Endoscopy Results, Allergy Visit, and No More Corn

The post title pretty much says it all, but if you want some more details, read on..

Oliver had biopsies with 20+ eosinophils in them (others had just a few). 20+ is high enough to diagnose, so that's not really a good thing. However, the gastroenterologist was not concerned about this, because he saw it as an improvement (an improvement over his initial endoscopy, but not over his second one, I should have called him on that, but I didn't). Jordan and I aren't satisfied with these results, and crossed fingers and toes that the allergist (whom we had an appointment with just days after we received the results) wouldn't be satisfied either.

Our allergist seems to know his stuff, but he's very much a man of few words. He looked over the results and then suggested skin prick tests. The skin tests showed a positive reaction to corn. So we pulled corn from his diet. This has proved to be a tricky one because it involves removing foods that have always been safe for him, but he's doing quite well with it. Probably because he's still very much in a "out of sight, out of mind" stage, so if we don't have it (or it is hidden out of view), he does very well when I say "we don't have any of that". I have explained to him that he can't have corn anymore,  but he just started telling me that things don't have corn in them, so I've found telling him we don't have something (and tossing a few things so that can be true) works best.

Almost immediately he started sleeping better. It seemed too quick to be linked, but it's hard to know for sure. He's been sleeping very poorly for the past two months or so, and it was so nice to be able to go the entire night without him waking up and crying! After a few days, his appetite also improved. He's been consistently eating well for the past five days or so. Though his weight gain has been okay, I've still been very worried about his lack of eating (and drinking his formula) over the past very long time, so it's nice to seem him eating! Again, pretty quick changes, so it's hard to know if it's connected to the corn removal or just a fluke.

We'll follow up with his allergist in six weeks and go from there.

He's Growing!

Today we headed back to the nutritionist for a follow-up. She was very pleased with his weight. Since he started on EleCare, he's gained a half a pound each week! We are so very lucky that he will drink this stuff. It doesn't taste good at all. I guess in his short life he really hasn't tasted too many things, so he doesn't have a wide variety of things to compare it to. It was slow going at first, but after a few days he decided it wasn't so horrible, and for that we are incredibly grateful.

First Post-Diagnosis GI Visit

Today we went to the GI for our first visit with him since the endoscopy last month. Jordan attended the APFED Patient Education Conference this past weekend and, as a result, had many questions for our doctor. The doctor would like us to try to wean Oliver off the budesonide to see how he does without any medication and just on diet modifications. We are currently at two doses a day and we are supposed to do one dose for a week and then a half a dose for a week. He didn't specifically state when he wanted to do another endoscopy and this seemed to bother Jordan. I left the appointment feeling okay about things, but Jordan was not as content. His complaints are all things that can be discussed and sorted out at a future visit. Jordan is concerned that we aren't doing things systematically enough, that we aren't testing one variable at a time. I argue that that's difficult given our situation (Oliver was already off so many things pre-diagnosis and we don't want to re-introduce them right now just so we can more accurately figure out what is causing the eosinophils in his esophagus, plus for the most part he's only ever gotten the "bad things" via my breastmilk). I also feel like we need to do whatever we need to right now to get Oliver to gain weight (He's gained approximately a pound in the past eight months) and the GI and the allergist agree with me. Jordan also agrees that that is important, but still wishes things could be a bit more systematic.