No one expects a healthy child to develop an incurable disease. I know I didn’t.
Like any first-time mother, I was excited when Joshua first started eating solid food. He readily downed diced carrots, peas, bananas and potatoes.
But when he reached 10 months, mealtime became mayhem. He resisted, gagged on and vomited basic foods. Reading baby books calmed my nervousness. It was just a little spit up, right?
But the gagging worsened. I painfully watched him lose the ability to swallow even a teaspoon of pureed food. Eating became dreaded and painful for Joshua, my husband and me. We held our breath when he swallowed, praying the food would stay down. He needed the nutrients. What else could we do?
Joshua also developed problems with breathing and became allergic to grass, pollen and trees. He apparently inherited my asthma gene. Round-the-clock nebulizer treatments seemed excessive and did not really help his wheezing.
When I returned to the workforce after his first birthday, I felt an inner struggle. I worried about whether a caregiver would be as sensitive as I was to his wheezing and flare-ups.
At the onset of symptoms, I grabbed Joshua’s emergency room bag and a carryout dinner for the all-expense-paid trip to the emergency room. This, not the career fast lane, became normal.
Another family gene, eczema, also took over his innocent body. Perpetual scratching led to pulling his hair out.
Lathering him with ointments and oils only modestly helped improve his dry skin. Doctors prescribed steroid creams that helped slightly. But how would steroid medication affect his growth?
We saw these ailments, and doctors treated them, as separate complaints. By this point, Joshua tolerated only a handful of “safe” foods and continued to fall behind his age group on weight gain.
I literally became Dr. Google, moonlighting on medical websites and trying to find answers about his overlapping conditions.
My sleuthing paid off when I stumbled across a disease that included allergies, eczema and vomiting. Since the most pressing condition was Joshua’s inability to swallow, I sought out a gastroenterologist.
Within days, he performed a biopsy and diagnosed Joshua with eosinophilic esophagitis. Known as EOE, this disease cripples the immune system. Infection-fighting white blood cells called eosinophils attack the body and the esophagus. Having EOE means that Joshua is allergic to most food. This results in swelling and irritation throughout his gastrointestinal tract.
Other manifestations include the eczema and allergies. Researchers do not know what causes EOE. While it does not appear to be genetic, some predetermining factors are asthma and allergies.
Joshua started a liquid amino acid-based formula, Neocate, considered a standard nutrient for those diagnosed with EOE. In more severe cases, doctors recommend feeding-tube therapy. Joshua is still under evaluation for a feeding tube.
I was relieved to know that Joshua’s condition had a name. At the same time, I was overwhelmed that he had a disease with no boundaries or cure.
In addition to the daily unexpected symptoms of EOE, what concerns me is that children elsewhere may suffer from these ailments and not know it.
Joshua is now 2, and his courage inspires me. Despite his three-page résumé of medical terminology, reactions, medications and hospitalizations, and more than a dozen caregivers, he powers through it.
And that for me is food for thought.
Dawn McCoy of Chesterfield County is a writer and consultant.
– Dawn McCoy (source richmond.com)