John's cycle of having a bad day followed by a handful of good days has continued.
All last week John had a new game where I would hold him by his feet and he would swing back and forth under my legs. He got to the point where he wanted to do it all the time. And, he got quite good at throwing his weight around so he did all of the "swinging" himself. He looked like a little gymnast. Last Thursday, I noticed that he quit moving while doing this, and sure enough he had gone into a long seizure while upside down. I can't help but to think that I contributed to this one. It was 5 days after his last one, so I guess we should of expected it, but still it hits us hard every time. Since it was clear that he is not going seizure free with his current medicine, we decided to increase his dose the same day. So, he's been at 3.5/2/3.5ml of Felbatol since then.
We had 4 good days after that, including another seizure-free day. On the 5th day, he had another long one in the morning, right on schedule. This one was almost 2 minutes, so probably the worst one to date. He had another 75 second seizure in the evening. So, it appeared that the increased Felbatol was only making him worse. However, we haven't seen a single seizure of any kind since then which would make this his longest seizure-free stretch in a long time. We're expecting the next one on Sunday, and we'll adjust meds depending on how that goes. We can go one step higher before giving up.
The increased drug has affected his sleeping. He's been a bad sleeper since starting Felbatol, or maybe even before that. But, it has gotten worse. We're crossing our fingers that this will get better with time.
We finally had a session with a new speech therapist yesterday, and will be going there once a week for awhile. Yoshie still does daily therapy sessions too. But, he still needs more speech therapy, so we're investigating other options as well.