John continues to have longer seizures on most days, but we haven't seen any over 10-15 seconds since last week.
He had a great Christmas Eve with no longer seizures at all. All of the excitement of Christmas led to 3 longer seizures, though.
I guess we're getting used to them now. And, it's a big relief that they haven't progressed to the point they were last year. So, far he has been able to bring himself out of them within 20 seconds. Or, maybe the VNS magnet is helping to bring him out of them.
We think John is doing better cognitively. He's still not communicating much, but it appears that he is understanding more and more. I also witnessed him sitting down and turning the pages of his book for probably 5 minutes. For a kid that usually can't concentrate for 5 seconds, this seemed like a big step. This could be because of the increase in Felbatol or the removal of the Lamictal. As long as the seizures don't get worse, we're not going to reintroduce the Lamictal. We'll trade seizures for development, up to a certain point.
We're scheduled to increase the Felbatol again next week. Hopefully, we'll see even better things with that.

Santa brought John a bag of 100 balls, which he was really excited about, though he seems to have gone back to his old set of 5 or 6 balls for the most part. Not sure why that is. Santa also brought the kids a big realistic remote-controlled dinosaur. We were worried that it might scare John, but he pets it just like a cat.

The battery was fine. So, the increase in seizure activity means something else is going on.
We asked the doctor if maybe John just needed a low dose of Lamictal to control the longer convulsive seizures. Even though it is not considered therapeutic, he says that he sees cases all the time where a low dose of Lamictal helps kids. So, we may end up going back on a low dose of Lamictal at some point. Before we go there, though, we want to give Felbatol a shot at a higher dose, and then try playing with the VNS settings to see if we can get better control.
We increased his Felbatol dose from 6ml/day to 7ml/day a couple of days ago. We'll see in the next 4-5 days if this has any effect.
The doctor also said that since the VNS doesn't seem to have any adverse effects at all at the current setting, that we can certainly try some stronger settings with that. He was ready to update the VNS settings yesterday, but we wanted to hold off since we had just increased his med doseage. We did increase his magnet ampage to 2.5mA, though. Even at this level, it doesn't seem to bother John at all.

John had 3 longer seizures yesterday. Still only about 5-8 seconds each, but with convulsions. The good news is that the seizure last night stopped immediately with the VNS magnet swipe. Maybe the VNS still offers us some hope!
As of 11:30 this morning, I've seen maybe 10 small "normal" seizures, but no larger ones. That is good news, as we've been seeing a larger one almost every morning lately.

Well, John has continued to have lots of little seizures, and at least 1 larger seizure in the morning. This morning he had a 15-20 second seizure that really scared us (and him). This was his longest seizure in a year and a half. His eyes were rolled back in his head, he turned pale, and was convulsing. Maya even offered to call 911. What a good sister! The magnet didn't seem to help. But, thankfully he came out of it on his own. So, we're back to close monitoring of him, and keeping the magnet, diastat, and stopwatch close by.
Over the last couple of days, we have noticed that the magnet doesn't seem to stop the clusters as it used to, and it didn't seem to have any effect on this bigger seizure. I have tried to make him vocalize after swiping the magnet to see if we could get some indication that it is working. We just can't. The truth is, we have never been able to tell when it was on. But, I also know based on the charts that John's battery could die any day. We're crossing our fingers that it is now dead and this is why his seizures have gotten worse. We were able to get a quick appt. to check the battery tomorrow morning, and I'll update after that.
In the meantime, we are increasing his Felbatol again starting tonight.

John's seizures have continued to get worse. Yesterday he had two longer seizures in the morning that scared me enough that I took the day off work. Most of his seizures are still short, though he routinely has 80+ a day now that we see. So, we needed to make a change. I called the neurologist and we got the OK to increase his Felbatol dose. He was taking 5.5ml/day, and we increased that to 6ml/day. It's not much of an increase, but John didn't have any of the large seizures this morning so maybe it's helping. After 2 weeks, we can raise it to 8ml/day. That would be a big jump, and probably his max doseage of this med. We really hate increasing his meds, but he just wasn't doing very well and we can't ignore that.

We went to a meeting the other day about his transistion in to kindergarten next year. We didn't learn too much. He'll obviously be in a "self-contained" classroom, and we won't know where that is until next year. Yoshie is considering home-schooling John next year, but I think we'll wait to see what they offer before we make any decisions.

John also got his speech evaluation the other day at the therapy place. They thought he was a delayed 2 year old. Imagine their surprise when they found out he was 4.5! We already know it, but I think even the therapists are a bit taken back by the severity of his delays, especially since he looks like a normal kid. They were really surprised to hear of our trouble with getting adequate speech services through the county. But, they also said we'll likely get a lot more next year when he is school age. In any case, John was too delayed to even do any of the tests. (ie. He can't point to a kitty, or a ball when asked). But, she was very good and saw some potential in John. We'll be starting to take John to see her and the OT once a week pretty soon.

We are still continuing with the stringent diet for now, and we have just added some more supplements to the mix. We are also continuing with the herbal mix. The herbalist is trying everything she can think of and calls us frequently to assess how things are going. She suggested that we might want to go to China for more advice, but I don't think we'll be doing that. :)

John seems to be understanding and vocalizing a little better this week, but the seizures are getting worse again. Both the number and strength of the seizures has been getting worse since my last post. We're not sure what to do about it. We don't want to return to the Lamictal. For now, we are just waiting this out and hoping it gets better. If it gets any worse, we will have to do something, though. He's close to falling with some of the seizures again, and we definately don't want to go back there again.

We went to an evaluation at a private therapy place. The lady that evaluated him was very good, but she was an occupational therapist. We're going back for another evaluation with the speech therapist next week. It seemed like a nice place and I hope it works out.

We got the Santa visit out of the way early this year. John still doesn't know Santa from any other person, and it's pretty tough to get him to sit for 1 second to get a picture. Yoshie sits him there and darts away and hopes that he makes some expression that is acceptable. It looks like he's smiling here, though it was really a whining face.

There is an interesting show airing on PBS that talks about epilepsy. We watched it last night and it covers some of the treatments that we have tried (VNS, keto diet, drugs). You can see it online if you have a fast connection:

http://www.epilepsy.com/media/HBHMHQ.asx

101 posts

Wow, I can't believe I've posted 101 times already. I should probably figure out a way to back this stuff up!

Anyway, John has been off the Lamictal for over a week now. Things got worse for the first week, culminating in a day of over 100 small seizures. Then, he got better again and is back to 20-40 small seizures a day now, and some moments where he looks a little lost. These seizures are small and would probably be missed by most poeple. Hopefully he will continue to get better. I think it was a good choice to get rid of the Lamictal. Even if his seizure count might be slightly higher, it's not enough to make the drug side-effects worth it.
If a drug completely eliminated his seizures, we would be willing to live with almost any side-effects as the brain might be able to heal. As it is, I question whether he should remain on any drug if it doesn't stop his seizures completely.

We talked to the herbalist about the tropic acid thing, and she did the research and doesn't think the herbs are causing this. She's really "excited" about it though, as she thinks it might be a key.
We have an appt. with the naturopath later this week and I guess we'll come up with some plan at that time. I'm also going to see if our neurologist has any ideas.

Grandma made a gluten and dairy free Thanksgiving dinner for John, so he was able to share in the family meal. He's such a good eater, that he scarfed down pretty much everything. I'd post a picture, but I think we forgot to take any!

Cyberonics

Some interesting news regarding Cyberonics over the past week. Cyberonics is the company that makes the VNS.
First, billionaire Carl Icahn purchased some stock in the company and led to speculation that he would try to force a shakeup in management. This led the stock to climb 20%.
Just 2 days later, the CEO of the company quits after it was revealed that they were likely unfairly timing their stock option purchases. This was followed on Sunday by the resignation of the CFO.

I don't know what to think about this. I always thought that Cyberonics was a little shady after the way they seemed to hide some of the serious side effects of the VNS, claiming they didn't track the patients that were using it outside of FDA approval (ie. all kids under 12!).
Still, I think it was the CEO's cavalier attitude that got the product to where it is. The VNS worked for John, there is no doubt about it. I'd pay the CEO out of my own pocket if I could. But, cheating the system and getting rich off of a money-losing company is simply unethical.

It looks like this action has actually helped the stock. I can only imagine that it will be good for the future of the company. I really hope that a competing company (ie Medtronics) will buy Cyberonics and they can combine their expertise to make a better product.
I'd like to see:
1) a reliable battery life indicator. Right now it will tell you if it's near end of service only.
2) A rechargeable battery that could be recharged through the skin. My toothbrush recharges wirelessly, why can't the VNS do the same?
3) A less-permanent way of attaching the leads to the nerve, so it could be removed more easily if needed.
4) More data on what settings should be tried. It appears to be little more than a guess right now.
5) Programmable via a phone. I worked for a pacemaker company almost a decade ago and we already had this technology. Doctors could interrogate and program the pacemaker through the phoneline from anywhere. It's ridiculous to have to go to a doctors office just to do this, especially if no doctors in your area are qualified.
6) In the future, it also should be able to sense when a seizure is starting and turn on only at that time. It seems so low tech to just have it go on and off 24 hours a day. Other companies are working on this, and I think we'll see it before too long, especially if the right mergers take place in the near future.

Done with Lamictal

We continued to lower John's Lamictal, to the point that his last dose was Friday night. He is suffering some withdrawal symptoms, including stronger and more numerous seizures. We're crossing our fingers that this will subside over the next couple of weeks. He seems ridiculously happy the last couple of days, though, so it's a good trade-off as far as I'm concerned.

John's latest ferritin level came back at 36, which is much better than before but still on the low side. We went through his seizure journal and it looks like his seizures started getting worse when we started giving him an iron supplement. So, we stopped giving him the iron supplement. The seizure count has remained high, so we might have to start him back on the iron supplement soon. It didn't seem likely that an iron supplement could cause more seizures, but you just never know.

John has now gone to his preschool twice without Yoshie. They say he did fine. That's good news. We have no idea what they teach him there, but the fact that he didn't scream the whole time is great. We also have an appt. next week to meet with another special-needs preschool.

John's second attempt at the organic acid test also failed. His tropic acid level was too high. The lady at the lab called the maker of John's seizure meds to see if they might be causing this, but they definately aren't. She then called other labs that do organic acid testing to see if they had ever run across elevated tropic acid levels. Well, no-one has ever seen this, except when certain meds are being taken. They wanted to make sure that no-one was "sneaking" meds to John, as they didn't have any other explanation. That's ridiculous, of course. So, we have something to pursue again. I suspect it might be something in his Chinese herb concoction. I sort of hope not, though, as a result like this might be a crucial key to figuring out what John's underlying problem is. To us, it still seems like some metabolic problem. All these things must mean something:
1) Very low ferritin levels, despite getting adequate iron in his diet.
2) An IgG reading of zero.
3) Elevated tropic acid level, which no-one seems to be able to explain.
4) The fact that AED drugs and the keto diet seem to be completely useless against his seizures.

After our scare a couple of weeks ago with the worsening seizures, things started to get better again. Whew! He's now back to having 10-20 seizures a day, and maybe a little smaller again. No more signs of anything like a drop.
Somehow, we totally forgot both his Lamictal and Felbatol last Friday night. Strangely enough, he slept better that night and had a good day on Saturday. This has inspired us to start lowering his Lamictal again, which we did last Saturday. He is now only taking 25mg/day. Hopefully he can be completely off of it in a few weeks.

John got his ferritin level checked again today. We'll get results next week. Hopefully his levels are better. I think we'll have to monitor this for awhile, as we still don't have a good reason as to why his level was so low.

We made the decision to take John out of his preschool class. It was just too much for him. We are now looking to get him enrolled in another special needs class, as well as potentially starting music therapy. Yoshie has also started doing multiple therapy sessions with him daily. He's up to 60 minutes at a time now!

We did have another meeting with EI, which was attended by 7 or 8 people (not including us). The meetings seem to grow each time. John will be getting a 1 on 1 aid starting next week. It's only for 1 month, but that is a good start. Yoshie will be leaving him at the door and won't return until class is over, at least that is the plan. They know that John will likely cry the whole time, so we talked about ways to prevent that. I'm sure the first week will be tough, but hopefully he will adapt quickly.

Unfortunately, after being almost perfectly potty trained for a few months, John has been having frequent accidents over the last couple of days, even at night. I'm not sure what is causing this, but I don't think it's reason for worry unless it persists. It could be another withdrawal symptom from lowering the Lamictal.

John's seizures have continued to increase in number since my last post. They have also increased in intensity again. He has had many days of 30+ seizures again, with some seizures back to lasting a couple of seconds. Yoshie thinks he may have also had a couple of drop seizures yesterday, though she isn't 100% sure. I can't imagine making him wear the helmet again, so hopefully these incidents were nothing. We haven't changed anything, and we've even gone back to the herbal formula that he was on a few weeks ago when things were going so well. His good and bad stretches once again appear to be completely random. He does have a bit of a cold now, and that could well be the culprit this time.

John has remained on 37.5mg Lamictal and 5.5ml of Felbatol for quite awhile now. We were hoping to further reduce his Lamictal but we're not going to do it when things are going backwards. John has also remained on a gluten-free, dairy-free, and limited sugar diet. This may have helped his stomach issues (as he no longer has issues!), but sure doesn't appear to help the seizures.

Yoshie is continuing to do a lot of therapy with John, with the guidance of our ABA therapist. She is now doing two 50 minute sessions per day. Most days, John does pretty well with this. He is still making progress, albeit at a very slow pace.

The naturopath had us do an organic acid test. So, John had to further limit his diet for 48 hours, and we sent the test off. There was some acid that came in outside of the normal boundaries and would be very unusual if true. To verify this, we have to re-do the test, which means he's back on the very stringent diet for the next couple of days. I suspect the herbs are messing with the test results.
John is still taking an iron supplement. We'll get his ferritin level checked again next week. Hopefully we can get that back in the normal range.

John has continued to go to his preschool and his Early Intervention class, both with mixed results. John has a hard time with "circle time" especially. Yoshie continues to accompany him to both classes, though we're still hoping to begin to phase her out with time. We've had a couple of meetings with the EI team. The first one resulted in a Psychologist monitoring John in several scenarios: home, EI, and preschool. The next meeting she presented her report, which basically recommended that John remain in his current setting, with the goal of getting Yoshie phased out. We requested a 1 on 1 aid again, and hopefully that will come through - though I doubt it. We also are getting a recommendation to be evaluated by the autism program. Some of the EI specialists don't think this is a good idea, because it's really intense and they think it would be too much for John. What we argue is that those kids get exponentially more services than John, including a daily speech therapist. We were told again that 15 minutes/month of speech therapy is a lot in John's case. In any case, we feel that it doesn't hurt to try. If it's too much, we'll take him out.
We have another meeting with EI next week.

We did get out trick or treating on Halloween. John wasn't very interested, of course. He just doesn't understand it. He was mostly interested in picking up barkdust from people's yards and throwing any ball he could find. He was a furry monster, which was a good choice since it was really cold that night! (click below for some halloween pics!)

John1

Since my last post, John went 10 days where we only saw 2 small seizures! That was really amazing. The seizures did start slowly coming back after that, though, and we haven't seen any more seizure-free days since. I still think the seizures are gradually weakening. I don't know what these seizures are officially called anymore (based on the EEG), but I think most people would now consider these to be absence seizures. It's more like he is zoning out for a few seconds. You can tell he's having a seizure if you look at his eyes, but his head rarely moves anymore, and he recovers quickly from all of them.
We have continued to lower John's Lamictal. I think we do see an increase in seizures and behavior problems with each reduction, but it seems to level out after about 10 days. Unless we see some change, I think we'll continue to try to reduce the Lamictal.

We have continued to see the herbalist every week. She is still changing his formula around. She is trying to address his stomach issues as well as the seizures themselves. John has accepted the herbs and takes them without problem now. This stuff has a really strong (disgusting!) flavor, so I'm amazed that he takes it without complaining.

We have also been to the Naturopath a couple of times now. He had John take a food sensitivities test. That test came back showing that John has a medium to strong reaction to dairy, wheat, and gluten, among other things. He recommended that we remove these things from John's diet for a couple of months to see if it helps. As much as we hate to continue to limit John's diet, we want to do everything we can to help so he is again on a pretty restrictive diet (though nothing like keto!). Thankfully we have some excellent stores around here that have tons of gluten and dairy free products, so he's eating well.
The Naturopath also recommended that we get his thyroid and ferritin levels checked, so we did that at the same time as his normal blood test. The thyroid tests haven't all been returned yet, but the ones we have showed no problems. The ferritin was super low (12, I believe). This means that something isn't right. He's either not getting enough iron in his diet, has chronic GI bleeding, or there is something else going on causing the low level. Low ferritin (or iron) levels have a direct correlation to learning disorders, ADHD, and hyperactivity. Hmmm, sounds like John! So, John is on an iron supplement now as well. We'll get that level rechecked in a couple of weeks. Glad we found it, and I question why he was never checked for this in the past.

looking good

John has really had an exceptional week from a seizure standpoint. There were 3 days in the last week where we didn't see a single seizure. And, we only saw 2-3 small seizures on the other days. We do see some periods that we think are absence seizures, but something has definately changed. We can no longer consider this a fluke.
We lowered John's Lamictal 1 week ago, and I suppose this may have helped him. Or, it could really be the Chinese herbs, though I am such a skeptic that I have a hard time admitting that. The herbalist looked me straight in the eyes and told me that he will improve, and I just chuckled. But, it really happened. I still think it's probably the lowering of Lamictal that is helping, but if you look at the timing of things, his improvement coincides more with his herbal treatment than the drug reduction. In any case, I can't see stopping the herbs any time soon.

John has been incredibly hyperactive the whole week. There were a couple of days where it was simply unreal. It was like he was posessed. He would run and jump and just act crazy non-stop. His heart would be racing and he would be out of breath but he would just keep going. It was somewhat scary actually. Thankfully, he appears to be slowly getting better with each day. I assume this is withdrawal from the Lamictal, in which case we're a little scared to make another reduction so soon. It also could just be a reaction to having less seizures. I've heard of kids that go seizure free, and are over-active for up to 6 weeks after that.
His behavior has also been bad, and he's back to going limp every time he doesn't get his way. Yoshie has referred to this as "the octopus". For example, when it is time for circle time at school and John wants to play in the water, he will go limp and start screaming. Yoshie took a video of it, and it was quite surprising. We'll be working on this during his behavior therapy sessions now.
We had a meeting with his Early Intervention teachers last week, as things just aren't working out in his current setting - he cries the whole time. So, a psychologist is now going to observe John at home, at preschool, and at his EI class and make a recommendation for his services. It might end up being a 1 on 1 therapy at school or at home, or having an aide with him at his preschool, or something else. In the meantime, Yoshie is staying with John the whole time both at EI and at preschool. This isn't a long-term solution, as John needs to learn to handle the classes on his own (and Yoshie needs a break!). But, for now its better than having him sit in his stroller and cry for the entire class.
We're scheduled to take another 1/2 pill out today. We haven't decided if we will actually do it or not. When things are going well, I don't want to change anything. But, maybe the lowering of Lamictal is helping and it will be even better if we get rid of it completely. How can we know for sure?

no seizures?

For the first time in over a year, we did not see a single seizure today! I'm pretty sure he probably had some, but we said a long time ago that we only count the ones we see. We're desperately hoping it is the beginning of something good, and not just the calm before the storm.
His behavior was quite bad today, and he didn't do so well at preschool. That is expected, since we lowered his Lamictal doseage, though usually it takes more than a day or two to see the fallout.
Tonight, his spirits changed almost instantly and he was in a great mood again. He's such a mystery.

So, the only 2 things that we can think of that we have changed are:
- The herbs
- the lowered Lamictal.

I don't really believe either of these could account for having a seizure free day, but I don't have any other explanation. We're just hoping it continues.

Doctor Visit

We joked going into the doctor that we already knew exactly what he was going to recommend. We've been doing this long enough that we really can guess what the course of action will be. If we could just write prescriptions and program the VNS, we probably wouldn't even need a neurologist.
We guessed right on again, which was good news. We are going to lower his Lamictal fairly quickly until it is gone. This is assuming that we don't see any fallout. Then, we will raise his Felbatol as far as 60mg/kg, which is 25% more than he is taking now. After that, he recommended simply keeping with the Felbatol monotherapy. He said that there were a lot of other drugs we could try, but they all come with serious side effects. Since John is doing so well these days, he didn't feel it was worth the risk to try anything new, especially since there is little chance of anything working.
This doctor had obviously studied John's files carefully before we met. This is the first time that a doctor has taken the time to truly go over everything. Some points:
- John's EEG definately shows generalized seizures only. There is no hint of a partial onset, which destroys any hope we had for surgery.
- John's latest MRI was compared with his earlier ones and his brain looks "beautiful". There has been no shrinkage, and the two sides are also the same size. He said it's pretty common in kids like John for there to be shrinkage in the brain, either from the underlying cause or from the meds. It is VERY good that John's brain still looks good.
- John's VNS is still looking good. We expected the battery to be dead by now, but it's still going strong.
After looking at everything, he said that he thought John's seizures would change for the better with time, and that he could potentially grow out of them. We've always held out some hope, based on stories from other parents, but we've never heard a doctor tell us this. In fact, the predictions when we've pressured them have always been pretty bleak. It came as such a shock to hear him say that, that I still don't fully believe it.

Here are the answers to some other questions that we asked:
- If you recall, John had a test for celiac disease last year. This test showed that he had zero IgA. They brushed it off back then, but we brought it up again. This doctor also said that there was no link to IgA deficiency and seizures, and that kids that have immune system problems are always sick, which isn't the case with John. He recommended that we dismiss this.
- We asked about the frequency of blood tests, since most kids on Felbatol get weekly or biweekly blood tests. He insisted that John only needs a test every 3 months, and will go to every 6 months after awhile.
- Yoshie asked about IVIG as a treatment. He said that they had tried it with some kids, but that John just didn't fit the seizure type for that sort of treatment.
- We asked about new technologies that we've read about. He knew everything about all of them, which was great to hear. John isn't a candidate for any, but it's nice knowing his doctor is up on these studies.
I'm sure there is more, but that is all I can remember right now.

We told him about the herbalist and naturopath that we are seeing and he was all for that. He said we could send him a list of everything that John is taking so they could check for any drug interactions. He even added thyroid tests to John's lab slip, as the naturopath wanted that information.
I've said it before, but I really believe we've ended up with the best neurologist around. As an added bonus, John really likes him. I also believe we have the best naturopath and herbalist in town.

A lot has happened...

Sorry for the long delay in updating this site. We have tried a lot of things in the last month, with some things looking promising. So far no improvement in his seizure count, though.
First of all, his blood results came back fine. His Lamictal level was low. We of course already knew this because we have been lowering his dose for some time. It hasn't been at a therapeutic level in months. The Felbatol level was definately therapeutic, but there is a chance we can go a little higher.
We lowered his Lamictal another half pill during a week nothing else was going on. He is now on 75mg/day. Again, nothing seemed to change with this reduction, aside from a couple of days of him just not feeling quite right.
We've now been to the Chinese herbalist 4 times. She has given him a concoction each week, trying to address his sleeping issues, constipation, and the healing of his brain. The constipation thing worked at first, but did not work the next time we tried it. John is also sleeping OK now. I don't "think" that is related to the herbs, since he is no longer getting that combo of herbs and his sleep remains fine. The big problem is that the stuff tastes disgusting, and it is getting harder and harder to get it into him. We're going to continue for awhile longer, but not indefinately unless we see some improvement.
We also went to see our old Naturopath earlier this week. He is a good guy, and has a very sensical approach. He told us to simply give John 2000mg of vitamin C a day to take care of his constipation. It worked after 1 day. That sure is easier and cheaper than the $70/week for herbs! John got an allergy test and will be getting an organic acids test through him pretty soon. We are waiting to get the results from these tests before continuing with any treatments.
We are going to see John's neurologist again next week. He said he wanted time to look over all of John's records and he set up a 1 hour appointment. Hopefully something good will come from that.

Yoshie has been continuing with John's daily speech therapy. He sits for 45 minutes at a time now, and seems to really enjoy it. If you say, "What is your name?", he now answers with a quiet "juh". It's a start!!
John started his preschool last week. This is a normal preschool, and John is in the 3 year old class (he is 4). He's still by far the slowest in the class, of course. Yoshie stays with him. He's been to 2 classes so far, and so far so good. I think he can really benefit from this environment if we do it just right.
His preschool is in the afternoon, so we had to switch his early intervention services to a morning class. That has just been terrible. He hates it there, and lets them know it by crying non-stop the entire time he is there. It's a no-win situation for everyone. They called us and want to set up a meeting because they are "very concerned" with John. I don't think they believe us when we tell them that John is a very happy guy who almost never cries. The fact is that he hates the school. That meeting is next week. Hopefully they will suggest sending someone to our house for therapy. If not, we may be forced to give up on that program completely. So much for "no child left behind".
The other big news around here is that I think it's safe to finally declare that John is potty-trained! Even at night! He still makes the occasional mistake, but it's getting more and more rare. He hasn't had to wear a diaper for a couple of weeks now.

I guess that's it for now. I will try to post some new pictures soon.

More Felbatol, Less Lamictal

We did increase John's Felbatol right after my last post. He is currently at 660mg/day, which is right near his maximum limit. He's been at that dose for 2 weeks now, and we haven't seen any noticeable improvement. He's still having a dozen seizures a day that we see.
He went in today to get a blood draw to determine his Felbatol and Lamictal levels, and to make sure everything else is OK. Normally with Felbatol, you have to get blood tests done every week or two. I think the doctors overlooked this, as we had to ask for this test. There still is no mention of ongoing blood tests, so maybe he was just waiting to see if it was going to work before setting up our routine blood tests.
Since we have to wait to get the blood test results back before doing anything with the Felbatol, we thought we'd take this opportunity to lower his Lamictal a bit. So, we took out half a pill at night, which leaves him at 87.5mg/day. I suspect the doctor will want to quickly get rid of the Felbatol and start a new drug, but I hate leaving John on the Lamictal when it doesn't seem to help him. So, we'll keep taking little bits out when we can. We always try to avoid doing more than 1 thing at a time, and we never make more than one doseage change of any med in a 2 week period. So, it's a long process.
We never really had much hope for the Felbatol, but it is one of the "big guns" in the seizure world, so we don't expect anything to work now. We certainly will keep on trying, but with each medicine comes less and less hope. That doesn't mean we're done fighting, though. We just made an appointment with the naturalpath that we saw last year. And, we're meeting with a well known accupuncturist/chinese doctor this weekend. We're not looking for cures at this point, but if either of these alternative doctors can help John to sleep better or releive his stomach issues, I think the end result will be less seizures.
John continues to learn new things. He actually understands what "more" means now, and can use it in 2 word sentences if he wants something - "more bagel", or "more cookie". We're trying to focus on English with John, but tonight he came to me, pointed at his hand and said "Koko itai", which is Japanese for "It hurts right here". I think that is it for his ability to use 2 words together right now. But, it's still a big improvement.

MRI

I guess getting an appointment for an MRI is nothing like getting an appointment to see the neurologist. The neurologist has a 5 month waiting list! The MRI took only 2 days. So, John had his MRI on Friday. I guess it all went OK, but giving your kid general anesthesia is always tough for some reason. He screamed like never before when they had to put the stuff in his nose. But, everything else went smoothly. We were worried about doing the MRI with his VNS, since there are lots of things that can go wrong if done incorrectly. It made me more worried when they left a message telling us how they knew John was on the keto diet and they were prepared for that. Huh? John has been on the keto diet for over a year. They didn't even mention the VNS, so I called to make sure they had everything straight. They did, thankfully. She even read the MRI "order" to me, as I knew what settings were OK. Still, I brought the FDA warning letter and the VNS physician manual with me to make sure they had it right. It was all unnecessary of course - they knew what they were doing.
The MRI only took 45 minutes, and John was already up when we went back to his room. He had to get an IV just to get him hydrated, then he proved that he could eat and drink so we were allowed to go home. John took a long nap, as is usual after general anesthesia. After waking up, he couldn't stand for awhile and he didn't understand why. He kept trying to get up, but couldn't put any weight on his legs. He regained his strength pretty quickly, but didn't have very good balance for the remainder of the day. It was quite a chore to keep him safe.
I already got the results of his MRI - normal. I think that is good news, though in some ways it would be nice to see something that would give us a clue as to what is going on. Here was the report:

-------------------
The myelination pattern is normal. There is good gray white matter differentiation. No intra-axial or extra-axial fluid collections are present. There is no evidence of cortical dysplasia, or migrational abnormality and the medial temporal lobes are symmetric without abnormal signal. There is no mass effect or midline shift. The ventricals are normal size.
Impression: Unremarkable MRI of the brain.
-------------------

Today marks 2 weeks that John has been at 480mg of Felbatol. So, we're waiting for the OK to increase his dose again. He can go up to about 675mg day. Since it doesn't appear to be doing anything at this level, I don't really expect it to suddenly start working at a higher level, but you never know.

EEG results

I received the EEG results on Tuesday. We knew the EEG was bad, but we were really hoping the background activity was improved or there was a chance of a focal point or something. Unfortunately, the EEG was very bad again. The report had some inaccuracies in it. For example it talked about his seizure types as "drop attacks" and "generalized shaking spells". I wouldn't describe his seizures like that at all. He hasn't had a drop attack in over a year. I'm not sure where they came up with that, as that is not how we described his seizures. It also talks about what was happening as he was getting drowsy. Since he was asleep when the recording started, I don't know what they are talking about here. Surely he was already asleep during the period that the EEG states "he was getting drowsy". There was a camera on him the whole time, so I'm not sure where they came up with this either.
The final "impression" was:
----------------------------
Abnormal EEG due to:
1. Diffuse slowing and disorganization of the background.
2. Multifocal spikes and sharp waves.
3. Bursts of irregularly generalized spike and poly spike, and slow-wave discharge with a 1.5 to 2 Hz frequency occurring primarily during sleep.

Clinical Co-relation: These findings suggest moderate to severe bihemispheric dysfunction with a lowered seizure threshold. These findings would be consistent with a multiple or potentially irregularly generalized mechanism of onset for the patient's seizure disorder. The slow-spike wave activity is suggestive of Lennox-Gastaut syndrome, and clinical co-relation is recommended.
----------------------------

The last sentence was the killer for me. Lennox-Gastaut is really the last thing we wanted to hear. We want to believe he will get better, instead of a slow decline as is usual with LGS.
That being said, this is based on the EEG alone, and I don't think anyone who has seen John over the last 2 years would say he is getting worse. He is definitely better than he was and he is improving. He doesn't have tonic seizures, which are almost always a part of LGS. And, physically, he seems almost fine. Maybe it's just wishful thinking on our part, but I'm still not convinced that John has LGS.

In a lot of ways, I wish we wouldn't have done this EEG. It has scared us, and it doesn't change anything as far as his treatment. They want him to get an MRI, and I know he should since he hasn't had one in over 2 years. But, I haven't made the appt. yet. I hate making him go through that again (general anethesia, etc.) if it won't change anything.

EEG

John had another EEG the other day. This one was a sleep deprived EEG, which means John could only sleep from 11:30pm to 4:30am. Yoshie took the night shift and kept him up until 11:30 by playing outside well after dark. I woke John up at 4:30 and we played all sorts of games to keep him awake. The hardest part was the car ride to the hospital, as he normally would fall asleep in this situation. Once we got in the EEG room, we had to wrap John up so that he couldn't grab the wires. Of course he cried the whole time that the wires were being stuck on his head. We were also incorrectly told that he couldn't eat or drink anything after 7am. I'm sure that added to his frustration.

John actually ended up crying himself to sleep before the test even started which was good. We watched his sleep EEG and it was obvious to everyone that it wasn't good. He was having discharges every 5-15 seconds. We watched for a long time and never did see a 20 second span without a discharge. The discharges were about 1 second long, and we couldn't see any movement in John that correlated to the discharges. It's quite obvious why John has his developmental delays. It's sort of miraculous that he does as well as he does.
We woke him up, and of course he didn't like being all wrapped up so he cried and tried to escape. At this point, I couldn't tell what was happening with the EEG as it just looked all over the place due to his moving. We'll have to wait for the report on that.

We increased John's Felbatol to 3mg/day about a week ago. So far we haven't seen any noticeable change in him at all - either good or bad. I guess we'll have to increase again next week.

Another try with Felbatol

Last time we tried Felbatol, John vomited after most of the doses. So, he was only on it for about 3 weeks total and we never gave it a fair trial. At that time, John was also on the keto diet so we were forced to use the pills. We're going to give it another shot, this time with the liquid, and with a slower titration.
We started it last Tuesday evening. So far, he is taking just .5ml 3 times a day (187mg/day). So far we haven't really seen anything - good or bad. The changes are subtle, so we're not sure of anything, but we think he might be slightly more hyper (just what we need. :) ) Also, his head drops might have slightly decreased in number, but we have seen him have a little longer shaking seizures each of the last couple of mornings. So, we'll just continue onward until we see improvement or side-effects. The next increase is scheduled for tomorrow.

New neurologist

We finally got in to see John's new neurologist. This was at a OHSU, so we first were seen by a couple of the residents. Since this was the first time for John to be seen here, we had to give the whole history again. Once the actual neurologist came in, it was obvious that he was very busy. I think they are way overbooked and trying to fit in too many patients. We had lots of questions, and wanted the VNS checked, etc. so we probably took more than our alotted time. He seemed like a good doctor, and was open to everything we talked about. His main point after looking over all of our records was that John has had excellent care and he had agreed with everything that we had tried.
We asked how he would classify John's condition and he said probably Lennox-Gastaut or maybe MAE, but that there was so much variance in those syndromes that classifying wasn't important. I told him it was sort of important for us since MAE kids usually grow out of the condition and LGS kids generally deteriorate. But, his point was that John didn't fit nicely into any syndrome and it wouldn't change his treatment so we really shouldn't worry about it. I will pursue this further, as I think there ARE differences in the way those syndromes are treated.
His recommendation was to try felbatol again, but in liquid form this time. John tried it for a few weeks last year and vomited after most doses and it never seemed to do anything for the seizures. He also suggested another benzo, which we are not interested in. So, we agreed to the felbatol. We got the dosing schedule which is starting him on a very small dose and increasing very gradually. John will also remain on his 100mg/day of Lamictal.
We also had the VNS interrogated and it checked out fine. We're all a little surprised that it is still going strong, but definately not complaining. We were expecting to have to have the generator replaced this year because the battery should be wearing out.
We also scheduled an EEG for July 13, and will schedule another MRI soon after that.
Yoshie asked if it was OK for John to fly on an airplane and he said it was. I'm not sure the other passengers would like that answer, as I think John would cause quite a commotion on an airplane. :)
We also mentioned the high aluminum that had been found with a hair analysis. He said he had never heard of high aluminum causing seizures so that was basically brushed off.
Finally, we asked about John's absence of IgA when he was tested for celiac last year during his terrible constipation issues. He suggested that we follow up on that and have John re-tested now that he isn't on keto anymore. He was going to give us some references for GI doctors but failed to do so.

Happy 4th birthday!

John turned 4 years old on June 13th. We celebrated with a family party. Yoshie made him sushi, which is one of his favorite foods. And, he had more than his share of cake. He still doesn't understand the idea of presents, so Maya and his cousin Sam helped him to open them. As we've seen with every holiday, he doesn't seem to care too much about the presents until after everyone has gone home. He got lots of hands-on toys, which he has been playing with all week. And, he got a toy that you hook up to a garden hose and it explodes like a volcano every few seconds. The kids had a great time getting soaked.
As I'm sure all parents of special needs kids can relate, birthdays are sort of depressing in some ways, as it's just another year that your kid is delayed. John didn't meet any of the development goals that we had for him this year. But, he is as happy as can be and is making progress these days so we must celebrate what he has achieved. We must not forget how bad things used to be and how far he has come.
As we've come to expect, the fallout from all the cake hit him over the next day or two with a noticeable increase in seizures. There is a fine line between letting him enjoy just being a kid, and keeping the seizures under control. 

Therapy

We had our yearly meeting with the county to formulate a plan for John's schooling. This time we brought our case worker just in case she could offer any advice. John was in a horrible mood so Yoshie and I had to take turns listening to the meeting and entertaining John.
Everyone is very nice, but they only have so much money to work with so it's a bit of a struggle to get all of the services that you think your child deserves. This time, we had learned that kids with autism were receiving far more aid than John had been getting. So, we were hoping to fight for equal services as the autistic kids. Turns out that it really isn't an option.
We had to go through all of John's goals for the previous year. He hadn't met many of his goals at all, so a lot of them just got carried over to this year. We did get rid of the 1 on 1 nurse, as that was simply overkill and unneeded at this point. In a perfect world, we would trade the nurse for a 1 on 1 aide or speech therapist. Of course, it doesn't work that way. When Yoshie told them 15 minutes a week of speech was highly inadequate, we were informed that this is actually a LOT. When we pressed them on why the autistic kids got more than this, they admitted it all had to do with funding. I said that we could get John an autistic label if it would help, but they convinced me that this probably wouldn't be a good class for John. A lot of their curriculum wouldn't apply to him, and I doubt he'd be able to thrive in a structured atmosphere like that anyway. In any case, an autism label from a doctor wouldn't make any difference, as the county does their own analysis and they've already said John wouldn't qualify. Our case worker told us later that we should avoid an autism label anyway if at all possible for insurance reasons.
In the end, I think everyone agreed that we should pursue more private speech therapy, especially since my insurance will cover a lot of it. Some didn't think John could handle it, but we know better. They still haven't seen John's potential because he isn't on his best behaviour at school. Their point was that we need to keep bringing John to the school so that he becomes comfortable there. I think it is a valid argument.
So, we ended up keeping John in the same class which he will attend twice a week for 2 hours.
Yoshie asked them to videotape the class and give us copies of the work that they do so that we can extend their teachings at home.
We made sure that they knew what to do in case of a big seizure. They did. And, we made sure that we could re-visit his therapy options if his conditions change at all. Legally, we have the right to request a meeting at any time.

2 year anniversary

It's now been over two years since John's seizures started. It's been a long two years for sure. It's very frustrating that he continues to have many daily seizures after this long. And, he hasn't progressed much cognitively over that time either, though some progress has been made. But, all you have to do is take a look at his 1 year anniversary posting to see that he is doing much, much better now than he was 1 year ago. We are very thankful for that.

While technically John did have a couple of Grand Mal seizures in the last year, they were last June. So John hasn't had a major seizure in almost a year now. No Grand Mals, and no drop seizures. He hasn't had to wear his helmet since last June, either. The therapists agree that he doesn't need any therapy on the physical side. So, for the most part we are very happy with how this year has gone. On the other hand, John did go seizure free for two months last year. We know it's possible to get there again, and it's been very frustrating not being able to achieve that again. It's also been a tough year trying to get him the help he needs with his delays.

We haven't kept a detailed seizure count for quite some time now, but Yoshie does record the general number of seizures every day. So, if I had to guess, I'd say John had about 5000-6000 seizures that we saw in the last year. That is obviously a huge improvement over the previous year.

After going through 6 drugs last year, this year he has remained only on Lamictal (and the VNS). This despite our doubts that the Lamictal is doing anything.

As far as tests, he only had 1 short EEG this entire year.

The next year will bring a new neurologist, almost certainly the whole gamut of tests again, and likely another drug trial or two. While this is hard on John, and hard on the family, we welcome the tests and trials in the hope that we can find something that will really work for him.

100mg Lamictal

We lowered John's Lamictal doseage again just over 2 weeks ago. He's now at 100mg/day. We never saw any increase in seizures from the decrease. If anything, he is again slightly better. He continues to do quite well, and I think his average daily seizure count is now down around 10, which is a significant improvement. He is still learning new things at his own sweet pace. And, he's taken a real interest in books lately.
Yoshie has gotten his therapy sessions up to 32 minutes. I never thought John would be able to sit still that long.
John's big issue now is his extreme hyperactivity. We're not too worried about it yet, as I believe it is a consequence of the drug wean and will probably diminish with time. Right now, it is truly unbelievable just how much energy he has. He is wearing his parents out!
We'll leave the drug level as is at least until his next appt. on June 15. He's been on this drug for a long time now, and we still have no idea if it's doing anything for him.

125mg

We lowered John's Lamictal to 125mg just over a week ago now. So, he's already gone from 175mg down to 125mg in less than a month. We really haven't seen any fallout at all yet. His seizure numbers are about the same as always. And, the intensity is about the same. If anything, he might be getting a little better.
He has good days and bad days in regards to his mental clarity, but overall I think he's doing a little better these days. He is learning some new words and just seems more with it. He's had a couple of days where he seemed really clear. I wish we could figure out what we did on those days to cause that.
Yoshie is continuing to do some pretty intensive therapy with him, and maybe that is the reason he is picking up more words. We are also attending the parent coaching classes every 2 weeks and trying to exercise what we learn in those classes. Plus, just being on less medicine probably helps.
So, really there isn't a lot of news to report, which is great news in itself. We'll continue to lower the Lamictal, probably in smaller increments now. It's so easy to get over confident about this stuff, but we've learned our lessons the hard way. It really pays to be patient.

more/less Lamictal?

We've been wrestling with whether to go up or down with John's Lamictal level. On the one hand, we want to make positively sure that we've given this drug a chance, especially since it took us over a year to get up to this level. On the other hand, it doesn't seem like John has gotten any better as we've gone up on this drug. What are the chances that one last increase would be the magic bullet? Every single time I give him a dose, we ask the question of whether I should give more or less. It seems crazy to just stay the same since he's still having seizures. We finally decided to go up one last time to 200mg/day, but we also decided to wait a few days, since Yoshie was first trying a soy and dairy free diet for awhile. Ironically, we forgot to give him his morning dose last Friday. That's the first time we missed a dose since this whole thing started. Wouldn't you know it, he seemed to get somewhat better. So, we took that as a sign that we should go down, and we took the plunge and took out 1 pill tonight. So, now he is on 150mg/day. We'll go down another pill in 2 weeks assuming things stay the same or get better.

We also had another meeting with the county to discuss John's therapy. John will start back at preschool once a week on Thursdays beginning this week. With that comes 15 minutes of speech therapy. Seems unbelievably insufficient to me, but I've given up trying to understand their reasoning. We'll continue on with his private therapist and take what we can get from the county. We have also gone to a couple of parent training nights, where they teach us how to teach John. Those have gone pretty well. Parent "coaching" is also included in that program, and we have had one of those sessions already. The therapists are good, and I think the classes are helpful.

The other big news around here is that John has started to use the toilet. Well, he won't tell us when he wants to go, but if you sit him on there, he will almost always go. I think that is a great first step and came rather unexpectedly. The little milestones are definately appreciated a lot more with the special needs kids. Last week, I would have easily believed that he could never be potty-trained. Now, I think he could figure it out at any time.

1 year VNS anniversary

As expected, the extreme hyperactivity that we saw after the last med increase subsided pretty quickly. And, right on schedule, the number of daily seizures climbed back to where it was before the Lamictal increase. So, now we are left to decide if the increased Lamictal is helping him at all. It is not clear cut by any means. We can't use the number or severity of the seizures as a gauge, as that hasn't changed in some time. So, we are left trying to determine if his behavior, understanding, or speech has improved at all. Since those changes happen so slow, and we are with him every day, it is very hard to tell.
On the one hand, it doesn't seem like the seizures have improved much since around August when he was on 100mg Lamictal. I often think we ought to start removing the Lamictal and see if things get any worse.
On the other hand, I think he has made some significant improvements in other areas over the last 5-6 months that might be related to the med increase. He can do some things now that would have been unthinkable last summer. We can now take him out to eat. He can play on a playground as we watch from the side. He's basically just a really happy guy these days. I hate to mess with that.
March 28 was the 1 year anniversary of his VNS surgery. It wasn't actually turned on until 2 weeks after that, though. They always say that the VNS can continue to improve things for up to 2 years, so its also quite possible that the improvements we have seen are a result of the VNS. He's definitely a strong responder to the VNS, so it would make sense that we would see added benefit with time.
Yoshie has been doing a lot of therapy with John. He actually sits down for a full 15 minutes during his sessions. Yoshie has developed a method where she basically holds him down, but he has learned to accept it and does pretty well. He IS learning some things, just painfully slow.

Increase in Lamictal

We finally got the results of John's blood test last week. His Lamictal level was 6.6. This is definately in the therapeutic range, but still well under the theoretical max level of 10 or 11. John was a little sick for a few days so we postponed doing anything. On Sunday night we increased his dose to 175mg daily. Hopefully, we'll see some improvement over the next week or two. Actually, we've already seen some changes. He has been incredibly hyper the last couple of days. He's totally happy, just absolutely full of energy. He runs around and jumps all day. It's wearing us out, but it's nice to see him so happy. I think this will calm down as his body adjusts. Also, he only had 3 seizures today! Could be coincidence, or a honeymoon. But, at least it is a step in the right direction.
His seizures now still last a few seconds and sometimes include some shaking. We can absolutely bring him out of a seizure by yelling at him or picking him up. If you ignore it, they sometimes continue on. What kind of a wierd seizure is that? He isn't falling or even losing consciousness. These are myoclonic seizures where his head gets forced down and his arms come out. It's sort of funny in that it puts him in to a stance where he looks like he is going to jump. So, often when he comes out of the seizure he immediately starts jumping.
Speech therapy is very tough, especially when he is so hyper. Yoshie is doing a good job of getting him to focus a little more. It's definately not easy for him, though. Yoshie attended another class where they taught her some new techniques for training him. She has been trying out some of those techniques this week. It's hard to say if anything is really working. Progress is definately slow, but he sometimes seems to be picking some things up so it is worthwhile to continue.
The other good news is that it looks like my insurance may have recently added OHSU to the "in-plan" hospital list, which means our new neurologist would require a lot less out of pocket expense for us. It's not a sure thing yet, but the lady I talked to at my insurance company made it sound like it was definately going to happen.

Last visit with neurologist

We had our last visit with the neurologist on Tuesday. All went well.

• John's lamictal level hasn't made it to their office yet, so we are leaving the dose as-is for the time being. He'd like to see the lamictal level in the 7-10 mcg/ml range, and possibly as high as 12 mcg/ml if he can tolerate it. The therapeutic range is 5-13 mcg/ml, but really it is just a matter of pushing it up until he can't tolerate it. We've never had his level checked, so we really have no idea what it is at. We'll re-evaluate as soon as we get the level.
  
• We didn't make any changes to the VNS settings either. He did get it interrogated (see the picture) to make sure the settings were what we wanted and to verify that it was still going strong. He estimated that the VNS still has 2 years of life left which would be amazing as we originally were expecting only about 12-18 months due to his settings. Even though there is no pain involved, John hates having to stay still that long and eventually we had to hold him down on the table (while he screamed) just to keep him still.

• We're holding off on the referral to go to UCLA. I told him that our fear is that our new neurologist will not be so willing to make a referral, and he said that our fears were unfounded and it shouldn't be a problem if we want to pursue this later.
• He gave us a referral to the OHSU ped neurology team, with strong wording so it wouldn't be a problem for us to actually get in. He recommended that John be evaluated by the OHSU Epilepsy Surgery Program.
• He admitted to us that he has suspected that John may indeed have a focal point to these seizures. This came as a big surprise to us, as we've been told all along (by 3 neurologists) that John did not have a focal point, except the one time when he was having those wierd "mouth-opening" seizures. Of course this is huge news, and keeps our hopes alive that we still may be able to beat this thing. He said that John's seizures appear to him to come from the left hemisphere, and his latest EEG in January confirmed this. I'm not sure why he decided not to mention this to us before. He said that OHSU will likely jump on John's case.
• I was able to call and get an appt. with OHSU for June. That wasn't nearly as bad as I had thought. I guess return appointments can take many months, but I suspect we'll get scheduled for another round of tests after our first visit. We'll welcome that, of course.

Jumpy

While John is at the level of an 18month old when it comes to speech and understanding, his motor skills are much further along. I found him stacking blocks at least 7 high today. And, he can run and jump with the best of them. I thought I'd post this picture of him jumping off of our dining room table.

When we let him, he does a little circuit where he climbs onto the table, jumps off, and climbs right back up again. Yoshie said he was trying to swing from the light fixture the other day.
He also likes to climb up on the island in our kitchen. We have been able to stop him so far, but he really wants to jump down to the tile floor.
Another favorite activity is climbing to the very top step of the ladder and just falling backwards trusting that I'll catch him.
It's kind of ironic that he doesn't like our big inflatable "jumper". I guess it's the risk he likes.

His seizures are about the same this week, but we think he is beginning to understand a little more. We make him do some command before we give him almost anything. These commands consist of things like "touch your nose" or "wave". He used to just go through everything he knew until he got to the right action. Within the last couple of days, he's actually been listening to what we were asking and can get it right if he's in the right mood.

Rash, oh no!

John has been sick off and on for a couple of weeks now. Recently he has started running a slight fever. Friday he developed a rash over his whole body. Since a deadly rash is one side effect of the Lamictal, I called the neurologist, who said I should make an appointment with his pediatrician ASAP just to make sure it isn't the dreaded Stevens-Johnson rash. Well, it wasn't. It turned out to just be a normal childhood rash. And, it cleared up by Saturday evening.
With the fever, etc. Johns seizures became worse. One day he had over 30 seizures. His seizures are different again. They last a few seconds now and sometimes include shaking. It feels like he is going in to a grand-mal every time, and we keep the VNS magnets close-by at all times now. However, these seizures are different in that he doesn't seem to lose consciousness. In fact, he has fallen a couple of times from the seizures, but he is able to break the fall with his arms. That is a huge improvement over the drop seizures that he endured for so long. So, maybe this seizure type, while appearing more frightening, is actually an improvement?
In any case, the number of daily seizures has returned to a more normal 10-15/day as his health has returned. He's had a few days where we didn't see any seizures after about 5pm.
We're getting more relaxed about what he eats, and it hasn't seemed to make any difference. We went to the zoo the other day and he actually got to eat an ice cream cone - maybe his first ever?

John's neurologist is retiring

We knew it could happen at any point, but it still was a bit of a shock. After 38 years as a pediatric neurologist, he's closing up the clinic next month. We owe him a lot, as I don't believe any other neurologist would have been so aggressive in getting John on the keto diet and ultimately getting the VNS for him, all within 9 months of seizure onset. That being said, I think he was running out of things to try, so we were already talking about trying to see another doctor just for another opinion. So, the timing isn't that bad for us.
We scheduled one more appointment to see him in the next couple of weeks. We need to discuss our plan of action before we can get an appointment with another neurologist. And, we have to talk about what will become of his referral for us to go to UCLA. I'm not sure if that is still an option or not.
So, we now need to find a new neurologist. I checked with my insurance and the only 2 that are "in-plan" are not good choices for us. There are 3 at OHSU which we're going to try to get in to see. We tried once before and they weren't taking new patients, but it sounds like we may be able to get in now due to the circumstances. OHSU is an "out of plan" hospital for my insurance, so we'll have to pay a lot more now, but we don't really have any other choice.
We finally took John to get his labs done again. It's been quite awhile since he's had to do that. We wanted to do it ASAP, in the hopes that the results will be back before we see his doctor for the last time. We're mostly interested in his Lamictal level, so we can determine if we have any more room to play with his doseage. Of course John doesn't particularly like people poking him so it always a bit nerve-wracking to have to do those labs. He screams like he's going to die, and gets really tense, which just makes it harder to get the blood.
As for John's seizures, they have gotten a bit worse again. He had well over 20 yesterday, some of them a couple seconds long with shaking. But, at the same time his spirits are great right now. It just seems like the days when he seems more clear are also the days when he has a lot of seizures. It's a trade-off, but as long as the seizures don't progress to anything more drastic (like drops or tonic-clonics) then I think it's better this way.

Tough couple of weeks but better again

After my last post, John went through a pretty tough couple of weeks. His seizures got strong enough that we came close to having him wear a helmet again. On a few occasions, he looked like he might be going in to a grand mal seizure again. Thankfully, that didn't happen. He also continued to have other strange behaviors like he would spit out almost anything he ate. He wanted to eat, but every time something went in his mouth he'd spit it out and cry. We took him to the doctor and the dentist to try to find a cause but they couldn't find anything. It was probably seizure related, but who knows. Thankfully, this behavior has also disappeared over the last couple of days. He did end up getting a pretty bad cold, so maybe all of this was related to an upcoming sickness.
Due to his cold, we haven't gotten his blood draw yet. We'll probably do that in the next week or two. I don't think there is any real hurry.
We had another meeting with the speech therapist, and we now have a plan to work on over the next month. Yoshie has been working pretty hard with this last week and I think it's paying off. He hasn't made any huge jumps, but he does appear to be learning a bit.
The last 2 days, John has really seemed to return to his normal self. He's had less than 10 seizures each of the last 2 days, and is happy most of the day. It really felt like things were going downhill quickly a couple of weeks ago so it's nice to be back to where things had stabilized.

EEG

John had his first EEG since Oct. '04 yesterday. It was just a short one done right in the neurologists office before our visit. Of course John hated having the leads put on his head so we had to hold him there for the 15-20 minutes while he was crying hysterically. He struggled with us the whole time. I wonder if that has any influence on the EEG readings? Anyway, his EEG was pretty bad, unfortunately. He had a number of seizures during the test that we didn't even outwardly see. So, I guess he's having a lot of seizures but just some of them are long enough that we can see them. Also, he continues to have significant background slowing. With all that is going on in his brain, it is sort of amazing that he continues to do quite well. Here is a 10 second snapshot of the EEG:















You can see one of the seizures occur here. Notice that it is only about 1 second long and affects the entire brain.
So, despite the fact that the VNS has really helped his outward seizures, it doesn't look like it has done much for his cognitive slowing. Our neurologist said that this was typical for the mycoclonic epilepsies, and that even if he were to go seizure-free, he likely wouldn't just start learning again. Since drugs, diet, and VNS have not helped his EEG, the only other possible alternative is brain surgery. Of course we've already gone through the 24hr EEG to determine if he was a surgical candidate and he isn't. However, there are some new tests that are being done at UCLA that can sometimes find a seizure focal point where traditional methods have failed. It's a long-shot, but I think it would be good to have the whole gamut of tests run again and reviewed by a different epilepsy team. So, we are going to pursue this later this year.
In the meantime, John had his VNS ampage increased again to 2.0mA, and we remained at a 54% duty cycle (on 54% of the time). The magnet is now set at 2.25mA. Even at these rather high parameters, the VNS doesn't appear to even be noticed by John. He had a lot of strong seizures yesterday after the increase, so it hasn't helped him yet. Hopefully we'll see a gradual improvement over the next couple of weeks.
We're getting another blood test in the next couple of days to determine the level of Lamictal in his system. Assuming it isn't already too high, we'll increase his Lamictal dose once again after giving the VNS a couple of weeks to do its magic. John has been on Lamictal for about a year now, and although we have no idea if it is doing anything at all, we want to make sure we've really given it a shot before we start the long process of getting rid of it. And, so far the side-effects of the Lamictal have been much more tolerable than the other drugs he's tried.
The doctor mentioned Vigabatrin and some benzo again, both of which we aren't interested in. He also mentioned trying to add Topamax back in to the mix. We told him we didn't want to do that either and he said he understood. He actually said, "Think of me as a hardware store. I can present all of the options for you, but you have to decide what you want.". It's all a big guessing game with ever increasing risks. My son's life is on the line, and we're left relying a great deal on on gut-feelings and parent intuition. And, it's not the doctors fault - it's just the way it is. I'm grateful that our doctor doesn't pretend to know everything and lets us make decisions.

More of the same

I haven't posted in awhile, mainly because nothing has really changed. John is still taking 150mg of Lamictal per day, and is continuing to have roughly 15 small seizures every day. He remains happy and is continuing to progress cognitively, still at a snails pace though.
We did have a meeting with his private speech therapist. She has a lot of confidence that John will progress well, so it gives us a lot of hope. We have some items to buy (ie special headphones, picture cards, blocks) and we have some stuff that we are supposed to study before we see her again.
Yoshie also talked to Maya's old preschool, and we are considering enrolling John in the 2's or 3's class starting in September. He'll be 4 at that time, so he'd be either 1 or 2 years behind. It sort of depends on how John does over the next few months. Right now, he does not have the understanding or patience to attend the 3's class, but I think he is improving in that regard. I think he'd enjoy being around the other kids.
John has his EEG next week. That will certainly be interesting. We might also ask for a referall to another epilepsy center, depending on what the EEG looks like.

neurologist visit

We saw the neurologist again on Friday. As is customary, he let us decide what to do and he just gave us his approval. Since his last VNS adjustment didn't seem to make any difference we decided to increase his Lamictal one more step (to 150mg/day) to see if that made any difference. We made that increase on Friday night. So far, it doesn't appear to be doing anything, as John is continuing to have the same number and type of seizures. Right now, I don't know what to think about Lamictal. It might be doing nothing, it might be helping, and it might be hurting. We aren't going to change anything else now until John has another EEG. That is scheduled for the 31st of this month, right in the doctors office. It will be a routine EEG, so it shouldn't take more than 30-40 minutes. He hasn't had an EEG since Oct, 2004, so it will be interesting to see what that shows.
We are very concerned with John's very slow development. We asked the doctor his opinion on what we could do about it. His response was that John is simply doing amazingly well, all things considered, and he hinted that we should probably just be happy with how far he has come. He was surprised that John didn't need a helmet anymore and made the comment, "Once kids have to wear a helmet, they very rarely are able to get rid of them". He said that 15 years ago, John's story would have been unheard of (failing so many drugs only to find something that worked). We asked about different drugs, and he reiterated that drugs don't appear to work for John and that is why we got the VNS in the first place. We should just be very thankful that it has worked so well. Yoshie and I have mixed feelings about his comments. Yes, we are very thankful for how well John has done over the last 6 months. But, we've read enough stories to believe that it can still get better. I suspect that we'll see a lot of continuous background activity on his EEG. And, I also suspect that if we can clear up this background activity that John can progress at a faster rate. The doctor said that John probably has some other unknown issue and that seizures are just a part of it. My gut feeling is that the seizures ARE the problem and there is some chance that he will grow out of them or we can find a treatment that can better control them. The brain is growing and changing, so drugs that failed in the past may work now. And, there is an endless number of drugs and combinations of drugs to try. And, the VNS could well work even better given more time. So, we still have a lot of hope, and I believe our hope is justified.
Nothing to report on his therapy, because he hasn't had any. What a complete disappointment our county special needs program has proven to be. We do have a meeting set up with the private speech therapist again for later this month. We know she is good, but she already has such a full schedule that it's hard to get to see her. It appears to me that there is a huge opportunity for good speech therapists. There just aren't many of them, and parents are willing to pay top dollar for good ones. With so many autistic kids these days, it just seems like the opportunity is endless.
Yoshie's mom is staying with us this week. At first, John was really scared of her. But, each day gets a little better and I think he is finally pretty comfortable.