Category Archives: eating

Delicious Compassion

Between the beginning of July and the end of September, 2010, our family ate a diet that was vegetarian, dairy-free, egg-free, soy-free, wheat-free, and nut-free. As part of the treatment protocol for eosinophilic esophagitis, the “six food elimination diet” was supposed to remove the worst potential allergens from my daughter Sammi’s system, hopefully healing her esophagus and giving us the chance to add the offenders back one at a time later until the real culprit was found. The full elimination portion of the diet was just plain awful.

While the rest of us could sneak off and have such luxuries as omelets and almonds and bagels, Sammi was living this diet 100% of the time. We did everything we could to make it palatable; we made elaborate fruit salads and learned to cook ridiculously complicated foods. We spent a lot of time at the farmer’s market, trying new produce. We went to the beach. Our friends and family circled the wagons and did what they could. In all of this, I can only really remember snapshots — the most powerful moments preserved in a visceral feeling of either dread or deep relief.

Snap. My friend Christine arriving at daycamp with her children and a pan of crispy rice treats made on parchment paper with gluten-free cereal. “I poured boiling water over my spatula,” she said. “And the pan was brand new, but I used parchment paper just in case.”

Snap. My mother-in-law coming to my house with four bags of groceries from her local health food store. She bustled in and told me, “I showed the owner the list of foods she couldn’t have and he spent an hour with me walking through the store. Read all these labels anyway, though, before you give them to her.”

Snap. All through the fall of her kindergarten year, Sammi’s best friend’s mom sent clementines or bananas when it was her turn to provide snack, knowing that those were the only things Sammi could eat that I didn’t send. “I could eat the same snack as everyone today, Mommy!”

cakeSnap. In the middle of all of it, Sammi turned five, and my sister-in-law, fresh from classes in cake decorating, came over to help me decorate the only thing I could use for a cake: crispy rice treats. Carefully, slowly, we referenced a photo of the backdrop on Sammi’s favorite tv show.

One of the strongest memories I have of that time, though, was the deep, deep compassion bestowed on us by an employee of the candy company Jelly Belly. As a special treat for our kids, their great-aunt had offered to take them on a tour of the Jelly Belly factory about an hour away from home. As luck would have it, Jelly Belly jellybeans are free of all the top eight allergens. I confirmed this on the phone before they left.

They had a wonderful time at Jelly Belly headquarters and came home with souvenirs and, unsurprisingly, mountains of jellybeans. It was a moment of normalcy in a totally abnormal summer. And then, I read the side of one of the bags of candy they’d eaten on the tour:

Produced on shared equipment with peanuts

I cannot overstate the panic I felt. Even though Sammi would not get sick from this, it meant that the previous four weeks of crazy diet had been in vain. This excursion fell nearly at the end of the first six-weeks of the diet, after which Sammi would have an endscopy and then be given permission to take a short break from restriction to go on a family trip we’d been planning for years. This cross-contamination debacle would force us to cancel that trip and start the six weeks of diet from zero.

I went into a tailspin, grasping at anything I could imagine. I called the Jelly Belly factory again, horrified and furious and devastated all at once. What happened after that is best described in this excerpt from the letter I sent to the Vice President of Marketing for Jelly Belly.

“…I made a frantic call to Jelly Belly to see if perhaps the bags had been mislabeled. Kit McCoy called me back right away and immediately set to work checking lot numbers, re-checking with the production facilities, and calling me several times that day to update me on her progress. While she did that, I steeled myself for the possibility that, because we may have contaminated my daughter’s system with peanuts, we would have to postpone her endoscopy and cancel a family vacation we had been planning for over a year. Our window of opportunity for making this decision was very narrow.

Imagine my relief when Kit contacted me that very day to give me the news that the bags of Jelly Bellies that my daughter had eaten were simply “old film” – the beans inside were produced without any offending allergens. Kit’s quick research saved us an additional month of restricted diet, the loss of our long-planned vacation, and tremendous heartache. She deserves your praise and any commendation you can give her!

I am sharing our story with allergy support groups, friends, and medical staff to praise your company’s consumer relations and commitment to quality and safety. We are so grateful. We will be eating Jelly Bellies – and insisting that family carefully read labels – forever!”

 

I don’t know anything about Kit McCoy. I don’t know if she understands what she did for us. I’ll say this: without Kit McCoy, and her compassion, we would have lost this moment, on our vacation three weeks later: cruise

And more than that, I would have lost time, faith, and so much energy on recreating what we’d done all over again. Kit McCoy, wherever you are: you gave us time. You gave us space. You gave us hope.

Thank you.

1000voices

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Summer Lunch, “Free”

For many mothers of school-aged children, suddenly having to create on-demand, in-the-moment lunches during the summer is a rude awakening after the school year’s relative ease in school-supplied lunch or the mindless morning drop of sandwich/chips/apple/cookie into the lunchbox. Because of the economic diversity of my town, I know that the added complication of having to stop a day in the middle to prepare a meal still pales in complexity to the added stress of not having anything with which to prepare that meal. Some 60% or more of the children in our neighborhood elementary school qualify for free or reduced-price school lunch. When the summer arrives, all of those parents lose a third of their child’s weekday allotment of sustenance.

I am extra aware of the heartbreak of this situation after the summer of my daughter Sammi’s diagnosis of eosinophilic esophagitis. To calm the raging white blood cells in her esophagus, a progressive elimination diet had been prescribed for her. From her already vegetarian diet, we had to remove dairy, soy, egg, nuts, and wheat, and any foods prepared on surfaces that touched those forbidden items. In early July of 2010, I pushed carts through the Whole Foods grocery store, then the local multi-ethnic grocery store, then a smaller health-food store, attempting to put together a palatable and nutritious set of meals for her and us, who would be journeying through it with her so she wouldn’t feel alone.

Here’s how it went: I picked up an item — say, a cracker, labeled “gluten free” and “vegan,” which covered the dairy, egg, and wheat portions of the restrictions. Scanning the ingredient list, I searched for the presence of nuts, quite a common replacement for wheat in many gluten-free products. Finding none, I read even more carefully for soy; since Sammi only had to avoid the protein and not the oil or starch, she could still eat a food that contained soy lecithin or soybean oil. In the first weeks, I would allow myself to get excited if my reading had lasted this long without finding an offender, only to be crushed when, at the end of the ingredient list, I found the poisonous statement that made me shove the box angrily back on the shelf: this product is produced on shared equipment with products containing dairy.

Or nuts.

Or egg.

The first week’s grocery excursions cost us over $400, which bought us such strange things as wide variety of gluten-free flours (chickpea, tapioca, brown rice), hemp milk, rice pasta, coconut yogurt. To their odd and unfamiliar ranks I discovered I could add some common, cheap, everyday items that fit our needs and, when I did, I nearly wept with joy despite their chemical makeup being nothing like our previous diet. Post Fruity Pebbles! Betty Crocker Fruit Snacks! Lays Stax Potato Chips! Even so, the price of the diet was staggering, both in direct cost for ingredients and in the time it me took to shop and cook.

One morning about a week into this overwhelming experiment, I found myself near tears trying to imagine a lunch that would be appetizing for my daughters and a child who ate with us three times a week while her mother was busy. Carefully, I spread sunflower seed butter on thin, dense slices of a strange brown bread that had met our criteria. I added fruit in the shape of a face. I spread potato chips — also fancy and unusual — around the edges.lunch

It was the best I could do. My children, having sat through the difficult conversations and understanding the expectations and the experimentation we’d all have to endure over the coming months, gamely picked up their lunch and gave it an exploratory nibble.

The visiting friend, however, was not nearly so accommodating. “Oh,” she said, looking at the plate with a sneer. “My mom should have told you. I only eat white bread.”

I wish I could write here that I was understanding. I wish I could write that I brought her into the kitchen and made her a PB&J on white bread. Unfortunately, there was no food in my kitchen that wasn’t safe for Sammi. I had spent an hour scheming and hoping to build that strange little plate. I lost my temper with that child, telling her she could eat it or go hungry, leaving my children to manage her disappointment and confusion. I walked out of the room, locked myself in the bathoom, and pressed my head into the tiled wall, panting with anger.

Now, years later, I regret my behavior largely because I realize one of the reasons that parent may have left her with us for the day was that she may have been one of those children left without school lunch — and as a result, perhaps without any lunch — in the summer. I think about our astronomical grocery bills during that phase of the diet and wonder what would happen to the children like her if they’d had Sammi’s diagnosis. What on earth would a parent on a limited income do with orders like the ones we were following? I shudder to think of it.

Sammi’s lunch was dairy-free, egg-free, nut-free, soy-free, and wheat-free, but it sure wasn’t cost-free.

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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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A New Person

fourIn late April of 2010, our four year old daughter Sammi was a real person.

She was round-faced and giggly, with big brown eyes that squinted up at us in the sunlight under her blondish brown fluffy hair. She sang as she played, totally aware of the things she needed to master before kindergarten in the fall. She practiced tying her shoes with her tongue sticking out, just as her father does when he concentrates. She took a kids’ acrobatics class at a local circus school, charming everyone with her huge smile and bulldog energy, half the size of the other four year olds and twice the personality. Her voice sounded like a sped-up record — high and squeaky.

She was the mascot of her older sister’s class at elementary school, and teachers who knew Sammi would be coming as a student in the fall would wink at her as she and I walked through the hallways to volunteer or to pick up her sister. Her preschool was less than two blocks from the elementary school, and I found myself in a rhythm I could finally count as lucky. This is a good life, I often thought to myself. Next year, it would be easy — both girls in one school. For five days a week, five and a half hours a day, I would have time utterly to myself to work, manage our home, and maybe even volunteer in their school.

It would have been perfect, except that Sammi was still unable to function without a proton pump inhibitor (PPI). Take away her reflux medicine, and the gagging and coughing increased dramatically. Even on it, she still made a funny sound several times a day, after which, if asked, she’d matter-of-factly describe the last food she’d eaten rising back into her mouth.

Her pediatrician laid down the law: at four-and-a-half, Sammi needed to see a gastroenterologist again. She shouldn’t have infant reflux anymore.

We called the practice associated with the big children’s hospital in our area and were assigned the one doctor whose name we’d heard before. The rumors weren’t flattering — she was described as cold, bordering on rude, and very dismissive of parent input. A friend had told us this doctor insisted, over the phone, that she mimic the sound of her daughter’s retching so that the doctor could determine if it was really retching and not something else. Still, we saw this visit as a formality, at most a chance to get a more appropriate prescription for Sammi. How much time would we really need to spend with this doctor, anyway?

Unfortunately, this doctor was unwilling to talk about medication. “She shouldn’t be on a PPI anymore,” she told us. “I need to scope her.”

Scope her. It sounded vaguely alien to me — like probe, maybe. What she meant was that Sammi would undergo an endoscopy, to take a look at her esophagus and see what was happening in there to cause so much reflux. While they were in there, Sammi’s old otolaryngologist — the same one who had diagnosed her strange cardiac anatomy more than three years earlier — would perform another bronchoscopy to see if her trachea had opened up further.

This would make the fifth time I’d stand at Sammi’s side in an operating room and sing to her until the anesthesia knocked her unconscious. It would have been the sixth if they’d let me in the cardiac theater before they repaired her aorta in 2006.

This time, though, Sammi was a person. She wasn’t a baby or a toddler. She was four, and she talked with me, and we planned to open a restaurant together one day called “Sammi’s Restaurant: It’s Free!” She held my hand while we walked in a circle from home to preschool to her sister’s elementary school and back. She was looking forward to turning five, when she’d be allowed both to chew gum and to go to kindergarten.

It was happening again. It was all happening again. And now it was happening to a new little friend.

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