Question from a parent

My daughter, nine months old, has a severe epileptic condition caused by a genetic mutation. She is home on palliative care/comfort measures and has a DNR due to it being a terminal condition and we don’t want her to spend her whole life in the hospital. She has spent time on life support and we never will put her through that ever again.

She will often sieze many hours out of the day.

My question to you is, how aware are you during your seizures? And do they ever hurt? I try to hold her during seizures, but if she’s having a long seizure day, I sometimes have to put her down somewhere safe in order to take care of myself and my family. Her longest seizure day was 16 hours straight status epilepticus. And yes, that was with all the rescue medication’s, daily medication’s that we could give her.

I’m asking because sometimes I feel bad when I have to put her down in her bed on oxygen like I’m a bad parent or like maybe she thinks she’s just being abandoned in her hardest moments , but I also need to find time to eat or drink or take a shower. I can’t just sit and hold her all day. Are you aware if you are alone during a seizure for a brief amount of time?