John Kenta

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...

October started rather poorly, with John losing the good days of 20ish seizures. We held off making any changes to see if he would get back ...

John started September having 35-45 seizures per day. He was on 60mg of Topamax, 7.5mg Tranxene, 200mg B6, 175mg depakote, and a 2:7 ratio ...

We really believed that John was a perfect fit for the ketogenic diet. I think we both thought he would go seizure free in the first couple ...

July started very terribly. He had 77 seizures on July 1, which was his worst ever by far. Then, he had a fever of 102 on the 2nd. I didn...

We started keeping very accurate records of every seizure that we saw. This required us to watch John all of his waking hours. Things varied...

We came back home on Wed., Jun 9. We were giving him 300mg of Valproic Acid/day, as instructed. John was pretty unstable on his feet, and qu...

I turns out that a "24 hour" EEG is not necessarily 24 hours at all. They just want to make sure that they get a good sampling of...

John had his MRI in the morning. This wasn't one of those "open" MRI's. It was just a tube that his head would slide in ...

Of course everything still seemed like a bad dream at this point. And, since they wake you up every couple of hours in the hospital, Yoshie ...

John had a bad reaction to the Ativan and started throwing up and hallucinating. And, he was still having a lot of seizures. It seemed like ...

The urgent clinic recommended that we go to Emanuel hospital, and off we went. I had no idea at the time if my insurance would cover this h...

John's seizures came as a complete shock to Yoshie and I. John was a completely happy and healthy kid before all of this started. He was...