More Lamictal

Upping the ampage of the VNS didn't seem to do anything, so our next step is to try to increase the Lamictal again. Today, we gave John 87.5mg, up from the 75mg that he's been on for quite awhile. Hopefully we'll see some improvement with the seizures, and no new side-effects. I truly hate to give him more meds, as he is doing pretty good right now. But, we need to keep pressing to get him completely seizure free so that his brain has a chance to heal. I'll update again soon.

On a side note, I was filling in his weekly pill box from a new prescription when I noticed that there were 2 different types of pills in the container. They were both white and almost the same size, but a slightly different shape. Kind of scary that a pharmacy would make a mistake like that. As it turned out, they were both 25mg Lamictal tablets. One was chewable (correct) and one was the non-chewable. So, it probably wouldn't be a big deal if John had taken it. He probably would have spit it out, though. The pharmacy was extremely apologetic.

VNS upped again

We saw the neurologist again yesterday. We knew going in exactly what our choices were, so it was no surprise. John had his VNS ampage turned up to 1.75mA, just as we'd expected. It sure would be nice if I could just program that thing at home. We didn't do anything with the on/off durations. Our other option was to increase the Lamictal. That of course is scary, since the increased Lamictal was a disaster before. But, maybe it needs to be a little higher now to work its magic in conjuction with the VNS. Even our neurologist admitted that this is nothing more than a big guessing game.
So, we'll give the VNS a week or two at this setting to see what happens. If there is no improvement, then we'll slowly increase the Lamictal. If that doesn't work, we'll have to do some more research. Our neurologist agreed that we can't give up until we have complete seizure freedom. He was not happy with "settling" for these minor seizures. Our neurologist has to be given huge credit for all he's done for John, and I feel very lucky that we just happened to end up with him due to insurance issues early on. However, he wanted us to research 3 more drugs to potentially try in the future, which left me sort of unsure of his guidance:

1. Felbatol - He mentions this one every time, even though he already had us try this one months ago. arrgh. It caused John to vomit many times per day and did nothing for his seizures.
2. Vigabatrin - It was only 6 months ago that this same Dr. told us that Vigabatrin should not be given to John, as it often will make John's type of seizures worse. I told him (again!) that we still think there is a good possibility that John has MAE (Doose Syndrome), and Vigabatrin is about the worst thing you can do for MAE. He never comments on this, and I suspect he's never had a patient with MAE. Vigabatrin also has a high incidence of causing a permanent narrowing of your field of vision - thus the reason the FDA has not approved it.
3. Clobazam - It's a benzo, and everything I've learned over the last year makes me believe that benzodiazapenes should never be used for anything other than short term relief. I think most neurologists would now agree with that.

So, after the Lamictal trial, we'll have to do some more research, as the 3 options given to us aren't promising at all. Yoshie and I agree that Zonegran is the logical next drug trial, and then Keppra. Also, another trial with the keto diet might be a good idea, since his seizures have changed. Another alternative is the "specific carbs diet", popular in the autism community. But, I'm getting ahead of myself. Hopefully this increase in the VNS ampage will do the trick. It's been a little over a day since it has been changed, and we haven't seen any improvement yet, but it's far too early to say that it won't help.

The good news this week is that John appears to be progressing with his speech. Over the last 2 days, he has occasionally repeated words to us which is a great sign. He's said 5 or 6 new words just in the last couple of days, and I get the feeling he is starting to understand that speaking can help him get what he wants. He's also started grabbing our hand and leading us to whatever he wants. He's never done that before and I think it is a good sign. Last night at Costco, he pointed to a cake and said, "Cake", completely unprovoked. I was stunned. I've taught him that word a hundred times but he's never repeated it. Of course he wouldn't say it again. Yoshie started giving him l-carnosine again about a week ago, and this might be what is helping him. Or maybe he's just feeling better. Yoshie has also found a new speech therapist that was recommended by her friend. This lady has a great reputation (and a long waiting list!). She was familiar with epilepsy and her brother even has a VNS. Sounds like a good fit. She can only fit us in 1 hour a month right now, but said we could videotape the session and practice the techniques ourselves. We're dropping the other private therapy for a number of reasons that I won't go in to.

Oh yeah, Maya also found a 4 leaf clover yesterday. Since this was the same day that his VNS was adjusted, we think it is a good sign. :)

no change

John's condition hasn't changed in the last couple of weeks, so we are going back to see the neurologist later this week. He's doing great, but we'll keep adjusting things until he's completely seizure-free.
Yoshie took John to the morning ESD class yesterday. That turned out to be far too advanced for him. Niether of the classes he's been to have been right for him - they've either been too advanced, or too slow. There isn't a "middle" class, so Yoshie talked to the teacher about trying to get more personalized therapy. Hopefully that will work out, though it appears that it isn't that easy to just change things once the IEP is written.
So far private therapy hasn't worked out, either. We'll keep trying.

back to 75mg Lamictal

John didn't respond at all to the last little bit of Lamictal we gave him, so we raised his level again to 75mg/day 5 days ago. It doesn't seem to be helping. If anything, his seizures are getting slightly worse and more frequent, though nothing bad at all. I think we need to give him another week at this level and hope things start to get a little better. If not, then we'll have to go see the neurologist again. I'd like to get another EEG done to see if anything has changed, but I doubt he'll be willing to do that. He'll probably opt to change the VNS settings.
I think John might be slowly progressing, which we are happy about. Certainly, he's not picking things up quickly like we hoped, but any progression is good news. I think he is starting to understand more, and he's attempting to say some more words. Everyone tells us that he looks better, so its probably true. I guess it's hard for Yoshie and I to tell since we are with him all the time.