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amother









  
Post 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!
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Clarissa









  
Post Posted: Wed, May 07 2008, 2:57 pm       Post subject: re: Fragile X
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.
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amother









  
Post 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.
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GAMZu









  
Post Posted: Wed, May 07 2008, 7:11 pm       Post subject:
No experience with this issue, but wanted to send you good thoughts and wish you hatzlocha!
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amother









  
Post 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?
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amother









  
Post 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!
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amother









  
Post 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...
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amother









  
Post 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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happyone









  
Post Posted: Thu, May 08 2008, 12:50 pm       Post subject: Re: re: Fragile X
amother wrote:
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!


There's a major difference in knowing your DNA, to having your child being tested for Fragile X. It's insensitive to tell this amother that it's no big deal.
besides which, when it comes to fragile X - it's not about 'matching'.
amother, PM me, I have a friend that has a child with fragile X. I could have you talk to her.

A blood test could give you those answers. Schedule an appointment with a good geneticist that can do the necessary tests.

Lots of luck.
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DefyGravity









  
Post Posted: Thu, May 08 2008, 1:10 pm       Post subject:
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.
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ShakleeMom









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

amother did you do it ?
_________________
“Floss only the teeth you want to keep.”
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amother









  
Post 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?
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amother









  
Post 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.
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amother









  
Post 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.
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Marion









  
Post 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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Shai Michael: 8 Cheshvan 5768
Yitzchak Meir: 19 Iyar 5770
Dvir Aharon: 10 Tammuz 5772

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amother









  
Post Posted: Thu, Jan 24 2013, 4:48 am       Post subject: re: Fragile X
ivf pgd
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Isramom8









  
Post 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!
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amother









  
Post 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.
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amother









  
Post 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.
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amother









  
Post Posted: Thu, Jan 24 2013, 9:32 am       Post subject: re: Fragile X
I didnt mean this time. I meant in a previous thread.
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