“Mommy, my knee hurts.”
The words stung me like the wind whipping on a cold, winter day in January.
If it was my youngest or my oldest child, I wouldn’t have given it a second thought. Unfortunately, it wasn’t. If my child didn’t suffer from chronic Lyme, it wouldn’t have been a big deal. Unfortunately, she does. And it is.
It’s because of those reasons my heart stopped for a moment, and varying emotions overcame me all at once. Any pain, any fever, anything out of the ordinary causes me to worry. So, two days after the knee issue, when Ella woke up with chest pains, too, my tears flowed freely.
‘Here we go again,’ I thought.
Our story with Lyme began nearly three years ago, but at the time we had no idea what was to come. My then 6year-old battled some debilitating headaches that caused her to miss some school. We saw a number of doctors, with varying specialties, and no one could pinpoint the cause. Then, one day they went away. There was no medicine given, no intervention of any kind; they just stopped.
A year later, the headaches remained at bay, but knee pain took its place. My husband and I shrugged it off for a bit, attributing the issue to growing pains and injury from sports. That was until one day she woke up and couldn’t walk. Off to the doctors we went, again, for testing and blood work, where Ella would be diagnosed with Lyme.
Since then, our lives have been forever changed. Since then, we learned just how scary, how unpredictable, and how little is known about this dreadful disease.
Ella has had more blood work done than most adults will in their lifetime. She’s nine. She’s been on so many medications and supplements that we need a large-size pill box to accommodate them all. She’s had so many ailments and missed so much school that, on multiple occasions, a regular tutor or home schooling have entered the conversation.
This past spring was her last round of blood work, in which we got the best results possible. Her Lyme levels, and the levels from the other Lyme-related diseases she’s had, were down considerably. It was good news that was met with enthusiasm, but also caution, as we’d been down this road before.
As it had been in previous years, the return of warmer weather puts her worst symptoms at bay. So, while we were overjoyed at the news, we weren’t holding our breath.
So, when there was a complaint of knee pain and chest pains in a matter of days, it was deflating, but not at all surprising. The discouraging part, for me, is how early in the season we’re seeing a recurrence of symptoms. The colder weather was here, briefly, but it’s feeling much like summer again in Rochester. So, why the spike in symptoms? Well, because it’s Lyme.
Those who suffer from the disease can certainly relate: Lyme rears its ugly head whenever it pleases. Sometimes you can prepare, but other times, you’re left reeling, and questioning, much like we are right now.
We’re now left wondering, as we always are, if we’re seeing signs of issues that will plague Ella in greater detail in the coming months or if this was just a fluke and the issues are completely unrelated to Lyme. This is nothing new. This is our normal now. We could feel sorry for ourselves that this is the hand our family has been dealt, or we can advocate for others and share Ella’s story with hopes of educating others to be more proactive in their own lives.
Tick checking is a must
The tick population is growing and there is no such thing anymore as an area near us that isn’t ‘prone to ticks’. It’s imperative that we are checking ourselves and our children as often as possible. The woods are not the only place to find them. They’re in our ball fields, our playgrounds, and yes… they’re in our backyards.
We were camping this summer and tick checks were mandatory for our family. While showering one day, I found a tick embedded in my groin area that I couldn’t get out without a pair of tweezers. The next day, my cousin found one on her daughter’s leg. The one thing that has stayed with me since then is their surprise of how little the ticks were. Thankfully for us, the ticks were sent on for testing and came back negative.
It’s important to know that these critters are sometimes smaller than a poppy seed. While checking the entire body is crucial, pay close attention to moist, dark areas like behind the ears, nape of the neck, groin area and armpits.
What to do if a tick is found
First and foremost, remove the tick in its entirety by pulling in the opposite direction than its embedded. Invest a few dollars in a tick-removing tool that will give you the greatest success rate for removal. The tick should be placed in a plastic bag and then sent on for testing. Visit lymedisease.org for more information on where you can send it.
Don’t wait for the tick results to come back before getting the person bit checked out, too. Often, people will wait. Often, doctors will tell a patient to watch for the signs. This is dangerous territory to get into, as signs are no guarantee. Lyme-literate doctors will typically recommend antibiotic treatment right away and for a minimum of three weeks. The quicker the potential issue is treated, the better the results.
Know the signs
Finding a tick is the first sign there may be an issue, but roughly half of Lyme sufferers never recall being bitten. Such was the case with my daughter. We never found a tick, nor did we see any other signs associated with Lyme. That said, if any of these signs do present themselves, you’ll want to get them checked out further. A bulls-eye rash is a good sign that Lyme is present. Other symptoms include a high fever, fatigue, flu-like symptoms, headaches and muscle pain. Not exactly helpful, is it? Those symptoms can mean a myriad of other things, too, which is why Lyme disease is often referred to as the ‘great imitator’, because it mimics so many other conditions, making diagnosis and successful treatment difficult.
You are your best advocate
My friend’s son was also bitten by a tick this summer. Her doctor recommended she ‘just forget this happened and move on’. If your doctor gives you similar advice, I’ll tell you what I told her… walk away immediately and never go back. Tick bites should be taken very seriously and should never, ever be forgotten about, unless precautionary measures have been taken to ensure the health and safety of the person affected.
If our story can prevent one other family from going through what we do, my daughter’s fight has not been for naught. Know the symptoms. Know the treatment. Know when it’s a good time to seek a second opinion if needed.
Jamie Buss is a parenting columnist and mother of three. You can continue the conversation with her at Facebook.com/ROCparenting.
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