children with CMT

[Guest guest]

In a message dated 9/5/2004 10:09:49 AM Pacific Daylight Time,

glace@... writes:

> But its different when it's your child.

It's very different when your child gets CMT!

Nice to meet you

[Guest guest]

Dear ,

Thank a million for welcoming me, I really appreciate it.Also, thank you for

taking the time to address my situation.I so glad to hear that your son is not

letting CMT get in the way of accomplishing even the littlest milestones.My

daughter Skylynn had her casts removed today and I think I cried more than she

did.Keep your chin up and again thank you!!!!!!

LISA

[Guest guest]

first off, thank you to everyone who welcomed me. :-)

hi ashley. my son is 10 and we think he has cmt. he wears braces which help him

maintain balance and he also has terrible handwriting. he used a quickpad (like

a little laptop) for some of his work at school. you might want to set up an iep

(individual education plan) with your son's school so they are aware of the

handwriting issues and can help him get a laptop or quickpad.

my son had the emg in march and now we are waiting for the dna test results.

noah also has cp so we aren't sure what is from the cp and what is from the cmt.

i'm just worried that he might not be diagnosed with cmt and then we'll be back

at square one not knowing what is causing his leg problems. his leg muscles are

very weak and he has the classic " upside down wine bottle " shape.

he has hammer toes and his feet have become somewhat malformed. noah has also

been diagnosed with cp and has a syrinx. noah also hates sports because he runs

so slow/poorly. he is also fairly " behind " socially and emotionally because of

his prematurity. also, we don't know of any cmt in the family. if i have it, or

if noah's dad has it, we show no symptoms . . . at least not yet. please e-mail

if i can help.

does any one else here have kids who have cmt and cp? or have children who wear

afos?

thank you for listening. best wishes to you all -

shannon

[Guest guest]

Hi ...

Our little guy (he's six) has worn AFOs for the last 2 years..they

help immensely..friends and family have all noticed how much better he

functions with them...Our orthopedic specialist is also hoping that

wearing them while weight bearing will inhibit some of the CMT-related

foot deformities from developing. He has pictures embedded in the

plastic and his friends think they are cool because they are like soccer

shin guards, only backwards.

Take care

Sally

[Guest guest]

,

Thank you so much for your kind words. Ainsley has also had PT,OT, and Speech

since 18 months. She loves her therapists. We are in Baton Rouge, LA. I have

found some MD clinics in Dallas and Houston. We are not sure what our next step

is going to be. Thanks again, and I will keep your family in my prayers as well.

There is no way we could have gone through the last four years without faith and

knowing God has a special plan for my precious child.

Chemaine:)

[Guest guest]

Amelia,

If you do find any info about young children with CMT, please share and I will

do the same. Ainsley has worn braces in her shoes since she was two. She now has

the kind that just slip into her shoe, they do not support her ankle. Her

therapist was worried about muscle weakness in the ankles. She doesn't mind her

braces at all, it's all she's ever known.

Ainsley really doesn't have any foot deformitites as of yet. We have no idea if

this is going to come in the future. Being diagnosed at such an early age really

worries me. Is she going to experience all the things I read about that adults

do at an earlier age?? I have soooo many questions and concerns with soo little

answers.

I know what you mean about staying up at nights. It is so hard to know your

child has a problem that you can't do anything to cure.

Thanks again for your support.

Chemaine

[Guest guest]

I didn't walk until I was 4 and diagnosed with CMT at 5. I had to stay at a

children's hospital for a week and undergo a series of tests one being the EMG

which was so painful especially for a young kid. I had a horrible time being

diagnosed but I lived a semi normal life. I hid it well and was able to play

sports until late in highschool.

The effects of CMT hit me most when I was 21 after I graduated college. I had

to get AFO braces which was very painful at first since my feet were extremely

sensitive. Once I went through the agony they really worked and I was able to

walk semi normal.

I am just about 32 now and I am still walking without a cane or wheelchair but I

don't know if I will be able to say that in 5 or 10 years.

The moral of the story is treat your child as normal as possible and he/she will

adjust. Keep her as active as possible but understand limitations of CMT. It

is good for you to know what it is but for her well there is little benefit at

this stage in her life.

My daughter is 6 1/2 and I think she has it but so far I can say she is doing

much better then I did at her age so maybe it watered down some

Andy

Re: children with CMT

Amelia,

If you do find any info about young children with CMT, please share and I will

do the same. Ainsley has worn braces in her shoes since she was two. She now has

the kind that just slip into her shoe, they do not support her ankle. Her

therapist was worried about muscle weakness in the ankles. She doesn't mind her

braces at all, it's all she's ever known.

Ainsley really doesn't have any foot deformitites as of yet. We have no idea if

this is going to come in the future. Being diagnosed at such an early age really

worries me. Is she going to experience all the things I read about that adults

do at an earlier age?? I have soooo many questions and concerns with soo little

answers.

I know what you mean about staying up at nights. It is so hard to know your

child has a problem that you can't do anything to cure.

Thanks again for your support.

Chemaine

__________________________________________________

[Guest guest]

I wanted to say thank you for the hellos and support. my question to Gretchen

was how is potassium supposed to help?? Is it better to

take it early or could it help someone like my husband who is 30? I

have heard a bit about Vitamin C...has anyone had luck with it?

My MIL tells me my husband didn't walk until he was 2 but he was not

diagnosed until he was 12 and he was seriously having problems by

then. She had it as well but she grew up in West Virginia and had

bad medical care and they always told her it was related to Polio and she had

surgeries and everything.

So I feel glad we at least can prepare and watch our kids for symptoms.

Honestly I feel bad even talking about it in front of her to the dr. because in

her mind she is a great runner and a great jumper (she's 3) and I hate letting

her hear all my concerns about it.

AMELIA

[Guest guest]

Chemaine,

It's not uncommon to be diagnosed early in life with CMT. I was

unoffically diagnosed (to my parents) when I was three. I'm now 30,

newly married with 2 kittens and still pretty active. Up until

Friday, I was working 2 jobs and going to school part-time. Keep

your chin up.

[Guest guest]

Hi Amelia,

When I was having all those doctors appointments at that age (3-7),

my parents came together or brought another relative with them to

our doctors' appointments. I was in a different room with

the " extra " person while the doctor and my parents talked about

concerns and what not about my diagnosis. I remember some of the

tests and surgeries, but I don't remember hearing my parents ever

voice negative concerns around me. They were always very positive

and encouraging about what I could do.

[Guest guest]

Dear Amelia and Chemaine...

Hi Chemaine and Amelia:

I have a 6 year old son with CMT, diagnosed at 3. My heart goes out to you

both, it is very hard to get used to all the ins/outs and gauge what is best for

our children. Hard enough when they don't have additional

challenges.

That said, try not worry too much about the future...they are still kids just

like all the others, CMT is something they have, not who they are...they will

find themselves in theworld as we all have, but wiser and tougher because they

know how to overcome challenges. A friend with CMT stated that those who were

diagnosed young cope emotionally very well in general, it is their normal after

all. You will hear of so many inspiring adults in the group that have made the

most of life, CMT or not.

I can't imagine what it was like for Gretchen's, 's (Mommy

to Adam) parents years ago without this wonderful resource available.

Knowing there are experienced parents/adults out there is such a

comfort.

Re the AFOs...our team at the neuromuscular clinic also emphasized AFOs to help

slow down/forestall a developing deformity, and keep tendons stretched. Gavin

is so much more mobile now and can go farther with the AFOs it is startling at

times. Yes he is somewhat weaker in the calves, but he falls 1/10th of what he

did before due to correct foot positioning. He has daily PT

strength/stretching through school that is making the most of what he has and

keeping some changes at bay really well.

Take care and good luck

Sally

[Guest guest]

Aww yes I remember .. I had no idea why I was being dragged off to doctors. Its

easier on kids (in my opinion) if there is a family history. My doctor just had

to look at my kids and watch them do a few stretches and walk..

Amelia you can tell your doctor that you have a family history of CMT and want

the doctor to take a look for good measure. You don't need to go into anything

else really.

[Guest guest]

My Mom did this to and it made me completely paranoid. LOL..

I have always been a kid that needed to know. I make sure my kids know what is

going on. Everyone is different, we can only do the best we can do.

[Guest guest]

Hello All,

Happy New Year. I know I haven't posted in a while, but thought to jump in. I

was diagnosed at nine w/ CMT...I'm 33 now. So much was unknown about it. I

underwent a tendon transfer and my leg braces came almost immediately. I have

stayed as active as possible. I don't walk with a cane but I do use a walker

and scooter from time to time. I agree with the writer who stated that we need

to help our children stay as active as possible. I can't have children but I

know my activity level has always played a key role in my life.

Denedria ;-)

[Guest guest]

That sounds like a wonderful idea, . You sound like you have

wonderful parents. I don't plan on having kids, but if I ever do and

they are diagnosed, I think I would do the same. No need to freak a

kid out with questions and concerns.

~

[Guest guest]

I'm glad you told me that because I wasn't sure if I should bring

someone along or not. Now I think I'll have my mom come along and take

her to another room before I go off about all my worries and concerns.

I don't want her to feel burdened with them and I remain positive with

her at home all the time. I don't want her to think I'm just

patronizing her or something. I think she knows we have some concerns,

but whenever she tries to jump she says " Mommy I'm practicing jumping!!

I'm learning! " She seems excited to try to catch up to other kids her

age. And I always tell her that all kids have strengths and weaknesses

and she has alot of strengths, like reading,writing, swimming,

throwing balls ect and she doesn't need to feel bad if she can't jump

or run as well as someone else. Also thanks for the info on Pottassium

Gretchen. I'll have my husband talk to his dr. about it.

AMELIA

[Guest guest]

Let's see: I heard those words the doc said to Mom " Gretchen has

Charcot Marie Tooth syndrome " . I was sitting right next to her. I

was 10 years old and I thought the doc was speaking Latin to us LOL

Denedria's right, there wasn't much known about CMT for those of us

who grew up with CMT, and knowing I had it just made me learn

different things in different ways and adjust to my limits. Although having my

legs shaved before foot surgery by a male orderly was a bit of a wierd

experience.

At one point in high school, I remember my Mom picking me up after

school, driving me downtown to the neurologist, and I thought " why

are we doing this? " I mean we did this about once every 8 weeks I

think, plus lots of docs before that one, so , I knew why I was

being dragged to docs - they thought I could be fixed...which is why

I ended up in the experimental drug trial at UCLA. (Physiotigmine, and no, I did

not complete the trial)

But my family life was incredibly stable and and normal - dinner on

the table at 6 pm, the family sharing about their day - my Dad

asking " what did the doctor say " , and I'd pipe in with what the doc

wanted to try that week. When my Dad suggested that perhaps I should

go to the Mayo Clinic for several weeks and get " more tests " (?) and

that it is " beautiful there in the Fall " I was defiant...LOL Come

on, it was the start of my senior year, I was in love, and life did

not exist much for me outside of California.

My life went on, I never went to Mayo, I had a great senior year and

life has been full of adventures. CMT has just added some " color "

and " spice " to those adventures and I will keep my adventuresome

spirit until the day I die. I will also keep on learning about CMT.

~ Gretchen

[Guest guest]

Hi M,

I think you are doing a wonderful job with your daughter. I felt very strong

when I was swimming everyday. How is your daughter now at this age? Did you say

that you have another child? I look forward to talking with you more.

(mother of 5)

[Guest guest]

,

You are not crazy but the doctors sound like they might be.

I was in testing at 4 to see what the heck was wrong with me. My son was in AFOs

at four.

[Guest guest]

I get so tired of the doctors that I take my daughter to questioning wether her

muscle weakness is due to CMT. I thought that with the DNA results they'd stop

questioning it but they don't. They still keep saying, " Isn't CMT an adult

disease? " She is 4 and she has CMT, I'm not crazy, there are lots of little ones

with CMT.

Next week we are taking a trip to Seattle Children's Hospital, they have seen

other young ones with CMT there and I look forward to not having to explain that

I am not crazy and she is not the first 4 year old with CMT to have symptoms at

a young age.

[Guest guest]

,

I, as well as my family, had CMT at a very young age.

Geri

[Guest guest]

Hi .

Any doctor could easily find info on kids with CMT. Now that you seem to be

somewhat unlucky with no valid responses to your

daughter's CMT, could it be an idea to collect some scientific/medical papers

and put it to them for information?  My grown-up daughter has collected ALL her

info about CMT

-and specifically hers - ...and what problems she has, copies from journals (she

tries to get a copy of the journal, when she goes into hospital, etc).

She presents these for doctors she meets, that don´t know about CMT. -As you may

know, there are many of these. After frequenting hospitals, emergecies wards,

without meeting understanding and capability. She just needed to create as safe

circumstances as possible.

-Actually- very often the doctors are greatfull about this information. Best

withes for your daughter and yourself.

greetings,

Anne in Denmark 

[Guest guest]

Hi -

Once you have found a neurologist that you are really comfortable with, and a

pediatrician, and an orthopedist, and whatever other specialists you need to put

in place, things will get a bit easier...however, almost everytime you introduce

another person into the picture you will have to redefine CMT and it's symptoms

and its effect on your childs life.

I feel your frustration. Receiving a diagnosis helps you and helps your child,

but unfortunately it does not educate the population at large. The last time

had surgery (in June 08) I still had to explain CMT to every nurse and

tech and physical therapist that came to his room. It's ridiculous.

Good Luck in Seattle and please keep us posted!

[Guest guest]

I won't take my kids to a doctor that doesn't understand CMT. I don't see the

point of it.

Funny story, my 19 yr old son went to a general MD that didn't know much about

CMT. The MD took my son into his office and together they looked up CMT.

I thought it was wonderful that this doctor would stop his schedule to

educate himself right then and there with my son to answer any questions.

[Guest guest]

,

They are just mis-informed. I have CMT as well. I have had symptoms for as long

as I can remember. I am 24 now and doing okay, but I think my daughter's CMT is

worse than mine was at her age. I just take it one day at a time and one step at

a time. I am doing my very best to coordinate the best care for my children as I

can. My son (22 months) was diagnosed via DNA testing too, he has some symptoms

but we are waiting to see a Neuro with my daughter before making a decision on

where to go first with him.