We did increase John's Felbatol right after my last post. He is currently at 660mg/day, which is right near his maximum limit. He's been at that dose for 2 weeks now, and we haven't seen any noticeable improvement. He's still having a dozen seizures a day that we see.
He went in today to get a blood draw to determine his Felbatol and Lamictal levels, and to make sure everything else is OK. Normally with Felbatol, you have to get blood tests done every week or two. I think the doctors overlooked this, as we had to ask for this test. There still is no mention of ongoing blood tests, so maybe he was just waiting to see if it was going to work before setting up our routine blood tests.
Since we have to wait to get the blood test results back before doing anything with the Felbatol, we thought we'd take this opportunity to lower his Lamictal a bit. So, we took out half a pill at night, which leaves him at 87.5mg/day. I suspect the doctor will want to quickly get rid of the Felbatol and start a new drug, but I hate leaving John on the Lamictal when it doesn't seem to help him. So, we'll keep taking little bits out when we can. We always try to avoid doing more than 1 thing at a time, and we never make more than one doseage change of any med in a 2 week period. So, it's a long process.
We never really had much hope for the Felbatol, but it is one of the "big guns" in the seizure world, so we don't expect anything to work now. We certainly will keep on trying, but with each medicine comes less and less hope. That doesn't mean we're done fighting, though. We just made an appointment with the naturalpath that we saw last year. And, we're meeting with a well known accupuncturist/chinese doctor this weekend. We're not looking for cures at this point, but if either of these alternative doctors can help John to sleep better or releive his stomach issues, I think the end result will be less seizures.
John continues to learn new things. He actually understands what "more" means now, and can use it in 2 word sentences if he wants something - "more bagel", or "more cookie". We're trying to focus on English with John, but tonight he came to me, pointed at his hand and said "Koko itai", which is Japanese for "It hurts right here". I think that is it for his ability to use 2 words together right now. But, it's still a big improvement.
