WASHINGTON, D.C. — Shortly after her 13th birthday, Dani Zimmerman started to feel pain in her fingertips that quickly spread to three of her limbs. The pain was excruciating, she said. Her doctors soon diagnosed her with Reflex Sympathetic Dystrophy, a nerve disorder characterized by chronic burning pain.
These days, about every six weeks, the now 14-year-old travels here with her mom from Wilmington, Del., to receive infusion treatments and care from a team of healthcare professionals at Children’s National Medical Center’s Pain Medicine Care Complex. Dani and her family have learned to integrate the pain management techniques taught at the Complex into everyday life, and the Children’s National team helps oversee and coordinate the numerous local physicians and therapists who provide Dani with day-to-day support.
One of those techniques involves video games.
The countless hours children and teens spend playing on video game consoles, computers or cell phones are often a distraction from homework, exercise or face-to-face interaction. But at Children’s National the distraction provided by these games is key to treating Dani and other young people suffering from chronic pain.
Wednesday, the Sheikh Zayed Institute for Pediatric Surgical Innovation at Children’s National, with the support of a single private donation, officially opened the Pain Medicine Care Complex. The Complex is among a handful of programs nationwide that focuses only on pain management for children of all ages. Dr. Sarah Rebstock, programs director at the Complex said that through this new initiative, we will see “pain medication practices for pediatrics [become] accessible all over the U.S. and world, treating patients with individualized medicine then using data to individualize care.”
The Complex uses cutting edge technology and tools to treat children with a range of chronic ailments, such as sickle cell disease, fibromyalgia and HIV. Therapy based on video games and electronic information-gathering help medical professionals measure short- and long-term patient progress, according to Children’s National. This approach helps kids overcome pain while allowing doctors to measure — and improve treatment of — pain.
Currently, hospitals and pediatrician offices across the country use a spectrum (happy to sad, one to 10 and so on) to measure a child’s pain level. With the Complex, Children’s National will be able to treat young people based on objective data about what kind of pain they are experiencing, and how severe it is, said Christy Baxter, clinical manager at the Complex.
The Complex’s “multi-sensory room” allows chronic pain patients to play interactive video games, specially designed for the Complex, that are meant to distract, but also serve to increase range of motion and patient’s strength, said Baxter. While patients play, physical therapists use proprietary software to gather data, measure and ultimately treat pain.
There may be lessons here for professionals in social service, recreational, or other organizations who may work with young people suffering from under-treated chronic pain, said Rebstock. She says that youth service workers should suggest families consider a pain medicine evaluation if the young person has been to many doctors, but continues to suffer pain beyond what would be expected from their disease. A child missing a significant amount of school or a parent in jeopardy of losing his or her job because of the child’s chronic pain are also signs an evaluation may be called for.
Youth service professionals can also use many of the Complex’s techniques when working with children suffering from chronic pain — explaining the practices first, and gaining the child’s trust and belief in the process, Rebstock said. Creating a non-threatening environment, using interactive video games, validating the child’s pain, listening to music as a relaxation technique or simply offering to help can all be beneficial. If the child has an Individualized Education Program or 504 Plan, the worker and educational professionals should consider how pain management techniques can be integrated into the school’s support system.
Now, for the first time in over a year, Dani is pain-free and able to hug her mom. “Pain medicine is one of the most undertreated medical areas, particularly in children’s medicine,” Rebstock said. The Complex hopes to change that by helping child patients, like Dani, overcome their pain through advanced technologies, a holistic approach and unique interactive techniques.
