ORLANDO, Fla. — Clinicians and specialists were in Orlando Friday for Amoeba Summit 2016, a national and international movement to end deaths caused by the so-called brain-eating amoeba.
Naegleria flwleri, also called the brain-eating amoeba, is found in warm freshwater and has a fatality rate of more than 97 percent.
In the past 50 years, only four people out of 138 have survived being infected with the amoeba, including a South Florida teen who was successfully treated in August.
Sebastian DeLeon came to Florida Hospital in early August with a sensitivity to light and a headache so severe, the 16-year-old couldn't tolerate anyone touching him, doctors said.
Hospital staffers had been trained to look for the amoeba, which often is contracted through the nose when swimming in freshwater lakes or rivers.
DeLeon, who had worked as a camp counselor in Broward County, was infected in South Florida.
He began having a severe headache the same day his family traveled to Orlando for a vacation.
His parents took him to the emergency room at Florida Hospital almost a day and a half later, when his headache worsened.
Acting on a hunch, emergency room doctors ordered a spinal tap to test for meningitis, and lab scientist Sheila Black found the amoeba moving in the spinal fluid.
Doctors lowered the teen's body temperature, induced a coma, inserted a breathing tube and gave him a cocktail of drugs that helped kill the amoeba.
One of the drugs, miltefosine, isn't readily available at most hospitals.
"When the family came to me, I had to tell them to say their goodbyes," said Dr. Humberto Liriano, who choked up as he described the case. "I had to tell them, 'Tell him everything you would want to tell your child, because I don't know if he will wake up.'"
Luck was on DeLeon's side, since the manufacturer of miltefosine is based in Orlando, and a shipment got to the hospital quickly.
"This infection can be rapidly fatal. Minutes count and having the drug rapidly at hand ... is crucial," said Dr. Federico Laham, a hospital pediatrician specializing in infectious diseases.
Because the amoeba infection is so rare, the Centers for Disease Control and Prevention typically flies the drug miltefosine to the patient. But in DeLeon's case, a hospital pharmacist called the chief executive of the Orlando-based company that manufactures the drug, and the CEO's son dropped it off at the hospital within minutes.
DeLeon spoke to the crowd via Skype during Friday's conference.
"I didn't know I had it until I woke up from the coma," he said. "I thought I had a migraine, and now when people tell me, I'm like, wow."
Aside from some numbness in his toes, doctors say DeLeon has made a full recovery.
“I get to sleep in my bed now, and I get to see my dog too,” DeLeon said.
Amoeba Summit 2016 was presented by Florida Hospital for Children and was created by the Jordan Smelski Foundation for Amoeba Awareness.
The organization was founded by Steve and Shelly Smelski to raise awareness about the dangers of the brain-eating amoeba, and the condition it causes, primary amoebic meningoencephalitis.
Speakers at the event, which was scheduled to run from 8 a.m. to 2:30 p.m. at Florida Hospital Church, included an infectious disease specialist, an expert in intensive care and an epidemiologist.
Cox Media Group
