First, we discussed the gastric emptying scan. She confirmed it was abnormal and that KayTar is having motility issues. I asked if the half-emptying time is volume-dependent (meaning that it always takes her stomach 73 minutes to just move 1.5 ounces out) or not (meaning that 4 ounces would move through in the same time frame if it was half of the stomach's contents), and she said in MOST people, it is not volume-dependent and the stomach should half-empty in the same time threshold whether there was 3 or 8 ounces in there to start. However, she qualified that with a "BUT, this is KayTar, soooo I can't say if that is the case here or not. Her motility may worsen with increased volume." Basically, the scan was enough to confirm the clinical symptoms we were observing in her sudden volume intolerance and increased reflux, but it can't give us more precise information.
Then, she gave us the new plan. She is switching KayTar's PPI from Prevacid to Nexium, which we will start tonight. Then, in two weeks, she wants us to try to transition KayTar back to her normal formula volume. If it works, great! If not, then we will start giving KayTar a dose of Augmentin prior to every feed as a prokinetic to help induce more normal motility in her gut. If we are still unable to get her back to regular feeds, we will just continue with this smaller/more frequent feeding schedule, and follow up in January. She said she likely will not order any further testing until summer (at the earliest) because she doesn't want to disrupt KayTar's school schedule and the next tests are rather unpleasant. She said that if her overall intake and growth continue to be good, we may put it off until it is really necessary to put her through. Hopefully one or both of the new medications will help get her back on track, but if not, I'm fine with the plan she has laid out for KayTar.
Finally, we discussed what might have triggered this change. She said it may be a post-viral phenomenon from her relatively minor viral infection in June...but probably not. She said it may just be "a KayTar thing", which is the category most things fall into. She also said it could be disease progression (what disease? we don't know!), but that said she'd like to ignore that last one and that I probably would, too. She is definitely right about that. Losing ground is one of the hardest parts of any disorder/disease, I'm sure, but it is especially hard when you don't even know what disease is causing it to happen and if it might be preventable if you DID know what you were up against. So, for now, we are just going to keep on trucking and not worry too much about that aspect of it. We'll try the new medications and then go from there, depending on what the results are. The new feeding schedule isn't the worst thing to ever happen, in fact, she hasn't vomited once at school this year (knock on wood), but it is more disruptive for her and for the people caring for her, whether at school or at home....so if we can get her back to "normal" (or maybe even up to 6 ounces every 3 hours), I think everyone would be pleased!
|Completely unrelated photo ;)|