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
