Jasper’s Healing Journey: Conquering Complex Regional Pain Syndrome (CRPS)

After a painful diagnosis, Jasper learned how to push past Complex Regional Pain Syndrome

In July 2014, my son Jasper suffered a stress fracture in his left heel while doing a Jr. Lifeguard summer program at the beach. He was put in an orthotic boot, but the foot seemed to get worse over time, not better. Eventually it started swelling up like an elephant foot, turned purple, was cold and was very sensitive to touch. On September 23, Jasper was diagnosed with Complex Regional Pain Syndrome (CRPS) at Rady's Children's Hospital in San Diego. 

The pain quickly spread to Jasper’s entire body, with torturous intensity. You could only touch his right index finger, otherwise he would scream like his body was on fire. He was in excruciating pain like I had never seen. We went to the emergency room and ended up spending six days in the ICU before being transferred to the rehabilitation floor and discharged home for outpatient therapies. 

After coming home, Jasper was sent to an outpatient pain program. It involved physical therapy twice a week and home, self-guided, physical therapy and desensitization every two hours. He did acupuncture and biofeedback with a psychologist, and attended pain support group meetings with other children. He remained committed to his therapy, but things got worse.

Jasper complained of pain in his heart, his throat, and everywhere else. Swallowing was excruciating for him.  There were multiple trips to the emergency room, numerous ambulance rides, visits to holistic doctors and chiropractors. We tried it all!  We were terrified and confused. Physicians loaded him with narcotics and sedatives. Nothing was helping him, and it seemed like his condition was getting worse.

Jasper couldn't walk without screaming in pain. Even wearing clothes was excruciating, but he never stopped doing what he was told. He was a warrior like I never knew existed in a young boy. We would visit with his physiatrist who at one point told us that he did too much physical therapy and needed to cut back. This confused us as we were told physical therapy was where the cure could be found.  The last time we saw her she told us he needed to accept this was as good as he was going to get. This was eight weeks into diagnosis. Thankfully, we knew this was not true. 

One day Jasper’s physical therapist, who was constantly researching and asking colleagues how to help us, asked if we would watch a ten minute video during his therapy session. At the time we all felt so hopeless and terrified. We had no idea this ten minutes would change his life forever. 

The video was of a patient named Alissa at the Children’s Hospital of Pennsylvania. Alissa had worked with a physician who had developed an intensive inpatient rehab program for kids with CRPS. The video detailed Alissa’s journey and ended with her running up the stairs like the strong athlete she had been before.

This video gave our family a new-found hope. I wept with joy after seeing Alison’s miraculous recovery. Finally, hope.  

My husband and I decided we must find a program like this for Jasper. The outcomes for patients getting full function back and significantly decreased pain were outstanding. After some research, we found Children's Specialized Hospital in New Jersey. We filled out paperwork and had a Skype interview with Dr. Bentley and the team psychologist that same week. 

Jasper flew across country with my husband Rick while I stayed home to care for our other two boys. Jasper’s healing journey began shortly after his admission to Children's Specialized Hospital in New Brunswick, New Jersey, on November 12, 2015. 

We were given strict instructions that during Jasper’s 6-8 hours of therapy a day, we were not to be in the hospital. If we were seen in the hospital, he could be discharged from the program. It was an important and essential rule to his team. We understood, as we knew the pain he would endure while he was getting well. They didn't need our interference on an emotional level.

The first day started with therapy in the pool. He couldn't take a two minute shower the day before, so I can't imagine what those first two hours were like. We learned that this was his mountain to climb, not ours. He would need to do his therapies with a therapist or nurse practitioner during the day, as well as in the evening alone in his room. My husband and I were humbled by their expertise and tried not to interfere. Dr. Bentley, the therapists, nurse, and psychologist were always honest, kind, and direct. The news they shared with us was not always what we wanted to hear, but it was honest. We would get weekly updates and guidance. More importantly, they taught Jasper the tools to take care of himself and his pain.

There are many aspects of the inpatient program besides the physical and occupational therapies that were instrumental and crucial to Jasper’s healing. Every evening a Child Life Specialist would run programs for the kids. This gave the kids time to develop relationships with other children going through difficult and sometimes similar circumstances. It also gave them some time for some fun away from the pain.  There were visits from NFL football players, music and radio events. They sure knew how to bring fun into the kids’ lives.  

We cannot say enough about the team of doctors, physical and occupational therapists at Children’s Specialized Hospital. Jasper was a hockey player prior to his injury. Once they found this out, his therapists devised a game of hockey as part of his therapy. It was outstanding care on a personal level.  We, on many occasions even saw the Chief Executive Officer and Chief Medical Officer visiting patients, sitting beside their beds and holding their hands, no PR person waiting in the wing.  Their care is top notch, but equally important, so is their compassion. I cannot stress enough how outstanding their compassion for our son was.

Jasper has been home since December 24, 2015. He is doing extremely well in high school, playing hockey and volleyball, and using the tools he learned at Children’s Specialized Hospital to stay healthy. There isn’t a single day that goes by that we don't think of and feel blessed to have been cared for by Children's Specialized Hospital. They are all angels to us