Harrison had another seizure this morning, so it looks like even with his most recent med zonisamide being added he’s still on his every 3-4 days seizure pattern. We almost discounted the last 2 seizures whilst we waited for the drug to take effect (5 days, apparently), but today’s event confirms our worst fears really. However, we could blame it on the clocks changing etc, but we know we’re kidding ourselves.
So we have about 2-3 weeks of food and medication left and we know we’ll need to reduce his phenobarbitone anyway due to his levels being too high at the moment. If his seizure frequency or severity increases a lot as a result of that then we know we have to act quickly, otherwise we just have to carry on as we are until we know the time is right. I don’t think it will be very long, unfortunately.
Feeling very sad and hopeless now, I wish there was something more we could do, but we have tried everything it seems and nothing is helping, so don’t want to run the risk of doing anything which is unfair or cruel, or just prolonging the inevitable any further.