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Looking for info, any Moms of girls with Retts or Fragile X?

Posted by on Jul. 10, 2008 at 1:18 PM
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My oldest daughter is 10 1/2, severely autistic with lots of seizures. Lilly was tested for all kinds of genetic disorders when she was first being diagnosed. Her doctors told us they were certain she had a genetic disorder, but everything came back negative. Now eight years later, still non verbal, not really potty trained and starting to have more problems instead of less. Lilly is more disconnected then she has ever been, she's more angry, more self injurious, they want to do testing for Retts and Fragile X and maybe more,  again, the tests are better now. Anyway, I was wondering if anyone could give me some info, if this sounds anything like anyone else's child. Any help would be appreciated. Thanks.

by on Jul. 10, 2008 at 1:18 PM
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Replies (1-3):
mickiesmom
by Group Owner on Jul. 11, 2008 at 2:38 PM
Hi:

Have you ruled out digestive issues also? and are you implementing any biomedical inteventions? Is she on digestive enzymes, multivitamins, minerals, etc.

Is she on seizure medications? Picnogenol, Germanium and Beta Glucan are suppossed to help with seuzures, just a suggestion.

I don't know about those tests, other than to tell you that Micke had them nine years ago and just like your daughters everything came back negative. Anyhow, I don't see how that is going to help her.

Even if she has severe autism, there is so much you can do for her, to make her confortable within her disability. Let me know if I can help in any way.

Take care,
Zurama
craftyleah
by on Jul. 12, 2008 at 7:24 AM
 We have ruled out all digestive issues. Lilly is on seizure meds, but still haveing absent seizures 2-6 times a day and occasional tonic clonic siezures.  I don't know how having the tests will help, but I'd rather check than not.  She is a wonderful girl, she can be so happy and she is so affectionate and loves to laugh! I just want the seizures to stop, I want her to stop hurting herself so much, and I'd like to see her less anxious and not so quick to tantrum. I've just reached a place where I don't know what else to do to help her. She is the light of my life. I can deal with most of her issues, I just hate to see her so unhappy.
FXmomTo3
by on Jul. 24, 2008 at 10:36 PM

Hi there....I have three children with Fragile-X.....your daughter sounds much like my son.....why don't you take a look at my video and if you have any questions, let me know.....I can certainly share some experiences with you.....

Here's some points of interest for you to look at.....Many carriers of the Fragile-X gene experience some medical problems....now, because this is your daughter, the gene could come from either you or your child's father.....(if it is a boy, it would come from the mother as a man cannot pass it to a boy).....soooo, looking at both your family and the father's family, are there any women who have gone through early menopause or premature ovarian insufficiency?  cysts on the ovaries?      how about any women OR men who develop a tremor in their hands/head/tongue, etc......????   somewhat like Parkinsons......   how about any men that have developed dementia in their later years?     If you see a trend of these symptoms in the families, I would say there's a pretty good chance its FX......BUT, on the other hand, if you don't see these symptoms, it doesn't exactly mean you are in the clear either.....

  Your daughter sounds as severe as my son....my girls are pretty mild, but my son is just now starting to talk, still toilet training, and self-abusive.....you say she seems to be more severe as time goes on....this definitely happens with autism/fragile-x or similar misabilities the closer a child gets to puberty.....hormones!!!

Anyway, I'll leave you with that, but feel free to watch my slide show and/or ask me questions....

Take care,

Tammy

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