Top left: Laura Simons, PhD, David Leslie, MD, and Penny Sullivan, PT, PCS
Bottom left: Katie Olson, PT, MSPT, Charles Berde, MD, PhD, and Judy Gaughan, RN
This summer, Children's Hospital Boston will open the Mayo Family Pediatric Pain Rehabilitation Center (PPRC) at Children's Hospital Boston in Waltham. The PPRC will primarily treat children with complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy (RSD), a nerve-based pain disorder
associated with hypersensitivity to touch along with circulatory changes, including coldness, skin discoloration and swelling of the affected limb(s).
Patients will spend eight hours a day in intensive rehabilitation provided by a team of physicians, psychologists and physical and occupational therapists.
This will make the PPRC the most
comprehensive, stand-alone day hospital program of its kind in the United States, offering intensive, multidisciplinary rehabilitation to children and adolescents ages 7 to 18 who have not responded to traditional outpatient treatment for CRPS/RSD. The PPRC is jointly sponsored by the Division of Pain Medicine in the Department of Anesthesiology, Perioperative and Pain Medicine; the Division of Rheumatology; the Division of Psychology; and the Department of Physical and Occupational Therapy.
"For children and adolescents with this condition, there is strong evidence for effectiveness of a treatment program that combines intensive physical therapy with cognitive-behavioral therapy," says Charles Berde, MD, PhD, chief of Pain Medicine
at Children's and executive director of
the PPRC. Dr. Berde has worked for
more than 22 years in pediatric pain
management at Children's. "We think of a partial hospital model such as the PPRC as a contemporary and cost-effective model of care," he says. "It can provide much greater intensity of treatment than
outpatient care, but at a lower cost than standard tertiary hospital inpatient care."
Children with CRPS/RSD develop a vicious cycle in which pain leads them to stop moving their arm or leg, and the lack of movement produces more pain and more dysfunction and disability, according to Michelina Cassella Kulak, PT, director of the Department of Physical and Occupational Therapy. "CRPS/RSD is a unique
condition because you have to find a way to help the patient relearn the use of their painful limb, and getting them to move that limb is the key to treatment," she says. "This involves retraining the brain along with retraining the limb." On-site staffing of physical therapy services for the PPRC is provided
primarily by Melinda Hogan, PT, and Katie Olson, PT, MSPT.
Deirdre Logan, PhD, clinical assistant in Psychology and director of Psychological Services for Pain Medicine and the PPRC, says the goal of the center is to restore children to normal functioning while managing their pain. "A lot of these kids become 'functioning disabled' by the pain," she says. "They're not able to participate in normal activities, like going to school or playing. Our purpose is to take kids who have been living in pain for a long time
and get them functioning. One route to restoring functioning is to help them learn to self-manage pain and increase activity by changing how they think about pain
and teaching them to use behavioral
tools. In a lot of cases, once they're
functioning again, we also start to see some reduction in pain." On-site staffing
of psychological services for the PPRC is provided primarily by Laura Simons, PhD, and Gloria Chiang, PhD.
As a component of helping children return to normal functioning, the center
will offer patients one hour per day of
academic instruction provided by an
outside tutoring company, Education, Inc. "With tutoring, they don't fall behind in school work, which can be a tremendous added stress to these children," says
Judy Gaughan, RN, clinical coordinator of the PPRC.
Unlike some other pediatric hospitals' pain rehabilitation programs, the PPRC will have a large psychology and biobehavioral therapy component. "It's wonderful to offer children treatment that allows them to go home and be with their families at night, practice their functioning skills and gain support from their families,"
says David Leslie, MD, on-site clinical director. Along with Dr. Leslie, additional on-site physician coverage will be provided by Dr. Berde and by Alyssa Lebel, MD, senior associate in Pain Medicine and Neurology, Navil Sethna, MB, ChB, senior associate in Perioperative Anesthesia and Pain Medicine, and Susan Sager, MD, senior associate in Perioperative Anesthesia and Pain Medicine.
There's also a research component to the program. David Borsook, MD, and Lino Becerra, PhD, are neuroscience researchers jointly appointed at Children's, McLean Hospital and Massachusetts General Hospital. Along with Dr. Lebel and others, they are investigating the effect of CRPS on child and adolescent brains using functional magnetic resonance imaging (fMRI). "Pain is unique in kids," says Dr. Borsook. "We're exploring how the brain changes or adapts, both when pain persists and when pain resolves." Like the PPRC, the pain imaging fMRI research program has received funding from the Mayo Family.
Schedule an evaluation: 617-355-8930
More information: 781-216-1650