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

The never-ending roller-coaster ride continues on. John had a couple of good days. He went almost 2 full days without a big seizure (though still lots of minor ones). Then he had a big one again yesterday. I just don't know how big, as I missed it. He was crouched down getting some balls from under the sofa as he often does. It was quite awhile before it occured to me that he hadn't moved in some time. He was not seizuring when I got to him, but he must have just finished, as he was still limp and completely exhausted. He slept for an hour, breathing very deeply the whole time. Then, he had another tough hour after that before recovering and being back to his old self in time for Maya's 8th birthday party! His big seizure was at 1:30pm, and we only saw one other very minor seizure the rest of the day. So, as usual, he seems to release the same amount of seizure energy in any given day, whether it comes in lots of small seizures or just one big one.
We have an appt. with the doctor tomorrow to discuss where we go from here. The options are 1) increase the felbatol, 2) increase the VNS settings, 3) add some Lamictal back in, or 4) start a new drug. I think we'll suggest #1 if we can do it safely, then #2. I'm not sure we're ready to reintroduce the Lamictal, but we may end up having to do that in the end.

He's also starting music therapy this week. I think he'll enjoy that.

We're going to slowly start dropping the herbs and the dietary restrictions, one bit at a time. They haven't proven to be beneficial, at least as far as we can tell. Just how we do this will be dictated by what happens at the doctor appt. tomorrow. We are trying to do one thing at a time, so we know definately what the culprit is if something happens.

John had a seizure of over 1 minute on Friday, along with his normal couple dozen of small seizures. That was the longest we'd seen in a long, long time. Over the weekend, he also had 3 seizures of around 10 seconds in length. So, that obviously isn't good. But, the overall number of seizures has gone down to about 15 per day. And, his afternoons and evenings have been really great. We think he is understanding more and more. So, longer seizures, but likely better development. Good trade-off or bad? That depends on when you ask me!

We had a meeting with his EI teachers today. He isn't crying at all at EI anymore, which is just great. He also isn't learning anything, and those meetings often seem overly depressing. But, the fact that he goes there without crying and seems to enjoy it is a huge improvement as far as I am concerned. He is keeping his 1 on 1 aide, which is good news of course. John had a 5 second seizure during the meeting. I think it was a bit of a shock to the teachers, as they had only heard of the longer seizures and haven't had to experience one yet. All discussion stopped and we had to revisit what to do in the classroom if he should have a long seizure. I'm really glad they got to see one, even if it was a minor one.

John has been at 1000mg of Felbatol for 10 days now. The general range for kids and Felbatol is 15-45mg per kilogram. John is 16kg, so this would mean his range is 240mg - 720mg. So, he is already way above the normal maintenance dose. But, we don't see much in the way of side-effects, so I wouldn't be too surprised if we end up going higher still. We'll find out at our appt. next week.

I mentioned that I caught a video of John having a seizure. It isn't that pleasant to watch, but I thought I'd post it so I can get the opinions of others familiar with seizures. This seizure seems mild, with almost no convulsing. He doesn't even drop his spoon. He even blinks during the seizure. Does this still look like a generalized seizure? It probably is, but it just seems different than the long seizures he used to have. The video can be found here (6mb).

John is now on his maximum dose of Felbatol, and he's still having many smaller seizures and some bigger ones. He was having a large seizure every morning, so I followed him around with a video camera on Dec. 31, hoping to capture a seizure so we could show the neurologist. After about 20 minutes, he sat down to eat and I turned off the camera. In that very instant, he went in to a seizure. I quickly turned on the camera and got the last 20 seconds or so of the seizure, but this one was about 35 seconds which is the longest we've seen for awhile. After that, he went 2 full days without a longer seizure so we were really hopeful that the Felbatol was finally working. However, he did have another one last night and a couple today. These were more of the 10 second variety, but still frustrating. I guess the Felbatol is not going to be the answer. I don't really know where we go from here, but we have an appt. in a couple of weeks so we'll find out then.
Everyone is back to school and work. John did OK his first day back, but did have a lot of "head drops", and we know they don't catch everything. I don't know if he'll lose his 1 on 1 aide soon, but we certainly hope not. Our meeting with the EI team before the holidays got canceled, so we'll be meeting again to discuss.