Melanie had another seizure last Friday. She is not sick, so I'm not sure what the trigger was. Perhaps it was the excitement of Daddy pulling into the driveway. She and James were outside playing: she was not too hot or cold and she had her sunglasses on. In fact, she had asked if she could go outside and I said, "Yeah, hold on," while I was bustling around the house. Before I knew it, she had her shoes and glasses on and had let herself out. My big girl! I stayed inside to do some things, keeping a close ear out. Thankfully, Melanie talks and exclaims constantly while she plays so I don't really have to have an eye on her at all times. At some point, I heard Nick pull in, but I did not hear the usual, "Oh! Hi Daddy!! Daddy, you home! Aw, hi Daddy!" Just silence. Then, "James, go get mommy." He found her sitting on a trike, looking upward.
I tried some potent essential oil under her nose, as many parents report that can wake up their kid's brain from a partial seizure. But at minute 2 or 3 we saw it move into her hand, so I sprayed the rescue med. The last minute of this one looked odd and frightening. Nick grabbed the phone and turned it on, but I told him to wait. Then it ended. I believe she is spared the memory of anything unpleasant.
James always tells her to say something, and "Melanie, why aren't you talking?" during a seizure. Well, it took a while for her to come-to. Still not sure if that unresponsive sleepy state is non-convulsive status epilepticus, or if it's just her post-ictal brain-recovery state. I need some better answers from our neurologist. (Or any seizure parents reading this with some insight?)
Good news is that she recovered pretty well from this one. She looked more "seizurey" for about 3 days afterward and her endurance was definitely diminished, but we haven't seen the intense behaviors and refusal to listen too much this time. All of those after-effects tend to linger for a couple weeks, until her light clicks back on suddenly and we see our sparkley little Rose.
In the last roughly three months, our online Dravet community has mourned the intense struggle and loss of three young children who suffered "that one seizure" which landed them in the PICU in a coma, as their organs shut down one by one. Today it was a family across the world, but a wound close to home.
