July 15, 2008 Breakthrough clinic helps kids cope with pain Play video

(Ally Donnelly, NECN) - Thousands of children each year are affected by a mysterious disorder that causes debilitating pain. Because there are no outward signs of injury, the kids complaints are often dismissed as exaggeration or a cry for attention.

As patients and staff at a new pain clinic in Massachusetts know, their pain is real and they can be helped.

Children's Hospital Pain Rehabilitation Center

Even though her face still grimaces in pain, Taylor Mullen is a far cry from the girl who came here six weeks ago.

The 15-year-old San Diego girl suffered a minor karate injury four years ago.

The Mullens say doctors in California thought her Achilles tendon had been damaged. Taylor was casted for 10 months, but eventually went under the knife.

Pain so excruciating, Taylor couldn't walk. She had been confined to a wheelchair for the last year -- even wind on her foot sent her into spasm.

Taylor: the pain was out of control; I've never felt anything like it.

After surgery, six doctors and countless hours of physical therapy Taylor stumbled upon a new website on the Internet. One for the pediatric pain rehabilitation center opening at the Waltham campus of children's hospital Boston. She became one of their first patients.

Taylor has reflex sympathetic dystrophy or rsd. It is a disorder that is not completely

understood by doctors and is relatively rare in children. It usually follows mild trauma like a sprained ankle or minor surgery. Doctor david leslie, who heads the clinic, says kids often experience sensitivity to touch, swelling, changes in skin color -- and most significantly -- debilitating pain.

It's not pain because you injured yourself, it's not pain that's causing ongoing damage to your foot -- it's really a non protective pain -- where the pain signals get turned on, but they don't shut off.

This clinic is billed as the most comprehensive, stand-alone program of its kind in the country. To get into the program, families must have exhausted traditional medical options. Children endure a rigorous schedule of physical and occupational therapy nearly every day for several weeks.

Part of it is a quantity thing...meaning she's getting the amount of pt in her 5-6 weeks here that she would have received in year's time of outpatient therapy.

Doc: we represent probably the last best chance for some of these kids to regain there lives.

Dr. Leslie says only a couple thousand kids are diagnosed with rsd every year -- most of them girls. Here at the clinic, the kids are treated not only physically, but psychologically -- for a number of reasons -- not the least of which is that rsd can be so socially isolating.

Taylor: At this age people don't want to hang out with you if you're the kid in a wheelchair.//12:14:53 This disease won't kill you, but it will kill you inside and it will definitely make you different inside. You're nothing like you were before it.

The individual and group counseling also teaches the kids about pain management and -- in a way -- putting mind over matter. Because our brains are connected to the rest of our central nervous systems, anything happening within our minds could affect the way we perceive pain.

That includes thoughts emotions and other stressors and our psychologists are trained to help kids deal with those types of things.

As we talk, Taylor squeezes a ball of playdoh to distract herself from the pain they burn...up here to my knees burns and then my foot has tingles in it and back of legs very sharp.

Though it's a bit unclear *what exactly works, *something is working for Taylor. The clinic has an exercise called the 100-foot walk, for this petite blonde beauty it has been quite a journey.

I started out doing the crutches, then the walker, then the cane and then one day i can't do it any faster on the cane and they said okay, drop em and walk it on your own...it didn't look pretty, but..laugh...i did it.

It's amazing...you come with doubts...this may not work...i can't believe my daughter is now an average 15 yo girl. It's a miracle.

Taylor seems a bit of a staff favorite. Playing practical jokes and chair racing with dr. Leslie... We're not trying to have any kid walk through the door and give them a sense of false hope, but i think there's very good evidence//that they can get better.

Taylor now nearly attacks the treadmill. She keeps a picture in her line of sight as she runs. It's a photo of her room back in San Diego. It's her talisman of a normal life....all she's ever wanted.

In Waltham Massachusetts, with videographer Dan Ferrigan, Ally Donnelly, NECN.