Breaking the Pain That Binds
Their daughter’s agonizing cry sliced through the silence of the night like a razor. Matt and Janeen Pietraszkiewicz were jolted awake. “It was two o’clock in the morning and it was a pitch that rattled my ears,” says Janeen. “I went into Kalei’s room and she grabbed her ankle, and was rocking back and forth. Sweat was coming down her face.”
Earlier in the day, six-year-old Kalei, a competitive cheerleader, complained of pain in her right ankle. Janeen chalked it up to strain from practice. Kalei had a slight fever, so Janeen gave her a pain reliever. A few hours later, things took a turn for the worse. “Daddy came in my room,” says Kalei, “and he couldn’t even touch my ankle. I was screaming.”
Kalei’s temperature had soared to almost 105 degrees Fahrenheit. Janeen and Matt knew they were dealing with something much more serious than a muscle strain. But what? They called their family doctor who told Matt and Janeen to get Kalei to the emergency room where she would meet them. The doctor took one look at Kalei’s ankle, which had a red, dime-sized spot, and told Janeen that Kalei needed to get to a hospital specializing in pediatrics. There was no time to waste. By now the pain was spreading up Kalei’s body. “I really didn’t know what was going on,” says Kalei. “I just wanted someone to fix me.”
Kalei was diagnosed with osteomyelitis, a painful bone infection. “It literally drilled a hole through her ankle bone,” says Janeen. Surgery was needed. Amputation was a possibility. “It was super scary,” says Kalei.
Kalei emerged from the surgery with her leg intact. But it was the beginning of a years-long relationship with debilitating pain stemming from another underlying condition. Kalei had amplified musculoskeletal pain syndrome (AMPS), a neurological aberration resulting in intense pain beyond what is considered “normal.” A twisted ankle, a stubbed toe, a bump of the shoulder and Kalei’s pain would skyrocket to a “10” and wouldn’t go away for days.
But it would be another three years, when Kalei was 9, before that diagnosis would be made. For Kalei and her family, life would never be the same.
“It’s all in her head.”
“She’ll outgrow it.” “She just wants attention.”
“Have you tried changing her diet?”
Everyone it seemed had an opinion or theory about the cause of Kalei’s pain. Janeen warded them off with a mother’s steely belief that her daughter’s pain was real. And it was.
“If she got any kind of cold or sickness it would last for days, and she would have pain in that specific area,” says Janeen. “We went through years of friends and family convincing us she was a hypochondriac. Even doctors weren’t sure why she was complaining more than other children.”
Kalei suffered in another way too. “A lot of my friends thought I was crazy,” she says. “They just didn’t talk to me any more and I lost some friends. A lot of people still don’t believe me.”
Before AMPS, Kalei was a rambunctious, athletic child. She enjoyed cheerleading, playing football, and romping with her brother Jake, and her dog, Daisy. AMPS changed all that. “I loved my four-wheeler,” says Kalei, “but I could only ride it a few minutes. I couldn’t hold on to the handlebars because the vibrations hurt too much. If I rode my bike and fell over, it would hurt for days.”
Matt replaced the door knobs with levers throughout the house because Kalei had trouble using her hands. She couldn’t climb stairs, so her father carried her up and down to her room. Kalei began staying home and missing a lot of school. Still, she kept up her grades and made the honor roll. “She has an exceptional brain,” says Janeen.
Medications were ineffective. Tests showed Kalei was fine. But she wasn’t. “The doctors told us that she was just more emotional than most kids,” says Janeen. “What are you supposed to think? I didn’t want to say it’s mental. She was eight at this point.”
Faced with ridicule from her classmates, Kalei began home school, maintaining excellent grades. The pain isolated not just Kalei, but the family as well. “It was a really dark time in our house because nobody understood what she was going through,” says Janeen. “We kind of cocooned ourselves because we were tired of everybody’s opinions.”
Finally, a pediatric rheumatologist diagnosed AMPS. It was a good news, bad news scenario. The good news was, now Janeen and Matt knew the reason for Kalei’s pain. The bad news, the doctor said, was there is really no way to treat AMPS, and that Kalei would likely have to live with it for the rest
of her life. “That’s when the waterworks started,” says Janeen, “because I have fibromyalgia and colitis, so I know what it’s like to live with pain.”
Kalei was referred to a clinic specializing in AMPS and given exercises to do at home, which didn’t help. A case of the flu set her back even more. “It was like the pain was ten times worse,” says Janeen. “She could barely get up to go to the bathroom. We would have to lift her out of bed.”
Desperate, Janeen started a blog on the internet. She poured out her heart hoping that someone, somewhere, would read it and offer help. A friend who worked for Good Shepherd saw the blog and told Janeen about Good Shepherd’s Pediatric Chronic Pain Management Program. Janeen called and set up an appointment. More than anything, Janeen wanted to believe that here at last was help. “My heart melted, and I believed with every ounce of my existence that this place was going to heal Kalei,” says Janeen.
That Friday, Kalei was evaluated. Three days later, she began physical and occupational therapy as one of the first AMPS patients in the specialized Good Shepherd program. Kathleen Fortier, then administrative director of outpatient pediatrics, recalls what Kalei was like when she first saw her. “Kalei could barely walk 50 feet because of the pain in her legs and ankles,” says Kathleen. “She had trouble wearing clothes because her skin was so sensitive. She also had to wear her hair the same way in a side ponytail for months. It was the only way she could tolerate feeling.”
Kalei was introduced to aquatic therapy. The warm water helped relax her nervous system and the buoyancy of the water took the stress off her joints making it easier to move without pain. “There even was a treadmill in the pool,” says Kalei. “I loved it, because I couldn’t walk on a treadmill on land. There was a bike in the water, too, and we played volleyball and ran races.”
Within a week, Kalei literally was making great strides, walking from the parking garage to her therapy, no small distance. By the third week, Kalei was climbing stairs. “In two weeks, I was walking normally and running,” says Kalei with a big smile. “I got out of therapy one day and I ran to mommy.”
It was a milestone moment. “I lost it,” says Janeen, recalling her tears of joy.
Dealing with the psychological underpinnings of the disorder, and its complex relationship with the physiology of pain, was essential to Kalei’s ongoing recovery. Dr. Elona Suli-Moci, a pediatric neuro-psychologist at Good Shepherd, says lifestyle factors, stressors and academic performance are all important factors to consider.
AMPS also often stems from an injury or illness that caused pain, says Dr. Suli-Moci. Afterwards, the pain signal strays from its normal route to the brain, and takes a shortened path to nerves that react by constricting the blood vessels. When this occurs, says Dr. Suli-Moci, the vessels are deprived of oxygen, leading to a buildup of lactic acid and resulting in amplified pain throughout the body.
Working closely with Kalei’s therapists, Dr. Suli-Moci helped Kalei learn how to channel her anxiety in a positive way. “Some of the tools we worked on were identifying how various feelings were experienced in her body and how to restructure her thoughts,” says Dr. Suli-Moci. “Kalei was taught relaxation exercises, including guided imagery and progressive muscle relaxation to use with various levels of anxiety.”
Kalei has another, unconventional tool in her wellness arsenal: Daisy.
“She can tell before Kalei feels the pain coming on,” says Janeen. “She’ll follow Kalei around the house and when Kalei lies down, Daisy sits on her and is like a living, breathing, weighted blanket.”
“Sometimes it helps if I lie down or if I exercise,” says Kalei, “and Daisy knows whether it's exercise pain or lie-down pain.”
By the time Kalei finished therapy after three months, her pain and anxiety was greatly diminished. She is back playing basketball with her brother, going shopping and doing many of her usual activities. Kalei wants to resume shooting her bow and arrow, and hopes to eventually get her hunting license so she can join her dad.
“Good Shepherd saved her,” says Janeen. “It absolutely, positively brought my kid back to me. Good Shepherd was like the light in her.”
Although Kalei still experiences bouts of anxiety and pain, and is cyber-schooled at home, she attends school dances, football games and other events with her friends. She returns to Good Shepherd, “just to say hi,” to her therapists whom she came to love through all the tears.
With her newly-learned coping tools, life looks so much more hopeful for Kalei as she approaches 13. “Good Shepherd means getting better,” says Kalei, who wants to be a pediatric occupational therapist so she can help other children with AMPS. “It means running and being healthy. It means playing with my dog. That’s really why I wanted to get better.”
Daisy wags her tail in agreement. Time to go out and play.