Friday, August 17, 2012
I'm still SO exhausted!!! We all slept pretty well last night, but boy am I worn out!! Ryan too. He fought naps all morning and then when he finally fell asleep, he slept for hours!! Reagan woke up this morning still very much on edge. She woke up with a little gag here and there but overall she wasn't very nauseous today. She has been going back and forth between the crazy laughs and crying outbursts all day. I gave her Lortab this afternoon to settle her down at one point...it helped her relax for an hour or so, but that's it. We've had some major nursing issues this week and next week it seems we'll be starting over with two new nurses. That's all I have to say about that. Prayers are appreciated in that area. Reagan has been very similar today to yesterday. She seems very sensitive to stimuli...she prefers not to be messed with. Diaper changes or even just trying to talk to her, seems to aggravate her and the nausea is back again tonight. This is something we talked to Dr. Kendall about. She thinks Reagan may be having stomach migraines that are cyclical in nature and essentially what we call her bad days (aka cyclic vomiting syndrome). Unfortunately every medication she suggested (or nearly every one)...we've already tried. She's going to keep thinking about that one. She also thinks it's possible, not likely but possible, that Reagan's mitochondrial disease (which is clear from her muscle biopsy enzymology) may be secondary to something else...possibly a seizure gene. That would explain why none of the typical mitochondrial gene testing has come back positive. She wants to go over the tests that have already been done and then probably order a panel of tests looking at seizure genes. Just in case. An interesting idea. No one has ever really suggested that. Makes sense since the majority of Reagan's issues are neurological. She also made a couple of suggestions on additional mitochondrial supplements that we've never tried (Alpha Lipoic Acid and L-arginine). And the last thing she mentioned was IVIG. It's been shown to help with inflammatory conditions (even in kids that don't have immune issues). Reagan does have immune issues and it's possible that these bad cycles she goes through have an inflammatory component. We have a friend who's little boy is about to start IVIG for treatment of seizures. All interesting ideas. We'll see. Prayers for my girl to get over this nausea and have a better weekend!!