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.
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