welcome and son

[Guest guest]

,

I also have a 14 yr old son with CMT. He was doing pretty good until he was

hit by a car in November. Not wearing his AFOs made his arches go way up. A

little advice from me to you. Get your son some AFOs for his drop foot. It will

also help to stretch his heel cords back to where they should be. What state

are you in?

[Guest guest]

Hi ,

I'm pretty much in the same boat as you only my son is 17 and has the same

symptoms as your son with the exception of the finger issues. I too never heard

of CMT until an orthopedic Dr. we took him because his foot was getting worse

suggested we see a neurologist and have him evaluated for CMT. My son pretty

much had issues with spraining his ankles and balance issues as long as we can

remember - we thought he's just growing into his feet - my son very tall and

always had big growth spurts.

We felt awful when we found out that there was more going on than that. He had

his testing done through Athena and it took just about a month to get results.

In our case, he has a mutation in his MPZ gene - just wait until you try to

learn about all this genetic stuff! - that was never seen before so they cannot

say specifically which type of CMT it is - there are a bunch of different types.

Turns out that my sister's new neurologist had her tested for CMT also and her

tests results were exactly the same as my sons.

Anyway, we are now to go see a neurologist that specializes in patients with

neuromuscular disorders (at least that is the term I think he said).

You have joined a terrific group and you will see that Gretchen is an amazing

source of support, care and help. I joined about 1 week or so ago and she and

this group have made a huge difference for us. We too thought we were the only

people going through this but this group has such nice, helpful, caring people

with a wealth of information and are more than willing to share and to " listen " .

Good luck with you son's results and let him know that he is not alone, nor are

you.

Take Care

Carmella

[Guest guest]

Hi

My name is Sherry. I have have a 23 year old son with CMT.When he was 14 we

noticed his left foot was becoming deformed and was smaller then the right foot.

I took him to the neurologist that I was seeing at the time.

After having a DNA testing done we both found out we had CMT 1B. A

mutation on the MPZ gene.

My son had very mixed emotions at that time and he also felt like

nobody understood.I would just keep trying to talk to him as much as

I could.There was times he would listen.Then there would be times

that he just did not want to here what I had to say. At 14 they have

so many other emotions going on and then you find out you may have a

disease that you have never heard of before into the mix of

things they start going all over the page.My son also has some very

good friends that helped him through it. Hopefully your son's

friend can help him at this time also.

This group is a very good group.Gretchen helped me understand CMT

much better and I'm very thankful to her for that.You will learn a

lot here and welcome to the site it is nice to meet you.

Take care

Sherry

[Guest guest]

Hi ,

My name is and I have a 13 year old son who was just

diagnosed with CMT type 1 through nerve studies. We aren't sure

which sub-type until we get the genetic profile done. As a mother I

have always known there was something wrong with the way Ethan

walked, a pediatrician told me he was a tip toe walker when he was

around 6 years old. He tripped alot, couldn't really run he would

have to bring his knees up really high to his chest.

Anyway I ignored my inner mom voice until last Spring when I saw a commercial

about CMT and the light bulb went off. Ethan's grandfather and greatgrandmother

had CMT (I knew his grandfather had it but didn't know what it was and wasn't

told it was genetic plus it didn't really affect him).

We went to a neurologist at Penn State Hershey, he had the nerve tests and they

showed he had CMT type 1. He is now wearing AFOs that come to just below his

knees. He was upset at first but once he put them on and realized he could walk

" normally " (his words not mine) he was so excited it brought tears to my eyes.

He also started physical therapy 2 days a week.

We go back the the neurologist every 2 months and we are going to

see a pulmonary specialist (he has trouble breathing when he is

lying down and at other times) and an orthopedic surgeon. His

school has been fairly helpful, they let him use a laptop because

his hands are weak and the gym teachers let him decide if he can do

something in class or not.

Well I have gone on long enough, just know that you and your son are not alone.

Maybe the boys could email each other. I know Ethan would like to here from

another " kid " with CMT. Maybe they would not feel so alone.

[Guest guest]

Hi and welcome. I too am a nurse but I do have CMT. Just diagnosed

last August. I have 14 and 12 year old sons neither of whom have been diagnosed

at this point but I know how you must feel about your son. The worst part of my

diagnosis was that there remains the possibility that I have passed this on to

my boys.

I noticed that a few teenagers were talking back and forth and thought your son

may find some comfort in finding others who are

dealing with the same issues. Also, he may have lots of questions that other

people his same age can answer.

You will find lots of information and support here. I will pray for Austin and

your family, specifically for strength and patience during the waiting time and

wisdom for the medical staff.

I’ve been through the whole process so if you ever want to talk you can email me

at pkilloren@...

Best Wishes,

Patty

[Guest guest]

Hi ,

Welcome to the group. There are a lot of wonderful people here.

My 14 year old daughter was diagnosed in February of this year with

CMT. I knew that I had CMT and that my children could have it, so

it wasn't as big of a shock to us as what you're probably going

through.

Tell your son that he's not alone. Cara really hates that she has

CMT. She was upset, angry, confused, scared and a few other things

when she was diagnosed. It's gotten better with time. She still

gets angry when we look at shoes. Her symptoms are still really

mild, just her foot noticably rolling out. So, she has to just be

careful with the shoes that she wears - straight from heel to toe,

wide base, no high heels, etc.

With Cara, I've tried to stay available to talk when she needed to and to help

her understand that this doesn't change who she essentially is. There **may**

be limitations in her future, but she's still a bright, beautiful girl who can

do anything she wants to do (except wear high heels :oD - although, if she

could design a pair that met the shoe criteria, she could do that too! )

I've been to several doctors who didn't know what I was talking

about when I said Charcot Marie Tooth disease or who said they

vaguely remembered hearing about it in med school. Some seemed

genuinely interested in learning more; others looked at me like I

was a guinea pig, new experiment subject, etc. I've been to a very

few who know what I'm talking about.

The MDA Clinic director here in OKC has CMT. There have been a couple of things

that he's said that I'm not sure were totally accurate. But, he hasn't been a

Dr. for very long, so I figure that the real world hasn't superceded what he was

taught in med school yet. I just have to be educated enough to know when to

question what I'm being told.

It's really hard when it's your children with it - you want to

protect them and make life wonderful for them. Sometimes you just

can't do that. Take care of yourself. Please let me know if

there's anything I can do to help.

Tonya

P.S. My oldest daughter is 19 and I believe she has very mild CMT as

well - she's studying to be a nurse.