The Worst Terrible Advice

papersThis is the best era yet for the acquisition of information. No matter the strangeness of your request, a search engine can turn up something. In the years between my medically complicated child’s birth and her diagnosis with a rare inflammatory disorder, the internet became a phenomenal resource for medical information. The first thing I did after being handed the name for the condition — eosinophilic esophagitis — was to plug it, syllable by syllable, into a search engine.

This is a dangerous endeavor. There are multiple copies of the clinical information: the diagnostic criteria, the available treatments, the symptoms — and then there are the support groups and forums. I knew from previous small forays into research of her first diagnosis, cardiac in nature, that the people posting on the bulletin boards are largely the ones in desperate need of something. They need either sympathetic ears, advice from those more experienced, or recommendations for next steps when the first treatments have failed. The success stories — those who have tried a treatment, succeeded, and gone on with their lives — are not well-represented on disease forums. They don’t need anything. They have moved on, the disease or the procedure well into their past. Holding this perspective is crucial for the newly-diagnosed. For the most part, only those troubled by the issue remain on those forums.

That left one final category of search engine results: the foundations and non-profits.

For nearly every rare disease, a family foundation or group of patient families or medical research team has formed a charity. Funding research for cancer is relatively easy compared to funding research for something that affects only a tiny portion of the general population. These foundations are, literally, saving lives through hard volunteer work, fundraising, and advocacy. It was through one of these non-profits that I had my only one-on-one interaction with a parent of a child with eosinophilic esophagitis.

It was completely terrifying.

After posting on a Facebook group for the families of children with this disease, a parent heavily involved in one such foundation offered, via private message, to talk with me on the phone. I was struggling greatly with meal planning and also unable to see what life would be like for us in the long term. I was thrilled to be able to speak with someone in real time.

I explained to her, when she called, that my daughter had oddly not exhibited any of the typical symptoms of this disease except for the reflux-like sounds. She wasn’t vomiting regularly — in fact, she had never vomited — and though she was very small, she was not disproportionately thin. She didn’t have any food allergies. She didn’t have eczema. Maybe, I suggested, she would be one of the 90% of children for whom the culprit was just one or two foods that, once removed from her diet, would put the disease into remission.

I can still remember exactly where I sat in my dining room, cookbooks and menus and lists spread around me, when this woman said to me, “I wouldn’t count on that.”

I was surprised. She went on, “That 90% statistic is really exaggerated. Most of the kids I see in working with this non-profit start out that way, but eventually it gets worse. They lose more and more foods as they get older. Eventually they all end up on the formula.”

The formula she was describing is an elemental amino-acid based drink that provides nutrition for patients who can eat only a limited number of foods, a formula which tastes so vile that many of them choose to have it pumped directly into their stomachs through a gastromy tube. She described her own daughter’s path from diagnosis to her current diet, which was composed exclusively of the formula and five other foods, only one of them a protein. She spoke about the extremity of the path in which her daughter had carefully and scientifically added each food over years, a process which included many foods which “failed” the tests when they made her daughter sick. “This is how it goes,” she said. “I just don’t want you to get excited. That’s what happens to these kids.

I asked her how her family functioned in these circumstances. Holidays? Family dinners? Travel?

“I eat a sandwich over the kitchen sink most nights,” she said, “so she doesn’t have to smell it.”

As far as I knew in that moment, she was describing my future. I knew doctors didn’t always listen to patients. Who should I believe? The mother of a patient with the disease who was also a leader in a non-profit dedicated to research, or a doctor who saw hundreds of these children in his practice? When that call ended, I had to leave my mess of papers and notes and walk quickly a few blocks to retrieve my daughters from day camp. I was shaking. How many more months would my life — already drastically changed by this new diet the doctor prescribed, eliminating dairy, egg, soy, nuts, wheat, and fish from our already-vegetarian diet — be able to include a family dinner? How many more afternoons at the farmers’ market, eating cherries in the sun, were left for us?

Later, I would learn that the woman to whom I spoke had a daughter with a far more severe case of this disease than most and, as such, had sought support and company from others in a similar situation. I would find, as the years went by, that my instinct was, as usual, correct; my daughter would pass food trials and never need that formula. When the standard treatment protocol works, the patients don’t often feel driven to form and work for disease-specific foundations.

But that day, I didn’t know that. That day, she shook the hope out of me.

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