John Kenta

John has now been seizure free for over 5 weeks! We have seen some odd staring that worried us a little, but nothing that I would classify a...

John turned 5 years old on Wednesday. This birthday was especially good, as it was his first seizure-free birthday since he was 1. I've ...

John's seizures continued to get worse, to the point he was having a 45-60 second seizure almost every day, and even started having mult...

Since John turns 5 next month, he is eligible for kindergarten starting this September. So, we had his IEP meeting last week. The purpose...

John has taken a turn for the worse this week, at least as far as seizures are concerned. He had a 60 second seizure 3 days in a row this w...

Last week, we noticed on several occasions that John had blood in his stool. He had not been constipated or anything, so it seemed odd to ...

Even though we know we are still destined to try Keppra , we are making sure that we given mono therapy every possible chance first. So, w...

I haven't posted in a long time, but not because nothing has been going on! I'll try to catch up over the next few days and add some...

We had John's Felbatol level checked last week. The normal range is 30-60, and John was at 46. Hmmm. I don't understand how he ca...

Over the past month, we've seen things pretty much remain the same. His big seizures (90 seconds) come every 2-7 days. His pattern of ha...

John's cycle of having a bad day followed by a handful of good days has continued. All last week John had a new game where I would hold ...

Johns situation continues to change, mostly for the better. Because of this, we haven't made any drug changes yet. It just seems like we...

We got a little snow around here last week, and the appointment that we had waited months for was canceled. Thankfully, we were able to re...

The never-ending roller-coaster ride continues on. John had a couple of good days. He went almost 2 full days without a big seizure (thoug...

John had a seizure of over 1 minute on Friday, along with his normal couple dozen of small seizures. That was the longest we'd seen in ...

John is now on his maximum dose of Felbatol, and he's still having many smaller seizures and some bigger ones. He was having a large ...

John continues to have longer seizures on most days, but we haven't seen any over 10-15 seconds since last week. He had a great Christma...

The battery was fine. So, the increase in seizure activity means something else is going on. We asked the doctor if maybe John just needed...

Well, John has continued to have lots of little seizures, and at least 1 larger seizure in the morning. This morning he had a 15-20 second ...

John's seizures have continued to get worse. Yesterday he had two longer seizures in the morning that scared me enough that I took the ...

John seems to be understanding and vocalizing a little better this week, but the seizures are getting worse again. Both the number and stren...

Wow, I can't believe I've posted 101 times already. I should probably figure out a way to back this stuff up! Anyway, John has been...

Some interesting news regarding Cyberonics over the past week. Cyberonics is the company that makes the VNS. First, billionaire Carl Icahn p...

We continued to lower John's Lamictal, to the point that his last dose was Friday night. He is suffering some withdrawal symptoms, incl...

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 1...

John's seizures have continued to increase in number since my last post. They have also increased in intensity again. He has had many da...

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...

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 seizu...

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 ...

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 re...

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 ...

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'...

I guess getting an appointment for an MRI is nothing like getting an appointment to see the neurologist. The neurologist has a 5 month waiti...

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 ...

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...

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 fai...

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...