Felbatol, helmet, etc.

John has been on Felbatol for 1 week now. Based on seizure count alone, he has done progressively worse this week, culminating with 76 seizures today (including one cluster of 30 seizures). However, we think he's doing better cognitively. Maybe the Felbatol is doing something to the background activity, or maybe all of the supplements he is taking are actually doing something. So far, the only side effect of the Felbatol that we've seen is that it is harder to get him to sleep. Hopefully, that will wear off after awhile. We are doubling his dose starting tomorrow. The next few days will be interesting.
We finally got John's helmet on Thursday. I can't believe it took that long. We were told 2-3 days, and it ended up taking over a month. We didn't really care, as we were pretty sure John wouldn't wear it. And, sure enough he didn't want to have anything to do with that helmet at first. I don't know what Yoshie did while I was at work on Friday, but when I came home, John was happily wearing his helmet! And, he's had no problem wearing it most of the day today. He's enjoying his new freedom. We've had to hold him by a leash for months. We still have to keep a close eye on him, but we feel safe as long as we're in the same room. I saw at least 2 seizures today were he landed directly on the top of his head and didn't seem to get phased at all, so I think the helmet is doing it's job.


It also turns out that John was running a bit of a fever the last couple of days. He was fine in the morning, but by dinner time his temperature climbed to 100F both Friday and Saturday. I think he felt a little better after a little Tylenol. Hopefully he doesn't have this nasty cold that Yoshie has.

We saw the chiropractic neurologist on Thursday, and he did another neck adjustment. John continues to enjoy this, but it hasn't had any effect on his seizures. We saw the naturopath again, and he wanted us to increase John's P-5-P, change his l-tyrosine to acetyl tyrosine, and add one more amino acid. He also ordered an organic acid test that we can do at home.

Finally, due to an insurance change at my work that takes effect Apr. 1, we had to reschedule John's VNS surgery to Mar. 28. We didn't want to do this, but it just turned out that way. In some ways, we're happy with this, as I think we'll know if the Felbatol is working by then. If not, there is no reason to delay the surgery. Plus, 4/4 is sort of a bad luck day for Japanese, as the word for 4 (shi) also means death.

Felbatol

John's cold is better, and we're still not seeing any improved seizure control, so we made the gut-wrenching decision to start him on Felbatol last night. It should only take 3 weeks to get to the therapeutic dose, so we should know quickly if it is going to work or not.
We've spent the last 5 months trying to get rid of the drugs, so it was pretty tough to introduce a new drug at this point. But, we need to stop these seizures at all costs.
Felbatol is a scary drug, but I did an awful lot of research on it. I believe that this drug has the best chance of working for him, and potential benefits outweigh the risk.

The diet continues

Since we really haven't seen any improvement on the diet at the 4:1 ratio, we made the tough decision on Sunday to start weaning the diet, and start with the Felbatol. This was around 1pm. As is usually the case with these things, as soon as we were happy with our decision, something happened to change it. In this case, it was John's suddenly good mood and lack of seizures. He seemed to be doing very well, so I took his ketone reading at 3:45. It was 5.4, which is the highest we've seen in a long time. He continued to do well all afternoon. I took his ketone level again at 6:30pm and it was 5.8! He ended up with only 35 seizures for the day, and only 9 after noon. Finally at 10:30pm his ketone level was 6+ (the monitor only goes up to 6). So, he had a great afternoon, and his ketones were higher than we've ever seen. It might be coincidence, but it also could mean that he just needs really high ketones. In any case, we saw a glimmer of hope, and we just couldn't start weaning the diet after that.
We were really hoping his high ketone reading would continue on Monday. Of course, right on schedule, he got a cold overnight and woke up with a runny nose on Monday. This means high glucose, low ketones, and lots of seizures. I guess we'll now have to wait until his cold is over to make any further decisions about this. I consulted with the dietician today and she agreed that we really need to test this high ketone thing before we do anything else.

4:1 ratio

We are now 2 weeks in to a 4:1 ratio. We haven't seen any change with the seizures, but we also haven't seen his blood ketone level go up above 4.5. We expected it to go to 6+ after a couple of days. I'm not sure what is up with that. His glucose has gone down to the mid to upper 60's, which is right where we'd expect it. He might actually be sick, even though he doesn't have a fever. He had an awful lot of seizures early this morning, then threw up a couple of times. He has little spots on his belly. And, he took the longest nap of his life today - 4 hours.
Yesterday, he only had 39 seizures, and that includes 10 seizures that happened at 12:30am. So really, yesterday was probably the best day we've seen in a long time.
Still no word on his helmet. I guess we'll have to give them a call. He absolutely hates the loaner helmet they gave us, so I'm not that anxious to get the new one - as I know he won't wear it anyway.
Today is a Saturday, and I actually got an e-mail from his new naturopathic doctor with his personal cell phone number. We've never had anyone take an interest like this in John. I spent a couple of hours today organizing all of John's lab results and entering them into a spreadsheet. I then sent this spreadsheet to the doctor, as well as faxing the lab results to his clinic. I went over the numbers again and I really don't think there is anything in there that will give him any clues, but who knows.
We're at a real decision point right now. We want to try felbatol before getting the VNS. And the VNS surgery is set for April 4. So, we need to start taking that soon. But, we don't want to start a drug at the same time we're fooling with the diet. So, we need to come up with a good schedule next week. We'll either start the drug while still on the diet, then wean the diet later, or do a quick wean of the diet then start the drug.

New doctor

Well, all of the entries prior to this one were written after the fact. From here on out, I'll try to post on a regular basis so the info is current.
John went back to the chiropractic neurologist today for a quick adjustment. His plan is to slowly work his way up to John's neck. If that doesn't help, then he says he probably won't be able to help. Still John loves going there, so I'm certainly glad we're trying it. We also decided to see the naturopathic doctor in the same clinic. He is very well known, and has written 14 books, 100+ articles, etc. It was very refreshing to talk to him, as he was really interested in John's situation. He took a look at the labs that we had and gave us a bunch of stuff to start. We now give John:
Calcium: 300mg twice a day
Mag: 500 mg at lunch
Zinc: 20mg at lunch
multivitamin: anytime
P-5-P: 50mg/day anytime
l-tyrosine: 100mg twice/day away from food
fish oil: 1 tsp/day
l-carnosine: 200mg/day
carnitine: 485mg/day, spread out throughout the day.

That's a lot of stuff for a "drug-free" kid! We had to make a chart and buy a fancy pill holder just to keep it all straight.