Colette Romero, an advocate for eosinophilic esophagitis (EoE) awareness, discusses the steps her family went through to find a therapy plan that worked for her son.
What eosinophilic esophagitis (EoE) treatments have worked or have not worked for your son?
Initially, he was put on a proton pump inhibitor by his gastroenterologist to see if he was a responder to that treatment alone. And then he repeated an upper endoscopy and unfortunately, there [were] still eosinophils and inflammation. So he was not one of the responders to that treatment alone. So the next step was to put them on a total elimination diet, which meant removing the top 8 allergens, including fish, soy, wheat, eggs, dairy, tree nuts and peanuts and sesame and repeated the upper endoscopy, and with that treatment, he actually went into remission, so his esophagus looked much better. And the gastro doc wanted to try to reintroduce some of those things to see if he could tolerate some or any of them. We tried 3 food trials, including wheat, and eggs, and soy, and unfortunately, after reintroducing for a couple of months and repeating the upper endoscopy, he failed each trial, meaning there was inflammation, there were eosinophils, back in his esophagus. So, the doctor decided, you know what, let's just keep him on the elimination diet, which, at age 9, he's still on a complete elimination diet. And he also put him on a swallowed steroid, which is [fluticasone] Flovent; we tried the budesonide and but that did not work for him.
So the Flovent seemed to help a lot. And he's also on cyproheptadine, which is a medication that he actually uses for the purpose of appetite stimulation—it's one of the side effects of the medication, and it has a big impact on his appetite. And one of his major symptoms is a lack of appetite and early satiety, so he just doesn't feel hungry, he doesn't want to eat, when he eats, he gets full very fast, and that contributes to his lack of weight gain. So with that medication, it does help a lot. And also the swallowed steroid. His numbers have been very, very low. Also at times, he occasionally will really want something that's, you know, outside of his elimination diet. And that kind of covers him in those instances, which are rare. But, you know, we don't want to be so strict that it causes problems down the line. So one of his favorite things is dumplings. And of course, those often have wheat. And so he makes the choice to have a cheat day, when we go and have dumplings, and he will get a flareup, but for him, it's worth it. And we do treat with the steroid twice a day swallowed. So that that helps.