A Diagnosis of Food Allergy and EE
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My son Cody, almost 18 months old, was diagnosed with severe food allergies six months ago. He is allergic to milk, soy, eggs, wheat, lentils, beans, peanuts, tree nuts, and oranges.
Four months ago, he was diagnosed with eosinophilic esophagitis, also known as EE or EoE. EE is a rare disease that is thought to be related with food allergies. Currently, EE is incurable. Tiny white blood cells called eosinophils cover the esophagus causing swelling and irritation. It basically sees food as a threat. Symptoms of EE in children vary, but the most common are difficulty swallowing, throwing up, stomach ache, loss of appetite, and failure to thrive.
When we found out about Cody’s health issues, we were scared and lost. I had no idea what I was going to feed my child. So, I researched and researched. I wanted to know everything about my child’s illness. I wanted to fix him foods he would enjoy. What a task for a picky year-old eater. But every time I found a recipe he liked or a product line that was safe for Cody to eat, I was filled with joy, almost to the point of tears!
Every day is a new day and a challenging one. I fear Cody eating something that might make him swell up severely. I fear his EE and throwing up all the time and not gaining enough weight. I worry he is malnourished and hungry. I try my best to feed him “safe” foods, but unfortunately with EE, we don’t know what his safe foods are. Most of Cody’s nutrition comes from a supplement drink. It is extremely expensive, costing more than $1,000 a month. At first our insurance was not going to cover it and this caused extreme stress on my family. Luckily, our doctor has waived the cost for us! What a blessing!
Having food allergies and EE is a life-altering illness. We live in a society that revolves around food. Holiday gatherings are around food. Special dinner time is around a table of food. When you go on dates, it is usually over dinner. We have to refocus our thinking and make life about something else. When Cody goes to school, I fear he will be ridiculed for being different. Birthday parties are a tough one. How do you explain to a little child that he can’t have any of his friend’s cake because it has ingredients in it that will make him very sick? Or worse, at his own birthday party if his EE is flaring up and he is unable to eat solid foods, how do I tell him he can’t have any of his own cake? Thoughts like this break my heart and make me want to wrap my arms around him and shelter him from it all. But I know I can’t. We just have to hold hands as a family and walk through this together. I have to be strong for my son. And I know we will get through this and someday Cody will be an amazing man with so much to offer!
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