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Information Please

Catherine Twomey see2mee at ix.netcom.com
Sat Sep 13 19:15:15 EST 1997

My 11-year-old daughter, Allison, suffers from a very complex neurological
disorder.  Of greatest concern is the fact that she suffers frequently from
a cyclical vomiting disorder that involves self-abusive behavior.  The
self-abuse occurs only when she is sick.  For several years her neurologist
has called this a migraine variant, but there is really no conclusive
evidence, it is just a best guess.  We have tried numerous migraine drugs
and some others, but nothing has helped.  At the moment she has been
vomiting for the past 18 days.  This is much longer than usual, but as a
rule, this occurs every one to two weeks and last anywhere from a few days
to two weeks.  

Has anyone ever heard of a case like this or have any suggestion of where I
might find information?  

Her only official diagnoses are congenital hypomyelinative
encephaloneuropathy, and probable Moebius Syndrome.  Her last MRI was
several years ago, but at that time, her corpus collasum indicated that she
only has about 1/3 the normal amount of myelin.  She has almost total
facial paralysis and cannot blink or close her eyes.  Despite this extreme
myelin deficit, she can walk with help (primarily uses a wheelchair), read,
and speak in full sentences.  

I would greatly appreciate any suggestion of where we should look for help.
 Incidentally, she has had the cyclic vomiting since she was about 2 months
old, so we have been trying to find help for 11 years.  I just thought the
Internet may lead us to help we have not been able to find thus far.  

Thank you very much.

Catherine in Wisconsin 
see2mee at ix.netcom.com

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