It used to seem that every Friday was a bad day for John. We never did know why, but it happened enough times that we came to expect bad days on Fridays. Over the last several weeks, this pattern didn't hold true - John was having just normal days on Fridays. Well, the Friday curse returned with a vengeance last Friday. John had 58 seizure episodes, which is 20% more than his previous worst day. And, he was having those mouth-opening seizures for long periods throughout the entire day. He woke up at 5am, and didn't get to sleep until 11pm, but took a 4 hour nap during the day. He had a good 2 hours in the early evening where he got back on his normal schedule of 1 seizure every 20-30 minutes or so. But, the rest of the day seemed like almost non-stop seizures. We came very close to using our emergency drug (Diastat), but held back because John was NOT suffering. Outside of the constant seizures, he was fine.
Saturday, was a little better, though still bad. In this state, we decided not to increase his Lamictal just yet. Sunday was better again, so we gave him an extra 12.5mg of Lamictal at night. As of Monday, he's on 125mg/day. (9.6mg/kg, therapeutic is 5-15).
Monday was another pretty bad day (40 seizure episodes), with some very strong extended seizures.
So, it doesn't look good for the Lamictal. We could certainly go higher on the dose, but I don't think there is much point since I don't think we've seen any improvement at the current level. We'll give it at least a few more days to build up in his system, then if there isn't some real improvement I think it's time to push to get rid of it. I'm not sure what the next step is. Lamictal can be a tough one to wean, so I guess we have a couple of months of that ahead of us. I suspect the Dr. will want to add another drug as we wean down on the Lamictal.
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