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Letter From Alex's Mom, Karen
January 2002
Alex is doing okay. We're still having problems keeping the seizures under
control. He usually has about 4-8 a day, some days are good and we only see
2 but some days are bad and we see lots more than 8. On the bad days he has
clusters of them, and on 3 different occasions they kept coming for 30+
minutes, and we ended up giving rectal valium. They are really mild
seizures, although they do appear to be more pronounced. He usually
turns his head to the left and stares, his right hand may or may not twitch,
and he usually blinks and has a silly grin on his face. More often than
not, he makes happy noises, like squeals when they happen. Then, less than
30 seconds after the staring, he starts in with chin thrusts. With each
chin thrust he loses muscle tone and awareness, but it's really short each
time...like 1 or 2 seconds of lost muscle tone. But the chin thrusts can
last up to several minutes. He seems normal in between them, and gets
frustrated when these happen. The longer it goes on, the less noticeable
they become and the less tone he loses, until finally they're gone....kinda
like hiccups...they hit him hard at first then taper off.
He's on Tegretol
3 times a day (which worked in the beginning, and we weaned him off the
Phenobarb) but when the seizures started back up, and he had a cluster of
them that required a trip to the ER for the rectal valium, the neurologist
added in Klonopin 2 and then finally 3 times a day, which frankly has never
seemed to work well. We are probably going to be adding Lamictal or some
other one (don't know the name offhand, been used in Japan). I'm always so
nervous about starting new drugs...of the side effects. But so hopeful
too...keep thinking maybe this will be the one that works for him.
But on to other news! :) Alex is almost 7 months old now (where DOES the
time go??? Besides waiting in doctors' offices, Alex is cute as ever. He
loves to screech as loud as he can, and just got over his obsession with his
tongue (it was ALWAYS sticking out!). He's in the middle of teething,
drooling all over and biting his hands like a madman. I see the two bottom
ones under the gums, and his top front gums seem more swollen (poor guy,
let's hope he doesn't get 4 all at once!!). He's trying hard to sit
up...loves sitting in people's laps, but can't quite do it on his own yet on
the floor. He tries to fling himself backwards....not too conductive to
sitting! :) He's really enjoying his baby food. We're on to the stage 2
foods, and he loved the tiny taste of grown-up mashed potatoes and gravy he
got for Thanksgiving. He tried feeding himself with the spoon last night
and made a HUGE mess, but we sure had fun!
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