Taking antibiotics every day is the most effective way for women to prevent urinary-tract infections, followed by — in order of effectiveness — monthly acupuncture treatment, daily cranberry pills and daily estrogen therapy, according to a first-of-its-kind study by researchers at Los Angeles Biomedical Research Institute near Torrance.
The report, which will be published in the Wednesday issue of the journal Clinical Infectious Diseases, is a comprehensive analysis of previous studies on the various preventive treatments, which have been investigated in isolation but never in comparison to one another in this manner.
“The purpose of this is to synthesize the literature,” said Dr. Loren G. Miller, an investigator at LA BioMed and the study’s lead researcher. “There have been dozens and dozens of little studies, but nothing that has taken the studies together and looked at them in a more holistic and global way.”
The review comes amid growing concern about the threat of antibiotics resistance, fueling interest in other strategies for preventing the infections.
Miller said he was most surprised by the apparent success rate of cranberry pills, a widely known folk remedy often viewed with skepticism in the medical establishment. But he cautioned that high-quality research on this preventive measure is in short supply. Even more scant are reputable studies on acupuncture; researchers at LA BioMed found just two, both conducted in Sweden, Miller said.
“I was unaware acupuncture was even recommended or tried for urinary-tract prevention, let alone shown to reduce infections,” he said.
Every year, millions of women suffer from urinary-tract infections, resulting in some 6 million outpatient visits and 479,000 hospitalizations nationwide. Often brought on by dehydration, sexual activity or pregnancy, the infections produce symptoms that include a burning sensation when urinating, back and rib pain due to stressed kidneys and a sense of having to urinate often without the ability to do so.
About half of women suffer at least one urinary-tract infection in a lifetime. About a quarter who experience one will endure a second within six months, said Miller, who also serves as a professor of medicine at the David Geffen School of Medicine at UCLA.
Women are more susceptible than men because the urethra tube separating their bladders from the outside world is much shorter, providing less of an obstacle for the bladder-bound bugs.
The analysis at LA BioMed found that women who took antibiotics to prevent infections had the highest rate of success. The recurrence rate for this method was 0.4 a year. (An annual recurrence rate of 3.0 would mean the treatment has no measurable effect.)
The next most effective method, acupuncture, demonstrated a recurrence rate of 0.7 a year, though this number came with the caveat about the shortage of dependable studies. Estrogen therapy — which applies only to post-menopausal women — and cranberry pills both reduced the recurrence rate to 1.1 per year.
Miller said the problem with the cranberry method is that it is not standardized. The difference between supplements and juice isn’t widely studied, for instance, and the amount of concentrate varies widely by brand.
The researchers also looked at a fifth method, known as self-diagnosis and treatment, in which women take antibiotics without visiting the doctor only when they detect the symptoms of an infection.
Although this approach led to no discernible decrease in the recurrence rate, it was associated with the highest quality of life of all management strategies.
“If I was a woman with this, I would probably do the self-treatment,” Miller said. “I wouldn’t want to be bothered with going to the doctor. But everybody is different. Some say, ‘I just never want that infection again.’ ”
The LA BioMed review did not look at another emerging treatment that involves replenishing the body with naturally occurring bacteria to ward off infections. This can be done by eating yogurt, but Miller said a more direct approach is to apply the good bacteria — in the form of a lactobacillus suppository — directly to the vagina.
“There aren’t enough high-quality studies to model it at this time,” he said of the method, which he called promising.
In recent years, patients have been increasingly reluctant to take antibiotics for fear that overusing them could build resistance.
Indeed, scientists have found resistance in more infections — including some strains of urinary-tract infections caused by E. coli, a gut bacteria and a common culprit. One troubling study by the University of Manitoba put the resistance rate for trimethoprim/sulfamethoxazole, an antibiotic commonly prescribed to treat urinary-tract infections, at 21 percent, according to WebMD.
The LA BioMed study also sought to compare the costs of the various treatments. On average, patients paid $140 a year out of pocket for the antibiotics and nearly $950 a year for acupuncture. The discrepancy owes largely to how antibiotics are often covered by health insurers, whereas the cost for acupuncture is typically borne entirely by patients.
The meta-analysis reviewed six studies on the preventive effectiveness of antibiotics, four on cranberry pills, five on estrogen therapy and two on acupuncture.
Ultimately, Miller said he doesn’t recommend any particular method over another.
“Because patient preferences are very diverse, we laid out the benefits and costs of each approach to help the patient and provider choose an approach that best suits the patient’s lifestyle and preferences,” he said.
While it’s true young entrepreneurial dreamers have all their lives to start that first business, some believe there’s no time like college — or the years immediately after — to take the plunge. One of those believers is Byron Myers ’01, and he should know.
The 2001 UC Santa Barbara graduate is one of three young founders of a business that began as an innocent idea for a UC Santa Barbara entrepreneurial competition.
Now, the three UC Santa Barbara alums own a company that generates up to $15 million annually, pays a handsome salary and employs 50 people. And here’s the kicker: Myers and the two others — Ali Perry ’03 and Brenton Taylor ’03 — are all still in their 20s.
Called Inogen, the Goleta-based business manufactures a portable oxygen concentrator for lung-disease patients. The suitcase-size oxygen generator is designed for those who suffer from Chronic Obstructive Pulmonary Disease, which is usually caused by smoking and is the fourth leading cause of death in the United States.
Inogen One is a lightweight answer to bulky stationary systems that tether people to their homes and air tanks that need to be refilled every couple hours.
Given their status as a local success story, the Inogen One founders are often invited to speak in classes at UC Santa Barbara. Myers, the company’s 29-year-old director of marketing, likes to encourage students to strike out on their own right out of college.
“You don’t have much to lose — no mortgages to pay or kids to feed,” he told Coastlines. “Now is the time to see if you can make something happen.”
As the trio has shown, you also don’t need a degree in engineering. Myers and financial controller Perry were math and econ majors; technology director Taylor was a biology major.
To date, the company has sold 20,000 units, which fetch between $4,000 and $5,000 apiece. The young entrepreneurs wracked up numerous accolades, including mention in Inc. magazine’s annual “30 Under 30” issue profiling “the coolest young entrepreneurs in America” of 2007.
The success of Inogen One underscores the power of a simple idea, especially one that offers a solution to a common frustration.
It all began when the college friends decided to enter a contest that is now known as the New Venture Competition hosted by UC Santa Barbara’s Technology Management Program, which offers courses about the process of commercializing new technologies.
It was near the holidays, and the contest didn’t get under way until after winter break. The group went home to their respective families and ruminated.
At the time, Perry’s octogenarian grandmother, Mae Stoneman, was suffering from COPD and had just been prescribed an oxygen tank. Stoneman lamented how this could prohibit her from embarking on some of her dearest pursuits, such as attending plays and going on cruises.
At 55 pounds, the device that generated the oxygen for her portable tank was the size of a mini-fridge, and could not be transported. The thought of running out of oxygen outside the house — say, during a traffic jam — was terrifying.
Then came the million-dollar idea: Why not design a portable device that does it all?
With this in mind, the group set about crafting the concept for the competition, which requires a business plan and a good pitch. To say they impressed the judges would be an understatement of the highest order.
Odell and CooperThe judges not only awarded the team first place, they encouraged the students to give it a real go. What’s more, two judges continued to work with the students to help them refine the idea.
Then, one day, during a meeting at a coffee shop, one of the judges, UC Santa Barbara alum Steve Cooper ’68, made an announcement.
“He said, ‘We’re at a point now where I want to invest in your company,’ ” Myers recalls. “That was a surprise. Then it became much more serious.”
Cooper — currently the CEO of Skyler Technologies — became the company’s first chairman. The other judge, Kathy Odell, became the CEO. (The company recently hired a new CEO, Raymond Huggenberger.)
Using Cooper’s $200,000 investment, the company created a prototype. By fall of 2004, the device was ready to roll off the production line. At 10 pounds, the oxygen concentrator — which is designed to last five years — can be carried like a suitcase, complete with a lightweight cart on wheels and a retractable handle. In 2005, the Federal Aviation Administration approved its use on commercial airliners.
The first model off the line went directly to Stoneman, who soon after hopped aboard a cruise ship, Myers said. She used the device for three years before dying last year. She was in her late 80s.
Myers, who graduated two years before his younger business partners, acknowledged that the company has felt the sting of the recession. Although he declined to reveal recent revenue figures, the 2007 article in Inc. magazine said the company at the time had 100 employees.
Still, Myers said he is very optimistic about the future, and added that the push now is to go public. He also plans to stay with the company for a long time.
“We’re not looking to just get acquired quickly,” he said.
Meanwhile, despite his success, the San Diego native is still reluctant to purchase a home in Santa Barbara, where median price of a home in late March was $715,000, the highest in California.
“I was never comfortable with the housing prices here,” he said.
So for the foreseeable future, Myers and his partners will continue to work on their business, strive to take it public, speak to students in the Technology Management Program, and pay rent.
Three years ago, Francisco Sanchez of Torrance was working as a train welder at the Port of Los Angeles when he inexplicably passed out and fell backwards into the empty boxcar six feet below.
His head slammed into a metal bar on his way down and banged against the floor of the train. His brain began to bleed. He was rushed to St. Mary Medical Center in Long Beach, where, despite an emergency craniotomy, doctors expected him to die.
When Sanchez awoke from his coma nearly three weeks later, surrounded by friends and family in the hospital, he struggled to speak, and was blind in his left eye. He tried to write his family a note, but it came out as gibberish.
Although his speech soon returned, Sanchez had to relearn a slew of frustratingly simple words, like “knife” and the number “three.”
And how far he’s come.
Earlier this month, the 36-year-old Torrance native graduated from ITT Tech in Torrance, where he specialized in computer drafting and design. Sanchez enrolled two years ago against the advice of his doctor, who feared he wasn’t cognitively ready for such a rigorous mental workload.
He finished second in his class of about 40 students with a 3.9 GPA. At the graduation ceremony on July 8, Sanchez picked up not only his AA degree but also a salutatorian certificate. Now he’s going for his bachelor’s in the engineering division of ITT’s computer drafting program.
“I was knocking on the door of the Grim Reaper,” said Sanchez, whose closely cropped hair reveals the line from a question-mark-shaped scar covering the left side of his head , tracing the path of the incision made on that fateful day – May 21, 2007 – to release the pressure from the gathering blood.
“But I was positive from the beginning. I had hope – I didn’t look at the negative side. As soon as you become negative you become just a blob, sitting there.”
Sanchez is among about 700,000 Americans who suffer traumatic brain injury every year, according to the Brain Injury Association of America. The victims tend to be young; most are 15 to 30 years old. Many cases are the result of blunt trauma, such as car accidents, hard falls or acts of violence.
But sometimes the tragedy creeps up quietly in the form of an aneurysm, stroke or even the occasional sinus infection gone awry.
Almost always, the damage and resulting debilitation is largely permanent. But, as Sanchez has proved, that doesn’t preclude the injured from making significant accomplishments.
His story demonstrates how a person’s life can come crashing down in an instant, but also underscores the power of determination and the strong support network of a loving family.
“I personally don’t let him say he can’t do something,” said Andrea Sanchez, his wife of nearly 12 years, with whom he has had two girls, ages 4 and 10. “I won’t let him say, ‘I can’t or I won’t or I shouldn’t.’ I’m like, ‘If you’re not fine, then I’m not fine.”‘
As for Francisco, the injury fueled his determination to not only heal, but grow. Until now, he’d never obtained any formal schooling after graduating from Narbonne High School.
New skill needed
In a sense, his hand was forced. Shortly after Sanchez returned home from the hospital, he suffered two massive seizures. This disqualified him from ever again plying his trade, which required working from tall heights. He needed to find a more suitable skill.
Sanchez, the son of an aerospace engineer, recalled excelling in a high school drafting class. This led him to enroll in the computer drafting and design program.
Meanwhile, he still needed rehab. Many who suffer head trauma opt to first rehabilitate and then move on to rebuild their professional lives. Sanchez chose to do both simultaneously.
About 21/2 years ago, he enrolled in the Acquired Brain Injury program at Coastline Community College in Costa Mesa. He concurrently enrolled at ITT. For two years, he attended the former by day and the latter by night.
Progress didn’t come without a struggle.
For starters, the accident seems to have altered Sanchez’s personality.
An outgoing man with an average build, amused eyes and a ready laugh, Sanchez said he’s always been the kind of guy to chat up a stranger in line at the grocery store. But ever since the incident, he and Andrea said, Sanchez has occasionally exhibited the tendency to grow overly excited. Not in an angry way, but sometimes in a manner that suggests he is anxious or frustrated.
“I get excited for whatever we’re going to do, so I start talking fast or start talking loud,” he said. “And my wife’s like ‘Hey, don’t yell at me!’ I’m like ‘I’m not yelling at you.’ I can’t sense myself when I’m being loud to them until they tell me. So I tell my kids: tell me. Don’t just walk away – I need the information from them to help me.”
Personality changes aren’t unusual among victims of brain injury .
Posted on the website for the program at Coastline Community College is a good-natured essay by recent graduate Scott Newbry, who, after a devastating motorcycle accident, came to with a newly acquired Southern accent.
Another major issue is money. Sanchez’s accident had the effect of cutting the family’s income in half, even though Andrea Sanchez says their insurance company has been very cooperative. One of their cars was repossessed and the family had to move into a smaller apartment.
Andrea Sanchez, an office supervisor at South Bay Orthopaedic Specialists Medical Center in Torrance, started working six days a week instead of five. And while workers’ comp paid $10,000 towards his education, tuition ran $20,000 a year.
Scariest of all are the eerie health complications that can accompany a serious brain injury .
One night, Sanchez was studying for a test when he noticed a numbness in his hand. It slowly spread to his fingertips, then crawled up his arm and into his neck.
“Then I started feeling half of my face. Numbness,” he said. “And then all of a sudden, I started feeling it in my tongue, and in my mouth and I was like, you know what, it doesn’t look right.”
To be safe, they went to the hospital. Doctors figured he’d had a stroke, and increased his seizure medication. He hasn’t had another episode since, though the heavy dosage makes him tired.
But Sanchez – who regained the sight in his left eye after surgery – persevered and plowed through, in spite of the splitting headaches and the stress of studying in a house with two small children.
“He was a very pleasant student,” said Frederick Poblete, the dean at ITT. “He did very, very well academically. And he had very good attendance.”
Survivor program grows
Celeste Ryan, co-chair of the Acquired Brain Injury program at Coastline, said advancements in treating aneurysms, strokes and brain tumors – as well as victims of car crashes – have had the unintended effect of boosting the number of survivors who suffer from severe brain injuries .
When the Coastline program first opened in 1978, it served 19 students. Last year, it accommodated 230.
The idea of the program isn’t to heal the brain – oftentimes, Ryan said, the damage can’t be undone. Instead, the goal is to help students cope with their newfound disabilities. Students are taught to use personal digital assistants (PDAs) to keep track of appointments, for instance.
“They forget all the things you and I do, but the incidence is much higher,” she said.
Sometimes, the impairments are tragically severe. A person, for instance, might lose track of time and spend hours in the bathroom getting ready for work. The program might then encourage him or her to equip the room with a timer.
Usually, victims of traumatic brain injury have no trouble remembering skills acquired long ago, Ryan said. But forming new memories can prove daunting.
For this reason, she said, Sanchez’s case is remarkable.
“Francisco is an extremely hard worker,” she said. “He also has a very exceptional support network – there’s a high incidence of divorce after a brain injury .”
The bond between Francisco and Andrea Sanchez runs deep. Both attended Narbonne High, though Andrea – whose maiden name is Waack – is six years his junior. They married when she was 19 and he was 25.
She still remembers the fateful day all too vividly.
She’d prepared his lunch – leftover stir fry – and called to say hello while he was eating it. Not long after, during her own lunch hour, she got a call from his boss, saying there had been an accident.
For his part, Sanchez has no memory of that day or the day before. Andrea Sanchez jokes that this a good thing, because it was the first batch of stir fry she’d ever made, and it turned out terrible. The day before the accident, he tried to reassure her at the dinner table.
“He said, ‘No, it’s really good.’ I said, ‘No it’s not, but I’ll make you lunch tomorrow.’ That’s what he ate for lunch.”
Yael Kozar of Rolling Hills Estates was getting ready to take her two young daughters for a walk a decade ago when she gave them both a bite of a peanut butter-flavored power bar. Her 18-month-old daughter spit it out, and Kozar figured she just wasn’t a fan.
During the walk through the neighborhoods of Westchester — at the time their home — the little girl became ornery. Then the sniffles came on, and Kozar wondered if she’d caught a cold. Moments later, Kozar took a look at her daughter and was horrified: one of her eyes was swollen shut and she was wheezing.
The next thing Kozar knew, she was in the car, gunning it for the hospital in Marina del Rey. By the time Kozar came running through the emergency room’s sliding glass doors, clutching her daughter, the baby girl was covered in vomit and was barely breathing.
“They saved her life while I was sitting with her on a hospital bed,” she said. “You don’t recover from that as a mother.”
That is how Kozar and her husband, Andy, came to learn that daughter KD is deathly allergic to peanuts. It is also what prompted Kozar to shelve her career in television and becoming Southern California’s most indefatigable advocate for deadly food allergies.
Last week, a tragedy put the peanut-allergy issue in the national spotlight. After eating a peanut given to her by a friend on the playground, 7-year-old Amarria Denise Johnson of Chesterfield County, Va., died of a severe allergic reaction. The school did not carry epinephrine injections, better known as EpiPens, which deliver via needle a dose of an adrenaline-like substance, thereby neutralizing an anaphylactic shock that can claim a life in a matter of minutes.
The tragedy is Kozar’s worst nightmare, and underscores why she has become such an outspoken advocate.
Once a producer for shows like “American Journal” and “Hard Copy,” Kozar now travels around Southern California to give presentations to groups; chairs an annual Los Angeles fundraising walk for the Food Allergy and Anaphylaxis Network; heads up a South Bay support group on anaphylaxis prevention; and puts her television skills to use producing podcasts about food allergies. All for free.
“We lose a child every other day in this country,” she said, referring to food-allergy anaphylaxis deaths. “This doesn’t count the ridiculous number of children that land in the ER fighting for their lives and also the near misses that 15 million Americans with anaphylactic allergies experience.”
The peanut issue is what eventually brought the Kozar family to the South Bay. About three years ago, seeking a safer school setting for her daughter, they moved to the Palos Verdes Peninsula, where the schools are exceptionally vigilant about peanut allergies.
For starters, the cafeterias in Palos Verdes Peninsula schools are completely nut-free. That means no food with peanuts, walnuts, pistachios or any kind of tree nut. But the schools on The Hill don’t stop there. This year, the district also banned corn nuts and pretzel rods, not because they contain peanuts but because they aren’t manufactured in a nut-free environment.
By contrast, the school the family left behind in the Los Angeles Unified School District had proposed putting peanut butter and jelly on the menu every other week.
“The thought of 530 kids having peanut butter and jelly sandwiches for lunch — it would have made it impossible for my child to dodge those bullets,” she said.
Palos Verdes Peninsula is also among the only school districts in the nation to have a policy in place for allergic reactions to food allergies.
“At the beginning of the year, every family signs a waiver which allows the administration to use an EpiPen on their child in case of emergency,” she said.
The district’s attention to this issue may have something to do with how the community has been forced to cope with its own peanut-related tragedy. In 2004, Palos Verdes Peninsula High student Laura Keiko Benson died on a church trip after eating a Rice Krispy treat that contained peanut butter.
“She didn’t get to her EpiPen in time,” Kozar said.
Over the past couple of decades, the prevalence of people with peanut allergies has increased a dozenfold, to roughly 2 percent of the American population, said Dr. Lawrence Sher, who specializes in pediatrics and allergies in Rolling Hills Estates. About 5 percent of all Americans — and 8 percent of children — suffer from a serious food allergy of some sort. Science has yet to find a cure, according to the Centers for Disease Control and Prevention.
“This is the reason why having groups such as what Yael is involved with is good,” he said. “People have so many questions.”
About five years ago, Kozar and Sher joined a statewide effort to push through a state law requiring all California schools to carry at least one EpiPen in the nurse’s office. It failed because legislators wanted more information. Now, a similar effort is under way at the federal level.
In the meantime, families grappling with the condition are on their own.
KD Kozar is now 11. Her last episode occurred at a restaurant in Westchester four years ago, and it was a bad one. After taking a bite of the black beans on her father’s plate, her throat began to close up.
“Mom, I’m scared,” she told Yael, hands clutching her own neck. Her mother administered the EpiPen in the girl’s leg, but it didn’t seem to help. KD ended up spending a week at Mattel Children’s Hospital at UCLA.
In three days, she had four anaphylactic reactions — that is, allergic reactions doctors consider deadly.
On top of that, KD experienced scarring in her esophagus, and ended up returning to the hospital for surgery to fix the problem.
At the restaurant, the waiter had assured the family that their meals would be nut-free. But as it happened, a chef had been experimenting with a new recipe that involved putting crushed peanuts in a sauce. The family sued the restaurant and won.
After that episode, while lying on what was almost her deathbed, KD resolved not to let her peanut allergy stop her from leading a normal life. She goes to a public school, hangs out with friends, rides on passenger planes — which can be a scary experience — and even plays hockey. But KD can never let her guard down.
“You just have to be cautious about what you do and what you eat,” the girl said. “It makes you a little neurotic. It’s like having night vision. When you look around you and see someone with peanuts, you stop and just kind of blank out a second, and think: `What do I have to do to get away from this.”‘
On the Web
To watch Yael Kozar’s Anaphylactic Allergy Podcast, go to http://bit.ly/wWp7qB.
For Joseph Martinez, 2012 is already shaping up to be a thousand times better than 2011.
The 14-year-old Torrance resident has missed more than a year of school due to a mysterious disorder that had him writhing 24/7 in chronic pain from head to toe, rendering him bedridden and immobile.
Now, thanks largely to the generosity of South Bay donors and Daily Breeze readers, he is back to riding his bike, walking his dog, kicking a soccer ball around with his cousins and playing video games with his siblings. Soon, Joseph will be tackling his next major hurdle: returning to school.
“I can walk now, I can talk, go around, go outside, I can interact with my family — just a lot better,” he said, during a recent meeting with a reporter at a coffee shop with his parents.
Joseph’s story is an illustration of the maddening complexity and mysteriousness of complex regional pain syndrome (CRPS), which has bedeviled him and up to 1.2 million other Americans. It is also a sort of medical community David and Goliath tale, pitting the methods of an unorthodox doctor against those of an established institution.
As Joseph and his parents describe it, the pain was so severe that the sound of footsteps in the hallway outside his bedroom at home could set off an episode of moaning and crying. The situation left him unable to shower, eat, walk or even play video games without experiencing extreme pain. It also left him addicted to morphine, methadone and other pain-killing drugs prescribed to him by baffled doctors with good intentions.
After close to a year of inactivity, he temporarily lost the use of his left arm, which had atrophied and grown limp. (Now, it is back to normal.)
For a while, it appeared the Martinez family had found salvation in Lucile Packard Children’s Hospital in Stanford, widely believed to be among just a handful of U.S. medical centers equipped to treat children with complex regional pain syndrome.
But in late April, three weeks into their stay, Joseph’s parents made a decision that many found to be ill-advised: They pulled their son out of treatment, which had estimated costs of $17,000 a week that were fully covered by insurance.
The family devised a new plan that involved traveling to Texas to see a podiatrist — a foot doctor — who some have come to see as a kind of chronic-pain miracle worker. That podiatrist, Dr. Donald Rhodes, has invented a contraption that has yet to earn either the respect of the medical establishment or the approval of the FDA, but over the years has turned many patients into fervent believers. In marked contrast to the Stanford stay, insurance covered not a penny of the treatment offered by Rhodes’ little practice in Corpus Christi.
But the Martinez family would not be deterred. Further complicating their predicament was a transportation problem, as Joseph was in no condition to do anything other than lie in bed. They rented an RV, and a seven-person crew – all six immediate family members, plus Grandma and the family dog – made the pilgrimage.
Treating damaged nerves
Unlike Stanford’s treatment, Rhodes’ approach does not require a medical team of nutritionists, physical therapists, psychiatrists and pediatricians. Instead, it requires just a black box, 8 inches by 8 inches, from which protrude electrodes that attach to various parts of the body.
Called a VECTTOR machine, the device was invented by Rhodes and is designed to treat damaged nerves through electronic stimulation. Though the machine has not yet been approved by the FDA, Rhodes has told patients that he believes it soon will be.
During a brief interview, Rhodes told the Daily Breeze that Joseph might be the worst chronic-pain case he’s seen since he began treating patients with his machine nearly 20 years ago. He said he’s happy to hear that Joseph is doing better.
“It’s fun to win,” he said.
Justin and Susan Martinez credit the device for saving their son’s life. The family bought a machine for $4,500 and administered treatment twice a day – once in Rhodes’ office by morning, and once in their Texas hotel room by night.
Even though the family eventually learned how to administer the treatment themselves, the parents and Joseph stayed for 4 1/2 months. Joseph’s mother said this is because they needed Rhodes’ expertise in weaning Joseph off of the drugs to which he’d become addicted.
Triggering Joseph’s pain
Characterized by severe and relentless pain due to misfiring nerves, complex regional pain syndrome afflicts somewhere between 200,000 and 1.2 million Americans, according to the Reflex Sympathetic Dystrophy Syndrome Association. Its onset is often triggered by a minor injury, such as a sprained ankle.
In essence, the sensory system overestimates the extent of the damage and sends an inaccurate message up the spinal cord to the brain. The result, doctors say, is a level of pain – usually of the intense, burning variety – that is disproportionate to the injury.
Eventually, the condition can cause extreme swelling and atrophy to muscle and bone, leading to permanent damage.
Joseph’s ailments began sometime in September 2010, when the entire six-member family – two parents and four children – became sick from undercooked chicken. Everybody recovered except for Joseph, who seemed only to grow worse and worse.
By October, Joseph had stopped attending eighth grade at St. Catherine Laboure School in Torrance, where he once thrived. When he hadn’t returned several months later, the students organized a fundraiser to help their friend.
The Daily Breeze covered the story in March, and administrators at the school created an account to manage the donations, which totaled upward of $35,000.
At the time, the family’s struggle centered on health insurance.
Their health care provider – THIPA – refused to authorize treatment for Joseph on the grounds that the plan covered expenses only for services rendered within the network, which is limited to the South Bay. But no local medical centers were outfitted to treat children with complex regional pain syndrome. The family wanted to send Joseph to one of the handful of facilities across the nation so equipped, such as the children’s hospital at Stanford.
The donations were initially collected as a means to cover costs that were apparently going to have to be paid out of pocket. But the month of April brought a major breakthrough. Due in part to the persistent prodding of a prominent doctor in the field, Lonnie Zeltzer, director of the pediatric pain program at Mattel Children’s Hospital at UCLA, the health care provider relented and agreed to authorize treatment. Translation: Their costs at Stanford would be fully covered.
Days later, ecstatic family members stood on the runway of Torrance Municipal Airport, hugging and shedding tears of joy as a medical plane carrying Joseph took off for Stanford. But three weeks into Joseph’s stay, the parents terminated the treatment, citing fundamental disagreements they’d had with the doctors and nurses over how best to care for the boy.
They returned to Torrance, with insurance picking up the cost of flying him back. Not long after, a member of their church told the family about Rhodes, and provided a book authored by Rhodes titled “Pain Banishment, Not Pain Management.”
Inspired by the book and desperate over their son’s unremitting pain, the family rented the RV and began requesting funds from the donation pot, which administrators at St. Catherine Laboure School distributed on an incremental basis.
Four months later, the family had exhausted the funds. So in mid-August, Joseph and his father – who himself suffers from spinal disease and is on disability – went to New Mexico to stay with Justin’s mother, who is retired. Susan, meanwhile, returned to her job at Triumph Aerostructures in Hawthorne, where she specializes in inventory management. She’d been gone five months.
“I’m so blessed I still have work,” she said, adding that the company also chipped in with a generous donation. “I was gone for a long time. The job was waiting for me.”
While in New Mexico, Joseph rose from the wheelchair his grandmother had lent him. From here, his progress accelerated, his parents say. He began working out at the YMCA, riding a bicycle and walking his grandmother’s dogs.
Sometime around Halloween, the boy and his father returned to Torrance, surprising Joseph’s older sister by attending her junior ring ceremony at St. Joseph High School in Lakewood. For two months, the parents declined requests from the Daily Breeze to participate in a follow-up story, saying their son had told them he was not ready to relive the experience. But by mid-December, Joseph was game.
To the casual observer, the before-and-after picture of his condition is profound. During interviews for each of the first three stories published from March through May, it was nearly impossible to catch a glimpse of Joseph’s face, as he was always moppy-haired and lying prone in a bed – his parents said this was the only position that didn’t cause excruciating pain. When asked a question, Joseph would respond with a faint moan that only his father seemed able to decipher.
But in mid-December, Joseph had the appearance of a normal kid, sporting a Charlotte Hornets cap, trendy black-rimmed glasses, sweatshirt, jeans and skater shoes. He was soft-spoken, though, and his parents gently encouraged him to speak up when answering a reporter’s questions.
Joseph continues to grapple with sleep difficulties, a final side-effect of the drugs. The family still administers the VECTTOR machine treatment on him twice a day. (Justin, too, has begun using the machine for his ailments, and says he has made progress. So has Joseph’s grandmother in New Mexico, who suffers complications from diabetic neuropathies, a nerve disorder associated with diabetes.)
Although Joseph is up and able, much work remains, as he has missed his entire eighth-grade year.
Easing back into school
A tutor from North High School in Torrance will begin visiting the home this month, his mother said. The family has thus far held off on the tutoring sessions because of his sleeping difficulties, she said, adding that the boy’s father has done some home-schooling. (The family also pulled their youngest child, Emmanuel, out of St. Catherine Laboure School because the trauma of Joseph’s situation left him sleep-deprived. The father has been home-schooling that boy as well.)
The family plans for Joseph to start attending North High sometime in the spring, after the tutor has brought him up to speed. The parents want to send Joseph to a Catholic high school beginning next fall, perhaps Bishop Montgomery in Torrance or St. John Bosco High in Bellflower, where his older brother attended.
Zeltzer, the doctor from UCLA who’d helped the family receive full coverage for the stay at Stanford, said now that Joseph is doing better, it is imperative to get him back into school as soon as possible, perhaps by starting slow.
“It’s very, very hard for children when they’ve missed a lot of school to go back,” she said. “Most children need help with transitioning gradually, rather than going back as an all-or-nothing kind of thing.”
Although Zeltzer remains skeptical of Rhodes’ method, she said she knows from Joseph’s earlier visits to her office that his pain was real.
“Pain can become a disease in itself,” she said. “It’s stressful to be in pain. Pretty soon the pain and the stress and all of that go together. It becomes a snowball effect. There are more and more layers you have to pick apart.”
Joseph, meanwhile, said he is grateful to many.
“I’m like really, really thankful to everyone who donated money, to St. Catherine, to Dr. Rhodes,” he said, in a hushed voice. “Without them, I couldn’t have gotten better.”
When 9-year-old Jordan Flaum of Redondo Beach spent a week recovering from heart surgery earlier this year at UCLA Mattel Children’s Hospital, she suffered from a bout of boredom.
“There was nothing to play with,” she explained.
And now, thanks to her, the hospital is in store for a windfall of toys. With an eye toward helping her fellow young patients – some of them terminal – Jordan organized a toy drive last week at her school, Beryl Heights Elementary, and the effort was a smashing success.
Students brought in so many toys that the spread covered the entire surface area of a half-dozen tables in the cafeteria.
“I think all of this stuff will really help them,” Jordan said, surveying the plethora of board games, Barbie Dolls, Transformers, Legos, puzzles, DVDs and coloring books – all of them brand new. “They’ll finally have something to play with and have fun.”
Talking to Jordan, it’s easy to forget she’s still at an age in which toys are important.
A spunky spirit with long wavy tresses, eyeglasses and a penchant for sparkly clothing, Jordan is one of those kids who speaks with the fluency of an adult. When finalizing the week-and-a-half-long drive last week, Jordan scurried purposefully about the campus clutching a sheet of paper – the inventory – coordinating an effort to relocate the gifts from the classrooms to the cafeteria.
“I’m kind of like a manager right now, so I’m kind of like running back and forth,” she said, politely explaining a brief absence. “Now I see why it’s hard being a boss.”
A racing heart
Until this past spring, Jordan would experience sudden episodes of a racing heart, with her pulse surging to as many as 300 beats per minute. The short spasms would last for less than a minute before calming down to the normal range for kids – 60 to 100 beats per minute.
The condition is known as supraventricular tachycardia, and is thought to be an electrical problem.
“It felt like someone was pounding on my chest,” Jordan said. “I was sitting in class and all of a sudden I would feel it. It was anywhere from after I was jogging to sitting in class to lying down in my bed, and I would have them. It was just random.”
Initially, Jordan’s parents – her father, Dana, is a public defender and mother Tracy is a preschool teacher – half suspected that Jordan’s complaints about her runaway heartbeat were exaggerated. But one day their daughter complained of a pain in her heart, and they took turns putting a hand over it.
“We were like `Oh my gosh,”‘ Tracy Flaum said. The episode was all the more alarming because Jordan had just been sitting.
In March, Jordan’s parents took their only child to the hospital, where doctors performed a procedure in which the faulty “wiring” was literally snipped. It involved the use of a catheter, which was inserted through several entry points on her body, including the neck. Doctors told the family that to the best of their knowledge, the problem is solved.
Tracy Flaum – a spitting image of her daughter, minus the glasses and plus 25 years – said it was a routine procedure.
“For the doctor, it was like a walk in the park,” she said. “For us – it’s our baby.”
Tracy and Dana Flaum were initially in deep distress over the impending surgery. But spending a little time in the hospital quickly put things into perspective. They saw rooms adorned with signs bearing a name – an indication that a child was more or less taking up permanent residence – and tiny kids bald from chemotherapy wandering about pushing portable IVs.
Among the children benefiting from the toys will be Jordan’s own cousin, Nadia Gold, also a fourth-grader at Beryl Heights. She will undergo surgery over the winter break.
Jordan – who turns 10 on Wednesday – initiated the toy drive without any parental prodding. In fact, it began without her mother’s knowledge, when Jordan took to the stage during one of the school’s weekly Wednesday “town meeting” talks, in which the principal typically shares news and information with the students. This time, Jordan delivered a speech imploring her classmates to donate toys.
Beryl Heights Principal Karen Mohr said Jordan is a one-of-a-kind kid.
“She’s very dynamic; she’s got a great sense or humor,” she said. “She is one of the most responsible kids I know.”
Mohr added that Jordan’s plight hit close to home.
“My husband has congenital heart disease,” she said. “American Heart Association, Jump Rope for Heart, all those things are very near and dear to me.”
Inspired by Justin Bieber
Jordan, who performs other volunteer work, said she draws much of her inspiration from teenage heartthrob Justin Bieber, her favorite singer, himself a connoisseur of charitable causes.
Tracy Flaum said when Bieber uses Twitter to harness the power of his fan base for the betterment of a favorite charity – such as one called Pencils of Promise for building schools in the developing world – Jordan is quick to oblige.
“Whatever Bieber says is what we have to do,” Tracy Flaum said, with an affectionate roll of the eyes. But she understands such infatuation. After all, Jordan was named after a member of her favorite childhood band: New Kids on the Block.
Jordan, meanwhile, has so much spunk that she even swung and kicked at the doctors while out cold during surgery. They brought in her mother.
“Any time they touched her, she swung,” Tracy remembers. “And then I came in and said `Jordan, it’s Mom.’ And I touched her arm, and she immediately calmed down. … It’s like she knew.”
Joe Newman of Hermosa Beach was in kindergarten when it became painfully clear that attending a traditional school just wasn’t going to work.
His problem was not academic; he’s always been a math whiz. Rather, it was behavioral. The stimuli in the classroom filled him with so much anxiety he’d act out by knocking over furniture, hiding under tables or fleeing the room.
Joe missed about a year of school while his parents agonized over what to do. He has since found a place at the Center for Learning Unlimited, a tiny school in Torrance that caters to bright students on the high-functioning end of the autism spectrum.
Many of the center’s students have been diagnosed with Asperger’s syndrome, a mild form of autism characterized by difficulties in social communication.
Tucked away in a nondescript strip mall at 2785 Pacific Coast Highway, the center is technically a nonprofit private school, with tuition costs running about $34,000 a year. The tab is usually picked up by local school districts, sometimes as a result of litigation between the families and the districts.
The center has a niche in part because it serves a population struggling to cope with a form of autism that is especially mysterious.
“As a society we have more understanding of people who are obviously more needy than of people who have more discreet kinds of needs,” said Caron Mellblom-Nishioka, a professor of special education at California State University, Dominguez Hills.
“If we see somebody who’s a math whiz, we are not as sensitive to the social kinds of issues. We think, `Why is this person being such a nerd? If they are that smart, why can’t this person figure that out?”‘
But she added: “You don’t want to shut those people down. … Look at the pictures of Einstein — does he look like a normal person?”
Ginny Mathews, founder and director of the center, said public schools understandably often have trouble with the higher-functioning kids – “the Joes of the world.”
“Joe is tying up all kinds of resources when he’s climbing on the desk,” she said. “(Educators) are trying to respectfully manage this child’s challenges, but that’s shifting their attention from other children.”
Many of the center’s students – there are currently 23, who range in age from 4 to 21 – are quite talented. One was an expert in 15th century literature. Another has been working on a novel. Others have demonstrated an aptitude for painting, photography or poetry.
Those who haven’t been diagnosed with Asperger’s wear other labels: ADHD, bipolar disorder, emotionally disturbed or some complex combination thereof. Still others exhibit symptoms from disorders that are almost singularly rare.
Take Joe Newman. The boy has a chromosomal abnormality whose official diagnosis is so long and technical his mother, Corey Newman, can’t even recite the official name of it without the aid of a document. He’s one of only a few known people on the planet with the condition, which manifests itself in not only social deficits but also seizures.
Many of the symptoms resemble Asperger’s syndrome, but there are key deviations. Whereas people with Asperger’s often are unaware of social cues – perhaps they can’t perceive that a person is sad – Joe understands the cues, but doesn’t know what to do with them.
“Joe will say, `You look so sad, let’s play right now,”‘ his mother said. “He will hug the mailman. … He moves in too close or is sitting too far away when trying to talk to somebody.”
Joe has a difficult time knowing how to process sensory information: The distant sound of a barking dog across the street might seem every bit as immediate as the sound of the teacher talking.
For Joe, academics are fun. So much so that his parents and teachers use them as a reward for good behavior. When the family goes to a restaurant, they bring a backpack filled with math workbooks to keep him occupied.
At Hermosa View Elementary School, things deteriorated to the point where his mother, Corey, never left the parking lot after dropping Joe off in the morning. She knew a phone call from the office requesting that she take him home was inevitable.
Like many parents, she discovered the center on the Internet, during a desperate search for an appropriate school. The Hermosa Beach City School District paid his tuition to the center without challenge.
Mathews said the center distinguishes itself from the public school system in one major way.
While public schools tend to be focused on correcting behaviors, the center attempts to delve into – and then address – the causes for the behaviors. For example, public schools need all students to sit in their chairs, and will do whatever it takes to prevent students from, say, wandering aimlessly.
“We look at why the kid can’t sit down in the chair,” she said.
This means that, in addition to paraprofessionals and special-education teachers, the center’s staff includes a psychologist, neuropsychologist, speech-and-language pathologist and occupational therapist. Working together, the team tries to assess how a child can best be served.
Since its 2002 inception, the center has served about 150 students. The ultimate goal is to reintegrate them into the traditional classroom setting, or send them off to some form of higher education. Mathews said they are usually successful, but not always.
“We’ve lost a couple along the way,” she acknowledged. “We’ve got one who’s in prison.”
One satisfied graduate of the program is Gil Benezer. Now a sophomore at the University of California, Davis, Benezer – who said he has been diagnosed with “borderline Asperger’s” – believes he would have dropped out of school had it not been for the center.
And yet, he was at the top of his class at Manhattan Beach Middle School.
“I’d been bullied and was really stressed out and really depressed,” he said, adding that he’d twice attempted suicide.
Why was he bullied? “Because I was fat, because I was weird, because I had few friends,” he said.
The center, he said, was a welcoming place that taught him everything from time-management skills to coping with his depression.
“I liked that I could go at my own pace,” said Benezer, whose parents are both medical doctors. “They didn’t pressure me into anything. It is a very warm atmosphere. They cared.”
At UC Davis, he’s getting straight A’s and plans to major in biochemical engineering.
Corey Newman, meanwhile, is pleased with Joe’s progress.
“He works in groups now – he never used to work in groups,” she said. “He says hello to every person in the school, and acknowledges the staff. … It sounds so small, but these things are so huge to us.”
In early April, when insurance providers finally agreed — after months of denials — to send a 14-year-old Torrance boy to a children’s hospital in Stanford for treatment of an extremely rare pain disorder, many people cheered.
That day, when the medical plane lifted off at Torrance Municipal Airport bound for Palo Alto, family members of Joseph Martinez hugged and cried, believing that this might bring back the old Joseph — the one who played video games and baseball — as opposed to the one who lay in bed 24/7, screaming, moaning and addicted to painkillers. The one who’d missed an entire year of school.
But it wasn’t to be.
After about six days, the family felt that the team of doctors in Stanford was making insufficient progress. So they pulled out of the program in mid-April. Now, they are in Texas, pinning their hopes on a podiatrist with a gadget.
Not long after leaving Stanford, they learned of the folksy doctor whose practice does not carry nearly the same prestige as the Lucile Packard Children’s Hospital in Stanford, which is among just a handful of U.S. medical centers equipped to treat children with complex regional pain syndrome, the rare disorder from which Joseph appears to be suffering.
Dr. Donald Rhodes of Corpus Christi is a podiatrist by trade, a “foot guy,” as he says. Though he is little known in the small field of pain management, the family in late April was impressed enough by the look of his methods to rent an RV for $2,700 and drive out to Texas from Torrance. (Joseph is in too much pain to sit in a car for extended periods.)
Unlike Stanford’s comprehensive treatment, Rhodes’ approach does not require a medical team of nutritionists, physical therapists, psychiatrists and pediatricians. Instead, it requires just a black box, 8 inches by 8 inches, from which protrude electrodes that attach to various parts of the body.
Unlike the treatment at Stanford — estimated to cost $17,000 a week — Rhodes’ care is not covered by insurance. Instead, the cost is borne entirely by a $35,000 pot of donations raised mostly by Joseph’s school, St. Catherine Laboure in Torrance. A day or so before leaving for Texas, the family requested and received $15,000 from the principal. Joseph’s mother, Susan Martinez, said the family has about $5,000 left.
Complicating matters is that Susan has missed about eight weeks of work to travel with her son. Her husband, Justin Martinez, who himself suffers from spinal disease, is on disability.
As for the device, called a VECTTOR machine, it was invented by Rhodes and is designed to treat damaged nerves through electronic stimulation. It has not yet been approved by the FDA. As of Tuesday, posted on Rhodes’ website was a letter of apology about a malfunction in the device that seemed especially prevalent when used by children.
The family purchased one of these machines for $4,500. Every day, they hook Joseph up to it twice – once using their own machine at the $80-a-night hotel where they are staying, and once at the doctor’s office, which costs $100 a visit.
Despite the skepticism of experts and others back home, the family insists Joseph is finally making progress.
For the first time in months, they say, he has been able to shower without screaming in pain. He is chatty – sometimes excessively so, his mother says. He watches movies while sitting in reclining chairs. Before, he was not only bed-bound, but constantly prone, because for some reason it hurt too much to lie on his back. He now plays cards with his younger brother. But there is still a long way to go, they say.
“He’s really better than he was as Stanford – that I can tell you,” Susan said. “It should take a while to get the full benefits of this.”
The biggest negative, she says, is that Joseph is experiencing withdrawal from his heavy-duty pain medications, such as methadone, from which Rhodes is weaning him. The withdrawal has triggered excessive sweating, nausea and insomnia.
The latest twist in the Joseph Martinez story demonstrates the intense frustration that can accompany pain-related disorders. Complex regional pain syndrome (CRPS) is characterized by severe and relentless pain due to misfiring nerves, which in turn send pain signals to the brain. It afflicts between 200,000 and 1.2 million Americans, according to the Reflex Sympathetic Dystrophy Syndrome Association.
As for Rhodes, he said that although he has been treating patients with chronic pain for 19 years, he has never seen a case as severe as Joseph’s.
“He may hold the dubious honor of being the worst one,” he said.
Rhodes is not one to understate the pain felt by victims of CRPS, which he pronounces “Crips.”
“The only way I can explain it is this: You feel as if you’ve been dipped in boiling oil and lit on fire,” he said. “Joseph Martinez is in an even worse situation.
“Normally, CRPS comes from an injury to the hand or a foot, which then extends throughout the body. His came from eating bad (undercooked) chicken. So his started in the stomach and intestinal tract, then spread throughout the body. So he feels like he has drunk boiling oil that has then been lit on fire.”
Though barely a year old, the VECTTOR machine is a refined version of older devices designed by Rhodes. This is the first one he has submitted for FDA approval.
Rhodes said he entered the field of pain management almost by accident in the early 1990s, when treating – with a widely used form of electric stimulation – a patient with foot pain who also happened to have migraines.
“Before her foot pain stopped, her migraine headaches disappeared,” he said. “I had accidentally triggered an acupressure point.”
This prompted him to come up with several theories about pain management “that turned out to be true.” Rhodes began patenting ways to treat a wide range of pain disorders, all of which he says share the same underlying cause: oxidative stress. The VECTTOR machine is his eighth patent.
Rhodes says his device has provided empirical evidence that Joseph is getting better. When Joseph arrived, his fingers and toes were cold and numb from poor circulation. Now, Joseph says he can feel them again, and his circulation has improved.
Among those disappointed with the choice the Martinez family made is a prominent expert in the field, Dr. Lonnie Zeltzer, director of the pediatric pain program at Mattel Children’s Hospital at UCLA.
Back in March, Zeltzer had personally intervened, successfully cajoling the family’s health care provider, THIPA, into allowing his insurance company to cover the costs of sending Joseph to Stanford.
She works closely with the Stanford team, and said Joseph had been making progress. (Members of the Stanford team declined to comment, citing concerns over patient confidentiality.)
“(Stanford) put Joseph ahead of others who had just as much pain because I really pushed,” she said.
She fears that Joseph’s progress to date is the result of a placebo effect that is relatively common.
“I often call it a short honeymoon period,” she said. “It’s something new, that sort of builds on itself. Then everything sort of collapses when you leave.”
The family, meanwhile, was put off by what they felt was the Stanford team’s dismissal of their knowledge about what was best for Joseph. They say the doctors generally wanted to jump into intensive physical therapy without first trying to manage Joseph’s pain.
When Joseph arrived, inactivity had rendered one of his arms useless. After two days at Stanford, the second arm went limp as well.
“I thought they could have learned about how Joseph was first – how fragile he was,” his mother said.
In a six-page letter to Zeltzer – who’d long served as the family’s advocate – the father, Justin, described his frustration. He said Joseph had been sedated on the emergency air ride to Stanford, but awoke in “a tremendous amount of agony.”
“To our surprise there was no real attempt to try to make him comfortable and ease his pain,” he wrote.
“The next day Joseph was woken up by two young female therapists who … according to him were just talking back and forth to each other loudly and laughing and giggling. My wife was asked to leave the room. They began speaking loudly to Joseph, not giving him a chance to respond and refused to hear anything he had to say.”
In a response email from Zeltzer (provided to the Daily Breeze by the family), she implored them to stay the course. She suggested that their overprotective nature may be exacerbating the pain.
The Stanford team, she said, has “done this many, many times before and know what they are doing. Joseph’s pain system is turned on and the `system’ needs to reprogram itself. … The more you and your husband stay away and allow Joseph to feel that he doesn’t need your protection, the more he will develop the confidence to function.”
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.”
Visiting 14-year-old Joseph Martinez in his home, it’s difficult to believe that, just six months ago, he was a healthy boy who enjoyed Little League baseball, flag football and carousing with friends.
Now, the Torrance teen lies in bed on his stomach 24 hours a day, drugged on methadone, with his head facing the bedroom door but his face obscured by a mop of black hair, moaning and writhing from a pain that touches every region of his body.
Joseph is stricken by a mysterious disease called complex regional pain syndrome, characterized by severe and relentless pain due to misfiring nerves, which in turn send pain signals to the brain. It’s a rare condition, afflicting between 200,000 and 1.2 million Americans, but is becoming more prevalent in children, according to the Reflex Sympathetic Dystrophy Syndrome Association.
Joseph chooses to lie on his stomach because, for some reason, lying on his back is unbearable. The pain is such that he cannot put on a shirt or take a shower without screaming.
He has been in this state, and in this bed, for five months.
In October, he dropped out of school at the K-8 St. Catherine Laboure school in Torrance, where he once thrived and where his family has been a prominent fixture for years.
“He used to weigh 169 pounds,” said his mother, Susan Martinez. “Now he’s bones.”
To their heartbreak, he has even asked them for death.
“He says it, `just kill me,’ I can’t go on,” said his father, Justin Martinez, who for years has volunteered at the school as a basketball coach. “Maybe three times, he’s asked me to hug him, but he can’t ask anymore because it hurts too much.”
His parents are frantically trying to find a treatment. Thus far, their efforts have borne little fruit. They’ve battled their insurance company and listened to flawed advice from doctors unfamiliar with the disorder. Now, the entire family is stressed out and sleep-deprived, due to Joseph’s round-the-clock wailing.
Their primary problem is that few hospitals — as few as three in the United States — are fully equipped to treat the condition, and the family’s insurance coverage prohibits them from seeking help outside their network area in the South Bay.
But they’ve reached their wit’s end, and plan to fly him to what they believe is the best of those hospitals, Cleveland Clinic Children’s Hospital, costs be damned. They plan to pay the $45,000 out of pocket, and that doesn’t include airfare or hotel expenses.
Meanwhile, moved by their friend’s plight, Joseph’s classmates at school have organized a weeklong event in honor of him. All this week, they’ve been wearing blue — Joseph’s favorite color — and holding bake sales.
The original idea was to raise a hundred or so dollars as a gesture of kindness. But Joseph’s story struck a chord with parents, and the money has been pouring in. Already, the school has raised more than $10,000.
“It speaks to the closeness of our school and parish community,” said Mary Dell’Amico, St. Catherine’s vice principal. “Many of our families struggle just to make tuition. To see the kind of donations coming in is just inspiring.”
The third of four children, Joseph’s two older siblings were standout athletes and scholars at St. Catherine, Dell’Amico said. He, too, was a decent athlete and student, and was always well liked by classmates.
“He was quiet but you knew he was there,” she said. “He wasn’t one of the boisterous kids that had to be the center of attention.”
The Martinez family is a single-income household, with Susan holding down a job as a project dispatcher at Triumph Aerostructures in Hawthorne. Justin, who himself suffers from a spinal disease, is Joseph’s primary caretaker during the day, and the home-schooler of their youngest child.
Even in the medical community, not much is known about complex regional pain syndrome. This means doctors are often at a loss about how to treat it.
This was certainly the case for the Martinez family, which dealt with one perplexed doctor after another at Torrance Memorial, Miller Children’s Hospital in Long Beach, and Children’s Hospital Los Angeles. One well-meaning doctor reasoned that the best remedy was to minimize the pain by prescribing a maximum dosage of heavy-duty painkillers, such as morphine and the fentanyl patches that are commonly used on cancer patients.
The powerful drugs left the boy in drowsy, but, to everyone’s surprise, were useless in relieving pain. Instead, they simply turned him into an unwitting addict.
Other doctors concluded that the pain must be entirely psychological. One even asked the parents to leave the boy’s hospital room and then, after they complied, ordered him to get out of bed and walk.
After cycling through 18 doctors, the family in January finally found hope in Dr. Lonnie Zeltzer, the renowned director of the pediatric pain program at Mattel Children’s Hospital at UCLA.
“She was the only one who went to Joseph and said, `You are not faking it,”‘ Susan said.
Zeltzer said the family needed to send the boy to one of the three hospitals. (Zeltzer’s program does not have the in-patient component that he needs. And even if it did, the insurance wouldn’t cover it.)
Zeltzer, whose name appears frequently in national media outlets as a pain expert, said Joseph’s condition has languished so long that it has morphed into “widespread central pain syndrome.”
“I think that many doctors, if they do tests and can’t find anything in their tests, they assume it’s psychology or attention-getting,” she said. “They sort of downplay the amount of suffering.”
Adding to the misery, being bedridden has brought about secondary pain. The incessant moaning and screaming, for instance, has left Joseph with a sore throat. The inactivity has weakened his left arm to the point where he only uses his right. He will have to relearn how to walk.
Still, Zeltzer believes that, if treated correctly, Joseph will again throw a baseball, toss a football, haul his books to class and hang with friends — as early as next year.
When she treated him this winter, Zeltzer’s first order of business was to wean him off the high-octane painkillers without triggering withdrawal. She put him on methadone, which is often prescribed to patients hooked on opioid drugs, as well as recovering heroin addicts. Now, she said, he needs to attend one of the three medical centers. (The other two are in Stanford and Seattle.)
There, a team of specialists in psychiatry, psychology and occupational therapy will help him retrain his brain, which has been re-networked in such a way that the pain receptors refuse to turn off. Physical therapists will get him moving again, strengthening his muscles.
Complex regional pain syndrome tends to be triggered by a traumatic event, such as a car accident or medical procedure. Often, the severity of the pain experienced by the victim exceeds what would be expected. The age of the average sufferer is 42, but experts say it is becoming more and more prevalent in children, usually girls.
In Joseph’s case, the family believes the catalyst was an episode of food poisoning that left him with flu-like symptoms.
Zeltzer said one way to better understand CRPS is to think of the amputees who routinely suffer from what is known as phantom pain. Although the limb is gone, the receptors in the brain associated with it are still there, and oftentimes are still firing.
For amputees, the phantom pain usually subsides after a year, Zeltzer said. But sufferers such as Joseph must retrain their brain. This, she said, requires learning about how emotions and thoughts affect physical pain, and then using that knowledge to change thought patterns.
For instance, she said, signals of distress in the brain often set off a chain reaction that bathes the brain in stress hormones, which may disrupt a person’s sleep schedule, which in turn often leads to a heightened sensory of pain.
“If you don’t get good restorative sleep, your body starts to feel pain in general,” she said. “It’s like a snowball effect.”
To help Joseph, a therapist may ask him to imagine an activity he enjoys, like playing baseball.
“They want them to really be there, to really feel it: the warmth of the sun, all the sensations,” Zeltzer said. Once the muscles are relaxed, once the circuitry calms down, the patient is asked to take a moment to notice his current state of tranquility.
“In a sense, you’re replacing the pain-image circuitry with developing a new circuitry of feeling really good,” she said. “Your brain learns that bodily state of relaxation just like learning how to write the alphabet or ride a bike.”
Last week, without prompting from the family, Zeltzer tried to intervene on Joseph’s behalf. She called the medical director of their health care provider, THIPA, in an effort to get the child admitted to Stanford, with THIPA picking up the tab. They haven’t heard back.
The Martinez family would prefer Cleveland to Stanford. However, they said should the health provider cover a trip to Stanford, they will gladly go. In that event, any unused proceeds from the school fundraiser — which they did not initiate — would be returned.
As for the food poisoning that may have provoked Joseph’s condition, the family believes it was a meal of undercooked chicken in September. All six family members got sick, but for Joseph and his younger brother, the symptoms developed into something akin to the flu.
His younger brother recovered after a month, but the symptoms only worsened for Joseph.
“The virus by now, it’s undetectable,” said Justin, a 39-year-old graduate of North High School in Torrance. “It’s long gone, but the damage is still there.”
How to Help
Anyone interested in contributing to St. Catherine Laboure’s fundraiser for Joseph should call the school at 310-324-8732.