It is a wonderful blessing to learn that Nathan doesn't have a long list of typical food allergies, as that would only further complicate things in trying to find him safe foods. As if it isn't already complicated enough. However, it's not exactly helpful in telling us what makes his EE worse. He never ate peanuts a day in his life, so we know that they weren't the culprit in irritating his esophagus. I kinda feel like we are back at square one with figuring all this EE stuff out. It's highly possible that some of the things Nathan was tested for today are in fact irritating his esophagus, but there just aren't any standardized testing methods to test for "delayed allergic responses", which are how EE operates.
The only avenue we have at this point is to continue food trials and see how things go and continue giving Nathan his Pulmicort mixed with Splenda once a day. Pears have worked now for two weeks which is encouraging. We will try a new fruit for two weeks at a time until his next endoscopy/biopsy the beginning of June. Dr. Irani feels that Nathan will have many food options if he stays on this medication, but it is a steroid and they aren't good to be on for long time periods. If we chose to take Nathan off of the Pulmicort, he would likely only be able to consume his EleCare formula. Talk about being between a rock and a hard place. A cure for this can't come soon enough... it just doesn't make sense that the only way our child can tolerate foods is to take a steroid for this entire life! I can't even begin to describe how frustrating this is!
For now we will see how that apples go, and hang in there the best we can. I know this will get easier at some point and I thought we were getting there. But today's visit with Dr. Irani sends us back to the reality of EE and how difficult it is to treat and that has knocked me back a bit.
good luck with the apples, i know that apples are already a little hard to digest but we have been sucessful with them and they are something that Roe has liked consistantly.
ReplyDeleteI have to say i am learning so much from your blog, thank you for sharing!