“E-Something”: Abby’s Sudden Inability to Swallow Leads to a Clear Diagnosis

Eosinophilic Esophagitis….it’s a mouthful. For a while, my daughter called it “E-something” when trying to explain to others about her condition. In January 2011, I received a call from my daughter’s pediatric gastroenterologist. Abbey had been diagnosed with a condition that I had to ask her to repeat and spell. She went on to explain it to me in detail, and I felt completely overwhelmed.

It all started one evening we were eating dinner, and she complained that she could not swallow her chicken. Over the next few days she complained a few more times about not being to swallow. Finally she said, ”Mom…I can’t even swallow my own spit.” Looking at the prior months…I started putting things together. She wasn’t eating, she had lost weight, she complained of pain in her chest and now she can’t swallow. I called the GI’s office and left a message for her doctor. She called me back that morning and insisted we have her first of seven upper endoscopies done.

Soon after is when I would hear the term eosinophils for the first time. Somehow, Abbey’s body had decided that certain foods were dangerous and needed to be attacked. The question was…which foods. It could be anything, or everything. I started looking online for information on this rare disease. As I started my research, I read case after case about children restricted to feeding tubes or elemental formulas to get their nutrition. Children and adults who are limited to four or five “safe” foods. I was both scared and relieved at the same time. Clearly, Abbey had more safe foods than unsafe foods. We hoped.

Today we are in a better place. She has accepted her condition and doesn’t let it define her. There are days when it can consume her…but she no longer allows it to gain such dangerous momentum. A slight flaw in her genetic make-up has created an obstacle, but she can manage it and knows that it could be worse. At 13 years old, she handles it all very well. I am so proud of her courage, determination and strength. Adolescence is hard enough, but to add on a serious, ever-changing medical condition is beyond frustrating. She has managed to do so with the perfect combination of maturity, bravery and even humor.