For the past 4 months we've been experimenting with new drug options for little monkey's epilepsy. It's in response to a change in the fit pattern which ended up in a massive status epilepticus lasting more than 70 minutes.
The first drug we tried was a bit of a disaster, he had a huge allergic reaction and puffed up like a huge red balloon. Poor little man needed 3 days off school to get over that.
The second one hasn't been much better, although this time the side effects have been different. It changed his behaviour, and he started lashing out at people. His most common trick is to scratch you round the face and it often comes without warning, so quickly that there's nothing you can do to stop it.
So yesterday was 'last straw day' for this drug. The transport people ominously turned up on our doorstep to tell us that he'd scratched another parent round the face for no reason causing quite a big scene at pickup time. And he had another fit, the poor little man spent all morning crying and throwing up after another one of his weird early morning seizures.
We looked at the seizure log and it turns out that he's still having the same number of fits as before we started on this drug, but it's turned him into devil child. No contest really.
But it's scary because the next status epilepticus could be even more dangerous than the last, and when they happen at night we have no way of knowing and no way of administering emergency care.
Every time we try a drug it's a leap into the unknown. Every time we remove a drug the same. What will happen next and will we ever get control over these seizures? Nobody knows.
