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Nearly forgotten, toxic shock may be on the rise

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Times Staff Writer

Toxic shock syndrome linked to tampon use, which made headlines 25 years ago when the dangerous illness sickened thousands of U.S. women and killed dozens, may be reemerging as a public health threat, according to physicians and other experts.

Two leading researchers say the number of cases reported to them by doctors nationwide has increased during the last three years, though the levels are not thought to be nearly as high as they were in 1980, the peak year for toxic shock cases. And a U.S. Food and Drug Administration official said recently that the agency had received an increasing number of reports of toxic shock syndrome linked to tampon use.

The suspected increase is still largely anecdotal, and government statistics are unavailable because federal researchers stopped actively monitoring TSS cases in 1987.

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In Los Angeles County, five cases of TSS have been discovered in teenage girls using tampons in the last year -- four since September, according to physicians who treated the girls.

Some health officials are concerned about the possible reappearance of the illness, thought to have largely disappeared when a brand of tampon linked to TSS was withdrawn from the market in 1980. The illness can strike swiftly, and cases could easily be missed if people assume that tampon-related TSS is no longer a threat, experts said.

The apparent rise in TSS cases is “really surprising,” said Dr. Jay M. Lieberman, chief of pediatric infectious diseases at Miller Children’s Hospital in Long Beach, where four of the cases were treated. “It can quickly be fatal. I think it’s important that teenage girls and their parents be aware of the potential for TSS if the girl wears tampons. I don’t want to scare people, but the disease is still around.”

At UCLA Medical Center, doctors who treated a teenager last fall with toxic shock syndrome thought the diagnosis was so unusual they submitted a report to a medical journal. “People don’t think of this as a diagnosis today,” said Dr. James Cherry, a professor of pediatric infectious diseases at the David Geffen School of Medicine at UCLA.

All of the teenagers at UCLA and Miller Children’s Hospital were critically ill but survived. However, a 16-year-old girl in Santa Clara County died in November from probable TSS, according to the county’s medical examiner.

“I’ve gotten calls from doctors from a variety of places around the country,” says Patrick Schlievert, a professor of microbiology and immunology at the University of Minnesota who has studied TSS. “They say, ‘Gee, all of a sudden I’m seeing cases again,’ and they ask me what’s going on. Basically, what we’re seeing is a steady rise in incidence such that [the rate of TSS] is one-third to one-half of what it was when the incidence peaked around 1980.”

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Even as rates may be increasing, TSS remains a rare illness. At its peak in the early ‘80s, about 10 cases were reported for every 100,000 menstruating women. In 1980, 772 U.S. women developed the illness and 38 died, a development that generated headlines and caused many women to question the safety of tampons. The cause of the illness was eventually attributed to highly absorbent tampons made with synthetic materials.

After the Rely tampon was removed from the market, rates fell to about one case per 100,000. Schlievert now estimates the rate is 3 to 4 cases per 100,000 menstruating women.

Schlievert, who has studied TSS for decades, reported last year that cases of the illness, both in menstruating women and others, in the Minneapolis-St. Paul area climbed from 15 cases in 2000 to 50 in cases in 2003. The study was published in the Journal of Clinical Microbiology.

The U.S. Centers for Disease Control and Prevention, which keeps statistics on infectious diseases, said it had no evidence that tampon-related TSS was increasing. Dr. Nancy Rosenstein, of the CDC’s National Center for Infectious Diseases, acknowledged that the agency’s methods for tracking TSS rates -- national mandatory reporting of cases by states was dropped in 1987 -- were insufficient to detect an increase in a relatively rare disease.

Last May, in remarks to the North American Society for Pediatric and Adolescent Gynecology, Dr. Judith U. Cope of the FDA’s Center for Devices and Radiological Health, told an audience of physicians that tampon-related TSS reports to the FDA were increasing, though the overall rates were still small. The remarks were published in the June issue of the society’s medical journal.

Asked about Cope’s assessment recently, an FDA official in the Center for Devices and Radiological Health, said TSS rates were not going up. The official, who asked not to be identified, offered no explanation for the apparent discrepancy. Cope was not available for comment, according to an FDA spokeswoman.

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Toxic shock syndrome is caused by the Staphylococcus aureus bacteria that is commonly found on the skin and mucous membranes. Certain strains of S. aureus, however, can cause infection, and tampons -- highly absorbent tampons, in particular -- increase that risk. Toxic shock syndrome occurs when certain strains of S. aureus that produce toxins pass into the bloodstream. Another type of TSS, called nonmenstrual TSS, can occur in people who have undergone surgeries or who have postoperative wound infections. Those types of TSS cases are also thought to be rising, according to Schlievert.

Women with tampon-associated TSS usually become sick during menstruation or in the two days before or after their periods. It begins with flu-like symptoms: high fever, chills, vomiting, diarrhea and dizziness. Within as few as two days, however, the toxins can attack the body’s organs. The illness is fatal in 5% of cases, according to the CDC.

Meghan Duron, 14, was about to start her freshman year at Mira Costa High School in Manhattan Beach last September when she began having flu-like symptoms and a rash, and then two days later, became violently ill.

When doctors admitted Meghan to Miller Children’s Hospital, she was experiencing septic shock, a condition in which not enough blood is flowing through the body. “I was in high school when toxic shock syndrome first happened. I didn’t even think it was around anymore,” said Meghan’s mother, Kathy Duron.

In the years since the 1980s scare, TSS has slipped from the radar screen of many doctors, especially younger physicians who may never have seen a case, said Lieberman.

Lieberman said that in two of the recent cases treated at Miller Children’s Hospital, doctors who saw the girls before their hospitalization did not immediately recognize the signs of TSS, even though the girls had been wearing tampons. “They were critically ill,” he said, adding that any further delays could have been fatal.

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While no one is certain why cases of tampon-related TSS appear to be occurring again, several factors are suspected, doctors said. One explanation is that the bacteria that causes TSS may, over time, have become more virulent. Schlievert’s research shows that one type of S. aureus that is resistant to methicillin and similar antibiotics may cause up to 30% of new tampon-related TSS cases. Methicillin-resistant S. aureus may also be behind an upswing in nonmenstrual TSS cases too, Schlievert said.

Other experts worry that changes in tampons may be contributing to more cases of toxic shock syndrome. In 2000, the FDA allowed a more-absorbent tampon, labeled “ultra,” on the market. “In the past, increases in absorbency were shown to directly relate to the incidence of TSS,” says Dr. Philip M. Tierno, a microbiologist at New York University Medical Center.

Girls today often start their periods at younger ages than in the past. By adulthood, most people have developed antibodies to S. aureus, but only about half of 13-year-olds have such antibodies, Schlievert says. Most of the TSS cases reported to him have been among 12- to 15-year-olds

The FDA advises women to change tampons every four to eight hours and to use only the most absorbent tampon appropriate for their menstrual flow. While tampons are often marketed as safe for overnight use, some health experts think that’s a bad idea. “That the FDA would allow [labeling] of an eight-hour, overnight usage of tampons is outrageous,” said Tierno, noting that teens often sleep for 10 to 12 hours.

According to an FDA official, current manufacturing and marketing practices related to tampons are safe. The FDA requires tampon manufacturers to provide information about toxic shock syndrome with their products, usually found on a pamphlet inside the box.

Meghan Duron, however, said she had never heard of TSS. And, says her mother, “With something this serious and this dangerous, there should be a more-prominent warning on the outside of the box.”

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