Sickness, Christmas

John has had a cold for the last week and, as usual, this brings on more seizures. It also really appears that there is a direct correlation between the amount (and quality) of sleep he gets and the number of seizures he has the next day. We consistently see that he has a good day when he sleeps well. It's kind of a catch 22, as his current drug causes sleep problems. I definitely think the drug is helping him, but it is also keeping him from having a good nights sleep, which is likely hurting him. So, we carry on with our adjustments, hoping we can find the sweet spot again where he can go seizure free.
John didn't do so well seizure-wise with all the extra activity that Christmas brings. As you'd expect, he got really excited and for him that means increased seizures. He's done much better in the couple of days after Christmas. He still doesn't understand presents or anything. Even new toys don't interest him at first, though he does seem to slowly take interest in his own time.
We tried to get a picture with Santa, but John won't ever stay still long enough to snap a picture so we ended up with a nice picture of Maya and Santa, with John trying to squirm away.
Yoshie's mother is coming to stay with us for a week beginning on Dec. 31. It will be interesting to see how John reacts to this. He seems to enjoy having others around so I think it will be good.

Increase in Lamictal

I really think John's seizures just get better and worse on a completely random basis. Things seem to change for no reason at all. John was really doing pretty well for a good week, then he started to get worse again this week. We hadn't changed his drug or diet or anything else that we can think of. He had some stronger head drops this week, and a couple of days of around 20 seizures. Also, earlier this week he was having seizures that would be followed by a couple of minutes of crying. It was like he suddenly was in a state of really deep sadness and it was hard for us to see. But, that only lasted a day or two. Our first thought was that things were getting stronger again. But, Yoshie thinks he just may be more aware now and so he realizes when something happens to him so its an appropriate reaction. Who knows.
He has had a slight fever, and Tylenol seems to actually decrease his seizure count. So, maybe he is just very fragile and that slight temperature is all it takes to put him over the edge.
I talked to the neurology nurse again, who got us an appt for Dec. 30. I'm not sure if he'll adjust the VNS again, or further increase the Lamictal. In the meantime, we increased his Lamictal another half a pill so he is now taking 137.5mg/day. Hopefully we'll see some improvement over the next week.
Last week, we also went to see the Washington County special services dept. to see what sort of aid we qualified for. The good news is that we qualified for financial aid for all sorts of services. The bad news is that the waiting list is 3 years. At least we're on the list now.
We still haven't been able to get a speech therapist to come over. We do have another appt. with the private therapist next month. Yoshie has been working hard on the techniques that we've learned for increasing his speech. He is definately getting better, but at his own sweet pace.

Still doing pretty well

We increased John's Lamictal to 125mg last Friday. It's been a week now, and I actually think he is doing a bit better. He still has a handful of seizures almost every day, but I think they are really getting smaller. It seems to me that he gets a little bit clearer each time we raise the Lamictal. I wonder if it may be calming his background activity.
We also started giving John fish oil again. We've heard time and time again how it can be beneficial, and many people give it to their kids as a supplement anyway. What made us do it was a small study that seemed to show that some kids actually had reduced seizures while taking Omega 3 supplements. It doesn't hurt anything, and John takes it fairly easily so we figured it couldn't hurt.

Up and Down

John continues to do quite well overall, but still seems to have good and bad days for no apparent reason. He's had a couple of days now where we didn't see any seizures at all, and other days where he's had a couple of stronger myoclonic head drops (one that actually bruised Yoshies face). You can tell that something still isn't quite right in his mind, though, as he can quickly go from being happy and playing to yelling or acting fearful of something for a short time. I think he's probably having subclinical seizures, though it could also be a side-effect of the Lamictal. We won't know for sure until we get another EEG. We'll probably try to schedule that for early next year.
We still haven't succeeded in getting John any speech therapy. We had both a private and County therapist scheduled to see him, but the private therapist is just too busy I guess, and the govt. supplied therapist is sick and won't be back until January. So, we keep plugging along trying to do the best we can. I don't really think there is any magic to speech therapy, and what we are doing is probably the same thing a therapist would do. Still, it would be nice to actually have a therapist confirm that.
This Thanksgiving is certainly better than last year. This year, he can join us at the table, which is great. Last year, he couldn't eat at the table because he was having such frequent seizures that he'd get hurt, and he was on the keto diet.

getting better again

Things stayed mostly the same for about a week after my last update. John got a little cold and subsequently had 1 bad day with 35 small seizures or more. Once he got over his cold, he returned to more normal days of 15-20 seizures. These seizures are really small, and I'm starting to think they are actually getting better with time.
Yoshie is working hard during the day to teach John some basic commands. He now understands "sit down", "No", "take a bath", "go", "nen-ne" (go to bed), "tabetai" (I want to eat), "bu bu" (go to car), "good", "more", and quite a few other things. He's definately making progress. He's also trying hard to say a few more words, though progress is slow. He's dancing again, and plays with Maya all the time.
We still haven't heard from the speech therapist. I guess I'll have to follow up with that. The occupational therapist came by for a short time, and she'll be available for consultation from now on. We're not worried at all about his motor skills, though, so I doubt we'll have much contact with her.
The really good news is that John only had one miniscule seizure all weekend! He started getting better on Friday, with only 4 seizures that we saw, then didn't have another one until Sunday evening. It almost feels like they are burning out, but we know enough not to get too optimistic. The interesting thing is that we didn't change anything. He's still on the same dose of Lamictal, we haven't touched the VNS in a long time, and we have been keeping his diet consistent. We really can't explain why he suddenly got better. We're hoping that it is simply the cumulative effect of the VNS.
The down side to this is that he isn't sleeping very well again. This happened the last time he had a seizure free stretch too. It lasted a couple weeks last time before he started sleeping soundly again. I can only imagine that he is feeling good and doesn't want to sleep. It's certainly a small price to pay. Just one short year ago, John was on a gluten and dairy free keto diet, severly constipated, on 3 drugs, and getting worse all the time. He was diagnosed with likely Lennox-Gastaut syndrome, and we were expecting further cognitive regression. I don't think anyone would have believed he would be this well off right now.

More Lamictal, Halloween, pre-school

A lot has happened since I last updated, though there has been no change in his seizures.
We had a meeting with his pre-school teachers and nurses to discuss our concerns about his pre-school environment. It went very well, and they agreed with everything we said. That was a big relief. So, for the next 3 months, we will be getting home therapy sessions in speech and general therapy. We'll also have one at-home session to go over occupational therapy issues and then the occupational therapist will be available for consultation on an ongoing basis. We'd like to get John back in preschool eventually, but not until we feel it is worthwhile. In the meantime, we're happy with this situation.

We increased John's lamictal dose to 112.5mg/day, starting on Monday. We really don't see any difference, good or bad. John does seem especially happy and attentive these days, and that could well be due to the lamictal. I guess we'll never know unless we get rid of it. Unless we see some negative effects, we'll continue to increase this drug until we get to the upper end of his therapeutic range (200mg/day). We still have a feeling this one might help him at a higher dose.

John enjoyed Halloween. He dressed as a furry green dragon, and went trick-or-treating at a couple of houses. At the first house we went to, he ran straight through the front door all the way to the kitchen area where some ladies were cleaning up. I had to run in after him. I think the house owners were amused. We had a party at Eric & Amy's house, and mostly John just enjoyed having all of the people around. Even though he doesn't talk, he definately loves the parties.

Still at 100mg Lamictal

John has been a little sick over the last week, so we have not attempted to change his doseage. We are still planning to go up another half a pill (12.5mg) sometime in the near future. He continues to have 5-20 small seizures every day, but he is doing fine and continues to learn at his own pace. He knows what it means to "take a bath" now. He'll run in to the bathroom if we say that. And, he has learned that he has to sit down in order for us to play his favorite video. He's dancing again, and can get quite animated when "playing" the piano. I think it's fair to say he is about back at the point he was when this all started. Hopefully he'll continue to move forward. And, we'll also hopefully be able to eliminate these last small seizures.
We have an IEP meeting tomorrow. We're going to push for home therapy, but if they refuse it's not the end of the world. We're already set up to start private therapy. Maybe he can go back to a preschool next year if he's doing well.

No change yet with Lamictal, CURE

John has been on 100mg of Lamictal for about 1 week now and so far we haven't seen any change, either good or bad. Since we're not seeing the side-effects like the last time at this dose, I think we're going to go up another 12.5mg this week.
We've been trying some new techniques recommended by our speech therapist, and they seem to be working. The progress is still slow, but he is definately understanding more than he used to. Hopefully, he will continue to improve.
We've given up on the preschool, and we are scheduling another meeting to talk about what our other options are. We would like some home therapy, but I don't know if they will go for that.

Since John is so much improved, I made the leap and signed up for another Ironman triathlon to take place next June. This time, I'm using a program that is associated with Ironman to raise money for a charity that I feel is very deserving.
The charity is called Citizens United for Research in Epilepsy (CURE).
My personal donation page is located here. I've also put the link above the picture on the right side of this page.

Lamictal not helping

John didn't improve at all with the Lamictal dose at 87.5. In fact, his daily seizure count is slowly increasing. I also think that some of his seizures are getting a bit stronger. Still, they aren't bad, but I don't want things to spiral out of control again. We increased his Lamictal to 100mg on Oct. 10. So far this increased dose isn't helping either. On Saturday, he only had 4 seizures and we thought things were getting better. Sunday was more of a normal day with 10-12 seizures. Yesterday was worse again with 15+ seizures. We also saw the seizures cluster again for the first time in months. It's hard to say if the Lamictal is hurting him, or if things just change randomly. He seems a bit better again today, so we'll wait this out. I don't think we'll go any higher on the Lamictal unless we see some improvement over the next couple of days.

We did see a new speech therapist who was optimistic about John's chances to learn to speak, which was nice to hear. We're probably going to attend a "workshop" with her, and then take on the therapy ourselves. She said we had to commit to 20+ hours/week of therapy, and she left it up to us if we wanted to do the therapy ourselves or hire a therapist. Of course we are willing to do it ourselves.

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.

A small setback

John seemed to do OK with the first Lamictal reduction, so we took out another quarter pill last Friday (8/19). Saturday night we thought we might have seen a small seizure. He confirmed it on Sunday with 10 or so small seizures. These seizures are nothing like before, and consist of just a very slight head nod followed by a few seconds of confusion. These could be withdrawal seizures, but it was hard to see John seize at all again after 2 months of seizure freedom. So, on Monday morning we added the 1/4 pill back in. Unfortunately the seizures have continued throughout the week, though I think they may be getting less frequent again. If he's still having seizures early next week, we'll raise his Lamictal again to the point where it was when he had the good seizure-free stretch (75mg). If that doesn't work, I guess maybe we'll try to get the VNS adjusted. It's disappointing for sure, but if you look at the big picture, things are still very good.

I took John to speech therapy last week, and his therapist decided that John was too delayed for speech therapy. She thought he needed more time. She said the best thing for him would be just lots of group play time, in a structured setting. He needs to first understand some of what we are saying to him before he can really learn to talk. So, we are dropping the speech therapy for now, and we'll try occupational therapy for awhile. Plus, he will start back up with his preschool soon.

Starting the Lamictal wean

First and foremost, John has remained seizure-free for 8 weeks now. We are still cautious of course, but mostly he can do whatever he wants now. His turn-around is almost unheard of, especially considering the severity of his condition. Our life has almost returned back to "normal", but we'll never take another normal day for granted for as long as we live. There are no guarantees that this will continue, and in fact I'd say it's probable that the seizures will return. But, I'm starting to believe that it IS possible that he will remain seizure free now. The VNS has proven to be exactly what he needed.

We took John for his speech therapy evaluation. There isn't much to evaluate when his vocabulary is so tiny. The therapist showed us some things to do at home, but we already do all of those things. So, I guess he just needs time. Hopefully he will begin to understand more and more and then therapy will be more beneficial for him. For now, he'll continue to go once a week. So, I think we'll also keep his normal ESD preschool class, though we may try to get him in to a morning class so his nap doesn't get interrupted. It's clear that we can't really push the speech thing too much right now, and we just need to give him some time.

We nervously started his Lamictal wean last week. I really don't think the Lamictal is doing anything for him, so I believe that we will be able to wean it completely over the next few months. However, I have never heard of a single case of someone who had the VNS as their only line of treatment for a seizure disorder such as John's. If he can manage to come off of the Lamictal completely and still be seizure free, then he will be one of an incredibly lucky few. We took out 1/4 pill, and will continue to take out another 1/4 pill about every 10 days. If anything feels weird or he gets sick, then we will postpone the reduction. When we get down to 30-40 mg/day, then we'll switch to smaller pills and take out 5 mg (or 2.5 mg) at a time. So far, he has gone from 75 mg/day (3 pills), to 68.75 mg/day(2 3/4 pills). It's been 7 days, and we haven't seen any problems at all.

Still seizure free

The title says it all. It's been 5 1/2 weeks since we last saw a seizure.
He's just having a good time being able to be a kid again.
He is still having some issues with learning. I don't think he's fully capable of learning new words yet. It might just take time, or it might just be the way things are. We have no idea what underlying problem caused the seizures, and we don't know if all of the seizures have causes some brain damage. It doesn't really matter. He's seizure free, and we couldn't be happier.

The neurologist got back to me regarding the VNS settings. Thankfully, Cyberonics said that his settings were perfectly safe. They said that their advice would be not to touch anything. Seizure freedom is very hard to attain, and once lost there is no guarantee that you can get it back. We agree completely. So, if he stays seizure free, he doesn't need to go back to the neurologist until 2006.

His early intervention preschool has been a bit of a disappointment. It's just like any other preschool I guess, in that they don't teach much of anything. Really, it seems to be just a place to drop the kids off so that the parents can get a rest. Some of the kids have behavior issues too, and it scares John. I think what John needs is intensive speech therapy. So, I may have to try to set up a meeting to discuss our concerns. We will also be getting private speech therapy in addition to whatever they provide. The other problem with this preschool is that it is from 1:30 to 3:30 in the afternoon. This is prime nap time for John. With his Lamictal already causing sleep problems, we can't afford to interrupt his naps. So, he's already missed some classes, or part of classes. Maybe we can get him put in to an earlier class.

4 weeks seizure free

We've still seen no sign at all of any seizure activity since June 21. He hasn't had to wear his helmet for 2 weeks now. It's amazing.

We went to see John's VNS surgeon and his neurologist yesterday. The visit with the surgeon (actually just his nurse) was just to make sure that everything was OK. The cuts are healing fine so it was a quick appointment. They were really happy to see John doing so well. I don't think they get much of a chance to see the kids after they put the VNS in, so I think they were really happy to have the chance to see how they changed his life.

We made the appt. with the neurologist because I was a bit concerned about the duty cycle of John's VNS, and we had some questions about the Lamictal, etc. When we told the doctor that John was only on 75mg of Lamictal, and hasn't had a seizure in 4 weeks, he shook his head in disbelief. He really looked over the charts that I had brought in, as I don't think he fully believed himself that the VNS would have such a dramatic effect. Before John got his VNS, we had asked if he had any patients that had a very successful outcome. He said there was one kid who went from 300 to 30 seizures per day. I think John might now be his best example of the possiblities.
I brought in the physicians manual for the VNS, and had the parts highlighted that showed that a duty cycle of over 50% was not advised (John's is 56%). He said that he's never heard of a single case of nerve damage, and that Cyberonics knows what he is doing, and that many kids are on an even greater duty cycle, etc. But, you couldn't argue with what that manual said, so he is going to call Cyberonics and we'll find out later this week what they say. I really hope that they can tell us that his current settings are safe. We don't want to touch anything if we don't have to.
So, he didn't change the settings on the VNS, but if Cyberonics says his current settings are risky, we can get them changed at any time. He did a lead test of the unit, and it was a very good 2. The battery was at 3. It runs out at 7. At first I thought that sounded terrible, but he assured me that they usually start at 2, so his is fine. We expect it to last about 2 years at the current setting.
We asked at what point we could consider weaning the Lamictal. We were expecting him to say that we should never wean it, or wait at least 6 months. But, I think he believes (like we do) that the VNS is solely responsible for John's improvement. So, he said we could start weaning in 1 month and take out 1/2 pill per week. Geez, even I'm not comfortable with an aggressive schedule like that. So, now we know we can wean that with the doctors blessings whenever we are comfortable doing so. I think we'll wait a few months, then go much more slowly then he mentioned.
He said we didn't need to see him again in 6 months. Woohoo!

John also started his preschool today. Yoshie will stay with him for the first couple of classes, but since John has a 1 on 1 aide hopefully Yoshie will be able to let him stay by himself after awhile.

We are also going to get John some speech therapy now that I think he is capable of learning again. I sent the list of approved therapists to our doctor so that he could give us a recommendation. Hopefully we can get that started pretty soon.

2 weeks!!

John hasn't had any seizure activity at all for over 2 weeks now. He continues to get better in every respect. His turn-around is miraculous. I don't want to jinx things by being overly optimistic, but he really is doing well right now.

I think this graph of his seizures speaks volumes (click to get the full size pic):



As you can see, his improvement was dramatic and fast.

Here is a picture of him taken this week:




John still isn't sleeping as much as a 3 year old should. I don't know if it's just because he is so excited these days, or if the Lamictal is causing this. It's obviously a minor issue, but enough of an issue that I'd like to try to lower his Lamictal after a few months if he remains seizure-free. His VNS setting also worries me a little. His duty cycle is officially 56%. The formula is time on (14 sec), + 4 seconds (2 seconds ramp up and ramp down) divided by time on (14) + time off (18). Cyberonics warns that you should keep the duty cycle below 50%, but then they advertise that you can go down to 7 seconds on, 12 seconds off (58% duty cycle). I contacted Cyberonics about this, but of course they wouldn't tell me anything. In any case, I'm not really concerned about this. But, it's another thing to talk to the neurologist about.

1 week seizure free!

John continues to do amazingly well. He still has not had a single seizure since last Monday morning. And, he feels great. He's basically picked up right where he left off about 18 months ago. He's learning some new words. He's pointing at things that he wants. We can easily make him laugh. He finally has taken an interest in our cat. He is interested in books. Mostly, he has become a computer junkie. He loves http://www.kneebouncers.com. He'd play all day if we let him.

We were able to go out to eat and he sat in a high chair without his helmet. We even let him run around the carpeted area of our house without a helmet now.

It still doesn't feel real to Yoshie and I. He got better so quickly, and really unexpectedly. I don't think we believed we would ever see him like this again. We're thinking about the future again. The seizures will likely return, but I doubt we'll see the constant daily drop seizures again. He's showing us that he is still capable of learning, and I believe that will continue indefinitely now.

Unbelievable!

John hasn't had another seizure since my last post!!! It's now Wednesday afternoon, and he hasn't had a seizure since Monday morning. He's doing so well, that it is hard to believe just a few weeks ago he seemed to be going downhill quickly. I know that this could well just be temporary, but it's been such a nice break for us. If nothing else, we are re-energized and ready for whatever comes next. And, of course we have re-gained some optimism. Of course, our real hope is that we never see another seizure.

Great news!!

We're scared to say anything, as we know things can turn bad quickly. But, John has continued to get better and better. He has only had 4 seizures in the last 3 days! That is just unbelievable!
He's feeling better, more attentive, able to concentrate better. It's just amazing. We know enough not to get too hopeful, so we're prepared for whatever happens. But, at the same time, it feels like we've gotten our life back for the time being.
Hopefully, one day soon I'll be able to report a completely seizure free day.

Good news for a change

John did have another grand mal seizure early Friday morning. This one was only about 20 seconds. That's it for the bad news.

Since John had his VNS adjusted last Wednesday, the number of seizures decreased over 4 days all the way down to only 8 seizures in one day!! This was his best day since this whole thing started over a year ago. Since then, he has remained very good, having between 10 - 16 seizures per day. That is a huge improvement. So, I think the VNS is working.

We hate to make any big changes right now, but John was still having some strong seizures where he would have to catch his breath afterwards. My gut still tells me that this is the Lamictal causing this. So, we made another small decrease in his Lamictal on Monday. He is now on 87.5mg/day. We'll give this at least a week and watch his seizure count and intensity very closely. Hopefully, the count will stay the same and the intensity will get slightly better. There is always some increased seizure activity a few days after a med decrease, so it might get worse before it gets better so we'll have to endure that first.
We know that the grand mals can come at any point these days, and they can be terrifying, so Yoshie has had family and friends stay with her at all times lately.

The other good news is that we had our IEP meeting for John. This is the meeting where the specialists meet with us and test John to determine what sort of therapy he needs in the coming year. They agreed that he needs a 1 on 1 aide. He will start his preschool in July going 2 hours, twice a week. Yoshie will stay there throughout July, then hopefully we can leave John with just the aide at that point.

Also, John turned 3 years old on the 13th. He still doesn't understand birthdays or presents, but I think he liked having all the people around. He didn't seem too interested in his presents on his b-day, but he has begun to play with his new toys over the last couple of days.

Another GTC

Well, we knew things were risky 3-6 days after a decrease in the Lamictal dosage. We decreased his dose on Sunday night. Sure enough, 3.5 days later (this morning) John had another Grand Mal seizure.
Yoshie had taken John to the park to play. He started seizing and couldn't come out of it. Yoshie screamed for help and some people that were walking in the park came over to help her. She called me and I raced home. When I got to the park, John was sleeping on a blanket, with some curious onlookers around him. Everyone was very nice and helpful. We carried him home and he slept for an hour. He's still sort of out of it today, and looks on the edge of having another big one. Hopefully we can avert that.
This one was about 1 minute in length, and he came out of it just as he was turning blue. Yoshie used the magnet and she thinks it may have helped. I also had a chance to use the magnet at lunch today when he started seizuring for a few seconds and it seemed to work.
I think the next couple of days might be tough, then hopefully we'll see an improvement - at least until the next drop from 100mg to 75mg.

Another neurologist visit

Since John's GTC, we lowered his Lamictal dose to 100mg. I was sure that the doctor was going to scold us for that. The first thing I told him was that we lowered it, and I intended to lower it again to 75mg. He said, "Sounds good to me". So now we are hoping that the decrease in Lamictal will also mean no more GTC seizures. There is a good chance of some withdrawal seizures, though. So, the next couple of weeks could be tough.
He was willing to try out our theory that the VNS is causing the decrease in the number of seizures, and the Lamictal was causing the stronger seizures. So, he turned the VNS up quite a bit. It's now rapid cycling at 14 seconds on, 18 seconds off, at 1.5mA. I was uncomfortable with the amount of stimulation that he was getting (it's on 43% of the time). But, he wouldn't budge. Of course we could have demanded he change it, but he explained how he's done hundreds of them and I left there believing that he knows what he is doing. If this shows promise, it will be changed to 7 sec. on and 12 seconds off on our next visit. I'm actually more comfortable with that, because it would be stimulating him less overall. I tried to get him to go to that setting right now but he wouldn't do it.
John tolerates the VNS extremely well. It doesn't seem to bother him at all. It takes some kids many, many months to get to this level comfortably.
I also had him give us another prescription for Diastat (emergency drug for the GTC seizures). Our current dose was only 2.5mg. I was reading the patient information and it looked to me like John's dose should be 10mg, based on his age and weight. He agreed.
We asked about being referred to Seattle or LA for more testing and a 2nd opinion, and he agreed that this would be a good idea. We'll get that ball rolling in the next couple of months.
As we were leaving, I mentioned John's new seizure type: opening his mouth and turning to the left. These seizures are so minor that we almost didn't mention them. Sure enough, right after we talked about it John did it right in front of the doctor, then preceded to have a drop seizure. The doctor immediately said that this might be significant. He said that looks like a focal point, and he wants more testing done (probably in Seattle). I told him that we already had the full workup to look for a focal point and there was none. He said, "we need to have someone else take a look". I hope this also means that they will be willing to do a PET or SPECT scan now. They wouldn't do it before as they were positive that there wasn't a focal point.
Anyway, it's only a glimmer of hope, but if they could find a focal point, that would be HUGE! If the focal point is in an easily accessible location, they can go in and remove that part of the brain. I never thought we'd be wishing for brain surgery, but that's exactly how we feel. This type of surgery has a better than 50% chance of curing the epilepsy.

1 year anniversary

John's 1 year anniversary of his epilepsy diagnosis came and went without any fanfare. His seizures are obviously worse now than they were a year ago. Cognitively, I think he's stayed right at about an 18month level. Of course we never thought we'd still be dealing with this a year later, but at the same time I know things could get a lot worse.

Stats for the year:
- over 17,000 seizures that we've seen. Half just head drops, and half full on drops.
- 1 Grand Mal seizure
- 6 failed drugs: Ativan, Depakote/Depakene, Tranxene, Topamax, Felbatol, Lamictal. (plus a trial of Pyridoxine).
- 9 months of the ketogenic diet.
- VNS surgery
- 2 neurologists
- 3 visits to the ER
- 3 visits to the urgent care clinic
- 1 ambulance ride
- Tests: 3 EEGs (1 short, and 2 long), MRI, CT Scan, Spinal tap, over a dozen blood draws
- Other therapies: homeopathy, chiropractic, naturopath.

First Tonic/clonic

Thursday night, I was all ready to finally post a positive report. He had 4 days of improving seizure numbers. Thursday, he had the fewest number of seizures in a day since last September. Friday morning started pretty good. He was in good spirits and only had a couple of small seizures in the morning. At about 7:45 he fell over sideways and I caught him. He started to convulse, and seemed to try to come out of it a couple of times in the first 5-10 seconds but couldn't quite stop it. He continued to shake violently as I carried him into the living room and eventually outside. He wasn't stopping. At this point, his lips were blue, he was foaming at the mouth, and his face looked completely lifeless. We always knew that a Grand Mal seizure was likely to happen at some point, and I was prepared for the prolonged convulsions. However, I was not prepared for the look on his face. I really thought he was going to die right there. Yoshie had already dialed 911 and I took over the phone while Yoshie took John. At this point, he wasn't shaking anymore, but was completely limp and lifeless. Thankfully, his color started to come back pretty quickly. The ambulance and fire engine arrived in just a few minutes and by the time they got here he was sound asleep on our living room floor. There were 8-10 paramedics in our living room, and they gave John some oxygen and checked his glucose levels, etc. Everything was fine, but since this was his first generalized tonic/clonic (GTC) they wanted to take him to the hospital for observation. Yoshie rode with John in the ambulance. Many of our neighbors had gathered in our driveway and they all volunteered to help out with Maya. So, Maya actually got to school as normal while I drove to the hospital.
John was still asleep when I got to the hospital, but he woke up a short time later. Once he woke up, he seemed completely back to himself. So, we were soon able to leave. I think we were home by 9:30am.
At first, I thought John's convulsions lasted about 2 minutes, and that is what I told the paramedics. Yoshie has since convinced me that the actual convulsions probably lasted more like 75 seconds, and he was limp for another minute after that. It seemed like an eternity, though. And, I never even thought to use the VNS magnet. Doh!
I talked to our neurologist on Friday, and he didn't want to change anything with the meds right now. The reason being that the NUMBER of seizures that John is having is greatly improved. However, I still think the total energy released from the seizures is the same. He thinks that the tonic/clonics are just a progression of John's epilepsy. I feel like the coincidence is just too great that this happened 5 days after increasing his Lamictal to 125mg.
Since Friday, John has had a number of seizures that seemed like they were going to turn into full blown GTCs again, but he either came out of them after a few seconds, or we were able to stop them with the VNS magnet. Still, they are super scary, and we decided tonight that we'd rather have more smaller seizures, if given the choice. So, against the doctors suggestion, we took out 25mg of his Lamictal today. There is a decent chance that the decrease in seizure numbers is due to the VNS, and not to Lamictal at all. We want to know this for sure before we risk another seizure like that. So, we may end up going back up on the Lamictal in the future, but for now I want to see what he is like at 50mg/day. It will take some time to get down to 50mg/day, and we expect more withdrawal seizures along the way. But, we're crossing our fingers that the number of seizures remains low, while the severity improves. It could happen, but we've also learned not to get too optimistic.

Friday curse returns

It used to seem that every Friday was a bad day for John. We never did know why, but it happened enough times that we came to expect bad days on Fridays. Over the last several weeks, this pattern didn't hold true - John was having just normal days on Fridays. Well, the Friday curse returned with a vengeance last Friday. John had 58 seizure episodes, which is 20% more than his previous worst day. And, he was having those mouth-opening seizures for long periods throughout the entire day. He woke up at 5am, and didn't get to sleep until 11pm, but took a 4 hour nap during the day. He had a good 2 hours in the early evening where he got back on his normal schedule of 1 seizure every 20-30 minutes or so. But, the rest of the day seemed like almost non-stop seizures. We came very close to using our emergency drug (Diastat), but held back because John was NOT suffering. Outside of the constant seizures, he was fine.
Saturday, was a little better, though still bad. In this state, we decided not to increase his Lamictal just yet. Sunday was better again, so we gave him an extra 12.5mg of Lamictal at night. As of Monday, he's on 125mg/day. (9.6mg/kg, therapeutic is 5-15).
Monday was another pretty bad day (40 seizure episodes), with some very strong extended seizures.
So, it doesn't look good for the Lamictal. We could certainly go higher on the dose, but I don't think there is much point since I don't think we've seen any improvement at the current level. We'll give it at least a few more days to build up in his system, then if there isn't some real improvement I think it's time to push to get rid of it. I'm not sure what the next step is. Lamictal can be a tough one to wean, so I guess we have a couple of months of that ahead of us. I suspect the Dr. will want to add another drug as we wean down on the Lamictal.

New seizure types

I'm 100% certain now that the involuntary opening of the mouth is a new seizure type. This would be a partial seizure, which John has not had before. He has these for 45+ minutes a couple of times a day. During this time, he usually has a flurry of drop seizures as well. It's horrible to see. Lamictal has been known to cause this sort of thing, so that is likely the culprit. Also, John had a lengthy absence seizure today. This is where he just stares off in to space, and you can't snap him out of it. In addition, he had a couple more longer seizures where he will be twitching. I was using the computer last night, and it got quiet (rare around here). I turned around and John was on his back, with his arms in the air twitching, but with a smile on his face.
Because of this, I was ready to get rid of the Lamictal. I called the neurologist today and he was not ready to give up on the Lamictal yet, for the simple reason that the NUMBER of seizures John has had the last 2 weeks has been substantially less. We're scared to death to increase his dose yet again on Friday, but I agree with the neurologist that we have to know for certain that we gave the drug a fair trial. Since the drop seizures have decreased in number, there is a chance that the drug can get rid of a lot more at a higher dose. And, it is true that John seems very good in between the seizures now. He runs around, smiles, and laughs and lets us forget about his troubles for small periods of time. Next week will be interesting. And, if the other seizures get worse again, we'll start weaning the lamictal, regardless of what the doctor says.

Things are changing

By the numbers, last week was a good one. He had 300 seizures from Sunday to Saturday. That was his best week since early February. As always, there is another side to the story, though. John has started having some longer seizures, where he actually shakes for a few seconds and does not breathe. We haven't seen that before, and it is downright scary. It scares him too. Also, over the last few weeks he has started to open his mouth wide repeatedly, usually just before having a seizure. I think this is an involuntary action, and could be a new partial seizure type. These negatives are almost certainly caused by his increased Lamictal dose (he's now on 100mg/day), though it's possible it could be related to the VNS as well. I really don't know if this is an improvement or worsening of his seizures.
John seems to have longer periods of real clarity now, which is great to see. I think something is working to clear up some of his background seizure activity, at least some of the time.

John's VNS is still set to go on 21 seconds, off 30 seconds. This means that it is on 41% of the time. Cyberonics says you should not have it on more than 40% of the time, as it has shown to cause nerve damage in animals at that level. This makes me nervous, and I think I'm going to ask to have it changed back to a more normal cycle on our next visit.

We have one more increase in the Lamictal next week before we make any decisions on what to change. If the Lamictal doesn't show some dramatic improvement soon, I am going to push for getting rid of it. I want to know if these new seizure types are related to the Lamictal. And, I have a feeling that the decrease in seizure numbers may be due to the VNS, and not the Lamictal at all.

Today, John had 32 seizure clusters, and 32 seizures, meaning he didn't have a single cluster of more than 1 seizure. I'm going to have to quit calling these "clusters". He only napped for about 10 minutes today, so those are some really good numbers. And, he was in a really great mood for many hours today. However, he also had 3 or 4 very large seizures today.

Lamictal now therapeutic

As of yesterday, John is taking 75mg Lamictal per day. The therapeutic range for Lamictal is 5-15 mg per kg. John is about 13kg, so he is just over the minimum therapeutic dose. It took him 2 months to get to this point. Ironically, yesterday was his worst day of the week. I don't think it means anything, as it takes a few days for the drug to build up in his system. But still, it doesn't leave us with a lot of optimism that things are going to get better this week.
John did do somewhat better last week than the 2 previous weeks. Hopefully, he's turned the corner and we'll start seeing some consistent improvement now.
We saw the doctor last Monday and had his VNS adjusted again. It is now set to go on 21 sec, off 30 seconds. It's set at 1mA, and the magnet is set at 1.25mA. I think it does bother his throat a bit now, and he coughs every now and then. No detectable voice change yet. So, I don't think it's doing anything yet, but hopefully we start to see some gradual improvement after a couple of months. Our next appt. is not for another month. At that point, the VNS will have been on for almost 2 months, and he will be at 125mg/day of Lamictal. If we don't see some significant improvement by then, I think he'll change the VNS back to a more traditional setting (on 30sec/off 3 minutes) but at a higher ampage. And, we may add another drug and start getting rid of the Lamictal, though I'm not sure if he'll want to try an even higher dose before giving up on it.

Worse again

At some point, things have to start getting better. It certainly hasn't happened yet. This week was another new record for the number of seizure clusters (285), despite being on more Lamictal. The Lamictal could well be making things worse but, like I said before, we don't have too many choices left so we need to at least get this one up to a high therapeutic dose before we give up on it. Of course, if this downward trend continues we will have to rethink this stategy.
There is some evidence that the VNS doesn't start working for people until after a couple of months. Hopefully, that is the case with John.
John hit his face a couple of time this week. He has new bruises on his forehead and his nose. And, he reopened the cut on his eyelid earlier in the week, as well as bruising it again.
We tried to go to a restaurant today for the first time in 10 months. Of course John made quite a scene by slamming his head into the dishes and spilling food everywhere. It was miserable and we had to leave early. I don't think Yoshie had a chance to eat anything.
We'll get the VNS turned up again on Monday. We're certainly not expecting that to help things at all, at least not immediately.
All that being said, things have been worse in the past. He's definately having more seizures now, but his mind seems clear and he's happy. It's better now than the times when he was just dull and never smiled. I believe that today ends his worst week that he'll ever have, seizure wise. I really think he is about to turn the corner and things will start getting better again.

continuing to get worse...

John had 48 seizure clusters 2 times this week, which ties his worst days ever. This was also easily his worst week ever in terms of seizure clusters. The VNS is not yet working. In fact, 3 times today he had a seizure immediately after I used the magnet. I'm getting worried that the VNS is actually making him worse. That is almost unheard of, but can happen.

We increased his Lamictal to 40mg/day. This also appears to either make things worse, or not do anything at all. He's still not officially at a therapeutic dose, but I think we would probably see some sign of improvement if this was to be his miracle drug. Since we don't have too many options, we'll continue to increase this weekly unless things really get out of hand.

John is completely off the keto diet. It's been really nice to not have to use the scale or prepare all his meals ahead of time. We're still keeping him away from heavy carb foods just to give him time to adjust. I took his ketone reading this week and it was 0. So, his brain is officially running on glucose again. We'd be happier about this if he were doing better. As it stands, it looks very likely that we'll have to put him back on the diet soon. At least he is able to enjoy meal time again. I hope this doesn't backfire. He may not ever go back to happily eating heavy cream and oil for his meals again.

The news is not all bad. John seems especially happy these days. The diet, the VNS, or the Lamictal has made a noticable change in his demeanor. I think his increased seizure activity is probably a direct result of him being in a good mood and running around all over the place. We're holding on to this slim hope that the VNS or the drug has helped his background activity, and it will help his clinical seizures at a higher dose.

Not much change

Things haven't changed much since the last time I updated. He continues to sleep poorly. He was up in the middle of the night 5 of the last 7 nights. He's usually up for 2-3 hours at a stretch, sometime between 12am -4am. It can be very frustrating in the middle of the night when he refuses to sleep. Yoshie handles it better than I do. :)

He is still having more seizure clusters than ever. Actually, his total number of seizures isn't that high, but he has a drop roughly every 15-20 minutes all day. I don't think the VNS has helped at all. Last week he had 222 clusters and 332 seizures. I guess that is a substantial improvement over the week before (252/457), so maybe he is getting slightly better. It sure doesn't feel like it, though. This week has started very poorly, so I don't think this downward trend will continue.

He's on 30mg of Lamictal per day now. We didn't see any improvement after increasing his doseage, but we also haven't seen any side-effects (except for the sleep thing). So, I think that is good news. He's still only at about 50% of his minimum therapeutic dose, so we shouldn't expect too much just yet.

He also had his VNS turned up pretty substantially today. He's now at .75mA, on for 30 seconds, off for 66 seconds. The magnet is set to 1mA. He had a bad day today, so that obviously isn't helping yet. Hopefully, it will get better with time.

Finally, we went down to a 1:1 diet ratio a couple of days ago. He can almost eat anything he wants now, outside of bread, pasta, rice, cereal, etc. We're going to bring him completely off of the diet over the course of this week. We're prepared to go back on it at any time, though. It appears to be the only thing that may have helped him - and we're only mildly confident in saying that.

My parents joined John, Yoshie, and I on a 5K fundraiser walk for the NW Epilepsy foundation on Saturday. Of course it rained, but it wasn't too bad. It was lightly attended, but I think they still raised at least $7K. Of course, we forgot to bring a camera. :(

tough week

The VNS isn't helping at all at the current settings. That first day, it seemed like we could stop the clusters. Now I'm not so sure. In fact, sometimes it almost seems like it causes him to have a seizure. I know that isn't likely, but I hesitate to use the magnet now.
John had his worst week ever as far as seizure clusters go. He had 252 clusters this week. The previous record was 211. A lot of this is due to him waking up for a couple of hours in the middle of the night almost every night. He has lots of seizures during this time. I don't think the VNS is causing this decline, as he already was in this bad state before the VNS was turned on.

So, we're left trying to figure out what is causing this bad stretch. It's either the Lamictal (either outright, or because it keeps him up at night), the diet ratio (our current thinking), the VNS, ongoing fallout from the Felbatol trial, or just coincidence.

So what do we do about it? We can't do anything about the Felbatol or coincidence. We're obviously going to continue with the VNS ramp up over the next few months. The Lamictal is at such a low dose that it is unlikely to be causing any problem. And, we really can't give up on this one. It's one of our last hopes for meds. The diet is a mystery. It didn't seem to help at all as we increased his ratio. However, if you look at the data, it appears that he really did start getting worse as we lowered his ratio.
So, the current plan is to keep increasing the Lamictal until it is therapeutic or the side-effects are too bad. And, we'll continue to ramp up the VNS every 2-3 weeks. We don't want to change too many things at once, so we'll leave the diet where it is for now. If things don't improve on their own after a couple of weeks, we'll probably have to give the diet another trial at a higher ratio. We know that it won't make him seizure free, and that is still our goal. So, we have to continue to explore paths that could potentially make this happen. If the diet turns out to be part of a mixture of treatments that work for him, than we'll keep with it.

So, we doubled his Lamictal dose today to 20mg/day. And, we are giving his nighttime dose much earlier (6:30pm), in hopes that this will help him sleep through the night.

Terrible day, but VNS offers some hope

John woke up at 4:15am and immediately started having seizures every 5-10 minutes.
He has done this before for an hour or two, but then will usually snap out of it. Today, he didn't snap out of it the whole day. We had his appt. at 9am to turn on the VNS. By that time, he had already had 60 seizures (15-20 clusters). He ended up with 48 clusters, and 98 seizures, easily his worst day ever.

He had his VNS turned on to .5 mA, on a 3 min off/30 sec on cycle. The first time it came on he gagged, and looked uncomfortable. So, it got turned down immediately to .25 mA, which is a really small "dose". The magnet activation was set to .5mA for 1 minute. John was having lots of seizures right in the office, even after the VNS had been turned on. So, we tried the magnet, and it seemed like it actually may have stopped the clusters. It's hard to know for sure, as some of his clusters are only 1 seizure anyway.
The rest of the day, we used the magnet every time we saw him have a seizure, which was a lot.
It seems like it IS working for all but the strongest seizures. It does not stop him from having a seizure in the first place, but does seem 90% effective in stopping the cluster after the first seizure. This is leaving us very optimistic, because this dose is just really low. I think there is a good chance that this will help him greatly at the higher settings. Time will tell. We're scheduled to have it turned up in 2 weeks.

Now we're trying to figure out why yesterday was so bad. It is very possible that this is due to the diet ratio. We're prepared to go back up on the diet ratio if he doesn't improve in a week. I was convinced that the diet wasn't helping him, but I'm not so sure anymore.

We are also going to continue increasing his Lamictal dose, but on opposite weeks of any VNS changes. The doctor didn't think it was likely that the Lamictal was causing his sleeping problems, but we don't know what else it could be. We tried giving him .5mg of melatonin last night, but it didn't have any effect at all.

Sleeping again, VNS cost, 1.5:1 ratio

It seems that the side-effects of the Lamictal may be wearing off. He slept most of the night for 2 nights in a row now, and is actually taking a nap right now. We'll probably have to go through this every time we increase the dose, which will be weekly for quite some time. That's OK, as long as it works.

I got the bill for the VNS surgery. It was over $48,000, and that doesn't include the neurologist or anethesiologist. That is double what I was expecting. It's a good thing I have good insurance.

The VNS gets turned on tomorrow. It will start at a low setting, so we don't really expect to see any improvement right away. But, we're at least hoping that we can use the magnet to stop some clusters.

We took another step down on his diet ratio yesterday. He is now at a 1.5:1 ratio. At this point, I think it's safe to say the diet is healthy again. He gets enough fruit, veggies, cheese, etc. to satisfy him. The only thing he is missing is the sugar and grains. This is probably only slightly more restrictive than an Atkins diet. Probably in the next couple of weeks he can come off of the diet completely. The only reason I hesitate is that when I look at his seizure chart, it appears that he started getting somewhat worse as we came off the higher ratios of the diet. I'm 95% sure this was due to other circumstances (ie. Felbatol), but I cannot be completely sure. In any case, we're ramping up with 2 treatments (VNS and Lamictal) right now, so I don't want to add a 3rd variable into the mix. If nothing else works, we can give the diet another try later.


I added a link to his seizure diary on the right side (under the picture). You can scroll through the tabs on the bottom to see the graphs.

Another trip to the urgent care clinic

Despite our best efforts to keep our house free from dangers, John still manages to have seizures in the worst possible places. Last night he had a seizure in front of the TV, and fell on the corner of the TV stand. He got a pretty good cut on his left eyelid, and it started swelling quickly. It was hard to tell how serious it was, so we took him to the urgent care clinic. As usual, we had to wait over an hour to see a doctor. By the time the doctor finally saw him, the swelling had gone down and the cut had closed up nicely. He said he wouldn't recommend stitches in this case, and I happily agreed.
Because of this, John got to sleep rather late. We thought that would mean he would at least sleep through the night. Unfortunately, that didn't happen. He was up from 12:00 am until 2am. Thankfully, he did sleep until after 8am this morning, so at least he got a good 8 hours of sleep (still about 4 hours short of what I think he needs). He had a lot of seizures during those couple of hours in the middle of the night, so our streak of decent days is sure to come to an end today.
The good news is that the side effects of the Lamictal appear to be limited to sleep problems. He seems to be full of energy during the day, and very happy.

Sleep....or a lack thereof

We increased John's Lamictal to 10mg a few days ago, and this seems to have further aggravated his sleep problems. He routinely wakes up during the night now. Last night was the worst - he was up from 12:15am to 4:30am. He cries a good portion of this time, and it's just miserable for all of us. Amazingly, he seems well rested after waking up just a few hours later. The same cannot be said for us parents. If this drug is causing these sorts of sleep problems at 10mg, I wonder what it is going to do at 100+mg? In fact, John can theoretically go up to 290mg/day. Often the side effects wear off after awhile. Obviously we're hoping for that.

Friday and Saturday were pretty good seizure days, then Sunday turned out to be really terrible (37 clusters). Yesterday (Mon) was better again. We've quit giving him most of the supplements, including the prescription carnitor. We've always suspected that this made him worse. His carnitine blood levels were low, but he doesn't show any signs of carnitine deficiency, so we're holding off for now. With his lower diet ratio, hopefully he just doesn't need the carnitine anymore.
The 2:1 diet ratio and increased calories have caused his glucose to go up slightly (now in the 70's). However, his ketones remain sky high (5+). In fact, I'm beginning to wonder if his high ketones are contributing to his waking up at night. It doesn't make any sense that he should have such high ketones on a 2:1 ratio. He really is a mystery.

Yoshie sewed a piece of foam onto one of his shirts to protect his VNS area. Seems to be working great so far. The incisions look better each day. He's still taking Tylenol every 5 hours, but we've lowered his dose somewhat.

Even though he was wearing his helmet, he managed to fall right on his forehead on the small exposed tile area of our kitchen. So, he has yet another bruise on his forehead.

Recovering from surgery

I always read about kids that are "back to their normal self" 2 or 3 days after the VNS surgery. I would say John is 80% back to normal. He still requires a pretty hefty dose of Tylenol every 5 hours or so. And, when he gets tired or cries a lot it sounds like he is losing his voice. Plus, his sleeping patterns are still screwed up - he was up crying from 2am - 4:30am on Wednesday. I think his incisions are healing fine. I don't really know what to look for, but Yoshie assures me that they are OK. We have to keep him in a turtle-neck so that he doesn't scratch the wounds.
His seizures are back to normal, which is too bad. He's having pretty strong drop seizures, and it seems like he manages to fall right on his VNS quite frequently. He doesn't complain, but it sure seems like that must hurt. We're going to try to get him to wear a life jacket for the next couple of days for protection.

We're planning on doubling his dose of Lamictal either tonight or tomorrow. So, as always, we're hopeful that we'll see some improvements in his seizure activity.

Also, since the 2.5:1 diet ratio obviously isn't working, we went down to a 2:1 ratio and increased his calories by 130. He got an amazing 50g of tofu for lunch today! We try to get most of his fats in via healthy oils, so he doesn't have to eat much whipping cream anymore. That's good, as it was getting increasingly more difficult to get him to take it.

VNS

We arrived at the hospital just before 7am, got checked in and everything without any problem. John had to take some drug to calm him, but since he couldn't have any carbs, we had to mix it in some diet pop that we had brought. Unfortunately, the drug had a very strong taste and John wouldn't touch it at all. So, they had to stick a syringe thing up his nose to get the medicine in him. He was screaming through all of that, but as soon as the medicine got in him he instantly calmed down. Within minutes he started acting completely drunk. It reminded us a little of how he was when he was first put on high doses of his seizure medication.
We carried him towards the operating room, but at one point they stopped us and said we couldn't go any further. He was so out of it by that point that he didn't mind leaving us behind. That was about 8:30am.
The wait was brutal, of course. At around 10:30, one of the nurses came by and said they were done and he did great. That was a big relief. A couple of minutes later one of the doctors came by and said everything went fine, and that he was in the recovery room and somebody would come get us when he woke up. Just then, the nurse came in and told us that he was already awake. So, we went to the recovery room and he was being held by a nurse. He was still wearing his pants and slippers! He was completely out of it, but I think he knew when Yoshie was able to hold him. His incisions didn't look very big at all. I was expecting them to be much bigger for sure.
After staying there for a few minutes, the surgeon came in and repeated that everything had gone great. He said John's vagus nerve looked good and was easily accessible. He said something about the impedence being 1-1, which is the best. I'm not sure what that means, but I'll look it up later. After they were sure John was stable, we went to his room. After that, it was just the typical hospital experience. He did develop a big bruise on his belly that concerned the nurse enough that the neurosurgery nurse had to come up to take a look at it. We just monitored it closely to make sure it didn't get any worse - it didn't.
So, everything went fine and we were able to come home today. After being home for a few hours, John vomited a couple of times. Yoshie called the nurse and they didn't sound too surprised. They said to call back if he continues to vomit.
One interesting thing is that John had his best seizure day in a long, long time today. That was a bit surprising. It could be because of the Tylenol. Or, it could be the antibiotic. Or, it could be that he just wasn't very active. Or, as always, it could just be chance. We were expecting the seizures to get worse. That certainly didn't happen.

All set for VNS

Well, we're all ready for tomorrow's VNS surgery. We're scared of the surgery, but excited to have a chance to help his seizures. His temperature was totally normal today, which is a big relief. He was at 100.1 yesterday morning, though still not acting sick at all. The surgery is scheduled for 9am, and we are checking in at 7am. Hopefully, it will be all done by noon. Yoshie had to cook all of his keto meals for the next couple of days. The plan is to have her stay overnight tomorrow, and I'll come back home to stay with Maya. We expect to be able to come home on Tuesday.

Seizure-wise, he had another tough week. He probably averaged around 30-32 cluster/day this week. Today was the worst at 37 clusters (70 seizures).

I finally picked up his Lamictal prescription (we've been using the samples until now). I was shocked to see the price of this drug was $804 month, even at this low dose. Thankfully, I have good insurance and it only cost us $20. I really feel sorry for all those people without any insurance.

pre-op

Today we went for John's pre-op appt. His VNS surgery is 1 week from today. It was mostly just answering questions and doing some paperwork. He did have to give blood again. We were able to see the post-op area, etc. It's sort of nice to know exactly what to expect next week. John is scheduled for first thing Monday morning. We have to be at the hospital by 7am. I suppose by lunchtime, it will all be done.

There hasn't been a lot of changes with his seizure activity over the last few days. He is still having a lot more frequent drops than we've ever seen before. There might be a slight trend towards fewer clusters and more actual seizures. Again, we don't know if this is good or bad, but I think this is due to the Felbatol finally getting out of his system. He only had 22 clusters today, which is his best since Mar. 7.
Unfortunately, John had a 99.8 temperature again this evening. We really, really don't want him to get sick this week. We cannot easily reschedule this surgery, due to our changing insurance plan.

Since things haven't leveled off yet, we're still cruising at a 2.5:1 ratio with the diet. The glucose numbers finally have climbed into the upper 60's, as we would expect at this ratio. It always takes about a week after a diet change to actually see any change. Ketones are lower, as well. They are now generally in the 3-4 range at night. This is a good range for many kids for seizure control. Not so for John.

Just to prove that John is a happy guy, here is a video of him helping with the housework.

lots of seizures, but no rash

The bad news is that John is continuing to have 30+ seizure clusters per day. This is far more than he ever had before the Felbatol. He hasn't been on Felbatol for 5 days now, so it should be almost completely out of his system. It's very discouraging that he didn't get better as the drug levels went down. It's looking like his brain "learned" to have these extra seizures, and this is just the way it's going to be now.
The good news is that we haven't seen a rash yet from the Lamictal. The longer he goes without a rash, the less likely he is to develop one at all. I guess the other good news is that these seizures don't seem to wipe him out at all. He's perfectly happy in-between the seizures.

Our new cat (Luna), got sick last week and we had to take her to the vet. I find it very interesting that there seems to be a lot more compassion from the staff at the vet (for a simple bronchial infection) than we've ever seen from John's doctors. The vet even called to see how she was doing. No doctors have ever done that for John. BTW, Luna is fine now.

felbatol out, lamictal in

John ended up having 40 seizure clusters on Friday. It got so bad, that I took the afternoon off work to come help watch him. He was completely fine between the seizures, so we didn't give him any "emergency" drugs or take him to the ER. In both cases, he would just get a big dose of benzodiazapenes, which would wipe him out and wouldn't help his seizures anyway. So, we just tried to keep him safe. We knew that the weaning of the felbatol was the culprit in this, so we probably should have given him a little felbatol. We couldn't bring ourselves to give him any more of that drug, though. So, he officially went drug free again on Friday.
He got slightly better on Saturday (33 clusters), and again better on Sunday (27 clusters). This is still far worse than what I consider his baseline of 15 clusters and 40ish seizures. Hopefully he'll continue to improve.
He started Lamictal on Sunday. It will take a couple of months to know if it's doing anything. Right now he takes a tiny pill only in the morning. At this point, we'll consider it a success if he doesn't have a bad reaction to it.
It seems like maybe his seizures are changing a bit again. I think he's having more absence (staring) seizures. Plus, some of his seizures now are just a general tightening of the muscles, rather than a drop. New seizure types either mean he's just getting worse, or it sometimes means that the brain is trying to rewire, which is good. So, it could be bad or good. I doubt it's due to this miniscule amount of Lamictal he is taking - but it could be. Lamictal takes ~6 hours to reach peak levels in the blood, and has a half life of 30-36 hours. So, I guess we can hope for a gradual improvement over the next couple of days.

bad drug

Felbatol has turned out to be a real nightmare. We are trying to get rid of it, but with all seizure medications, you cannot just quit taking the drug. We were told that the absolute fastest we can get rid of it is a 200mg reduction every 3 days. We intend to follow this.
John goes through periods now where he will have a seizure cluster every 5-10 minutes. His 4 worst days ever (by # of clusters) have come in the last 5 days. Now we are just really hoping that he will get better as he comes off of the drug. So far, he seems to be getting worse, if anything. He's had 29 clusters each of the last 2 days, and today looks like it could be far worse than that.
As for the diet, he's down to a 2.5:1 ratio. We went down further because his ketones are still sky high (5+) and his glucose is super low (58). He's in a deeper ketosis now than he ever was at a 4:1 ratio. It's obviously not doing anything for him. It's possible it's making him worse, though, and that is why we lowered the ratio. There is no explanation as to why his ketones remain so high. I suspect it is some undocumented side-effect of the Felbatol.
John also threw up again yesterday. He's vomited more in the last week than the rest of his life combined.

31 seizure clusters

John's all time record for seizure clusters was set just a few days ago at 26. Yesterday, he had 31 clusters. That is basically a cluster of seizures every 20-25 minutes all day long. He also ended up with 96 total seizures, which is pretty close to his worst ever. We're hoping that these are still a result of the Felbatol, and that he'll get better as we come off of this drug.
Interestingly, his blood glucose was 60 again, and his ketones were 5.6. We would never expect numbers like that on a 3:1 ratio. I have no idea what is going on. It MUST be some reaction to the drug.
We're taking out half of his dose today, so hopefully we'll see some improvement.

John also had his hearing checked today. That is standard procedure for speech delayed kids. His hearing was fine, as we already knew.

Done with Felbatol

John threw up again today, 90 minutes after his morning Felbatol dose. I called the neurologist and he said that we should go back to the lower dose, give his stomach a few days to recover, then start with a new drug - Lamictal. It will take 10 weeks to get to the therapeutic dose of Lamictal, so it will be well after the VNS surgery before we know if it is working or not. Thats Ok. It's clear now that the VNS is the logical next step, so we're ready to do it.
I also talked to the dietician today, and she agreed that it is time to wean the diet. We are going to go down at .5 increments every couple of weeks and monitor him closely. Once he's at a 1:1 ratio, we'll quit weighing the food, but still keep him away from heavy carbs for awhile.
I got Yoshie a cat for her anniversary present, today. We've never had a pet, so we'll see how it goes. She seems very good natured and friendly so far, and Yoshie and Maya are really happy about this. John doesn't seem to care one way or another. He sometimes pets the cat, but sometimes pulls her tail. :) The good news is that the (nameless) cat seems to tolerate this OK.

2 new records

We upped the Felbatol dose Sat (Mar. 5) to 600mg/day. Sunday morning he threw up everything about 90 minutes after he took his morning dose. He also had a slight temperature (99.5), but no other sign of sickness. The same thing happened last week when we increased the dose from 200mg to 400mg. I'm certain now that this is more than just coincidence. He is still refusing to eat some of his meals, and is not napping as usual. So, we're definately seeing some side effects. We could live with the side effects if this drug were helping his seizures. However, it seems that his seizures have only gotten worse - he had a record 26 clusters yesterday. If today is equally bad, I think we'll have to start getting rid of this drug. I'm certainly not willing to go even higher on the dose at this point.
We're still trucking along at a 3:1 ratio with the diet. Yoshie made his old favorite, "chips & salsa" over the weekend and I think he really liked it. These chips are just ground up almonds, fried in oil. He gets 2 or 3. And, the salsa is actually a couple of grams of real salsa mixed with flax and olive oil, and a tiny bit of salmon (for protein). He also gets his customary whipping cream to get to the required fat.
With this lower ratio, we would expect his blood glucose to go up, and his ketone level to go down. Last night, his ketone level was a very high 5.6, and his glucose was a very low 56. In fact, this 56 was the lowest we've EVER seen. I suppose this could be related to the fact that he isn't getting enough calories right now. We can't let this continue. This furthers my thinking that the diet just isn't working for John, as those numbers are exactly what we've been striving for for months. Now, we finally get them, and John has his worst day ever (as far as clusters).

More Felbatol

I'm sorry to report that the increased Felbatol dose isn't helping his seizures at all. Furthermore, the side effects are getting more pronounced. He now is not interested in breakfast at all. We really have to force him to eat anything. He already gets so little, that this is really worrisome. If this side effect doesn't wear off soon, I think we'll have to quickly wean the diet so that we can give him other foods that he would enjoy.

We saw his neurologist again yesterday. It was a dissappointing visit, as he really said he doesn't know what else to do at this time. So, we are going to keep increasing the felbatol dose in hopes that it will work at some level. He told us to keep going up until John's quality of life deteriorates too much, then we'll back off some. The suggested maximum dose is 45mg per 1kg of weight. John is 13 kg, so he "should" have a max dose of just under 600mg. As of today he is on 600mg. However, he wants us to go up to 900mg if possible. That is very scary. He also told us that one of his patients died because of Felbatol. This girl also had Lupus, so it's a different situation, but still scary.
John also had to give some blood again yesterday. He cried, which is a good thing (at one point he was so drugged up that he didn't even care).

John has been doing a great job wearing his helmet. He doesn't seem to mind at all anymore, which has really made things easier for everyone.

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.

January 2005

We continued to wean the Topamax in January. On January 25, John was officially drug-free!!! He did have a bad stretch of seizures in the later part of December and the early part of January. This could have been due to the tranxene wean, the Topamax wean, the constipation issues, or just some random cycle. In any case, by the middle of January he was back to averaging about 50 seizures/day. So, I think it's fair to say the drugs really weren't making any difference. John is super happy these days. He's full of energy and smiles all the time. Unfortunately, the seizures are still almost exclusively drop attacks, so we have to follow him at all times with his leash.

Due to the recommendations on the ketogenic diet mailing list, we began to see a "chiropractic neurologist" in January. We had been looking for someone like this for awhile. By coincidence, one of the workers at the play gym that John sometimes goes to gave Yoshie this guys name and number. He ran some odd tests on John during his first visit. He wanted us to try gagging John 3 times a day for starters. Sounds strange, but we did it. It didn't seem to help. In subsequent visits, he had us try other sorts of non-conventional things, but nothing really seemed to help or hurt. By the end of January, he started actually doing some chiropractic adjustments. John seems to really like this, but it is not affecting his seizure control at all.

John finally got evaluated by the early intervention program in January. He doesn't understand much of anything, so he couldn't follow any of their directions. He scored in the lowest 1% in all areas, including motor skills (which I don't think is right). They rated his cognitive age at around 15 months. That was no surprise at all, but still hard to hear.
A week later, two therapists came to our house and observed him more closely and created an ISFP (schedule of therapy). This will only last until he is 3, at which time the school district takes over. These ladies agreed that John's motor skills, while somewhat delayed, are not really of any worry. They got John enrolled in a weekly 1 hour pre-school class, and scheduled a couple of in-home therapy visits.

John's constipation continued to get better in January. I just think it takes a long time to undo the damage that was done. We're definately on the right track now.

On January 30, John went to a very restrictive 4:1 diet ratio. He gets only about 9g of carbs per day now. Since he is now drug-free and at a high ratio, this is our best and last chance at having the diet do its magic. I'm monitoring his blood ketone and blood glucose levels very carefully now. The goal is to get his ketones consistenly above 5, and his glucose down around 65.