Doctors at a new Hope Avenue center have created a program to treat a condition they say is considered a medical mystery.
Children's Hospital Boston at Waltham opened a million-dollar pediatric pain rehabilitation center specializing in Reflex Sympathetic Dystrophy June 9. The center is staffed by eight employees including doctors, therapists and administrative coordinators.
The condition, characterized by intense body pain occurring without a reason, is usually diagnosed after an injury, but sometimes develops for unknown reasons, said Dr. David Leslie, a pediatric rheumatologist.
"It is a disorder that's still poorly understood but can affect children mainly in their lower extremities," he said. "With RSD, pain signals get turned on often through injury or sometimes through reasons we don't understand and they don't (turn off)."
Leslie said RSD causes parts of the body to feel pain when touched. The body parts may also become purple or cold, he said. The condition, which is eight times more common in girls than in boys, often limits a patient's ability to move freely, he said.
"Over the past 15 years, 900 children have been diagnosed with this disorder (at Children's Hospital)," Leslie said. "I think the need (for the center) is clear."
Hospital officials say the center is the most comprehensive stand-alone day hospital program of its kind in the country. The center offers multidisciplinary rehabilitation to children and adolescents who have not responded to traditional outpatient treatments.
"This is a program for kids who have failed other treatment options," Leslie said. "Hopefully, this is their last and best hope (of being treated successfully)."
Four teenage girls from across the country have been chosen as the first patients to receive treatment.
Three girls were recommended by colleagues of Leslie and Dr. Charles Berde, chief of the facility, Leslie said. One was chosen after her parents wrote to the hospital's Web site inquiring about treatment options. The girls range in age from 15 to 18.
Of the four, three arrived in wheelchairs earlier this month. After 2 1/2 weeks, two are now able to run again, according to the center's staff.
Patients receive occupational, psychological and physical therapy sessions both alone and in groups. The sessions last three weeks at the minimum and can go longer depending on each patient's needs. The center also contracts tutors who help patients maintain academic studies.
A typical day, which begins at about 8:30 a.m. and ends at roughly 4:30 p.m., involves a variety of intense physical activities, from running on a treadmill to swimming against a current in a specially designed pool. The aim is to improve strength and circulation. Group activities in the evening are more creative and are intended to forge a bond among patients. Scavenger hunts, water balloon wars, and Wiffle ball games make up a few of the organized sessions.
"We try to be as creative as we can," said Judy Gaughan, the center's clinical coordinator. "Our two physical therapists, they make it fun to move and that's a unique talent."
Physical therapists Katie Olson and Melinda Hogan coach the girls through a wide variety of physical activities.
"There are certain tasks we have them repeat," Hogan said. "You focus on doing the task and then focus on improving the task ... we sort of alter their tasks to make them harder."
Center psychologist Laura Simons said suffering from constant pain also tends to have long-lasting mental effects.
"Generally they don't have a specific psychological disorder," said Simons. "What happens is the pain takes over their lives and limits them. Here they learn new strategies for overcoming pain and getting back to doing the things they want to do."
"Diseases like RSD are rare and kids affected by them often feel like they are all alone," Leslie added. "They often feel like people don't believe them. When they come to (the center) they know we believe."
Patients are being admitted on a first-come, first-served basis and are subject to an evaluation. New patients will be admitted in the coming weeks. Old patients will then be discharged with instructions to adhere to a strict therapy regimen.
Jeff Gilbride can be reached at 781-398-8005 or jgilbrid@cnc.com
