As you may or may not know, Daniel spent this past week (Tuesday, Wednesday, and Thursday) at Children’s Hospital in Dallas to do an extended EEG to help us understand his epilepsy better. By the end of it, we added in a new medication – Depakene (which is Depakote, but in a liquid form) – and have him signed up for an Occupational Therapy study and also for the ketogenic diet.
This last part – the ketogenic diet – will require another week-or-so stay in the hospital while they recalibrate his body to burn fat for his brain-food instead of sugar or carbohydrates. It’s a little touch-and-go at first, and he’s going to be bloody miserable for that week, but it should give us an enormous amount of seizure control. We’re going in for an MRI on the 6th of December (which I’m trying to be okay with, since they have to knock him out for that), and hopefully we can just admit to the hospital right after that and start the ketogenic process.
As it stands, the new medicine keeps his seizures from being terrible – he’s not going tonic-clonic or apnic, which is good – but he’s having seizures hourly, almost like clockwork. He only had one that was outside of the “schedule” of the day, and that was at half-past instead of at the top of the hour.
I did have an interesting discussion with the night resident on Wednesday, I think it was. He identified Daniel as autistic immediately and said that we would probably be able to tell very easily the difference between the autism and the epilepsy. I, of course, am endlessly curious and want to know if we’d be able to discern the difference on the EEGs.
He gets a helmet next week, which should help with the head injuries (and gods know he has a lot of those) and perhaps help him look less like a third-rate boxer (the sport-ish kind, not the dog-ish kind). It’s just so frustrating having to jump through all of these hoops to help him have a moderately normal and happy life, but at the same time, what level of effort will ever be too much?