Looking for trouble…

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“Stop being so clinical.” I hear that a lot, from my husband nonetheless. Of course, since he is not a physician himself, he appreciates it more when I call in eye drops for our kid’s conjunctivitis (on vacation in North Carolina) or save him from hours in an ER waiting room for something I can treat. Even before my own kids were diagnosed with celiac disease or diabetes, people would ask me, “Are you more paranoid about your own children’s health?” For the most part, I think that I am pretty relaxed. However, I do worry about things that non-pediatrician moms wouldn’t even know about.

“Why look for trouble?” That’s another line I hear often. Intellectual curiosity is central to the practice of medicine. “Medical Student Syndrome” refers to the hypochondria that occurs when 2nd year medical students study pathology and begin to worry that any symptoms they are having are part of some esoteric disease, like those seen on an episode of House. Once, when I returned from spring break with a stomach illness caused by a parasite, the student health clinic worked me up for an immunodeficiency that could be related to it! Of course, there wasn’t one. But, you get my point.

As a physician, hearing a potential diagnosis about a loved one can send your mind to dark places where it loses objectivity. You quickly work out a differential diagnosis, you try to stay positive, but you won’t stop worrying about the worst case scenario.

So, how does this curiosity translate to parenthood? We still laugh about the time I called my favorite pediatric ophthalmologist because my son was not tracking my finger or smiling enough for a 9 week old. The doctor reassured me that this did not mean he was blind. My middle son, Ben, cried so much from colic and reflux that we had him sleep in a car seat in his crib for the first 5 months of his life! His legs were so stiff from his constant crying that I brought him to a neurologist to evaluate his tone and reassure me that this would improve over time. I needed to hear that it wasn’t a neurological problem!

A few months before my oldest son Sam’s 5 year annual checkup, I noticed his belly protruded more after meals; he was small and he sometimes complained about belly pain. At a recent conference I had learned that celiac disease can manifest in many different ways. I never really thought Sam had it. I just felt compelled to make sure he didn’t. I needed to get the bug out of my head. We waited until his checkup and then asked his doctor to send the lab work for celiac titers along with the routine tests. He agreed begrudgingly after joking “only because you are a pediatrician-I really doubt he has it but I’ll send it.” Sam’s celiac markers were off the chart and a small intestinal biopsy confirmed that he did indeed have celiac disease. Further testing showed that Ben had it as well.

Celiac disease is an autoimmune disorder characterized by gluten intolerance (reaction to wheat, barley, and rye). The impaired absorption leads to a wide range of symptoms and the development of other diseases. A gluten-free diet prevents these but it requires strict, lifelong adherence.

Sure enough, this diagnosis sent me into a tailspin. What began as an academic question was now staring me in the face! Waves of panic washed over me. Although I wasn’t hysterical, I struggled to wrap my brain around our new reality. I was 6 months pregnant at the time. Six years ago, the available gluten-free (GF) foods were unpalatable and exorbitantly expensive. I was working full time and I hadn’t scheduled in the new food shopping, cooking, and baking from scratch. And who wants to learn that your 2 kids have a medical condition when you are pregnant with your third? This was an unwelcome surprise.

How does a doctor react to a new diagnosis involving her own child? For me, the hardest part was the chronicity. Kids are resilient, that is our mantra. Childhood illnesses and traumas are scary but usually transient. The celiac diagnosis was life-long, and therefore, life-altering. This meant strict compliance of a GF lifestyle in order to prevent a host of medical problems. It was a tough one to swallow. It was the end of spontaneity. Back to the diaper bag. Welcome to birthday party HELL.

The clinical part of me faded quickly. The celiac question had been asked and, unfortunately, answered. What remained was the familiar maternal challenge of keeping my children happy and healthy to the best of my abilities. It was parenting, and it just got a little tougher.