Felbatol has turned out to be a real nightmare. We are trying to get rid of it, but with all seizure medications, you cannot just quit taking the drug. We were told that the absolute fastest we can get rid of it is a 200mg reduction every 3 days. We intend to follow this.
John goes through periods now where he will have a seizure cluster every 5-10 minutes. His 4 worst days ever (by # of clusters) have come in the last 5 days. Now we are just really hoping that he will get better as he comes off of the drug. So far, he seems to be getting worse, if anything. He's had 29 clusters each of the last 2 days, and today looks like it could be far worse than that.
As for the diet, he's down to a 2.5:1 ratio. We went down further because his ketones are still sky high (5+) and his glucose is super low (58). He's in a deeper ketosis now than he ever was at a 4:1 ratio. It's obviously not doing anything for him. It's possible it's making him worse, though, and that is why we lowered the ratio. There is no explanation as to why his ketones remain so high. I suspect it is some undocumented side-effect of the Felbatol.
John also threw up again yesterday. He's vomited more in the last week than the rest of his life combined.
