Monday, October 26, 2009

Still droopy (increase Banzel)

Reagan finally slept last night. And boy did she sleep, I had to wake her up at 9:30 because she was still out like a light. She's still very droopy today. I don't know if all of this is related to the Botox taking a more systemic effect or if maybe she's just not feeling well. It's so hard to tell. I wish she could give us some kind of clue as to what's going on. I spoke to her PT this morning and she said not to worry about the casts. We'll figure it out. So the plan is that we'll take the removable ones with us to aquatic therapy tomorrow and have her look at them and possibly put them back on. Then on Thursday we'll probably be going with a permanent cast (for a week anyway). Reagan had feeding therapy and OT this afternoon. She was very floppy for both but at least she was cooperative. We had a little drama today. Reagan's vision therapist did not show. The last time I spoke with her she basically threatened me that if I didn't turn in Reagan's paperwork, she was going to stop coming. (The vision therapy goes through the school system so you have to turn in paperwork at a local school as if your child were attending.) Well, I've been waiting on a letter from her pediatrician that explains why she's not current on her vaccines (or even close). That letter just came in the mail Friday afternoon and I haven't had the time today to go by the school to turn it in. So we rush home from Reagan's other therapies only to find that apparently she's not coming. She needs to call and at least give us a heads up. Talk about irritating. I did finally hear back from Reagan's neurologist tonight. He went over her EEG very carefully and he thinks the majority of twitches we are seeing are just that...twitches. They are non-epileptic and therefore not seizures. He actually said that he saw very few seizures on her EEG and that it appears to be slightly improved over the last one she had there (over a year ago). Since we didn't get anything with her sleeping, he can't say whether or not the hypsarrhythmia has improved. I'm guessing not. I would sure love for her to outgrow Infantile Spasms but I don't think that has happened yet. He didn't mention the laughing (and I forgot to ask) but I'm guessing it was nothing or he would have brought it up. He's in agreement with increasing the Banzel a little more. She's already at a pretty high dose but we're going to increase her pm dose to 1.5pill so now she'll be at 550mg/day starting tonight. I would LOVE to see some improvement with this increase. Please keep her in your prayers.

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