Grace: Family's every meal must cater to rare disorder - Omaha.com
Published Monday, March 25, 2013 at 12:30 am / Updated at 9:25 am
Eosinophilic esophagitis
Grace: Family's every meal must cater to rare disorder

The next time you dread cooking dinner, matching what's in your pantry with what your fickle kids will eat, think about Taco Night. Think about an Omaha family whose kids are so sick with a rare gastrointestinal disorder that they can't stomach — literally — most foods, least of all tacos.

Lizzie Aurit, age 6, can have seven real foods. Her brother, J.P., age 10, can have 15. Gianna is lucky. The 8-year-old can tolerate 26. But few of the foods they can eat are the same ones.

This makes Taco Night at the Aurit home resemble nothing you've ever seen — but we'll get to that later.

Mostly what the Aurit kids consume is not food at all. It is amino acids mixed up in a lab and called “formula.” It smells and tastes like vomit. It is served powdered or premixed and artificially flavored (think orange sherbet-cardboard smoothie).

Gianna is able to suck it down. J.P. and Elizabeth take the foul stuff through feeding tubes implanted in their abdomens.

The formula is so necessary. And so awful.

And so expensive that an insurance company once advised Scott Aurit, a civil engineer, to divorce Sarah to qualify for government aid to pay an estimated $3,000 monthly formula tab. The cost and confusing insurance rules have driven the Aurits and other Nebraska families to lobby for change. They are asking the state to force insurance companies to help pay.

The Aurit children are on the severe end of what is a newly discovered gastrointestinal disorder called eosinophilic esophagitis.

Translated: A body's white blood cells, which normally fight infection, see food proteins as parasites and attack them. Symptoms can resemble the flu or food allergies, with severe vomiting, diarrhea, abdominal pain and insomnia.

These and other similarly affected kids — 1 in 2,000, by current estimates — can't sleep. They get weak and they don't grow.

Most cases are treatable with diets that remove the usual suspects: dairy, eggs, nuts, soy, wheat and fish.

Some children take steroids.

The hardest cases require elemental formula. This amino-acid diet is stripped of proteins and helps a body achieve a baseline at which parents can experiment with real foods to see which trigger reactions and which do not.

J.P. was sick from birth with severe insomnia and diarrhea. By age 1 he was projectile vomiting all the time. By age 2 he was diagnosed and given steroids. His weight continued to drop. Over four years, he dropped from the 90th percentile in weight to the 25th. He was so weak he could not run across the yard.

It wasn't until he was 4 that doctors at Cincinnati Children's Hospital, which specializes in these disorders, found a treatment that worked: the elemental formula.

For more than a year, J.P.'s parents got him to drink the formula — by rewarding him with Legos.

But eventually they ran out of Lego sets, and J.P. ran out of tolerance. The Aurits finally consented to implant a feeding tube — it permanently alters your stomach — on the advice of a child psychologist.

By this time, Gianna was 2 and Elizabeth was a baby. No one ever said this rare disease would potentially affect the other kids.

So when Gianna showed reactions to some foods, Sarah chalked it up to food allergies and pulled offenders such as milk, eggs and peanuts out of her diet. But Lizzie was another story. She was sick much of her first year.

When Lizzie turned 1, the Aurits pressed to get endoscopies for both girls. Both tested positive for eosinophilic esophagitis, or EoE for short.

A recent study points to increased sibling risk when one child has been diagnosed.

Sarah, who had experienced similar though less severe reactions to food herself, asked for the same procedure. She, too, was diagnosed with EoE.

“We were pretty devastated,” she said.

Paying thousands a month for treatment was daunting. Insurance costs and rules were confusing.

The diagnoses had snowballed just before Christmas in 2007.

The Aurits took back every Christmas present they had bought and cut out church tithing and any extra expense. They feared the cost would force them to ration formula, saving it for the sickest child and not distributing it as needed.

This was one reason they and other Nebraska families are trying to get the Legislature to pass a bill that would mandate insurance coverage. The bill, tabled this year for more study, may come up again.

The argument: Most with the disease don't need the formula. The few who do can generally stop taking it after three years. Families say insurers could lower the formula cost with their bulk-buying power. Insurers could save money down the road, the families argue, by avoiding costly and otherwise preventable procedures that are typically covered. Like having a feeding tube implanted. Like trips to the emergency room.

Fourteen states mandate insurance coverage of this medical formula. Nine, including Nebraska, are considering similar legislation. Iowa isn't among these states.

Insurance companies oppose the bill, saying mandated coverage would drive up premium costs.

Blue Cross Blue Shield of Nebraska, speaking also for Coventry and UnitedHealthcare, said it is opposed because “any state-mandated coverage such as this creates more services that health insurers are required to cover.”

The Aurits know families that have gone bankrupt or sold their homes to pay for this formula.

The Aurits got lucky. After facing the initial $1,000-a-month cost to feed their eldest, Scott eventually was able to obtain coverage, for now, through his employer.

The coverage pays for Gianna's $600-a-month oral formula. The state and federal government pick up the $2,400 cost of formula for the two children who have feeding tubes.

This is a distinction that makes no sense to the Aurits. Why should it matter for payment whether the same formula goes down a throat or in a tube?

Here's how it matters in lifestyle.

The Aurits hope eventually to wean all three children off formula. But doing so would require finding enough foods they can tolerate that offer the necessary nutrition.

SARAH AURIT

This is a cat-and-mouse game in which Sarah, an engineer by training, tries to see what foods her children can eat.

This requires incredible observation, creative cooking and regular trips to Cincinnati Children's, where the children undergo endoscopies to see whether the trial foods are causing any tissue damage.

Sarah tracks it all by spreadsheet.

Here's how it works: The Aurits try three different foods for each child for a three-month period. Some foods might trigger an instant negative reaction and are crossed off the list. Others might be harmful, but it takes the invasive endoscopy procedure to tell.

For instance, no one knew that rice was making Lizzie sick until the scope revealed it made her bleed inside.

It takes a discerning pathologist and Sarah's meticulous notes to see whether Lizzie can have corn (she can) or rice (she can't).

All the diet rules make special occasions challenging.

At classroom parties, the Aurit kids rarely get to eat the treats from room mothers. So Sarah keeps treats, such as chocolate lollipops — miraculously, the kids can tolerate chocolate, though only a specialized kind — at school so they don't go without.

At Halloween, the Aurits let the kids go trick-or-treating. The only candy they seem to tolerate beyond pure chocolate, though, is Smarties and Dum-Dums suckers, so Scott and Sarah “buy” the rest of the candy back, and the kids can go toy shopping.

But J.P. went to first Communion without being able to take communion.

The family takes its own meals to family gatherings.

Scott and Sarah strive to normalize the kids' experience. Sarah spends a lot of time meal-planning, which brings us to Taco Night.

Start with the tortilla.

Only Scott can eat regular store-bought. Sarah's is a funky, gluten-free kind with the consistency of plastic.

SCOTT AURIT

She makes tortillas for Gianna and J.P. using white rice flour, salt and oil. It's hard to roll, and the kids don't like it. But she fries up the tortillas anyway to simulate a normal dinner.

Next: the filling. It's butcher-ground pork, seasoned only with salt and none of the savory flavors like cumin and chili powder that make tacos taste like tacos.

Gianna, who has the most food tolerance, can have pinto or black beans.

She and J.P. also have rice and a little lettuce. But no cheese, no sour cream, no salsa, no tomatoes.

And Lizzie, who can't have any of it? Her Taco Night is plain corn pasta or a baked potato.

Formula feeds are staggered. Gianna has three formula “juice boxes” throughout the day.

J.P. get a dose in his feeding tube an hour before dinner. He and Lizzie are on a formula drip all night.

Sometimes the feeding tube gets clogged, causing the alarms they wear to sound. Sarah and the school nurse at the Elkhorn Public Schools' Fire Ridge Elementary, where all three children attend, are pros at unclogging the tubes and getting the drip going.

As you can imagine, the Aurits don't do restaurants — with the rare exception of Wendy's, where the kids can enjoy this treat: a plain baked potato.

Give Sarah credit for ingenuity.

She makes pizza with a crust made of potato and rice flour, topped with a tomato-salt-sugar-oil paste.

She's made chocolate cupcakes for Gianna's birthday using a Depression-era recipe that offers substitutions for limited ingredients like eggs.

When I asked her how she possibly could make cookies with no binding ingredient such as eggs or butter, she said: “Baking soda plus vinegar works well, mixed with rice milk or just water. I also add canola oil.”

Sarah packs the kids' lunches with special deli ham from a supplier in Iowa, Lay's potato chips and special cookies she makes with oatmeal flour and chocolate chips.

“Probably the biggest thing we miss would be bread,” Sarah said. “I can't figure out how to make it with the ingredients we have.”

Their diligence might pay off if they succeed in dumping the formula.

Right now, they want to make sure other families don't face some of the same punishing quandaries — like rationing formula.

She and Scott also limit what they eat around the kids because it feels so unfair. Her voice breaks with emotion.

“It's so instinctive to get your children to eat,” she said, “to help them develop and grow.”

Contact the writer: 402-444-1136, erin.grace@owh.com, twitter.com/ErinGraceOWH

Contact the writer: Erin Grace

erin.grace@owh.com    |   402-444-1136    |  

Erin is a columnist who tries to find interesting stories and get them into the paper. She's drawn to the idea that everyday life offers something extraordinary.

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