A Mother's Story of her Daughter's Lyme Disease Journey - Children and Lyme Disease
Our family has been on this journey since 2017, without even knowing we were on it. Our daughter, Olive, has always been a healthy, robust child. She was 9 that summer, when I found a tick on her stomach. I quickly removed it and didn’t think of it again, until a few weeks later when she became sick. She woke up one morning with a high fever, headache, and eventually, we found a bullseye rash around the tick bite. I took her straight to Urgent Care, where she was given a two week dose of Doxycycline and we were told, “She should be all taken care of!”. We trusted that.
Fast forward to May 2020. We noticed a small circular rash on Olive’s cheek, and treated it as ringworm. Over the next few weeks, she just felt unwell. She woke up with a fever one day. A headache and earache the next. Another rash on her leg the next day. She complained of knee and ankle pain. Her headache would come and go, and she eventually developed neck pain. One day, she woke up with a high fever, severe neck pain, and over 30 bullseye rashes all over her body. We still didn’t think Lyme! Of course, being a mom, I googled her symptoms and was convinced that she had bacterial meningitis. I rushed her to the nearest Pediatric ER. We were there all evening, and the doctors seemed puzzled about her rash. While waiting in the room, her face started drawing up on one side. I thought she was having a stroke! After some bloodwork and consultation with the infectious disease doctor, they determined it was a tick-borne illness. I had told them about the tick bite in 2017, but they were insistent that she had been recently bitten. They sent us home, again, with a two week dose of Doxycycline and recommended for us to follow up with her PCP.
Over the course of the next few weeks, Olive’s face became worse. She had Bell’s Palsy, which I now know is a symptom of late stage Lyme. The medicine seemed to reduce her neck pain and headaches, and the rash cleared up. Her face, eventually, returned to normal as well. However, after she finished her antibiotics, her headache and neck pain came back. We were confused. Her final test results from the ER visit had come back, and she was positive for Lyme antibodies. So why had the antibiotics not worked? Over the next several months, she developed headaches, nausea, severe joint pain, brain fog, numbness in her legs and arms, hand tremors, and even a stutter. She experiences all of these symptoms daily. This has been going on now for eight months.
After countless nights researching Chronic Lyme, I came to a realization. This was not a new tick bite. She had not been treated properly years ago, and she’s been sick ever since! Looking back over the last several years, I realize that Olive has tried to tell us over and over that she has not been feeling well. Whether it was a headache, a stomachache, or fatigue. Attention problems or Joint pain. Once, on a hike in 2018, she exclaimed, “Shoo, I think I have arthritis! My ankle and knee hurt!”. At the time, we thought that was the cutest thing. We even teased her a little about it. Now, I realize, she does have arthritis. She IS sick, and has been for almost four years. One small tick has completely changed our healthy little girl’s life.
There are so many things that I wish I would have known back in 2017. One, that there was a chance that a two-week course of antibiotics would not treat Lyme. Had I known that, I would have pushed for more treatment. I wish I had known that most doctors are not educated about Lyme, and almost all doctors don’t recognize Chronic Lyme. I also wish that I would have listened to Olive for the past few years. I wish I would have taken her symptoms seriously. If only I could have connected the dots!
My advice to any parents dealing with this terrible disease, is to pay attention to your child. Listen to what they are telling you. They know when something is wrong, and so do you. Be patient and attentive to their needs. Implement a healthy diet and exercise. Movement might not always be easy for them but even the smallest amount of exercise can help. Trust your instinct and push for treatment, if needed. Find online support. Do your research. Share that research with the doctors. If they won’t listen, find a doctor who will.
We are now trying to treat Olive naturally, at home. Have you looked into how expensive an LLMD is!? There has been some good that has come out of her sickness. I have met some amazing people, mostly through Facebook support groups, who are suffering just like her, and they are always there to give great advice and encouragement. There are so many wonderful resources, like Lyme Warrior, that have helped me to feel validated and supported. While I wouldn’t wish Lyme on anyone, I am grateful that there is an entire community out there that can empathize with our journey.