Christmas

Yoshie and Maya are in Japan this week, so John and I have been having fun playing with our Christmas toys.














We even got a little snow on Christmas day, which John loved. I hope it snows again soon!










John's seizures are slowly but surely getting worse. He has at least one cluster every day, with the seizures getting a little stronger. He sometimes laughs after the seizures. I guess they feel funny. We raised his Felbatol last week, and that clearly didn't help. So, we'll begin lowering that again soon unless the seizures disappear. I'm sure that John will get his VNS replaced in the next few months.

seizures return

John has started having seizures pretty much every day now. They are still really small, but come in clusters again. We can only assume that this is due to the VNS battery running out. So, we'll probably have to get the battery replaced sooner than later.
In the meantime, since it is getting worse, we felt we had to do something so we have added back a little of his Felbatol that we recently removed. If this doesn't stop the seizures, then we know the Felbatol wasn't the key and we will start removing it again.
Outside of that, everything is going well. John still seems to enjoy school. He started shaking his head for "No", which is something they must have taught him in school.
We have still been having some in-home speech therapy, which has been great. And, we finally got John in to the speech therapy at the local university. He'll be going twice a week (after school) for the winter term.
We made yet another trip to the urgent care clinic last Friday, after John got his feet tangled in Christmas lights and fell head first on to the piano (we think, as we didn't actually see it). He cut his head, and it was bleeding like crazy. We had no idea how bad it was, but by the amount of blood that came out I assumed it was bad. But, after they cleaned it up, it was just a little over a centimeter long and didn't even require stitches. I guess head wounds just bleed a lot.
And we actually got accepted for a grant to install a video camera in his room so that he can sleep and we can monitor him and record any activity. We'll try to get that installed shortly.
Yoshie and Maya are off to Japan next week, and I have the whole week off work to take care of John. Should be fun!

doctors comments

Our neurologist got back to me on a Friday evening, just an hour after I e-mailed him. Wow.

He said the high felbatol level was not worrisome, as it was taken just a couple of hours after John was given a dose. The reference range refers to the level first thing in the morning. Still, he said to go ahead with our reduction of the Felbatol. So, we took out 1 ml in the morning, starting yesterday. We're crossing our fingers that he remains seizure free. I think he will.

As for the EEG, he said it was a big improvement over the last one. In his words: "I'm pleased to see that it's tremendously improved from John's prior studies, including the video-eeg from 2004. His waking background looks dramatically better than before."
Wow, that is great news! It's the first time in 3 years that we've heard that things are better than before. Let's hope he's turned the corner and will continue to improve.

As for the focal point, he said that the focal point is for discharges and may or may not also be a focal point for actual seizures. If the seizures return, we'll get an extended video EEG to see if the seizures also originate from this focal point. Still, it's definately different than his previous EEG's, where the seizures and discharges came from everywhere. He also said that he took a look at John's most recent MRI and there was nothing abnormal in that area of the brain.

EEG results

His EEG showed some interesting things. It's still very abnormal, which is no surprise. But, it looks like he has more discharges while sleeping, which was a bit of a surprise to us. We've never seen a seizure at night.
The big news is that it looks like there might actually be a focal point!! He's had quite a few EEG's, and this is the first that showed any indication of any focal point. Of course a focal point is really big news, because if you can clearly identify the exact focal point, it's possible to actually go in and remove that part of the brain. But, that's a long way off and we don't want to get ahead of ourselves. We're hoping that they might be willing to do further testing, though.

Here's the full text of the EEG report:

Introduction: This is a routine electroencephalogram performed on a 5-year-old with history of seizures since age 2, which have significantly improved with vagus nerve stimulation [note: not true, it was the Keppra!]. Last seizure was reported May 2007. Medications include Keppra and Felbatol. The standard 10-20 system of electrode placement was used with one channel of EKG monitoring.

Description of the record: During periods of relaxed wakefulness, there is a posterior dominant rhythm which consists predominantly of 7Hz activity of moderate amplitude, with lower amplitude faster frequencies present symmetrically in the anterior head regions. Reactivity to eye opening/closure is not demonstrated.

Although waking background is somewhat obscured by muscle artifact particularly in the frontal regions, only rare to occasional sharp and slow wave discharges are seen with phase reversal at FP1. These appear to increase in frequency as likely drowsiness is entered, suggested by decrease in movement and muscle artifact.

During sleep, these discharges occur frequently. Although at times they are near-continuous, occurring at 1 to 2 hertz, there are usually several seconds in which no discharges are noted. At times there is a broad field to these discharges, spreading to the left temporal and central regions.

Vortex sharp waves and spindle activity of sleep are seen.

EKG shows normal sinus rhythm throughout the recording.

Impression: This is an abnormal EEG for age recording wakefulness through stage II sleep due to mild diffuse background slowing, and left frontopolar epileptiform discharges which increase with sleep.

Clinical Correlation: The diffuse background slowing suggests diffuse cerebral dysfunction, though not specific as to etiology. The left frontopolar epileptiform discharges suggest a focal and possibly rapid secondarily-generalized mechanism of onset to the patients seizures.

Blood results

I just got John's blood test results:

White cell count, hemoglobin, hematocrit, MCV, RDW, Platelet Count, Iron levels, and Lead levels were all fine.

His red cell count was slightly low at 3.87, with a normal range of 3.90 to 5.30.

MCHC was slightly high at 35.6, with a normal range of 33.4 to 35.5.

His Keppra level was 9, where the range is 5-30, so he's still on a really low does of that.

Felbatol was 79 ug/mL, with a reference range of 30-60. So, he's on a LOT of Felbatol. We have already talked about lowering this a little, and I suspect we'll be advised to start that reduction shortly.

So, outside of the high Felbatol (which was absolutely no surprise to us), everything looks pretty good. We're happy to see the lead and iron levels checking out fine.

EEG

John had another EEG this morning. As always, it was pretty traumatic for him to have to lay there while the leads were glued on. It gets harder each time, as he gets stronger and louder. We had to wrap him up tight and have 3 of us hold him down just to get the leads on. It was pretty torturous for about 20 minutes. He finally wore himself out and fell asleep.
The EEG itself clearly showed seizure activity. The technicians can't tell us anything, of course, but anyone can tell that when the lines go from almost flat to a wild storm that something is not right. We'll get results next week, but if I had to guess I'd say it was still very bad, but probably a little better than last year. At least this year we could see a few stretches that lasted 20 seconds or more without a discharge.
I have no idea what the doctor will recommend after this. I don't know if he will want to go up on drugs, quickly replace the VNS, or to just leave things alone as John is doing really well these days.
Hopefully he won't need to do another EEG anytime soon. That is honestly the most upset I've ever seen him. He was so worn out that he had to miss school completely. But, true to form, he's back to being completely fine this evening. His parents are still pretty worn out, though.

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.