Packard Children's Care Teams Train Brain to Defeat Pain
Nov 5, 2013 - 9:49:10 AM
It turns out Cameron was entering the mysterious world of complex regional pain syndrome, or CRPS - an often-sudden condition in which the brain registers severe, unremitting pain from a limb, even when no injury or trauma is apparent.
CRPS is difficult to diagnose and tough to treat, especially in children.
"We don't know exactly what causes it," said Elliot Krane, MD, director of the Pediatric Pain Management Program at Lucile Packard Children's Hospital and professor of anesthesia at the School of Medicine. "However, it's likely the result of nerve impulses in the spinal cord and brain that are misinterpreted as pain in what should be a normal limb."
That's why Cameron came to Packard Children's, home to the largest and most successful pediatric pain management program in California. In collaboration with the hospital's Pediatric Pain Rehabilitation Center, Cameron was successfully treated with a get-your-life-back protocol that has worked for hundreds of kids visiting the program from throughout the United States.
At first, her doctors thought the pain could be stemming from inflammation of the tendons in the heel. But walking boots and crutches were not fixing the problem. So she was referred to specialists at Packard Children's. "By the time we saw Cameron in April, she was definitely starting to show signs of complex regional pain syndrome," said Brenda Golianu, MD, associate professor of anesthesia at the School of Medicine. As it often the case, the cause of Cameron's CRPS was a mystery.
"Previously, her leg was being immobilized through conventional solutions, and this wasn't helping," Golianu said. She said that what Cameron needed was active therapy. Cameron underwent several weeks of outpatient physical and occupational therapy, as well as intensive psychological therapy with Samantha Huestis, PhD.
"But by July, we determined her improvement was limited and she needed something more intensive to get her life back," Golianu said.
Despite several months of incredible pain, Cameron stayed focused on recovery. "I was kind of scared," she said, "but I did not want to be like this the rest of my life. I tried to be confident every day and persevere.
At Packard's Pediatric Pain Rehabilitation Center, Cameron was treated five days a week, eight hours a day. Intense? Yes. "Each day included several hours of physical, occupational and aquatic therapy," said Sarah Niswonger, an occupational therapist, who noted that at first Cameron could not put her foot in the water because of pain from the sensation. Additionally, there were psychological counseling and family therapy sessions, plus lots of work on distraction techniques.
The team's goal was to desensitize the limb experiencing CRPS, which would rewire the misfired nerve signals being sent to the brain. "We make this happen by retraining the brain and working through the things that are causing pain," Niswonger said. For Cameron, this included gradually walking on grass, standing on the foot and other activities that would encourage the process of recalibrating the nerves.
Then, a big day. On Aug. 14, Cameron and Niswonger took a four-block walk to a local market, a trek that a few weeks earlier seemed impossible. "That was huge," said Roxanne, the girl's mother.
Cameron's perseverance had paid off, and the desensitization worked so well that she completed the 12-week program in five weeks and held a graduation party Aug. 16. Her complex regional pain syndrome is now in remission, and she's returning to sports. Looking back at the painful journey, mom saluted her daughter and an experienced care team that made family life normal again.
"They said Cameron would eventually walk out of there wearing shoes and socks again," recalled Roxanne, who bought Cameron some new Nikes for the occasion. "They were right."
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