John Kenta

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...

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. Joh...

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 h...

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 no...

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 sei...

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 ...

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...

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 s...

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 ...

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 Joh...

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 turne...

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 ...

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 does...

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 w...

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...

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 agai...

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 ...

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 mir...

John continues to do amazingly well. He still has not had a single seizure since last Monday morning. And, he feels great. He's basicall...

John hasn't had another seizure since my last post!!! It's now Wednesday afternoon, and he hasn't had a seizure since Monday m...

We're scared to say anything, as we know things can turn bad quickly. But, John has continued to get better and better. He has only ha...

John did have another grand mal seizure early Friday morning. This one was only about 20 seconds. That's it for the bad news. Since John...

Well, we knew things were risky 3-6 days after a decrease in the Lamictal dosage. We decreased his dose on Sunday night. Sure enough, 3.5 da...

Since John's GTC, we lowered his Lamictal dose to 100mg. I was sure that the doctor was going to scold us for that. The first thing I ...

John's 1 year anniversary of his epilepsy diagnosis came and went without any fanfare. His seizures are obviously worse now than they w...

Thursday night, I was all ready to finally post a positive report. He had 4 days of improving seizure numbers. Thursday, he had the fewest...

It used to seem that every Friday was a bad day for John. We never did know why, but it happened enough times that we came to expect bad da...

I'm 100% certain now that the involuntary opening of the mouth is a new seizure type. This would be a partial seizure, which John has no...

By the numbers, last week was a good one. He had 300 seizures from Sunday to Saturday. That was his best week since early February. As alway...

As of yesterday, John is taking 75mg Lamictal per day. The therapeutic range for Lamictal is 5-15 mg per kg. John is about 13kg, so he is ...

At some point, things have to start getting better. It certainly hasn't happened yet. This week was another new record for the number...

John had 48 seizure clusters 2 times this week, which ties his worst days ever. This was also easily his worst week ever in terms of seizur...

Things haven't changed much since the last time I updated. He continues to sleep poorly. He was up in the middle of the night 5 of the...

The VNS isn't helping at all at the current settings. That first day, it seemed like we could stop the clusters. Now I'm not so su...

John woke up at 4:15am and immediately started having seizures every 5-10 minutes. He has done this before for an hour or two, but then will...

It seems that the side-effects of the Lamictal may be wearing off. He slept most of the night for 2 nights in a row now, and is actually tak...

Despite our best efforts to keep our house free from dangers, John still manages to have seizures in the worst possible places. Last night ...

We increased John's Lamictal to 10mg a few days ago, and this seems to have further aggravated his sleep problems. He routinely wakes up...

I always read about kids that are "back to their normal self" 2 or 3 days after the VNS surgery. I would say John is 80% back to ...

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 ...

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 seizure...

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 pape...

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 ha...

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 compl...

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 taki...

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 clus...

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 l...

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...

I'm sorry to report that the increased Felbatol dose isn't helping his seizures at all. Furthermore, the side effects are getting m...

John has been on Felbatol for 1 week now. Based on seizure count alone, he has done progressively worse this week, culminating with 76 seiz...

John's cold is better, and we're still not seeing any improved seizure control, so we made the gut-wrenching decision to start him o...

Since we really haven't seen any improvement on the diet at the 4:1 ratio, we made the tough decision on Sunday to start weaning the die...

We are now 2 weeks in to a 4:1 ratio. We haven't seen any change with the seizures, but we also haven't seen his blood ketone level ...

Well, all of the entries prior to this one were written after the fact. From here on out, I'll try to post on a regular basis so the inf...

We continued to wean the Topamax in January. On January 25, John was officially drug-free!!! He did have a bad stretch of seizures in the ...

We continued to wean the tranxene in December. We saw a slight increase in seizures with each step, but nothing dramatic. And, after a few...

The main theme of November was John's ongoing constipation issues, and very huge number of daily seizures. We also spent the entire mon...