Aidan had a seizure last night… it came out of the blue. It was a partial onset seizure, and stayed that way, which is not really typical of him. Usually the seizures generalize to full tonic/clonic and enough times to be frightening, he has gone into status epilepticus and stopped breathing.
This time, since I was holding him in my arms, I think I saw the “aura” descend on him. His eyes filled with fear and he started trembling. Then his eyes deviated sideways and he gagged a few times and stopped interacting. I called Kevin, who held him while I went for his seizure meds. Kevin and I always try to talk him through these. Once or twice it’s “worked” in that he’s stayed in partial onset and not gone to generalized. So we always try. Aidan’s eyes and body kept trying to slide into a sideways lock. We feel we’re fighting this enemy that tries to pull him to the side and capture him there.
I didn’t have to use the meds. After about two minutes he started responding again and relaxed, and got opportune enough to ask for a movie. He has figured out we let him watch a Pokemon video (his absolute favorite from hospital days) when he is sick. So he says, “I’m sick. Can I watch a movie?” Aidan, back to normal.
We stayed with him all evening. … Kevin had been making doughnuts in the kitchen and he continued, running upstairs to check on him every few minutes, while I sat with Aidan. Aidan watched Pokemon and giggled at his favorite parts, and all the kids came in turns to hover around him and pay court. He asked for his stroller wheel and the kids hunted the house and outside but couldn’t find it.
He can’t talk well enough to verbalize whether he remembers the event at all. He kept smacking his lips, which made me wonder if he still had some seizure activity going on, and once or twice he said “I have an owie.” But other than that, we saw nothing different. There was nothing different earlier in the day, either. In fact, if anything we would have said he had a great day… outside a lot in bright cool weather, playing happily.
This morning he seems a bit under the weather. EMed says it can take a couple of days for the effects to wear off completely. We will no doubt be in hyper-vigilance mode.
I know some people deal with everyday seizures and we get off easily in comparison. Aidan has his irregularly and infrequently. But they can be bad. It is like the monster that we can ignore most days, now, came and breathed on us — grey, cold breath. The breath passed off, but we still feel that chill. If it gets serious, it’s an ugly monster. It makes us feel vulnerable. If an everyday monster came to attack Aidan, we would fight to the death. This is not an everyday monster — it passes through all our barriers casually, not even paying attention to us. It shakes him like a rag and drops him and moves on. Kevin’s fatherly, fighting energy is turned to watchfulness and love; their close relationship is one of the good things that the monster can’t attack.