Re: kids - testing

April 25, 2000

In a message dated 4/25/00 12:21:54 PM, gingerale1996@... writes:

<< I don't know when or if I should have my daughter tested. >>

The usual recommenation is NOT to have a child tested unless it has definite

symptoms and needs to have the diagnosis in order to receive AFOs or

something.

I assume the other moms or dads in the group have ideas and suggestions.

You said you were to be tested in May. What sort of testing? Reflex? DNA? The

DNA test is limited since it only finds a few types and is not always

accurate. It does tell some people what type they have. If you definitely

have CMTiA, CMT1B or CMT 1X, then she could have a blood test to determine if

she inherited it. If you have one of the other 20 or so types the DNA test

will not identify it.

The support you can give your children, helping them develop interests and

being curious and creative is how you can help them most. In my opinion.

Kat/Pixi

April 26, 2000

In a message dated 4/26/00 6:30:57 PM, gingerale1996@... writes:

<< I don't want to put my daughter through tests if it isn't necessary. >>

If you and/or your mother is diagnosed first it will help the docs know what

is going on with your daughter, in my opinion. I would have her checked

afterwards. Either she does or she doesn't have CMT, so there is no rush.

There is just one type per family. Perhaps you have one of the types that can

be diagnosed with a DNA test. It must be hard for you to cope with this, but

you will get through it. She's probably just going along being a sweet little

girl, not realizing she can't always do quite what others do. You can help

her find all her strengths, and not dwell on any weaknesses.

She may need AFOs to help her be mobile. It's not unusual for small children

to wear them, and young children are far more adaptable than many adults are.

That's just my 2 cents worth, it's your decision.

Hugs, Kat

April 27, 2000

In a message dated 4/26/2000 6:30:52 PM Pacific Daylight Time,

gingerale1996@... writes:

<< I'm not sure what testing the doctor is going to do. I'm assuming she'll

do

reflex tests. I don't want to put my daughter through tests if it isn't

necessary. But she has been showing some signs that worry me. She didn't

walk until she was eighteen months old, she loses her balance and falls

alot. One time she fell and she kept getting up and falling again. That

really scared me. Recently, I've caught her walking on her toes. Hopefully,

if she need to have a diagnosis all that will be needed is a blood test.

All of this is breaking my heart. >>

I hear ya! I have a broken heart too... Somedays it's hard to find the good.

One goodthing is we are not alone, we have many many other people that

understand where we have been and where we are going.

April 27, 2000

I'm not sure what testing the doctor is going to do. I'm assuming she'll do

reflex tests. I don't want to put my daughter through tests if it isn't

necessary. But she has been showing some signs that worry me. She didn't

walk until she was eighteen months old, she loses her balance and falls

alot. One time she fell and she kept getting up and falling again. That

really scared me. Recently, I've caught her walking on her toes. Hopefully,

if she need to have a diagnosis all that will be needed is a blood test.

All of this is breaking my heart.

In a message dated 4/25/00 12:21:54 PM, gingerale1996@... writes:

<< I don't know when or if I should have my daughter tested. >>

The usual recommenation is NOT to have a child tested unless it has definite

symptoms and needs to have the diagnosis in order to receive AFOs or

something.

I assume the other moms or dads in the group have ideas and suggestions.

You said you were to be tested in May. What sort of testing? Reflex? DNA?

The

DNA test is limited since it only finds a few types and is not always

accurate. It does tell some people what type they have. If you definitely

have CMTiA, CMT1B or CMT 1X, then she could have a blood test to determine

if

she inherited it. If you have one of the other 20 or so types the DNA test

will not identify it.

The support you can give your children, helping them develop interests and

being curious and creative is how you can help them most. In my opinion.

Kat/Pixi

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April 27, 2000

This is a long message about having kids - and about testing them.

Altho I know these decisions are personal ones, I'm sad to hear of

people not having kids because of their worries about them inheriting

CMT. I have a URL where a specialist at a conference says that

CMTers should go ahead and have children if they want them, he says

some of the best people he has known have CMT :} I'll post the URL

as a separate reply

I'm also rather worried about suggestion that young children should

be tested....

> In a message dated 4/25/00 12:21:54 PM, gingerale1996@e... writes:

>

> << I don't know when or if I should have my daughter tested. >>

April, I can understand why you have been worrying about whether your

young children have got CMT or not, but can I cheer you up with a few

thoughts....

Two of my three sons (now all in their 20's) have CMT. They were not

diagnosed at very young ages and are none the worse for it.

In one case, there were symptoms as the child started to walk (at

ordinary age). Walked on tip-toe nearly all the time (like one of

yours?). In those days, we didnt know that my feet problems were a

genetic disorder and just tried to discourage the tip toes.

He has always been the happiest of children with a fantastic sense of

humour and never knew he had a genetic disorder till he was

eventually diagnosed when about 8 or 9 yrs old (which also led to my

diagnosis and one of my other sons - who had so far showed no signs

at all, and in fact was the most graceful mover/dancer you can

imagine).

So then the tip-toed one had a tendon operation (week in hospital)

and about three or 4 yrs later, had another operation to fuse one

ankle. Since that time, his gait has been near normal without any

supports. Has always been a very happy and popular child - no way

has he been badly affected by the CMT to date - his life at 24 years,

just graduated, is one of happiness, despite the childhood operations.

Oddly enough, the other affected child - who had showed no signs -

has not fared quite so well physically. In his early teens he showed

first signs of drop feet and skinny lower legs. Has size 14 feet so

drop feet have been quite a hardship. In mid-to-late teens, got

plastic rigid foot support (worn outside long socks). Hands weakened

a bit too, so needed to grip pen in unusual way and tighter - so was

allowed to use PC in final high school exams (statewide exams taken

by all at age 18)

This one has great lumps on his ankle where over the years the

plastic supports have rubbed and caused tissue to build up. He has

suffered more from his feelings and embarassment about his gait - but

he has said to me more than once that he views his CMT as a blessing -

it has taught him alot about life. He also has many friends and

many talents. No way he would wish he had not been born. And there

would have been no difference if he had been diagnosed as a toddler.

I never knew about CMT till I was 40, and have had no muscles below

my knees ever since I was a toddler. Yet have led a full and lucky

life. The doctors told me I had damaged muscle nerves at birth and

should do ankle exercises - thats all I knew. The worst of it was

being laughed at by some other kids sometimes, or being stared at.

But again, no way would I prefer not to have been born.

From what I've seen in own family - and heard from the net - no-one

can predict whether your kids will have lighter or heavier problems

than you do. It varies so much. So whats new. My wifes mother has

spent much of her life as a depressed person (now quite happy). She

had 5 kids, and most of them have been happy most of the time... So

you can never tell. Don't label, don't predict, don't specify the

negative potential... hope always for the best and think positive!

Who knows, it might never happen.

Hope this cheers someone up!

April 27, 2000

Kat,

Thanks. I probably will have her checked afterwards. My mom was diagnosed

with CMT when she was real young, but she doesn't know what type. She's

going with me to the doctor in May. I know this is real hard on her, too.

But, I'm glad she's there for me.

Hugs back,

April

If you and/or your mother is diagnosed first it will help the docs know what

is going on with your daughter, in my opinion. I would have her checked

afterwards. Either she does or she doesn't have CMT, so there is no rush.

There is just one type per family. Perhaps you have one of the types that

can

be diagnosed with a DNA test. It must be hard for you to cope with this, but

you will get through it. She's probably just going along being a sweet

little

girl, not realizing she can't always do quite what others do. You can help

her find all her strengths, and not dwell on any weaknesses.

She may need AFOs to help her be mobile. It's not unusual for small children

to wear them, and young children are far more adaptable than many adults

are.

That's just my 2 cents worth, it's your decision.

Hugs, Kat

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April 28, 2000

> I'm not sure what testing the doctor is going to do. I'm assuming

she'll do

> reflex tests. I don't want to put my daughter through tests if it

isn't

> necessary. But she has been showing some signs that worry me. She

didn't

> walk until she was eighteen months old, she loses her balance and

falls

> alot. One time she fell and she kept getting up and falling again.

That

> really scared me. Recently, I've caught her walking on her toes.

Hopefully,

> if she need to have a diagnosis all that will be needed is a blood

test.

> All of this is breaking my heart.

>

I can relate to that feeling, but remember these children are the

first ones who will benefit from the amazing work being done in

genetic treatments and cures. There's every reason to believe that

scientists will unlock the secrets of CMT by the time our children

are in their 40's and 50's, when CMT can be most severe.

------- Rick Alber

April 28, 2000

April, This sounds like what happened to me.... When I was 5 and in

Kindergarten it was my teacher that noticed I fell all the time and I did

walk on my tip-toes all the time. (I'm sure my parents noticed it also, but

didn't want to face it. When my mom told my dad that I did have CMT he got on

his motorcycle and was gone a very long time).

I remember times that I would just be standing as a very young child and I

would find myself on the floor. My legs would just give out on me.

Jeanie (from Oregon)

Moonglow21@...

Jeanie421@...

come and visit <A

HREF= " Charcot-Marie-Toothonlinechat " >CMT chat

room</A>

Charcot-Marie-Toothonlinechat

*************************

In a message dated 4/26/00 6:31:02 PM Pacific Daylight Time,

gingerale1996@... writes:

<< I'm not sure what testing the doctor is going to do. I'm assuming she'll

do

reflex tests. I don't want to put my daughter through tests if it isn't

necessary. But she has been showing some signs that worry me. She didn't

walk until she was eighteen months old, she loses her balance and falls

alot. One time she fell and she kept getting up and falling again. That

really scared me. Recently, I've caught her walking on her toes. Hopefully,

if she need to have a diagnosis all that will be needed is a blood test.

All of this is breaking my heart.

>>

May 1, 2000

I know exactly what you are going through...our son didn''t walk until he was

18 months old...and he falls all the time, he doesn't walk on his tiptoes

though, but his little legs and ankles just give out all the time. We just

received his diagnosis at the end of January this year via a DNA blood test,

this confirmed he has CMT1X...this was hard for us to cope with because when

I was tested many many years ago, I was told I didn't have this disease that

my father and so many other people in our family had....but, I do...although

I don't show any real signs of the disease. It breaks my heart every day to

know that our son has to fight every day for all the things that have come so

easy for me and for our other children...he is in PT,OT,ST and DT...four days

a week he goes to an early childhood class...he is just turning 4 this month.

We have chosen to not have our other two sons tested at this point...they

are not showing any signs of the disease and we feel that at some point in

their lives they should be tested, maybe before they get married or decide to

have children...that should be their choice unless they start to show signs

of this disease earlier and we need to get them into programs which require a

confirmed diagnosis...it is a hard decision, but it is a personal one that

can only be made by each family...you have to do what is best for your own

situation...best of luck to all you who have children who are going through

this....it is hard and it is heartbreaking, but, it is definitely not the end

of the world...I have gained so much from all these forums....I have learned

that each of us, no matter what ailments we may have can still lead a fully

enriched life full of love and happiness

Best wishes to all......Tana

May 1, 2000

In a message dated 5/1/00 10:21:31 AM Pacific Daylight Time, murkam@...

writes:

<< .best of luck to all you who have children who are going through

this....it is hard and it is heartbreaking, but, it is definitely not the

end

of the world...I have gained so much from all these forums....I have learned

that each of us, no matter what ailments we may have can still lead a fully

enriched life full of love and happiness

Best wishes to all......Tana

>>

Thank you Tana, Its nice to hear from other Moms that feel the same way I do.

May 1, 2000

ann9055@... wrote: