Anyone Hear Of Fragile X

7 Replies
krnj - February 15

Well my dr's office called me and apparently I'm a carrier for this gene. They want me to go see a genetics counselor. I looked it up online & didn't like what I saw. Now I'm totally freaking out!!!

 

mommybabyboy21 - February 15

my genetic counselor said that if you test positive they would recomand an amnio and the amnio can be more conculsive...that is all the advice I could give you

 

squished - February 17

Fragile X is an inherited syndrome that causes the baby's bone to be extremely brittle. Touching them too hard, bumping into things when they are little, even tigher fitting clothes can cause their bones to break. Kids with this syndrome suffer numerous broken bones throughout life. Swimming is great for them to do because of the protectant quality of the water. There was a Discovery channel show about it, maybe you could find it online to watch. And just b/c you are a carrier doesn't mean that your baby has it. Sometimes it's not pa__sed on and hopefully it hasn't in your case either.

 

Mae - February 18

My cousin has fragile X- he just basically has the mental capacity of a 6 year old. My aunt and uncle did not find out it was fragile X until a little over 2 years ago when I was pregnant with my son-just because you are a carrier, does NOT mean that your child will have this....

 

Mae - February 18

ps-it doesn't really have much to do with the bones, like squished said, I'm not sure why that was mentioned, it has to do with the X chromosome having a "weak" leg` (hence the name)-it is similar to downs syndrome....

 

suze42 - February 18

karen just remember that the screenings OFTEN come out as false positives!!! Whether its downs, spina bifida or trisomies...its just a screening. Im sure fragil X is pretty uncommon, even more so than the others!

 

krnj - February 18

Thanks for responding everyone. I feel a little better about it.

 

sahmof3 - February 18

I think it can also be very mild. My son's school psychologist is evaluating my son to see if she thinks he needs to be tested for some disorders... because of some behaviors and social skills problems he's had over the years. High-functioning autism was one, Fragile X was another. I don't know for sure if he has it yet or if she will end up recommending the blood test, but he has no learning disorders and is in "normal" kindergarten, leads a regular life for the most part.... and the psychologist said it could still be a possibility... so that's why I think it can be very mild as well.

 

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