testing children

[Guest guest]

I have not had my 14 year-old son tested for the exact reason you have

expressed. If he gets labeled now, it will follow him throughout his entire

life, which will make getting insurance very difficult.

This may be very important to him later in life if he ever needs to go on

long-term disability. Insurance companies just love to use the term

" existing condition " , in which case they refuse to pay.

I did not begin to experience many of the CMT symptoms until in my late 40s.

Now at age 54 things are getting worse, especially with pain, weakness and

fatigue.

My son is very aware of my disease, and we do suspect he has CMT - toe

walker, high arches along with weak and easily sprained ankles. Minor

symptoms at this time.

We have agreed on a wait and see approach for now. No labels at this time.

Beckingham

Corporate Nice Guy

[Guest guest]

We haven't had any of our four tested. I was refused Arizona Blue

Cross/Blue Shield because of my CMT and I don't want my kids labeled.

I have one child who has contractures in his legs that force him to walk

on his toes. He's had tendon release surgery twice. He has no symptoms

of my kind of CMT though. He's been tentatively diagnosed with CMT,

diplegic cerebral palsy or idiopathic toe walking. I have another child

with generalized weakness and gross motor delays who does not have my

symptoms of CMT. There is no tentative diagnosis for him. The other two

are 'perfect'.

I say to treat the problem at the symptom level and not to worry about

the source. We can't reverse CMTs effects so it isn't a focus of mine.

[Guest guest]

If I remember correctly, the lancet that comes with the kit makes the experience

more difficult. I would get one where you don't see the blade. Just hold a

plastic thing on the skin and push a button. You don't have to see the prick,

and there is no chance of cutting too deep.

Does the kit have instructions on how and where to do it? A ring finger is a

good spot, about a third of the way from the tip to the first joint on the palm

side, and a little to the baby finger side of the center.You need a spot where

the skin is soft and the blood is close to the surface. His heel may be too

callused by now for a heel stick to work.

You could wait until he hurts himself accidentally and then catch a drop of

blood.

testing children

Well, after a year and a half of resistance, I finally ordered a test

kit for my 5yo son. I know to some of you that may seem like child

abuse to go on feeding him whatever, but being a mixed A/O household,

I've tried to stick to as many foods as are common to both as possible

anyway. I know most people here aren't that judgemental, so I come

humbly asking for information.

My question is this, can I do a heel stick on him or do I have to do a

finger stick? He's a very strong-willed child and nearly burst into

tears when the kit arrived. He's begging me not to do the test. Any

advice on how to do a blood test on a child who doesn't want it done

would be deeply appreciated. Why they didn't do it as a newborn in the

hospital is beyond me, especially since he was jaundice. The hospital

where my daughter was born considered blood type to be crucial to

understanding a newborn's health.

Help!

-Robin

[Guest guest]

One unexpected bonus of all this,

Like I said, it took me a year and a half to get up the nerve to poke

my son. During that time, I have gone from a size 12 to a size 6. I

have more energy and sleep less. I don't force this on my family, but

it helps that I'm chief cook and shopper. I'm a firm believer in

teaching by example, not preaching.

So this morning I go to get my LR4YT and I can't find it. Funny, I had

it last night next to the rocking chair before I had to go spend an

more than an hour trying to settle my 2yo down to sleep. Hmmm. Could

it be? Yes! It's on my husband's night stand!!!!

-Robin, the minority O

[Guest guest]

I don't think I'd run a blood test on a symptom-free child. When he has to get

insurance on his own or your insurance changes, it would be a preexisting

condition at best and reason for denial at worst. Some CMT is late onset.

The thing about nerve tests: if you could get a doctor to run one anonymously

and pay cash, then it wouldn't be on the record, and you'd know. My husband's

neurologist says the nerve tests are abnormal even before symptoms set in.

None of my sons or stepsons are interested in being tested. It would be

different if there were a real treatment. Anyone can take the Vitamin C since

excess in the blood is simply excreted in the urine. Wait for testing until he

needs braces or surgery or some expensive treatment or there is some

preventative measure that can be taken. What good is knowledge without

treatment?

Elinor

[Guest guest]

Thank you for the welcome. I also debated on whether to test my children. When

my son was 7 he suffered a major stroke due to a blood clot to the brain. His

neurologist ordered the test because he had foot drop. She wanted to make sure

that it was related to CMT and not the stroke. Since he had the blood test, she

recommended that the other 2 children who had the symptoms be tested as well

with the blood test. I am glad that I had them tested because without the

diagnosis, it is hard to get the help they need at school with OT services with

their fine motor control.

Kathy

[Guest guest]

Negative blood test doesn't mean no CMT. That is: You can have CMT and a

negative blood test. They haven't got the tests refined or complete enough yet.

Pre-existing condition is a big deal for insurance. When your kid is older and

has to get insurance on his own or through his work, it makes life a lot more

difficult. IMHO don't test unless there is a good reason to.

Elinor