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Well in the near future we get to spend 3 days in childrens memorial. I 24-48 hour video EEG, MRI with sedation, Metabolic testing, GI dr testing for celeacs disease, and a new bunch of genetic testing. This new doc thinks she was mis- dx'd or dx'd before proper testing...so here we go agian
The VEEG isn't too bad. Ave had a 4 day VEEG last month and she did really well with it. The worst part about metabolic and genetic testing is the waiting. Some of the tests can take months to come back.
We have had the g-nome testing 2 different ways, been tested for prader-willi, fragile x, and smith magnas syndrom which all came back negitive but he wants them all ran agian. Im not sure way and how do they keep them on because my Breeanna doesnt like things in her hair and are they stuck in a room or can they play. The dr said the fact I mentioned a smell kinda made him do the "light bulb" thing
We did all those test (except the GI test) in November. I thought it'd be really bad, but it went pretty smoothly. Except that Carrie HATED the air gun they were using to dry the electrode glue on her head.
Hope it goes as smoothly for you guys!
"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."
Last edited by C&K'sMama; March 15th, 2011 at 08:55 PM.