05/07/2013 10:53 am ET Updated Jul 07, 2013

When Pain Becomes the New Normal

1,735 days and counting. That's how long our son, a sensitive, loving and talented 15-year-old boy, has been in the grips of debilitating, life-altering and totally consuming, neurological pain. That's about the best way to describe what he has. It's officially called CRPS -- complex regional pain syndrome. In his case, a suspected broken ankle from a fifth-grade soccer injury began his nightmarish journey. Initially, his complaints of severe pain, even while his foot was immobilized in a cast, were dismissed by his doctors. "Everything's fine," they said. As it turns out, keeping his foot still, proved the worst thing possible as it only exaggerated the symptoms and heightened the pain.

In simple terms, our son's nerve endings are misfiring, sending and amplifying pain signals from his foot to his brain which are, in turn, being relayed back and around in what is the equivalent of a neurological pain loop. As one leader in the field described it, after the initial injury heals, pain itself becomes the disease. It is difficult to diagnose and equally elusive to try and treat.

The source of the pain is neurological but there are physical changes. His foot often becomes discolored and cold to the touch. It swells and the skin takes on a shiny hue. Our son says doctors have one thing right -- stroking it with a feather feels like blasting it with a blowtorch. The protocol under the UCLA Pediatric Pain Program is rigorous -- physical therapy to desensitize the area, bio-feedback, and months of trial-and-error prescriptions of medication -- not for the pain but for some of the symptoms. Treatment also includes psychotherapy because the intense, searing pain causes hopelessness, depression and anxiety, which further amplify the cycle.

Our latest plan of attack, and our latest hope for a reasonable life for our son, is a program at Packard Children's Hospital at Stanford University. It is one of just a few facilities in the entire country that specializes in this syndrome. It involves several weeks of exhaustive outpatient therapy, which has apparently gotten tremendous results for many patients. The therapy is painful and it is costly. We are awaiting word that our son has been accepted.

I have learned one difficult lesson -- watching your child suffer is a parent's worst nightmare. Even into adolescence, our boy looks to us to make things better. The fact that we can't, no matter how hard we try, tears us up inside. We often cry. We don't sleep. We worry. We hope and pray. That's our new normal.

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