Sitting on Eggs: A Missed Diagnosis

sammiegg

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? Continue Reading…

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Your Strange Diet, Day One

There are hundreds of articles on the internet and in parenting and health magazines about what it’s like to deal with food allergies. From the relatively minor challenges of mild lactose intolerance to the devastating effects of an anaphylactic reaction, there’s advice on avoidance and labeling, special medical alert bracelets and school safety plans. There are lists of substitutions for these newly dangerous foods, recipes for making things “(fill-in-the-blank) free,” and products popping up on shelves to replace the foods you used to love before they became a danger to you or someone you love.

kitchen cabinetIt’s easy to find those articles. What I felt was missing was an article to help families in those first few days. The day after a child is first raced to the emergency room with a swelling throat, or after the gastroenterologist hands over the celiac diagnosis, or after an oncologist tells someone to follow an anti-cancer diet, they stand in their kitchens and stare down their former life  — and their kitchen cabinets — without knowing what to do first.  Continue Reading…

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Unexpected Miracles in Unpleasant Places

gfchallahA through line — sometimes faint, and mostly cultural — in my journey of being a wife and mother has always been my identity as a Jewish woman. Like so many people in my generation, I was dropped unceremoniously at the door of the religious school three days a week, twice for Hebrew lessons that were little more than decoding an unfamiliar alphabet, and once for the study of Jewish laws and history. I sat through many Friday night Sabbath services enthralled with the voices of our choir and of our cantor, a deep bass whose lowest notes made me imagine the voice of G-d. I went to three days of services on the High Holy Days, had a Bat Mitzvah in which I chanted a Haftorah portion that I’d never seen translated into English. I knew which foods went with which holidays: challah with the sabbath, apples and honey and mandelbrot with Rosh Hashanah, matzo ball soup with Passover.

It was all a ritual and surface-level observance. What held me to it was my mother and father, and their parents, and the parents before them, the long tail of history and the other-ness that held us together. “In the end,” I was told over and over, “you’ll be seen as a Jew no matter what you do.” Of course, that was a reaction to the recent history of the Holocaust, but I took it at face value, as least as it applied to the wider world’s opinion.

As a young adult, I fell in love with and married a Jewish man whose connection to Judaism had been stronger than mine, but brutally interrupted when his father died far too young and far too suddenly. He believed in having a Jewish home, but neither of us paid particular attention to the particulars of that. Before we had children, it was still the faith of our parents.

Becoming a mother forced me to decide how to reconnect to this faith in a way that would mean more to my children than whatever the Hebrew lessons and matzo balls had come to mean to me. Rather than a religion of their parents, I wanted my children to see themselves as Jews of whatever type moved them.

And then Sammi, my younger daughter, was born with a host of medical issues that took years to unravel. For many holidays during the years when her health changed our entire family’s diet, the connection of faith and ritual to food became tenuous. How do we define the sabbath without a challah? For that matter, how do we define a challah? According to Jewish law, a challah to be used for religious purposes has to be made of wheat, barley, spelt, oat or rye. What, then, of my gluten-free challah during Sammi’s six-food-elimination diet?

Was that challah Jewish? As I grappled with why this was the path my little girl’s health had taken, was I more than a mother pantomiming faith for her children? Continue Reading…

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6 Things Not to Say to a Family on a Medically Restrictive Diet

talkingBetween my daughter Sammi’s birth and her ninth birthday, she spent nearly all of her life on some kind of medically-restrictive diet. Whether it was being forbidden to eat grains as a baby, following an acid-free diet as a refluxing toddler, using the six-food-elimination diet to uncover the cause of her (incorrectly-diagnosed) eosinophilic esophagitis as a little girl, or choking down the unpleasant fat-free food that kept her safe from chylothorax after her cardiac surgery, we often had to define what our whole family ate by the things that Sammi had to avoid.

During all those years, I heard a number of unhelpful comments about what I fed my child, ranging from the well-meaning but insensitive to the downright offensive. If someone in your world is eating a diet that their doctor has prescribed, the following comments should never, ever come out of your mouth. Continue Reading…

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Sister in the Periphery

girlsThe story of a sick little girl is compelling. The story that spans across years of doctors and procedures, melting into each other in a pool of brackish gloom, punctuated by moments of glittery hope — that’s good reading, right there. You want to know: did she get better? did they figure out what was wrong? how did it all turn out?

That’s the story I’ve been telling about our family, and it’s true. It has driven every other decision in our life, in one way or another, for as long as our younger daughter, Sammi, has been a force on this earth. Figuring out how to keep her healthy, to help her breathe, to feed her and manage her doctors’ appointments and procedures and surgeries, to hold my own head up and make it through my own fears each day: these are the things that dictated the way we navigated the world.

But there is another story in the periphery. We have another child.

I don’t write much about my older daughter Ronni largely because she is now thirteen. She deserves the right to decide what information about her goes public, and so I’ve refrained from sharing her experience so far until now. Until yesterday. Continue Reading…

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