Friday, October 9, 2009
Reagan did manage to sleep last night, maybe all the crying wore her out. She woke up at 6am feeling fine. Actually she was very calm and mellow all morning. We took her in for an appt with the Physical Medicine & Rehabilitation doctor, basically just to catch up and talk about the Botox scheduled for next week. We discussed Reagan's dystonia and spasticity, she clarified that Reagan has a combination of both. It's funny because we were talking about her extreme tone but while we were there she was extremely loose almost floppy. We had her look at Reagan's left leg and she thinks Reagan definitely strained something behind her knee. She was very sensitive to her messing with that area. She also said that Botox/casting may not be enough to fix Reagan's contractures in her ankles...and that we may have to consider surgery at some point. Lovely. She's also very skeptical that the removable casts her PT wants to use are going to work. We may have to give up the water therapy while she's being casted. I don't like the sound of that but I guess we'll just see how it goes. I did finally speak with her neurologist...he called first thing this morning. He said that Banzel has the tendency to get metabolized quickly by children and that their blood levels are often way lower than the actual dose. That being said, he wants to go a little higher. We're going to increase it to 1.25tab 2x day starting tonight (that's 500mg per day). He also wants to get her in for an EEG to check to see whether or not all of these twitches she's having are epileptic. She was having similar nonstop twitches over a year ago when she first started vigabatrin and an EEG determined they were not epileptic. I would like to get her in ASAP for this EEG but with next Monday being a holiday and the fact that I never heard from the scheduler today, it doesn't look good. I just don't want to keep her on this medication much longer because (so far) it's doing nothing whatsoever to help her. The problem is, we are really out of medications to try, at least those that are known to help her type of seizures. Reagan was a little excitable this afternoon...exactly opposite of this morning. Very high tone and on the edge...I just hope she's able to settle down and sleep tonight. I was hesistant to increase her pm dose of Bazel afraid that it might affect her sleep, but I did it anyway. Please keep her in your prayers.