Wednesday, June 18, 2008
I finally received an email back from the Genetics Dept on the results of the metabolic screening that was being performed in The Netherlands. All tests were normal. This is both wonderful news and discouraging at the same time. It's wonderful because she doesn't have this rare metabolic disorder (for which there was no real cure), but at the same time we're kind of back to square one. We have no leads and no ideas as to why she has the problems she has. I discussed all of this with the the geneticist this afternoon and he thinks we should come back in for an office visit so that he can check Reagan out and we can decide what (if any) tests to run next. Meanwhile, he's going to go back over Reagan's entire medical history to see if anything jumps out at him. Now...I have some more great news on the sleep front. Reagan went to bed last night around 11:15pm and slept until 4:15am (that's 5 hrs...woo woo!). I got up and fed her almost a full bottle and she was back out by 4:30am and slept until 8:30am (4 more hrs...double woo woo!)!! Unbelievable!! It was like the first week of the ketogenic diet!!! Speaking of...today I contacted the nurse practitioner that oversees the diet and she agrees that we want to give the diet a fair chance at working before we abandon it. She thinks we need to give the nighttime feeding a few more days to take effect and then Friday we can go back in to get Reagan's blood checked again to see what her levels of beta-hydroxybutyrate look like now. She may need her ratio lowered even further. Some kids just do better when they are in a lower state of ketosis...maybe that's the case with Reagan. We're still hoping and praying that this diet is going to provide her relief from these seizures! I ask that you would keep her in your prayers as well.