Done with Lamictal

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

John1

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

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

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

looking good

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

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

no seizures?

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

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

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

Doctor Visit

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

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

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

A lot has happened...

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

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

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

More Felbatol, Less Lamictal

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

MRI

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

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

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

EEG results

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

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

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

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

EEG

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

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

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

Another try with Felbatol

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

New neurologist

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

Happy 4th birthday!

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

Therapy

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

2 year anniversary

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

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

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

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

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

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

100mg Lamictal

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

125mg

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

more/less Lamictal?

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

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

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

1 year VNS anniversary

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

Increase in Lamictal

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

Last visit with neurologist

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

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

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

Jumpy

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

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

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

Rash, oh no!

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

John's neurologist is retiring

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

Tough couple of weeks but better again

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

EEG

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















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

More of the same

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

neurologist visit

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

Sickness, Christmas

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

Increase in Lamictal

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

Still doing pretty well

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

Up and Down

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

getting better again

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

More Lamictal, Halloween, pre-school

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

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

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

Still at 100mg Lamictal

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

No change yet with Lamictal, CURE

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

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

Lamictal not helping

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

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

More Lamictal

Upping the ampage of the VNS didn't seem to do anything, so our next step is to try to increase the Lamictal again. Today, we gave John 87.5mg, up from the 75mg that he's been on for quite awhile. Hopefully we'll see some improvement with the seizures, and no new side-effects. I truly hate to give him more meds, as he is doing pretty good right now. But, we need to keep pressing to get him completely seizure free so that his brain has a chance to heal. I'll update again soon.

On a side note, I was filling in his weekly pill box from a new prescription when I noticed that there were 2 different types of pills in the container. They were both white and almost the same size, but a slightly different shape. Kind of scary that a pharmacy would make a mistake like that. As it turned out, they were both 25mg Lamictal tablets. One was chewable (correct) and one was the non-chewable. So, it probably wouldn't be a big deal if John had taken it. He probably would have spit it out, though. The pharmacy was extremely apologetic.

VNS upped again

We saw the neurologist again yesterday. We knew going in exactly what our choices were, so it was no surprise. John had his VNS ampage turned up to 1.75mA, just as we'd expected. It sure would be nice if I could just program that thing at home. We didn't do anything with the on/off durations. Our other option was to increase the Lamictal. That of course is scary, since the increased Lamictal was a disaster before. But, maybe it needs to be a little higher now to work its magic in conjuction with the VNS. Even our neurologist admitted that this is nothing more than a big guessing game.
So, we'll give the VNS a week or two at this setting to see what happens. If there is no improvement, then we'll slowly increase the Lamictal. If that doesn't work, we'll have to do some more research. Our neurologist agreed that we can't give up until we have complete seizure freedom. He was not happy with "settling" for these minor seizures. Our neurologist has to be given huge credit for all he's done for John, and I feel very lucky that we just happened to end up with him due to insurance issues early on. However, he wanted us to research 3 more drugs to potentially try in the future, which left me sort of unsure of his guidance:

1. Felbatol - He mentions this one every time, even though he already had us try this one months ago. arrgh. It caused John to vomit many times per day and did nothing for his seizures.
2. Vigabatrin - It was only 6 months ago that this same Dr. told us that Vigabatrin should not be given to John, as it often will make John's type of seizures worse. I told him (again!) that we still think there is a good possibility that John has MAE (Doose Syndrome), and Vigabatrin is about the worst thing you can do for MAE. He never comments on this, and I suspect he's never had a patient with MAE. Vigabatrin also has a high incidence of causing a permanent narrowing of your field of vision - thus the reason the FDA has not approved it.
3. Clobazam - It's a benzo, and everything I've learned over the last year makes me believe that benzodiazapenes should never be used for anything other than short term relief. I think most neurologists would now agree with that.

So, after the Lamictal trial, we'll have to do some more research, as the 3 options given to us aren't promising at all. Yoshie and I agree that Zonegran is the logical next drug trial, and then Keppra. Also, another trial with the keto diet might be a good idea, since his seizures have changed. Another alternative is the "specific carbs diet", popular in the autism community. But, I'm getting ahead of myself. Hopefully this increase in the VNS ampage will do the trick. It's been a little over a day since it has been changed, and we haven't seen any improvement yet, but it's far too early to say that it won't help.

The good news this week is that John appears to be progressing with his speech. Over the last 2 days, he has occasionally repeated words to us which is a great sign. He's said 5 or 6 new words just in the last couple of days, and I get the feeling he is starting to understand that speaking can help him get what he wants. He's also started grabbing our hand and leading us to whatever he wants. He's never done that before and I think it is a good sign. Last night at Costco, he pointed to a cake and said, "Cake", completely unprovoked. I was stunned. I've taught him that word a hundred times but he's never repeated it. Of course he wouldn't say it again. Yoshie started giving him l-carnosine again about a week ago, and this might be what is helping him. Or maybe he's just feeling better. Yoshie has also found a new speech therapist that was recommended by her friend. This lady has a great reputation (and a long waiting list!). She was familiar with epilepsy and her brother even has a VNS. Sounds like a good fit. She can only fit us in 1 hour a month right now, but said we could videotape the session and practice the techniques ourselves. We're dropping the other private therapy for a number of reasons that I won't go in to.

Oh yeah, Maya also found a 4 leaf clover yesterday. Since this was the same day that his VNS was adjusted, we think it is a good sign. :)

no change

John's condition hasn't changed in the last couple of weeks, so we are going back to see the neurologist later this week. He's doing great, but we'll keep adjusting things until he's completely seizure-free.
Yoshie took John to the morning ESD class yesterday. That turned out to be far too advanced for him. Niether of the classes he's been to have been right for him - they've either been too advanced, or too slow. There isn't a "middle" class, so Yoshie talked to the teacher about trying to get more personalized therapy. Hopefully that will work out, though it appears that it isn't that easy to just change things once the IEP is written.
So far private therapy hasn't worked out, either. We'll keep trying.

back to 75mg Lamictal

John didn't respond at all to the last little bit of Lamictal we gave him, so we raised his level again to 75mg/day 5 days ago. It doesn't seem to be helping. If anything, his seizures are getting slightly worse and more frequent, though nothing bad at all. I think we need to give him another week at this level and hope things start to get a little better. If not, then we'll have to go see the neurologist again. I'd like to get another EEG done to see if anything has changed, but I doubt he'll be willing to do that. He'll probably opt to change the VNS settings.
I think John might be slowly progressing, which we are happy about. Certainly, he's not picking things up quickly like we hoped, but any progression is good news. I think he is starting to understand more, and he's attempting to say some more words. Everyone tells us that he looks better, so its probably true. I guess it's hard for Yoshie and I to tell since we are with him all the time.

A small setback

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

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

Starting the Lamictal wean

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

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

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

Still seizure free

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

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

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

4 weeks seizure free

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

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

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

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

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

2 weeks!!

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

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



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

Here is a picture of him taken this week:




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