dana30

My 4 year old daughter was recently diagnosed with a very rare form of
epilepsy, Electric Status Elepticus during Sleep(ESES). Our daughter,
whose development had previously appeared to be normal, is now
currently exhibiting speech and behavior problems that are associated with
ESES. She has also regressed in other areas as well. She was diagnosed
with ESES through her symptoms as well as EEG's, and Video EEG's.
She underwent a course of high dose valium, after which a subsequent
Video EEG showed no signs of ESES. After that, we noticed a great
improvement in her speech, behavior and other areas. However, a few weeks
after the first course of valium, the symptoms associated with ESES came
back as my daughter appeared to regress in each of the aforementioned
areas. She is now on her second course of high dose valium.

Since this disorder can have a permanent effect on her speech,
behavior, cognitive ability, and ability to lead a normal and independent life,
we of course are trying everything to treat/eliminate it as early as
possible.

Does any one know any doctors who
specialize in ESES, or have dealt with patients who had ESES? Have you heard of any treatments/procedures that have proven to be successful?
Any other children that have also this condition? Thanks