Sunday, May 4, 2014

My Toddler Has Lyme

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 our 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.

Children's Hospital of Pittsburgh provided exceptional care

Brave baby lays still for her X-ray
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 half way 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 and 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, pre-verbal toddler).  I'd love to hear about anyone's experience with Lyme - especially in young children.


  1. Stacey Wacknov5/05/2014

    No advice to give, except that your friend's rec re: probiotics is spot on. Live culture yogurt is fine -- you don't need to shell out for fancy-pants probiotics supplements. Hugs to you all -- Zoe is a trooper and she'll get through this just fine. xox

  2. Thanks :) We are doing both, the chewables and yogurt daily and trying to give them as far from the antibiotics as possible - which is tough with three doses a day for a kid that is barely awake for 12 hours/day.

  3. I hadn't heard that advice, thanks for sharing. Tough to stay out of the sun on these gorgeous spring days, but will be sure to keep hat, long sleeves/pants, and sunscreen on her.

  4. jaclyn6/05/2014

    I just moved to the neighborhood and came across your blog. I am an adult with Lyme ... I am happy to be a resource if you would like to talk about treatments and recovery.

  5. Hi Jaclyn, Welcome to the neighborhood! I'd love to connect. Conversations we've had with others living with Lyme have been super helpful and I'm always game for meeting a neighbor. You can email me at sandra "at" Looking forward to it!

  6. Angelina8/06/2014

    Hi there, my two year old was just diagnosed with Lyme (we think Early Disseminated stage, maybe bit 2-3 months ago) and prescribed 3 weeks of amoxicillin twice a day, but I'm thinking of adding a 4th week. I know your Zoe had 3 times a day for 4 weeks. How is little Zoe doing now? I hope she has made a wonderful recovery!! I am so overwhelmed by all the info and it is scary. :(

  7. As far as we can tell, Zoe is doing great. We haven't noticed any symptoms arise since the antibiotic course. I hope the same for you!