fragile X

iVillage Member
Registered: 03-26-2003
fragile X
7
Thu, 04-27-2006 - 2:41pm

Keri mentioned fragile X in her post and it made me remember something the ped neuro said. She mentioned that we may want to do chromosonial (sp?) testing looking for fragile X some point down the line.

Has anyone tested for this? Results?

Just curious,
Christie

iVillage Member
Registered: 04-07-2003
In reply to: jinxgirl2001
Thu, 04-27-2006 - 2:54pm
Hi Christie, I was also told by our dev. ped. to probably have that checked at some point. Like I said earlier, my friend has a son with Fragile X and told me also to have that tested. It took them awhile to get the dx becasue the blood test doesn't come up fragle x it has to be tested exactly for that...confusing. I don't think we are going to do that...
iVillage Member
Registered: 03-26-2003
In reply to: jinxgirl2001
Thu, 04-27-2006 - 6:17pm

For some reason they seem to test all kids with ASD for fragile X. Not that it changes treatment much I think. Most of the kids I have known have gotten it and most have ended up negative. I think my SIL knows 1 kid with it. Even Dave has had the blood test for it, lol. Just to be sure. I only did it because he was getting a bunch of blood work for other stuff at the same time and he didn't have to get an extra stick for it.

Renee

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Registered: 02-20-2001
In reply to: jinxgirl2001
Thu, 04-27-2006 - 9:39pm
Bobby has the blood test.

 


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iVillage Member
Registered: 08-11-2004
In reply to: jinxgirl2001
Fri, 04-28-2006 - 8:36am

My DS was tested for it as well with other chromosome tests. They were all negative.


Well Behaved Women Seldom Make History
iVillage Member
Registered: 03-26-2003
In reply to: jinxgirl2001
Fri, 04-28-2006 - 10:06am

Thanks everyone. I don't think I am going to run out and get the tests done but if he happens to need other bloodwork I might have them run it.

Thanks,
Christie

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iVillage Member
Registered: 05-09-2003
In reply to: jinxgirl2001
Fri, 04-28-2006 - 10:24am
My pediatrician also recomended the John Williams test as well. He wanted my two year old to see a geneticist. I decided against it, though. Maybe when she's older. She's three now and I still don't think she'd handle bloodwork very well. (Not that she ever really will....)
iVillage Member
Registered: 03-26-2003
In reply to: jinxgirl2001
Fri, 04-28-2006 - 10:50am

Son had to have blood drawn last year (he was almost 7) to determine if his chewing was due to Pica/leading poisoning (it came back negative). I put off doing this test for several months because I KNEW he was going to be an absolute nightmare when he saw the needle. I finally made the appointment. I sat him down and told him step by step what was going to happen - everything from what the chair would look like to how they clean his arm - the elastic band for pressure, etc. He did fabulous.....no complaints, no whining.....he even watched the blood fill up the tube....he was interested in it....not scared because he know EXACTLY what was going to happen....no surprises. I guess it was my simple version of a social story. Anyway.....it worked for him. We never know how they are going to handle something.

Christie