Brain-eating amoebas, internet info, and risk (oh my!)

Written by David Sullo MD

It was with great sadness that I read of the third case of Naegleria fowleri infection (the “brain-eating amoeba) this summer.  Death in children is always tragic, but especially so when it is so unexpected and brought on by something so innocent as hitting the local swimming hole.

As a physician, I expected parents to be asking about it in the coming days and weeks, so decided to educate myself.  I thought I would write how I went about it, and how I think about it, as there are some good things to be learned about how to find medical info AND interpret it.

My first stop was to Wikipedia for some general info on the bug itself:

http://en.wikipedia.org/wiki/Naegleria_fowleri

Interestingly, it isn’t actually an amoeba as billed in the press, but that’s a tangent.  That then led me to the CDC website, which had more specific information on the actual rate of infections, possible treatments, and prevention strategies:

http://www.cdc.gov/parasites/naegleria/faqs.html

So in the end, there’s a couple of things to say:

a) Get your info from reputable sites.  Note I did not use a site that says “BRAIN eating AMOEBAS can KILL YOU!  Buy our nose spray and you’ll be protected!  Our nose spray is scientifically proven to block all amoebas!”

b) Some things are just tragic.  The CDC site makes an important point, which is that over 10 years there’s been 32 cases of this disease, but millions of people have gone swimming in these same places and NOT gotten this disease.  We’ll probably never know why these very few kids get the disease and the vast majority do not.

c) Modern medicine doesn’t have all the answers, yet.  This disease is almost uniformly fatal because it often is not recognized as Naegleria until late in the illness (or even post-mortem), and there is not a good treatment even when it is diagnosed early.  If we can develop better methods of detection and better treatments, the prognosis for these kids may improve.

d) Educate yourself.  The vast majority of cases are in southern states, in fresh water, and usually in warmer water (hot springs, etc).  There’s been only one case in a northern state (Minnesota).  So if you are going to the beach for a week on the Jersey shore, you can relax.

e) Take reasonable precautions.  You can 100% avoid this by never swimming again, but that’s not what I would call reasonable.  The CDC suggests this:

  • Avoid water-related activities in warm freshwater during periods of high water temperature and low water levels.
  • Hold the nose shut or use nose clips when taking part in water-related activities in bodies of warm freshwater.
  • Avoid digging in, or stirring up, the sediment while taking part in water-related activities in shallow, warm freshwater areas.

f) Remember what’s important.  Remember the 32 cases in 10 years noted above?  In a typical 10 year span, there are 36,000 drownings in the US.  Drownings don’t make national headlines like brain-eating amoeba do, but your child is literally 1000 times more likely to drown than to catch Naegleria.  So don’t lose sleep over the brain-eating amoeba but then take your child on a boat without a life jacket.

I hope this glimpse into the brain of a pediatrician was helpful.  I would also like to extend our sincerest condolences to the families of these children; we can only hope that  the increased public awareness from these cases leads to work on an effective treatment.

Dr. Sullo is a pediatrician at Genesis Pediatrics in Rochester, New York. He admits to having gone to computer camp in 5th grade when everyone else was playing baseball, and is an “Apple Fanboy.” He does his best to offset the geekiness by throwing in some winter backpacking.

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2 thoughts on “Brain-eating amoebas, internet info, and risk (oh my!)

  1. David,

    Thank you for a wonderful post on a very timely subject. I particularly liked your use of it to make an excellent point about the concept of relative risk and how we often fear things which are very rare and at the same time become complacent about things that are much more common. Well done.

    Jon Caine MD

  2. Thank you for your clear-eyed post on this parasitic infection, and especially for your kind condolences for we who have lost children to it. What I hope for is that increasing awareness among first-line physicians will increase the likelihood of inquiring about the risk factors you mention (adding now, neti pot use), seeking the diagnosis (which may mean picking up a phone to inquire about diagnostic tests that might not be available to a local hospital laboratory, but might be available through CDC), and increased consideration of autopsy in unexplained or unusually fulminant cases of meningitis. More diagnoses mean greater attention to research in early diagnosis and treatment; miltefosine and chlorpromazine, oddly enough may be highly effective, but we need more research. I cannot bring my son back, but it is my hope to see a rapid diagnostic tool and a cure in my lifetime. Thanks for spreading awareness. Every bit makes a difference.
    Warmly,
    Sandra Gompf, MD, FACP, FIDSA
    http://www.gompfsidpearls.net/amoeba-awareness-in-memoriam/
    http://www.gompfsidpearls.net/infectious-bytes-the-blog/

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