We increased John's Lamictal to 10mg a few days ago, and this seems to have further aggravated his sleep problems. He routinely wakes up during the night now. Last night was the worst - he was up from 12:15am to 4:30am. He cries a good portion of this time, and it's just miserable for all of us. Amazingly, he seems well rested after waking up just a few hours later. The same cannot be said for us parents. If this drug is causing these sorts of sleep problems at 10mg, I wonder what it is going to do at 100+mg? In fact, John can theoretically go up to 290mg/day. Often the side effects wear off after awhile. Obviously we're hoping for that.
Friday and Saturday were pretty good seizure days, then Sunday turned out to be really terrible (37 clusters). Yesterday (Mon) was better again. We've quit giving him most of the supplements, including the prescription carnitor. We've always suspected that this made him worse. His carnitine blood levels were low, but he doesn't show any signs of carnitine deficiency, so we're holding off for now. With his lower diet ratio, hopefully he just doesn't need the carnitine anymore.
The 2:1 diet ratio and increased calories have caused his glucose to go up slightly (now in the 70's). However, his ketones remain sky high (5+). In fact, I'm beginning to wonder if his high ketones are contributing to his waking up at night. It doesn't make any sense that he should have such high ketones on a 2:1 ratio. He really is a mystery.
Yoshie sewed a piece of foam onto one of his shirts to protect his VNS area. Seems to be working great so far. The incisions look better each day. He's still taking Tylenol every 5 hours, but we've lowered his dose somewhat.
Even though he was wearing his helmet, he managed to fall right on his forehead on the small exposed tile area of our kitchen. So, he has yet another bruise on his forehead.
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