Fragile X

Posted: Wed, May 07 2008, 2:48 pm Post subject: Fragile X

Does anyone here have a child with Fragile X syndrom. The doctor wants us to test for it and the thought kind of scares me. It doesn't seem so highly likely due to what I have read on line, but my son's OT is going to help me look more seriously into it. She is speaking to a developmental ped for me (who she is good friends with anyway, so she said she would do that for me.) to see what she says.

BH he is a healthy child (with more minor issues, but overall seems healthy) who has given us WAY too many scares lately... Any chizuk would help!

Platinum Member Joined: Jul 27 2007 Posts: 14738

I don't know about Fragile X, but if your doctor wants to look into it, why not make an appointment yourself with a developmental pediatrician? We saw a wonderful one who gave my baby a very thorough exam.

Posted: Wed, May 07 2008, 6:45 pm Post subject: re: Fragile X

I don't have kids with it, but people close to me do. Fragile X is not a death sentence and there is a very wide spectrum of ability in Fragile Xers. Many are mainstreamed in normal classes. You should just get tested. Turning a blind eye won't help anyone.

Platinum Member Joined: Nov 30 2006 Age: 28 Posts: 8702

No experience with this issue, but wanted to send you good thoughts and wish you hatzlocha!
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Posted: Thu, May 08 2008, 11:48 am Post subject: re: Fragile X

No plans of turning a blind eye. At this point, I am looking into the options. We are probably going to see a developmental ped and then decide (with our rav) if we will do testing.

a1 been thru genetic testing?

Posted: Thu, May 08 2008, 12:18 pm Post subject: re: Fragile X

My husband and I have both been through a series of genetic testing. I am a firm believer in knowing your own DNA, not testing through services that just tell you and your potential husband if you are a "match" or not. It is really no big deal amother, good luck!

Posted: Thu, May 08 2008, 12:24 pm Post subject: re: Fragile X

I don't mean genetic testing for me and my dh, I mean for my child. It might not be a big deal to see what you are a carrier for, but testing a child for a "syndrome" is a big deal. I am sorry that you don't see it as such, but I do find your post offensive to someone going through a hard time...

Posted: Thu, May 08 2008, 12:32 pm Post subject: re: Fragile X

OP-- couldn't you take a blood test to find out if you are a carrier for the disease? Because if you aren't then your child can't have it. If you are a carrier, then you can do the more invasive testing on your child.

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Moderator Joined: Dec 26 2005 Age: 33 Posts: 11430

I think the poster thought that amother was talking about genetic testing in order to see if one is a carrier and was saying that it's not a difficult procedure to have. I think her statement, "no big deal" was totally taken the wrong way.

Posted: Tue, Mar 03 2009, 2:41 pm Post subject:

BUMP

amother did you do it ?
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Posted: Tue, May 22 2012, 9:37 pm Post subject: re: Fragile X

OP, I am a carrier for fragile x. Are you still keeping up with this thread?

Posted: Wed, Jan 23 2013, 10:27 pm Post subject: re: Fragile X

bump..looking for women like me who are carriers for fragile x and what they do about having children.

Posted: Wed, Jan 23 2013, 10:41 pm Post subject: re: Fragile X

im not the op, but I have a child with premutation fragile x. he is an adorable child who needs some help. I dont know if I would even test me aat this point. if hashem will sit I would go on having children without testing. I do ask hashem he should not give me a child with fragile x again, but it is definately not a death sentence. the only way u can be sure not to have a child with fragile x I sto go through the ivf process, or test in begining of pregnancy and if the chil dhas fragile x abort it. which neither of those is an option for me.

Posted: Thu, Jan 24 2013, 2:19 am Post subject: re: Fragile X

We tested DS for Frag-X 3 years ago (maybe 4? I don't remember anymore). It involved a blood test. Definitely not a difficult process.
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Posted: Thu, Jan 24 2013, 4:48 am Post subject: re: Fragile X

ivf pgd

Posted: Thu, Jan 24 2013, 7:26 am Post subject: re: Fragile X

The thing with this test is that at least you'd know what is causing your son's challenges, if it's positive. Either the child or the mother can have the blood test. (If the mother isn't a carrier, the child can't be affected.)

This thread is a few years old, I wonder what the OP found out, and how the child is doing!

Posted: Thu, Jan 24 2013, 9:17 am Post subject: re: Fragile X

I am not the OP, I was the one who bumped it up. None of you are telling me anything new. I dont have a child with fragile x but I am a carrier. Ive been through a lot which obviously I cant mention on imamother. Because people on this site can be very judgmental even though Im not looking for judgments. I bumped it up thinking I could find people who are in my situation and had similar experiences as I. unfortunately I cant do this without many of you passing judgment. For the record I did do ivf with pgd. Its not so simple, it didnt work and bonei olam cannot fund me at this time to do it again.

Posted: Thu, Jan 24 2013, 9:30 am Post subject: re: Fragile X

Last amother - I'm sorry you felt judged, but I think everyone gave helpful responses to you with the information you gave.

Posted: Thu, Jan 24 2013, 9:32 am Post subject: re: Fragile X

I didnt mean this time. I meant in a previous thread.