note to the neurologist

december 16, 2011

dear dr. thiele,

calvin went 47 days without an observed seizure and then had a tonic-clonic in the bath the other night. it was identical to his previous one (also in the tub) in that it was two and a half to three minutes long, as usual, but was far less convulsive compared to the seizures he used to have before starting keppra. but it was scary—relatively silent with significant cyanosis.

in light of going 23 days after having started keppra (he had been having weekly seizures prior to that) then increasing his keppra dose to its current 500 mg b.i.d. and going 47 days, i am wondering if it makes sense to increase his keppra dose again to see if we can nip them in the bud once and for all.

my concern is that calvin has a long history of continuing to increase and/or add on drugs to his regimen without ever gaining complete seizure freedom. thus, he ends up pretty drugged up while still having seizures. i am wondering, at about 39 pounds, what increasing his keppra dose might achieve. please advise.

calvin's appetite continues to be spotty, although we may have stabilized his weight a bit. i wonder, if we do increase calvin's keppra, might we also be able to decrease his banzel?

side effects we've seen while on his three AEDs:

clobazam = significant drooling, insomnia, hyperactivity, dizziness, good control of seizure clusters (current dose 15 mg b.i.d.)
banzel = cognitive brightness, better muscle tone and strength, hyperactivity, possible headache, no measurable seizure control beyond initial doses of 200 to 300 mg b.i.d. (current dose 400 mg/600 mg)
keppra = good seizure control, asthenia, some somnolence, loss of muscle tone, gait disturbances, dizziness, less hyper, possible headache, insomnia, significant lack of appetite (never saw this with highest dose of banzel) 5% weight loss (current dose 500 mg b.i.d.)

thank you so much for your valued input.


photo by Michael Kolster

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