Complex Regional Pain Syndrome: Rebecca's Story

Pediatric Care in Florida

Patient Story Highlights

  • Rebecca injured her ankle— no one is sure how — while at camp two years ago.
  • She was dealing with complex regional pain syndrome (CRPS), a form of chronic pain typically involving an arm or leg.
  • Typical treatment for CRPS can take up to eight weeks, Cucchiaro and Frye were able to send Rebecca home after just a week of intense treatment.
Rebecca with Giovanni Cucchiaro, M.D.
Rebecca with Giovanni Cucchiaro, M.D.

Rebecca is a cheerful 10-year-old girl with long brown hair and a ready smile. She loves dancing. She’s close to her family and excels in her classes. She even takes part in before- and after-school studying and activities. It’s an active and busy life that she loves.

But after she injured her ankle— no one is sure how — while at camp two years ago, things changed.

Her parents took the injury seriously, and they went from specialist to specialist in Pasco County, looking for relief from her pain and the slight limp she picked up from walking on her toes to favor the leg.

They tried everything from leg casts to physical therapy. Doctors kept telling them there was nothing wrong. Meanwhile, Rebecca had given up cheerleading and physical education classes. At lunch, she would sit on the bench while her friends ran around. Depression and frustration were setting it.

“Her leg just seemed weak like it had never healed properly,” explains her mother, Amy. “I just couldn’t stand seeing her that way. She loves getting pedicures with me, but she didn’t even want to be touched. It’s been hard.”

Her questions eventually led Amy and Rebecca to Paul Benfanti, M.D., an orthopaedic surgeon at Johns Hopkins All Children’s Hospital.

Benfanti didn’t think she needed surgery, but he recommended she see Giovanni Cucchiaro, M.D., director of Pain Services in the Johns Hopkins All Children’s Pain Management Clinic. Cucchiaro figured out pretty quickly that Rebecca was dealing with complex regional pain syndrome (CRPS), a form of chronic pain typically involving an arm or leg. It affects 5 out of 100,000 kids every year. Cucchiaro, who has been treating these kids for decades, has a different approach to managing children with CRPS.

“The treatment for CRPS is physical therapy, but because the child is in pain, they can’t do the therapy,” Cucchiaro explains. “So we slightly numb the leg with Ropivacaine. It has some advantages to other local anesthetics because when used in specific doses, it can induce analgesia — relieve pain — and is less likely to induce weakness in the extremities. In Rebecca’s case, once we took care of the pain, she was able to focus on the therapy and repair the leg.”

For Rebecca, casting the leg had made it much worse. Fortunately, her mother sensed this and was able to take her to several specialists and eventually find Johns Hopkins All Children’s, and ultimately, the solution for her daughter.

“Once I understood her history and examined her, I knew what was happening and our comprehensive team was able to successfully treat her CRPS and get her back to her active life,” Cucchiaro says.

In fact, Rebecca’s medical plan involved four hours of physical therapy per day — made possible by Cucchiaro’s approach — highlighted by an hour of psychotherapy with Will Frye, Ph.D., a pediatric psychologist in the Institute for Brain Protection Sciences who works with the pain team.

“For kids who suffer from chronic pain like Rebecca, treating the whole body and mind is the answer,” Frye explains. “You can’t separate the two. There is always some emotional response to the pain, and we wanted her to address that and manage it.”

For Rebecca, Frye focused on the idea of adjusting to the change in her social experience. Things have changed in her life. Because of less physical activity and difficulty walking due to pain, she was getting bullied a bit. In turn, this caused sadness and reluctance to go to school.

“These kids have been told their pain isn’t real. That isn’t the case,” Frye says. “We don’t question the pain. We just focus on getting you back to where you want to be. We are asking a lot of our patients: That foot hurts, so walk on it. We prep our patients for some pain, and we teach that some pain is helpful — it’s alerting you to know when something is wrong. But our nerve signals don’t always turn off after the injury is gone. This is the case in chronic pain and CRPS. We want kids like Rebecca to understand that there is still some pain, but pain doesn’t always cause more damage once you’ve been cleared by a doctor. It’s OK to address chronic pain and move on with your life. We are reframing the way they think about pain.”

Frye points out that the Johns Hopkins All Children’s Pain Management Clinic offers a strong interdisciplinary program focused on getting kids back to being fully functional.

“There aren’t many programs like ours out there and as we continue to have the success, we are able to help more children with chronic pain,” Frye concludes. “The benefits of having a multidisciplinary team means you have physicians, surgeons, psychologists, therapists, physiatrists and nurses all determining a plan for each child together as needed. We meet together regularly to update and adapt those plans according to patient progress. The reality is, we don’t want these kids struggling with chronic pain. We don’t want them on opioids. We want them functioning and happy.”

Typical treatment for CRPS can take up to eight weeks, Cucchiaro and Frye were able to send Rebecca home after just a week of intense treatment.

“She didn’t want to leave,” her mother adds. “She knew she needed this, and she’s much happier.”

Rebecca will follow up with additional therapy in her own community as needed and her team expects her to do quite well, and soon return to cheerleading and running around with her friends.

Pain Management at Johns Hopkins All Children's Hospital

Pain is complex and is as unique as each child we treat. Whether it is the result of an injury, a chronic illness or another cause, pain can affect all areas of life including school, mood, sleep, family life and everyday activities. The pain management program at Johns Hopkins All Children's Hospital in St. Petersburg, Florida, uses medications or procedures along with therapies such as psychotherapy, biofeedback, occupational and physical therapy solely dedicated to the management of pain.