“Hello, Mrs. Carter. We have your son’s lab results. He has eosinophilic esophagitis and will need to eliminate dairy from his diet. We’ll send you some documents in the mail, and we’ll schedule another endoscopy in three months.” click
After years of searching for answers as to why my son would frequently vomit uncontrollably, we finally received a diagnosis: a perplexing condition that I had never encountered before, let alone knew how to pronounce.
From the time he was just three months old, my son would projectile vomit with alarming frequency. I vividly recall being in the doctor’s office, cradling a fussy baby while desperately trying to explain his symptoms. I was exhausted, reeking of vomit, armed with full-sized towels in anticipation of his next episode. When a dismissive nurse told me, “Babies spit up, that’s completely normal,” I was taken aback; moments later, my son proved her wrong by vomiting across the room. That prompted the doctor to rush in and send us for immediate GI imaging, leading to our first ambiguous diagnosis—reflux. Over the following three years, we met with countless doctors, underwent numerous tests, and were told it was either constipation or reflux and that he would eventually outgrow it.
Every outing became a source of anxiety. I’ve lost track of how many times my son has been sick in restaurants, only to be met with judgmental stares from other diners for taking our clearly unwell child out in public.
Finally, at three and a half years old, my son underwent his first endoscopy and colonoscopy. Ever had to do the colon cleanse prep? Yeah, it’s not a fun experience for a child. However, this procedure led us to the diagnosis of eosinophilic esophagitis (EoE). We finally had a name for what was making our son ill. But this was just the beginning of our journey.
The challenge with eosinophilic disorders is that while we had a diagnosis, finding an effective treatment can take years of trial and error. Over the past nine months, I’ve learned more about EoE than I ever thought possible, largely thanks to a supportive Facebook group filled with parents facing similar struggles.
Understanding Eosinophilic Esophagitis
Eosinophilic esophagitis is an allergic reaction to certain foods that occurs in the esophagus. When a trigger food or environmental allergen is consumed, white blood cells known as eosinophils accumulate in the esophagus, leading to long-term damage and symptoms like choking, coughing, and vomiting. Although some medications can help alleviate symptoms, the most effective way to treat the disorder is through food elimination. Many parents have placed their children on elimination diets due to food allergies, Crohn’s disease, celiac disease, and other conditions.
The incidence of eosinophilic esophagitis in children is on the rise. In 1995, only 5.3 out of 100,000 children were diagnosed; by 2015, that number had increased to 19.2 per 100,000. It’s not just EoE that is gaining attention; food allergies are also becoming more prevalent. This could be due to increased awareness of these disorders or possibly related to the chemicals we consume in our food—though that’s a discussion for another time.
Supporting Families with Food Restrictions
Parents of children with food restrictions, for various reasons, understand the challenges of reading labels, searching for allergen information before trying new restaurants, and ensuring that necessary medications like an EpiPen are always on hand. I’ve learned the hard way that even applying a seemingly harmless lotion without checking the label can have painful consequences.
If you’re not a parent of a child with food allergies, there are ways to show support. First, recognize that not all allergies are the same, and some children may have multiple types; my son has both EoE and traditional IgE (Immunoglobulin E) allergies. Ask your child’s teacher if any students have allergies or dietary restrictions and consider providing safe, store-bought snacks with clear ingredient labels. Be responsive to parents’ inquiries about food at parties; while I don’t expect anyone to cater their child’s event to my son, it helps to know I can bring allergy-friendly foods for him to enjoy. Understand that allergies and dietary restrictions can be serious, and a child might tolerate a certain food one day but react negatively the next. Lastly, no parent is obligated to explain their child’s allergies or restrictions to anyone.
No parent wishes for this journey for their child. I’ve had countless emotional breakdowns while navigating grocery aisles and been treated as if I were a celebrity obsessing over safe snacks at the zoo’s food stands. Throughout this experience, my son has been incredibly fortunate to have a robust support network of family and friends who ensure his safety and inclusion. I’m truly grateful for these wonderful people in our lives. Ultimately, that’s what every child deserves. For more insights into the challenges of parenting, check out this post on home insemination.
In summary, the journey to uncovering my son’s eosinophilic esophagitis has been long and fraught with challenges, but it has also been a time of learning and growth. The increasing prevalence of such disorders highlights the importance of awareness and understanding in our communities.
Keyphrase: eosinophilic esophagitis
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