On this day in 2010, my tiny, unbreakable five-year-old daughter got the world-changing news that she would be allowed to eat eggs.
For more than six weeks before this photo was taken, Sammi had been asked by her team of gastroenterologists to avoid contact with — and certainly ingestion of — any foods containing dairy, wheat, soy, nuts, fish, or eggs. She was already a vegetarian, and this diet was meant as a way to pinpoint the source of her new, puzzling diagnosis: eosinophilic esophagitis.
We waited both anxiously and in frenetic motion for the first phase of this diet to be over. I hadn’t been afraid of experimenting with my cooking, desperate to find foods that mimicked those we’d eaten in our prior life, but I discovered to my growing disappointment that cooking a vegan, gluten-free, nut-free menu for three meals a day would require nearly all my attention and still be met with regular catastrophe. When it was time to add the first forbidden food back in to her diet, she chose eggs. They were crucial to so many of the things she missed most: matzo balls, deviled eggs, and something resembling a cookie.
I’m writing about this again (I covered the excitement of the day in a previous post) because the single most popular page on my blog is the post called Practicalities of the Six Food Elimination Diet. It is a post written with the memories of the desperation I felt during the early days of this diet, working like a mad scientist, seeking ways to bind starches and proteins, to flavor the world my daughter inhabited. I was in it for the long haul, I thought. I’d heard horror stories about how likely it would be that my daughter would never eat a normal diet again, that the foods her body could tolerate now would eventually become foods her body would reject violently. I cooked and experimented and baked and threw away and started over many times a day.
Years later, with the knowledge that her diagnosis with eosinophilic esophagitis was wrong, I keep coming back to the words of a radiologist who saw Sammi in 2013. You can read the story of her “swallow study” here, but the most important part is his impression that eosinophilic esophagitis was becoming a trendy diagnosis.
It has taken me years to process that idea.
Could it be, I wonder, that medical professionals are susceptible to popular diagnostic trends in a way that blinds them to less-common possibilities?
Could it be that the low-hanging fruit is the only fruit visible to some specialists?
Could it be that Sammi is not the only child to be misdiagnosed with eosinophilic esophagitis?
In the groups on Facebook dedicated to vascular rings — the kind of structural abnormality that Sammi eventually had corrected and then re-corrected — the stories that parents tell are shockingly similar. They sensed something was wrong with their child, they got told nothing was wrong, they persisted, the child failed to thrive, they persisted again, the doctor scheduled an X-ray, the child choked on liquids or was hospitalized with respiratory infections, and finally, an unmistakably dangerous infection threatened the child’s life enough that the doctors finally, finally believed the parents. After surgery, these parents often leave the Facebook groups because there’s nothing more they need there; their baby is well.
Like the parents of children healed from their cardiac surgeries, I left the pages and forums dedicated to eosinophilic esophagitis. For the huge numbers of very sick children whose parents post there, I knew that I would represent everything they wanted: their children’s diseases disappearing overnight, a miraculous solvable problem identified and resolved. In their shoes, I’d resent me.
It has been six years since my daughter spent six weeks’ worth of elation on the purchase of a few dozen eggs, eggs she’d avoided so she could heal from a disease she did not have. Could there more more children like her out there? I see tremendous traffic coming to the pages on my site dedicated to elimination diets, and my hope is that the people who need this information will keep coming here to find it. If, however, you are reading this and feel uneasy about this diagnosis or any other — that it’s not quite right, that your child doesn’t quite have all the symptoms or that someone might be missing something just out of reach of the low-hanging fruit — do something about it. Get the second opinion. Ask for the test. Call the doctor again, and ask more questions.
We sat on the eggs, and while we were waiting, so was the real problem.