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.

December 2004

We continued to wean the tranxene in December. We saw a slight increase in seizures with each step, but nothing dramatic. And, after a few days, he would stabilize. We were able to completely get rid of the Tranxene by Dec. 17. I swear we will never, ever, put John on a benzodiazapene again for more than a couple of weeks. That is a terrible drug that didn't help the seizures at all, caused him to become dull and slow, and caused more seizures when weaning. We were very, very happy to have that behind us.
We also continued our ridiculously slow wean of the Topamax throughout December. By the end of the month, he was on just over 30mg day, which is far below any therapeutic dose.

The big story of December was John's ongoing serious constipation issues. We didn't know it was serious, of course, until John had his barium enema on Dec. 9. The technician looked at John before we even started the test and said "he is very, very constipated". I told her that the x-rays and the GI specialist didn't think he was. She reiterated that there was no question in her mind that John was severely constipated. John did very good during the barium enema. It took probably half an hour. Yoshie and I were able to watch the screen the entire time. It was shocking to see just how backed up John's intestines were. She traced around his intestines showing how far back the blockage went and it seemed to never end. There were many "stones" in there as well. And, the intestine was completely stretched out. She said she had seen worse, but not too much worse. It's unbelievable to me that the GI specialist (and x-ray tech) could have completely misdiagnosed this. Arrgh.
The barium enema was on a Thursday morning, and the results were to be sent to our GI doctor immediately. So, I called the GI doctor on Thursday evening to see what the treatment would be. She said that she hadn't received the results yet, so she couldn't comment on it. I explained to her that I was in the room and could say unequivocally that John was very constipated, but she wouldn't take my word for it. I called many times on Friday, to the point I irritated the receptionist. Finally, at about 4pm Friday afternoon, I got a call back from the receptionist. She said that the doctor had looked at it and that the barium enema showed that everything was NORMAL!!! It was a pure lie, and I let them know it. Ten minutes later, the GI doctor called me back and apologized for the "mix-up". Sure enough, John was constipated. We were to give him enemas twice a day for a few days. She thought this would be enough to clear him up.
9 days later, we were still giving him these enemas, and he was still really constipated. She advised us to quit giving enemas and to start giving twice the adult dose of Miralax. We did this throughout the month. By the end of December, it seemed things were finally getting better. Far from normal, but at least he was going on his own at this point.

John stayed on a (dairy & gluten free) 3.5:1 ratio on the diet until Dec. 28. At that point we went down to a 3:1 ratio to try to help with all of his stomach issues. I also picked up a 1/10 gram scale on eBay so we could weigh his food even more precisely. We finally gave up on the dairy-free part on Dec. 31. No reason to keep doing that, as it wasn't helping.

Of course Christmas is also in December. Santa brought the kids an inflatable bouncer. He must have thought John could play in there while his parents watched from the outside, thereby giving John some freedom and his parents a break. It was a great idea, but John just wasn't very interested in the bouncer. At least his sister liked it.

November 2004

The main theme of November was John's ongoing constipation issues, and very huge number of daily seizures. We also spent the entire month weaning the Tranxene, and ended the month on a pretty low dose.

Ever since John's hospital stay in October, John has been severely constipated. He had a couple of x-rays that didn't show us much. He was on a high dose of Miralax, and we were giving him suppositories and enemas as needed. We finally got an appointment with a pediatric GI specialist in early November. During this visit, she did a rectal exam and said that she didn't think John was constipated at all. We started to really get worried about this. Her exam, and the last x-ray both showed that John likely wasn't constipated. Then, what do you call this? She didn't have a good explanation, so she ordered some lab tests. John had to provide a stool sample, as well as some more blood and urine.
We got the results of these tests in late November. The notes from the lab said that one of the tests could not be carried out since the stool sample was too hard. Interesting, since the stool sample we provided was the consistency of water. I began to wonder if they tested the wrong sample. Anyway, the urine test proved to be worthless, as the keto diet screwed with all of the results. The blood test showed one interesting piece of information - his IgA level was very, very low. This can be a sign of celiac disease, which is something we've been thinking about for awhile. For a good 10 minutes, I really thought we had the answer to this whole thing. After discussing this with her colleagues, she told us that John doesn't show any of the normal signs of celiac disease. She went on to say that 1 out of every 600 kids just has a low IgA. It seemed to me that there had to be more to this than just coincidence. I later did some research and came to the conclusion that the test is just majorly flawed if you don't take in a decent amount of gluten in the weeks prior to the test. Of course John gets almost no gluten on this diet. I sure wish the specialist would have known this, so we could have spared John the unnecessary blood test.
Anyway, she was completely stumped as to why John was still having all of these problems. She ordered a Barium enema to be performed in December. This is where they coat the intestines with Barium, then do an x-ray so they can get a very good picture of what is going on. She wanted to test for a condition called Hirshprungs disease, which is physical deformity of the lower intestine. This didn't seem reasonable to us - surely the problems were directly related to his high fat diet. Oh well, we agreed to the test anyway, just to rule this out.

Also, in November, we started doing the diet Gluten free (Nov. 5) and dairy-free (Nov. 24). John was then probably on one of the most restricted diets of any human on the earth. None of this seemed to have any effect on his constipation (or whatever it was) or his seizures. In fact, John was averaging over 70 seizures a day for the first 2 weeks in November. He did go down pretty abruptly to about 50 seizures/day for the last 2 weeks in November. This sudden change in seizure frequency didn't directly correlate to anything. It could have been due to less meds, or the gluten free, or just chance. We just have no way to know.

The one really great thing that happened in November is that we greatly reduced his Tranxene dose. We went down by just a quarter pill every 2 weeks. This may seem really slow, but in the whole scheme of things, that was quite quick. Tranxene is a benzodiazepine, and is considered more addictive than heroin. Kids that are on it longer than a few months can sometimes have a huge increase in seizures when trying to come off of it. In fact, there are a few parents that we were in contact with that had their kids go into status when coming off a benzodiazepine. This means that the kid was having non-stop seizures, sometimes for days or weeks at a time. They often have to put the kids in a coma to get them out of the status. We wanted to avoid that at all costs. No doctors should be prescribing this drug for anything longer than a couple of weeks. There are countless studies that show this. I just don't think all of the doctors keep up on the research.

John's routine blood work showed that his CO2 level was way too low. The diet can cause a lowering of CO2, and the Topamax can also do this. The two treatments combined really put John at a level that nobody was comfortable with. Even though you should never adjust 2 meds at the same time, we started getting rid of the Topamax at the same time, albeit very slowly. Topamax comes in a capsule, and consists of about 120 small white balls. We would take apart the capsules, and remove 1 more ball each day. At this rate it would take us 4 months to wean just one capsule, but it just felt good to be doing "something" about it.

As for the diet, we stayed at a 3.5:1 ratio the entire month. We did increase calories from 915 to 950 in the middle of November, as John didn't seem to be gaining any weight at all. At this point, he was eating everything we gave him, so he had precisely the calculated number of calories every single day.

Oct 2004

October started rather poorly, with John losing the good days of 20ish seizures. We held off making any changes to see if he would get back down to those good days, but it didn't happen. He was scheduled to go get the video EEG and spinal tap on Mon, Oct. 18. However, I got a call at work on Wed., Oct 13 saying that there had been a mix-up with the scheduling. When I was finally able to talk to the scheduling neurologist, she practically begged us to come in on Thursday, Oct 14. If we couldn't make that date, it might be a few weeks before we could get in again. So, I got the OK from my work to suddenly take the next 2 days off, and we agreed to come in on the 14th.

I was hoping OHSU had a little better set up for the 24hr EEG than the last hospital. Unfortunately, this wasn't the case. At least we could actually watch the EEG here. At Emanuel, they don't let the patients see it. After going through the long process of getting the leads attached to his head again, we settled in to the process of trying to keep him in one spot so the camera could catch his seizures. He had a lot of seizures. In fact, he was having clusters of 10+ seizures again, which we hadn't seen for awhile. We figured it must be due to the stress of the hospital. We could see the EEG, and it was obvious that it was really messed up. And, it also didn't look to me like there was a focal point. The sole purpose of going through this was to hopefully find a focal point, which would mean surgery was an option. Of course, we also hoped that we would see an improved EEG, though we had no reason to believe that was the case.


The neurologist came in at some point and said her first impressions were that there was not a focal point. That was rather sad news for us, but not unexpected.
During this first day, we also met with the metabolic specialist. He asked us a million questions, and examined John pretty thoroughly. OHSU is a teaching hospital, so he had 4 or 5 students also in the room. After examining him, he told us that he didn't think John had a metabolic issue, as he was too healthy for that. However, we wouldn't know for sure until all the blood tests had been run, as well as the spinal tap.
They also put a high dose of B6 into the IV, just to positively rule out a B6 dependency issue. Unfortunately, this didn't seem to have any effect on John's seizures.
I went home at night, and Yoshie stayed with John. She said that John's EEG really stabilized when he was asleep. That is good news. At least his brain is getting some rest.
The next day, John had to go through the rather miserable process of removing the leads again. He was still having an awful lot of seizures.
Later in the day, he had his spinal tap. We had read up on this procedure, and everything I read said it was common practice to have the patient lay down for a few hours after the procedure in order to let the puncture sight heal. If you didn't do this, you could risk a "spinal tap headache", which is supposedly very brutal. I asked about this, and they said it simply wasn't necessary.
Yoshie and I were in the room when they gave him the anesthesia. We knew what to expect, but it hit us a little harder than we expected when John suddenly went lifeless right in front of us. The whole thing went quickly and he was brought back to the room to wake up. Soon after he woke up, he was full of energy. The nurse said it was OK for him to run around, so he did. Later we would learn what a big mistake that was.
He also had to give a bunch of blood for the metabolic testing. He's gotten used to this, so it isn't a big deal for him anymore. Yoshie tells the nurse exactly where to poke him, and all usually goes well.

After we got home, John seemed to have more and more seizures, and then he began to lose his strength. Turns out that he got the dreaded spinal-tap headache. At one point, he couldn't even sit up in the bed. And, it took a week before he could walk without losing his balance. In hindsight, I guess it was no big deal. At the time, I was angry at the docs for giving John the green light to run around after the tap. And, we were sort of worried that permanent damage had been done. Of course, that wasn't the case. But, when it's happening you aren't so sure.

He had so many seizures in the hospital that we decided we needed to give him back some of the Topamax that we had taken away. We increased his dose from 30mg/day to 37.5mg/day. He had one good day of 30 seizures, then he just got worse and worse.

We had an appointment with Dr. S and our nutritionist on the 21st. Dr. S had gotten the EEG results back from the hospital, and it was bad. There was definately no focal point, and his seizure activity was basically present all the time. We all still wanted to give the keto diet a fair chance, so he agreed that we should keep going with that, and leave the drugs right where they were. He gave us a video explaining the VNS, but we had already extensively studied this so there was no new information.
After talking with the dietician, we decided to go up on his ratio to 3.5:1, and we decreased his calories to 920.

John ended up having 100 seizures on Oct. 21. That was a milestone we hadn't imagined in our worst nightmares. He would out-do this on Oct. 23, with 108 seizures.
We became concerned at this point that he might be really constipated. He would only have a BM every few days, but when he did it was very watery. After talking to the nurse, we gave him a suppository if he went 3 days without a BM. On Oct. 25th, Yoshie took John to the pediatrician and she ordered an x-ray to see if he was constipated. He was. He got his first enema, and another suppository, but we still couldn't get him to have a BM. He started on an adult dose of Miralax. On the 29th, we got a 2nd x-ray, and they thought he was cleared out.
He continued to have 60+ seizures/day, but thankfully didn't have anymore days of 100+ seizures. Still, he was doing worse than ever. We were blaming the constipation, but now that didn't seem like an issue.

John got out to just a few houses for Halloween. He couldn't eat any candy, and he just wasn't doing very good anyway, so we didn't push it. I was able to take Maya over to Eric & Amy's neighborhood and she was able go to a lot of houses with Sam, so she was happy.

Sept 2004

John started September having 35-45 seizures per day. He was on 60mg of Topamax, 7.5mg Tranxene, 200mg B6, 175mg depakote, and a 2:7 ratio on the diet. By the end of Sept, the depakote and B6 were gone, Tranxene was down to 5.63mg, Topamax was down to 30mg, and we were on a 3:1 ratio. In hindsight, that was way too much to be changing in that short of time.
We started the 3:1 ratio on Sept. 2, and we also started aggressively getting rid of the depakote at the same time. John continued to get better for about 2 weeks. Again, it felt like we were on the right track to beat this thing. On Sept. 15, he only had 14 total seizures (7 clusters) in the entire day. That was 2 days after the depakote was completely gone, and about 2 weeks in to the 3:1 diet ratio. I wish we would have stopped right there to see if John could maintain this level. Of course, at the time, we still thought we could do better. Once the Depakote was gone, we started working on the Topamax. We really hated all these drugs, and had a hard time deciding which to get rid of first. The Tranxene is the most addictive, so sometimes we thought that should be first to go. But, the Topamax was causing extremely low blood CO2 levels, which was hampering what we could do with the diet, so we ultimately decided that was more important. The B6 didn't seem to help at all, so we discontinued it after about 10 days.
Once we got the Topamax down to 30mg/day, John's seizures started to creep back up in number. By the end of Sept, he was back to having 30+/day.
Also, in early Sept. I took a day off work and we went to see the homeopath to talk about the hair sample we had tested. This was actually the first time I had met her. She was very nice, but it became apparent to me immediately that this was completely outside of her expertise. She was really against the ketogenic diet, which I found extremely strange. I mean, we're talking about a DIET that can CURE epilepsy in 2 years. She thought we should go off all medicine and the diet, and follow her lead. She gave me some articles from 100 years ago that told of homeopathy curing seizures. I asked why there weren't any more recent stories, and she didn't have a good answer. I know she meant well, but I truly believe that if this were her kid, she wouldn't be relying on herself to cure this.
The hair sample showed that John had a very high level of aluminum. Now, I searched high and low and could not find any relationship between elevated aluminum levels and seizures. I'm still not sure what to make of that. Western doctors won't even discuss hair samples, and after doing a little research, I understand why. Still, we're keeping that in the back of our minds as something to follow up on. I'd like another hair sample test at some point to see if it still shows this elevated aluminum.
I left her office pretty upset. I tried my hardest to avoid a confrontation, and I think I was mostly nice, but I think she knew that we would not be coming back to see her. Still, we got rid of all aluminum cookware, and John hasn't had a drink from an aluminum can since. And, since flouride can make aluminum worse, John has been drinking bottled water since that day.
We got the appt. for John to get the spinal tap, video EEG, and metabolic workup. That was set for Monday, Oct. 18.

August 2004

We really believed that John was a perfect fit for the ketogenic diet. I think we both thought he would go seizure free in the first couple of weeks on the diet. Unfortunately, we didn't really see any change at all. However, we were still at a 2:1 ratio. Most kids start at a 4:1 ratio (and a 5 day hospital stay). We had lot's of "fine-tuning" to do, so we remained optimistic.
At first, it was pretty hard to get John to eat everything. Because of this, his actual daily calories were all over the place (though never more than 1100). We experimented with menu's. We were able to make a chocolate that was a perfect 2:1 ratio. And, Yoshie even figured out how to make this miniscule sushi that he could have a couple of. His staple food was heavy whipping cream, flavored with Stevia, as is standard on this diet. Yoshie spent many hours every day preparing his food, which had to be carefully weighed to the gram.
On Aug. 4th, the side effects of the Topamax became too much and we lowered his dose from 75mg to 60mg. Within a couple of days, he was sleeping better. His seizures may have gotten slightly worse after this, though. At this point, he had officially failed 3 drugs (though he was still on all of them). It's well known that if a person fails 2 anti-seizure drugs, the chance of ANY drug working is less than 5%. Our real hope was now the diet. And, we began to think about brain surgery. Nobody likes to think about subjecting their 2 year old to brain surgery. But, in fact, this type of surgery is very successful and can actually be a cure. If the seizures start from a single focal point in the brain, that part of the brain can be removed. In most cases, that part of the brain isn't being used anyway, so there aren't any adverse effects. The key is that there MUST be a focal point. We didn't think John had a focal point, based on his first EEG, but we weren't sure yet.
On August 11, we increased his ratio to 2.5:1. It's hard to tell if this did anything or not. It seemed that he had good days and bad days, but overall I think he was averaging slightly more seizures on this higher ratio. That is not what we were hoping for.
One day I got a frantic phone call at work. All I could hear was screaming in the background. My heart sunk. I was sure John was having a severe grand-mal seizure. Yoshie finally got to the phone and told me that John had taken a bad fall and I needed to come home. I raced home to find John with a huge lump on his head. It was bleeding, and obviously was painful. We rushed to the urgent care clinic and they let us in pretty quickly. They said it was a run of the mill bump on the head that they see all the time. But since John was having seizures they thought we should go to the ER. Finally, after a consult with our neurologist, they decided that it was unlikely that this would aggravate his seizures. So we went home with instructions to wake him up every 2 hours at night and to go to the ER if we saw any change. Thankfully things got better quickly and he was almost back to himself by the next day.
Just a few days later, John happened to find some silica gel under our washing machine. Of course he decide to eat it. We tried to wash as much of it out of his mouth as possible, but it was clear that he had swallowed some. For some reason I had thought that silica gel was terrible poison. Maybe it's the big "DO NOT EAT" warning on the side. In any case, it was a huge relief to find out that it's really not a big deal. For a few minutes there, it felt like the world was ending. We were so worn out from everything, and it just seemed like there was no end to the madness.
We met with the nutritionist and the neurologist on the 23rd. Things were going pretty well with the diet, so we decided to go up to a 2.7:1 ratio. We wanted to go to a 3:1 ratio, but decided it was best to take baby steps. Surprisingly, John's seizures began to go down each day after going to that ratio. On Aug 26 and 27, he only had 19 seizures. That was the best we had seen in a long time. It just felt like they were going to keep going down, all the way to zero. Unfortunately, they started climbing again on the 28th, and on the 30th he was back to 48 seizures. In our visit with the neurologist, we decided to try to start weaning the Depakene, then Tranxene. We switched the Depakene (sugary and full of carbs) to Depakote (capsule), and he gave us a weaning schedule. The truth is that we had been reading up on the problems with the depakote/keto diet combo and we had already begun to decrease the depakote. This is the point where we really realized that the doctors have no idea what to do when it comes to epilepsy. It's entirely up to the parents to make the decisions. Since that day, we've made all of the decisions regarding John. We always check with Dr. S, of course. And, so far he has always agreed with what we have suggested. I think he knows that I can study Johns individual situation more than he ever could.
We got the ball rolling on a spinal tap to check for neurotranmitter problems, as well as a full metabolic workup and another 24 hour EEG to check for a focal point to his seizures. No date was set yet, but they started with the paperwork to get insurance approval, etc.
We also decided to try the B6 again, thinking that maybe we just didn't give enough before. We gave John 100mg/day for a week, then upped it to 200mg on Aug 31. This is about 100 times the recommended daily allowance for a 2 yr old. We didn't see any dramatic change, but decided to keep with it for a bit longer.
Yoshie continued to take John to see the homeopath during August. She wanted to check for heavy metal toxicity so a hair sample was ordered. Hair samples are laughed at in western medicine, but we don't care. We'll try anything.
On a personal note, Ironman Canada was the last weekend in August. This was very hard for me to miss. I had signed up a year earlier, and had trained up through June 6. My last Ironman (Couer d'Alene 2003) was a disappointment, so I was so motivated for this one. I at least wanted to go up and cheer on my brother and friends, but there is simply no way that I could leave Yoshie under these circumstances. I know it's a huge longshot, but I signed up for IM Canada again for 2005. Ironman training takes a huge time commitment, so I really wont be able to go unless we can get John seizure free and learning again by March or April.

July 2004

July started very terribly. He had 77 seizures on July 1, which was his worst ever by far.
Then, he had a fever of 102 on the 2nd. I didn't really know what to do at this point, so I called the on-call neurologist who told us to go to the ER. This time, we went to the ER at OHSU. We were there for hours. They didn't really know what to do with us. They didn't want to send us home without helping, but there really wasn't anything they could do. They took his blood to get his drug levels, which were normal. The doctor got to see some of John's seizures and ordered Ativan to stop them. I explained that this happens all day, every day, but he didn't seem to accept that. Also, I had put on the admission form that John was NOT to be given Ativan, but I guess they didn't read that form. The guys came in to give him general anesthesia, but Yoshie and I stopped them. They felt really bad for poor John. They finally just gave us some ibuprofen and wrote us a prescription for Diastat, which can be given if a seizure lasts more than 5 minutes.
We really felt like we were in limbo between two doctors. It was frustrating, as it seemed like something that needed to be addressed ASAP. Everything I read made it sound like the brain "learns" to have seizures, so you have to stop them as soon as you can. I called Dr. S's office a couple of times to see if someone had cancelled, but could never get in. So, we just sat tight the first week of July. John seemed more and more like a drugged up kid at this point. In fact, he was a very drugged up kid, so I guess that was true.
We had our appointment with Dr. S. on the 7th. I was trying to build up the courage to demand letting us try the keto diet. Turns out that I didn't need to.
Dr. S. is a very straight talker. In the first 5 minutes that we saw him, he had laid out what he thought we should be doing. The keto diet was number 1 on his list. Woohoo! Then, some other drugs, a VNS, or surgery. He would never put down another doctor, but I got the impression that he didn't approve of the drug cocktail that John was on. He went back to his office at one point and we could hear him dictating the office visit. We knew things were bad, but when we heard him say that John seemed to have Lennox-Gastaut Syndrome, I think the reality set in. LGS is one of the worst epilepsy syndromes, that is characterized by multiple seizure types and mental retardation. Kids with LGS usually digress physically and mentally, and rarely have any success with medication.
He wanted us to start on the keto diet ASAP, and of course we agreed. Unfortunately, the dietician was out on vacation the following week, so we would have to wait 2 weeks to have our initial consultation. In the meantime, they would take care of getting insurance approval, etc.
Dr. S. likes Topamax, and he wanted us to give that a fair trial in the couple of weeks that we had before we could start the diet. So, we upped his dosage to 45mg that day, and increased by another 15mg every 5 days until we got to 75mg.
John's seizures actually went down in number on the higher levels of Topamax, but he was still having a lot of them, and we started to see some side effects from the Topamax. First, he started having a very hard time falling asleep. He would be up until 11pm, and still wake up with us in the morning. It made us all sleep deprived and miserable. And, he wouldn't sweat at all. We weren't warned of this side effect, and learned of it only after we became very scared and did some research. It was very hot, and we don't have an air conditioner in our house. In hindsight, I think we were lucky that he didn't get heat stroke or something. Yoshie always kept cool towels on him,etc.. That may have saved him.
We were getting desperate, of course. Yoshie started taking John to see a homeopath that had been recommended by her friend. We figured it couldn't hurt, and maybe she could at least help with the side effects of the drugs.
While waiting for our first appt with the dietician, we bought the "bible" of the ketogenic diet and read it a couple of times. We also signed up for a e-mail group that proved to be very valuable. We also got the software to create our own meals and we even created a couple to test out.
When we finally had the consult with the dietician, I think she was shocked at how much we already knew about the diet. Our 2 hour initiation lasted only 20-30 minutes, and we were able to spend the rest of the time talking about menu's etc.
Since we still weren't sure if John had some metabolic problem (that could potentially be made worse by the diet), we were to start at a very low ratio - 2 parts fat to 1 part protein+carb. But, for the first 2 weeks, she wanted us to just get John used to the foods. So, we gave him a lot of cream and butter, etc. He seemed to take it OK. We got our glucose monitor and ketone sticks (to measure ketones in the urine).
I think we got overly anxious to actually get started, because we took a ketone reading (just for practice) on July 21, and he already was in ketosis!! We got a little scared a that point that we weren't monitoring anything and being in ketosis could be dangerous, so we gave him a bunch of carbs to bring him out of ketosis. It was sort of ironic that the next couple of days would be some of our best, seizure-wise. We were very optimistic that maybe the ketosis is what caused the decrease in seizures.
So, we officially started the diet at a 2:1 ratio on July 28th, after seeing the dietitian that day. He was allowed 1100 calories, with exactly 15.5 g of protein a day. John was still on a brutal drug cocktail of Depakote, Topamax, and Tranxene. Every now and then a kid will go seizure free almost immediately on the diet, and that was certainly our hope. Unfortunately he seemed to stay about the same those first few days.
There is this rare problem with kids called pyrodoxine dependency. It's a metabolic problem where kids need to take a huge amount of vit. B6. We were hoping this was John's problem, as the fix is relatively easy - huge doses of B6 for the rest of your life. So, we tried giving him 50mg/day for about 5 days. We didn't see any improvement so we stopped.

June 2004

We started keeping very accurate records of every seizure that we saw. This required us to watch John all of his waking hours. Things varied widely from day to day, but it looked like there was a definate trend of more seizures as the weeks went by. On Sunday, June 20, he had 36 seizures (9 clusters) that we saw. This was really scary. I called the neurologist on Monday for some advice. She wanted us to go back to 7.5mg of Tranxene and start a 3rd drug (Topamax).
It was incredibly hard for Yoshie and I to do this, but we followed through, thinking that the neurologist certainly must know what they're doing.
We also attempted to get a new neurologist during this time. The recommended neurologist had a waiting list, and at least a 3 month wait to get in. 3 months!!!??? That's not going to work. The very best we could find was a Dr. S that could get us in July 8th. Even that seemed way too far off, but we took it anyway.
Through the rest of June, we slowly titrated the Topamax up to 30mg/day. Unfortunately, John did not get any better. In fact, he seemed to get worse. He had 3 days in June with 60+ seizures. Yoshie and I had spent a lot of time studying during this time, so we knew that some drugs could make things worse. We also knew that his disease might just be progressing. We also had done some research on the ketogenic diet and we were convinced that we wanted to try it. The problem is that most neurologists won't let you even talk about it until many, many drugs have failed. By pure coincidence, it turned out that Dr. S was the only neurologist in town that supports the ketogenic diet. It seemed like it was "meant to be". The more we read, the more we thought that we wanted to do it. We were definately going to ask Dr. S when we saw him, knowing full well that he'd make us wait awhile.
I also entered the PacCrest half-ironman triathlon the last week of June. I had signed up before all of this had started, and had really been looking forward to it. I hadn't trained since June 6, so it was really foolish to even try this race, but I think I knew it was likely my last chance to do a race before I became hopelessly out of shape. I drove to Bend the day before the race. I felt terrible the entire race, and really wanted to quit. I managed to get to the finish line in a very poor time, and drove home immediately afterwards.
Yoshie had also planned to take the kids to Tokyo in late June and stay through most of July. Those plans had to be canceled. Luckily, we were able to get most of the ticket price refunded.

Back home

We came back home on Wed., Jun 9. We were giving him 300mg of Valproic Acid/day, as instructed. John was pretty unstable on his feet, and quite irritable. It seems like his seizures are getting worse, if anything. I tried to go to work Friday morning, but I was a complete wreck and broke down trying to explain the situation to my bosses. Work has been completely accomodating, to which I am very grateful. I only lasted a couple of hours before I came home.
I expected the medicine to help him, but it didn't seem like it was working. So, I called the neurologist Friday afternoon for some advice. She was shocked to learn that we were only giving him Valproic Acid, and not another medicine (Tranxene). I guess he was on Tranxene and Valproic Acid in the hospital, but there was some miscommunication and they forgot to get us a prescription for the Tranxene. She said that abrubtly stopping that med WILL cause seizures, and he will probably get better once he's on it again. She was going to call in the prescription. When I went to pick it up, it wasn't there. It was frustrating, as John was having to endure all of these seizures because of someones mistake. I made some more phone calls and I was finally able to get the medicine the next day.
So, John was then on 300mg Depakene (Valproic Acid) and 11.25mg Tranxene.
John's 2nd birthday was on Saturday. We had a family party at my parents house. He was showing signs of his old self, but was still really out of it. We didn't even buy him any real presents, as we decided we would celebrate his b-day when we got this all straightened out.
The Tranxene didn't seem to help at all. He stayed about the same, seizure-wise.
We went for our appt. with the neurologist on Monday. She had looked at his 24-hour EEG and she told us it was bad. She said she had only seen 1 other case in her 20 year career that was similar to this. She also said that it did not fit into any of the known epilepsy syndromes. This came as some relief, as we thought maybe John had the dreaded West Syndrome.
I asked if John might grow out of the epilepsy some day, and while she said "Anything is possible", she told us not to get our hopes up - that the kids that grow out of epilepsy usually are controlled completely by the first drug they tried. Since John had essentially seen no improvement with 2 drugs, his outlook wasn't so good.
She explained to us that the Tranxene is highly addictive and usually only works for a few months, so her plan was to take him off of that after a few months and start another medicine. She was uncomfortable with him still having so many seizures, but she didn't want to put such a young kid on 3 medicines at once.
We also asked her about surgery options, and the ketogenic diet. Her answer was that we were "years" away from those drastic measures. That made Yoshie and I a little uncomfortable, as those were the only 2 "cures" that I had heard of. Why would you have to endure years of seizures before looking for a cure?
I told her (again) about our insurance situation, how we had to switch neurologists, and how we had to pay for this visit out-of-pocket. She felt sorry for us, and didn't even charge us!

Hospital day #4

I turns out that a "24 hour" EEG is not necessarily 24 hours at all. They just want to make sure that they get a good sampling of his seizures. Since John only had 1 seizure type, and had a series of them hourly, they had more than enough data by morning. We were told we would be able to stop the EEG as soon as they could get someone in to remove the leads. Then, we'd probably be able to go home. We were happy to hear that we could go home, but it was a little unsettling that we were going to leave the hospital while John was actually in a worse state than when we came in.
There was some mix-up in scheduling, and we had to wait a few long hours to get the leads removed. We were able to unplug the device mid-morning, so he could at least leave the room (with a bunch of wires sticking out of his head).
When the guy finally arrived to remove the leads, it was obvious he didn't want to be there. He was so rough with John, and completely ignored John's crying, etc. It was probably the most traumatic thing all week, from John's viewpoint.
We got the MRI results in the morning as well. No problems. Again, this was a big relief. It began to look like John was one of these cases where the reason behind the seizures cannot be determined.
I was able to ask some more intelligent questions by this point, but the resident doctor couldn't really answer them. We still didn't know how to classify John's epilepsy. She said he was having atonic drops, which is when the muscles completely lose their function and you fall to the floor. To us, it seemed like his head was being forced down, and he never actually fell.
We left the hospital with a prescription for Valproic Acid, even though we thought he was on more than that. They gave us instructions to go to the ER if things got worse, but that we didn't need to call an ambulance unless the seizure lasted more than 5 minutes. John's seizures usually lasted less than 1 second. 5 minutes would seem like an eternity.
We also made an appt. to see the neurologist 5 days later, even though she was "out of plan" with my insurance.

Hospital day #3

John had his MRI in the morning. This wasn't one of those "open" MRI's. It was just a tube that his head would slide in to. Since this required him to be perfectly still, he had to get general anesthesia this time. The MRI took probably 30 minutes, and then they let us in to the little room to stay with him until he woke up. It took FOREVER for him to wake up. I began to really wonder if he was ever going to wake up. The nurse kept saying, "this is normal, he'll wake up any minute". When he was still out 20 minutes later, I think even she was beginning to get worried. Finally he opened his eyes, and within minutes seemed to be totally fine again.
The 24-hour video EEG was to start in the afternoon, so we had to switch rooms. After getting settled in the new smaller room, the nurse came in and glued the leads to his head. Since the leads need to stay on there for a day, they had to use strong glue and actually suction them on there. It took 30-40 minutes, which is a long time for a 1yr old to try to stay still. I'm still amazed at just how low-tech these EEG's are. The wires come from the head, down the back, and then over to a box, which is plugged in to the wall. So, John was basically plugged in to the wall with a relatively short cord. And, the video camera is only pointed at one spot. Any time John moved, (which was every couple of minutes), we had to go out to the main desk and tell them to reposition the camera. This is the 21st century! Why can't they have a wireless system, and a video camera that can follow the subject?
Every time we thought John had a seizure, we had to press a button. We weren't pros at reading his seizures yet, so we weren't always sure. Still, we were pressing the button an awful lot.
During the down time these first days, I contacted insurance and realized that this hospital was basically the only hospital in town that wasn't covered by my insurance, though they would still cover 70% after the first $2000. I called the hospital billing department, and they were very accomodating. They helped as much as they could, and assured me in the end that it would probably only cost my $1500- $2000 out of pocket. Money obviously wasn't important at that time, but it was still nice to know that I wouldn't be getting a $10000+ bill after all this. I also spent this time trying to research as much as I could about epilepsy. I learned that 80% of kids can get full control with meds and lead a normal life. Since I didn't know any better at the time, I assumed John would fall in to this 80%.
The rest of the day was spent trying to keep John occupied in this little room. Despite all his troubles, and the meds making him lethargic, he was still a 23 month old kid that wouldn't sit still for any time at all.

Hospital day #2

Of course everything still seemed like a bad dream at this point. And, since they wake you up every couple of hours in the hospital, Yoshie and I became increasingly sleep deprived. So, that whole first week just seems like a blur.
John had a 30 minute EEG during our 2nd day at the hospital. For those that don't know, this is where they stick a bunch of wires on your head and monitor the brain activity. John was a zombie from the meds still, so he slept through this. Yoshie was actually holding him, and they wanted us to wake him for part of it, but he was just too tired. As the technician started watching the lines jumping across the screen, you could tell something was wrong. I was watching it as well, and it looked wildly erratic, but I didn't know what an EEG should look like so it didn't really alarm me. I asked the technician how it looked and she said she couldn't comment on it, and that the neurologist would be in to talk about it. It's one of those cases where she probably would have told us, had it looked normal.
The neurologist came to talk to Yoshie and I later in the day. The first thing she said, after introducing herself, was "I'm very worried about your son." She only talked to us for a few minutes, but explained how John had constant, significant abnormalities in his EEG. She made it clear that this was a serious issue, and she looked genuinely saddened to have to report this to us. She said she was determined to find out what the cause was. She ordered a CT scan, an MRI, and a "24 hour" video EEG.
John had quit throwing up by this point, but was still lethargic. Yoshie had to carry him around on her back almost the entire day. He was still having a series of small seizures almost hourly.
John had his CT scan later that day. It's a terrible feeling to have to make your 1yr old go through all these tests that I've never even had to have. He slept right through it, so he didn't need any anesthesia. Yoshie stayed in the room with him, and I went to the control room and watched the pictures come through. I asked the technician there if she could see any abnormalities, and she again said she couldn't comment. That scared me.
I think we got the results later that day - all normal. That was a big relief, but we still had the more precise MRI the following day.

In the hospital - day 1

John had a bad reaction to the Ativan and started throwing up and hallucinating. And, he was still having a lot of seizures. It seemed like he was going downhill quickly. I'm really glad that we decided to stay at the hospital. At one point Yoshie said to the nurse, "he's not going to die, is he?". Her response was that they would do everything they could to keep that from happening. That wasn't a real reassuring answer. In hindsight, he wasn't in any real grave danger, but we certainly didn't know what to believe at that point.
In the afternoon, we met with the neurologist and explained everything. No, he didn't hit his head or drink any chemicals. It was a normal pregnancy and birth. He was healthy and happy. I ended up having to repeat this story to every doctor or nurse that walked in the room.
He was started on Depakene (Valproic Acid) immediately, and an EEG was scheduled for the next day. I really, really hated that they were giving him drugs. We normally wouldn't even give him Tylenol unless things got really bad. Now, they were putting drugs in him that I had never heard of, and obviously affected him a great deal.
He seemed to get a little better as the Ativan wore off. He was still having seizures, though. I had to go home to get a bag together so we could live at the hospital for a couple of days. When I returned, John was asleep.

ER

The urgent clinic recommended that we go to Emanuel hospital, and off we went. I had no idea at the time if my insurance would cover this hospital or not, but that was the least of our concerns. We had to wait quite awhile to get in to the ER. Once in there, we were told pretty quickly that he was having seizures and that he had epilepsy. This seemed impossible to me, as I've never even known anyone with epilepsy and I always assumed it was just something you'd know at birth if it were a problem.
The ER docs were consulting via phone with the neurologist, and since it was a weekend it was taking a long time. We talked to a couple of nurses there that made it sound like it wasn't a big deal, and something we could take care of with some drugs. They finally gave John some Ativan to stop the seizures. They were set to discharge us, with instructions to make an appt. with a neurologist as soon as we could. Even with the Ativan, John was still having head drops. I think Yoshie and I must have looked pretty worried, because they asked us if we wanted to get admitted to the hospital "just to make us feel better". We took them up on the offer.

How it all started

John's seizures came as a complete shock to Yoshie and I. John was a completely happy and healthy kid before all of this started. He was cognitively on track up through his 18mo check-up at least.

Yoshie first noticed something strange when John was around 22 months old. He seemed to blank out for just a bit when we were at a swimming party. I don't think she even mentioned it to me. In any case, we weren't at all concerned. At around 23 months, we started seeing his head drop every now and then. It was just like you sometimes see when young kids fall asleep while eating. Yoshie began to get concerned, but I brushed it off as nothing. She even called the pediatrician at one point, but was told that this was just normal for kids his age. She made an appt. anyway to see the Dr. just a couple of days before his birthday. About this time, we also started to realize that John wasn't learning words anymore. In fact, it seemed he really hadn't learned any words since about 18 months. He had a total vocabulary of about 30 words (between Japanese and English), which wasn't enough for an almost 2 year old. Still, we weren't overly concerned.
About 10 days before his 2nd birthday, the head drops started happening more frequently, and he started having several in a row. I think at this point we started to realize something was really wrong. On June 5, we went to Maya's dance recital, and John was having these episodes quite frequently. On June 6, I went out for my normal weekend bike ride, but turned around early just because I was worried about John. When I got home, he came up to me and blanked out, which resulted in him falling right on me. He was out for a couple of seconds. It scared me to death. We went directly to the urgent care clinic. He continued to have these little seizures during the seemingly endless wait at the clinic. Yoshie finally complained that he was "passing out" and they let us right in. He continued to have these little seizures while the doctor looked at him. Nobody ever called these "seizures", but she wanted us to go directly to the ER. This came as a shock, as we still thought maybe he just had an ear infection or something that was causing him to have a bad headache or something.