John Kenta

Wednesday, August 10, 2011

Playground fall

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John went to a special needs camp all last week. We were pretty nervous about sending him, but he seemed to really like it. That is, unti...
Sunday, July 31, 2011

Japan trip

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The trip to Tokyo went well. I think John had a great time. The flights were tough, but only because he was happy and making a lot of no...
Friday, June 17, 2011

Big week

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John turned 9 earlier this week. We just had a family party, but he had a great time opening presents, eating cake, and jumping in the infla...
Thursday, March 10, 2011

Update

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The increase in the zonisamide didn't help at all. In fact, his seizures have gotten somewhat worse lately. He's having a lot of s...
Friday, February 04, 2011

Dentist Bill

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Who would have expected that getting a tooth pulled would cost over $8500? That is just ridiculous. Our copay is about $1700. Kind of st...
1 comment:
Sunday, December 12, 2010

Extra tooth

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John had an extra baby tooth right in the front his mouth. We have known about it for a long time, and desperately tried to get someone to ...
Friday, November 26, 2010

some pictures

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Now that it is almost winter, I thought I'd put up some pics from the summer. John riding his scooter. Don't know how he got out w...
Wednesday, September 08, 2010

Back to school

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John started 3rd grade yesterday. He seemed happy to go back. We had a good summer. I'll post some pictures soon of some of our adven...
Friday, July 02, 2010

Toy Story

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Some parents organized a special showing of Toy Story 3 for special needs kids at our local theater. John has never been to a movie, so I ...
Tuesday, June 22, 2010

Father's Day

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I thought I would post some pictures from our father's day get together at Lucky Lab. John and Grandpa: John, Dad, and Maya:
Wednesday, June 16, 2010

Another EEG fiasco

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We took John in for another routine EEG. The last time we did this, he screamed for a long time and we had to forcefully hold him down so ...
Sunday, June 13, 2010

Happy Birthday!

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John celebrated his 8th birthday on Sunday. We had the family over for a party and he had a great time. He now understands that the prese...
Saturday, May 15, 2010

Dr. Visit

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We had another appointment with the neurologist. John is pretty stable these days so we decided not to change anything for now. We did g...
Tuesday, May 11, 2010

more zonegran

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Since John continued to have the small seizures, we slowly ramped up the Zonisamide to 150mg a day. Soon after that, he started having 30-...
1 comment:
Monday, March 29, 2010

Zonegran

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So, the Zonegran seems to be working. He's still having small seizures, but it seems like his mind has cleared somewhat. He is repea...
Tuesday, February 09, 2010

Dentist

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John finally got to the dentist for the first time. We found out that OHSU has a dentist for developmentally disabled kids so of course we...

drug swap

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The Klonopin didn't work out well at all. Not only did he become much more irritable , but seizures got much worse as well. His seiz...
Tuesday, January 12, 2010

Klonopin

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We ended up taking John off the Banzel and leaving him drug free for a couple of weeks. It's nice to see how he is without any drugs, ...
Wednesday, December 16, 2009

another new med on the horizon

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We've had John down to 200mg (1 pill) of Banzel in the mornings and evenings without any change, so we (along with our doctor of course)...
Wednesday, October 14, 2009

up and down

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John went through a pretty rough patch last month. But, as is often the case, his best days come after the rough patches. He's doing...
Monday, September 07, 2009

Lowering Banzel

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It's been 5 weeks since John has been off of the Keppra and on 1000mg of Banzel daily. Unfortunately, his seizures have gotten progress...
Thursday, August 06, 2009

Done with Keppra

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Keppra was a good drug for John. It stopped his daily tonic-clonic seizures the first day we gave it to him. But, we also suspected all al...
2 comments:
Thursday, June 25, 2009

Disneyland

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We had a great trip to Disneyland last week. John did fine on the 1000 mile drive, and was pretty good in the parks for the most part. Of co...
Wednesday, May 27, 2009

Banzel

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We've now increased the Banzel to 1 full pill, twice a day. We've also lowered his Keppra by 1ml in the morning. He's now tak...
Wednesday, May 20, 2009

Another new drug

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Well, that ADHD med also caused a rash on the 4th or 5th day. I guess John has an allergy to stimulants. We weren't really happy with...
Wednesday, April 29, 2009

Try Again

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The Metadate didn't work out. John developed a rash soon after taking it every morning. The rash didn't last long, but the doctor ...
Thursday, March 26, 2009

New drug

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We saw the developmental pediatrician yesterday, and she prescribed Metadate CD for John's hyperactivity. This drug is the same as Rital...
Monday, March 02, 2009

cut

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It's been two days since John got cut, so we had to change the bandage tonight. It took both of us to hold him down, but we got it done...
Sunday, March 01, 2009

More excitement

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John has been doing pretty well lately.  We have seen some very small seizures come back.  These are just a split-second tightening and a sl...
Sunday, February 08, 2009

No seizures

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That last increase in the Keppra did the trick. We haven't seen a seizure since Christmas. He's still on only 2ml twice a day, s...
Tuesday, December 23, 2008

Keppra increase

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Since my last post, we have increased his Keppra to 2.0 ml, twice a day. He went through a tough time with bigger seizures so we had to do ...
Thursday, October 02, 2008

Dr. Visit

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We had an appt. with John's neurologist on Monday. We got his VNS turned up to 1.5mA, on for 30 seconds, off for 3 minutes. We'...
Wednesday, September 24, 2008

Cycling

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I finally got up the nerve to try riding with John. Of course he loves it, and wants to go every day. I still worry about him having a sei...

First day of school

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I'm a little late posting about John's school, but here he is on his first day of first grade. This was also Maya's first day of...

Done with Felbatol

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On Aug. 27, we gave John his last dose of Felbatol. So, it's been almost a month now, and we didn't really see much change. He sti...
Friday, August 22, 2008

Felbatol reduction

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John's myoclonic seizures have been getting slightly worse all summer long. He's still doing great, but we felt it was time to sho...
Tuesday, August 19, 2008

Summer trips

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Here's some pictures from our road trips last week: Trillium Lake Trillium Lake John has been a good car traveler lately. This is actual...
Friday, August 01, 2008

Summer 2008

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I haven't posted in awhile. As usual, that means things are pretty much unchanged from my last post. John continues to have several c...
Tuesday, June 10, 2008

lots going on

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It's been a while since I've posted, and quite a bit has happened in the last month. We have continued to lower the Felbatol level. ...
Monday, May 05, 2008

Felbatol level

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At our last doctor visit, we had a chance to see the EEG and how it correlated to John's seizures. John is definately still having seizu...
Monday, March 10, 2008

Climbing

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On Saturday, our friend Rick offered to take us to the Portland Rock Gym. He knows how to do the belaying, so John and Michael (his son) go...

VNS

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Here's a picture of John with his new VNS. You can see that it is significantly smaller than the previous one. I think the stitches i...
Wednesday, February 27, 2008

EEG and VNS surgery

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Everything went as planned. We are back home and John is doing fine. We arrived at the hospital at 7:30 Monday morning. No mix-ups this time...
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