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Talk to me about Fragile X Syndrome

ABColeslawABColeslaw member
in Special Needs
It was on a list of recommended genetic tests that we recieved in the mail today.  As a reading and language specialist, I know exactly what the condition is.  I'm just wondering if its a standard recommended test or if I should be alarmed.  Anyone on here have a kiddo with Fragile X?  I know there is a wide range as far how how much it affects each child, but I'm a worrier by nature so I'm just looking for more information.  The only students that I have had with fragile X were high function autistic children.  Honestly without the blood test, you'd never have known.
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Asher Benjamin and Lola Aisling

 Infertility
PCOS, Progesterone Deficiency Disorder, Multiple Miscarriage
Clomid, Metformin, Ovadril, PIO, P17 Iron/Platlet Tranfusion

My Spring Babies! 
<3 Angel Baby   Elisabeth Adelle  April 2008 <3
Asher Benjamin  April 2010
Lola Aisling  May 2014
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Re: Talk to me about Fragile X Syndrome

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    ABColeslawABColeslaw member
    Okay thats what I thought.  Its hard to say at 2 where a child's overall cognition is at, although I would say Asher is close to average give or take in either direction.  Interesting.  I think I will have myself tested then, because I'd rather not subject him to more tests if it can be helped.  Thanks for the info
    image
    Asher Benjamin and Lola Aisling

     Infertility
    PCOS, Progesterone Deficiency Disorder, Multiple Miscarriage
    Clomid, Metformin, Ovadril, PIO, P17 Iron/Platlet Tranfusion

    My Spring Babies! 
    <3 Angel Baby   Elisabeth Adelle  April 2008 <3
    Asher Benjamin  April 2010
    Lola Aisling  May 2014
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    houndbabyhoundbaby member

    When we had ds's evaluated for ASD they wanted us to have ds tested for Fragile X, they said while they didn't think he had it, they wanted the test done because he had deep lines in the bottom of his feet, which most people who have Fragile X have these lines in their feet. (We all examined our feet after this and it seems to be a trait from my side of the family). We did the blood draw and in 1-2 weeks got the results back that he didn't have it.


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    JcrabJcrab

    My DS was also tested just to be thorough (he has mild CP and developmental delays). We were told it is standard to rule it out and since our insurance covered it and we were doing other labs anyhow we didn't mind.

    I'm sorry they recommended you don't have more children, from the information given that seems severe and inappropriate. When we met with my son's new neurologist she assumed we weren't going to have any more kids because of his issues (which really aren't that severe as far as SN go); I had to make her feel awkward when I explained that I was already several months pregnant and our geneticist hadn't felt there was a real reason future offspring may be afflicted. 

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    MirandaHobbesMirandaHobbes member
    Frag X was also one of the tests they did with DS. All his tests came out negative.
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    FlgBrideFlgBride member
    We recently received a diagnosis of FXS for my son. We were told it was a standard test to rule things out. No one expected my son to have it. We were told by a neurologist that has seen several FXS kids that there was no way my son was affected. G appears to be very normal cognitively at this point. His only delays are gross motor. I would have never guessed that I was a carrier for this syndrome. Anyway, your physician is probably just trying to rule things out.
    dx: Fragile X Syndrome
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