Lack Of Access To Specialists, Doubts About Children’s Pain Limit Pediatric Care

Here’s how to acknowledge and address kids’ pain

By Kirsten Ballard

As late as 1980, medical professionals widely believed that infants couldn’t feel pain. When children complained of unexplainable or invisible pain, it was chalked up to “growing pains” or a dramatic, hysterical child—a crybaby.

Although our understanding of pediatric pain has evolved in the years since, there is still a severe dearth of pain care facilities specializing in children’s pain. William Zempsky, MD, a pain and palliative specialist with Connecticut Children’s Medical Center who is considered a leading expert in the field with over 20 years of experience, estimates there are fewer than 50 programs in the United States focused solely on children’s pain.

He points to obstacles with licensing and certification as a major barrier to expanding the field.

“The only way to become board certified is to be a graduate of an anesthesiology, physical medicine and rehabilitation, psychiatry, or neurology residency,” he says. Despite his extensive background in pediatrics, particularly pediatric emergency medicine, Zempsky is not board certified in children’s pain medicine.

“Pediatricians that completed a pediatric residency cannot go and get formal training in pain medicine that would lead to a board [certification],” Zempsky says. However, anesthesiologists rarely go into pediatric pain medicine, he explains, because the field requires extra years of training for a specialization that often pays less than practicing general anesthesia.

The long road to finding care

Ardin Berger, DO—who recently left their work as a pediatric pain physician at Stanford to focus exclusively on alleviating the pain of individuals living with Ehlers-Danlos syndrome and hypermobility spectrum disorders—explains that even in areas with the best access to clinics and trained doctors, the waitlist to be seen by a pediatric pain specialist starts at three to six months.

And that doesn’t take into account the layers of bureaucracy and roadblocks set by many health insurance companies that may require patients to first see their primary care physician or “go through specialists who aren’t actually [children’s pain] specialists just to get to us,” Berger explains. “If you add on the socioeconomic impacts [of having to travel and take time off work], it is extremely tough for families.”

Henry Huang, MD, a pediatric anesthesiology and pediatric chronic pain management specialist at Texas Children’s Hospital in Houston, sees people from all over Texas and even neighboring states: “People are coming to us from great distances,” he says.

Don’t brush aside children’s pain

“Pediatric pain is not much different from adult pain,” Berger says. “Just because a child is young doesn’t mean they don’t understand their body.”

They add that it is extremely important for pediatricians to learn what the red flags of chronic pain in children are and when to refer them to a specialist.

Berger often works with children who have Ehlers-Danlos syndrome (EDS), a group of rare inherited conditions that affect connective tissue, or a broader array of hypermobility spectrum disorders.

“By the time I see my patients, most of them have been told their pain is in their head,” Berger says. “Or they’ve been told they have growing pains, but then they never grow out of it for years and years and years, and I end up diagnosing them.” It is common for children with a hypermobility spectrum disorder to be undiagnosed.

Ignoring, underestimating, or disbelieving children’s pain can have lasting harm.

“I think perhaps one of the most hurtful things a kid can experience is to be told, ‘The pain is all in your head,’” Huang says. “There is a connotation that implies the kid is faking their experience. They may feel mistreated and misunderstood.”

In the case of patients with EDS, Berger often treats individuals who have been told their pain is because they’re highly anxious. “But actually, the anxiety is a secondary condition resulting from their collagen disorder,” they explain. “The connective tissue difference ends up leading to an abnormally balanced nervous system. The balance of neurotransmitters involved in both pain processing and psychological health is also affected. Many psychologists still to this day train that if you calm a child’s brain down, then their pain goes away. The problem is that we can’t correct someone’s primary collagen disorder simply by calming them down.”

Talking to children about pain

Berger often urges their patients to focus on descriptions of their pain, rather than a numeric scale. “Kids will start to describe their pain in pretty impressive ways, so I don’t think a number is super important,” says Berger. “It’s more about the relationship to pain that matters. I let them tell me if the pain feels like a blue balloon wrapping around them. That’s exactly what I want to know.”

They recommend that parents focus on day-to-day aspects of their child’s pain experience—can they run in the yard without getting tired? Are they in too much pain for school? Even if a child does experience some level of constant pain, Berger explains, the most important question is: “Can they enjoy life?”

Unfortunately, too many kids are waiting too long to see the kinds of doctors who can help them if their pain forces them to answer that question with a “no.” As they wait for care, sometimes the best option is to adjust their mindsets surrounding activity and rest.

“I think that the normal mentality for any child is to exhaust themselves with activities and enjoyable experiences,” Huang says. “Whereas when you’re dealing with chronic pain, the approach should be to engage in the activities but to listen to your body and be mindful that too much activity can cause a flare-up.”