Colette Romero, Advocate for EoE Awareness, Discusses Diagnosis Journey

Diagnosis delays in eosinophilic esophagitis (EoE) are common, and Colette Romero's son had symptoms soon after birth but was not diagnosed until age 3.

Transcript

How old was your child when he or she was diagnosed with eosinophilic esophagitis (EoE), and was it difficult to get a diagnosis?

So my son was 3 years old when he was first diagnosed with [EoE]. But there were signs and symptoms well before that, actually from birth. So he was born at almost full term, around 37 weeks, but he was very small. He was small for gestational age, they said, just a little over 5 pounds. And right from the beginning, he really struggled with nursing. He was very fussy, he had a lot of reflux. And then he started to have full body hives, and eczema, and failure to gain weight. So we were constantly in at the doctor's offices, at the lactation consultant every week for weigh-ins. And so the doctors were kind of clued in that there was some allergic process going on. And finally [at] around a year, we were referred to an allergist who put me on an elimination diet and did scratch testing, and revealed that my son was allergic to peanuts and tree nuts. So I went off of those things, I went off of all peanuts, tree nuts, dairy, wheat, and continued to nurse. And when we started with the solids, that didn't go well either, he continued to struggle with reflux, he would choke, he would vomit, and he failed to gain weight. So finally, they referred to a gastroenterologist, who put my son on a [proton pump inhibitor] to kind of help with the inflammation and the reflux. But after some time, you know, he said, I think we need to do an upper endoscopy because he's just not thriving, he's not gaining weight, and he just seems pretty miserable. So they did the [esophagogastroduodenoscopy], and that's when it was revealed that he had [EoE] at age 3, and we were just really glad to know what was going on and to put a name to it, and to know that there were some treatment options, because it just felt like there was hope at that point. Whereas before, it was just a constant state of anxiety and worry as a mother. Also, the primary care doctor really didn't know what was going on, since we were trying everything. And so that's how he was diagnosed.