Things haven't changed much since the last time I updated. He continues to sleep poorly. He was up in the middle of the night 5 of the last 7 nights. He's usually up for 2-3 hours at a stretch, sometime between 12am -4am. It can be very frustrating in the middle of the night when he refuses to sleep. Yoshie handles it better than I do. :)
He is still having more seizure clusters than ever. Actually, his total number of seizures isn't that high, but he has a drop roughly every 15-20 minutes all day. I don't think the VNS has helped at all. Last week he had 222 clusters and 332 seizures. I guess that is a substantial improvement over the week before (252/457), so maybe he is getting slightly better. It sure doesn't feel like it, though. This week has started very poorly, so I don't think this downward trend will continue.
He's on 30mg of Lamictal per day now. We didn't see any improvement after increasing his doseage, but we also haven't seen any side-effects (except for the sleep thing). So, I think that is good news. He's still only at about 50% of his minimum therapeutic dose, so we shouldn't expect too much just yet.
He also had his VNS turned up pretty substantially today. He's now at .75mA, on for 30 seconds, off for 66 seconds. The magnet is set to 1mA. He had a bad day today, so that obviously isn't helping yet. Hopefully, it will get better with time.
Finally, we went down to a 1:1 diet ratio a couple of days ago. He can almost eat anything he wants now, outside of bread, pasta, rice, cereal, etc. We're going to bring him completely off of the diet over the course of this week. We're prepared to go back on it at any time, though. It appears to be the only thing that may have helped him - and we're only mildly confident in saying that.
My parents joined John, Yoshie, and I on a 5K fundraiser walk for the NW Epilepsy foundation on Saturday. Of course it rained, but it wasn't too bad. It was lightly attended, but I think they still raised at least $7K. Of course, we forgot to bring a camera. :(
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