Help my 15yo w/ unusual neurological/sleep problems

Beaman propack at dbtech.net
Sun Jun 15 17:33:58 EST 1997


My 15 yr old daughter has become increasingly debilitated & is having to 
give up all of her usual activities due to her symptoms.  She has 
improved some on current meds but still cannot go back to a reg. school 
or participate much w/ her peers.  Apparently has a sleep d/o w/ other 
unusual findings. Confusing & gradual onset. Current dx= static 
encephalopathy, rhythmic movement d/o of sleep w/ narcolepsy like 
episodes. Androgens also found to be high w/ heavy hair growth. Meds= 
Tegretol(1000mg/day), Dexadrine 15mgSRam & 5mg2pm, Klonapin 1 1/2 mg hs. 
Mod. improvement. She is currently having 8-10 episodes/day of extreme 
drowsiness w/ shaking/jerking/rigidity/weakness. Appr 1 episode per 2 
wks of sudden, deep sleep. Both are more frequent when she is sedentary 
or sleep deprived. Has had 2 monitored EEGs & sleep study. PET 
recommended by sleep dr but have not been able to schedule w/ an 
appropriate neurologist. She was quite depressed about all of this but 
this has cleared up with appropriate care. What she really needs now is 
hope of more improvement. She says she can get by for now but doesn't 
want to have to keep living like this!  Birdie





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