rare disease or dystonia?? Pls help

Stefano casalotti - ST stscs at mucc.mahidol.ac.th
Tue Dec 19 14:33:47 EST 1995

Dear Netters I would like to ask if any one in the medical field has any
experience or suggestions about a strange illness that has affected my
niece ( I am Neurobiologist but have no clinical experience. Presently I
work in Thailand while my niece who is half Thai and Half American lives
and is being treated in the US.. Should the doctors that are treating my
niece read this message , I would like to state that this is entirely my
initiative and that the parents of the girl have full trust in the doctors
ability to deal with this illness.)

In brief it all started (maybe) with an ear infection and light fever. 
Noticed that the girl (2 and half years) would fall more often than usual
The first strange episode was shaking of left for 30 seconds repeated for
4 times.  Then the falling got more frequent, to the point that she cannot
take more than 10 -15 steps without falling. Two abnormalities seem
evident clinching of the left foot (and falling) and wide swinging of left
leg. Immediately after the leg shaking episode the girl was taken to
Standard hospital where over several days she has received several tests
including MRI of brain and spine, EEG, lumbar puncture, analysis of CSF
with culture, blood test. All of the tests have resulted negative (some
culturing still going on) thus the doctors are focusing on dystonia Does
any have an opinion on this diagnosis, are there other possibilities? Any
suggestion are most welcome. As of now (3 weeks after first episode) the
little girl is still unable to walk unaided. Recently (I mean in the last
few months) she has also been experiencing night terror with frequent
waking during the night and a brief state of confusion after waking.
 Thank you for your help
 stscs at mucc.mahidol.ac.th

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