Tuesday, August 25, 2009
Sleep was improved last night. Reagan woke up once but fell back asleep immediately when I laid her in bed with us. She's so precious...laying there fast asleep on my pillow. She woke up in a good mood today, which is amazing because she was having lots of seizures and had two dirty diapers immediately after waking. She actually had 4 dirty diapers total today. That's not normal for her. That's not normal for anyone! Did someone feed her some Mexican food without me knowing? Poor thing. Her tummy has been rumbling all day but it hasn't affected her mood. Somehow she's managed to be sweet all day. It's strange how she can have one dirty diaper that causes her hours and hours of pain, but then she can have multiple dirty diapers that don't seem to bother her much. Strange. I spoke with the GI doc yesterday and she told me that the allergist doesn't want to see Reagan. According to her, the inflammation/increased Eosinophils they saw in her GI tract doesn't usually yield conclusive results with an allergy test. Of course, the GI doc said the exact same thing about doing the scopes on her...that they probably wouldn't find anything...and they did. It's just frustrating. Reagan obviously has some serious GI problems and they are doing absolutely NOTHING to help her. And the GI doc we're seeing is supposed to be the best (at TX Children's anyway). I'm just so jaded when it comes to doctors now. I guess that happens when your child sees multiple specialists none of which can help her. I'm so frustrated. So now our only option is to give Reagan an oral steroid to try to calm down the inflammation to see if that helps with her pain. Problem is, the side effect of the medication she prescribed is diarrhea. Sorry, but we don't need any more of that right now. Ugh. We can't win. Something interesting that another parent brought up to me is that their child (who has been diagnosed with mitochondrial disorder) also has increased numbers of Eosinophils in their GI tract. Interesting. To be honest, the second Reagan's GI mentioned this, that is the first thing I thought about. Ever since our trip to Detroit, I've been thinking very seriously about having the muscle biopsy done to check for mitochondrial disorder. Dr. Chugani thinks it's worth doing and so does her local neurologist...they just want to make sure that we've done all of the easier, less invasive tests first. It's certainly not a test you want to come back positive, but I think it's something that warrants further investigation. I increased her Clobazam again today. I don't think it's going to help but I'm doing it to appease her doctor. The recent changes don't seem to be doing anything, it's not making her sleepy but it's also not helping her seizures whatsoever. Actually, now that I think about it, I wonder if the decreased head control could be related. Maybe. Today she about drove me crazy because she kept choking on her spit. It's like she forgets to swallow and then chokes and gags on it. I guess that could be related as well. I don't know. It's looking like a new medication is in our future and I just want something to work already! Please keep this in your prayers.