STANFORD, Calif--

Dr. Elliot Krane

The words ‘chronic pain’ shouldn’t be part of any child’s vocabulary. But twelve-year-old Elana Hunter knows all about it. In 2005, this formerly active Bay Area girl noticed an inexplicable tenderness in her left wrist. The pain rapidly escalated during the next few days, making tiny arm movements excruciating and even causing the surrounding skin to turn grey and peel.
 
Elana is an example of the 10 to 20 children each year who are treated at Lucile Packard Children's Hospital at Stanford for complex regional pain syndrome, or CRPS — a mystifying condition in which the brain registers severe, unrelenting pain in an affected limb without any obvious physiological cause. CRPS is difficult to diagnose and even harder to treat — particularly in children. Weeks of intensive therapy at Packard Children’s, coupled with strong family support, helped to resolve Elana’s wrist pain and allowed her to take up the trumpet. Not everyone is as fortunate.
 
“It’s very frustrating,” said Packard Children’s anesthesiologist Elliot Krane, MD, who directs the hospital’s pediatric pain management clinic and is a professor at the Stanford University School of Medicine. “It’s horrible for a child to have chronic pain, but we can’t always help them as much as we’d like. Some kids do extremely well with treatment, but some remain resistant to our best medications and therapies.”
 
That should change soon. On May 30 and 31, Krane and Packard Children’s will host the first-ever conference to allow pediatric CRPS experts from across the nation to share ideas and talk shop. “We need to get everyone together in one room and discover our common ground,” said Krane. “We can find out what works and what doesn’t; what we know and what we need to know.”
 
The disorder often starts with a seemingly trivial injury that appears to heal normally but is followed by severe, persistent burning pain in the affected limb that can last for years. Although it’s not known what causes CRPS, physicians agree that it’s likely the result of abnormal nerve impulses in the brain that are interpreted as pain in the now-normal limb. Knowing what to do about it is another matter.
 
“It’s like we’re reinventing the wheel every time we see a new patient,” said Krane of the many different, multidisciplinary approaches to treatment. “And every practitioner has his or her own idea of what works and what doesn’t work.” 
 
During the conference, anesthesiologists, psychologists, rheumatologists, adolescent medicine specialists, and neurologists from Children’s Hospital Boston; Harvard Medical School; Johns Hopkins University; University of California, San Francisco; Chicago Memorial Children's Hospital; University of California, Los Angeles; Seattle Children’s Hospital; Duke University; Children’s Hospital of Philadelphia; and other institutions will join forces to discuss how best to evaluate and treat children with CRPS. The aim is to generate a consensus statement to guide treatment of kids around the country and to marshal their forces to conduct multi-center clinical trials to test new therapies. Pooling resources in such a manner will allow the researchers to conduct studies with much greater statistical power than if patients from only one institution were included.
 
Although it may seem to outsiders like just another conference, the outcome is tremendously important to children like Elana, who recently struggled with and overcame another CPRS episode, this time in her foot. But she’s not letting it get her down. While she and her family wait for a permanent cure, she remains active in school, playing in the band and participating in track and soccer.
 
The conference is supported by Barbara and Phil Endliss, the Mayday Fund, and the Kimball Endowment for Pediatric Pain Management at Lucile Packard Children’s Hospital.

Note to media: The Juvenile/Adolescent Complex Regional Pain Syndrome Consensus Conference will take place on the Stanford University campus on May 30 and 31. Reporters interested in attending the conference to meet the experts and learn more about the condition should contact Packard Children’s Media Relations Manager Robert Dicks at 650-497-8364 or email rdicks@lpch.org.

About Lucile Packard Children’s Hospital
Ranked as one of the best pediatric hospitals in the nation by U.S.News & World Report and Child magazine, Lucile Packard Children's Hospital at Stanford is a 264-bed hospital devoted to the care of children and expectant mothers. Providing pediatric and obstetric medical and surgical services and associated with the Stanford University School of Medicine, Packard Children's offers patients locally, regionally and nationally the full range of health care programs and services - from preventive and routine care to the diagnosis and treatment of serious illness and injury. For more information, visit http://www.lpch.org.