VNS

We arrived at the hospital just before 7am, got checked in and everything without any problem. John had to take some drug to calm him, but since he couldn't have any carbs, we had to mix it in some diet pop that we had brought. Unfortunately, the drug had a very strong taste and John wouldn't touch it at all. So, they had to stick a syringe thing up his nose to get the medicine in him. He was screaming through all of that, but as soon as the medicine got in him he instantly calmed down. Within minutes he started acting completely drunk. It reminded us a little of how he was when he was first put on high doses of his seizure medication.
We carried him towards the operating room, but at one point they stopped us and said we couldn't go any further. He was so out of it by that point that he didn't mind leaving us behind. That was about 8:30am.
The wait was brutal, of course. At around 10:30, one of the nurses came by and said they were done and he did great. That was a big relief. A couple of minutes later one of the doctors came by and said everything went fine, and that he was in the recovery room and somebody would come get us when he woke up. Just then, the nurse came in and told us that he was already awake. So, we went to the recovery room and he was being held by a nurse. He was still wearing his pants and slippers! He was completely out of it, but I think he knew when Yoshie was able to hold him. His incisions didn't look very big at all. I was expecting them to be much bigger for sure.
After staying there for a few minutes, the surgeon came in and repeated that everything had gone great. He said John's vagus nerve looked good and was easily accessible. He said something about the impedence being 1-1, which is the best. I'm not sure what that means, but I'll look it up later. After they were sure John was stable, we went to his room. After that, it was just the typical hospital experience. He did develop a big bruise on his belly that concerned the nurse enough that the neurosurgery nurse had to come up to take a look at it. We just monitored it closely to make sure it didn't get any worse - it didn't.
So, everything went fine and we were able to come home today. After being home for a few hours, John vomited a couple of times. Yoshie called the nurse and they didn't sound too surprised. They said to call back if he continues to vomit.
One interesting thing is that John had his best seizure day in a long, long time today. That was a bit surprising. It could be because of the Tylenol. Or, it could be the antibiotic. Or, it could be that he just wasn't very active. Or, as always, it could just be chance. We were expecting the seizures to get worse. That certainly didn't happen.

All set for VNS

Well, we're all ready for tomorrow's VNS surgery. We're scared of the surgery, but excited to have a chance to help his seizures. His temperature was totally normal today, which is a big relief. He was at 100.1 yesterday morning, though still not acting sick at all. The surgery is scheduled for 9am, and we are checking in at 7am. Hopefully, it will be all done by noon. Yoshie had to cook all of his keto meals for the next couple of days. The plan is to have her stay overnight tomorrow, and I'll come back home to stay with Maya. We expect to be able to come home on Tuesday.

Seizure-wise, he had another tough week. He probably averaged around 30-32 cluster/day this week. Today was the worst at 37 clusters (70 seizures).

I finally picked up his Lamictal prescription (we've been using the samples until now). I was shocked to see the price of this drug was $804 month, even at this low dose. Thankfully, I have good insurance and it only cost us $20. I really feel sorry for all those people without any insurance.

pre-op

Today we went for John's pre-op appt. His VNS surgery is 1 week from today. It was mostly just answering questions and doing some paperwork. He did have to give blood again. We were able to see the post-op area, etc. It's sort of nice to know exactly what to expect next week. John is scheduled for first thing Monday morning. We have to be at the hospital by 7am. I suppose by lunchtime, it will all be done.

There hasn't been a lot of changes with his seizure activity over the last few days. He is still having a lot more frequent drops than we've ever seen before. There might be a slight trend towards fewer clusters and more actual seizures. Again, we don't know if this is good or bad, but I think this is due to the Felbatol finally getting out of his system. He only had 22 clusters today, which is his best since Mar. 7.
Unfortunately, John had a 99.8 temperature again this evening. We really, really don't want him to get sick this week. We cannot easily reschedule this surgery, due to our changing insurance plan.

Since things haven't leveled off yet, we're still cruising at a 2.5:1 ratio with the diet. The glucose numbers finally have climbed into the upper 60's, as we would expect at this ratio. It always takes about a week after a diet change to actually see any change. Ketones are lower, as well. They are now generally in the 3-4 range at night. This is a good range for many kids for seizure control. Not so for John.

Just to prove that John is a happy guy, here is a video of him helping with the housework.

lots of seizures, but no rash

The bad news is that John is continuing to have 30+ seizure clusters per day. This is far more than he ever had before the Felbatol. He hasn't been on Felbatol for 5 days now, so it should be almost completely out of his system. It's very discouraging that he didn't get better as the drug levels went down. It's looking like his brain "learned" to have these extra seizures, and this is just the way it's going to be now.
The good news is that we haven't seen a rash yet from the Lamictal. The longer he goes without a rash, the less likely he is to develop one at all. I guess the other good news is that these seizures don't seem to wipe him out at all. He's perfectly happy in-between the seizures.

Our new cat (Luna), got sick last week and we had to take her to the vet. I find it very interesting that there seems to be a lot more compassion from the staff at the vet (for a simple bronchial infection) than we've ever seen from John's doctors. The vet even called to see how she was doing. No doctors have ever done that for John. BTW, Luna is fine now.

felbatol out, lamictal in

John ended up having 40 seizure clusters on Friday. It got so bad, that I took the afternoon off work to come help watch him. He was completely fine between the seizures, so we didn't give him any "emergency" drugs or take him to the ER. In both cases, he would just get a big dose of benzodiazapenes, which would wipe him out and wouldn't help his seizures anyway. So, we just tried to keep him safe. We knew that the weaning of the felbatol was the culprit in this, so we probably should have given him a little felbatol. We couldn't bring ourselves to give him any more of that drug, though. So, he officially went drug free again on Friday.
He got slightly better on Saturday (33 clusters), and again better on Sunday (27 clusters). This is still far worse than what I consider his baseline of 15 clusters and 40ish seizures. Hopefully he'll continue to improve.
He started Lamictal on Sunday. It will take a couple of months to know if it's doing anything. Right now he takes a tiny pill only in the morning. At this point, we'll consider it a success if he doesn't have a bad reaction to it.
It seems like maybe his seizures are changing a bit again. I think he's having more absence (staring) seizures. Plus, some of his seizures now are just a general tightening of the muscles, rather than a drop. New seizure types either mean he's just getting worse, or it sometimes means that the brain is trying to rewire, which is good. So, it could be bad or good. I doubt it's due to this miniscule amount of Lamictal he is taking - but it could be. Lamictal takes ~6 hours to reach peak levels in the blood, and has a half life of 30-36 hours. So, I guess we can hope for a gradual improvement over the next couple of days.

bad drug

Felbatol has turned out to be a real nightmare. We are trying to get rid of it, but with all seizure medications, you cannot just quit taking the drug. We were told that the absolute fastest we can get rid of it is a 200mg reduction every 3 days. We intend to follow this.
John goes through periods now where he will have a seizure cluster every 5-10 minutes. His 4 worst days ever (by # of clusters) have come in the last 5 days. Now we are just really hoping that he will get better as he comes off of the drug. So far, he seems to be getting worse, if anything. He's had 29 clusters each of the last 2 days, and today looks like it could be far worse than that.
As for the diet, he's down to a 2.5:1 ratio. We went down further because his ketones are still sky high (5+) and his glucose is super low (58). He's in a deeper ketosis now than he ever was at a 4:1 ratio. It's obviously not doing anything for him. It's possible it's making him worse, though, and that is why we lowered the ratio. There is no explanation as to why his ketones remain so high. I suspect it is some undocumented side-effect of the Felbatol.
John also threw up again yesterday. He's vomited more in the last week than the rest of his life combined.

31 seizure clusters

John's all time record for seizure clusters was set just a few days ago at 26. Yesterday, he had 31 clusters. That is basically a cluster of seizures every 20-25 minutes all day long. He also ended up with 96 total seizures, which is pretty close to his worst ever. We're hoping that these are still a result of the Felbatol, and that he'll get better as we come off of this drug.
Interestingly, his blood glucose was 60 again, and his ketones were 5.6. We would never expect numbers like that on a 3:1 ratio. I have no idea what is going on. It MUST be some reaction to the drug.
We're taking out half of his dose today, so hopefully we'll see some improvement.

John also had his hearing checked today. That is standard procedure for speech delayed kids. His hearing was fine, as we already knew.

Done with Felbatol

John threw up again today, 90 minutes after his morning Felbatol dose. I called the neurologist and he said that we should go back to the lower dose, give his stomach a few days to recover, then start with a new drug - Lamictal. It will take 10 weeks to get to the therapeutic dose of Lamictal, so it will be well after the VNS surgery before we know if it is working or not. Thats Ok. It's clear now that the VNS is the logical next step, so we're ready to do it.
I also talked to the dietician today, and she agreed that it is time to wean the diet. We are going to go down at .5 increments every couple of weeks and monitor him closely. Once he's at a 1:1 ratio, we'll quit weighing the food, but still keep him away from heavy carbs for awhile.
I got Yoshie a cat for her anniversary present, today. We've never had a pet, so we'll see how it goes. She seems very good natured and friendly so far, and Yoshie and Maya are really happy about this. John doesn't seem to care one way or another. He sometimes pets the cat, but sometimes pulls her tail. :) The good news is that the (nameless) cat seems to tolerate this OK.

2 new records

We upped the Felbatol dose Sat (Mar. 5) to 600mg/day. Sunday morning he threw up everything about 90 minutes after he took his morning dose. He also had a slight temperature (99.5), but no other sign of sickness. The same thing happened last week when we increased the dose from 200mg to 400mg. I'm certain now that this is more than just coincidence. He is still refusing to eat some of his meals, and is not napping as usual. So, we're definately seeing some side effects. We could live with the side effects if this drug were helping his seizures. However, it seems that his seizures have only gotten worse - he had a record 26 clusters yesterday. If today is equally bad, I think we'll have to start getting rid of this drug. I'm certainly not willing to go even higher on the dose at this point.
We're still trucking along at a 3:1 ratio with the diet. Yoshie made his old favorite, "chips & salsa" over the weekend and I think he really liked it. These chips are just ground up almonds, fried in oil. He gets 2 or 3. And, the salsa is actually a couple of grams of real salsa mixed with flax and olive oil, and a tiny bit of salmon (for protein). He also gets his customary whipping cream to get to the required fat.
With this lower ratio, we would expect his blood glucose to go up, and his ketone level to go down. Last night, his ketone level was a very high 5.6, and his glucose was a very low 56. In fact, this 56 was the lowest we've EVER seen. I suppose this could be related to the fact that he isn't getting enough calories right now. We can't let this continue. This furthers my thinking that the diet just isn't working for John, as those numbers are exactly what we've been striving for for months. Now, we finally get them, and John has his worst day ever (as far as clusters).

More Felbatol

I'm sorry to report that the increased Felbatol dose isn't helping his seizures at all. Furthermore, the side effects are getting more pronounced. He now is not interested in breakfast at all. We really have to force him to eat anything. He already gets so little, that this is really worrisome. If this side effect doesn't wear off soon, I think we'll have to quickly wean the diet so that we can give him other foods that he would enjoy.

We saw his neurologist again yesterday. It was a dissappointing visit, as he really said he doesn't know what else to do at this time. So, we are going to keep increasing the felbatol dose in hopes that it will work at some level. He told us to keep going up until John's quality of life deteriorates too much, then we'll back off some. The suggested maximum dose is 45mg per 1kg of weight. John is 13 kg, so he "should" have a max dose of just under 600mg. As of today he is on 600mg. However, he wants us to go up to 900mg if possible. That is very scary. He also told us that one of his patients died because of Felbatol. This girl also had Lupus, so it's a different situation, but still scary.
John also had to give some blood again yesterday. He cried, which is a good thing (at one point he was so drugged up that he didn't even care).

John has been doing a great job wearing his helmet. He doesn't seem to mind at all anymore, which has really made things easier for everyone.