Keppra?

We got a little snow around here last week, and the appointment that we had waited months for was canceled. Thankfully, we were able to reschedule quickly. But, in the meantime John had a pretty rough time. He has a long seizure almost every morning now, and sometimes has a 2nd one in the early afternoon. We've seen several over a minute now. These wipe him out for a long time. He sleeps for an hour or two, and then is just in a bad mood for another hour or two. The flip side is that his smaller seizures are rapidly diminishing. In fact, he has only had a couple per day lately. And, every now and then he'll get a day without a big seizure and only a couple of small ones. It seems possible that he could see a seizure free day one of these days.

We were able to get in to see the nurse practitioner a couple of days ago. She wasn't very impressed with the video that we had. I guess she's seen her share of seizures. We were concerned about John turning a faint blue with his seizures these days and she just said that this was normal. She says we don't need to worry unless he turns VERY blue over his whole body.
We asked about the tropic acid levels, and she just snickered. She's obviously not a fan of alternative therapies. She tried to backtrack a little but it was obvious she wasn't interested in pursuing that.
We also asked if we could get another overnight EEG so we could catch one of these big seizures. She thought it was a good idea, but after consulting with our main neurologist, they decided it wasn't needed. I don't understand the reasoning, and I can't help but to think that they just didn't have a convenient opening. To me, it really feels like they don't know what else to do for John.
He got his VNS turned up again. It's now at 2.25mA, and the magnet is set at 2.75mA. It doesn't bother John, so I guess the only downside is that the battery will wear out a little faster. It's worth it for the chance at better control.
We talked about what to do next. She mentioned going back on Lamictal, but we told her we weren't real comfortable with that. So, we are giving the VNS a little time, and will increase his Felbatol if there is any room to go up. Along those line, she ordered the standard bloodwork that goes along with Felbatol.
The big positive that came out of the appt. was her apparent disbelief in the amount of speech therapy that John is receiving. Finally someone that sees it our way. I guess her other job is with the Child Development Rehabilitation Center, so she has a lot of experience with this. She says John needs a lot more speech therapy (duh!), and she got the ball rolling on that.

Today, we got the blood work done. John had a 75 second seizure on the way to the lab and woke up just in time to get poked. So, he didn't have a very good morning. Most of the results are already in and were all fine. We'll have to wait a couple of days before we get the Felbatol level.
In the meantime, she and our neurologist discussed drugs and they feel that keppra is the logical next trial. Yoshie and I have been looking at Keppra for a long time and also feel this is a good thing to try. It's famous for causing behavior issues in children, but there are some things we can do to combat that (B6, slow titration, etc.). We hate, hate, hate to introduce another drug, but these seizures are scary and we don't feel like we have much of a choice.
We'll wait to start until we've exhausted options with the Felbatol, but I'm fairly certain we'll be trying it soon.
Here are some positive studies regarding Keppra. I won't post the negative ones (mostly behavour issues).
PubMed1
PubMed2
PubMed3