Just the guys

Maya has been in Japan for awhile and Yoshie went for the past few weeks.  So, it's been just John and I for a bit.
John went to Imagine Possibilities every weekday and Yoshie arranged for caregivers to watch him before I got home from work.  We did pretty well.   We took a lot of drives and had our share of fast food and Skyline burger milkshakes!

He did manage to put two holes in our plastic walls.  One of them was from slamming the door:

and the other one was from pushing our old huge TV off of the cabinet:

Here is John wearing something Maya brought back from Tokyo:

VNS Adjustment

In addition to the last VNS adjustment (to rapid cycling) we also increased his Zonisamide dosage.  Neither of these things helped at all so we decided to go back to a slower cycling of the VNS just to save the battery.
So, we got it set back to only going off every 3 minutes, but we had it set higher (2mA).   The VNS remains really the only thing that we sometimes see an improvement with so we are hopeful.   I'm pretty sure we'll never knock out his seizures completely but it would help all of us if he could sleep a little better.
We have another appointment in a month where we are going to discuss bringing him in for a hospital stay to try a few other things and probably get another EEG.
We also learned that John is at the top of the list for a medical trial of a cbd only cannabis pill. http://bit.ly/1gfI9zd

I have mixed feelings about that but we'd almost certainly try it if it truly becomes available.

Strattera

John has been really struggling with seizures at night.  He has seizures every night, usually when coming in and out of deep sleep.  But, for awhile there he was having seizures every 40 seconds or so for hours.  It was horrible.  We traded off staying with him but we were both getting exhausted.
We had his VNS adjusted to a rapid cycling but it didn't help.
In desperation, one night we gave him a pill containing a high-strain of medical marijuana that the dispensary had given me to try out.   I simply couldn't remember what he had said about the strength of this we figured it couldn't hurt at this point to give it to him.
Well, it wiped him out for awhile.  Until suddenly at 2am he is wide awake and giggling like crazy.  Oh man.  When he finally went back to sleep he had his normal run of seizures.  Then, he slept until 5pm the next day, completely missing school!  That was a mistake.
The doctors just don't know what to do and I think they are grasping at straws now, but we were prescribed Strattera, which is an ADHD medicine.  The hope was that it would calm him enough before sleep so he wouldn't have so many seizures.  But, we just couldn't bring ourselves to giving him another mind-altering drug, especially when one of the common side-effects is increased seizures.   So, we got the bottle but have yet to give him any.