This Children’s Specialized Hospital article is sponsored by RWJBarnabas Health.
When Leah Guerrini first came to Children’s Specialized Hospital in 2014, she was in a wheelchair. With her severe chronic pain preventing her from walking, she feared she may never get better. Her parents, Dawn and Darren, were also experiencing the same feelings of helplessness.
Leah has a condition called Reflex Neurovascular Dystrophy (RND), also known as complex regional pain syndrome. The condition produces excruciating, chronic pain throughout a person’s body. Luckily, the Inpatient Chronic Pain Management Program at Children’s Specialized Hospital treats RND.
After completing the four week program which employs a multidisciplinary model to increase function, decrease pain and sensitivity, and promote the use of adaptive coping skills, Leah gained the ability to walk on her own.
Identifying Chronic Pain
“It saved her,” Dawn said, referring to the program. “It gave Leah her life back.”
The Inpatient Chronic Pain Management Program at Children’s Specialized Hospital in New Brunswick, NJ treats children between the ages of 11 and 21 who have a diagnosis of chronic pain. This includes RND, amplified musculoskeletal pain syndrome (AMPS), fibromyalgia, chronic headaches, chronic abdominal pain and more. According to Dr. Katherine Bentley, Director of the Inpatient Chronic Pain Management Program, there are many causes of chronic pain syndromes. These include injuries, illnesses, psychological stressors or unknown causes.
“Most of these children are very debilitated when they come in,” said Dr. Bentley. “And they’re not functioning in their environment as they should be.”
In most cases, chronic pain cannot be eliminated, but it can be reduced. The goal of the program is to ensure each patient learns to cope with their pain and can become functional.
Treating Chronic Pain
“I always tell my patients that as a young person, your job is to go to school,” Dr. Bentley said. “So the goal is to get them to the point where they’re functioning enough to get up in the morning and go to school, join in after-school and community activities, and become an participating member of their household again.”
Depending on each individual patient’s needs, the Inpatient Chronic Pain Management Program usually lasts about four weeks. The program offers in-house tutoring and nutritional counseling as well as community outings to provide the skills needed to return home. While each child’s treatment plan fits their specific needs, the program usually involves a combination of aquatherapy (moving in the swimming pool), physical therapy, occupational therapy, recreational therapy, psychological counseling, family and group therapy, and mindfulness and meditation.
“It’s unique because it’s an inpatient program,” Dr. Bentley said. “Being inpatient allows for continual treatment of the pain and development of function. These kids are working incredibly hard for 10 hours a day, seven days a week for a month straight to obtain their new normal which is hopefully a life of reduced pain and less flare-ups.”
Personalized Treatment Plans
Most of the patients have tried taking pain medication, but according to Dr. Bentley, pain medications are usually not helpful for kids with a chronic pain diagnosis. Therefore, part of the patient’s treatment plan includes weaning them off of any pain medications they may be on. It’s also important to teach them other techniques to manage their pain including meditation, yoga and exercise.
Every child leaves the program with a set of coping mechanisms. They also receive a home exercise plan, which is developed by the primary therapist and patient together. The program empowers each patient to do the hard work that is necessary to live a more fulfilling life.
“The staff at Children’s Specialized Hospital pushes you really hard,” said Leah. “And it may feel like you can’t do it and you’re never going to get better, but you can do it. You just have to work with them and follow the treatment plans and it will get easier and you will get better.”
The Inpatient Chronic Pain Management Program is offered at PSE&G Children’s Specialized Hospital in New Brunswick, NJ, while the outpatient chronic pain program is offered at 13 Children’s Specialized Hospital locations across the state of New Jersey. For more information about these programs, visit childrens-specialized.org.