My Son Has Eosinophilic Esophagitis (EOE)

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When Feeding Problems Aren’t Just Reflux But Something More Severe

Courtesy of Lindsey Neumann

My son has had feeding difficulties since he was a newborn.  He was born slightly prematurely at 36 weeks with his twin sister. He arched his back and turned his head at an awkward angle when feeding, would pull his legs up in pain, and was a very fussy sleeper. He spit up copious amounts of formula. He would often wake up crying in pain. When I described the symptoms to our pediatrician, he said that he had reflux and put him on Prevacid.  I saw an immediate difference in his sleep and behavior while he was on reflux medication.

I weaned my son off Prevacid around seven months old. He had a ferocious appetite and he would often throw up a large amount after eating pureed or solid food. When my son was one a half years old, he began throwing up frequently. He would throw up multiple times a day. I knew that he was teething and attributed it to reflux. We repeatedly took him into our pediatrician, who recommended over-the-counter Prevacid. It didn’t appear to help his symptoms — in fact, I believe that it made them worse. My son would go on to intermittently have periods of vomiting correlated to drinking milk products or eating fast food. He became an extremely picky eater. He used to eat a variety of food and was now relatively selective in eating a few solids foods, but preferring puree packets.

As my son approached the age of two, I realized there was something truly wrong with him. He would often get a pained look on his face when eating and request water to help get his food down. I began taking my son to various doctors hoping that someone could provide him relief. I was told by more than one doctor that my son was constipated or had sensory aversions. I took my son to a functional medicine doctor who diagnosed him as having multiple food intolerances. I proceeded to remove gluten and dairy from his diet. I immediately saw changes in his behavior, mood and sleep. I took him to an allergist who diagnosed him as having a mild grass allergy and no food allergies according to patch testing.

Courtesy of Lindsey Neumann

I knew that I was still missing something.  One of my friends recommended circling back around with a GI doctor.  I described my son’s symptoms to the doctor and showed him a video of my son coughing and choking while he drank a milkshake. He responded that all of the symptoms I described were concerning to him and he recommended an endoscopy. I knew that he was a conservative doctor and that he had an idea of what was going on with my son.

Throughout this nine-month period, I was a complete and total wreck. I couldn’t sleep, couldn’t eat, and was barely functioning. I felt extremely alone and didn’t know who to turn to. I knew that there was something wrong with my son, but couldn’t seem to get any answers. For me, there was no worse feeling than watching my child suffer day after day and not knowing how to help him. I was determined to get to the bottom of his mysterious ailment. While he appeared normal on the outside, I knew there was something going haywire inside his body.

My son continued to have alarming symptoms. He complained of stomach pain, occasionally threw up, and was extremely aversive to food and drinks in general. He would often chew up a food and then spit it out. I began to make a correlation when he ingested products with corn, gluten, or dairy in them. He would often exhibit a croupy like cough while eating and at random times during the day. At his lowest point, he had severe reflux when drinking tap water and different brands of bottled water. He would slowly drink water from his canteen and then proceed to spit it out.

My son didn’t look healthy. He had dark circles under their eyes and was very pale. He had a constant diaper rash and Aquafor became a mainstay at our home. He was becoming skin and bones. Tears came to my eyes when I saw his frail body in the bath. He had lost 4 pounds and his 3T shorts no longer fit him. He was becoming more irritable, volatile, and emotional. I was desperate to get him some relief.

I started to hold my breath during snack or meal times. I waited for my son to cough or choke signaling that he couldn’t tolerate a food. I took notes of his reactions on my cell-phone to share with our GI doctor. My son was very sensitive to certain textures and noises. I began to look online and wondered if he had a sensory processing disorder. I started to make associations with him exhibiting abnormal behavior directly after a meal. He would often make a “la la la” noise or act in an aggressive manner after drinking milk. I would ask him to be quiet or to stop hitting his sister and he would reply, “No, I can’t.” I don’t think that he had any control over his emotions or behavior due to his discomfort.

I was filled with apprehension the day before my son’s endoscopy. I started to second guess and doubt myself. My son did great the morning of his endoscopy. I was incredibly nervous as we waited to speak with the doctor. What if I had taken him off all of his food allergens and nothing showed up in the scope?  What if he had a bacterial infection called h-pylori? What if everything came back clear and I was back to square one?

His GI doctor gave me an a-okay sign as he exited the room. He went over the scopes with us. The results were as follows: Normal examined duodenum — biopsied. Normal stomach — biopsied. Esophageal mucosal changes suggestive of eosinophilic esophagitis — biopsied. He showed us that my son’s esophagus had several tiny white spots on it indicative of EOE. Our GI doctor looked me right in the eye and said, “I’m highly suspicious of him presenting with eosinophilic esophagitis.  Let’s see what the biopsies show.”  There it was. I hate to say it, but I felt relieved to have a name for my son’s symptoms. I finally had some answers.

EOE has been referred to as “asthma of the gut.” If you have seasonal allergies, eosinophils are in your nose; if you have asthma, they are in your lungs; and if you have EOE, they are in your esophagus. My son does not have a typical allergic reaction. Thankfully, he does not break out of in hives or go into anaphylaxis. But he has an ever-increasing number of foods that damage him internally. These foods affect his digestion, sleep, behavior and his ability to function on a daily basis.

I do want to encourage all parents to not give up if you feel that something is wrong with your children.  In the end it’s up to you to advocate for them. I can’t tell you how many times I’ve had doctors blow me off, tell me that it’s common for kids to be picky eaters at this age or suggest that he has sensory aversions. I was continually told by family members that my son would outgrow his vomiting and food aversions. EOE that has gone undetected for several years can result in strictures and closing of the esophagus resulting in dependence on a feeding tube.

Patients with eosinophilic disorders are quite literally allergic to food and environmental allergens. The proteins in the food cause a build-up in the digestive tract and blood of a white blood cell called eosinophils. Eosinophils are meant to attack parasites, but the body of a patient with EGID’s mistakes food for a parasite. As a result, the buildup of eosinophils causes numerous and very serious health problems, including failure to thrive, uncontrollable vomiting, acid reflux, severe stomach and throat pain, inability to sleep, and joint pain, just to name a few.

As my son approaches his fourth birthday, he is currently in remission due to a combination of acid reflux medication and diet elimination for GERD and EOE. At this time, we have eliminated eggs, dairy, soy, pea protein and legumes, meat, most grains, gluten, fish, coconut, tree nuts, potatoes and many fruits and vegetables. It’s easier to list his “safe” foods, which include: rice, applesauce, grain free crackers, raisins and lettuce. These foods do not provide an adequate amount of nutrition so my son supplements his diet with a daily allowance of prescription formula. In addition, my son is allergic to grass, pollen and several medications. He has been a little trooper since his diagnosis, despite the real and scary challenges he faces, along with the medical side effects this disease carries.

There is no cure for EOE. He will not grow out of it. He will always have it. We refuse to sit back and let this disease take over. It has been found to be the lowest quality of life of chronic illness — but we fight every day to give him as normal a life as possible.

National eosinophilic awareness week is May 19-25, 2019. You can read more about eosinophilic disorders at the CURED Foundation…https://curedfoundation.org/.