Anyone still there? Whew, lots of dust has accumulated!
So, what’s going on? It’s been fairly crazy here. For the last year, Kieran has battled cyclic vomiting episodes. We’re lucky because he was referred to specialists after just the third episode (did I mention that every episode save one has required a trip to the ER and/or an overnight stay?).
There is something called Cyclic Vomiting Syndrome (CVS), which he may or may not have. It can only be diagnosed by ruling everything else out, which is what we’re in the process of doing. At first, the pediatrician suspected an Inborn Error of Metabolism, but the geneticist we saw didn’t think the lab values bore that out (of course, she also suggested that Kieran’s episodes are so bad because of psychological reasons, because vomiting and getting poked with lots of needles is so much fun). That doc didn’t want to follow up, and that was fine.
We’ve been following up with GI, though. Even though he has never complained of headaches, that doctor wants a brain MRI just to be sure, so that’s tomorrow. At least he can watch a movie of his choice during it. Later this month he has an upper endoscopy with biopsy and impedance probe.
We’re on the wait list for a different geneticist recommended to us by one of the ER doctors, who also happens to go to our parish so we see him quite often.
He’s on a couple of medications now, which have their own side effects so we’ve had to adjust doses. We’ll see if they prevent further episodes. Right now it’s been about a month since the last episode. July was rough, as he had two episodes in July, and one in June
But the most heart-wrenching thing in all this is seeing Kieran during an episode. He vomits 5+ times in an hour sometimes, sometimes with blood. Zofran sometimes helps, and sometimes doesn’t. In between episodes, he talks about it a lot, about how he hopes he doesn’t get sick again, how he doesn’t want to be poked with needles anymore. He’s been preparing an activity bag for his next hospital visit, if he has another episode that bad. Hopefully he doesn’t need that, and hopefully we have more concrete answers soon.