Fragile X syndrome & Blood test-wwyd?

Avatar for kittikatkate
iVillage Member
Registered: 01-15-2004
Fragile X syndrome & Blood test-wwyd?
11
Wed, 10-19-2005 - 3:05pm

Today the neuro said he wanted ds to get a blood test to test for Fragile X syndrome and to see the amount of lead in his blood. He said these usually always come back negative but just in case.

I did a little bit of research on the internet and I have a question--is this really necessary? My ds is terrified of needles and I can't see holding him down to draw blood for something like this.

He did say he watned an OT to evaluate him but doesn't thing he has an ASD.

I don't know...but I am just not crazy about this blood test.

kate

Pages

iVillage Member
Registered: 03-26-2003
Wed, 10-19-2005 - 3:18pm

hi kate,

i am in the same boat as you. i have a labsheet written 18 months ago for the same bloodwork. lead testing can be important, especially if you are in a high risk area. however, fragile x i chose not to do. my sons don't have signs of obvious fragile x. and if they did have it, it doesn't change our situation as we are not having anymore kids.

our dev ped said it was not mandatory. if you are planning on more kids, it might be worthwhile though.

valerie

~Valerie
Avatar for kittikatkate
iVillage Member
Registered: 01-15-2004
Wed, 10-19-2005 - 3:22pm

no, we aren't having anymore.

I am just thinking...ok, what will the test results change? I guess I am just not familiar enough w/ Fragile X. From what I've read there are physical characteristics also??? Why would he recommend Fragile X testing but then say he doesn't have an ASD but does have Sensory Integration Disorder?

I am just not crazy about pinning my 4 year old down while screams bloody murder for this test.

iVillage Member
Registered: 03-26-2003
Wed, 10-19-2005 - 4:12pm
usually they only check for fragile x if autism is diagnosed--that is my understanding. and if you have an autism diagnosis then it doesn't matter because then you probably have the correct services in place.
~Valerie
iVillage Member
Registered: 03-26-2003
Wed, 10-19-2005 - 4:37pm

I wouldn't do it either and I still don't. I don't put Mike through anything traumatic like that unless it is neccessary. As of his last shot or blood test 2 years ago he still had to be held down and he is 9 now.

If there is a chance that there is lead he is exposed to and that could make a difference on his treatment as well as getting worse. Then I would do that and they can get enough blood at the same time for fragile x. But I wouldn't do a separate fr. x test.

Renee

Photobucket
Avatar for kittikatkate
iVillage Member
Registered: 01-15-2004
Wed, 10-19-2005 - 4:42pm

I am going to call the doc tomorrow and tell them that at this time I am not going to get the fragile X or lead blood testing done.

I am with Renee--I don't want to put Dylan through it if it's not absolutely necessary and I as his parent don't think it's necessary.

Thanks for everyone's input!

kate

Avatar for cathby
iVillage Member
Registered: 05-16-2003
Wed, 10-19-2005 - 6:30pm

Hi Kate,

I'm in your same boat!

My dev. ped. (and a friend of mine who is a ped. and her DH who is a dev. ped) recommend a Fragile X test for anyone with autism.

That said, she told me that *I* could be tested (it's a gene abnormality carried by the mother) to see if I'm a carrier. If I'm not, then there's no need to get DS tested. I checked w/ my OB to see if being a carrier was something included in my amnio (different child -- I've only had one amnio) and it wasn't. So I gotta' call my internist and get tested.

HTH,
Cathy

P.S. Also, lead is the #1 cause of developmental delays in children. So that I would definitely do.

iVillage Member
Registered: 06-25-2003
Thu, 10-20-2005 - 8:08am

Kate,

When is his next annual physical? What I did, was wait until then, as they were taking blood anyway, and ad them take extra for the fragile x at that time.

Of course, blood for fragile x is a venous draw, whereas in younger kids, the blood test for the annual physical is a finger stick, so it still added to his stress. It took five of us to hold DS down for the blood draw, and I felt very guilty. The test was negative.

That's just my story. Take from it what you will.

-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 09-16-2005
Thu, 10-20-2005 - 8:22am

actually - most anytime delays are suspected - most dev ped's and neuro's will ask for a fragile X bloodtest - autism or not

iVillage Member
Registered: 04-11-2003
Thu, 10-20-2005 - 9:06am

I'd do the lead test also. It was the first thing we has checked when dd started having problems. Its just a finger stick.

We haven't done a fragile X test for Kyle, either.

Samantha

Samantha
iVillage Member
Registered: 12-22-2003
Thu, 10-20-2005 - 9:27am

I find this fascinating- even having two children on the spectrum, nobody has ever even suggested testing for fragile X.

The lead, in our case, was a non-factor. Our first two homes were less than 6 years old.

Amy W.

Meez 3D avatar avatars games

Pages