John Kenta

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...
Thursday, February 21, 2008

EEG and VNS

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We went in for John's EEG last week, but there was some mix-up and we were finally sent home and forced to reschedule. We got reschedule...
Wednesday, February 06, 2008

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Not a lot has changed seizure-wise since my last post. John continues to have at least 1 cluster of seizures every day. Each cluster has bet...
Friday, December 28, 2007

Christmas

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Yoshie and Maya are in Japan this week, so John and I have been having fun playing with our Christmas toys. We even got a little snow on Chr...
Wednesday, December 19, 2007

seizures return

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John has started having seizures pretty much every day now. They are still really small, but come in clusters again. We can only assume that...
Monday, November 05, 2007

doctors comments

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Our neurologist got back to me on a Friday evening, just an hour after I e-mailed him. Wow. He said the high felbatol level was not worrisom...
Friday, November 02, 2007

EEG results

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His EEG showed some interesting things. It's still very abnormal, which is no surprise. But, it looks like he has more discharges while ...

Blood results

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I just got John's blood test results: White cell count, hemoglobin, hematocrit, MCV, RDW, Platelet Count, Iron levels, and Lead levels w...
Thursday, November 01, 2007

EEG

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John had another EEG this morning. As always, it was pretty traumatic for him to have to lay there while the leads were glued on. It gets ha...
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Halloween

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We went to Eric and Amy's for Halloween again this year. Maya had a good time trick-or-treating (after recovering from her fall). But Jo...
Monday, October 29, 2007

VNS is almost dead

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John had a neurologist appt. on Thursday. We had his VNS checked and it is almost dead. He said that it likely isn't even giving the ful...
Wednesday, October 03, 2007

John Climbing

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I haven't updated in awhile. This time no news is good news. It's now been over 4 months since we've seen a seizure. It's ki...
Wednesday, September 05, 2007

1st day of kindergarten

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John had his first day of kindergarten yesterday. He was crying when we left in the morning... , but was smiling when he got off the bus in...
Friday, August 31, 2007

100 days!

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It's hard to believe, but we haven't seen a seizure for 100 days! And, John starts kindergarten on Tuesday. He'll be in class fr...
Monday, August 06, 2007

75 days

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The big news is that John has now gone 75 days without a noticeable seizure. Woohoo ! Because of his success, we haven't changed anythin...
Sunday, July 01, 2007

John Climbing

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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...
Friday, June 15, 2007

Happy 5th Birthday!

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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 ...
Wednesday, June 06, 2007

Keppra + kindergarten

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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...
Wednesday, May 16, 2007

IEP

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

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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...
Thursday, May 10, 2007

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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 ...

Felbatol, herbs

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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...

A lot going on

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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...
Tuesday, April 03, 2007

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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...
Friday, March 23, 2007

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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...
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