Wednesday, June 24, 2009
Sleep is still the same. Not a lot of it. And Reagan had the same bad attitude this morning that she sported all day long on Monday. Luckily today it was only a half a day of it...although it was the half of the day when she was supposed to have two therapies. I say supposed to because she didn't do much except for scream and cry though her OT session this morning. More tummy pains. She finished the therapy session with a stinky diaper and then eventually cried herself to sleep. She woke feeling better but still cranky. She suffered through PT at noon but it wasn't her best work. I found a video today of one of Reagan's previous sessions with her other OT and I was SO impressed at how well she was holding her head up and bearing weight on her arms (while on her tummy and talking up a storm)...it really made me think. How she's not doing that at all right now. And I think it's the Keppra. It's amazing how these drugs, that are supposed to be helping our kids, often times do more harm than good. If it were helping reduce her seizures that would be one thing, but as we found out in Detroit she's still having boat loads of seizures! It's so frustrating that we're constantly changing medications (because nothing has ever worked) and with each medication change (up or down) it affects her...usually negatively. I just want something to work for this girl! I finally spoke with her neurologist today and filled him in on our trip (he's eager to see the actual results and talk to Chugani personally) and he's in agreement with taking Reagan off the Keppra and starting the Clobazam (whenever we get it). So tonight I started the Keppra wean, 1.25ml 3x day. Not nearly as aggressive a wean as I was hoping but for now I'll just go along with it. Who am I to say anything? I did ask him about a potential sleep aid but he wants to wait until we see how she responds to the Clobazam (it can make some kids sleepy). That would be a welcome side effect at night but not necessarily during the day. Lots of wait and see. Seizures have been rough again today so I'm glad we've come up with a game plan. Please keep our little one in your prayers.