My Daughter Had Lyme Disease: Was it My Fault?

I spent New Year’s Eve 2007 in the emergency room with my seven year-old daughter. For several days she had been complaining of an achy knee. The day before she had been limping around the house. And by late afternoon on New Year’s Eve, she could barely stand up. I rolled up her pant leg to find her knee swollen to twice its normal size – and it hadn’t looked like that the evening before when I helped her with her bath. I had no idea what was going on and since it was a weekend, it meant a trip to the ER.

In the emergency room, they sedated her and withdrew fluid from her knee. It showed signs of intense infection, but the doctors had no idea what it was from – maybe a freak occurrence, maybe pediatric arthritis, maybe immune dysfunction – it was a mystery. The one thing they did know was that she needed emergency knee surgery to clear out the bacteria infested fluid so it wouldn’t eat away at her bones. I welcomed in the New Year sitting alone in a hospital room, terrified for my little girl.

After her surgery, she was admitted to the hospital where they pumped her body full of a wide spectrum of antibiotics to kill anything and everything until they knew exactly what they were up against. She was in a wheel chair. She was connected to an IV. She was getting needles stuck into her over and over as they performed test after test after test. It was every parent’s nightmare. Nothing makes you feel as vulnerable as when your child is in pain, especially when you have no idea why or what’s to come.

Fortunately, there was a brilliant epidemiologist on staff. She had never visited my daughter’s room, but she received every patient file in the hospital to watch for trends. She saw my daughter’s file and knew right away that it was Lyme Disease, an infectious disease spread by black-legged ticks that can, if left untreated, spread to joints, the heart and the nervous system causing chronic pain and debilitation.

Other doctors that checked out our daughter had considered Lyme Disease, but since we live in the middle of a large city and she never had the tell-tale bulls-eye marking most victims get after being bitten, they quickly wrote it off. The epidemiologist, hidden away in her office, knew it was “Lyme Disease season,” a period about 3 months after peak tick season when people start showing up at the hospital with odd infections. She ordered the test for my daughter and it came back positive. After a week of tests with no answers, we finally knew what was going on – and, luckily, they caught it early enough to cure it.

Ironically, the previous summer we had done much less camping and hiking than we usually do. We had only left the city twice and it wasn’t to camp or hike. We visited two houses in the country. We had one walk through a prairie. And, like so many times before, I relied on natural bug repellants because after years of researching toxic chemicals, there was no way I was going to spray DEET on my babies.

So, was it my fault that my daughter caught Lyme Disease? Did I knowingly put her in harm’s way? I thought I was reducing a health risk. I had no idea I would be opening her up to another one.

After your child gets something like Lyme Disease, your risk-benefit spectrum gets turned on its head. The epidemiologist advised us that the risks from DEET were far less than the risks from Lyme Disease. I can’t say I think it’s quite that simple. Since the world has become such a chemical soup, I think reducing all exposures is important. It might not be the case that using DEET alone may cause something as horrible as Lyme Disease, but DEET mixed with phthalates mixed with bisphenol-A mixed with methylmercury mixed with dioxins (all common everyday exposures) may create a tipping point in my child’s development. No one really knows what’s going on anymore, so I feel strongly about eliminating as many chemicals from our family soup as I can.

Still, Lyme Disease can be very serious and the incidence is on the rise, among other infectious diseases transmitted by insects – a trend expected to continue as climate change warms our world and makes it more hospitable for bugs. So, what do I do? I’ve introduced DEET back into my home, but I use it very judiciously. I have other options and I choose bug repellants based on each particular situation. I rely on natural repellants like Bite Blocker for low risk environments like the neighborhood park and I have my DEET-based repellant for camping and woodsy hikes. I don’t use anything if the bugs aren’t bugging us (which may or may not be wise given it only takes one bug to spread an infectious disease) and I take simple physical precautions all season long, like:

  • wearing light colored clothes to cover skin and hats to keep ticks out of my girls’ thick hair;
  • staying indoors when bugs are at their peak playtime (dusk);
  • using my local public health department’s website to find where infectious disease hot spots are;
  • doing full body tick checks after hikes; and,
  • changing clothes and bathing immediately after returning indoors if we’ve used any bug spray.


This is what I do. It may not be right for you. But, it’s a good example of how we need to constantly weigh the factors in our environments. Which insect repellant is right for your kids?

Do you have any tips, tricks or stories to share?

Published on: June 30, 2009
About the Author
Photo of Janelle Sorensen

Janelle Sorensen is the Chief Communications Officer for Healthy Child Healthy World. She is passionate about creating a healthier environment, not just at home for her own children, but for everyone’s children.

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