Arlington — For a small but growing number of parents, having a child who's a finicky eater would be a dream come true.
Rosemary Moriarty and Vicki Boughton hold their breath every time their young sons get hungry, because a rare digestive disorder could cause an allergic reaction that appears not on their skin, but in their esophagus.
"My son had his first reaction at nine months," Boughton said. Her son, Connor, is her youngest child, so from the day she and her husband brought him home from the hospital, something didn't seem right.
"At five months, I tried to introduce rice cereal," but he got very sick, she recalled. "From there, it spiraled out of control."
At nine months, Connor had his first serious reaction — an anaphylactic response to some food, which prompted doctors to run a series of tests to determine if he was allergic to any of the so-called "Big Eight" allergens (soy, dairy, wheat, peanuts, tree nuts, shellfish, seafood and eggs). It wasn't until a few months later, her family learned that her son has Eosinophilic Esophagitis, a rare but serious medical condition in which his body has an internal allergic reaction to foods, causing his esophagus to swell and close when he eats most foods.
Boughton read anything and everything she could find on the subject, but it was a narrow field of research at the time.
"Doctors wanted us to give him whole milk yogurt, and he had a fast reaction" to it, because he's allergic to dairy, Boughton said. "We had no Epi-pen at the time. We were totally unprepared."
Connor was a small child because he was getting so little nutrition, but the doctors were trying to find something he could eat. He was put on an elemental formula, a variety of which he still consumes now, 45 to 48 ounces each day.
"It smells terrible and tastes worse," she said.
In all, her son is allergic to just about any kind of food a child would be exposed to on a normal day. An upcoming school field trip to an apple orchard is a source of stress, because he's allergic to apples. He can eat turkey, chicken, sweet potatoes and some kinds of sugar, like marshmallows.
For his birthday, Connor's been treated to shaved ice in many varieties, none of which can include flavoring because those would likely cause a reaction, Boughton said.
He's even allergic to quinoa, an ancient grain and trendy superfood that's believed to be among the least allergenic foods known to humankind, she added. Any time his family wanted to try a new food, they'd have to call a doctor to schedule a gastrointestinal endoscopy to check his digestive tract to look for any signs of an allergic reaction.
To make matters worse, he's at an age now where he asks his two older sisters questions about what they eat, things like what does that taste like, Boughton said. "He realizes and he remembers" that foods can make him very sick, but he's curious.
"It's a steep learning curve," she admits. But it's one she's had to take quickly to keep her son safe.
It's a story Rosemary Moriarty knows all too well. Her oldest child, her son, Jack, was diagnosed with Eosinophilic Esophagitis in 2009 at the age of three and a half.
"It's an allergic condition that affects the digestive system" and essentially is "the mother of all food allergies," she said. "If he eats something, he won't have hives on his skin, but he'll get them on the inside."
Like Boughton, Moriarty and her husband largely had to do their own research to find out what was plaguing their son. They took Jack off nearly all foods and then slowly, gradually started reintroducing them to him, holding their breath to see if he'd have a reaction.
Like Boughton, Moriarty said doctors tried to downplay her concern when Jack was an infant. She's call up a doctor or take him to the emergency room because he was gagging on some food, "but what toddler doesn't gag?," she said. She knew it was more.
Understandably, Moriarty felt like her family was alone in this, dealing with a disease so rare insurance companies didn't have codes for treatment which made treating it very expensive. The National Institutes of Health consider it a rare disorder.
Through her searches, she came across Boughton, and the two became friends and started a support group, the Washington D.C. Area Eosinophilic Connection (WAEC), as a way to bring people together. Before long, there were about 100 families involved.
The group is hosting its annual 5K run/walk fundraiser on Sept. 28, at Bluemont Park in Arlington. It's a way for the families to get together in an environment where things aren't as food-centric as other events — "everything in our society is food-based," Moriarty said — to raise awareness and funds for the disorder.
The two moms admit their sons know they have to be careful when going to school. Moriarty says her son's school just initiated a new "no treats" policy, meaning he doesn't have to be left out of birthday or other special food celebrations, in response to the rising number of children diagnosed with food allergies in recent years.
Boughton said that policy isn't in place in her son's school, and she's been notified after the fact that Connor didn't have enough special foods when classmates were celebrating birthdays, like the day when three birthdays were marked.
They don't eat out at restaurants much because a dish prepared incorrectly, or with an unusual allergen could mean a trip to the emergency room. There's a lot of planning involved in all meal preparations.
There are only a handful of doctors who have heard of EE, or EOE, as it's known in these families. Luckily, a few are advisors to WAEC, like Ben Enav, a pediatric gastroenterologist and a member of the medical advisory panel of the American Partnership for Eosinophilic Disorders (APFED), the national organization that gets the proceeds from WAEC's efforts.
EOE has been known for about 20 years now, but roughly half of the limited field of research on the disorder has been conducted in the past three to five years, Enav said. It's a condition in its infancy stage, with more questions and unknowns than certainties, that affects an estimated 1 in 2,000.
Children are most commonly diagnosed with the disorder, but it can strike adults too, who might have a reaction to a food they've been eating all their lives, he said. Treatment involves not just a pediatrician and a gastroenterologist, but possibly a speech pathologist who can work with patients on feeding therapy.
Enav opened his own practice after starting a clinic specializing in conditions like EOE at Inova Fairfax, and in the past six months, more than 30 patients with the disorder have come through his doors. There were about 600 patients visiting him at the hospital, he said.
He's worked with both Moriarty and Boughton, and other specialists in the area send children who might have EOE to his practice.
There's no cure for EOE and no course of treatment that works for everyone, which is why Enav recommends a speech pathologist, and for patients to develop a good relationship with a gastroenterologist.
"Telling a parent they'll have to take their young child to get an endoscopy" is difficult, but it's a necessity with this disorder, he said. "In most cases, it's a routine procedure with little risk. But when you're dealing with an infant or toddler, and you have to put them under anesthesia, it sounds terrifying."