So as we've been weaning off Vigabatrin I've noticed a couple weird things...
Trevy's seizures are more often looking like one-sided arm jerk spasms that we noticed last September. As opposed to those nasty rip your heart out both arms above the head spasms. It's a mix of the two...
It's the weirdest thing...but recently right before a cluster it's like the curtain parts. And Trevor has a sudden burst of clarity. His speech & cognition explode. It's very odd. And I can't quite figure out how to even convey what we're experiencing. It's just like everything gets sharp before the storm strikes. And for a few minutes we're in awe. Then the cluster comes.
Trev used to roll with the punches. He'd have a cluster. It would pass. And he'd be jumping around the room again. Lately...he has a cluster. And after it passes he's very sleepy. Post-ictal. Sometimes he'll actually fall to sleep. Curled up on the floor (or me) with his bink & blankie. I'd be lying if I told you I was okay. It freaks me out that the seizures seem to be affecting him more.
Trevy's seizures are more often looking like one-sided arm jerk spasms that we noticed last September. As opposed to those nasty rip your heart out both arms above the head spasms. It's a mix of the two...
It's the weirdest thing...but recently right before a cluster it's like the curtain parts. And Trevor has a sudden burst of clarity. His speech & cognition explode. It's very odd. And I can't quite figure out how to even convey what we're experiencing. It's just like everything gets sharp before the storm strikes. And for a few minutes we're in awe. Then the cluster comes.
Trev used to roll with the punches. He'd have a cluster. It would pass. And he'd be jumping around the room again. Lately...he has a cluster. And after it passes he's very sleepy. Post-ictal. Sometimes he'll actually fall to sleep. Curled up on the floor (or me) with his bink & blankie. I'd be lying if I told you I was okay. It freaks me out that the seizures seem to be affecting him more.
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It seems like ever since Kay has been off the heavy duty stuff, she's been bursting with development. Sharper than she ever has been. Do you think it's just less of the mind numbing drugs? It makes me wonder if these kids wouldn't be total brainiacs with out meds.
Give him big hugs for us.