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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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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All the Fruit

raspberriesIn the winter of 2006, when our youngest daughter Sammi was just over a year old, our neighbors invited us to their Christmas Eve party. We knew they’d always had a huge gathering of friends and family, and so that afternoon, we arranged to have a huge and elaborate fruit bouquet delivered. Later that evening, when our host greeted us, he said his young grandson had been staring longingly at it all day.

“Fruit is his favorite thing,” he said. “We wouldn’t let him have any until the party started. When the first people rang the bell, he raced for the fruit!”

I remember very clearly thinking that this little boy had been raised right. If fruit was his favorite food, then he had chosen it over sweets, chips, and other junk. I secretly had always admired people like that — people who really preferred healthier food. Those people would have an uncomplicated relationship with their favorite foods; those people would be lucky.

In a few short months, however, I would learn what it meant when a child preferred fruit over everything else, and sometimes to the exclusion of everything else. Sammi’s love affair with blueberries wasn’t exclusive — it was part of a larger issue with swallowing anything that wasn’t wet and cold, even though we didn’t know it until she was much older. From her early years of eating blueberries soaked in cream or drenched in warmed coconut oil, to the infuriating meals where we made her eat some calorie-dense dessert before she was allowed to have her beloved bowl of raspberries, to the months of restricted diets during which I would be grateful that she saw fruit as a delicious treat, I would spend the next years wishing I’d never had a jealous thought about that neighbor’s grandson and his love of fruit.

Practically, there were benefits to this pickiness. Had she preferred candy or pork rinds or something generally considered to be “junk,” we would have let her have it anyway, desperate as we always were to get calories in her body however we could. On her last day of preschool — which coincided with the first week of her intensive elimination diet for eosinophilic esophagitis — I took her to pick out some treats to share with her friends. The only candies available at that time that had no dairy, egg, soy, nuts, or wheat — and were not prepared on the same equipment as those things — were DumDums and Smarties. I let her get a bag of each.

“All that sugar isn’t good for a girl her age,” an old lady spat at us as we walked past her toward the register.

I didn’t say anything. Anything I could say would be too long and too ugly to say in front of Sammi.

But fruit! Well, fruit was never questioned. When she brought raspberries for her kindergarten class for snack — fifteen dollars worth of raspberries because that’s how much it costs to feed raspberries to twenty kids — I received nothing but praise. When her snacks at camp were bowls of strawberries and grapes I had to prepare at home because I didn’t know what would be on the cutting boards and colanders of other people, I was hailed as brilliant for convincing my child to like fruit. When she ran squealing to the farmer’s market stand every week to choose anything she wanted, people smiled with approval.

A cup of raspberries is 65 calories.

A cup of Cheezit crackers is 312 calories.

When you are trying to grow a child — to grow her brain, to grow her skinny legs and her sunken eyes and her ribs you can see and the top of her sweet head, which is a foot below the heads of her friends, the choice of raspberries seems less saintly.

Picky eaters are usually the ones at which that the world points a judgmental finger and whispers, how can that child’s mom let her eat only chicken nuggets and sliced apples every night? or I can’t believe he will only eat bagels and cream cheese for lunch — isn’t this the fourth year of that? Picky eaters are sometimes fat, sometimes skinny, sometimes indulged, sometimes not — but no one noticed my picky eater’s choices as picky because they were so universally held up as healthy. Meanwhile, she was anemic, underweight, failing to thrive, and, as it turns out, struggling to swallow.

We all love fruit in this house: berries, grapes, melon, stone fruits, apples, pears, all of it. But now, after years of my mother teasing me in my youth about not liking fruit and calling it “the F word,” and then years of my daughter’s childhood using fruit as a bribe to eat one more cookie, one more bite of pizza, one more slice of cheese, my relationship with fruit is complicated.

And who ever says that?

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