John Kenta

At what point do we quit referring to this as our house and start calling it our gym?

We continue to increase John's VNS settings.  He is up to 1.25 output current, with the magnet set to 1.5.  It is on for 30 seconds and ...

We're still hoping the VNS will help with these night seizures, and we have 2 more appointments to adjust his VNS settings.   But, in th...

Yoshie took some video of one of John's night time seizures this morning.  These are the typical ones that he has 3-4 times a night now:...

The daytime seizures have mostly stayed away which has been really nice.  Unfortunately the bigger night time seizures have continued so we ...

We went to the surgery follow-up appointment yesterday and the incision is healing nicely so he got the OK to submerge it in water again.  T...

John had his VNS replaced again on Jan. 3.   Over the last several months John's seizures had gotten progressively worse so we made an a...

Today, John's behavior therapist came over.  We haven't seen her for awhile, so we had a lot to share.  She gave us some techniques ...

We went back to the developmental pediatrician today, this time with John.  She wanted to do an exam, but of course he wouldn't allow th...

John's seizures have gotten somewhat worse lately.  Today he had a big seizure in the morning and he had to sleep it off all morning so ...

Just another day dealing with the "new" John.   We took him to a park to play for 30 minutes while we were waiting to pick up Maya...

Well, John did wet the bed today.  But, this is the first time in over a week!  So, simply moving his seizure med from night to morning made...

John had 2 more big seizures on the 18th and 19th.   We don't know if this is because of his new med and it's known side-effect of l...

Maya and I left for a hike today.  John ended up having a big seizure in the morning, with no breathing and just his right arm shaking viole...

Today started with John's appointment with his primary care physician.  She came in early just to see John which was nice.  John was cra...

Today, we had an appt. with the sleep study center.  John's neurologist referred us here due to John's issues with bed-wetting and w...

I obviously haven't been very good about keeping the blog updated.  But, things are changing again so I will make an effort to keep this...

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...

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...

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...

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...

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...

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 ...

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...

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...

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 ...

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

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 ...

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...

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...

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-...

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...

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...

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...

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, ...

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)...

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...

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...

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...

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...

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...

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...

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 ...

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

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...

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...

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...

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 ...

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'...

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...

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...

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...

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...

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...

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...

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. ...

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...

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...

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...

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...