Sheer panic. It’s all I can remember.
Out of the blue, while enjoying his morning snack one day, my toddler started having seizures. And they didn’t stop. It was terrifying. He was admitted to the intensive care unit. Between seizures he was scared, flailing on the hospital bed, totally out of control. I wanted desperately to help soothe him but didn’t know quite what to do. My first intuition was to distract him. I remember grabbing a jungle pop-up book out of my diaper bag and springing the pictures open right in front of his face to block out all the doctors scurrying about. I made loud roaring sounds like a tiger to drown out all the scary medical noise. It didn’t help.
After a few moments, his nurse gently tapped me on the shoulder. “I wonder if you might instead try singing him a gentle lullaby?” she asked.
When I think back on this moment from more than 10 years ago, I can still vividly recall the feeling of helplessness. I remember wanting to do something to make my son better. And I remember that my first intuition — my excited attempt to distract with a book — turned out not to be the best choice. Indeed, the lullaby worked much better. Why hadn’t I thought of trying that?
Although my son was having seizures, the distress I felt as a parent in this situation has come to inform my work as a pediatric pain psychologist. In the counterintuitive world of chronic pain where I work, I often feel like the nurse in the ICU when I gently suggest to families that they try a new approach.
It’s not easy. I’m working with kids who are in constant pain and with parents who are panicking over their child’s suffering. I know how they feel.
My first goal is to help parents understand that psychological treatments are among the best tools to reduce chronic pain, regardless of what is causing the pain. Research shows that the impact of many different types of pain — including headache, abdominal pain, nerve pain and musculoskeletal pain — can be lessened with interventions that are rooted in psychology. While pain itself is not just a psychological problem, scientific studies spanning more than two decades consistently find that kids recover better when they are engaged in a multidisciplinary recovery plan that includes evidence-based psychological care.
To understand this, parents and kids need education about how the nervous system works: namely, that all pain sensation is actually processed in the brain, not in the tissues of the body. This means we can use brain-based strategies to “dial down” pain sensitivity, much like you might use a dimmer on a lamp to turn down a light. Understanding this fundamental concept opens the doors to teaching a variety of evidence-based, mind-body strategies — such as deep breathing, guided imagery and mindfulness — that reduce pain as well as pain-related difficulties, such as poor sleep and anxiety.
In addition to learning how to dial down pain sensitivity, psychologically based strategies are directed toward modifying how we think about pain.
It’s fairly easy to understand that ongoing pain is a scary experience for kids, but most people are surprised to learn that this innate fear of pain actually amplifies the pain signal leading to more physical discomfort. The antidote to this lies in retraining the brain to think about pain differently. For example, when kids shift from thinking, “This pain is unbearable,” to thinking, “Today is a tough day,” they almost immediately have less fear, and in turn begin to feel better physically.
Another target of psychological care, the structured behavioral approach to help kids return to activity, can also be confusing for children and parents, at least initially. As an early step in treatment, kids are often encouraged to get back to their daily routines even when pain is present. Some worry this could exacerbate pain. Our mind and body, however, are equipped with the capacity to rewire and adapt; through successive exposures to typical activity, we can often retrain the brain and body to move without fear — and eventually without pain.
Families often ask me how this array of child-centered psychology skills fit together in a pain recovery plan. To understand this, consider one of the most common hurdles that kids with pain must tackle: getting caught up in school. It’s common for a child with pain to fall behind in school. Getting back on track can be difficult. A pain psychologist can intervene by teaching a child mind-body relaxation skills to reduce pain sensitivity, advocating for supportive school-based accommodations, developing a stepwise plan for increased school activity (such as attendance or work completion), and monitoring progress by assessing pain triggers and alleviating factors along the way.
Notably, the psychology of pediatric pain also extends directly to parents. Though chronic pain affects 1 in 5 children, parents are seldom taught how to help manage symptoms. For example, when parents routinely ask a child with chronic pain the simple question, “How is your pain today?” or even, “How are you feeling?” they are inadvertently increasing a child’s focus on pain and this too can amplify the sensation of pain. Intended to be warm, supportive and productive, the habit of checking in about pain many times throughout the day is one of the first things I advise parents to stop.
Unfortunately, a family can find it tricky to access the targeted psychological intervention for pediatric chronic pain management, collectively included in a type of psychotherapy called cognitive behavioral therapy or CBT. There aren’t enough pediatric pain psychologists to go around, there can be insurance barriers and there are often long waits for service.
So, I began providing one-day CBT workshops for teens with pain and their parents. I had three simple goals:
●Increase access to care for children and parents.
●Help families gain a deeper understanding of how chronic pain cycles can be reversed.
●Empower kids and parents in the recovery process by teaching some of the evidence-based CBT skills that can help to reduce pain and improve function.
Additionally, within these group-based workshops, I wanted teens and parents to recognize that they were not alone in their struggle. Connecting to others who have a shared experience and learning from peers who have successfully returned to their full lives after dealing with chronic pain are essential for instilling hope and promoting engagement with these evidence-based skills. Now in their seventh year, these pain-management workshops have been replicated by more than a dozen children’s hospitals in the United States and Canada and have served as a first step in treatment for many families who have a child with chronic pain.
I recall how panicky I felt when my child was sick. And I often place myself in the shoes of the parents with whom I work. What would it feel like as a parent to have a child who hurts every single day? What parents need to know is that with targeted skills and strategies, kids and parents can shift from feeling helpless to feeling hopeful, and from barely getting through the day to getting back to their full lives.
The good news is I can see that some families are starting to think about the psychology of pain in a new way.
I recently met a 9-year-old girl who had pain for four months in her wrist. From a functioning standpoint, she was doing pretty well and our team doctor didn’t have much to offer. Still, her parents were concerned and they turned to me. “She seems so sensitive to pain. We’re not sure how to help,” they said.
In that instant, I recalled my feelings in the ICU with my agitated son. I remember how grateful I was to learn how to best help and know that all parents desperately need this kind of support. When I started to sing that gentle lullaby to my son, he almost immediately began to relax. And seeing that he was calm, I was able to relax a bit, too.
I wasn’t focused on what this meant to me as a pediatric psychologist at the time, but this memory serves to remind me still: parents and children are truly in this together. While the treatment for chronic pediatric pain is best informed by a multidisciplinary approach — often including medications and physical therapy — it’s essential that parents and kids learn the evidence-based interventions that psychology offers.
With these important skills in place, many kids and parents may begin to relax and to chart the path forward.
Coakley is a pediatric pain psychologist at Boston Children’s Hospital and an assistant professor at Harvard Medical School. She is the author of When Your Child Hurts and launched The Comfort Ability, a CBT-based program that provides one-day workshops on pediatric chronic pain management.