My Toddler Has Lyme Disease

MomSpeaker Sandra Telep's post about her not-yet-2-year-old's recent Lyme disease diagnosis came just as we finished editing a story about the bug-borne infection for our upcoming June issue. Zoe's symptoms — or, more to the point, lack of telltale symptoms — bears out the inherent difficulties in diagnosing this condition in children. We're glad that Zoe's well on her way to recovery and will continue to update information about Lyme, which is indeed a rampant problem in the Delaware Valley.

Last month Zoe was diagnosed with Lyme disease. It began with a limp. She woke up one morning and was walking favoring one leg and not bending the other. Initially I didn't think much of it, but as it persisted throughout the day I emailed our doctor. I didn't hear back until the next day (when we were already on our way to Pittsburgh for Easter weekend) and she recommended going in to the ER for X-rays to rule out a fracture.

So Saturday of Easter weekend we spent the day in the Pittsburgh Children's Hospital Emergency Department. Zoe was trooper for the intake, interviews and even the X-ray. When the images came back ruling out a fracture, the doctor asked if we wanted to run some blood tests to rule out other possibilities — mainly an infection. She said that she suspected juvenile rheumatoid arthritis and didn't want to stick a small child with a needle unnecessarily, but that it would be the best way to cover all our bases. My thought was that if we are at the hospital over this, I didn't want to leave room for doubt — so my poor baby had to endure a blood draw.

The tests all came back negative, except for the test for Lyme, which would take a few days get results. The doctor told us that frankly, she's be shocked if it was Lyme, so we should go ahead and schedule a follow-up appointment with a rheumatologist to confirm and manage JRA. We asked around and made an appointment for as soon as we returned to Philly at the CHOP pediatric rheumatology center.A few days later (we were still in Pittsburgh), we got the call confirming that Zoe's blood test had, in fact, come back positive for Lyme. Zoe was prescribed a 28-day course of antibiotics three times a day. Within 24 hours of starting the antibiotics her limp was nearly gone. She's about halfway through the treatment now, and we are hopeful that she will make a full recovery and Lyme will be behind us.

We don't recall her being bitten by a tick, but she did have a rash just over a year ago. We took her to the doctor and she was diagnosed with nummular eczema.  In retrospect, I wonder if it wasn't a disseminated Lyme rash. She had dozens of rough ring-shaped rough blotches on her torso. Though how my pre-walking, city-living infant got Lyme in the dead of winter last year is anyone's guess.

The reactions we get when we share that Zoe has Lyme tend to fall into one of two camps:

  1. Oh, that great! That is very easily treatable and not a big deal.
  2. Oh, wow, I'm so sorry. That is a life-changing diagnosis that is very serious and you may be managing it for the rest of her life.

The more research I've done, the less clear things have become. I suppose only time will tell how severely the bacteria affects Zoe specifically. So far, she seems to have her youth on her side. She never stopped moving — climbing, running, jumping. Her spirits have been good, she's been eating well. Our friend who's a naturopath suggested we balance the antibiotics with some probiotics, and I really think that's helped keep her tummy comfortable. Basically, we are remaining optimistic and trying to pay close attention to any complaints she might have (which is tricky with a moody, preverbal toddler). I'd love to hear about anyone's experience with Lyme – especially in young children.

Sandra Telep is a West Philadelphia mom of two. This post is adapted from her blog, West Philly Mama.

Categories: MomSpeak