The False Labels of Naegleria

Yesterday, I almost had to pull over while driving because I couldn’t stop the tears.  Another life is gone.  Another child will never grow up, graduate, fall in love or celebrate life again.  Another set of parents is heart-broken and for a while, simply broken.  Another fresh round of grief and sadness.  Sleepless nights.  Dreams eerily twisting together a fictional comfort of life-complete again and the agonizing reliving of a child’s last days.  Another family will spend mornings waking up wondering for a fraction of a second if it was all a bad dream, before the horror of reality grips the stomach like a vice and the onslaught of tears begins anew.

It has been five years since Marissa died.  Five years.  That’s a long time to carry on life without your child; or in our case, my daughter’s best friend.  So many people have died from Naegleria fowleri since Marissa died, that it is finally hitting major news.  Naegleria, the actual organism, and the ensuing PAM (primary amoebic meningoencephalitis,) the disease it causes in the body, are both becoming better known.  More people have heard of it.  More doctors have at least heard of it and possibly read a few case studies about it.  Despite this, many people are still dying each summer.  This summer, all the reported cases have been children.  But it doesn’t have to be.

 

Along with every new death, there are some labels thrown around that I, personally, would like to eliminate. 

Label 1:  Extremely Rare

With every news report, there is at least one quoted government official or a clip from the CDC website about how “rare” Naegleria fowleri is.  This is a misnomer.  Naegleria fowleri is considered rare because many cases are misdiagnosed.  It is rarely heard of, but that does not make it rare.  In fact, the organism is present in nearly all bodies of fresh water.  It lives in soil worldwide, even the dirt in your front yard or the soil around the old, leaky pipes leading into your house.  Naegleria is only deadly when this fresh water is somehow inhaled.  This can be from playing in the water, choking on the water and having it come up your nose, inhaling bath water, or using tap water in a Neti Pot for nasal irrigation.  Naegleria is very common.  Awareness of it is what is very rare.

Label 2: It Is Only In Stagnant Water

Even after five years of learning about this, talking to others to make them aware, and writing articles about it, my own brother was mistaken on this point.  We got together this summer to take our combined families on a camping trip in the awesome state parks of Arkansas.  We brought kayaks and fishing equipment to use the park’s lake but we reminded him ahead of time that none of us, including his family, would be swimming in the lake.  He understood and completely agreed, but when we found a creek to play in to escape the summer heat, he said, “It’s okay for the kids to swim in moving water like rivers and creeks, right?” 

Wrong!  Again, Naegleria fowleri lives in soil everywhere and is in almost all fresh water sources.  If the water temperature is near 80 degrees, which is very common in the intense summer heat, the amoeba is alive and looking for a host to kill.  There are several documented cases of people contracting Naegleria from streams or rivers.  During cooler times of the year, Naegleria is often alive in warm water coming out of hot springs or power plants located on lakes and rivers.  Tap water as well, should not be considered 100% safe.  It is not stagnant water, but in two documented cases last year, Neti pot users died from the amoeba living in their tap water. 

Label 3:  Just Don’t Put Your Head Under Water

While this one can be true in some cases, I would not gamble my child’s life on this notion.  The only sure way to avoid Naegleria is to avoid playing in fresh water that is 80 degrees or above.  Nose clips and masks can be faulty.  Clips can slip off in the middle of an underwater somersault.  A mask can slowly leek water that eventually settles right in the nose piece.  If anyone is insistent about fresh water play during the summer time though, I beg of you, choose one of these options.  Using something is much better than ignoring warnings altogether.  Most likely your efforts will be rewarded with fun and safe summer play.  If you can do like us though and find other ways to enjoy fresh water with your kids, then by all means, dig out the fishing poles or rent a kayak for a day.  It is better to catch dinner than to catch a deadly amoeba.

Label 4: It Won’t Happen to Us

For whatever reason, this is the most common reason that many people ignore our warnings.  I have some theories as to why this is the case.  For starters, many parents are so afraid to even consider the possibility that their child might die, that they simply avoid thinking about it altogether.  PAM is not like the concepts of Stranger Danger, or Drugs are Bad, or Stop, Drop, and Roll that we were all taught as kids.  Naegleria is a new threat and in this day and age of thrill seekers and endless societal threats, it is often easier to stick with the list of familiar threats to try to combat. 

Another possible reason is that many adults have this preconceived notion that children don’t die; they are somehow immortaly blessed until they become teenagers or adults.  This may not be a conscious thought, but is more of a subconscious feeling that many parents cling to out of fear.  Unfortunately, we know firsthand that this is not the case.

Also, because Naegleria is touted by health officials as being so rare, many people choose not to worry about it simply because the government tells them not to.  If doctors are not pushing vaccines and officials are not warning people to stay out of all bodies of fresh water, much of the general public will go along in a blissfully ignorant state.  I believe that people should choose to educate themselves instead.  It is not the government’s job to raise our children and keep them safe; it is our job.  Now take your job seriously.

 

Unfortunately, PAM cares about none of these labels or excuses and Naegleria shows no mercy.  If you have the option of using fresh water sources when the temperatures are 80 degrees, make the right choice.  Do your job.  Save your family the agony and keep your children safe.

For more information or to support a great awareness campaign, check out Kyle Cares at http://www.kylelewisamoebaawareness.org/ or https://www.facebook.com/KyleCares.Awareness

Help Kyle’s parents, and the rest of us, spread awareness.  Help us all save the lives of children to come.

Comments

Hi there,

 

I know many people have this same question.  My general answer is that it is not likely that you can get it from having a bit of water splash up your nose.  NF can only get high enough to do its dirty work if water is forced or inhaled high up inside the nasal passages.  Usually a splash of water doesn't get it anywhere near where it needs to be to come alive inside of you. 

If I have ever splashed water up my nose, it is a fearful instinct that makes me instantly blow my nose out.  Not the most attractive thing to do in public, but in my own shower I figure I'm safe from ridicule. 

Hi, 

 

Our pipe burst in the main area of our complex. My water had turned brown from the soil/mud. It ended up clearing out and the next day (after the water had been brown but subsequently clear)... I was washing my face quickly and I know I got water way up my nose because it hurt my face. I splash the water over my face, but I had just dunked my face, nose first, into my cupped hands that had water in it. Usually I don't have enough water in my hands to let it get way high up in my nose, but this time I did. I felt it go up as I felt some pressure. Now my sinuses are acting up (but they have been for the last week or so). Anyways, I'm worried that I may have been exposed. It hasn't been too warm here, I'm in MD. Hasn't been higher than 75, and the last few days its been in 50's and 40's. I'm worried because the pipe burst and I know soil got in our system. Thanks for any help! 

Since learning about this amoeba I purchased a water thermometer and have resolved to not allow my children to swim in lakes where the temperature is 80 degrees or higher. I also got them masks and nose clips to wear even in cooler water. I don't want to take any chances, even though we live in Northern California and our lakes are mostly cooler in temperature.

I thought I had it all covered and then I started to read about this amoeba in tap water and hot water heaters (!). Our well water is usually very cold even in the summer so I don't know if I should worry, but my kids regularly put their faces under water while in the tub and now I am slightly freaked out about it. If I make sure to set my hot water heater to 140 are we protected? Again, our well water is usually pretty cold straight out of the tap, but I guess I'm worried about it being in the tap water. Thanks!

Sarah

Hi Sarah,

 

I completely understand your concern.  In fact, I've had the same concern.  My children are older now, but I had to make it a house rule when they were young, that during bath time they only put their faces under water with a swim mask on.  It may seem ridiculous to some, but a concerned mother will go to great lengths, right? 

 

I am no scientist myself so I can only pass on the information that the professionals discover about naegleria, but here is what I found in answer to your question abotu heating the tap water:

 

PHYSICAL INACTIVATION: Heating water to 50ºC for 5 minutes will kill all forms of the amoebae Footnote 17. Both amoeba and cysts can tolerate temperature of 65ºC for 1-3 minutes and temperatures below 20ºC inhibit reproduction Footnote 15. Degradation occurs when temperatures reach below 10ºC. Dehydration is lethal to N. fowleri.  (The information was found on the Public Health Agency of Canada's website:  http://www.phac-aspc.gc.ca/lab-bio/res/psds-ftss/naegleria-eng.php)

 

I hope this helps answer your question.

Every summer, we wafers kids on my father in law's lake. I insist on my daughter Keeling her head out of the water but my husband's family grew up on lakes and tell me I'm paranoid and that a spring fed lake in May is safe. I am terrified of NF and wait in fear everytime my husband and his family take the kids to the beach perimeter to play in the water because, invariably, one of the kids will accidentally go under water. I get accused of ruining a their fun. But there are few things in life that are incurable and guarante ed fatal so how is it unreasonable to be terrified of letting my daughter in the lake in warm months?!

We just returned from a trip overseas on Wednesday evening. While there there was lots of swimming and other water activites. My 6 year old son became very ill on Sunday night, extremely high fever that lasted thru Tuesday. On Monday he was lethargic, complained of his brain hurting ( headache). Yesterday I brought him into the pediatrician who put him on antiboiotics for a slight ear infection. He has been "symptom" free no fever, no headache, the only thing he expressed yesterday of was his legs shaking inside. I am concerned about PAM, all of his initial symptoms match those I have read about, however since he is currently symptom free, I am not sure what I can have him checked for or not. I have called the pediatrican again this morning spoke to a nurse who did not appear to know about PAM and expressed my concerns, I am waiting to get a all back. Am I being paranoid? Do some ofthe victims have a"healthy" period after initial symptoms and then fall ill again? I even called the CDC and they were notable to give me a answer regarding this... I appreciate any input you or your friend may have!

I would be crying tears of joy if I had a scare like that and now my child was symptom-free!  I cannot speak for any case other than that of our friends, but from the onset of the first symptom, there was never even a slight relief of symptoms.  Pain killers never even began to help the headache and all of the other symptoms just snowballed on top.  One after another.  Never letting up.  Always getting worse. 

From accounts that I've read from other parents and medical journals, this has been the same textbook description I've read about.  While I'm no doctor and cannot give medical advice, I would recommend you continue the conversation with your doctor even if it is simply to inform them of the potential for Naegleria fowleri.  It is my personal opinion that everyone should be aware of it.

 

Hi,

How deep does the water have to go for the amoeba to be able to penetrate through the nasal mucosa and head straight to the brain? Just a few hours ago while I was washing my face in the shower, I paused and a significant sprinkling of water landed in my nostrils and once I pulled my face away from the water sprinkle, I had a noticeable though not intense feeling of the pain that usually comes with water getting inside the nose. Can you tell me the risk of me getting the amoeba. I'm 100% sure that the water is at least chlorinated. I live in a temperate zone locale and it's currently winter here. 

Hi there,

 

From all I've researched about NF, the water forced up the nose or snorted/inhaled up the nose in order for it to make it deep enough for the amoeba to take hold.  Proper chlorination kills it as well.  I hope this helps.

Hi,

Fantastic website. Thank you for all the fantastic information. This is all new information to me, and I'm freaking out, as I was in a fresh water lake yesterday. I slid into the water gently (i'm 30 yrs old, so cannonballing in is in my past), but my nose did go underwater. Never will I do this again, but not sure what to do at this point. What are my odds? It is has been a little over 24 hours and no headaches...but I'm worrying about it so much at this point, my anxiety is just wrecking me. The silver lining to all this is my one year old did not go in yesterday (nor will he ever....). 

 

Thanks, and any thoughts would be greatly appreciated.

 

 

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