Thursday, August 27, 2009
So I guess my girl is officially sick. She seemed well enough this morning, she had a good 8hrs of sleep last night and she woke up and had only one dirty diaper today. I fed her some of her bottle and was just holding her on my lap when I heard a weird noise. I leaned her over somehow anticipating what would come next. Throw up. She had a little incident while I was holding her in the living room, I jumped up and ran into the kitchen (all tile) and she proceeded to throw up all over the floor. She was covered, I was covered, it was a mess. Poor thing, it was even coming out of her nose! So then I was faced with the daunting task of getting all of her meds into her on a queasy stomach. She was having lots of seizures so I knew she really needed to keep this down. I mixed it in with the tiniest bite of baby food and somehow she managed to keep it all down. Let me tell you, I was a nervous wreck for an hour or so waiting for it all to digest. When they throw up their medicine it's a huge deal because you don't know how much of it they got and how much you need to give them again. I'm just glad I didn't have to deal with that. Of course, I did forget to give her her middle of the day dose of Clobazam. Oops. It just never occurred to me. After speaking with the pediatrician's office, we were only giving her pedialyte, so the last thing on my mind was trying to get more food in her. Oh well. She did seem to tolerate the pedialyte pretty well today, so I slowly introduced some formula tonight and she seemed to be OK (thankfully she only threw up that one time). Ugh. We do not have time for a stomach virus! Today she only had 3 dirty diapers but I think that was probably due to the fact that she didn't eat much real food. I did finally hear back from her neurologist tonight. He said that it's fine for us to start weaning the Clobazam...although I do want to keep her on some small dose of it because it is helping her to finally get some sleep at night. Next step Banzel. He's still slightly hesitant because he's never used it in kids Reagan's age, but he does think it's worth a try (considering we're about out of new options for her to try). Personally, I know of plenty of kids Reagan's age that have tried it. Of course, it hasn't worked for any of them, but Reagan is certainly unique in her response to meds so maybe it will work for her!?!? So that's the plan. We'll start Banzel (probably in the next week or so) as we wean her down on Clobazam. Next step Topomax...which probably isn't doing much for her but we haven't seen a true tonic or tonic-clonic since starting it. Problem is, you never really know what a medication is doing until you take it away. Please keep Reagan in your prayers...between stomach issues, seizures, and medication changes...she needs some extra prayers.