Sorry for the title of this post. I could not come up with anything jazzier to talk about seizures. Yes, last week was probably the hardest week we have had to date but more on that later.
Brayden has been experiencing a long series of seizures since Sunday (outside of his normal daily seizures). Despite our best efforts at home, with a few doses of Diastat and then at the local hospital, his seizures proved to be stubborn this time. He was transported from our local hospital to Children's in DC.
I spoke directly to Brayden's neurologist at Children's. She shared that she was not surprised he was having trouble because Brayden did so well on the ketogenic diet, weaning him off was certainly going to cause problems. Brayden is being admitted to the hospital for the prolonged seizures over the past few days. The neurologist wants him in the hospital for observation and, as she said, aggressive medication changes that cannot be done at home.
Brayden and I are camped out in the neurology wing, hopefully for not too long.
Funny thing is, I was typing a blog post last night about his seizures, it is below.
The week preceding the past week at the hospital was hectic. We decreased the ratio on the ketogenic diet. This adjustment was the first time we saw significant change in seizures. Brayden was having several, disturbing seizures that week, in addition to his "normal" daily seizures. Two back-to-back seizures happened at school. The school nurse wanted to call 911 but I was close by and came to pick up Brayden (and his home care nurse who was at school with him).
In fact, the morning we rushed Brayden to the hospital because of his feeding tube, Jeremy thought I called to say we were heading to the hospital for seizures.
Brayden then had a couple of those disturbing seizures at the hospital. These new seizures are difficult to see at first. We have a hard time convincing those around, that do not know him, that Brayden is seizing. His body looks to be moving normally but watch him closely it is not voluntary movement. His eyes are open but seem unresponsive. Pinch his cheeks, move his head (which annoys him) and not much response. We move him and he remains stuck.
Please pray for us. We have not recovered much from last week. Carter and Luke are already upset about not going to Myrtle Beach and now other activities that we planned for the week are not going to happen. We are feeling weary. Brayden seems to be feeling good...perhaps all of the heavy medication!?