John Kenta

Monday, November 27, 2006

101 posts

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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...
Wednesday, November 22, 2006

Cyberonics

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Some interesting news regarding Cyberonics over the past week. Cyberonics is the company that makes the VNS. First, billionaire Carl Icahn p...
Monday, November 20, 2006

Done with Lamictal

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We continued to lower John's Lamictal, to the point that his last dose was Friday night. He is suffering some withdrawal symptoms, incl...
Thursday, November 09, 2006

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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...
Friday, November 03, 2006

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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...
Monday, October 23, 2006

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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...
Wednesday, September 27, 2006

looking good

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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...
Thursday, September 21, 2006

no seizures?

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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 ...
Wednesday, September 20, 2006

Doctor Visit

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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...
Thursday, September 14, 2006

A lot has happened...

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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 ...
Thursday, August 17, 2006

More Felbatol, Less Lamictal

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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'...
Monday, July 31, 2006

MRI

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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...
Thursday, July 20, 2006

EEG results

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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 ...
Saturday, July 15, 2006

EEG

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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...
Monday, July 03, 2006

Another try with Felbatol

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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...
Friday, June 23, 2006

New neurologist

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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...
Wednesday, June 14, 2006

Happy 4th birthday!

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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...
Saturday, June 10, 2006

Therapy

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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 ...
Thursday, June 08, 2006

2 year anniversary

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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 ...
Friday, June 02, 2006

100mg Lamictal

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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...
Tuesday, May 09, 2006

125mg

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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. ...
Monday, April 17, 2006

more/less Lamictal?

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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...
Tuesday, April 04, 2006

1 year VNS anniversary

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As expected, the extreme hyperactivity that we saw after the last med increase subsided pretty quickly. And, right on schedule, the number o...
Tuesday, March 21, 2006

Increase in Lamictal

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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...
Friday, March 10, 2006

Last visit with neurologist

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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...
Thursday, March 09, 2006

Jumpy

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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...
Sunday, March 05, 2006

Rash, oh no!

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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...
Sunday, February 26, 2006

John's neurologist is retiring

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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...
Saturday, February 18, 2006

Tough couple of weeks but better again

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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...
Tuesday, January 31, 2006

EEG

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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...
Wednesday, January 25, 2006

More of the same

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I haven't posted in awhile, mainly because nothing has really changed. John is still taking 150mg of Lamictal per day, and is continuin...
Thursday, January 05, 2006

neurologist visit

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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...
Wednesday, December 28, 2005

Sickness, Christmas

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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...
Friday, December 16, 2005

Increase in Lamictal

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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...
Friday, December 02, 2005

Still doing pretty well

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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...
Wednesday, November 23, 2005

Up and Down

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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...
Sunday, November 13, 2005

getting better again

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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...
Wednesday, November 02, 2005

More Lamictal, Halloween, pre-school

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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 ...
Thursday, October 27, 2005

Still at 100mg Lamictal

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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...
Tuesday, October 18, 2005

No change yet with Lamictal, CURE

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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...
1 comment:
Wednesday, October 12, 2005

Lamictal not helping

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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 ...
Wednesday, September 28, 2005

More Lamictal

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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...
Friday, September 16, 2005

VNS upped again

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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...
Tuesday, September 13, 2005

no change

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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 ...
Tuesday, September 06, 2005

back to 75mg Lamictal

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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...
Friday, August 26, 2005

A small setback

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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...
Monday, August 15, 2005

Starting the Lamictal wean

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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...
Thursday, July 28, 2005

Still seizure free

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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...
Tuesday, July 19, 2005

4 weeks seizure free

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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 ...
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