Since there is no cure for cerebral palsy, we treat the symptoms as they arise. Sometimes we mask the symptoms we don't know are there because we are already on medication. And sometimes, we stick with one path of medication.
In January we tried botox again. We have stuck with Phenol for so long that I was worried about trying something new. Our doc in Utah wanted some botox on board and so we did it. But we went all out. We did the serial casting. We added an extra week on those. He did great. We had some behavior issues at school starting about this time. We did the botox, we did the cast, we knew that once we started on this route we would be putting him under every 90 days. OK, 91 days. So, on day 91 we went back in for round #2. We needed some blood taken and needed a lot. We are having some major endocrine problems and we needed a more accurate med level of his seizure meds he is on.
Dr. Bernes (our Neurologist) And Dr. Shafron, (our Neurosurgeon) worked together to get the blood work we needed. Tyler hasn't really grown in about 2 years. His weight hasn't moved for 2 years. He still fits in clothes he wore when he was 5. He just doesn't grow. With the seizures he shows, we need more medication but we can't, because he hasn't grown. It put Dr. Bernes in a small amount of a panic.
So while Tyler was asleep the procedure went great and they listened and didn't give him versed. The sleep doc gave him something so that as he woke up he would lessen the chance for a seizure and I took him home. This was really routine, so it was something I could easily do on my own.
Grayson was at his friends house but after I got Tyler, he was much more drowsy than he usually is. And we were training a new respite/hab workr, so we were just trying to get as much done in a night as we could. As Tyler and Grayson were playing their hearts out and all of a sudden Tyler stops dead in his tracks and his respite worker was 2 steps away. He went limp and we realized he was having a seizure. He wasn't responsive, he was weak and he was just gone. My heart sank. I made Dallas try to get the rescue meds in his mouth. But by the time we got them in, he was coming out of it. H didn't throw up, he peed his pants but everything was just so different than what we have seen before. It was horrifying to see a seizure start and stop.
Shortly after he stopped, he crashed. He feel asleep immediately and in a deep, fast sleep. I carried him up the stairs ( and this is another reason I want a one story in August!) and dressed him for bed and put him in my bed.
I slept across the bottom of the bed to keep him safe, only to realize that whatever happens in that brain, I can't save him from it. As sobbing and sadness and extreme guilt set in, I realized that this is our life. I have no control over what happens.
Sleep was few that night but the next day resulted in the adverse reaction team calling and us being put on the naughty list. We will probably not be able to do this next round of botox but will have to do something else. Our only option is in Utah right now. But right now, we are trying to sort through the behaviors and figure out what is behavior and what is seizures.