Pain sufferer heads for treatment
For Joseph Martinez, life has been a downward spiral for the past six months, dragging the Torrance teen from a state of normalcy into one of constant, inexplicable pain that has robbed him of an entire school year and left him bed-bound since fall.
But on Tuesday, the 14-year-old, whose plight was detailed by the Daily Breeze on March 25, finally caught a break.
Aided by ambulance crews, the former baseball player and student at the St. Catherine Laboure school was loaded by gurney into a medical aircraft, moaning in pain all the while. The plane was headed for Lucile Packard Children’s Hospital in Stanford, one of a handful of U.S. medical centers equipped to treat children with complex regional pain syndrome, the rare disorder bedevilling him.
Previously, the family’s health-care provider had refused to authorize treatment for Joseph on the grounds that the plan only covered expenses for services rendered within the network, which is limited to the South Bay.
Late last week, however, the health provider – THIPA – had a change of heart. As a result, Joseph and his mother, Susan, boarded the plane Tuesday morning at Torrance Municipal Airport, as five teary-faced members of his family looked on.
“This is the start of the journey he should have been on five months ago,” said his grandmother, Virginia Dilliner.
Dilliner added that just seven months ago, when she came to visit the family from her home in New Mexico, Joseph was well enough to answer the door.
“By January, he couldn’t even walk,” she said. “Everybody misses him so much.”
Afflicting between 200,000 and 1.2 million Americans, complex regional pain syndrome is characterized by severe and relentless pain due to misfiring nerves, which in turn send pain signals to the brain, according to the Reflex Sympathetic
Dystrophy Syndrome Association.So extreme is the misery of the sufferers that the association once used the following slogan to describe the condition, formerly known as reflex sympathetic dystrophy: “If hell were a medical condition, it would look like RSD.” (In 2008, the association changed the slogan to “Take Flight with Hope.”)
In Joseph’s case, doctors within his network were perplexed by his symptoms. Some erroneously suggested it was psychological – pain experts say it is neurological – and others prescribed heavy-duty pain medications such as methadone, which briefly turned him into an addict.
Meanwhile, Joseph’s classmates organized a fundraising drive. Since the March 21 launch, they’ve raised $26,000.
“We are still working to raise more money, because we know how expensive the treatment is,” said Kathleen Gorze, the school’s principal, adding that the treatment is estimated to cost $17,000 a week. “And we know insurance isn’t going to cover it all.”
Gorze said she has been amazed by the public outpouring.
“We’ve had some people walk in off the street with $40 and say, `Sorry I can’t give more,”‘ she said.
Among the donors was a 3-year-old girl who went door to door in her neighborhood with her parents to raise money for the family. The girl recently came to the principal’s office to deliver her yield: $21.50.
As for the medical provider, it reversed course in part due to the wheedling of Dr. Lonnie Zeltzer, director of the pediatric pain program at Mattel Children’s Hospital at UCLA. Zeltzer was the 19th doctor the family had visited, and the first to tell Joseph in no uncertain terms that she believed him, the family said.
On Tuesday, Zeltzer said most insurance companies and health-care providers do not understand complex regional pain syndrome.
“They think it’s psychological, not real pain,” she said Tuesday. THIPA, she said, was the same way. “It’s not that they were evil, it’s just that they didn’t understand.”
Fortunately, Zeltzer said, the director of the medical group had previous training in pain management, and so understood the gravity.
“She was an advocate within the system, and explained it to the CEO,” she said. “She needed a lot of documentation from me.”
Zeltzer said that by the time Joseph came into her office in January, he’d gone for too long without proper treatment.
“When I saw him in the waiting room, he was screaming; he kept apologizing between the screams,” she said.
Because Zeltzer’s program doesn’t have an in-patient component, she can’t treat him. She said she regularly sends children with the disorder to the Stanford program, which is headed up by Dr. Elliot Krane.
“I’ve referred many patients to him, and they’ve all gotten better, even though they were train wrecks when they first got there,” she said. “He’s superb.”
Zeltzer said she expects Joseph will stay in Stanford for at least three weeks. There, he will undergo intensive physical therapy, with specialists reteaching him how to walk. Psychologists and psychiatrists will help him with depression and anxiety.
Complex regional pain syndrome tends to be triggered by a traumatic event, such as a car accident or medical procedure. In Joseph’s case, the family believes the catalyst was an episode of food poisoning that left him with flu-like symptoms.
There is no cure for CRPS, but the disease can be slowed, according to PubMed Health, a consumer health website produced by a division of the National Institutes of Health.
The Martinez family is a single-income household, with Susan holding down a job as a project dispatcher at Triumph Aerostructures in Hawthorne. The father, Justin – who himself suffers from a spinal disease – is Joseph’s primary caretaker during the day.
On the airport runway Tuesday, Justin’s three siblings, father and grandmother hugged tearfully as the plane carrying Joseph and Susan roared away.
Matthew, the eldest, said it seems like yesterday when he’d come home from school to find his smiling brother in the living room, playing video games such as “Call of Duty.”
“He’s really good at it,” said Matthew, who will attend California State University, Long Beach, as a freshman in the fall. “Now he’s just moaning and screaming.”
Justin said he has been overwhelmed by the community’s response.
“The economy’s bad, people are jobless are out there,” he said. And yet “we have people out there (who say) `I can’t afford to send much, here’s $20.’ … It’s just amazing. It feels good.”