Worse than ever

The seizures are worse than ever. During a seizure last night, I almost called 9-1-1. Thank God that we have a rescue medication - Midazolam - which we can administer nasally. This means that it is fast-acting. Ben was having trouble breathing, and it was so hard to watch. The Midazolam worked within minutes, though, and returned his breathing to normal, and sedated him so that he didn't have to experience the unpleasantness of the seizure. When he is coming back to consciousness from such a seizure, Ben often frowns and whimpers. Inhumanely, the seizure continues even when Ben reaches consciousness, and that last part is particularly excruciating for me to witness because Ben is in distress. I can't tell if it's because he's scared, or whether it's because he has a headache, or what. He frowns and whimpers and looks me straight in the eye.

Last night, I said to my sister, I don't know how this can go on. But even as the words left my mouth, I knew that it could. Epilepsy is a monster with no enemy. It can go on and often does. I realized, as I uttered those words, that it would go on. That our lives might be run by this monster for a long time. Maybe for Ben's lifetime. Hopefully that means at least my lifetime. We will find a way to manage living life with joy despite this monster. We will conquer it.

Then today, Ben was uncharacteristically fussy. Crying and wanting to be held all day. This is not like him at all. He is usually very comfortable wherever he is. He was listless and not alert. It was alarming. I took him to his pediatrician. She was alarmed but could not help us. He has no fever. He's acting like a baby who has a high fever - listless, fussy, sleepy but unable to sleep peacefully. Yet no fever. His neurologist had no answers either. What do I do? How do I help him? My gut tells me it's some kind of irregular brain activity causing him this uncomfortableness. I have no idea how to stop that for him. The only viable option is to sedate him but I'm not willing to do that. He's been sedated for too long during crucial developmental periods already. So, we will see how it unfolds tonight. Aaron and I have not slept in 3 days. Since the seizures started again. Please let us all sleep tonight.