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.
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