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August 31, 2016

Against all odds: Teen survives brain-eating amoeba that kills 97 percent of its victims

Daily Briefing

    Sixteen-year-old Sebastian DeLeon has become just the fourth person in the United States in the last 50 years to survive an infection from Naegleria fowleri—the so-called brain-eating amoeba.

    Infections extremely rare, fatal

    According to Marcus Plescia, the health director of Mecklenburg County, North Carolina, Naegleria fowleri are "quite ... prevalent" in warm, open bodies of fresh water, such as lakes, rivers, and occasionally pools. The amoeba can make its way to a person's brain when forcibly thrust up the sinus cavity.

    While infections from the amoeba, called primary amebic meningoencephalitis, are extremely uncommon, just 3 percent of those who are infected survive. According to CDC, there were 138 cases of the infection in the United States between 1962 and 2015—and only three patients survived. Most patients live only 12 or 13 days after infection.

    DeLeon appears to have contracted the infection while swimming in a freshwater lake in Broward County, Florida.

    Making the diagnosis

    Initially, DeLeon suffered from a headache so bad "he couldn't stand to be touched" while spending time on vacation in Orlando, Florida. His family took him to Florida Hospital for Children, where he presented with symptoms similar to those of meningitis: queasiness, sensitivity to light, and headache. Although he didn't have a stiff neck, a telltale sign of meningitis, physicians ordered a spinal tap to test for it.

    At first, laboratory coordinator Sheila Black found nothing in the spinal fluid. Having recently attended a seminar about Naegleria fowleri, though, Black decided to take a closer look.

    Initially, she thought she was seeing white blood cells, but then she saw movement coming from the Naegleria fowleri. 

    "We are all detectives," Black said. "We literally had to look at this and study it for a while and watch for the movement because the amoeba can look like a white cell. So unless you're actually visually looking for this and looking for the movement, you're going to miss it."

    Treating the infection

    Impavido, a drug developed by Profounda to treat cancer, has also been used to treat amoeba infections. Although the drug is not available at most hospitals, CDC will send it via mail when necessary—but that can take time that many patients don't have.

    "In most cases, time [is] the deciding factor" in a patient's outcome, Katie Mettler writes for the Washington Post's "Morning Mix." Luckily for DeLeon, Impavido is manufactured in Orlando—the same city where he was hospitalized. The drug arrived in 12 minutes and was quickly administered.

    Physicians placed DeLeon in a medically induced coma, lowering his body temperature to 33 degrees to keep the amoeba still. He remained in that condition for about three days until tests revealed that the amoeba was no longer in his spinal fluid.

    Doctors then woke DeLeon up, and within hours he was able to speak, according to Humberto Liriano, a pediatric intensive care specialist at the hospital. DeLeon has returned to South Florida for rehab, and physicians say he is likely to make a full recovery.

    "He's walking, talking. It's a miracle," Liriano said (Mohney, ABC News, 8/23; Goldschmidt/Scutti, CNN, 8/23; Aboraya/Tomsic, "Shots," NPR, 8/28; Mettler, "Morning Mix," Washington Post, 8/24).

    Choose the right treatments with evidence-based practice

    Despite the shift toward broad acceptance of evidence-based practice (EBP) among medical staff, over half of physicians report not actually using guidelines day-to-day when they are available. As a result, organizations continue to see tremendous variation in clinical practice—as well as in costs and outcomes.

    Our infographic outlines four principles you can use to support EBP at your organization, along with action steps to implement each one and pitfalls to avoid along the way.


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