Battling the pain
Recovery from painful RSD has has Dublin girl and her family doing backflips
By Barry Caine, STAFF WRITER
CARLI CAUCHI is one of the lucky ones. Less than a year ago she couldn't walk. The pain in one foot was excruciating.
The slightest touch "felt like acid" and she had to sleep with her leg up in the air.
"I was very, very, very cranky," Carli says. "It hurt really bad. It was always throbbing."
Now the sprightly 12-year-old is almost all smiles. She's back competing in gymnastics and roller-skating with friends.
"We're just so fortunate," her father, Jerry, says.
Carli has RSD, Reflex Sympathetic Dystrophy. It's a debilitating nerve-related syndrome, not a disease. The pain is constant. It does not go away. If not diagnosed and treated early, ideally within three to 11 months, RSD usually worsens. There is no cure.
And it can spread.
After Carli's foot began to heal, the pain moved to her right hand. A student at Wells Middle School in Dublin, she remembers the moment the misery began.
It was a Sunday in mid-January. She and her mother Bobbi were lying on their living room floor watching "Extreme Home Makeover."
"All of a sudden I started to cry," Carli says. "My mom thought it was because of the show, but it was because of my foot."
Carli's doctor recognized the problem immediately, not an easy thing since symptoms vary and RSD remains a stranger to many medical professionals.
The diagnosis started a surreal odyssey that took the Cauchis through 17 other doctors and specialists in 21 days. Not all of the specialists were special.
"They said, 'It's all in your head,'" Carli recalls. "There's no way you can have RSD. ... I felt sad because no one was believing me."
The syndrome strikes more women than men. Although all ages are susceptible, most cases happen with people between the ages of 20-50.
One neurologist estimates the number of Americans suffering from RSD at several hundred-thousand.
"You have to listen to your kids when they tell you they're sick," Jerry says.
He's been told that RSD is expected to strike one out of every 160 children because so many parents are involving them in competitive sports at an early age.
The syndrome can start from a fall, bump, sprain, twisted ankle, minor surgery, or something as mundane as a dog pulling on its leash.
When a bone scan confirmed Carli's RSD, doctors put her on medication. She had 12 surgeries (to insert small devices under the skin to block sympathetic nerves). One temporarily left her numb from the waist down. In all, the Cauchis spent time at five hospitals.
"The first day, you believe you're going to get it fixed," Jerry says. "The second or third day you have to adjust your schedule.
"A numbness comes over. 'This is my life, all there is.' You're going through the motions at work. It's always in your mind."
Jerry ran the family business, Cauchi Photography in Dublin, while Bobbi took time off.
"My job is Carli," she says.
At the hospitals, one or the other was always with her.
Jerry kept friends up to date with his blog, cauchi.com/carlisblog.
As Carli might say, the family got "very, very, very" lucky at Lucille Packard Children's Hospital in Stanford, the fourth facility they visited. By then the RSD had spread to Carli's hand — after her ring finger popped as she reached for a laptop.
"Again they're thinking I'm bogus," Carli says about the emergency-room experience. "They said, 'You're overreacting. It's not possible for RSD to manifest so quickly.'"
Her father says, "You have to make an awful lot of noise to get people's attention and you have to be constant and militant about it. Parents as advocates for their children cannot be overstated."
A savvy Stanford doctor put the Cauchis in touch with a highly touted program at Children's Hospital in Seattle. The selective facility takes two children at a time for a two-to-four week period.
Before sessions started, the Cauchis weaned Carli off all drugs except for one painkiller. At the hospital, they put her on an anti-depressant. And they worked her hard. The regimen included bike, treadmill, swimming, yoga, crab-walking and basketball. Bobbi describes the scene as "extensive physical therapy, a boot camp mentality.
"You walk in in the morning, get a schedule for the day. You're allowed to meet (your child) for lunch but you're never allowed to see anything."
Carli began to feel better after two weeks.
Seven months and $550,000 in medical bills after the RSD's onset — the insurance company covered the bulk but claims still come in — the Cauchis are cautiously optimistic.
"They told me if we can keep it away for six months after the program, 96 percent of the time it won't come back," Bobbi says. The six months is up in early February.
Carli still feels some pain. On a 1-to-10 scale, 10 being untenable, it's usually a 1 — but it can jump to a 5. When her foot hurts, she often climbs back on the exercise bike and works out until the pain's negligible.
Another change: When someone wants to shake hands, she offers her left. It's her dad's idea. Some people squeeze hard out of habit. Carli appreciates the tip. In fact, she appreciates just about everything these days.
"I'm lucky, first because not a lot of kids get to go to Washington," she says after running downstairs with a backpack containing her schoolwork. "I'm lucky to have friends and parents like I have.
"Third, everyone was really nice to me most of the time. And I'll probably not have this anymore, unlike most people."
For information on RSD, visit the National Institute of Health Web site at http://health.nih.gov/topics.asp/R and click on reflex synthetic dystrophy.
E-mail Barry Caine at firstname.lastname@example.org, call (925) 416-4806 or write c/o 4770 Willow Road, Pleasanton, CA 94588.
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Thursday, October 05, 2006
Battling the pain