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Has anyone taken their child to a Geneticist? ETA- Fragile X
I took Ava today, to a a Dr. Tegay at NYIT. We will be getting blood work and then will need to wait three weeks for results.
Anyone?
************ETA**************
After reading the above posts, and looking at the blood work RX, I think that the Doctor is testing DD for Fragile X. He didn't come out and say that is what he was specifically looking for.
I never heard of it before, and was just checking it out on several sites. She has most of the symptoms, but does not have intellectual deficits/delays. But, from what I read, I guess this would vary from person to person.
Should I call him tomorrow and ask specifically if this is what he was testing her for?
Message edited 2/21/2012 11:34:21 PM.
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Posted 2/21/12 8:15 PM  |
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smdl
I love Gary too..on a plate!
Member since 5/06 32461 total posts
Name:
me
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Re: Has anyone taken their child to a Geneticist?
We went to see one at Winthrop. We got a script for bloodwork to do test of array a multitude of tests.
We decided not to proceed. DS was traumatised already from seeing Dr. and blood work. I do mean traumatized. Like full on scared for his life.
We were told the result would only be 25% accurate for anything that would show.
It was not worth it in our case.
I will get tested for test of array if I get PG.
Apparently if you are not PG, they test your kid. If you are PG, they test you if you have another kid with SN. We were only interested if we had another child.
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| Posted 2/21/12 9:30 PM |
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ruby
you rang?
Member since 6/08 5573 total posts
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Re: Has anyone taken their child to a Geneticist?
The developmental ped that diagnosed DS suggested we do this but we didn't. She asked if had genetic testing done while I was pg with him (for things like fragile x, etc.) and I had and was not a carrier for anything.
We decided to hold off on testing DS. To be honest we never even got to ask the developmental ped exactly why we should get him tested....would you mind sharing why this is done?
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| Posted 2/21/12 10:16 PM |
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Re: Has anyone taken their child to a Geneticist?
My DD has never had a clear diagnosis.
She has some physical traits that I believe may be related to each other and in turn may possibly be related to her other issues.
I feel that we have done everything else possible, and this is the last avenue that we can explore.
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| Posted 2/21/12 10:50 PM |
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A3CM
Avatar Title
Member since 9/08 3762 total posts
Name:
Mommy
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Re: Has anyone taken their child to a Geneticist? ETA- Fragile X
my DH was tested for Fragile X, if he came back positive they would have tested me (i was pregnant at the time), but we did not test DS. he did get other blood work done, and it was brutal...
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| Posted 2/22/12 7:12 AM |
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BargainMama
LIF Adult
Member since 5/09 15657 total posts
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Re: Has anyone taken their child to a Geneticist? ETA- Fragile X
We had a fragile X test done, since they typically recommend it for kids on the spectrum. It wasn't done by a geneticist though. Just the developmental ped. It did come back negative.
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| Posted 2/22/12 8:10 AM |
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rbsbabies
LIF Adolescent
Member since 12/08 544 total posts
Name:
Melissa
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Re: Has anyone taken their child to a Geneticist? ETA- Fragile X
We had the Fragile X test done by a neurologist, it was -
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| Posted 2/22/12 10:49 AM |
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dpli
Daylight savings :)
Member since 5/05 13973 total posts
Name:
D
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Re: Has anyone taken their child to a Geneticist? ETA- Fragile X
It was suggested to us by the neurologist. My DS is diagnosed with a spectrum disorder and the neuro seemed to think it would be a good idea to rule out Fragile X. I got the impression that it is fairly common for them to refer kids on the spectrum.
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| Posted 2/22/12 11:43 AM |
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RMA9728
LIF Adolescent
Member since 1/08 863 total posts
Name:
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Re: Has anyone taken their child to a Geneticist? ETA- Fragile X
We had it done and it was negative.
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| Posted 2/25/12 12:37 PM |
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