John Kenta

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 wa...

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. An...

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 ...

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 ...

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...

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'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...

As expected, the extreme hyperactivity that we saw after the last med increase subsided pretty quickly. And, right on schedule, the number o...

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, bu...

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 w...

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 hi...

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 h...

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...

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...

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 cour...

I haven't posted in awhile, mainly because nothing has really changed. John is still taking 150mg of Lamictal per day, and is continuin...

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...

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 ...