>> Wednesday, November 11, 2015
The title is misleading. Bug is not very aware, although he is doing a lot better with focus and engagement, I mean that I am too aware of epilepsy.
Last night was horrible. 7 seizures before 12:30am. At 11:20 we gave him a clonazepam to see if we could calm it down. He had had 4 by that time and another 3 in the hour it took the meds to kick in and then at 1:00am he slept peacefully. I know this because he slept next to me for the next 8 hours. HE got 5 hours with no seizures and then 4 more before he woke all the way up and got his morning meds.
The daytime seizures are so few now. If he has 3 during the day it's a bad day, he usually has 0-1, it's the nighttime crap that needs to stop.
I called to get him an appointment to see a new Neurologist here, in Chicago, and left a message. Until we get an appointment, Glenn and I have decided to give him the clonazepam nightly to try to get him some relief.
This is a difficult decision for me. It took us so long to wean him from that medication and now to have to put him back on it at night...I know that a lot of people with nocturnal seizures take clonazepam at night. I should be OK with it because it IS helping him sleep without seizing but I'm not. We have to do it, and I know this, I do, but damn it all...
This morning, he is happy. Chirping, spinning and engaging. I can say: Hey! And he will turn and look at me and smile when I smile. That's huge for him. HUGE. We have been so largely ignored for the majority of his life it's really great to be back in his world. OUR world. It's good.