My 12-year-old started Zarontin on Friday morning for juvenile absence epilepsy, so he just finished day 5 of beginning meds. The plan is 10 days of a once-daily dose (a.m.), then begin twice-daily. I know it is VERY early in the process, and it takes time for the meds to build up to a steady state, never mind he's not even at full dose yet.
The thing is, it might be tough to know for sure if it's working, because as it is we've only ever observed a few obvious absence seizures over the past few months. The last one that we knew of for sure was when someone else observed one 12 days ago. We hadn't see once since. Of course, it doesn't mean he hasn't had others that no one saw. He said he doesn't think so, and honestly he usually is aware when he had one (although I'm not sure if that's only because of people's reactions).
Last night he might have had another, but it's hard to tell. I was quizzing him for a particularly tough definitions test. When I gave a definition for one word that he didn't remember, he was trying to think of the answer, and then it might have happened. It was a bit harder than usual to tell. The episode seemed even shorter than usual ones (others were maybe 5-7 seconds tops), and the “entry/exit” points were less distinct in that I couldn't tell exactly when it started and stopped. In fact, I wasn't even sure if he was just thinking or zoned out. He didn't look as out of it as usual. I asked hi about it, and he did think it was a “zone out.” When asked if he heard me (I'd been repeating the definition in a different way), he said yes but said he usually does hear people through a sort of fog (I didn’t know that). So I was bummed he might have had one because I personally hadn't seen him have one in so long even before he started the meds. Anyway, it seemed milder, but I don't know if milder is possible.
Then there's today. This afternoon he had a more clear-cut absence seizure. Very clear when he stopped talking mid-sentence, didn't respond for several seconds, then "came back" and was momentarily confused as if he'd lost his train of thought. It might even have been a bit longer than any previous ones we'd seen but it's hard to tell.
I've never seen him have an absence seizure two days in a row. Doesn't mean he hasn't had them. But I've never seen that. As I mentioned, I hadn't even seen one in a couple of weeks, with the last known one before his diagnosis being about almost two weeks ago.
As I said, I know it's way too early and way too low a dose for me to be expecting results. But it's also disheartening to see more episodes than before he started the meds. Even though I know he might have been having more without our knowledge.
I just, so badly, want this medication to work. I know that's stating the obvious.
The thing is, it might be tough to know for sure if it's working, because as it is we've only ever observed a few obvious absence seizures over the past few months. The last one that we knew of for sure was when someone else observed one 12 days ago. We hadn't see once since. Of course, it doesn't mean he hasn't had others that no one saw. He said he doesn't think so, and honestly he usually is aware when he had one (although I'm not sure if that's only because of people's reactions).
Last night he might have had another, but it's hard to tell. I was quizzing him for a particularly tough definitions test. When I gave a definition for one word that he didn't remember, he was trying to think of the answer, and then it might have happened. It was a bit harder than usual to tell. The episode seemed even shorter than usual ones (others were maybe 5-7 seconds tops), and the “entry/exit” points were less distinct in that I couldn't tell exactly when it started and stopped. In fact, I wasn't even sure if he was just thinking or zoned out. He didn't look as out of it as usual. I asked hi about it, and he did think it was a “zone out.” When asked if he heard me (I'd been repeating the definition in a different way), he said yes but said he usually does hear people through a sort of fog (I didn’t know that). So I was bummed he might have had one because I personally hadn't seen him have one in so long even before he started the meds. Anyway, it seemed milder, but I don't know if milder is possible.
Then there's today. This afternoon he had a more clear-cut absence seizure. Very clear when he stopped talking mid-sentence, didn't respond for several seconds, then "came back" and was momentarily confused as if he'd lost his train of thought. It might even have been a bit longer than any previous ones we'd seen but it's hard to tell.
I've never seen him have an absence seizure two days in a row. Doesn't mean he hasn't had them. But I've never seen that. As I mentioned, I hadn't even seen one in a couple of weeks, with the last known one before his diagnosis being about almost two weeks ago.
As I said, I know it's way too early and way too low a dose for me to be expecting results. But it's also disheartening to see more episodes than before he started the meds. Even though I know he might have been having more without our knowledge.
I just, so badly, want this medication to work. I know that's stating the obvious.
Unfortunately, there can be an aspect of trial and error with medications. Fortunately, there are a lot of meds out there to try.