Living in Pain and Living in Peace
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Living in Pain and Living in Peace
Aurora Kuhn is skilled at pretending. The talented St. James Academy High School senior has pretended to be many people other than herself over the years, performing in a range of Kansas City-area musicals, from Dorothy in “The Wizard of Oz” to Maria in “West Side Story.”
But, two years ago, despite her talent for pretending, the then-15-year-old discovered one character she could not successfully pretend to be: herself, pain-free.
In March 2012, the Lenexa, Kan., teen underwent a medical procedure that required an IV in her arm. A month later, Aurora suddenly began to experience significant pain in that limb. A blood clot developed, and she was hospitalized for treatment at Children’s Mercy Hospital.
While tests showed treatment had eliminated the blood clot, Aurora’s pain didn’t lessen. In fact, it got worse. Hematologist Brian M. Wicklund, MDCM, MPH, director of the Coagulation Medicine Program, ordered more tests in an attempt to solve the puzzle.
Through a process of elimination, he diagnosed Aurora with complex regional pain syndrome, a complicated condition in which the child’s perception of pain is increased due to the abnormal firing of nerves that sense pain and control vascular tone (a condition of the blood vessels). Pain can be localized to one area of the body, generalized throughout and include other physical symptoms. As with Aurora’s blood clot, the condition can be triggered by prior injury, as well as illness or stress.
Desperate for Relief
Lucy took Aurora for treatment at the Pediatric Department of the University of Kansas Hospital. Medical staff there attempted a variety of treatments—from antiseizure medications, strong pain prescriptions and physical therapy to topical creams and even anesthetic injections in her neck. Still, the straight-A student’s pain intensified. She lost functional use of her arm, unable to raise it even to shoulder-height, and she couldn’t sleep due to the intense tenderness and aching. Despite the variety of treatments, Lucy said, “Nothing made the slightest difference.”
Then, Aurora’s condition worsened. “She started having a lot of pain on the same side of her body, in her trunk and her leg. She wasn’t limping yet, but she was definitely favoring that leg.”
Desperate, the family decided to take their daughter to the Mayo Clinic in Minnesota. They had heard about its Pain Rehabilitation Center and hoped its specialists could provide the relief their daughter needed. But, before they could make the trip, they learned that Children’s Mercy was opening the same type of specialized rehab program. They made an appointment with its director, Cara M. Hoffart, DO, who immediately recommended enrolling Aurora in Children’s Mercy’s Rehabilitation for Amplified Pain Syndromes (RAPS) Program.
Pushing Patients to the Edge of Recovery
RAPS is a multidisciplinary service that treats children with severe pain and disability and provides an effective solution when other options have failed. Treatment, which usually lasts three to four weeks, includes intense exercise and desensitization therapy guided by physical and occupational therapists, as well as stress management. Each aspect is critical in helping to break the pain cycle.
“It was an incredibly challenging, demanding program,” Lucy said. “They really work these kids. They made them swim, bear crawl, climb stairs … It’s eight hours of intense physical therapy, along with yoga, art therapy, swimming and counseling.”
The result of Aurora’s dedication to the program’s demands was astonishing. Her discomfort began to gradually subside. Twelve weeks after “graduation” from RAPS, she was completely pain-free. “She had no more swelling and full mobility,” her mother said. “Her life returned to her.”
In the year since, Aurora has continued to use the skills she learned in the RAPS Program. She knows how to relax and de-stress so that she can avoid potential pain triggers. “She knows how to listen to her body now,” her mother explained.
Lucy credits her daughter’s success in completing the program to the encouragement and caring dedication of the RAPS therapists, as well as Dr. Hoffart and Dustin P. Wallace, PhD, the program’s director of behavioral health. “The program is just so, so hard, but they are so supportive—and Aurora just loved that,” Lucy explained. “They really cared about her as a person and about her long-term recovery,” Aurora’s mother added—aspects any parent can truly appreciate.