Batty (mis)adventures: What we learned about rabies post-exposure prophylaxis
When sh*t happens at a really inopportune time and place
It was the July 4th holiday. Almost everything’s closed. We are 3,000+ miles away from home in a remote area of Washington state. And we needed answers to a high-stakes question — fast! This was our experience recently, and I quickly put my Life Wife skills to work — generating the right questions, evaluating assumptions, determining the right experts, consulting them, researching options, and making a plan. All because of a bat.
What started as a laugh…
Wildlife has a way of finding my family, and we generally accept it as fodder for a good story, though I wish they’d magically clean for me like in the Disney movies. We routinely find hummingbirds in our garage, we’ve had a snake in our bathroom, a bird in our kitchen, a mouse in our screened in porch, a bear in our minivan, and even a swarm of bees making a hive in the walls of our house. So when we saw a bat flying around our Airbnb while on vacation, we felt somewhat in our rural living element. Nature came to say hi. No harm, no foul. Or at least that's what we thought.
I told the Airbnb host promptly, she said it never had happened before, and she shared the Ring doorbell footage with me, complimenting our relatively coolheaded response. I post this footage with a warning that you will hear expletives. Viewer beware.
After posting this video (and lots of other photos and videos of our trip) on my personal Instagram and Facebook, a wise, medically-inclined friend shared that this was something to take much more seriously - that there was a chance the bat could have been in the home the previous night when we were sleeping - that we could have been scratched or bitten without our knowledge - that we might have to start rabies post-exposure prophylaxis (PEP) soon.
…quickly turned to worry and dread.
I had heard terrible things about the rabies PEP protocol and just KNEW at least one of my my shot-averse children would lose their ever-loving minds over this news - not to mention an unknown and potentially astronomical cost, so I kept it under wraps from the littles and began researching. This included extensive research, reading the CDC guidance, speaking with our pediatrician, poison control, emergency room staff, health department officials in two states (where we were visiting and where we lived), friends who knew people who had received the PEP treatments, and other medically-inclined friends in our network (thank you ALL!).
Important disclaimer!!
While I do have my doctorate, I am NOT a medical doctor. I will share key information I learned (and cite my sources), but PLEASE consult local officials and trusted experts where you are, as no two stories are the same — and guidance may change over time. That said, I do want to share what I learned in the event it can be a helpful starting point for someone else experiencing the same fear.
Questions asked to make a sound decision:
Did the bat appear to be rabid?
From our observations relative to CDC information on rabid bat behavior, it could fly just fine (rabid bats sometimes flop around confused and cannot fly), and it was not aggressive, but it may have entered the home and gotten trapped during the day (bats are noctural, so if the bat did enter during daylight hours that would be odd). In the area where this occurred, daylight lasted until around 9:45pm, and we found the bat around 5pm. Hmm…
Can we know for sure the bat wasn’t in the house when we were sleeping?
No. While we don’t think so, given that we occupied every room in the house and cleaners had been through the place with no sightings, we cannot be sure.
Would we know if we were bitten or scratched?
The Cleveland Clinic and the CDC concur — you may not have any marks at all from bat bites or scratches. This blew my mind.
How soon do rabies symptoms appear in humans?
According to the World Health Organization, symptom appearance depends on the location of the bite/scratch and the viral load, but typical is 2-3 months with a possible range of 1 week to 1 year! Cedars Sinai reports early symptoms can be vague in stage one, looking much like the flu. This would mean I could be on high alert for any sickness in my family that might be rabies for a long time to come. I hated this possibility.
Is there a test for rabies available?
While the CDC website lists tests to determine if humans have rabies antemortem (before death - as the most conclusive way to know is to test brain tissue after death), my health care providers could not find any such tests they could order to determine this. Our assumption is that this is in laboratory research settings and not in practical settings. Eek! Not knowing really freaked me out.
Is rabies fatal?
Yes. Almost certainly, says the CDC, without timely medical care.
At this point in my research, I knew we absolutely had to get the rabies PEP shots, as I could not imagine telling my children that they had an incurable illness that we could have prevented. This information made things very clear to me — that regardless of what I needed to do to get it, we would access it. I’ll flag that this decision was informed by lots of privilege — that we have good insurance and worst case scenario — we could recover from a very large medical bill if push came to shove. I don’t want to make light of these factors, but they were very relevant to our decisionmaking. Soapbox moment: I believe health care is a human right and individuals should not have to forgo life-saving medicines because of their income. Almost every other developed nation has figured this out, and yet, ‘Merica. Sigh. Happy 4th of July irony moment.
How soon do we need to begin the rabies PEP?
Our amazing pediatrician, Dr. Seliskar engaged with folks at our local children’s hospital back home, reporting to us we had 3 - 4 weeks after exposure to begin the regimen, allowing us to enjoy the remainder of our trip without interruption. Since the rabies PEP involves a series of medical visits, we also saw great merit in receiving care at in-network facilities near our home. Starting the series one place and transferring the prescriptions across state lines and health systems felt like a logistical (and potetially) financial nightmare we were able to avoid.
What is the cost of the rabies PEP?
We still don’t know for sure. I’ll report back after I receive our explanation of benefits, but estimates varied wildly. And I mean wildly. The National Institutes of Health says the average in the U.S. costs $3,800 per person; NPR cites the medication itself costs between $4,800 and $5,900 per person, not including fees from the medical facility where its administered; WAMU reported the first treatment alone can cost more than $15,000 per person.; and a friend in my community said her explanation of benefits charges totaled $80,000 for four family members. Did I mention I have a family of 5? I started getting dizzy thinking about this.
Would insurance cover this?
Unsurprising to you I’m sure (cue soapbox from earlier), my insurance company did not give me any specifics when I called. I purposely asked if they had a preferred place for me to go with negotiated rates to save both the company and me, the patient, money. They said they did not have a preference, but that going to in-network providers would be the best way to mitigate uncontrolled costs. Thanks for nothing.
Where do we go to get the rabies PEP?
In my area (Central Virginia), the first part of the rabies PEP needed to be given at an emergency room (should out, St. Mary’s Pediatric Emergency Department). I called ahead to ensure they had ample dosing for five people before we went. I learned from a friend that she was able to get the remaining vaccinations at a local urgent care, Patient First, and we too went this route for our later shots.
What is involved in the rabies PEP?
The CDC’s Advisory Committee on Immunization Practices (ACIP) recommendations:
Wound care. This wasn’t relevant to us since we didn’t have any obvious bites or scratches.
A weight-based dose of human rabies immune globulin. My 65 pound child needed one shot of this, whereas the rest of us received one shot in each thigh with thick, painful serum. Cue lots of kid tears.
And a rabies vaccine, given the day you come in to the ER (day 0) as well as additional doses on days 3, 7, and 14 after the first dose. The vaccine involved just one shot in our arm each time, alternating which arm between visits.
The nightmare stories I had feel like I had heard (painful shots in the abdomen, etc.) were from older recommendations, seemingly no longer in use. Phew!
What are the side effects of the rabies PEP?
The immoglobulin and vaccine have been in use since 1980 and is considered safe and effective. NYC Health reports the minor side effects included pain, redness, swelling, or itching at the injection site, or a low-grade fever. Rare symptoms include headache, nausea, abdominal pain, muscle aches and dizziness. In the case of my family’s experience, the immunoglobulin shots were moderately painful and required us to work our legs a lot to reduce that pain, but the vaccines administered in our arms involved just a short pinch. No side effects to report.
What do I wish we would have known or done differently?
On one hand, I wish we had thought to trap the bat so it could have been tested to rule out rabies and potentially save us the rabies PEP series. On the other hand, it was July 4 and I can’t imagine animal control would have been prompt to get to us in an Airbnb in rural Washington, and I think we could have definitely been scratched or bitten had we tried this on our own. So overall, I think we did the best we could with the information we had access to.
OK, taking deep breaths, waiting for the bills, and focusing on gratitude for how this all has worked out.
When sh*t hits the fan and you need a thought partner or research support, let me know.
This is life. We are dealt weird hands and we have to respond. And chances are, you’ll be dealt a weird hand one day too. In the event that happens, know you don’t have to navigate big decisions alone. At Laura Kassner Consulting, our suite of Life Wife services reduce your mental load and stress. In the big things and the little things, we are here to support you. Shoot me an email or set up a time to connect if you could use help asking the right questions and researching paths forward related to something worrying you.
