Any experience of Fragile X?

[littlemissbossy]

Do any mumsnetters with special needs children have experience of the genetic disorder know as Fragile X syndrome?
Any info will be much appreciated, thanks in advance lmbx

Hi Bossy
Just seen this. Sorry bit late and I expect you've got the tests done now but if not, it's simply a blood test carried out at your local hosp and sent to the nearest genetic hosp to you,
Go to fragilex.org for more info.
My two boys have it, both severely learning disabled.
If you see this do let me know what's happened since June!

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Stupid phone. Sorry unpaid. It was meant to say that the OP was from 2004

Testing

Oh haha Ben how funny. i didn't look that thoroughly obviously! Doh!
Oh well I guess the poster will know by now one way or t'other!!!

I was actually looking for the post a few wks ago from a poster asking about FXS as her son being tested. But couldn't find that one. I wondered if she'd heard owt....

my son whos 8 asd is being tested for this very soon , just been reading about it myself , my son head is on the larger side ,,, hes very bright and above avg IQ for his age but acts very young more like a five year old .

Hi Babs
Look for the high pallette in his mouth, that's normally the first thing they check for re physical features.
If you get him tested and he has it just to let you know I have 2 boys with it so here I am if needed!! I tend to pop on and off, sometimes not for weeks depending how busy i am but I generally pop back on at some point.