Mysterious Pain Syndrome in Kids Can Be Beat, Thanks to Lucile Packard Children’s Hospital Stanford

For Release: September 25, 2013

PALO ALTO, Calif. - This past January, 13-year-old Cameron Bozdog of Atherton, Calif., was happy and active with running, swimming and soccer. Then, her left heel started hurting. Not just any old hurt, but a hurt that eventually became so bad that she couldn’t even put a sock on.

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 Stanford Medicine Children’s Health and professor of anesthesiology at the Stanford 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.”

At first, her doctors thought it could be an inflammation of the tendons in the heel. But, walking boots and crutches were not fixing the problem, and so she was referred to specialists at Stanford Medicine Children’s Health. “By the time we saw Cameron in April,” said Brenda Golianu, MD, “she was definitely starting to show signs of complex regional pain syndrome.” As it often the case, the exact stress igniting the CRPS was a mystery.

“Previously, her leg was being immobilized through conventional solutions and this wasn’t helping,” explained Golianu, who is also an associate professor of anesthesiology at the School of Medicine. Golianu said that what Cameron really needed was active therapy, leading to several weeks of outpatient physical and occupational therapy, as well as intensive psychological therapy with Samantha Huestis, PhD. “But by July,” said Golianu, “we determined her improvement was limited and she needed something more intensive to get her life back.” “It was clear that for Cameron an even more aggressive multidisciplinary solution was needed,” Krane said.

In the meantime, despite several months of incredible pain, Cameron stayed focused on recovery. “I was kind of scared,” said Cameron, “but I did not want to be like this the rest of my life. I tried to be confident every day and persevere.” At the 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, OT, 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,” said Niswonger, “and working through the things that are causing pain.” 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 mom Roxanne.

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 on Aug. 16. Her complex regional pain syndrome is now in remission and a return to sports is under way. Looking back at the painful journey, mom saluted her daughter and an experienced 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.”

Links:

• Elliot Krane, MD, discusses the complexities associated with treating CRPS in this TED talk, and shares information on how nerves work in this TED Ed talk.
• Find out more about the Pediatric Pain Management Program at Stanford Medicine Children’s Health here.

Authors

Robert Dicks
650-497-8364
rdicks@stanfordchildrens.org