results came in and he has dealt with it just fine.

Everything is the same except for you have test results. You can get through

this. Just be honest with him so he can be honest with you when he needs to

talk.

I have had many people tell me that once they were diagnosed they felt relieved

to find out that they actually had something medically wrong and it wasn't just

in their head.

This too shall pass

(mother of 5, 3 with CMT)

[Guest guest]

Virgina,

I was much younger than a teen when the Doc told my Mother and I that I had

CMT. We didn't know much about it then (this was 1962) and I just kept on doing

what was in front of me as if this was a normal event. School, swimming, riding,

bikes, dances, dating, working, college, grad school, career, travel, etc. Life

goes on. Find out all you can about CMT so that you can tell your son the truth.

You might find O.'s information helpful. She's a mom with a son who

has CMT. You can reach her at cmta_sagfgooglegroups

You might consider joining up with Amy de Silva at Facebook. She is about 14 and

very outspoken about CMT.

You might also find this info helpful - altho I am not the Gretchen in the

story.

https://secure.charcot-marie-tooth.org/parents_kids/parents_story.php?id=39

You might find these stories inspirational

http://www.charcot-marie-tooth.org/parents_kids/kids.php

You might consider joining a support group to connect with other parents.

Gretchen

[Guest guest]

Virginia,

I'm sorry this is so hard on you. I found out in my early 40s that this was my

diagnosis. As you can probably relate -- after years of feeling clumsy, slow and

awkward. My sister and I have been on life-long searches to figure out what was

wrong with us because at least then we would know what we were dealing with and

could begin to deal with it. I had mixed emotions about my diagnosis. I was

really bummed to know that it is progressive but relieved to finally have a name

for it, know what to expect and to find a whole bunch of other people out there

who go through the same stuff. The fact that it wasn't MS or something worse was

also a relief.

Of my children and neices and nephews I'm sure that 2 of my kids (16 and 13) are

affected as well as my 17 and 18 year old nephews, each from a different sister.

We are all like my dad who was just like his mom and others in the family.

Believe it or not, my kids kind of think it's cool. We are different, but we are

like each other. For my son who is a carbon copy of me, he doesn't feel so bad

about himself that he is slow and clumsy. That's the way he is and there is a

good explanation for it. Before I was diagnosed, I think he felt a little bad

that he wasn't agile like his classmates. He is content with the title, " Gentle

Giant " (he's 6'1 " at 13 years old).

My 16 y.o. daughter went to an orthopedic surgeon with a shoulder injury with

her dad recently (who does not believe in CMT and didn't say anything to to the

doctor -- we're divorced, obviously). The doctor did several tests and called

them both into his office for a serious talk. He was very sorry to be the bearer

of bad news, but he is fairly certain that she suffers from a condition called

CMT. My daughter laughed out loud and said, " I knew that, my mom has it too " .

Her father was horrified and upset, but he believes in it now. She got a kick

out of it. Unfortunately, the two of them agreed to a nerve conduction study,

which I thought was completely unecessary. My ex said he looked it up on the

internet and it wasn't that painful.... EXCUSE ME?? try enduring it a few times

and then let me know if you think it's painful. My daughter agreed with me,

terrible test, but it added credence to the diagnosis.

Anyway, longwinded way of saying, kids are resilient. This may be a blessing --

an explanation for why they are experiencing life differently than their

friends. It's not because they are lazy or don't try hard enough so they can

lighten up on themselves. As far as talking to them, just be frank and honest.

They are old enough to understand this at 13. Even my 11 year old has a good

understanding of it.

Holli

[Guest guest]

Hi Holli,

Thank you for sharing your story with me. I have talked to him and the first day

he was bummed out and crying but he is feeling better. I told him that I am here

if he ever has any questions or just to talk. I give kids with CMT alot of

credit and I am very proud of him for being so strong. Thank you for

understanding. You know that as mothers we try to protect our children from any

harm and I think that is why I am dissapointed. I feel like I have not done my

part and being I how has given this to them makes it worst. Again thank you.

Virginia

[Guest guest]

Thank you all for your help and information. I really appreciate it.

________________________________

From: gfijig <gfijig@...>

Sent: Fri, July 2, 2010 4:49:39 PM

Subject: Re: talking to your teens about CMT

 

Virgina,

I was much younger than a teen when the Doc told my Mother and I that I had CMT.

We didn't know much about it then (this was 1962) and I just kept on doing what

was in front of me as if this was a normal event. School, swimming, riding,

bikes, dances, dating, working, college, grad school, career, travel, etc. Life

goes on. Find out all you can about CMT so that you can tell your son the truth.

You might find O.'s information helpful. She's a mom with a son who

has CMT. You can reach her at cmta_sagfgooglegroups

You might consider joining up with Amy de Silva at Facebook. She is about 14 and

very outspoken about CMT.

You might also find this info helpful - altho I am not the Gretchen in the

story.

https://secure.charcot-marie-tooth.org/parents_kids/parents_story.php?id=39

You might find these stories inspirational

http://www.charcot-marie-tooth.org/parents_kids/kids.php

You might consider joining a support group to connect with other parents.

Gretchen

[Guest guest]

Virginia,

I'm so sad to hear your son was crying about it. Don't forget that your feelings

about it can really color the way the kids feel about it. I kind of joke about

it -- I think I explained it as: you know how Mom can't seem to stay upright if

I'm standing on a slant? There's a good reason for it. CMT has become our

family's " invisible friend " .

When someone falls over or complains that their hand is numb after cutting back

the ivy we all just say, " oh, it's our family weirdness again " . If anyone else

is around it's almost like an inside joke.

I have had others ask me if it is depressing - not the kids, interestingly. I

say that it hasn't changed a thing. I'm still exactly the way God made me and so

are the kids. We just understand things better. I also point out my dad who, at

70 and with a current good case of drop foot in his left foot, is still single

handedly running a cattle ranch.

If you'd ever like your 13 year old to email with mine, I'd be fine with that.

Holli

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[Guest guest]

BTW, give yourself a little credit: you were a kid with CMT too (so were we all

since it's genetic) so you must have been strong too, without even knowing what

you were battling with. At least our kids know that they are not lazy or

dorky because they are a little clumbsy like we believed.

Also, don't feel guilty about passing it on. Would you rather never have been

born than to have been born with CMT? I don't think your kids would think so

either. Besides, you could have passed on genes for leukemia or heart disease or

breast cancer. CMT is much better than any of those. Every human's genome is

flawed, I'd rather have non-life-threatening flaws, myself.

>

> Hi Holli,

>

> Thank you for sharing your story with me. I have talked to him and the first

day he was bummed out and crying but he is feeling better. I told him that I am

here if he ever has any questions or just to talk. I give kids with CMT alot of

credit and I am very proud of him for being so strong. Thank you for

understanding. You know that as mothers we try to protect our children from any

harm and I think that is why I am dissapointed. I feel like I have not done my

part and being I how has given this to them makes it worst. Again thank you.

>

> Virginia

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Virginia,

Here is a CMT Dad's perspective...

I was the first in my family to actually be diagnosed with CMT, and we can now

trace it back as far as my great-grandfather. All my life I heard of the " family

foot " and our balance issues. We have aunts, cousins, you name it, all effected

but never had a name for it until I was fed up with twisting my ankles, went to

an orthopedic, then a neurologist, and was given the name. That was when I was

about 20 and in college. I am late 40's now and have two sons. Neither came easy

to my wife and I, but both are the greatest blessings of our lives.

My oldest is now 16, and he was diagnosed at around 7. Our youngest is 10 and

last year he was evaluated by Dr. Shy and the wonderful people at the CMT Clinic

in Detroit (as were all of us) and was ruled asymptomatic so we went no further

with his testing.

I have felt all of the emotions - the deep sadness and guilt of passing it on,

but also the great joy of having my sons in my life. My grandfather had it

rather severe, and it was emphasema that made him retire early from being a

weaver. He had a hobbyof buying up land, and ended up building houses (himself)

on several properties as rental income to support him and leave my grandmother

self-sufficient.

I myself am active in a demanding career, my community, Scouts, Church, CMT

Support and Action Group, and was even appointed by our Bishop to our Diocesan

Commission on Ministry with the Handicapped.

My effected son has had physical therapy from the time of his diagnosis until he

entered high school. He had occupational therapy through about 7th grade. He

still has an IEP but uses very few of the accommodations allowed to him. One of

the most things we are told about him by his teachers, especially the gym

teachers, he tries to do EVERYTHING. He may not accomplish it or my not do it as

well or as fast as the others, but he tries. My son speaks very little of this

with those around him. Most of his friends have no idea he has a " disease " just

he is different and can not do all they can.

What I am trying to say is you can be what you want to be with CMT. You have to

be realistic - most athletic occupations are out, but many creative or

productive and giving occupations are completely possible. Set your sights and

you can do it! CMT is not a death sentence, it will be an inconvenience. It can

be painful. It can be exhausting. But there are ways to deal with all of that.

Please feel free to email me anytime. I can also try to get my son to talk to

yours as a bit older peer.

Mark

>

> Virginia,

>

> I'm so sad to hear your son was crying about it. Don't forget that your

feelings about it can really color the way the kids feel about it. I kind of

joke about it -- I think I explained it as: you know how Mom can't seem to stay

upright if I'm standing on a slant? There's a good reason for it. CMT has become

our family's " invisible friend " .

>

> When someone falls over or complains that their hand is numb after cutting

back the ivy we all just say, " oh, it's our family weirdness again " . If anyone

else is around it's almost like an inside joke.

>

> I have had others ask me if it is depressing - not the kids, interestingly. I

say that it hasn't changed a thing. I'm still exactly the way God made me and so

are the kids. We just understand things better. I also point out my dad who, at

70 and with a current good case of drop foot in his left foot, is still single

handedly running a cattle ranch.

>

> If you'd ever like your 13 year old to email with mine, I'd be fine with that.

>

> Holli

>

>

>

> >

> >

> >

> >