Re: Son recently diagnosed with CMT

[Guest guest]

Beth,

I am 16 year old girl who was diagnosed with CMT2...about a year ago or

so.

My case is not quite like his. I do have coordination and balance

problems but not some of the other things he has. Like you were saying

there is no test for CMT2 so sometimes it is easy to question what it is.

Some of the stuff I have had done is blood tests, urine samples, nerve

biopsy, and EMG....These do not tell whether or not it's CMT but they

rule out other things. Also, it varies from person to person how much a

person is affected so it's hard to say what'll happen in the future.

ALL WE CAN DO IS TALK TO EACH OTHER AND WAIT FOR NEW RESEARCH ANSWERS!

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[Guest guest]

I am send my thoughts to you and your son - I wish I could have been diagnosed

at his age! I am 43, and have never been a toe walker, but i have VERY TIGHT

heel cords, hard as rocks calf muscles, and some of the other symptoms. I have

never had a clear diagnosis, but I keep trying to pin the doctors down. My mom

has the toes that curl dramitcally, she gives new meaning to the hammer toes

thing! She had the tendons cut and I nursed her through that winter - but the

curl toe hammer toes came back, I think that's part of the issues we have with

this disease, " solutions " are temporary at best. I suggest excercises to

strengthen the muscles that not too tight yet. PT has helped me cope. The other

thing that works are chiropractors and acupuncturists. The chiropractors help

the muscle a lot. Also, get him to have help with gym class - that was so

unbearable for me - I always flunked - this was the time before all the ADA and

other regulations, be sure that the schools have activity that challenge him,

but not too much. I would get him looked at for extra help - some of the young

people on this list can help with that.

Hope this helps somewhat - we are a community who share and I know you will find

help, advise and friendship here.

Martha

pallone@... wrote: My 5 year old son has just been diagnosed with CMT type

2. He is the

first in the family to have any symptoms. He has been a toe walker

since first starting to walk and has undergone several procedures to

correct this (including serial casting, bilateral achilles

lengthening surgery with casting, and botox with casting and AFOs).

Each was successful for a period of time but eventually he returned

to his toe walking habits and is unable to flatten his feet. His

neurologist is diagnosing CMT even though NCV and EMG results were

normal. Other than toe walking his symptoms include lack of balance

and coordination, lack of muscle mass in the calves, tight

hamstrings, calf muscles and achilles tendons. His fine motor skills

seem to be normal.

I was just wondering if anyone knows of a similar case or has any

advice. The doctor says that in this case, there are no tests to

definitely diagnose CMT. I have so many questions but it seems that

there is no way to determine how progressive the CMT will be as he

gets older, if he does in fact have CMT.

Thank you for any responses.

Beth

[Guest guest]

In a message dated 11/5/2001 12:57:24 PM Pacific Standard Time,

tflynn125@... writes:

> BUt anyway, I

> don't know when exactly my mom explained the whole CMT

> thing, but she did tell me from the start that I had

> something that made it harder to run and do gym, and

> keep up with my friends--and explained the

> klutziness...knowing this, even as young as 5 or 6

> helped me to understand and accept the differences

> better.

This is what I am doing with my kids. The kids need to understand why

somethings are hard so they don't just thinks its them.

jenny

[Guest guest]

Martha,

Thank you for your thoughts. With 's diagnosis so recent, I am

trying to learn all I can about CMT. I am trying to get as much info

from his doctors and then I will inform his teachers at school about

his condition. Your suggestion for school sounds wise. I don't have

any symptoms myself but was never athletic and didn't really like gym

much either!! is a very active child and tries so hard to

keep up with his friends and cousins. He gets frustrated that he is

not as fast or coordinated as everyone else. I haven't tried to

explain CMT to him yet. I don't know when would be a good time to do

that. He is very bright and will have many questions!! I want to be

prepared. Any thoughts on this would be appreciated!

Beth

My 5 year old son has just been diagnosed

with CMT type 2. He is the

> first in the family to have any symptoms. He has been a toe walker

> since first starting to walk and has undergone several procedures

to

> correct this (including serial casting, bilateral achilles

> lengthening surgery with casting, and botox with casting and

AFOs).

> Each was successful for a period of time but eventually he returned

> to his toe walking habits and is unable to flatten his feet. His

> neurologist is diagnosing CMT even though NCV and EMG results were

> normal. Other than toe walking his symptoms include lack of

balance

> and coordination, lack of muscle mass in the calves, tight

> hamstrings, calf muscles and achilles tendons. His fine motor

skills

> seem to be normal.

>

> I was just wondering if anyone knows of a similar case or has any

> advice. The doctor says that in this case, there are no tests to

> definitely diagnose CMT. I have so many questions but it seems

that

> there is no way to determine how progressive the CMT will be as he

> gets older, if he does in fact have CMT.

>

> Thank you for any responses.

>

> Beth

>

>

>

[Guest guest]

,

What are some of your symptoms? How was your diagnosis made? Does

anyone else in your family have CMT that you are aware of? Sorry for

so many questions but I have so many!

Thank you...

Beth

> Beth,

>

> I am 16 year old girl who was diagnosed with CMT2...about a year

ago or

> so.

> My case is not quite like his. I do have coordination and balance

> problems but not some of the other things he has. Like you were

saying

> there is no test for CMT2 so sometimes it is easy to question what

it is.

> Some of the stuff I have had done is blood tests, urine samples,

nerve

> biopsy, and EMG....These do not tell whether or not it's CMT but

they

> rule out other things. Also, it varies from person to person how

much a

> person is affected so it's hard to say what'll happen in the

future.

> ALL WE CAN DO IS TALK TO EACH OTHER AND WAIT FOR NEW RESEARCH

ANSWERS!

>

> ________________________________________________________________

> GET INTERNET ACCESS FROM JUNO!

> Juno offers FREE or PREMIUM Internet access for less!

> Join Juno today! For your FREE software, visit:

> http://dl.www.juno.com/get/web/.

[Guest guest]

Beth,

hi! although I don't have type 2(I have type 1a), and

although your son's symptoms and mine might differ

somewhat, I was also diagnosed as young as he

was....for my family it was easy to spot since my dad

has it, and so many people in our family have it... I

am 24 now, and when I was really little my mom said I

used to walk on my toes constantly. Luckily I was able

to walk " normally " , that is, flatten my foot, so she

she used to yell at me to walk flat...BUt anyway, I

don't know when exactly my mom explained the whole CMT

thing, but she did tell me from the start that I had

something that made it harder to run and do gym, and

keep up with my friends--and explained the

klutziness...knowing this, even as young as 5 or 6

helped me to understand and accept the differences

better. When I was that age they didn't even have

" adaptive phys ed " until I was in high school, and gym

was tortuous--up until junior high I could sort of

run, although very awkward and very slow. the only

excuse I could get was that I could get out of the

Presidential Fitness TEsts--the ones they make you run

a lap, and long jump and all kinds of things. I wished

they had had a place for me to go! I was always so

embarrased! BUt once in high school, with the adaptive

P.E. I didn't have to worry about anybody watching me

or picking me last for teams... I am grateful to my

mom for always being straight with me--she answered

all my questions with the " real words " and always

explained things on my level if I didn't understand at

first. For good or worse she told me that if anyone

asked why I couldn't do this or that, if I didn't feel

like explaining the whole thing to them, then, she

said, just tell them you have bad knees or bad ankles.

As for telling other people about CMT, for me anyway,

this has been useful--it's a lot easier to tell a

stranger that I have " trick knees " (that's my main

problem) rather than launch into a long explanation.

As I got older I knew who my friends were and I knew

who would appreciate and understand the details. I

have always felt that the more information I had to

work with, the better my decisions could be....

Anyway, sorry for the length here! I don't

know if this helped at all, but I wish you well! =)

__________________________________________________

[Guest guest]

Beth,

Don't worry about how many questions you ask! That's what we're here for,

to help each other out- to share a common thread....Here's how they found

out I had CMT2...or as they believe, it's not guaranteed.....When I was

13 my ankles just started collapsing and I kept spraining for no apparent

reason...Then at age 14 I still had ankle problems plus my legs were

cramping. At 15, I started having hand and wrist problems. So we ended up

seeing a lot of doctors until one decided to try an EMG...That showed

nerve deterioration....Then thru blood tests, diff. genetic tests, and a

nerve biopsy, it's just narrowed down to CMT 2.... my problems are high

arch, hammer toes, weak ankles, weak or little reflexes, weak hands,

cramping in hands and feet, very painful nerve pain, wrists problems, and

fatigue..........No one else has it that we are aware of...That's the

weird thing...because it is hereditary....Well, I think that answers the

questions....LET ME KNOW IF YOU HAVE ANY MORE, I AM MORE THAN WILLING TO

ANSWER!

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[Guest guest]

Dearest Beth

I know this may sound odd but congratulations on finding a doctor who obviously

knows about CMT and also in getting a diagnosis for your son whilst he is so

young.

From now on your son will get help for his condition and with the knowledge and

support of this group he will get the best help he can.

There are no 'guidelines' to how CMT progresses, for some it's a lot easier than

for others BUT with a doctor who knows and understands his condition he stands a

better chance because with the correct help he can avoid secondary symptoms of

CMT which in my experience is worse than the disease itself.

Don't worry, treat him as a normal child but listen to him and more than all

listen and learn.

You're a wonderful mother because of the research you're doing and the questions

you're asking and I know you're giving your son the best opportunity in life you

can.

God Bless you and your family

Love

Sue X

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller

----- Original Message -----

From: pallone@...

Sent: Saturday, November 03, 2001 2:43 PM

Subject: [] Son recently diagnosed with CMT

My 5 year old son has just been diagnosed with CMT type 2. He is the

first in the family to have any symptoms. He has been a toe walker

since first starting to walk and has undergone several procedures to

correct this (including serial casting, bilateral achilles

lengthening surgery with casting, and botox with casting and AFOs).

Each was successful for a period of time but eventually he returned

to his toe walking habits and is unable to flatten his feet. His

neurologist is diagnosing CMT even though NCV and EMG results were

normal. Other than toe walking his symptoms include lack of balance

and coordination, lack of muscle mass in the calves, tight

hamstrings, calf muscles and achilles tendons. His fine motor skills

seem to be normal.

I was just wondering if anyone knows of a similar case or has any

advice. The doctor says that in this case, there are no tests to

definitely diagnose CMT. I have so many questions but it seems that

there is no way to determine how progressive the CMT will be as he

gets older, if he does in fact have CMT.

Thank you for any responses.

Beth