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 âThe Wizard of Ozâ to Maria in âWest Side Story.â
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 Childrenâs Mercy Hospital.
While tests showed treatment had eliminated the blood clot, Auroraâs pain didnât 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 childâs 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 Auroraâs 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 treatmentsâfrom antiseizure medications, strong pain prescriptions and physical therapy to topical creams and even anesthetic injections in her neck. Still, the straight-A studentâs pain intensified. She lost functional use of her arm, unable to raise it even to shoulder-height, and she couldnât sleep due to the intense tenderness and aching. Despite the variety of treatments, Lucy said, âNothing made the slightest difference.â
Then, Auroraâs condition worsened. âShe started having a lot of pain on the same side of her body, in her trunk and her leg. She wasnât limping yet, but she was definitely favoring that leg.â
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 Childrenâs 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 Childrenâs Mercyâs 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.
âIt was an incredibly challenging, demanding program,â Lucy said. âThey really work these kids. They made them swim, bear crawl, climb stairs ⊠Itâs eight hours of intense physical therapy, along with yoga, art therapy, swimming and counseling.â
The result of Auroraâs dedication to the programâs demands was astonishing. Her discomfort began to gradually subside. Twelve weeks after âgraduationâ from RAPS, she was completely pain-free. âShe had no more swelling and full mobility,â her mother said. âHer life returned to her.â
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. âShe knows how to listen to her body now,â her mother explained.
Lucy credits her daughterâs 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 programâs director of behavioral health. âThe program is just so, so hard, but they are so supportiveâand Aurora just loved that,â Lucy explained. âThey really cared about her as a person and about her long-term recovery,â Auroraâs mother addedâaspects any parent can truly appreciate.