The pain seemed to come from nowhere. Although fifth-grader Amelia Watt had sprained her ankle playing soccer a few weeks earlier, the injury had seemed inconsequential. Yet now, she couldn’t put any weight on her foot without crying. Soon, the burning pain crept up her leg and her foot began to turn purple. Even taking a shower had become excruciating. At age 11, this vibrant, active girl was relegated to crutches, afraid to walk.
Eventually, Amelia’s local physicians diagnosed her with complex regional pain syndrome (CRPS), a chronic pain condition believed to be caused by malfunction of the nervous system. CRPS tends to occur after a minor injury and is associated with persistent pain in one or more limbs, as well as sensitivity to touch, swelling and color changes to the skin.
“People told us to just give it time and she’d be fine, but it was getting worse,” remembers her mom, Sarah. “Chronic pain can take over your whole family, and we were living in dread of what would happen next.”
An intense approach
On the recommendation of a friend, the family decided to contact the Chronic Pain Clinic at Boston Children’s Hospital. After evaluation by the team, Amelia was recommended to the Pediatric Pain Rehabilitation Center (PPRC) at Boston Children’s Hospital. After an initial visit, it was clear that Amelia would benefit from the intensive approach offered by the PPRC’s care team. Encouraged by their visit, Amelia’s parents took her out of school and moved from Maine to Boston for five weeks so their daughter could complete a rigorous program of physical, occupational, recreational and psychological therapy. From 8 a.m. to 4 p.m. every day, Amelia worked with the PPRC’s clinicians to learn better ways of coping. In the evenings, she participated in a few more hours of physical therapy.
A wonderful surprise
Her parents were hopeful, but tried to keep their expectations in check. “The PPRC doesn’t promise that they’ll get rid of the pain. They do promise your child that they’ll get their life back,” says Sarah. “They also told us that Amelia would be walking again by the end of her first week there — but she was in such pain, we didn’t think that was possible.”
It was a wonderful surprise, then, when Amelia — with the aid of a cane — strode out to greet her parents that Friday. Even more surprising, she was having fun. Amelia bonded with other kids and developed relationships with her clinicians, including psychologist Dr. Edin Randall. Physical therapy was exhausting, but playful, too: For one exercise, she had to practice putting weight on her affected foot by using it to wipe shaving cream off of a mirror.
The Watts credit Amelia’s progress to her hard work, as well as to the dedication of her care team. “There’s a magic that happens when all these experts work as a team with the goal of helping patients live with pain and move on,” Sarah says. “That kind of integration and coordination doesn’t seem to usually happen.”
A positive memory
Although she wasn’t immediately fully functional after leaving the PPRC, Amelia slowly regained her abilities over time. As she prepares to enter high school this fall, she’s back to enjoying active hobbies like running, water skiing and playing soccer. And she’s found that the skills she learned at the PPRC have applications well beyond chronic pain: Some of the coping strategies have proven useful in helping her quell anxiety before a big test, for example.
What could have been a difficult memory of a dark time is now one that Amelia and her parents recall with a smile. “It’s a very positive memory for us and she’s come so far,” says Sarah. “We’re so glad we found we found Boston Children’s.”
Learn about the Pediatric Pain Rehabilitation Center.