Suffer the Little Children: Treating Chronic Pain in Kids

Rachel sat in my office, tears streaming down her face, as she said, "Finally I have an answer, which means I'm not crazy." "Rachel"--a false name to protect her privacy--was a 13-year-old girl who suffered severe, unrelenting pain in her leg for almost a year before she was diagnosed with an entrapped nerve, which occurred after surgery. During that period her grades declined, she quit playing volleyball and she stopped hanging out with friends. Her absences from school increased so much that she was withdrawn and placed in home school. Due to the unrelenting pain and social isolation, she became depressed.

Chronic pain is not just the bad back you get later in life; children can develop it as well. It affects all ages and is often challenging to diagnose. In fact, pain is so poorly understood that until the late 1980s doctors didn't know that babies felt pain. This "discovery" led to administration of pain medication to babies undergoing procedures like open heart surgery, which had not occurred before. Another relatively recent finding was that untreated pain during infancy can change how a person feels pain for the rest of their life. Unfortunately, because of the lack of awareness that babies can even experience pain, these children have been left, forgotten, to suffer silently with their parents, family and friends.

Rachel is among the approximately 1 in 20 children who suffer from moderate to severe pain on a daily basis. This translates into roughly 3 million children and adolescents across the United States struggling with chronic pain. These children often use more medications, miss more school, and have a lower quality of life than children without chronic pain. Besides the personal harm a child experiences, chronic pain is also a significant economic burden: a recent study found that treatment for these children costs approximately $19.5 billion in health care dollars every year.

My work doesn't end with the child, though. Oftentimes I end up treating not just the child, but the entire family. Parents of these children report increased family dysfunction, parental stress, financial strain, anxiety and depressive symptoms. I hear the strain in their voices and see the plea for help in their eyes during office visits. I also see the emotional toll that excessive attention on the child in pain causes for siblings. It is not unusual for me to treat families who have traveled from another state or more than three hours for an evaluation.

Today, only 37 locations across the country treat children with chronic pain. Half of states do not have a program. Unlike adult pain clinics that rely heavily on procedures for pain management, pain programs for children typically do not do as many procedures. Multidisciplinary programs that include some combination of physical therapy, psychology, pediatrics, anesthesiology, social work, and acupuncture are used predominantly to treat pain in children. Unfortunately, these programs are expensive and often lose money for hospitals.

While the number of programs is still quite small in comparison with the need, this may be changing. Children's hospitals are now electing to address pain management because of changes in how they are paid for treatment. In the wake of health reform, how much a hospital is paid depends on how a patient fares after the visit. One measure of success in treatment is a patient's pain satisfaction scores.

Rachel is fortunate. Her diagnosis was easily treatable with repeated injections of a local anesthetic and Botox, which enabled her to stop most of her medications and return to a normal life. Not every child who has pain is so easily treated and they are left to find some way to cope alone. It is my hope that one day children, like Rachel, will not have to suffer while they wait to see a specialist. No child should ever be made to feel as if they are crazy because their pain is not recognized and addressed. As heartbreaking as it is for a child to experience unrelenting pain, it's even worse when they are left to suffer lifelong consequences from a failure to find a proper diagnosis or timely care. We're making strides, but our nation's health care system must prioritize increased access to pain management for children so that needless pain and suffering can be alleviated.