Sunday, June 09, 2013
Okay, well I have good news and bad news. I'll start with the bad news first.
Hewitt was still having seizures. That will always be in the bad news category (duh). He is mostly having absence seizures. The Dr. said around 4:30am they started increasing until he was having very short ones every 10 seconds after waking up. They seemed to taper off after a while, but I was definitely bummed to hear they were coming every 10 seconds.
Good news. In his quick check through his EEG he didn't see any myoclonic seizures. These are the ones that make his arm jerk involuntarily that I thought I had seen an increase of. He did say he could see why, that he was making some jerky movements with his arms but he said they were NORMAL little boy spasticness. I loved hearing that and I probably wouldn't have believed him until he showed it to me on the EEG reading.
The Dr. spoke at length with me about how Hewitt is doing in school and behaviorally. This is probably my biggest concern right now. He's behind. I know he's intelligent, that's not my concern. It's just getting the information to stick in that sweet little head of his. Hopefully this summer I will be able to spend more concentrated time working with him. His Dr. had a lot of great ideas of ways we could help him and also suggested finding a child psychologist to help us with some of the behavior modifications.
This is probably one of the hardest things we are dealing with right now. It is really hard to watch him with other kids. He really struggles with boundaries and appropriateness and it just breaks my heart to watch him struggle through this. I know God will use it as part of his story - but it hurts my heart. And, sometimes it breaks his. So, we will continue to fight for him this way. ..trusting that there is a purpose for it all.
Our next move is to remove the Keppra from his med routine. Just typing that makes me feel all fluttery and nervous. Hayden and I have talked for years about whether or not this med is contributing to his behavioral issues. It's so hard to know what does and doesn't at this point. He's been on this med since the very beginning though...April of 2008. So, we will take the next 8-9 weeks and very slowly wean him off of that. This is what I would really appreciate prayer for more than anything. This could mean that we might be dealing with exaggerated side effects for the next 8-12 weeks as his body adjusts to not having it. I feel like this is a good move for him, but I'm still nervous about it. We have a medicine picked out to add if we need to add one. I'm hoping we can just stay on the one, but we will see. The Dr. said that they don't treat absence seizures very aggressively at this age. But, if he's still having them when it comes to driving age we will revisit that. So, part of me is excited for this change and the potential for his behavior to normalize but part of me is terrified that removing it will throw us back into hundreds of seizures a day again. Deep breaths - lots of deep breaths. We would covet your prayers for this transition. It has potential to be a very difficult one.
It feels good to have a plan in place and this appointment behind us. We have a busy ministry summer so I'm excited to let go of the school year and jump into summer!