( UPDATED August 27, 2013 ) A 12-year-old boy in LaBelle, Florida, with primary amebic meningoencephalitis (PAM) was removed from a ventilator and his organs were harvested for donation, his family announced today.
The boy, Zachary Reyna, had received miltefosine, an experimental antibiotic now available from the Centers for Disease Control and Prevention (CDC) for patients infected with a free-living ameba (FLA) called Naegleria fowleri, also known as the brain-eating ameba.
On August 21, the boy's father, Jesse Reyna, wrote on a Facebook page dedicated to his son's struggle that the N fowleri ameba responsible for the deadly infection was showing "negative activity," which was promising. Nevertheless, Reyna cautioned that the ameba had extensively damaged the boy's brain. An examination for brain activity was scheduled for the morning of August 24.
A Facebook posting later that day said that Zachary Reyna had "passed" and that the parents had decided to donate his organs to others. Family and friends were invited to see him at Miami Children's Hospital while he was kept on a ventilator.
"The battle is over for Zac, but he won the war," Jesse Reyna said in another Facebook posting on August 24.
Shortly after midnight Monday, the family stated on Facebook that just a few hours earlier, "Zac began his journey to save lives. Zac donated all his organs to others that were waiting on a miracle. Through donating his organs, Zac is living on."
Another Child With PAM Is Now Writing Her Name
The ameba N fowleri is found in warm freshwater and hot springs. It typically infects someone after contaminated water goes up his or her nose. From there, the ameba travels to the brain to inflict PAM. Zachary had knee-boarded in a water-filled ditch before contracting the infection.
Of the 128 individuals in the United States known to have PAM from 1962 through 2012, only 1 survived, according to the CDC.
Another 12-year-old, this one in Benton, Arkansas, is shaping up as another survivor in 2013. Kali Hardig fell ill with PAM in July after swimming in a spring-fed water park. Treated with miltefosine and cooled below her body temperature, Hardig has bounced back to the point of saying "Hi Mama," writing her name, walking with assistance, watching television, and tossing a basketball, according to a Facebook page about her condition.
On August 22, the CDC announced it is making miltefosine available to patients with PAM from a stockpile at its headquarters in Atlanta, Georgia.
The antibiotic, manufactured in Germany, is marketed in other countries to treat leishmaniasis, a potentially fatal infection spread by sandflies. The US Food and Drug Administration (FDA) is reviewing an application to market the drug here for this indication.
The FDA, in conjunction with the CDC, has allowed clinicians to import miltefosine as an investigational drug on a patient-by-patient basis to treat various FLA infections since 2009. When combined with other antibiotics and antifungals, miltefosine has helped some patients survive a FLA infection called granulomatous amebic encephalitis, which is caused by Balamuthia mandrillaris and Acanthamoeba.
Miltefosine has proven itself a slayer of N fowleri in vitro. However, the CDC says miltefosine, in combination with other drugs, has not saved anyone from PAM through 2012 because the condition develops much more rapidly than other FLA infections and the imported miltefosine does not arrive in time for prompt treatment.
To get miltefosine to patients sooner, the CDC worked with the FDA to expand the drug's investigational status so it is directly available from the CDC stockpile whenever it is needed. The agency provided the miltefosine that Hardig received in combination with amphotericin B, rifampin, fluconazole, and azithromycin. Clinicians administered the same drug cocktail to Zachary Reyna.
Physicians who suspect that a patient is infected by N fowleri or some other FLA can call the CDC at 1-770-488-7100 about diagnostic assistance, specimen collection guidance, shipping instructions, and treatment recommendations.
More information on PAM is available on the CDC Web site.
Medscape Medical News © 2013 WebMD, LLC
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Cite this: Boy With Brain-Eating Ameba Has 'Passed,' Says Family - Medscape - Aug 26, 2013.