we took jameson to his follow up appointment with his neurologist on september 26th. (yes, i know that was almost 3 weeks ago.) because it's been 2 years and he's been seizure free and because his recent EEG came back clean, she said it was ok for us to begin to wean him from his medication.
this is both wonderful and terrifying at the same time. i'll be so relieved if he can go through the rest of his life without medication - and the troubles/trials that go along with having seizures. at the same time, i'm terrified that we'll see a seizure. even if they're the very non-violent ones he had before, it's still sickening to think that we might see that again. scary. and, of course, "dr. sprinkles" tells us that the seizures, should they resurface, may not be the same kind (myoclonic) that he suffered before. if he has one, it COULD be a grand mal. it could be a bad one. that scares the beejeebers out of me. we have emergency medicine should it happen, but still.
so, on 9-26, we began the weaning. he was taking 5 tablets per day - 2 in the morning, 3 at night. he's already down to 1 in the morning, 1 at night. so far, so good. but, i'm holding my breath.
and, it seems that we're having another sort of side effect. one of the side effects of the drug he is/was on is that it made him tired. we didn't really know HOW tired until we started weaning. he is becoming a very energetic, strong-willed, dare-i-say naughty little boy. gah. it might just be circumstance and this might just be a phase he'd have hit anyway. but, quite the coincidence anyway.
and, so. as of this friday, the 17th, we'll have one more week to go before he's off all dosing. wish us luck!
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