Bertrand's neurologist has been very supportive and quick to respond in regards to Bertrand's tonic seizures. Given that today is a holiday, she is not at work, and we are seeing her later this month on January 21st, her concern is even more meaningful to us.
Because he is on the 250mg sugar free keppra tablets and tablets are harder to titrate, we have to go up by 125mg each dose. That would be 375mg twice a day which is around 60mg/kg/day. That's a fairly high dose of keppra which will hopefully help, but we'll be in contact with Bertrand's neurologist should any problems arise, such as sleepiness or other toxicity symptoms.
(Just in case, I will be heading over to Jolley's Compounding Pharmacy as soon as it opens, to get a special sugar free version of liquid keppra made for Bertrand. This would make his Keppra dose easier to titrate.)
Bertrand's myoclonic jerks and atonic episodes are still down around 0 to 4 each, everyday, which I feel is still an improvement from the 100 some each daily he'd have back in October. I don't have to worry about him falling as much and he can play with hard toys now, instead of only soft ones in case of a head butt.
His myoclonics, atonics and now the tonic seizures only happen in the early morning (before, during, or just after breakfast) or early evening (just before bed when he is tired). For most of the day, Bertrand is lovely. :)
Given this morning and evening pattern, however, we're back to discussing an evening ratio shift with his keto team, to see if that will alleviate some of the early morning seizures.
Just keep telling yourself that this is a balancing act right now, and you are doing the right thing in trying to find the right balance of meds/diet. B and you have accomplished so much in getting him to a much more stable place!
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