Many children, especially girls, live with chronic pain

Many children, especially girls, live with chronic pain
By Andy Dworkin, The Oregonian
April 07, 2010, 5:00AM

When a nurse asked Ally Johnson to rate her pain on a 1-to-10 scale, the Gresham teen said, “Thirteen.”

No, the nurse explained. The scale stops at 10. That’s the worst pain possible.

“I was at a 10 in November,” says Ally. “Now I’m at a 13.”

For more than a year, Johnson has suffered from headaches and pains in her belly as miserable as they are mysterious. More than 20 doctors have examined the Centennial High sophomore or the results of her many tests, including a CT scan, MRI, nuclear medicine scan, ultrasound, endoscopy and colonoscopy. Johnson has been through two surgeries and a host of drugs. No one has figured out just what causes her pain, or how to keep it from growing steadily worse.

Johnson has spent most of the past month on a couch at home, her pain so great she can’t go to school or, most nights, even bear the walk down the hall to climb into bed. She’s frustrated that no one knows what’s wrong with her, frustrated that some medics don’t seem to understand her pain.

“They don’t get it because I’m not crying and screaming all the time,” she said. “They don’t understand, crying makes it worse, screaming makes it worse, and it doesn’t help anything.”

Ally’s pain is extreme, but not extraordinary. Chronic pain is surprisingly common, even among children. Just how many people suffer chronic pain depends on your definition; most broadly, recurring pain may affect a third of the nation. And up to 50 million U.S. residents may have their activities limited by chronic pain, including common causes such as arthritis.

Statistics on kids are scarcer, but surveys suggest that one of every 12 children deals with frequent, severe pain. Chronic pain seems to be more common as kids age, with adolescent girls most affected. The condition is more than a nuisance: Kids in pain often miss school, drop out of sports and other extracurricular activities and sleep poorly. The condition can take a big toll on parents and other caregivers, too.

“When your kid’s in pain, and you can’t fix it, it just rips you up,” said Randi Johnson, Ally’s mother.

Ally started Centennial as a star, a 4.0 student who worked on the school newspaper and played on Centennial’s softball and volleyball teams. Last January, at a softball tournament in Springfield, she came down with the flu. Usually, influenza gets better in a couple of weeks. But by mid-February, Ally felt much worse. Her head throbbed and the right side of her belly ached. She was nauseated and had dry heaves. Her mother took her to the emergency room, the first of at least seven ER trips since then.

Doctors suspected a problem related to Johnson’s periods, which looked like a good thought. A pelvic surgery last June found and removed a cyst, and a gynecologist diagnosed endometriosis, an often-painful condition in which cells that normally line the uterus grow in the wrong places, such as on the ovaries. Two days after surgery, Ally was back at Centennial, taking her freshman finals in a wheelchair.

The surgery was a success, measured in every way except pain. In the weeks after the operation, Ally’s pain hovered at 6 or 7 on a 10-point scale, and it wasn’t easing. She tried different hormone pills, but none increased her comfort. In October, the family decided to try injections of leuprolide. The pricey drug — $600 a shot — drastically cuts estrogen levels, curbing growth of cells that can cause endometriosis. It also stops a woman’s menstrual cycle.

“Going to school, my teammates would say, ‘What’s wrong? You look down.’¤” Ally said. “It’s hard to say, ‘I’m going through menopause and I’m only 15.’¤”

After the first shot, Ally estimated her pain went from a 6 to an 8. A second shot in November sent the pain level to 10. The Johnsons never went for the third shot, pursuing a host of tests to check Ally’s appendix, gall bladder and other organs.

“She’s had more tests than most people have had in a lifetime,” Johnson said. “We have spent literally thousands and thousands dollars trying to find it out.”

The tests always looked healthy — results that, after a while, grew surprisingly unwelcome. The family is frustrated by not having an answer, and by having to spend so much effort coordinating tests and thoughts gleaned from specialists all over town.

Ally also racked up prescriptions all over town, for antidepressants, antihistamines, anti-inflammatories, antiemetics, birth control, epilepsy meds, sedatives and pain pills. Lots of pain pills.

“I’ve had the oxycodone. I’ve had the hydrocodone. I’ve had the morphine. It doesn’t help anything,” Ally said.

In February, she went to a special pediatric pain clinic at Doernbecher Children’s Hospital. The experts aimed to curb Ally’s pain and get her moving again with medicine, pain management classes and physical therapy. Racked by pain, Ally was hesitant.

“They wanted me to get on a treadmill, and I looked at them dumbfounded,” she said.

While it may sound exhausting and uncomfortable, moving can be crucial for many people with chronic pain.

“In kids, we can usually make it go away with intensive exercise, just pushing through the pain,” said Dr. Mark Shih, who runs a pediatric pain program at Legacy Emanuel’s children’s hospital.

Shih has not treated Johnson, but he’s seen patients with similar histories, who suffer intense and increasing pain despite a host of tests and doctors visits that have ruled out obvious causes, like sprains or arthritis.

“Often, kids come to be almost medicalized, where the more tests you get, the worse your pain gets,” he said. “The more specialists you see, the worse your pain gets.”

Doctors call these confounding chronic pain syndromes by many names — juvenile primary fibromyalgia, tension myositis, amplified musculoskeletal pain or reflex neurovascular dystrophy, Shih’s term. Whatever the name, one key to understanding and treating the condition is knowing that the hurt is intense and actual.

“There’s real pain,” Shih said. “A lot of times we see (patients) and they’re debilitated, missing a lot of school.”

It’s not clear just what causes these pain syndromes, but Shih describes it as a sort of “short circuit” of the nervous system that jumbles messages from pain-sensing nerves and autonomic nerves that control involuntary things such as blood flow. Often, Shih said, a small injury or illness will start one of these pain cascades in kids. Usually, stress plays a big role, too.

“The prototypical student we see was a 4.0 student, excelling in multiple sports, often playing an instrument,” he said, “a high-achieving student from a high-achieving family.”

Doctors treat these children in different ways, often with a mix of medicine, physical therapy and counseling to manage pain and stress. Legacy’s clinic takes kids off all pain drugs, however — if they worked, Shih notes, the kids wouldn’t be in his office. Instead, it runs kids through a three-to-four-week “boot camp” that tries to get patients to move as if they have no pain, manage stress and get used to pressure on painful areas of the body. Most kids who go through the program are pain-free in a month or two, Shih said.

It’s not always easy to treat chronic pain, though therapy and other treatments can help many people learn to tolerate or reduce their pain. Still, many people battle pain for much of their lives. And kids who don’t find good pain relief may grow up to be adults with chronic pain, Shih said.

A month ago, Ally quit going to school. It hurt too much to move around the halls, to deal with the bright lights and loud sounds. Reading gives her headaches, so she listens to audio books. One of her teachers comes to help tutor her after school. She spends much of her time on a couch at home, with the curtains drawn and her shirt pulled up over her stomach, which has grown swollen and hypersensitive to pain.

“It’s at the point right now where I can’t even have a blanket over it,” she said.

Randi Johnson said she’s open to anything that might ease Ally’s pain or identify its source. She keeps seeking opinions from medical specialists, even as she’s consulting an acupuncturist and naturopath. Friends and family scour the Internet for possible diagnoses. Ally’s doctor just sent her files to the National Institutes of Health, which accepts 50 to 100 patients with mysterious ailments a year for an intensive work-up in its Undiagnosed Diseases Program. Johnson hopes to hear son if her daughter’s case was accepted.

Ally stays at home, trying to work with the pain and fend off negative feelings. Visits from friends and relatives help her feel better, she said, as does keeping a blog about her health and feelings. Still, Ally says she feels like she’s under house arrest, and just wants to cut her pain back to a 6 out of 10, at which she figures she could return to Centennial.

“My friends are always, like, ‘I don’t want to go to school.’ And I say, ‘I’ll trade you. I want to go back,’” she said. “It’s hard to know when I get up in the morning that my teenage life is going on without me.”