Even though we know we are still destined to try Keppra, we are making sure that we given mono therapy every possible chance first. So, we increased his Felbatol dose to 12mg on April 21. I know I've said it before, but I do believe this is the highest he can go on this drug.
It's so hard to say if it is working or not. He does not have nearly as many of the longer seizures as he was having, but he does continue to have daily small seizures.
John's behavior has gotten quite bad, and this could also be from the high dose of Felbatol. Who knows? If he gets frustrated these days, he will usually start tipping over furniture or throwing things. He also pinches a lot, and will sometimes just run up and attack you. He also spits all the time now, and pees in inappropriate places (i.e. outside at the park). We want to stop all of these behaviors before they get out of hand, but we're not having much success yet.
The 2 longer seizures that have happened in the last month were also different than we've seen before. At preschool, they say he made a strange sound for 30 seconds while his eyes were fluttering. We've never seen him make any sound during a seizure. The other time he appeared to just be sitting down, and Yoshie realized that he'd been sitting for awhile and when she got to him, he was out and his lips were bluish like he hadn't been breathing. He didn't show any obvious signs that he was having a seizure, though. You wouldn't even know unless you were looking at his face.
We've also continued experimenting with the Chinese herbs. Sometimes he seems to improve after changing the formula, but we still haven't found the magic potion yet. The herbalist remains very caring, thoughtful, and optimistic, which is refreshing.
In the past month, we also tried a new speech therapist that was closer to our house. She thought John needed OT before speech. We've heard this before, and we've heard the opposite. We think he needs speech, so this new place might not work out.
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