For her mom, Erin, it’s the Pain Rehabilitation Program at Seattle Children’s – and the physical and occupational therapists, psychologists, nurses and physicians who helped her daughter move past the pain that derailed her life earlier this year.
Chloe’s downward pain spiral started with a cat bite in January. By February, she had body aches that her pediatrician blamed on growing pains. A week later it morphed into a searing, all-over pain.
That’s when Erin scooped Chloe off the floor and rushed her to a local emergency room.
“The doctors told her she’d get better with rest,” says Erin.
But Chloe didn’t get better.
For weeks, she barely got out of bed and couldn’t tolerate being touched. She stopped going to school. And when she had to walk, she stayed on her toes because putting her heels down made it worse.
Her parents watched helplessly as Chloe bounced from doctors to psychologists and back again, but nobody could find a cause for the pain.
Getting to the right place
In March, Erin took Chloe to a new healthcare provider who sent them straight to Children’s, the only place in the region – and one of just a few in the country – with an outpatient rehabilitation program for kids who experience intense chronic and recurrent pain. The program draws patients from across the Washington-Alaska-Montana-Idaho region and beyond.
Chloe’s very real pain wasn’t a result of muscle or tissue damage, explains Sabina Havkins, a physical therapist who specializes in working with pain patients. Instead, it was a symptom of a mind-body miscommunication – her brain was sending an alarm signal to her nervous system, which her body interpreted as pain.
When an injury occurs, the brain’s “alarm system” normally protects the body against further injury by making the affected area super-sensitive, explains Dr. Gary Walco, director of Pain Medicine. In Chloe’s case, the alarm did not turn off when the injury healed. Instead, her brain and body got snagged in what he calls “a vicious downward cycle” where pain leads to decreased function, which leads to more pain, which leads to a further decrease in function.
The treatment is to interrupt the cycle by helping patients get back to normal activities.
For Chloe, “back to normal” meant off her toes and walking with a normal heel-toe gait.
“When we focus on the function and not simply the pain, the pain gets better,” says Dr. Walco. “So, treatment for these patients always includes an intensive rehabilitation component.”
Making hard work pay off
Chloe and Erin moved to Ronald McDonald House last summer for three weeks of all-day, one-on-one treatment with rehabilitation specialists at Children’s, including Sabina.
Although Sabina’s goal was to help Chloe get off her toes, that’s not what they focused on during their hours together.
“I didn’t try to change Chloe’s gait by telling her to walk on her heels,” says Sabina. “Instead, I created situations where her heels naturally came down – like walking up a hill, or on an inclined treadmill.”
To keep Chloe motivated, Sabina matched her therapy to her interests. Together, they took up geocaching, following their GPS to hidden containers in the neighborhoods around Children’s.
“The idea was to get Chloe to walk more, and also to distract her from focusing on the pain,” says Sabina.
Sabina’s therapy arsenal also included bucket stilts, bean bags, balance beams, a trampoline and a big pile of a squishy, putty-like substance for Chloe to push her feet into.
It was sometimes fun, says Chloe, but it wasn’t easy.
“It was like a bumpy hill – my pain level would get really high,” recalls Chloe.
The thought of going home and playing with her friends kept her going. Advice from her mom kept her honest.
“If it hurt somewhere, I’d have to tell my therapists – even if it meant more pain,” she says.
“In most settings, physical and occupational therapists use pain as an index to stop treating,” notes Dr. Walco. “Our therapists don’t stop pushing for pain. Instead, they help motivate patients to cope and move through pain.”
Sabina says she doesn’t ask patients about pain on a daily basis.
“We talk more about the things they do have control over – like how fast and efficiently they can move,” she says.
Sabina set achievable daily goals for Chloe, celebrating her successes and building to bigger goals. Together, they hatched plans for an even bigger goal when Chloe got home: a mini triathlon.
“We have a bike, a treadmill and a pool,” says Sabina (who is also a certified athletic trainer and a marathoner). “Why not set this up as a goal for the post-therapy world?”
The new normal
On Aug. 18, she completed the Titanium Man Junior Triathlon in Richland, Wash. – a 250-yard swim, 4.5-mile bike ride and one-mile run.
“Watching her go from not moving at all to finishing the triathlon was tremendous,” says Erin.
An active lifestyle is essential to Chloe’s continued health, so the entire family – Chloe, her parents and her younger sister and brother – has taken up hiking and backpacking.
“We’re all feeling the benefits of helping Chloe stay pain-free,” says Erin. “It’s made our family closer.”
Chloe finished taking medication last month and says she feels fine.
“It’s very challenging to work with people in pain,” says Dr. Walco. “And, it’s incredibly rewarding to watch someone recover and transform.”
If you’d like to arrange an interview with Chloe or her parents, or a member of Chloe’s care team, please contact Children’s PR team at 206-987-4500 or at firstname.lastname@example.org.