Re: To test Children or not???

[Guest guest]

This is such a personal decision. I think its best to do what you can. Your

really not in a hurry to have them tested unless they are starting to have some

symptoms. If you would like them tested now you can do hat too.

I was told my older son had CMT in the emergency room after he twisted his

ankle. I was pretty shocked. Then I knew my son Adam had CMT he was 3 or 4 at

the time. Sure enough he had CMT. A year later I was told my daughter had CMT.

I had my oldest daughter looked at. She did not have CMT. I had a new born baby

that I could not bare to have tested.

I had all the CMT news I could take so I let it ride. At almost 9 years old now

he does not appear to have CMT. If I would have had him tested when I was so

stressed out and depressed it would have been reason to cheer me up and maybe

pull me out of some of the depression. If his tests would have come back CMT I

would have been more of a wreck.

[Guest guest]

What type do you have? If it's CMT1A, by all means, get them tested. It just

requires a blood draw. I had my baby tested when I had an amnioscentesis. I

didn't specifically have the test to find out about CMT but while they were

testing I asked them to check for CMT at the same time.

More invasive (or painful) tests like NCV and EMG's may not be warranted unless

your children are having symptoms/problems. Even then, if you know what YOU

have and they're having problems, then you'll know what THEY have. Why subject

them to the tests?

[Guest guest]

Hi, as a dad of 3 I have very strong thoughts on this. Here is my thought

process.

1. Once you know the symptoms of CMT you will have a good ides if you child has

CMT., at least in a bad enough form you can tell. If no symptoms then no need

to test as if they do have it, it can't be that bad.

2. If you get them tested and it is positive you now have to state that for Life

Insurance applications, which could lead to them declining the application.

3. It they are positive and you tell them, it could " label " the child with their

peers, could do more harm then good.

Here is what I am going to do. I am pretty sure my 6 year old daughter has it,

she used to wake up in the middle of the night screaming of pain in her foot. I

have her on Low dose Vit C and it has helped alot. Although now if she has a

very busy day running around she still gets the pain. I will not get her tested

until after she is old enough to understand or if it gets so servere that she

cannot handle the pain. Mostly I am doing this for insurance purposes. I have

been declined once already and do not want her to through this.

Hope this helps.

[Guest guest]

That was about the only good thing about my kids having CMT. They didn't have

any tests done other then a look and see at the doctor's office.

[Guest guest]

Although I have no children (it was a personal decision not to due to

CMT) I had a EMG/NCV test done this past August. I was diagnosed with

CMT at age 2 back in '73 but never knew what type & I really wanted to

know for my own good. I thought that giving this test to a kid would not

be a good thing. I thought I was gonna pass out at one point. I can

handle pain (I don't have any from my CMT tho) but I almost cried. Even

after they numb the area/s tested & you can take something prior to ease

the pain. So if your kid/s don't absolutely need to be tested unless

they progressly get worse, DON'T. JMHO.

Kerry

[Guest guest]

>So if your kids don't absolutely need to be tested unless

they progressively get worse, DON'T. JMHO.<

I agree, blood test only, lol

[Guest guest]

>

> I have been back and forth about getting my children tested. I would

> like to get some of your thoughts on this.

>

> What are the pros and cons of finding out if they have it also?

> (I have small 5 children) If this is a no-brainer- please forgive

me,

> but I have just recently been diagnosed and all of this is new to

me.

> Any and all thoughts about this would be helpful.

>

> Thanks.

>

> MomOfMany

Thank you all for the replies. My husband and I are more along the

lines of not testing until they show symptoms. The reasons are

basically the sam as the poster who replied, for it not to be on their

medical record, not having them " labeled " and if there is not anything

that can be done til they show symptoms, then there isn't much point.

I just want to make sure I am making a wise decsion.

[Guest guest]

Getting your children is a personal choice. I like everything I've heard lately

from others. All good stuff.

I have only one concern, and I have posted it before. That is insurance

companies. If your child is tested these results go into his/her medical file.

This becomes the dreaded " pre-existing condition " . Your children would probably

have a hard time getting long-term disability insurance personally or through

benefits that may be offered by the company they would may for in the future.

I think that is one of the cons of getting your children tested.

Regards,

[Guest guest]

I'm not really sure about this but I think makes a good point.

My question is whether CMT counts as a pre-existing condition. I mean, some

folks never have symptoms and others have lots. Just because you know that your

genetic code has a hitch (and hey, whose doesn't? lol)

that would make it a pre-existing condition?

Seems to me that in the future when everyone knows so much more about

genetics/DNA, EVERYONE will have a pre-existing condition of some sort??

Personally, my insurance hasn't ever considered CMT a pre-existing condition

(life, medical, or long-term disability) and it's been in my records for a

looonng time. ly, they probably have no clue as to what it is and just

ignore it

[Guest guest]

I agree with the insurance issues of " pre-exisiting " conditions. We won't test

our children until we have too for that reason. Both my husband and I are

insurance agents for several individual companies, and it raises big problems.

Too many doctor's have their opinions not medical facts in records!! And you

have nightmares getting things removed that are incorrect from the record.

Kids are 20, 18,16, 7.

Thanks,