Endoscopy #4, Soy, and More

When Oliver was first diagnosed, I found several blogs written by parents of EoE kids. I remember being very frustrated by the fact that most of them were not updated very frequently! I've since learned that with many (most?) patients, things just don't change very often. Once we got Oliver pretty well managed, there just really wasn't much to report on. That said, I have been a bit of a procrastinator when it comes to updating, and there is a few things to mention from the past 10 months.

Oliver had his fourth endoscopy in April. It looked great. We got the best visuals we've ever had and the biopsies looked good and were eosinophil free. This meant that soy, which he had been consuming for the past six months could now be considered a safe food. Because of this added nutrition to his diet, we started to wean him from the EleCare. I say wean, because he was very attached to drinking it! We could have pulled it cold turkey, but that would have been hard for us all and we had a few more cans to use up.  I kept giving it to him while he was trialing the soy just in case soy failed and we needed to keep it in his diet to fill in any gaps.

We did blood testing and skin prick testing with the allergist and got the okay to trial chicken, peanuts, and almonds. I was hoping for beans and Oliver was hoping for oats, but neither one of those got the allergist's okay because he was showing up positive for them on the traditional allergy tests and there is no use trying a food that might give him a "typical" allergic reaction (for more on the difference between EoE and IgE allergies, see this post). I wanted almonds because I wanted him to have another milk source, and peanuts were all clear so we added that to the list.

We started with chicken, and though we had no very obvious symptoms he started constantly asking for food. He was eating non-stop and I *think* he was again confusing pain for hunger, and it's also possible that eating would temporarily soothe the pain (I've heard from adult/older kid patients that that happens). We pulled chicken and that seemed to stop. I am now afraid to do another trial because it's just so hard to know what foods are pass and fail sometimes! If we try all three, and we get a bad endoscopy, we have to assume all three are not safe because we really don't know which one or two it could be. On the flip side, if all looks good then all three foods become safe and we added three foods with one endoscopy which is quite efficient!

We have since moved to a new state and have yet to set Oliver up with new doctors, so we really don't have a plan for the time being.

Until next time...

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.