Three more for the records
Yesterday L fell out of a chair at a restaurant and hit the back of his head and had a seizure.
Today he had two RAS episodes, but neither developed into a full seizure. One at the pool when he looked around and didn't see me (this seems to be his most frequent trigger these past few months) and one later at home because M crumpled up his puzzle. Both times with help he was able to take a breath before the point of no return, but they "count" nonetheless.
I don't know if it even does any good to record them like this. It's depressing. But sometimes I look back and see patterns, sometimes I notice things. We used to go several weeks between seizures, now it seems we have at least few every month. They come in clusters, two or three in a span of a few days, then a few weeks of reprieve.
At some point, hopefully, L will outgrow RAS. But even then not really, because those who are no longer said to have RAS can still have an average of one episode a year, or more. Some go years without a single event, only to have it come back again full strength as a pre-teen. I was talking about that with one of my coworkers earlier this year, how in a sense it will always be there in the back of my mind, and I actually don't like how the name isn't really used after children reach elementary school aged, since they do still have them.
She didn't get it and asked why I 'needed' the name. "If M wet the bed once a year, would you say he was a bed-wetter? No, you'd call it a fluke and think nothing of it. When L gets to the point of having one a year, you have to stop." Stop, what exactly? Stop caring that my kid has seizures? Not likely. Stop trying to do what I can to reduce the likelihood. Why? Can you imagine someone saying something like that to a parent of a child with epilepsy? "Why do you feel the need to call your child epileptic? He only has one seizure a year. You need to stop this whole epilepsy thing." Maybe RAS just needs more awareness.