Mom to Mom: Seeking answers to a feeding problem
We always knew something was not right with our son Dominic. At the tender age of six months, he had emergency (and life-saving) surgery to remove a cyst that had formed in his intestines. He was a big spitter-upper and although that did clear up after his surgery, he still didn’t seem to like to eat. He didn’t accept solids very well and turned up his nose to many foods. I had a baby food grinder that I used on my other children. Whatever we had for dinner, I put in the baby food grinder and the kids ate it. But Dominic was different. He wouldn’t try anything.
Over the last six years, we have switched pediatricians several times to find out what was wrong. The doctors saw a defiant child who was gaining weight and meeting his milestones. They labeled him a picky eater. I saw a child who complained of stomach aches and “yucky burps,” who vomited at least once a week, and turned his head away at the mere sight of food.
We began seeing a pediatric gastroenterologist and several allergists, and after two years, we finally had a diagnosis: eosinophilic esophagitis (EE).
EE is an emerging disease that is only now being increasingly recognized in the medical profession. Basically, EE means the child has an allergy in his/her esophagus. The tissue swells when the child swallows the allergic food. Symptoms include difficulty swallowing and heartburn. Our son was repeatedly treated for acid reflux. After trying several medicines that did not work, we moved on to step two of the treatment plan, which was an endoscopy. An endoscopy and a biopsy are the only tools to diagnose EE.
The treatment starts with diet elimination of the eight common food allergens: milk, soy, egg, wheat, peanuts, tree nuts, fish and shellfish. Each food is then reintroduced for a period of time, followed by an endoscopy to check for swelling. If there is swelling, then you know which food is causing the allergy. This is to be done with each of the eight allergens. However, it is not only the eight most common allergens that can cause problems; some children will need to explore beyond those to find the right diet for them.
Treatment for EE depends on the child. Typically, a steroid is swallowed to help reduce the swelling, coupled with avoidance of the known food allergen. Steroids do not have to be taken long-term. They are given in the beginning of the treatment plan to reduce swelling. Once the swelling goes down and the food is avoided, the child should be fine. EE is, however, a chronic condition.
We are just starting on our journey of life with EE. As any parent who has a child with food allergies knows – it involves a lot of work. It means multiple grocery store visits, becoming a label-reading expert, searching for recipes, countless hours of cooking and baking special foods, bringing special snacks to school, birthday parties and sports activities – and lots of cajoling to get your child to eat!
Like many illnesses, EE has different levels. I know two moms whose EE children are on feeding tubes. I also know several moms who can monitor it with food elimination. We are still in the testing phase, so we do not yet know all of the foods causing Dominic’s EE.
Earlier this month, I attended a conference at Cardon Children’s regarding feeding disturbances. There was a breakout session strictly dedicated to EE. I learned so much about this illness. In fact, studies show of all the kids diagnosed with EE, three-fourths are boys.
If you are having a hard time with any food allergy your child has, I encourage you to seek support. While it can be difficult to maintain yet another thing on your plate, it is up to us as parents to be our child’s advocate. When you think something is wrong, you owe it to your child and yourself to seek answers.
Mom to Mom is a column written by Mary Parra, an Ahwatukee mother of four and a local journalist.