Re: When to tell your child about CMT

[Guest guest]

Matt,

If you think she has it, then take her to the doctor now. Early

intervention is important. I showed symptoms at 7, and at 10 was

diagnosed. I am so glad my parents were aware of my symptoms and

intervened. I feel it has everything to do with how I am today - 45

years later. (I never had problems with insurance either)

As for 'understanding' CMT at her age, after her diagnosis the book " Aunt

Scarlett's Farm " by Wheeler might be a good resource to help with

explanation in an age appropriate manner.

http://www.susanwheeleronline.com/index.php

Gretchen

[Guest guest]

I told my daughter as much as I knew about CMT when she was 8, about 10

years ago. It was tough since she was the first person in my family or my

wife's family to have CMT. I tried to convey my confidence that she was

going to be fine and that she was very lucky to be living in a age when

science was unlocking many secrets as to how gene-based diseases can be

identified, treated and cured. I told her that I was sure by the time she

was my age there would be effective therapies or a complete cure to her

CMT1A condtion.

Having said that, I told her as much as I knew about how her life would be

different from other kids, what she needed to do to minimize her symptoms,

how she could stay fit and avoid injury, etc. There were very few books or

pamphlets available then, so I couldn't give her one of the excellent books

that chronicle life with CMT or explain the condition in child terms. I wish

there had been those resources back then.

All in all, I'd say the most important aspect of sharing the information was

conveying my belief that all is going to work out well. I still believe that

and my daughter shares that feeling, at least most of the time.

Good luck. I appreciate your anxiety about doing this but it's one of the

many ways in which you can help your daughter.

------------ Rick Alber

[Guest guest]

Hi ,

My older son knew he was different before he was diagnosed with CMT. He knew he

was last in line, not good at P.E, unable to keep up with his friends and he

knew his feet looked different. He brought it to my attention several times. He

was in the second grade when the doctor made it official.

Kids deal with stuff much better then adults do. CMT shouldn't be a deep dark

secret. It's just life and sometimes genetic things happen. Make the best of

it, your daughter will.

I would just tell her that tripping etc ..can be a symptom of CMT

and that you would like to take her to the doctor to see what he thinks.

That is how I put it with my middle son. He stayed in the room with me when we

got the news and never really reacted to it. To him it was just his life no big

deal. He got AFOs casted that same day because he was falling all over the

place.It was a big scary day for me. He was fine. LOL

It takes a while, but Matt this will get easier!

[Guest guest]

Gretchen, thanks for the input. I am leaning towards telling her, guess I just

need some re-assurance I am doing the right thing. Like parenting is not hard

enough. Try and throw in these kind of decisions. Thanks for the reference

material. Looks interesting.

Thanks again,

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[Guest guest]

Hi Matt

My husband’s parents never told him that he had CMT until he was around

24 and had broken his leg. He never knew at school that there was an

actual reason that he couldn’t run as far, had an odd gait, etc. He was

belittled by sports teachers for not being able to run properly or as

far/ fast as the other kids.

When our eldest son started showing signs of CMT at around 5 years of

age, we were upfront with him from the beginning. He had to be given a

reason for the doctor’s visits, x-rays and blood tests. My mother &

sister in-law couldn’t believe that we were telling him all this stuff,

but my response was that he was in the doctor’s rooms with us, he was a

bright kid who could understand what we were talking about, he knew that

he wasn’t walking properly and was tripping frequently and we didn’t

want to have to lie to him when he asked us what was going on.

I am happy with that decision that we made. By knowing about CMT from a

young age, I think he has learnt to accept it better. He is now nearly

21 and is pretty badly affected with CMT – he can barely walk without

AFOs, his leg & arm muscles are very wasted, he has minimal fine motor

skills and around 8 months ago his eyesight was very badly affected (an

apparently very rare symptom of CMT). His attitude is that CMT sucks,

but that there is no point getting too upset over it, as that’s just the

way his life is. He often says that there are plenty of people worse off

than him. (and there are, but as a parent, it still breaks your heart to

see him have to constantly struggle).

I think too, about you saying you don’t want her to think she is

different from other kids… all kids are different, all kids have

problems, whether they are physical, emotional or behavioural. I have

always said to my kids (and myself!) when you see someone with a

“perfect” life – you don’t know what goes on in their life, because

no-one has a perfect life. And sometimes just knowing that there is a

reason for why you are different, in this case CMT, may make all the

“difference” in how you deal with it.

Anyway, sorry for such a long post. I think you should tell her, but

whatever you decide I hope for the best.

Regards

Suzanne

Wollongong, Australia

[Guest guest]

Thanks Rick for the input. I am getting the same feeling from all. You are

right there are many resources available today that will make it easier to

explain to her. I guess having it myself will make it easier as well.

Matt

[Guest guest]

Hi ,

I knew you would respond. My daughter has just started to fell anxiety about

keeping up with her friends. Running, PE, etc... she pulled a kids hood the

other day playing tag because she could not catch her. They got into a fight

about it. I guess kids will still be kids. Tonight it was kinda funny, she

said " Dad look how high I can jump " Of course it really was not that high ( I

hate jumping), but I encouraged her none the less and told her she was doing a

great job.

You are right, kids deal with things very well. Much better then adults do

sometimes, they always amaze me. The hardest thing I find is dealing with the

pain. She has a hard time going to sleep some nights cause of the pain/cramps.

My foot hurts, calf, upper leg, it so hard to watch her cry because of the pain.

I try not to blame myself as I end up in tears too but sometimes it is just hard

knowing that her pain is because of something I gave her. All part of the deal

I guess, I just need to learn to deal with it. Well I will go dry my eyes

again, and talk to my wife (thank god she is very supportive). You guys are all

right and I need to get this over with and take her to the Dr.

Thanks again for your input, it helps knowing I am not alone in dealing with

this.

Take care,

[Guest guest]

Hi Matt,

 

You are dealing with the exact same issue as me.  My daughter is 8 1/2 and also

has the classic signs yet many don't notice it like I do.  She runs funny and

gets tired easily.  She always has known me as Daddy with a broken leg but Daddy

first.  I always said I would not tell her until I absolutely had too because it

can really hinder her spirits.  Its hard enough to tell an 8 year old they are

different but too tell them there is little they can do to really get rid of it

like a cold. 

 

On the other hand you don't want her to feel different and think its something

they are doing wrong or think they are lazy.  It is really a double edged sword

and needs to be handled delicately.  My daughter recently said " Daddy why are

both or your legs broken "   She continued to say " Daddy there is more then a

broken leg right? "   I felt at that moment was the right time so I told her and

explained she may have it and if she wanted to get tested I would help her.  To

my surprise she did not cry and said she wanted to get tested even if they have

to draw blood so she can " get rid of it "   I explained its not so simple but

there are things she can do now as a child that can help her.

 

Later that night I pondered over my decision to tell her.  Since then she has

been suffering very bad anxiety and has had to be tested for her heart cause she

was having unexplained chest pains.  Next it was her lungs and she thought she

had asthma so we got her checked for that.  Next it was her stomach.... It has

been so bad the school is recommending therapy.  I think her somatic symptoms

were a direct correlation to me telling her.  I think I should have waited until

she was able to better handle it.  I was diagnosed at 5 and I remember how

different I felt.  As much as you can hear to not treat them different its hard

not too.  I have not had her tested and decided to put it on the back burner a

while.  I think either decision is the right one, you know your child best and

go with your heart.  Please let us know how you made out.

 

Andy

[Guest guest]

Hello ,

I have a five year old daughter who was diagnosed with CMT when she was

four years old by a pediatric neurologist. He conducted an

Electromyogram (EMG)test on her in which she had no reaction to the

neurologist cranking the machine as high as it could go. I have not

been able to explain to my daughter why she has to wear night splints

and why she has to wear AFOs. In addition, I have not been able to

bring myself explain to her this disease.

Chavonne

[Guest guest]

Another angle.

My Mother has CMT and was told of it when she was very young

and I found out about my CMT when I was 16 and broke my ankle.I wish that I

learned of my my CMT when I was younger because if I only knew why I was a slow

runner and allways falling,my mom has no problem accepting as I am having a

difficult time.My Mom was told as a little girl that she would have a hard time

walking and at 58 she walks everywhere (with AFOs),and feels lucky she still has

the ability to walk, me on the other hand never had a problem with walking and

now CMT has caused me to loose my physically demanding career.I wish I knew when

I was young!!!

Geoff in PHX

[Guest guest]

I agree that if she knows she has it she can justify why she is not keeping up

with the other kids or why she trips.

 

When I was a child we did not know about CMT.  I often tripped and fell and was

just plain clumbsy and was told I don't pay attentiion to what I was doing.  I

also spilled drinks at dinner causing parental unhappiness or dropped things

alot because my hands are affected.  I often wondered what is wrong with

me...why can't I run fast enough, why am I clumbsy, I felt like I was just a big

dork!  I didn't find out about CMT until I was in my 20's and it explained my

whole childhood although the feelings of inadequacy never went away. 

 

How lucky a child would be to have a parents support through this and understand

what they are going through.

 

Cyndi

[Guest guest]

Hello all,

Just my 2 cents as 3rd generation with CMT, parent of a young child with CMT,

and as a child psychologist.

I vote for telling children when they are very young so that they can adopt it

into part of their picture of who they are. " Mommy has trouble walking

sometimes, and someday, you might too. " If a child hears something from the

time they are small, it becomes part of their identity, not something that is

different or problematic or even a big deal, it's just who I am. I also advocate

for complete openness about CMT with our children, creating an environment that

doesn't make the disease a taboo or hush-hush subject, and allows children to

ask questions and learn the correct answers.

My mother and grandmother have CMT, and both were always very open with me about

it. They took me for an evaluation around the age of 7, and were wonderful at

educating me about the symptoms and prognosis. Because of this knowledge, I

knew and understood why I wasn't good at sports, why I couldn't run very fast,

and why I wasn't as physically coordinated as others. It was still a struggle

at times with other kids and teachers, but at least I knew the reason why.

As an adult, the three of us talk fairly openly about our symptoms and

progression and it is nice to have someone to talk to about it. It has been

harder for me as an adult to share with non-family members, but I am working on

that too. I will absolutely tell my son about his CMT, and help him develop a

response to give to kids and teachers who ever comment about it. Having a

verbal response prepared is very powerful for children, and helps mitigate most

bullying or teasing situations.

[Guest guest]

I agree 100%..

[Guest guest]

Chavonne,

My middle son and daughter have known they had CMT since they were four. It has

just always been part of their life and nothing shocking. It doesn't have to be

awful scary news. Its just a matter of fact and life goes on.

[Guest guest]

I was diagnosed at five and just accepted it. My Mom has always just

accepted it also, maybe that is why it has been so easy for me to deal with my

own CMT.

My kids however having CMT is so hard to deal with. I stayed in denial for as

long as I could. I would like to go back to those happy days. Anyway maybe we as

parents set the tone for how our kids accept CMT?

[Guest guest]

Matt,

I am not sure if it makes it easier. One thing is you become a very

knowledgeable advocate for your child.

[Guest guest]

So true! Many times over the years I have had to remind my children not to

compare themselves with other kids. I am so happy that I have been open and

honest with my kids. They are not afraid to talk about CMT and they are not

afraid of their CMT.

[Guest guest]

YES it's hard enough! Then add a medical problem to the mix and wow we have hard

jobs! I do not know anyone outside of this list that can handle what we handle

daily.

[Guest guest]

Hi Again ,

Adam plays tag on a scooter. I have always kept the razor scooters in stock for

the boys. A few summers ago he invented a game of street scooter football. All

the kids were on scooters and wow was Adam excited to have someone actually

throw him the ball. LOL......

I can finally say after years that I don't cry anymore. Matt. it took me a long

time. I feel so guilty, but now I can also feel proud . Proud that my children

are strong on the inside. I am excited for my children to get a CMT treatment

one day because then they will know both sides of compassion.

[Guest guest]

In a message dated 10/3/2008 5:25:50 P.M. Pacific Daylight Time,

phantomsec4@... writes:

<The doctor explained to that he had CMT and with sincere

compassion told he was sorry there was no cure at this time. >

My doctor said " Yep they have CMT. They will do fine "

[Guest guest]

Matt,

You should rub her legs at night, when reading stories or watching TV. We did

that with Adam, once he relaxed enough he went to sleep.

[Guest guest]

Hi Matt,

I think it would be a good idea to tell your child. This way

it will help her to understand why she is so different from the other

childern. I was told when I was eight and then my parents informed the

teachers so then they were more understanding and did not give me a

rough time at not taking PE etc. The other childern were still rough on

me but thats the way it is. It made me alot stronger. Good luck in your

in what ever you decide to do.

Debra from Canada

[Guest guest]

hi -

I know you've had some wonderful advice from our group - I want to

add just one more thought if I might....

My son was diagnosed at age 9 and our neurologist had and integral

part of telling him about his CMT. The doc had called my husband and

I and conferenced with us about the genetic test results and what it

all meant. He then suggested (because this was all new to us - our

sons are adopted so we had no knowledge) that we research CMT on line

and call him with any questions we had. Once we had come to terms

with what CMT was and what we may expect in the future and I stopped

crying ....all of us went to see him.

The doctor explained to that he had CMT and with sincere

compassion told he was sorry there was no cure at this time.

He also told what he could do to stay healthy and that he

would be there to support him in anyway that he could. He gave

time to digest what had been discussed and to think of any

questions he might have. We went back to see him in a month and

was able to bring questions to the doc. While getting the

news was difficult, the doctors wisdom and support helped us out

tremendously.

[Guest guest]

Excellent advice ! It worked really well for us in dealing

with adoption. We read stories and celebrated homecoming day from

the time the kids were babies. They knew right from the start that

our family was formed differently from other families and instilled a

wisdom in them that I wish most adults had.

Children are not given enough credit sometimes for the way they can

accept and assimilate information. Granted, there is no comparison

to the severity of being diagnosed with a disease to being adopted

into a loving family...but the inclusion of information into everyday

life is paramount to healthy awareness and developing coping skills.

[Guest guest]

I was also diagnosed at 5 and it was more intensive and had to be hospitalized a

week to find out what was wrong with me.  There was no history of CMT on either

side of my family. 

I remember the blood work, tests and the EMG which was so traumatic to me as a

child I still remember that day as clear as day.  I think my family was in

denial about it and made me everything which I actually think is good. 

We want to save or protect children especially our own but it is true we often

times have to work twice as hard with everything.  I think it comes down to

staying as active as possible as much as a " normal " child would. 

I was told I would be in a wheelchair by the time I was in college and I am 33

and still walking. 

I am still on the fence about it not that I don't think a child shouldn't know

its more when to tell them.  I think telling my 8 1/2 year old daughter about it

may have been too soon but I am sure its never a perfect time. 

My daughter actually didnt realize she ran different and didn't realize her

falling and being clumsy was abnormal.  Kids her age have not noticed much

either and she never had problems meeting lots of friends.  Now she thinks

everything is from CMT, a sore throat, cough, etc.  I of course educate her on

the disease but I think it has cause much anxiety. 

I think when a kid realizes he/she is different and is having a hard time doing

activities of daily living is the right time whatever age that may be.  I do

agree kids are stronger then most give them credit for and I do agree they will

learn to deal with it but it is most important that a kids spirits stay high and

that they are happy.  

This is a hard topic but I don't think there is a right or wrong answer.  I

think whichever choice you make you act as their biggest advocates and support

them.

Andy