Daytime seizures are back

John has been suffering a lot of night seizures, but hasn't had any daytime seizures for quite some time.  Of course that all changed on one of the very rare evenings that Yoshie, Maya, and I got out without John.   We got the call just after ordering our food.  It's almost comical.  But, we have a great caregiver that was watching John and she handled it all just fine so we were able to enjoy our time out.

John is big enough now that we cannot carry him to bed when he has a seizure.  So, he got a nice long nap on the kitchen floor.

We ARE very slowly decreasing his ONFI.  This is a benzodiazapene and withdrawal seizures are pretty common.  We're hopeful that is all it was and it doesn't happen again.  We really don't want to have to add that drug back in.

Another VNS adjustment

John has really been struggling with big nighttime seizures lately so we decided to get his VNS adjusted again.  It has been at a pretty low setting since he had the battery replaced back in January.  We still have a lot of room to adjust before adding a new drug in to the mix.
So, his new settings are:
1.5mA output current, on for 30 seconds and off for 1.8 minutes.   If we swipe the magnet it goes for 60 seconds at 1.75mA.
It often takes a few weeks after an adjustment before we see any change.
We also got the OK to start going down on his Onfi.   We really don't think it's doing anything and it is one of those drugs (a benzodiazapene) that you really don't want to be on long-term.   Weening these benzos often mean withdrawal seizures but I think it's worth it in the long run.   We're also hopeful that we can find the right strain of cannabis to help John.  That is proving to be quite difficult in Oregon.
The doctor said they are getting 30 calls a day from parents wanting to try cannabis.  But, the doctors don't know anything about it.   This grey area of legality is really ridiculous and means parents have to learn about strains, dosing, etc. from other parents instead of doctors.   Hopefully it will get better soon.

broken chairs

Last week it was all about chair arrangement.  This week he has moved on to chair destruction:

We really don't have much furniture left.  And, it wouldn't make sense to buy anything new.   We might have to resort to folding chairs or similar in the near future.

John the artist

John's new "thing" is taking all of our dining room chairs and arranging them in some unique way.  I have no idea what he is thinking with this.  But, he gets super focused on it.

Some examples (in the 2nd one he is posing in front of his work):