CRPS: A Parent’s Perspective
By Kris Filon

If you are lucky or persistent enough to have reached the point of your child being diagnosed with CRPS, congratulations; it is not an easy road to travel.

Our 12-year-old daughter, Jessica, was diagnosed with CRPS in November 2001. Her condition developed as the result of a leg injury one month earlier. X-rays and bone scan did not show any structural damage, however, her pain level continued to increase after the injury rather than to subside. She was unable to bear weight on her leg and ended up spending over four months on crutches and in a wheelchair. Due to the negative test results, her increased pain and other symptoms, and our commitment to push through doctor appointments and insurance company hassles, we went to Dr. Ronald Hadden, a pediatric neurologist, in an effort to determine if there was some type of nerve damage. He was well versed in CRPS and provided us with a diagnosis and initial treatment plan.

We began treatment with pain medication, a TENS unit and physical therapy three days per week. However, as the weeks progressed, our daughter’s pain level increased. As we became more educated regarding the condition, our level of concern also increased on how slow her progress was. We became aware of the progressive stages of the condition, the increased risks of permanent physical damage and reduced quality of life, and how critical it was to get her walking again.

Because Jessica was making minimal progress in local physical therapy we were told of a comprehensive, multifaceted pediatric pain clinic at Seattle Children’s Hospital. We were convinced Jessica needed to be treated there when the neurologist said, “If it was my daughter, I’d fight to get her there.” We did end up obtaining insurance company approval to have her treated in Seattle.

Jessica and I lived for four and one half weeks in Seattle (our home is in Arizona). She spent the first week as an in-patient and the remaining time as my roommate in hospital-sponsored family housing. Her treatment each day included six hours of intense therapy. On the first day of her treatment, she was using only one crutch, by day two she was walking (Her crutches were kept under lock and key until we flew home.). The intensity of the program was a challenge for both Jessica and us. The pain levels she has experienced have been significant, and although her pain is not gone, she has her function and her quality of life back. She is committed to a daily exercise program and we have high hopes that her pain will continue to diminish.

The level of professionalism, the commitment to the children and the effectiveness of the clinic in Seattle are top notch. Dr. David Sherry is the head of the Rheumatology Department and manages the clinic that has successfully treated hundreds of children from all over the country (there is typically a waiting list for this treatment program). I would only hope that more of the medical community around the country would become better versed in CRPS and more progressive in truly effective treatment.

Editor's note: Currently, Dr. Sherrry is working at Children's Hopspital in Philadelphia.

You may purchase a DVD about his treatment program by visiting www.childhoodrnd.org

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