The Long Haul: Life With an Eosinophilic Disorder and a Race to Raise Awareness

Riley is 3 years old, with giant blue eyes and a joyful smile. Like many little girls, she loves princesses. Riley’s parents speak in earnest about her boundless energy and her cooperative, loving demeanor. She dances and does gymnastics, gives ample hugs and kisses, and is normal in most every way. What she can’t do, however, is eat food the way other children can.

Riley has a medical condition called Eosinophilic Gastroenteritis, which means she is severely allergic to almost every kind of food. It is a rare condition; so rare, in fact, that it took over a year of extreme physical and emotional strain on Riley and her parents before she was diagnosed.

And that is precisely the problem.

Although diagnosis of the disease has grown rapidly in the last ten years, perhaps because of increased medical knowledge, much awareness is still lacking, according to the American Partnership For Eosinophilic Disorders, a non-profit organization.

In response, Riley’s friends and family are hosting a benefit run to raise awareness and research funds for the organization.

If you had met Riley during the first year of her life, you would have met a very different girl from the one she is today.

“When she was born, the first 15 months of her life were confusing and frustrating,” explains Riley’s father, Mike Kahn. She was miserable a majority of the time, would scream for hours and sleep very little. She had trouble gaining weight, and was clingy, irritable and clearly in pain.

Doctors kept diagnosing it as common GI issues, like reflux, and said she would grow out of it.

“It’s ingrained in my mind, sitting in the doctor’s office, and we’re just beat up emotionally, and the doctor saying, ‘You guys just gotta stick with it, this is difficult, but it’s going to go away.’ My wife and I just looked at each other, wondering if we were crazy,” Kahn says.

Doctors were confident things would improve when Riley could sit up, but they didn’t. They said once she could walk, things would be different. Then she walked, and things still weren’t any different.

Feedings continued to be a losing battle.

Riley’s mother, Jill Kahn, describes the first five months spent nursing Riley as a complicated struggle.

“I would be in the nursery trying to feed her almost all day long, and after a two-hour feed, she would projectile vomit it all up and be totally inconsolable,” she says.

The doctors told her to keep trying.

“They didn’t know she was allergic to everything I was feeding her, even though I cut my diet all the way down to just sweet potatoes and turkey. I was almost starving myself to find what was causing the problem, and we were getting nowhere,” Jill says.

The Kahns knew that something was not right.

“When you’re a new parent, you kind of think that everyone else knows the answers better than you, especially when you’re talking to doctors; but the confusing part was thinking it just feels like something else was going on,” Mike says.

He says they felt like they weren’t being listened to, so Jill began to do more research. When Riley was 17 months old, a scope was finally done to determine what was really going on. The procedure involves sending a camera down the child’s esophagus, while at the same time taking a tissue sample for biopsy.

What the doctor saw worried him. There were white rings of extreme irritation on Riley’s esophagus and lesions on her intestines. The Kahns feared what, in their mind, was the worst – the idea that Riley might be allergic to gluten.

“I remember thinking ‘How can you live without wheat, that’s going to be incredibly difficult,” Mike said. After the biopsy was sent to California to be tested, the conclusion was far more troubling.

Riley’s condition comes in various forms and severities, explains Julie Springer, national fundraising coordinator for the non-profit organization APFED.

Riley’s Run”The problem with this disease is that it’s very individualized. Some people have it very minor, some have it very severe,” she says. She adds that about one in 1,000 to 2,000 people have the condition, and although it is on the rise, people often have trouble locating a doctor who will diagnose or who can treat it because of its rarity.

Once they had the answer, Riley’s parents had to look at ways to manage the disease.

“We went from thinking we were going to have to cut out wheat, to having to cut out everything,” Jill says. They had to switch entirely to a formula food for Riley.

However, the formula also posed challenges – it tastes and smells terrible, Mike explains. With that factor, as well as the early full feeling people with the condition experience, it was a challenge to get Riley to eat enough of the formula to meet her required nutrient levels.

They tried everything, even attempting to feed her while she was asleep, which could only happen in the car. But that wasn’t enough. They then fed her through a nose tube because they were initially terrified of committing to a stomach tube for Riley.

“Everyone thinks, ‘It cant be our child,” Mike says.

For a child, the nose tube is more uncomfortable, and, as you can imagine, difficult to manage. Jill adds that she had to reinsert it once while at a restaurant.

It wasn’t until they had a second scope done and saw how the formula had allowed Riley’s intestinal irritation to clear up, as well as seeing the complete shift in her personality, that they knew this was a long-term issue and that a stomach tube would be the best way to go.

“Once we got her diagnosed and stopped feeding her things that were hurting her inside, she was a totally different child,” Jill says.

“We saw the light in her eyes that’s there today. She’s happy and growing. Before, we thought we could never use a feeding tube, but then we saw the change in her. It’s just our life now, it’s not so crazy and abnormal, because the benefits have just been unbelievable,” added Jill.

Still, the management of Riley’s condition has to be worked down to a science, Mike explains. He attributes an iPhone app to helping schedule eight to ten different medicines for her. She has a Mic-Key button in her stomach that allows a feeding tube to pump the formula from a small backpack four times a day and during the night.

Mike emphasizes that social activities must be altered, as well – Riley is unable to eat the birthday cake and pizza at other children’s birthday parties; and when they go out to eat, they give her a plate of Sonic® ice, which keeps Riley from forgetting how to eat.

“We’ve been to Sonic at least four times a week for the past two years,” Mike laughs. In addition to the ice, Riley has three safe foods she can eat – sweet potatoes, carrots and a certain kind of potato chip. The difficulty in testing new safe foods is that a bad reaction can set her back for weeks. However, the process should get easier as Riley gets older, Jill explains.

She compares the continuous care Riley requires as similar to that of a newborn child, but overall, they make sure Riley leads as normal a life as possible.

Mike echoes this sentiment, and explains that the idea of the race was somewhat difficult because they knew they would have to talk a lot about Riley’s condition.

“We’re not ones to complain about this issue at all,” he says. “We’ve dealt with it and made the best of it. It’s not going to define us, it’s not going to define her, we’re going to try to live a normal life and be grateful for everything that we have, even if it’s just three foods.”

It was the importance of awareness of the condition that made them act. Mike explains that more awareness means more research, which could lead to a cure, or at least better treatment options.

Springer agrees to the value of events like Riley’s Run in raising awareness about the condition.

Riley’s RunThe 5k race, which was organized by Mary Catherine Sexton, a Kahn family friend, will be held at Oakdale School in Edmond on June 16. Along with inflatables, princesses and activities for children, there will be a 1-mile fun run and sleep-in (non-run) option.

Such a run seems appropriate for a little girl like Riley, who has been triumphing in her own race since she was born.

– Lindsay Whelchel (source: Distinctly Oklahoma Magazine)