Category Archives: eoe

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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Terrible Conversation, Part I

At the end of June, 2010, our daughter, Sammi, was diagnosed with an inflammatory disorder called Eosinophilic Esophagitis. Her esophagus was coated in several places with the white blood cells called eosinophils, making it look something like eczema inside. These cells — these eosinophils, a word we had to practice saying, slowly — were poorly understood by even the experts on the disorder. Common knowledge at the time of her diagnosis was that they are the result of a protein intolerance.

Something Sammi was eating was making her body attack her esophagus. It could be more than one thing. It could be lots of things.

We were given two options for treating it. One was to begin treating her esophagus with what was known as a steroid slurry. The ampules of liquid steroid that were usually plugged into an asthma nebulizer would be cracked open, spilled into a dish in our kitchen and mixed with ten packets of splenda, the non-calorie sweetener. She’d then swallow this slurry twice a day, thirty minutes before eating. The steroid, mixed with the splenda, would coat the esophagus and act as a topical steroid paste, bringing down the inflammation in her esophagus. No one knew what the long-term effects of swallowing steroids would be, but they were 98% effective at resolving the symptoms of the disorder.

The other option was much more intensive, expensive, and time consuming, and it might not work. It was known as SFED — the Six Food Elimination Diet. Current thinking about eosinophilic esophagitis is that the most common triggers for the disease are the top six most common allergens: eggs, soy, nuts, fish, wheat, and dairy. Beginning by eliminating all of those foods from the diet for six weeks, and then adding each food back in, one at a time, with an endoscopy in between each one, this protocol would isolate the offending food or foods. For 80% or more of children, this worked to find the culprit or culprits, which could then be eliminated permanently from that child’s diet, leaving the child to lead an otherwise normal life.

We chose the diet.tomato

And then we had to tell her.

It is difficult to describe what those days were like before we launched into this plan, which we decided would be a family diet whenever the four of us were together. We read the packet mailed to us by the doctors’ office, explaining all of the things that would have to be removed from her diet. It was an exhausting list. Not only could she not have any of the “six foods,” but she could not have any products which had been made on shared equipment with any of those things. We were already vegetarians, and the doctor didn’t want us to add meat into her diet if it hadn’t been there before. What was left?

We made a list. I still have it, a yellow legal pad scribbled furiously with all the things she could eat. The list was bizarre as it was lopsided, lots of fruits and vegetables, few proteins. Lots of strange grains, few familiar foods. Once we had covered both sides of a piece of paper, we sat our children down one day on the kitchen floor to try to explain to them what was coming.

They were eight and not-quite-five. Being forced to stay calm for them, to focus on the positive, was the only reason I didn’t fall to pieces. We explained that we had good news; we now knew why Sammi’s food kept coming back into her mouth. Her esophagus was sick! We drew a body on paper, showed them where the esophagus was, drew a frown on it. We talked about allergies, about our friend’s daughter with celiac disease, about feeling crummy and then feeling better. We brought out the list of allowed foods and cheered along as favorites were listed.

Blueberries! YAY!

Tortilla chips! WOO HOO!

Black beans! Avocado! Peaches! Tomatoes!

We made Sammi promise not to eat food given to her by anyone but us. We made Ronni promise to keep an eye out for her sister. We made a chart listing all the new foods we were going to try, giving everyone a vote for each one (yuck, eh, not bad, great). We hugged them tight, and they went off to play.

I wanted to cry. I didn’t. I rolled my sleeves up, pulled out my cookbooks, and got to work. This diet, in one form or another, would last a full year, and it would take everything I had. There wasn’t time to stop and weep.

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Chivalry

The stories I tell about my daughter — and about my experience as her mother — feel as if they belong mostly to me. For so many reasons, I’ve turned out to be the person who’s handled the majority of her health issues, a role that feels as anachronistic as it does unchangeable. I’ve written very little about Sammi’s sister, Ronni, and perhaps even less about her father, David, except in first-person-plural, the other party implied whenever I write that “we” worried.

When we found out that Sammi’s aorta was the problem, it was a total shock — so shocking, in fact, that David had not come with me to the hospital that day. He’d been visiting his grandmother, who had pneumonia, and as a precaution against spreading it, he’d stayed away from the children’s hospital. My friend Cathy came with me that day. It was Cathy who sat next to me in the consultation room as the doctor explained what a double aortic arch was, and Cathy who looked me in the eye and told me it would be ok. It was Cathy who held Sammi as I called David at work and told him to get out a pen and start taking notes. It was Cathy who stepped outside with me and my woozy baby into the bright, mocking sunlight and steered me toward lunch, breathing, and reason. She was irreplaceable — exactly the presence I needed.

I remember not wanting to tell David, wishing I could give him another day without knowing what was about to happen. Nearly four years later, he had the chance to do that for me, and he did.

***

Every summer since Sammi was two, I’ve gone away for one weekend to the Indiana Fiddlers’ Gathering, a musical festival for traditional string music in a park over the grounds of the Tippecanoe battleground. As an old-time fiddler myself, it’s an opportunity to be immersed in the music I love, to feel the air on my skin in a way that mothers don’t often feel with young children at home. It’s my get-out-of-parenting-free weekend, once a year.

A week before the Fiddlers’ Gathering in 2010, when Sammi was four, she had her first endoscopy. The brusque and busy doctor had emerged from the operating room after the procedure with a glossy page of photographs of Sammi’s esophagus.

“See here?,” she said, pointing to a shiny spot in the photo, “This is something I sent out for biopsy. It could be yeast — that sometimes happens when the kids take these reflux drugs for so long — but it could be something else. We’ll let you know when we get the results.”

David and I squinted at the photo, “What could it be?” I asked.

“Well,” she said, a step away already, “there’s a chance it could be this thing we’re seeing nowadays called allergic esophagitis. It’s a big deal. Let’s hope it’s not that.”

“What do you do about that?,” I asked as she walked another step or two away.

“There’s a complicated diet. Sometimes they can give you some drugs. We have a specialist for it in our practice. Hopefully it’s just yeast.” By the time she finished talking, she had already turned her back to us and was walking away. A nurse walked us to the recovery room to sit with Sammi as she woke up.

For days, I listened for the phone call. My hand was on my cell phone, my ears prickling with the vigilance. On Friday, when I left for the fiddle festival, I told David to get in touch with me if the doctor called with results.

I phoned him on Saturday from my tent, asking “Did the doctor call?”

There was a pause. “No,” he said. “Sorry. Not yet.”

The weekend was soul-enriching, as I knew it would be. I arrived home Sunday, dirty and happy, unloading tents and camping equipment and my fiddle from the car. His mother was there for the afternoon, playing with the kids. David asked me to come up to our room. He closed the door. He said we needed to talk.

“The doctor called on Friday,” he said. “I didn’t want to ruin your weekend.”

Sammi had been diagnosed with eosinophilic esophagitis. It is, we would come to learn, a black-and-white disease: you have it or you don’t. The diagnosis is lifestyle-altering, unclear, prognosis poor, and ambiguously treated.

It was the end of our little world as we were coming to know it. David delayed that end for me by 48 hours. In the days that followed — frantic, drowning days — I knew that he had sat with that knowledge alone, no one to talk to, for two nights.

That was the most gallant, valiant, and noble thing anyone will ever do for me.

If I mention him very little in our story, it is partially because in just that weekend, he did enough for me to treasure him for many years to come.

everything

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