Two months ago, Sandra Burillo Rojas, in an act of desperation, traveled with her 11-year-old daughter Lucia from their home in Mexico City to Boston Children’s Hospital.
After contracting a common coxsackie virus in September, Lucia hadn’t been able to walk without extreme pain or dizziness, which kept her home from school and meant she had to use a wheelchair. “We tried everything, painkillers, physical therapy, but nothing helped,” Rojas said.
Pain specialists at Boston Children’s recommended an outpatient pediatric pain rehabilitation center in Waltham that is affiliated with the hospital. There, Lucia would get intense therapy for nine hours a day to help her move through the pain to rebuild her endurance and slack muscles. She would also learn how to mentally manage the discomfort with relaxation techniques and psychological counseling.
After five weeks, Lucia was out of her wheelchair doing headstands. She was planning to go back to school after a ski vacation.
“It’s just been a wonderful experience,” Rojas said.
Over the past several years, more than 30 teaching hospitals nationwide have opened pediatric pain clinics that offer a variety of services to help children manage pain, including biofeedback training, acupuncture sessions, exercise facilities, and sleep specialists. The six-year-old Mayo Family Pediatric Pain Rehabilitation Center in Waltham, however, is one of only four programs in the country that offers an extensive outpatient program with therapists who focus on treating elusive pain conditions such as chronic migraines, fibromyalgia, or other pain syndromes that result after a virus or injury.
“Boston Children’s Hospital has led the way in terms of starting the first day-treatment program, but such programs are becoming more of a trend because they’re so badly needed,” said Dr. Lonnie Zeltzer, director of the children’s pain and comfort care program at Mattel Children’s Hospital UCLA, who has referred pediatric patients to the Waltham center.
Chronic pain without any explainable medical cause has been a growing and more widely recognized problem in children: One in five children ages 7 to 18 report that they have weekly headaches and at least 8 percent deal with regular abdominal pain. Fourteen percent say they deal with back pain, and 4 percent with musculoskeletal pain, according to a recent study published in the medical journal Pain.
Other research published last year in the journal Pediatrics found the number of children admitted to US children’s hospitals each year for chronic pain complaints rose from 143 in 2004 to 1,188 in 2010 — an increase of 831 percent. “Kids may be having more pain than in previous generations, but physicians are also more attentive to it and doing more about it,” said Dr. Navil Sethna, clinical director of the rehabilitation center in Waltham.
Each day at the Waltham facility begins with a team that includes a physician, physical therapist, psychologist, and occupational therapist meeting to discuss the progress of each of the five or six children in the program at one time and to tailor the treatment plan for the day. Most children participate for three weeks, but some for five or six weeks. The cost is steep: $2,700 per day, but insurance plans routinely cover the cost. Federal plans provided to the US military or federal employees do not.
During the eight hours a day spent at the outpatient facility, children go through a simulated school day, playing games as they would in a gym class, walking through a crowded hallway with their backpacks, and sitting in a study hall doing class work provided by teachers.
“We teach them how to handle any pain that comes from getting jostled in a hallway or gym class,” said Jenna Duckworth, an occupational therapist at the Waltham center. The children learn sensory-based coping strategies —
“The treatment goal is to maintain and regain function, not a complete alleviation of pain,” said Judy Gaughan, a nurse and clinical coordinator of the Waltham center. In fact, nearly 90 percent of children still have pain symptoms when they finish the program, but most report a gradual reduction in pain over subsequent months as they return to normal activities.
“I’m definitely in less pain than I was a year ago,” said Matan Friedman, a 16-year-old from Silver Spring, Md., who spent three weeks at the Waltham center last March. The honors student and varsity basketball player no longer misses school or sports activities due to headaches and disabling leg pain that followed a minor sports injury in 2013.
“I still get headaches every day but they’re usually mild and if they get bad, I do some stretches, eat a snack, or walk around in class until I feel better,” Friedman said.
Most pediatric pain rehabilitation centers help wean children off habit-forming drugs used to treat pain such as narcotics, muscle relaxants, and benzodiazepines.
“Physicians are becoming increasingly aware that throwing more heavy-duty painkillers and narcotics at kids often doesn’t resolve pain and comes with a host of other problems,” said Keith Slifer, a psychologist at the pediatric pain rehabilitation program at the Kennedy Krieger Institute in Baltimore. Side effects from these drugs such as drowsiness, nausea, diminished attention, and memory impairment all interfere with a child’s ability to perform schoolwork and athletic activities, Sethna added.
In a 2012 study published in the Clinical Journal of Pain, Sethna and his colleagues published data on 56 children treated during the Waltham program’s first year in 2008. They found that the children’s improvement in pain and function scores that were measured when they first left the program remained 10 months later. Nearly all were taking fewer prescription pain medications, usually a non-addictive preventive drug, and nearly one-third of the children needed no pain medications at all.
Some children, however, experience setbacks. Erin Haggerty, 17, was going through the Waltham program for a second time in December for excruciating back pain that kept her home from school after successfully participating in the program five years earlier for chronic foot and leg pain.
“She had years where she didn’t have pain,” said her mother, Andrea Haggerty, of Westford. “But this back pain has lasted a little over two years, and it spiraled out of control even with the therapy we tried.” The Waltham clinic, she added, is “miraculous” and the only program that has worked for her daughter.
The Waltham program is not without challenges — especially when children learn that they’re going to need to exercise, stretch, and do schoolwork while experiencing significant discomfort. Parents can be a tough sell on the concept.
“We recognize how challenging it can be to fight against the parental instinct to protect children against pain and distress by having them rest and lie down,” said Caitlin Conroy, director of psychology at the Waltham center.
Parents attend daily meetings to gain support from each other, learn skills to help their child work through painful episodes, and to teach themselves not to focus as much on their child’s symptoms.
“We have rules that we ask parents to follow,” Conroy said. Constantly asking about pain is a no-no because children often find that they’re not thinking about their symptoms until their parents ask.
“We’d rather parents check in with kids by asking what they accomplished during the day physically, socially, and academically,” Conroy said.
Normalizing family activities is another rule parents are instructed to follow, such as not excluding their “sick” child from chores or other responsibilities and not allowing pain to cancel fun family activities.
Acceptance of pain is a crucial psychological component of successful rehabilitation, said Karen Weiss, a psychologist and clinical director of the pediatric pain rehabilitation center at the Mayo Clinic in Rochester, Minn. — not affiliated with the Mayo Family clinic in Waltham — which accepts 13 to 18 children at a time in its three-week outpatient program. “Parents often focus on finding a cause and cure, but that’s not likely to happen so we try to get them to focus more on a restoration of functioning,” Weiss said.
Rojas said it was really hard for her to come to terms with those concepts. “The most important thing I learned,” she said, “is that we couldn’t wait for the pain to go away before she tried to start walking again.”