All kids get stomachaches from time to time, but 14-year-old Joey Sigrist’s pain was different.
When it would hit, he’d spend hours locked in the bathroom, clutching his stomach in agony.
“When you’re in that much pain, you just kind of take in the surroundings. I could hear a clock in a whole different room clicking away on the very back wall, and I could hear the shuffling of feet upstairs,” Joey said.
Joey would get agitated if his family made too much noise. His mom, Jeana, would try to shush her younger son so he wouldn’t disturb Joey.
“And so we had evenings in our house with almost no noise,” she said, her voice cracking. “Without boys being boys.”'
Not faking it
Nearly 20% of school-aged kids and teens have chronic abdominal pain, but adults don’t always take their pain seriously. That’s what happened to Joey.
“My fifth grade teacher thought that I was faking it,” Joey said. “I would go down to the nurse’s office and lie still on the couch, and one time she came in and told me that she knew I was faking it.”
She told him to cut it out and come back to class, but Joey was hurting so much he couldn’t respond.
Joey got sick at a stressful time for the Sigrists. They were homeless, sleeping somewhere that didn’t even have a shower.
“What I struggle with is I didn’t believe at first myself either because we had a lot of stuff going on at home, and Joey was not particularly fond of school,” Jeana said. “When we did get him here, he could manage, but the anxiety level was rising in him, and then the pain got worse.”
And there really was something wrong with Joey – eosinophil, disease-fighting white blood cells, had started to attack even though there wasn’t an infection. It’s a rare condition, and it wasn’t until Joey was referred to Children’s Mercy that the Sigrists got any answers.
Jennifer Colombo, Joey’s pediatric gastroenterologist, said it isn’t easy to diagnose abdominal pain to begin with.
“It’s not as simple as you have a positive test for strep throat, we know what’s causing it, so we give you your one week of antibiotics and you’re better,” Colombo said.
First Colombo has to rule out the most common causes of belly pain in children – celiac, Crohn’s disease and cancer. Then she has to take into account all the other factors in the child’s life.
“So sometimes it does take time to really get to know that family, to really get to know that child, to sort of tease out all of the noise that contributes to pain,” Colombo said.
And that’s where Amanda Deacy comes in. Deacy is a pediatric psychologist who sees patients with Colombo. She said many of their patients have been told there isn’t anything wrong with them.
But chronic pain can actually change hormone levels, further stressing the body.
“They come to fear experiencing pain. Simply the thought of having pain and the fear of having pain can sometimes incite additional pain,” she said. “Our worries have a direct impact on physiology.”
Playing through the pain
Most gastroenterologists and psychologists don’t see patients together, but Deacy and Colombo prefer to. It helps families buy into a rehabilitation plan that’s as much about healing the mind as the gut.
“We ask kids to go to school when they have pain,” Deacy said. “We ask kids to go to soccer practice when they have pain.”
Deacy says she knows that’s counterintuitive, especially because most patients end up in the abdominal pain clinic because they haven’t been able to go to school in a while. Joey had missed more than 40 days, and he was anxious about going back when he was so far behind.
“The anxiety was causing more eosinophil to attack,” Jeana said. “Once Joey felt like he had teachers on his side who could understand what he was going through, it was just a calming sensation.”
Deacy helps patients return to school as their conditions allow it. She also helped Joey develop some of the coping skills he uses to manage stress.
“It was better for me to try to calm down, and it would reduce the pain,” Joey said.
Today Joey is doing much better. The Sigrists have a new house, and Joey's condition is controlled with medication, so he only missed a day of school last year.
Elle Moxley covers education for KCUR. You can reach her on Twitter @ellemoxley.