From the moment my son, Alex, entered the world at 36 weeks alongside his twin sister, he struggled with feeding. He would arch his back, twist his head at odd angles during meals, and pull his legs up in discomfort. His sleep was a constant battle, and he frequently spit up large amounts of formula, waking in distress. After explaining these signs to our pediatrician, we were told it was reflux, and he was prescribed Prevacid. Almost immediately, his sleep and temperament improved while on the medication.
However, when I weaned him off Prevacid at seven months, his voracious appetite was overshadowed by frequent vomiting, especially after consuming pureed or solid foods. By the time he turned one and a half, he was throwing up multiple times a day. Though I initially attributed this to teething, our pediatrician suggested over-the-counter Prevacid, which seemed ineffective and possibly worsened his symptoms. Over time, I noticed that he had episodes of vomiting that coincided with dairy or fast food consumption, and his once varied diet shrank to a limited selection of purees.
As Alex neared two years old, it became clear that something more significant was affecting him. He often displayed signs of pain while eating and requested water to help swallow. I sought opinions from different doctors, but many dismissed his symptoms as constipation or sensory aversions. After visiting a functional medicine specialist who identified multiple food intolerances, I eliminated gluten and dairy from his diet, resulting in noticeable improvements in his mood and sleep.
Despite these changes, I still felt something was amiss. A friend recommended revisiting a gastroenterologist. After detailing Alex’s symptoms and showing a video of him coughing and choking on a milkshake, the doctor expressed his concerns and suggested an endoscopy. I was anxious yet hopeful, desperate for answers.
The nine months leading up to this point had taken a toll on me. My stress levels were overwhelming; I was unable to sleep or eat properly, feeling isolated in my struggle to help my son. Watching him suffer without understanding the cause was agonizing. Though he appeared healthy, I was acutely aware that something was wrong internally.
Continued symptoms such as stomach pain, vomiting, and aversion to food persisted. Alex would chew food only to spit it out, and I began to connect his reactions to corn, gluten, and dairy. He exhibited a persistent cough while eating and even struggled to drink plain water. His physical appearance deteriorated, with dark circles under his eyes and significant weight loss. I became increasingly worried about his well-being.
Meal times turned into a tense ordeal, where I anxiously awaited signs of discomfort. I meticulously documented his reactions to different foods, suspecting he might have a sensory processing disorder. After meals, he would act out in ways that seemed uncontrollable, particularly following milk consumption.
The day before the endoscopy was filled with doubt and apprehension. Would the tests reveal anything? I feared that my efforts to eliminate allergens might lead to inconclusive results. However, when the gastroenterologist emerged with a thumbs up, I felt a glimmer of hope.
The endoscopy findings were significant: normal biopsies of the duodenum and stomach, but changes in the esophagus suggested eosinophilic esophagitis (EOE). The doctor explained that EOE, often termed “asthma of the gut,” involves an abnormal accumulation of eosinophils in the esophagus, triggered by food. Unlike typical allergic reactions, Alex’s symptoms stemmed from an internal response to various foods, causing ongoing damage to his body, affecting everything from digestion to sleep.
I urge any parent who suspects something is wrong with their child to persist in seeking help. Too often, I encountered dismissive attitudes from doctors who attributed my son’s symptoms to common childhood issues. EOE, if left untreated, can lead to severe complications, including esophageal strictures.
As Alex approaches his fourth birthday, he is currently managing EOE and reflux through a strict elimination diet and medications. We have removed numerous foods from his diet, including eggs, dairy, and gluten, which has limited his nutrition. He relies on a prescription formula to supplement his intake. Despite the challenges, Alex continues to show resilience.
While there is no cure for EOE, we refuse to let it dictate his life. As a family, we strive to maintain as much normalcy as possible amid the struggle. For those navigating similar journeys, know that you aren’t alone. There are resources available, like this guide on in vitro fertilization and insights on pregnancy tests, which can help in your fertility journey.
National eosinophilic awareness week is May 19-25, 2019. For further understanding of eosinophilic disorders, visit the CURED Foundation.
Summary:
This article recounts a mother’s harrowing journey with her son, Alex, who faced significant feeding issues due to eosinophilic esophagitis (EOE). Initially dismissed as reflux, his symptoms escalated until a proper diagnosis was made through an endoscopy. The challenges of managing EOE and the importance of parental advocacy in the face of medical uncertainties are highlighted.