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Fragile X syndrome!

Posted by on Jul. 8, 2011 at 5:52 PM
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I am just curious if anyone here has a child or family member with this diagnosis? We believe that my daughter has this since it is the only thing that is similar to her. Thanks!

by on Jul. 8, 2011 at 5:52 PM
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Replies (1-5):
hbeam27
by on Jul. 8, 2011 at 9:35 PM

Bump for you....i have no idea what this is.

sayres
by on Jul. 8, 2011 at 9:59 PM
Welcome. I have no experience with this either. Have you made an appointment with a geneticist (sp?)
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DaniUy
by on Jul. 9, 2011 at 1:53 AM

Hi, I have a son ho is  affected  by Fragile X  he is 16 years old. I know this syndrome pretty well since we made his diagnosis in  1998 and I have been studying it since then with Dr. Randi Hagerman . You can get info at www.NFXF.org

Or if you have any questions I can help you too., do you have more children?

best

 

 

 

willysmama
by Valerie on Jul. 10, 2011 at 10:32 AM

Hi and welcome! i don't have a whole lot of experience with it. I have a friend that has a son with it. I don't get to see them that often.

Sally_Nada
by on Jul. 28, 2011 at 7:10 AM

I have children with FX, it's important that you have her tested, and it's very important that they run the correct test.  Child should be tested with Southern Blot and PCR Analysis (aka FMR1 DNA test), a chromosome or microarray analysis cannot be used alone to detect fx, too many false negatives, they are only reliable in diagnosing FX if it is due to a deletion of the gene. Hoping you do test to rule it in or out.

FX can affect a family across generations, older carriers may be at risk for FXTAS (fxtas.org) and femaile carriers may be at risk for FXPOI (which may result in early menopause).

Please connect with me directly if you like. hugs, Sally

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