Category Archives: ee

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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Summer and What to Do

summer chair at the lakeIt is summer here in the midwest, and like nearly every summer for the last nine years, I’m balancing conflicting impulses: to work as hard as I can in every moment my children’s schedules and propensity for all-day-tv-watching will allow, and to spend as much quality time as possible with my children while they still want to spend time with me.

We’ve had memorably difficult summers, of course, like the summer when Sammi, the sunshine of this blog’s title, began the first and most restrictive phase of her six-food-elimination-diet for eosinophilic esophagitis, and the summer after her aortopexy surgery, when I took her for feeding therapy every week. Those were sunny days with metaphorical thunderstorms always looming.

This summer, though, is as perfect a summer as I can imagine. Everyone is healthy. Both my daughters have just the right amount of independence and connection, and I am writing this from the window of a coffeeshop where Sammi left me on her way to day camp. She’ll pick me up later. I have a full slate of work, a hot latte, and not a single doctor appointment on our calendar for the foreseeable future. Continue Reading…

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Feeding Therapy in a Vacuum

cerealHere’s the crazy thing about taking my 8 year old daughter to feeding therapy: no one important really knew we were there.

There was a complex set of circumstances that brought Sammi to the cheerful basement office suite forty minutes from our house. Unaware of this were a host pediatric medical specialists: an office of gastroenterologists, a cardiothoracic surgeon, an otolaryngologist, an endocrinologist, and her general pediatrician. Though all of them examined her, declared her capable of eating, and recognized that she did not, in fact, eat well, not one of them had recommended feeding therapy.

They didn’t recommend it when, despite the compression on her esophagus having been surgically relieved possibly for the first time in her life, she failed to eat any meal in under an hour — including a simple bowl of cereal at breakfast. Continue Reading…

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Doctors Made Mistakes: Now What?

Please watch this, all 21 minutes of it:

This Ted Talk was produced in 2011. While Dr. Goldman was speaking eloquently and so bravely about his humanity as a physician, my daughter Sammi was in kindergarten. That is, she was in kindergarten when she wasn’t on an operating table or in the gastroenterology clinic at our local children’s hospital, being treated for eosinophilic esophagitis, a condition with which, we would learn three years later, she had been misdiagnosed.

Dr. Goldman’s talk gives me hope. My bitterness about the lost and wasted years we spent engaged in the fight against the wrong enemy has not resulted in a lawsuit, not because I am not furious and not because I am not heartbroken and not because I don’t believe we could win. We haven’t sued because Sammi’s doctors are human beings. Continue Reading…

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Unlearning the Body

chocoAfter six weeks on a fat-free diet and a week on a low-fat diet, my eight-year-old daughter Sammi was officially released from all her food restrictions by her cardiothoracic surgery team. Her chylothorax — a leak in the thoracic ducts that process fat — had completely healed.

The two of us had decided to spend the day together in downtown Chicago, starting with a visit to the Hershey Store. After all, it had been nearly two months since she’d had free rein to eat anything she wanted. I thought that surely she would gorge herself on candy while I watched gleefully.

Instead, she nibbled timidly and said, “I’m full for now.”

It was heartbreaking to realize that, as far as she’d come — years of false diagnosis with reflux, then eosinophilic esophagitis, then a revelation that her swallowing problems stemmed from a structural obstruction in her chest, culminating in major cardiac surgery — she still had more hurdles to jump. Of course we couldn’t undo eight years of her experience of eating in one day at the candy store. Why had I been so naive? Continue Reading…

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