John had 48 seizure clusters 2 times this week, which ties his worst days ever. This was also easily his worst week ever in terms of seizure clusters. The VNS is not yet working. In fact, 3 times today he had a seizure immediately after I used the magnet. I'm getting worried that the VNS is actually making him worse. That is almost unheard of, but can happen.
We increased his Lamictal to 40mg/day. This also appears to either make things worse, or not do anything at all. He's still not officially at a therapeutic dose, but I think we would probably see some sign of improvement if this was to be his miracle drug. Since we don't have too many options, we'll continue to increase this weekly unless things really get out of hand.
John is completely off the keto diet. It's been really nice to not have to use the scale or prepare all his meals ahead of time. We're still keeping him away from heavy carb foods just to give him time to adjust. I took his ketone reading this week and it was 0. So, his brain is officially running on glucose again. We'd be happier about this if he were doing better. As it stands, it looks very likely that we'll have to put him back on the diet soon. At least he is able to enjoy meal time again. I hope this doesn't backfire. He may not ever go back to happily eating heavy cream and oil for his meals again.
The news is not all bad. John seems especially happy these days. The diet, the VNS, or the Lamictal has made a noticable change in his demeanor. I think his increased seizure activity is probably a direct result of him being in a good mood and running around all over the place. We're holding on to this slim hope that the VNS or the drug has helped his background activity, and it will help his clinical seizures at a higher dose.
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