America’s children are in pain, too. But they shouldn’t be treated as little adults.
Part 2 of a five-part USA TODAY series exploring chronic pain, the challenges of treatment and the scientific advances offering hope for the future.
Dr. Roger Saldana hates the term "no pain, no gain."
Instead, the pediatric orthopedic surgeon teaches his young patients to pay attention to their bodies and rest when they hurt instead of trying to push through.
"Kids shouldn't be playing in pain," said Saldana, who works at Nicklaus Children’s Hospital in Miami. "This is your body forever. It's important to understand that."
Studies show that at least 1 in 5 children live with chronic pain, typically caused by injuries, accidents or bad luck from birth.
And pediatric pain may be getting worse, experts say, as kids stick with one sport year-round, increasing their repetitive motions and therefore their injury risk, and as young people struggle more with emotional challenges like anxiety and depression.
When it comes to pain, children are not just little adults. The growing skeleton is very different from the adult skeleton. Kids heal faster, metabolize drugs differently and react to stress differently, Saldana said. They have less blood volume and their joints are different from adults'.
So their treatment for pain needs to be different, too.
The best way to address chronic pain in children is not with a pill but with a multi-pronged approach that includes healthy eating, adequate sleep and exercise, physical therapy, activities that bring the child joy, and social and emotional support including treatment of anxiety or depression, experts said.
Saldana has never in his career sent a child home with a prescription for opioids and rarely with any pain medication at all. He uses opioids only for surgical pain in the hospital, not chronic pain, he said.
About this series
To better understand America’s pain problem, USA TODAY spoke with more than 50 experts and people living with chronic pain. The reporting resulted in America in Pain, a five-part series exploring the reality of pain, pain medications, nondrug alternatives and the scientific advances offering hope for the future.
Opioids are appropriate for some types of chronic pain, such as cancer and sickle cell disease, but they are used more sparingly in children than adults, because "the risks and downsides of using them chronically are greater the younger you are," said Dr. Charles Berde, who runs the oldest and busiest pediatric pain clinic in the world at Boston Children's Hospital.
Doctors also do more now to treat pain after surgery with non-opioid medications and local anesthetics, he said. A decade ago, a teen getting wisdom teeth pulled might have been given 30 to 40 opioid pills to manage their pain. Now they're generally given no more than two pills, or none at all, he said.
Children's pain generally resolves faster than adults'. Children's joints haven't deteriorated yet, and kids are more capable of changing their behaviors and mindset, Berde said.
Addressing childhood pain quickly reduces the likelihood it will become hard-wired in the brain.
"The sooner you can intervene and change the trajectory, the better your outcomes are going to be," said Dr. Nivez Rasic, a pediatric anesthesiologist at Alberta Children's Hospital in Calgary, Canada. "If you can get on it early, these children can have very good outcomes and not suffer a lifetime of chronic pain."
Parents need support, too. "It's not easy being a parent of a child who has chronic pain," Rasic said.
As with adults, girls tend to suffer more from some types of chronic pain than boys, Berde said. The difference starts just before adolescence and is driven by conditions more likely to strike girls, such as migraines, fibromyalgia, joint and muscle problems in the jaw and chronic regional pain syndrome.
Complementary therapies like yoga and acupuncture haven't been well studied in children's pain. But Saldana tells his patients that if they want to try those approaches, they should, because there's so little risk.
As with adults, psychiatric medications and psychotherapy can help treat pain in kids, Berde said. Not because children are imagining their symptoms, but because some psychiatric medications also have pain-blocking powers and because resolving mood issues and developing coping strategies can make a profound difference in the perception of pain, he said.
Cognitive-behavioral pain management, including relaxation training and mindfulness meditation, can be used for children as young as 6 or 7 for treatment of chronic headaches, abdominal pain and musculoskeletal pain, Berde said. Physical therapy, including aerobic and resistance exercise, is another key component of chronic pain treatment.
All of these approaches should be aimed at getting kids back to school by teaching them to reframe their idea about what the pain means, Berde said, from "'I have intolerable pain and I'm disabled' to 'I have pain. It is there but I can live with it and I have a life.'"
‘No way to live’
For Myles Newsome, 16, of Bellaire, Texas, there's no end date for the constant stabbing pain he feels all over.
Myles has sickle cell, an inherited disease caused by misshapen red blood cells that can get stuck in vessels and deprive tissue of oxygen, triggering misery.
Dr. Titilope Fasipe, Myles' hematologist at Texas Children's Hospital, said sickle cell is often described as having "glass shards running through your blood vessels."
Such severe pain in children is often overlooked. "We sometimes ignore that children can have these types of experiences," she said. "We need to give them a voice."
Fasipe, who has sickle cell herself, remembers how hard her disease was for her own parents. She tries to reassure the parents of children with sickle cell. "You know what? Your child is going to be OK," she tells them. "This is a new world for sickle cell, and we're going to work hard to get your child to be the best that they can be."
Unrelenting pain can be depressing, she acknowledged.
"If your world is always gray, it makes your pain even worse," she said. So she tries to help her patients stay engaged in activities they enjoy. "We don't want your life to fully be on pause."
Myles' certainly isn't. In addition to going to school, he plays football, hangs out with friends, cooks for himself and his attorney mom, and reads and watches animé.
Because he acts so much like other teens, people don't realize how sick he is.
"Most kids with sickle cell aren't playing football," said his mother, Tracy Glenn. "He's always been very brave and strong."
A heating pad offers Myles a little relief. Glenn provides frequent massages. Rubbing painful areas with the cannabis derivative delta-8 and CBD alternatives, which are legal in Texas, sometimes allows him to focus on his schoolwork or helps him to sleep at night, and it gives his body a break from opioids.
Still, his pain typically hovers around an 8 or a 9 on a 10-point scale. On a good day, maybe it's a 4 for a while.
"It's not easy, but I'm used to it," said Myles, a junior, who dreams of going to the best culinary school in the country after he graduates from Bellaire High School.
He also takes some opioids to cope with the pain.
People with sickle cell do not have higher rates of addiction than the general public, Fasipe said. But opioids do have side effects, such as constipation and they can affect breathing, so children like Myles are monitored closely. "We use opioids in a safe, controlled setting, and we respect that boundary to prevent side effects,” Fasipe said.
When the pain becomes very severe and Myles needs more relief, he has to be hospitalized to receive opioids and other pain medications, such as ketamine, intravenously.
Sickling blood in his chest recently made it painful to breathe. He has had to go to Texas Children's more than a dozen times this fall, including two ER visits and four hospitalizations.
His mother hopes he'll be eligible and have the opportunity to receive gene therapy when he graduates. It's only an experimental treatment at the moment, but it looks promising for actually addressing his underlying genetic disease and reducing his pain.
Myles is more hesitant about changing his routine.
"He's so used to it, he doesn't realize how poor his quality of life is," Glenn said. "Whereas I look and I say 'This is not how a kid should live.' … A week out of every month in the hospital is no way to live."
‘Better than before’
In contrast to Myles, Jacob Pozo's shoulder pain was relatively easy to resolve.
For Pozo, 12, of Homestead, Florida, rest, physical therapy and a pitching coach were enough to address shoulder and elbow pain that started while pitching a game in February 2021.
Saldana, his doctor, told him to avoid contact sports for three months. Jacob, who's "so used to doing something," according to his mother, Jessica Borges, burned off extra energy in a pool and riding the family's exercise bike.
He also went through physical therapy three times a week for two months. His parents hired a private pitching coach to teach Jacob how to use proper mechanics.
In some ways, childhood pain is useful.
"We learn things to avoid because it hurt once when you were young," Berde said. "Avoidance of risk and feeling bad and feeling pain are powerful shapers of our behavior."
Pain strikes on two time scales. Acute pain, say from an injury, accident or surgery, comes on fast and goes away as the body heals. Chronic pain is defined as pain that lingers for three to six months or more, generally after whatever was obvious – a cut, a bruise, a burn, a break – has healed.
Acute pain is normal; chronic pain is much harder to treat.
Rasic compares chronic pain to a car alarm going off at 3 a.m. "The thief runs away and is long gone, but the car alarm keeps ringing," she said. The neighborhood wakes up. "Everyone thinks the danger is going on, but the danger has long since left."
Saldana's strategy with Jacob helped prevent his acute injury from becoming a lifelong one.
After physical therapy and some coaching, Jacob was cleared to return to baseball. He played in a tournament in July and said his pitching was "better than before."
"I used to go under the ball when I threw it," he explained in a recent video chat, motioning with his right arm. The pitching coach, he said while demonstrating, "taught me to come from over the top and use your wrist mostly."
He continues to work on his mechanics every Saturday at Manoah Driven gym in Miami, and his pitching arm is pain-free.
Jacob said he doesn't play baseball for fun. He plays or practices four days a week year-round to prepare for the major leagues. His role model is a distant relative, Alek Manoah, a pitcher for the Toronto Blue Jays.
After his injury, Jacob returned to pitching, first base and his newest position: catcher.
Catching is now his favorite. "You're involved with every pitch. You get the ball more often," he said. "And you get dirty a lot."
Attacking pain from many directions
Eliana Isabella Ruiz-Estrada's back pain was trickier to address.
Ruiz-Estrada, now 18, suffered for two years before steroid shots, physical therapy and an attentive doctor who wouldn't give up helped resolve it. At least for now.
Her pain journey started about a month after she tripped on the stairs.
Just as the concussion healed, she started feeling a "bad, achy, almost pressure feeling" in both arms. Her mother suggested Tylenol and time. But over the next week, the feelings only got worse.
After tests turned up nothing wrong, her primary care doctor referred her to a neurologist who did more tests that showed nothing. The neurologist offered pain medications, which "put a dent in it, but didn't do as much as I wish it could have," and referred Ruiz-Estrada to a rheumatologist.
More bloodwork and tests showed nothing again, but they led to a prescription for more pain medication. "I'm like, 'Yay, more medication,'" Ruiz-Estrada said, her voice dripping with irony.
After months of waiting for an appointment, a pain clinic recommended physical therapy. Eight months of it didn't reduce her pain. By this point, "I'm getting upset and irritated," Ruiz-Estrada remembered.
Finally, she got an appointment with Dr. Henry Huang, an anesthesiologist and pain specialist at a new pain clinic at Texas Children's Hospital. Huang sat with her for three hours, talking about where it hurt and what had happened.
He referred her for cognitive behavioral therapy to help her manage pain and anxiety, optimized her medication management and sent her to another physical therapist to strengthen her core.
When that didn't fully resolve her pain, he initiated a series of steroid shots. The first, into her sacroiliac joint near her hip, was "one of the most painful things I've ever experienced," Ruiz-Estrada said. Worse than when she broke her hand. "The first three days, I felt like I was dying."
The pain improved where the shot went in but got worse higher up. On Aug. 8, he gave her another set of shots, this time in her back.
Huang sees steroid injections as an opportunity. By relieving the pain, even if only for a few months, it breaks the cycle and gives the young person a chance to reset with physical therapy and psychotherapy.
"You ought to use that time where you don't necessarily have a lot of pain to really try hard to correct your posture, to move in the right direction, to exercise every single day and really practice coping, while you don't have a large capacity that is occupied by the pain," Huang said.
He thinks Ruiz-Estrada has struggled so much to find effective treatment in part because her pain was allowed to flourish for so long. Like others with longstanding conditions, "ultimately, she may need a powerful technique to break the pain cycle," he said.
For her part, Ruiz-Estrada saw Huang as the first doctor who truly acknowledged her suffering and treated it as seriously as she did.
"I was desperate for relief," said Ruiz-Estrada, who felt as if she were missing out on her teenage years. "All my peers are doing all the things I love, and I can't do them without being in severe pain."
Now a convenience store cashier living in Conroe, Texas, Ruiz-Estrada is comfortable overseeing the gas station and self-checkout, where she doesn't have to lift heavy cases of water or beer. The store she recently relocated to has fewer rude customers, which has helped her feel better. She was excited recently to be able to play soccer with her boyfriend.
"I feel like I have a really good grasp on (my pain)." Still, she said, "I would rather have experienced this when I'm seven decades older."
Contact Karen Weintraub at kweintraub@usatoday.com.
Health and patient safety coverage at USA TODAY is made possible in part by a grant from the Masimo Foundation for Ethics, Innovation and Competition in Healthcare. The Masimo Foundation does not provide editorial input.
This article originally appeared on USA TODAY: Kids face chronic pain. What treatments work for them?
