“Hello, Mrs. Grant, we have the results of your son’s tests. He has eosinophilic esophagitis and will need to eliminate all dairy from his diet. Paperwork will be mailed to you, and we’ll schedule another endoscopy in three months.” click
After years of searching for answers to my son’s frequent and severe vomiting, we finally had a diagnosis: a rare condition I had never encountered before, much less knew how to pronounce.
From the time he was three months old, my son struggled with intense projectile vomiting. I vividly remember sitting in the doctor’s office, holding a fussy baby while trying to articulate his symptoms. Exhausted and smelling of vomit, I carried full-sized towels, bracing myself for the next episode. A dismissive nurse told me, “It’s normal for babies to spit up,” just as my son launched a fountain of vomit across the room. This prompted a swift response from the doctor, who ordered immediate gastrointestinal imaging, leading us to our first vague conclusion: reflux. For three long years, we pleaded our case to numerous medical professionals, only to be met with suggestions of constipation or reflux, with assurances that he would eventually outgrow it.
Going out in public became an anxiety-inducing ordeal. I lost count of how many times my son vomited in restaurants, receiving judgmental glances from other diners for bringing our visibly ill child into public spaces.
Finally, at three and a half years old, my son underwent his first endoscopy and colonoscopy. If you’ve ever had to endure colon prep, you know it’s no picnic, especially for a child. But this process finally led us to a diagnosis: eosinophilic esophagitis, or EoE. We finally had a name for what was causing our son’s distress. However, this was just the beginning of our journey.
The challenge with eosinophilic disorders is that while you may have a diagnosis, finding effective treatment can take years of trial and error. In the past nine months, I’ve learned more about this condition than I ever expected, largely thanks to a Facebook group of parents navigating similar challenges.
Understanding Eosinophilic Esophagitis
Eosinophilic esophagitis is an allergic response to specific foods that affect the esophagus. When a trigger food or environmental allergen is consumed, eosinophils—white blood cells—accumulate in the esophagus, leading to long-term damage and symptoms like choking, coughing, and vomiting. While there are medications to alleviate some symptoms, the most effective treatment involves eliminating certain foods from the diet. Many parents have placed their children on elimination diets due to food allergies, Crohn’s disease, celiac disease, and other related disorders.
The number of children diagnosed with eosinophilic esophagitis 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. It’s not just EoE that’s becoming more common; food allergies are also on the upswing. Perhaps there’s greater awareness of these disorders, or it could be linked to the additives we put in our food. That’s a topic for another day.
How to Support Families with Food Allergies
Parents of children with food restrictions face the daunting task of reading labels, checking allergen information before dining out, ensuring that their child’s epi-pen and other medications are readily available, and navigating birthday parties and school events. I’ve learned the hard way that even using a little lotion on my son without checking the label can have painful consequences.
If you’re not a parent of a child with food allergies, here are some ways you can help. First, understand that allergies vary; some children have multiple types. My son has both EoE and traditional IgE allergies. Ask teachers if any children have allergies or dietary restrictions, and provide safe, store-bought snacks with clearly listed ingredients. When attending parties, communicate with other parents about the food that will be served; while I don’t expect anyone to cater to my son’s needs, having the option to bring safe foods for him to enjoy is always appreciated. Remember that allergies are serious matters; a child may tolerate a food one day and not the next. Lastly, no parent should feel obligated to explain their child’s allergies or dietary restrictions.
No parent wishes this journey for their child. I’ve had my fair share of breakdowns in store aisles and have been met with confused looks while inquiring about safe snacks at the zoo. Thankfully, my son has a strong support network of family and friends who help keep him safe and included, and I am incredibly grateful for their presence in our lives. Ultimately, every child deserves that kind of support.
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In summary, discovering my son’s eosinophilic esophagitis was just the beginning of our journey—a journey filled with challenges, learning, and support as we navigate his dietary restrictions and the complexities of food allergies.
Keyphrase: eosinophilic esophagitis
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