Wednesday, April 23, 2008
Today was another good day for Reagan, which is good because she was really testing my patience yesterday! She is really chatting it up again tonight! (We're going to have to get it on video, it's so cute!) I did find out the results of the blood test today and her counts are where they should be, so we're free to go out again! The immune suppressing effects of the ACTH are finally gone. They also said that the liver panel and other things they check for the Felbatol look good. So we are going to increase the Felbatol again tomorrow. Not as drastic an increase as the last time when we doubled the dose. She'll go from 1ml 3x a day (360mg/day) to 1.5ml am, 1ml noon, and 1.5ml pm (480mg/day), which is still (supposedly) considered a low dose. We'll see. We haven't necessarily noticed a significant decrease in the number of seizures, but we have definitely noticed a decrease in the intensity. She's not flying out of our arms anymore but she's having a lot more of the subtle spasms where just her shoulder or arm will twitch. Unfortunately, they still occur in a fairly significant manner, where she'll have a stronger crunch forward and then have several twitches that follow right after. She also seems more dazed afterwards than she used to. I really hope the ketogenic diet works. I'm so sick of these seizures and what they are doing to her.