Halloween

We went to Eric and Amy's for Halloween again this year. Maya had a good time trick-or-treating (after recovering from her fall). But John just isn't the least bit interested. He got frustrated right away and only wanted to put leaves in to the storm drain. So, he came back home early and had fun playing on the stair railing.

We were thinking that maybe spider-man would have been more appropriate than batman.

VNS is almost dead

John had a neurologist appt. on Thursday. We had his VNS checked and it is almost dead. He said that it likely isn't even giving the full charge right now. So, we have to decide whether to replace it or not. Since John is doing so well right now, we are going to hold off on replacing it. If the seizures come back, we will have it replaced quickly. We're hoping to hold off until the new version of the VNS comes out. It is much smaller, and has more features. It should be available in the next 6 months.
The neurologist is very concerned about John's inability to concentrate on anything. He kept trying to blame the Keppra, but I kept reminding him that John was already like that before the Keppra. I really don't want to decrease John's Keppra dose, as this drug has worked miraculously for him. We might go down on the Felbatol just a little, but he didn't think that would make much difference.
We talked about John's Pica (craving ice and other strange things). He agreed to have John's iron levels checked again, though we're not expected to see any thing out of the ordinary.
John had to have quite a bit of blood taken for all of the tests. It left him pretty worn out. And, we saw a little head-drop in the evening. So, I guess the seizure-free streak is over. But, that can barely be considered a seizure, and we haven't seen anything since, so all is well.
Finally, John has to have another EEG on Thursday. He hates those things. I really hope that we will see some improvement, but honestly I don't think we will.

John Climbing

I haven't updated in awhile. This time no news is good news. It's now been over 4 months since we've seen a seizure. It's kind of amazing really.

He's been making some progress with his speech, but it sure doesn't come easy.

Kindergarten is going OK. He was sick for quite a bit of the first few weeks so he missed a lot of school. But, he's fine now and seems to do OK. We really don't know what goes on at school, but the teachers tell us he's fine, and he seems happy when he gets off the bus in the afternoon.

He continues to climb everything. Here is his latest trick:

We also added to his climbing wall. He uses this all day every day:

1st day of kindergarten

John had his first day of kindergarten yesterday.

He was crying when we left in the morning...

, but was smiling when he got off the bus in the afternoon.

We have no idea how he did, but he came back wearing the same clothes, and with most of his lunch gone, so I guess he did OK.

100 days!

It's hard to believe, but we haven't seen a seizure for 100 days!

And, John starts kindergarten on Tuesday. He'll be in class from 8:30 - 2pm, then will ride the bus home. That is going to be a real change around our house. Hopefully he will enjoy it.

We just got back from a week-long trip to Canada. John did surprising well on the 11 hour car trips. He had a meltdown or two on the trip but was mostly very good. He got lots of chances to play in the water, and throw rocks in the water (his favorite thing).

John has completely stopped biting, and has mostly stopped pinching. When he gets upset, he sometimes goes to his room and lies down. He's even fallen asleep a couple of times. I'm glad that stage is over.

John continues to see a speech therapist a couple of times a week. He is doing pretty well with the PECS. He still isn't learning any vocabulary, though.

75 days

The big news is that John has now gone 75 days without a noticeable seizure. Woohoo!

Because of his success, we haven't changed anything with his medication or diet.
We haven't seen any real improvements in his development, which is a little disheartening. But, we have started some new learning techniques, including PECS (picture exchange system) which he seems to do pretty well with. We have pictures of some of his favorite things sticking to our refrigerator. When he wants something that is pictured, he takes the picture and gives it to us. We usually have him point to the picture, and say the word if he can.

As always, John loves the outdoors and spends a lot of time in our backyard. Here he is muddy from head to toe.




The bad news is that John's temper has gotten completely out of hand. He's happy most of the time, but when something upsets him he just spirals out of control and can't regain his composure for a long time - up to 30 minutes. He bites, hits, and throws things. If he can't find someone to bite, he'll actually bite himself. He's strong, so even I have a hard time trying to contain him when he gets in one of these tantrums. He bit our therapist pretty badly. He's bitten and hit Maya very hard. Of course, Yoshie gets the brunt of the abuse. Check out this bite to her arm:



John finished up his preschool last week. He'll start kindergarten next month. He currently gets in-home speech therapy twice a week.

Like I said, John loves to be outside. He had a great time playing at the beach last weekend:



When it was time to go, he threw his biggest tantrum yet. It was a real challenge to try to carry him off the beach. We had many astonished onlookers. After 30 minutes of this, he finally calmed down and we were able to do some shopping. But, it wore us out completely and we headed home early.
We visited the neurologist 2 weeks ago, and John was pretty bad in his office. So, he suggested that we trial B6 to see if it would help with the tantrums. John has been on 50mg of B6 for years, so we increased that to 100mg. It hasn't helped yet. We actually forgot the B6 one day and John seemed to have his best day, so we're considering trialing a week without any B6. It's probably just coincidence, but who knows? Our neurologist has said that the tantrums might actually be worse than the seizures for some people, so we might consider decreasing his meds and accepting a few seizures. We're definitely not ready to go there at this point. I'll take temper tantrums over seizures any day.

John Climbing

John has now been seizure free for over 5 weeks! We have seen some odd staring that worried us a little, but nothing that I would classify as a seizure. So, it's been a very nice break for us. Still, he is a handfull. He's incredibly active. It's hard to explain. I followed him around for just a few minutes with a camera and this is what I came up with. Keep in mind that he goes like this non-stop all waking hours:

In case you can't tell, he's super happy.

John's twice a week therapy started last week. So far, so good. In our efforts to engage him more, we are spending more time on the floor playing with him, so of course he likes it.

We also went back to the developmental ped. He had videotaped John at our last appointment, and he had met with other experts to discuss John. He also talked to our neurologist. He offered to prescribe Risperidone, and thought it might help John to concentrate more. We're not interested in that right now, as one of the side-effects is a reduced seizure threshold. We're not touching anything right now. And, of course we're still holding out hope that he can remain seizure-free and that in itself will eventually help him.

Happy 5th Birthday!

John turned 5 years old on Wednesday. This birthday was especially good, as it was his first seizure-free birthday since he was 1. I've been scared to say anything, for fear of jinxing it, but John has not had a single seizure since his first Keppra dose 3 weeks ago. I mean nothing, not even a tiny head drop or eye flutter! This is the first time we've ever seen any clearly noticeable change with a drug. And this is dramatic. We know all too well that the seizures will come back, but it's just been so nice to have this break.
Needless to say, as long as this streak continues, we will not be changing anything with John's diet, herbs, or drugs for quite awhile.

In other news, we had John's last IFSP meeting to talk about his goals and his summer school. He didn't meet a single goal for last year, so all his goals got carried forward. We did manage to get 4 days a week of summer school, but not at the school we were pushing for. It's only 4 weeks, so it wasn't worth a long fight.

We also have a therapist coming to our house twice a week over the summer. Her job is to provide speech therapy, and teach us parents how to incorporate the therapy into our everyday lives. Our first meeting is next week.

Keppra + kindergarten

John's seizures continued to get worse, to the point he was having a 45-60 second seizure almost every day, and even started having multiple long seizures in the same day. So, we didn't really feel like we had any choice but to start John on the Keppra. He now takes 1.2ml twice a day. Man, we hated to do that, but really felt like we had no choice. Check back soon, and I'll update on how the Keppra is working.

We also got to go visit John's proposed kindergarten placement for next year. We were pleasantly surprised. This is an autism program, which I think will be good for John. The program looked good, the teachers looked good, and the teacher/student ratio was excellent. The kids that we observed all were more advanced than John, but I guess they are a year older. Some of them seemed significantly older, so I wouldn't be surprised if some of them got a late start with kindergarten.
Since it was an autism program, we were a little worried that they wouldn't be experienced with seizures, but that wasn't the case. They knew all about the VNS, diastat, etc.
They also had separate stations of snack time - one for normal snacks, and one gluten-free. Since John is still mostly gluten free, that will be a big help.

IEP

Since John turns 5 next month, he is eligible for kindergarten starting this September. So, we had his IEP meeting last week. The purpose of this meeting is to determine eligibility, document goals for the coming year, and determine his placement.
You hear a lot of bad stories about IEP meetings, and parents having to really fight for services for their kids, so Yoshie and I prepared pretty well for this meeting. We had all of our questions printed out. And, we had our goals written down for each area.
Eligibility is a non-issue for John. He's had so many evaluations, and he is currently in the ECSE program, so there was no question that he needed special services. His main diagnosis is still "Other health impairment" or something like that. However, we went through the autism evaluation during this meeting and it was unanimous that he also qualified as autistic. That label opened up a lot more possibilities as far as placement.
Thankfully, the goals that Yoshie and I had come up with very closely matched the goals that they had come up with. There were a few goals that weren't specific enough or weren't measureable, so we had them re-word those. Once it became very apparent that we weren't going to sign off on their goals without some challenge, I thought it went very smoothly. Actually, some of their goals seemed a little too optimistic. I'm all for striving for high goals so I was happy to see that.
As for placement, they actually said one of our options was to be included in the normal kindergarten class right next to our house, and to be pulled out 20-60% of the time for special instruction. I never, ever thought they would offer that. But, Yoshie and I both felt that John would benefit from a more structured, intensive type program. They agreed and we ended up tentatively agreeing to an autism program at a school that is pretty far from our house. I don't like the distance thing, but the school sounds good. We are going to go check it out next week.

We also asked about holding John back a year, and they said we could do that if we wanted, but since they were providing a "free and appropriate" option, that we would not be eligible for any funding. I asked about repeating kindergarten next year if that turned out to be a good option, and they said that we COULD do that, though I got the feeling they would frown on it. The truth is that we can also drop out at any time, and re-enroll next year. So, we decided to give it a try (though we haven't signed anything yet and could change our mind after seeing the school).

Since we got the educational autism label, we decided that we did not need or want the medical autism label. So, we were able to cancel his all day autism evaluation that was scheduled for this week.

John has taken a turn for the worse this week, at least as far as seizures are concerned. He had a 60 second seizure 3 days in a row this week, which we haven't seen for a long time. These are the typical tonic/clonic seizures. One of these seizures was at preschool again. This is the first real seizure that they have seen at preschool and it scared them. I don't think they were prepared. You can describe a seizure all you want, but you can't really understand until you see one. After his seizure, they mistakenly tried to keep him awake. Poor guy was totally exhausted when we got there. We're glad they got to see one. We have revisited what his triggers are, and we even changed his class time to the afternoon since most of his seizures are in the morning.

John got his stitches taken out a couple of days ago. Unfortunately the wound didn't close up very well, so he's going to end up with a permanent scar on his forehead. Oh well.

We also started to see a behavior psychologist last week. This appt. was scheduled for us, and we were told that his job was to coordinate John's services. But, he seems like he is more valuable as a resource to help us with John's behaviors, so I think that is how we'll try to steer the sessions.

Last week, we noticed on several occasions that John had blood in his stool. He had not been constipated or anything, so it seemed odd to us. Because of John's medicine, we take these things a little more seriously then normal.
So, we had to bring a sample to the doctor, and John had to do the routine blood work again. Since he was already getting poked, we had them also do a Felbatol level at the same time.
This place, despite being a pediatric clinic, didn't have much experience with kids like John, so they messed up the first arm and had to re-do. Now I remember why we usually drive 30 minutes for his blood draws.
Anyway, the tests came back normal and we haven't seen any more blood, so that is a relief.

And, his Felbatol level came back at 55. They claimed the "normal" level was 40-100. That's crazy. The neurologist says the normal level is 30-60, and I think that is actually way higher than most doctors would say. So, John's pretty close to his limit.

Felbatol, herbs

Even though we know we are still destined to try Keppra, we are making sure that we given mono therapy every possible chance first. So, we increased his Felbatol dose to 12mg on April 21. I know I've said it before, but I do believe this is the highest he can go on this drug.
It's so hard to say if it is working or not. He does not have nearly as many of the longer seizures as he was having, but he does continue to have daily small seizures.
John's behavior has gotten quite bad, and this could also be from the high dose of Felbatol. Who knows? If he gets frustrated these days, he will usually start tipping over furniture or throwing things. He also pinches a lot, and will sometimes just run up and attack you. He also spits all the time now, and pees in inappropriate places (i.e. outside at the park). We want to stop all of these behaviors before they get out of hand, but we're not having much success yet.

The 2 longer seizures that have happened in the last month were also different than we've seen before. At preschool, they say he made a strange sound for 30 seconds while his eyes were fluttering. We've never seen him make any sound during a seizure. The other time he appeared to just be sitting down, and Yoshie realized that he'd been sitting for awhile and when she got to him, he was out and his lips were bluish like he hadn't been breathing. He didn't show any obvious signs that he was having a seizure, though. You wouldn't even know unless you were looking at his face.

We've also continued experimenting with the Chinese herbs. Sometimes he seems to improve after changing the formula, but we still haven't found the magic potion yet. The herbalist remains very caring, thoughtful, and optimistic, which is refreshing.

In the past month, we also tried a new speech therapist that was closer to our house. She thought John needed OT before speech. We've heard this before, and we've heard the opposite. We think he needs speech, so this new place might not work out.

A lot going on

I haven't posted in a long time, but not because nothing has been going on!
I'll try to catch up over the next few days and add some pictures, but the gist of the last month is:

• We increased his Felbatol to 12ml/day.
• He's only had 2 longer seizures in the last month, both of which were different than we've seen in the past, and one of which happened at preschool.
• Daily small seizures continue.
• Behavior has gotten far worse. We don't know the cause of this.
• We built a climbing wall in our living room! (pics coming soon)
• We spent 6 hours in the ER where John ended up getting some stitches in his forehead (not seizure related for once)
• John had blood in his stool, which worried us for awhile. But, the tests came back showing nothing was wrong.
• We had his IEP meeting and we got our tentative placement for the next school year.
• Not John related, but it was confirmed through a stress test that I have some sort of a heart abnormality when my heart is pushed to it's limit... :(

Check back soon!

We had John's Felbatol level checked last week. The normal range is 30-60, and John was at 46. Hmmm. I don't understand how he can be so far above the normal dose, and still have a blood level that is right in the middle. I guess all the running around he does keeps his metabolism in high gear. It's good news, as far as we are concerned, as it means we can go up on the Felbatol and can delay the Keppra for a bit longer. So, we increased his Felbatol to 11ml/day last week. We'll increase it again to 12ml later this week. As always, we see the scratching and sleep problems. But, those things should subside with time. We've learned to accept the hyperactivity that comes with this drug.
We've seen quite a lot of smaller seizures this week, but haven't seen a big one in 7 days now.

Yoshie took the kids to the zoo over spring break. They were standing in line to get the tickets and I guess John decided that was a good place to go to the bathroom - right in the middle of the crowd of people. He's been so good about going to the bathroom. I'm not sure what he was thinking. I suspect these embarrasing situations are going to get more numerous as he gets older. Hopefully we can put a stop to this sort of thing before it gets out of hand.

Over the past month, we've seen things pretty much remain the same. His big seizures (90 seconds) come every 2-7 days. His pattern of having them at consistent intervals appears to be done, and now we just never know when to expect one. He still has at least a couple of small seizures every day too.
We increased his Felbatol to what we think is his max a couple of weeks ago. He's now taking 10ml/day. We got his level checked on Wednesday to see if there is any chance we can go higher. We won't find out the results until Monday.
John remains happy and full of life. He's more hyper than ever, and as he grows it gets harder to take him places. His new thing is tapping everything he walks by. I think he is interested in the different sounds. He hits absolutely everything, including cars and even other people.
He continues to be a little gymnast, and turns himself upside down whenever possible. Yesterday, our blinds were all the way up. He was able to grab them by standing on the top of the couch. Then he preceded to walk up the window while holding on the the blinds. By the time I got to him, he was hanging upside down from the top of the window.
We got his speech evaluated at OHSU. I think this was his 4th speech evaluation. In any case, he of course qualified for their speech program and they also thought he would qualify for the autism program. He can't get the autism evaluation done for a couple of months, though. We also requested an evalution be done by the ECSE for autism, in hopes that he could get more therapy through them. They reluctantly agreed to do the evaluation, but we haven't gotten anything scheduled yet.
He's been going to the new OT and speech therapist once a week. It's been good, but it's a long drive for a 1 hour session, so we are also going to try a place closer to our house. We suddenly have a lot of options. Our strategy is to try them all and stick with the best. Still, these therapies are all just 1 hour a week. We're still hoping for more than that.
Our neurologist is both very busy and very popular, so our next appt isn't until August! We are probably going to have to find another neurologist, but I don't think we have a lot of choices.

John's cycle of having a bad day followed by a handful of good days has continued.
All last week John had a new game where I would hold him by his feet and he would swing back and forth under my legs. He got to the point where he wanted to do it all the time. And, he got quite good at throwing his weight around so he did all of the "swinging" himself. He looked like a little gymnast. Last Thursday, I noticed that he quit moving while doing this, and sure enough he had gone into a long seizure while upside down. I can't help but to think that I contributed to this one. It was 5 days after his last one, so I guess we should of expected it, but still it hits us hard every time. Since it was clear that he is not going seizure free with his current medicine, we decided to increase his dose the same day. So, he's been at 3.5/2/3.5ml of Felbatol since then.
We had 4 good days after that, including another seizure-free day. On the 5th day, he had another long one in the morning, right on schedule. This one was almost 2 minutes, so probably the worst one to date. He had another 75 second seizure in the evening. So, it appeared that the increased Felbatol was only making him worse. However, we haven't seen a single seizure of any kind since then which would make this his longest seizure-free stretch in a long time. We're expecting the next one on Sunday, and we'll adjust meds depending on how that goes. We can go one step higher before giving up.
The increased drug has affected his sleeping. He's been a bad sleeper since starting Felbatol, or maybe even before that. But, it has gotten worse. We're crossing our fingers that this will get better with time.
We finally had a session with a new speech therapist yesterday, and will be going there once a week for awhile. Yoshie still does daily therapy sessions too. But, he still needs more speech therapy, so we're investigating other options as well.

Johns situation continues to change, mostly for the better. Because of this, we haven't made any drug changes yet. It just seems like we need to wait for everything to stabilize before making any changes.
Since my last post, John started in this predictable cycle with one long seizure every 3 days. It was like clockwork. How strange. On the off days, he would just have a couple of very small head-nods. For whatever reason, he didn't have a big seizure last week on day #3, but picked up right where he left off on day #6 with a 95 second seizure. I'm beginning to wonder if he actually did have a seizure on that 3rd day in his sleep.
We also saw our first seizure-free day last week. He's come close many, many times over the last couple of weeks, but we've only had the one day where we didn't see any seizure activity.

Keppra?

We got a little snow around here last week, and the appointment that we had waited months for was canceled. Thankfully, we were able to reschedule quickly. But, in the meantime John had a pretty rough time. He has a long seizure almost every morning now, and sometimes has a 2nd one in the early afternoon. We've seen several over a minute now. These wipe him out for a long time. He sleeps for an hour or two, and then is just in a bad mood for another hour or two. The flip side is that his smaller seizures are rapidly diminishing. In fact, he has only had a couple per day lately. And, every now and then he'll get a day without a big seizure and only a couple of small ones. It seems possible that he could see a seizure free day one of these days.

We were able to get in to see the nurse practitioner a couple of days ago. She wasn't very impressed with the video that we had. I guess she's seen her share of seizures. We were concerned about John turning a faint blue with his seizures these days and she just said that this was normal. She says we don't need to worry unless he turns VERY blue over his whole body.
We asked about the tropic acid levels, and she just snickered. She's obviously not a fan of alternative therapies. She tried to backtrack a little but it was obvious she wasn't interested in pursuing that.
We also asked if we could get another overnight EEG so we could catch one of these big seizures. She thought it was a good idea, but after consulting with our main neurologist, they decided it wasn't needed. I don't understand the reasoning, and I can't help but to think that they just didn't have a convenient opening. To me, it really feels like they don't know what else to do for John.
He got his VNS turned up again. It's now at 2.25mA, and the magnet is set at 2.75mA. It doesn't bother John, so I guess the only downside is that the battery will wear out a little faster. It's worth it for the chance at better control.
We talked about what to do next. She mentioned going back on Lamictal, but we told her we weren't real comfortable with that. So, we are giving the VNS a little time, and will increase his Felbatol if there is any room to go up. Along those line, she ordered the standard bloodwork that goes along with Felbatol.
The big positive that came out of the appt. was her apparent disbelief in the amount of speech therapy that John is receiving. Finally someone that sees it our way. I guess her other job is with the Child Development Rehabilitation Center, so she has a lot of experience with this. She says John needs a lot more speech therapy (duh!), and she got the ball rolling on that.

Today, we got the blood work done. John had a 75 second seizure on the way to the lab and woke up just in time to get poked. So, he didn't have a very good morning. Most of the results are already in and were all fine. We'll have to wait a couple of days before we get the Felbatol level.
In the meantime, she and our neurologist discussed drugs and they feel that keppra is the logical next trial. Yoshie and I have been looking at Keppra for a long time and also feel this is a good thing to try. It's famous for causing behavior issues in children, but there are some things we can do to combat that (B6, slow titration, etc.). We hate, hate, hate to introduce another drug, but these seizures are scary and we don't feel like we have much of a choice.
We'll wait to start until we've exhausted options with the Felbatol, but I'm fairly certain we'll be trying it soon.
Here are some positive studies regarding Keppra. I won't post the negative ones (mostly behavour issues).
PubMed1
PubMed2
PubMed3

The never-ending roller-coaster ride continues on. John had a couple of good days. He went almost 2 full days without a big seizure (though still lots of minor ones). Then he had a big one again yesterday. I just don't know how big, as I missed it. He was crouched down getting some balls from under the sofa as he often does. It was quite awhile before it occured to me that he hadn't moved in some time. He was not seizuring when I got to him, but he must have just finished, as he was still limp and completely exhausted. He slept for an hour, breathing very deeply the whole time. Then, he had another tough hour after that before recovering and being back to his old self in time for Maya's 8th birthday party! His big seizure was at 1:30pm, and we only saw one other very minor seizure the rest of the day. So, as usual, he seems to release the same amount of seizure energy in any given day, whether it comes in lots of small seizures or just one big one.
We have an appt. with the doctor tomorrow to discuss where we go from here. The options are 1) increase the felbatol, 2) increase the VNS settings, 3) add some Lamictal back in, or 4) start a new drug. I think we'll suggest #1 if we can do it safely, then #2. I'm not sure we're ready to reintroduce the Lamictal, but we may end up having to do that in the end.

He's also starting music therapy this week. I think he'll enjoy that.

We're going to slowly start dropping the herbs and the dietary restrictions, one bit at a time. They haven't proven to be beneficial, at least as far as we can tell. Just how we do this will be dictated by what happens at the doctor appt. tomorrow. We are trying to do one thing at a time, so we know definately what the culprit is if something happens.

John had a seizure of over 1 minute on Friday, along with his normal couple dozen of small seizures. That was the longest we'd seen in a long, long time. Over the weekend, he also had 3 seizures of around 10 seconds in length. So, that obviously isn't good. But, the overall number of seizures has gone down to about 15 per day. And, his afternoons and evenings have been really great. We think he is understanding more and more. So, longer seizures, but likely better development. Good trade-off or bad? That depends on when you ask me!

We had a meeting with his EI teachers today. He isn't crying at all at EI anymore, which is just great. He also isn't learning anything, and those meetings often seem overly depressing. But, the fact that he goes there without crying and seems to enjoy it is a huge improvement as far as I am concerned. He is keeping his 1 on 1 aide, which is good news of course. John had a 5 second seizure during the meeting. I think it was a bit of a shock to the teachers, as they had only heard of the longer seizures and haven't had to experience one yet. All discussion stopped and we had to revisit what to do in the classroom if he should have a long seizure. I'm really glad they got to see one, even if it was a minor one.

John has been at 1000mg of Felbatol for 10 days now. The general range for kids and Felbatol is 15-45mg per kilogram. John is 16kg, so this would mean his range is 240mg - 720mg. So, he is already way above the normal maintenance dose. But, we don't see much in the way of side-effects, so I wouldn't be too surprised if we end up going higher still. We'll find out at our appt. next week.

I mentioned that I caught a video of John having a seizure. It isn't that pleasant to watch, but I thought I'd post it so I can get the opinions of others familiar with seizures. This seizure seems mild, with almost no convulsing. He doesn't even drop his spoon. He even blinks during the seizure. Does this still look like a generalized seizure? It probably is, but it just seems different than the long seizures he used to have. The video can be found here (6mb).

John is now on his maximum dose of Felbatol, and he's still having many smaller seizures and some bigger ones. He was having a large seizure every morning, so I followed him around with a video camera on Dec. 31, hoping to capture a seizure so we could show the neurologist. After about 20 minutes, he sat down to eat and I turned off the camera. In that very instant, he went in to a seizure. I quickly turned on the camera and got the last 20 seconds or so of the seizure, but this one was about 35 seconds which is the longest we've seen for awhile. After that, he went 2 full days without a longer seizure so we were really hopeful that the Felbatol was finally working. However, he did have another one last night and a couple today. These were more of the 10 second variety, but still frustrating. I guess the Felbatol is not going to be the answer. I don't really know where we go from here, but we have an appt. in a couple of weeks so we'll find out then.
Everyone is back to school and work. John did OK his first day back, but did have a lot of "head drops", and we know they don't catch everything. I don't know if he'll lose his 1 on 1 aide soon, but we certainly hope not. Our meeting with the EI team before the holidays got canceled, so we'll be meeting again to discuss.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

101 posts

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

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

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

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

Cyberonics

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

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

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

Done with Lamictal

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

John1

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

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

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

looking good

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

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

no seizures?

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

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

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

Doctor Visit

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

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

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

A lot has happened...

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

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

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

More Felbatol, Less Lamictal

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

MRI

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

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The myelination pattern is normal. There is good gray white matter differentiation. No intra-axial or extra-axial fluid collections are present. There is no evidence of cortical dysplasia, or migrational abnormality and the medial temporal lobes are symmetric without abnormal signal. There is no mass effect or midline shift. The ventricals are normal size.
Impression: Unremarkable MRI of the brain.
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Today marks 2 weeks that John has been at 480mg of Felbatol. So, we're waiting for the OK to increase his dose again. He can go up to about 675mg day. Since it doesn't appear to be doing anything at this level, I don't really expect it to suddenly start working at a higher level, but you never know.

EEG results

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

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

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

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

EEG

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

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

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

Another try with Felbatol

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

New neurologist

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

Happy 4th birthday!

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

Therapy

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

2 year anniversary

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

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

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

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

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

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

100mg Lamictal

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