Parenting Insights
From the moment my son was born just shy of 36 weeks alongside his twin sister, it was clear that feeding would be a struggle. He exhibited unusual behaviors during feedings—arching his back, turning his head oddly, and pulling his legs up in discomfort. He was a fretful sleeper and frequently spat up large amounts of formula. Nights would often be interrupted by his cries of pain. When I shared these concerns with our pediatrician, he diagnosed him with reflux and prescribed Prevacid. Almost immediately, we noticed improvements in his sleep and overall demeanor.
As my son reached seven months, I decided to wean him off the reflux medication. Despite his insatiable hunger, he would often vomit significant amounts after consuming pureed and solid foods. By the time he was one-and-a-half, the vomiting had escalated to multiple incidents daily. While I initially thought it was just reflux, I began to suspect something more serious. Our pediatrician suggested over-the-counter Prevacid again, but it seemed ineffective—if not worse. My son started to have sporadic vomiting episodes, especially after consuming dairy and fast food. He transitioned from a diverse eater to an incredibly picky one, gravitating towards purée packets and rejecting many solid foods.
As he neared two years old, I recognized that his struggles were more severe than I had anticipated. He often grimaced while eating and would ask for water to help swallow his food. My search for answers took me to various doctors, with some suggesting constipation or sensory issues. A functional medicine specialist finally identified multiple food intolerances, leading me to eliminate gluten and dairy from his diet. Almost instantly, I noticed positive changes in his mood and behavior. An allergist later diagnosed him with a mild grass allergy but found no food allergies.
Despite these adjustments, I felt there was still an underlying issue. A friend recommended revisiting a gastroenterologist. After discussing my son’s symptoms and showing a video of him choking on a milkshake, the doctor expressed concern and recommended an endoscopy. His conservative approach suggested he suspected something significant was at play.
During the subsequent months filled with worry, sleepless nights, and feelings of isolation, I was determined to uncover the root of my son’s health issues. Despite appearing healthy externally, I knew something was amiss internally. My son continued to exhibit distressing symptoms—complaining of stomach pain, vomiting occasionally, and demonstrating a strong aversion to food and drinks. He would chew food only to spit it out, and I began to notice a pattern with corn, gluten, and dairy. His cough became croup-like while eating, and his reactions to certain foods were alarming.
At his worst, he struggled with severe reflux even when drinking water. The sight of his pale complexion, dark circles under his eyes, and constant diaper rash was heart-wrenching. He had lost weight, and as he became increasingly irritable and emotional, I felt a deep sense of desperation to find relief for him.
Meal times turned tense as I held my breath, anticipating potential choking or coughing episodes. I documented his reactions on my phone, hoping to provide clarity for our GI doctor. His sensitivity to textures and sounds led me to consider the possibility of sensory processing disorder. After consuming milk, he would often make strange noises or exhibit aggressive behavior, as if he had no control over his discomfort.
The day before the endoscopy was filled with apprehension and self-doubt. However, when the procedure day arrived, my son handled it remarkably well. I was anxious as we awaited the doctor’s updates. What if the allergens had been removed and nothing showed in the endoscopy? What if he had a bacterial infection like H. pylori?
When the GI doctor came out, he gave me a thumbs up. He reviewed the results with us: the biopsies showed a normal duodenum and stomach but indicated esophageal mucosal changes suggestive of eosinophilic esophagitis (EOE). He looked me in the eye and stated his strong suspicion of EOE. Although it was challenging to hear, I felt a sense of relief to finally have a name for my son’s struggles.
EOE, often likened to “asthma of the gut,” occurs when eosinophils build up in the esophagus due to food proteins mistakenly identified as parasites. My son doesn’t experience typical allergic reactions, but he suffers from significant internal damage from an increasing number of foods. These intolerances impact his digestion, sleep, behavior, and daily functionality.
To all parents facing similar challenges, please persevere if you sense something is amiss with your child. Advocacy is crucial. I cannot emphasize enough how many healthcare professionals dismissed my concerns, attributing my son’s struggles to common childhood behavior. EOE can lead to severe complications, including strictures in the esophagus.
As my son approaches his fourth birthday, he is currently in remission due to a combination of acid reflux medication and dietary eliminations for GERD and EOE. We have removed a wide array of foods, making his diet quite limited, and he relies on prescription formula to supplement his nutrition. Despite his allergies to grass and other environmental triggers, he remains resilient in facing the challenges posed by this condition.
There is no cure for EOE, and it will not simply disappear. Our family refuses to let this illness dictate our lives. While EOE is recognized as having a significantly low quality of life, we strive to provide my son with the most normal existence possible.
For further information on eosinophilic disorders, I recommend checking out resources like the CURED Foundation. Additionally, if you’re looking for more insights on fertility journeys, consider reading about couples’ experiences with intracevical insemination at Make a Mom and listen to expert discussions on Cleveland Clinic’s podcast.
Summary:
This article chronicles a mother’s journey to uncover the severe feeding difficulties faced by her son, ultimately leading to a diagnosis of eosinophilic esophagitis (EOE). Despite a series of misdiagnoses and emotional turmoil, her persistence in seeking answers brought relief and clarity. The narrative emphasizes the importance of parental advocacy in the face of medical uncertainty.