Does My Daughter Have Lyme Disease?

Tuesday, May 10, 2011



“It’s pretty indicative of Lyme Disease.”

Those are the words I heard this past Saturday that put me into a tailspin. Six days before, my daughter had come home from her grandparents with a tick on her shoulder. I pulled it off, cleaned it, didn’t think anything more about it. After all, I grew up on that farm and ticks were a yucky part of summer life. Dad used to light them with a match (like an idiot, I know).

And then a red rash started appearing around the bite. Still, I didn’t consider it serious because the tick wasn’t a deer tick, and I’d figured it was just a reaction. But by Saturday it was bigger and so my husband Googled (I could write a whole series of posts about the perils of medical Googling). The rash looks very much like the telltale “bulls-eye” rash that comes with Lyme Disease.

Impossible, I said. But I took her to urgent care anyway, where the doctor said the same thing. By then, I’d read all about the symptoms of Lyme and was in a near panic. Would my now healthy five-year-old have to suffer the rest of her life? I thought of all her potential and her bubbly personality, and my heart began to break. How much would this change her?

And was it my fault? Should I have brought her in immediately instead of waiting a week?

Naturally, getting a straight answer out of a doctor is impossible, since they have to worry about protecting themselves in this day and age. She did say that starting the treatment early enough was usually effective. But I couldn’t get her to tell me if a week was early enough. She kept talking in circles and pissing me off, considering we’d waited ninety minutes to see her. Finally, I flat-out asked if I’d waited too long, because she was making it sound like I had.

She became contrite and said no, she hadn’t meant that at all. She was referring to waiting until a blood test came back from the Mayo Clinic, which could take 5-7 days. Would be foolish to wait that long, she said.

Then why the hell couldn’t she say that the first time? I’m sitting there in near-tears, probably overreacting, and yet she’s got the compassion of a rock.

I realize doctors – especially urgent care docs – are overloaded and stressed, but guess what? So are the rest of us. I can’t imagine what it takes to deal with patients all day, but I do know that compassion and patience should be a course all medical professionals should take. Too many of them are in a constant hurry, making you feel like you’re wasting their precious time with every question you ask. They may be busy, but my medical premiums are paying their bills. The least they could do is act as though they give a damn.

Don’t get me wrong – I’ve met some great doctors. My OB is fantastic, as is my daughter’s regular doctor. But they seem to be the exception to the rule.

Back to the Lyme Disease. After an excruciating experience with a needle, Grace’s blood was taken, and we were told to take the antibiotics for two weeks and then a follow-up would be needed, even if the test came back negative.

I spent the weekend feeling guilty and worrying. Lyme Disease is carried in deer ticks, right? That was NOT a deer tick. Was a plain old wood tick. I’d bet my life on that. But then I found out that research now shows wood ticks (aka American Dog Tick) may carry a form of Lyme Disease. But is it really possible that out of the tiny percentage that carry the disease the one that bit my daughter had it?

And then there’s the time the tick was attached to the body. If it’s less than 36 hours, infection is unlikely. Mom says it has to be because she had a shower Saturday night, and I found the tick Sunday evening. But couldn’t Mom have missed the tick?

You can probably tell by now I’m a first-class worrier.

The pharmacist was much more reassuring than the doctor. He said the chances of her having Lyme were slim, no matter how suspect the rash was. And if she did, the antibiotic would take care of it. It’s only the people who get bit and don’t know and go untreated for a long time that have problems.

Of course, there’s always those freak cases, and that’s what I can’t stop worrying about.

Yesterday the doctor’s office called and said the initial test was negative; mind you, they hadn’t even TOLD me there would be an initial test. Still, she’s to remain on antibodies because the Mayo test could show something different.

I’m trying to remain positive, because realistically, the chances ARE slim. But every time I look at that awful rash and realize how much it looks like the bulls-eye rash, I get scared and the what-ifs take control.

What if something happens to my daughter? She is literally our miracle, and I’m not sure I could survive it. With all the joys of being a parent, things like this are definitely the lows. No matter what you do to protect them, there’s always something waiting in the wings to cause trouble.

How do we manage? How do we allow our kids to grow up safe without smothering them and making them a frightened mess? My husband says kids need freedom, and I agree. But there’s always that nagging voice that asks: what if something happens to her, and I wasn’t there?

How do you deal with the inevitable crises that come when you have children? What do you do to thwart the worrying and panic?

10 comments:

Raising Marshmallows said...

And that is the hardest part of being a parent. Knowing that we can't possibly protect them from everything. I hope the results come back in your daughters favor, hang in there!

Nikki

Stacy said...

Thanks. She's going in for a follow up with the Peds doc, and the nurse just told me they see this a lot and even if Lyme, antibodies will work. Still scary though!

Kaz Augustin said...

Oh Stacy, I feel for you. I have seven doctors in the family and they all have the compassion of pet rocks. Actually less, because at least you can pretend that the pet rock is saying something sympathetic to you, while the doctors just want to talk about patient throughput, how much tax they're paying (poor darlings) and when their Mercedes will be out of the shop. And do they hate being questioned! Morons. I call them all "body mechanics" now, which is a bit of an insult as I've known some excellent (car) mechanics. LOL

As for being a parent...yeah, I know what you mean. Thankfully, it's hubby who's the worrier, which at least gives me something to react against. But I worry too. There's no way to thwart it. Just take one day at a time. Fingers crossed over the Mayo results.

PS Our first child was born in the US and I remember getting into huge arguments with the otherwise nice Ob/Gyn. When I proved correct (hey, it's a gift), I was told I came out of anaesthetic, looked the doctor in the face, said, "I told you so" then went under again. It seems the entire surgical room cracked up and it went around the hospital. Premmie son was born okay and is now growing like a weed.

Melanie_McCullough said...

My heart is breaking for you right now. There's always the second guessing that comes with every decision we make. At the time, it seems like a good choice, but then something happens, and we wonder if we gave it enough thought. If we considered all the possibilities. But we all know that is nearly impossible to do.

And the thing is, kids need freedom. Scary as it is. We can't wrap them in a bubble and protect them from everything.

There's no cure for the worry. The only comfort I can cling to is that everything that happens, happens for a reason.

Keep us up to date. Let us know as soon as the Mayo test comes back negative. It will. You'll see.

Stacy said...

Kaz:
I can't imagine having seven doctors in the family. Not sure if that would be a blessing or a curse. Thanks for the advice - I really appreciate it. And your story with the OB made me LOL.

Melanie:
I know there is, and I'm the queen of second guessing. I've gotten better, but this deal has thrown me for a loop. Thanks for the update. I keep thinking there's no way it could be Lyme, but then I Google and see all sorts of pictures and stories that make me think it is. Then you hear that as long as she got meds she'll be fine. But then there are stories that argue that. So frustrating and scary.

I actually updated the post with a picture of the rash ... it's a bit more red than the pic shows, but you get the point.

Megan said...

Hi!

I just found your blog while frantically googling about Lyme disease after a tick scare with my two boys! I could have written a lot of what you wrote. I keep swinging back and forth from being reassured that they probably didn't get Lyme and if they did the antibiotics will do the trick. BUT oh my word the Lyme community on the internet is freaking me out!!

I thought I'd write to you to see where you are now with the whole thing. Is everyone healthy and happy? Are you still worrying every time she says she's tired or complains of an ache or pain like I am afraid I'm going to do? Kids must get bitted by ticks all the time. Why is this hitting me so hard?

All my best,
Worried mama Megan

Stacy said...

Megan
Yes, the community is a scary place. It's very unlikely Grace has it, but it still could be. Her test came back negative initially (but that could be false because was fairly early), and she did the round of antibiotics, so that's all we can do. She's been absolutely fine, and the rational side of me doesn't think she ever had it. It was a wood tick, not a deer tick. But still.

Yes, I worry about every ache or pain she has, or is tired. It's impossible not to. Just know that as long as you've done the antibiotics, you've done all you can, and more than likely your boys are fine. Keep me posted!

Stacy

Megan said...

Thank you Stacy! I'm so glad she's doing well. The silver lining is I found your very interesting blog because of it! We live in Hawaii where there is no Lyme to speak of but were vacationing in Northern California when I found the ticks. So it is a new threat to me and I know that is intensifying my fears. I'll check in from time to time. Megan

Stacy said...

You're welcome, Megan. What kind of ticks were they? I'm not sure if Lyme Disease has been found in No. California. Remember that it's very rare, and it's carried by only certain types of ticks. Did your kids get the rash?

Megan said...

Well I didn't know to save them at the time but from memory and descriptions on the internet, they could have been deer ticks. The internet (love it and hate it!) also tells me that N.CA has become a "hot spot" in the last decade or two. We were in Marin county just outside of San Francisco, staying in a suburban neighborhood up against a fairly wooded area and saw deer a couple of times. The moms I know in the area did not have a lot of experience with ticks, though a couple of them said they had found a tick on their kids in the past. The one I found on my 18 month old was engorged behind his ear (so had been there a while) but the one on my 7-year-old was flat and pretty small. I was feeling fine to just watch the site and for symptoms but then 3 weeks after I found the engorged one, my 18 month old had a low-grade fever for a day (but was acting normal). Took him to the doc here in Hawaii (we were home by then) and said better to do the antibiotics to be safe (also tested negative at that point). No rash. Ok so felt fine and moved on but three days later my husband comes down with flu symptoms (fever, sore muscles, headache, chills). He also says he had what he thought was an infected mosquito bite under his arm a couple weeks earlier on the trip. So I that's when I start my obsessive googling!!! And nearly send myself into adrenal fatigue from the stress. My husband took antibiotics too. But I am still torn about my 7 year old. He is fine, no symptoms, no rash. I think I'll wait 6-8 weeks from our return home and do a blood test.......but in the meantime I need to stop reading Lymenet and ILADS forums. I have to remember that their reality is not my reality.
Oh parenting can be so full of overwhelming worry. I know just what you mean about looking at your sweet child, so full of life and promise and being unable to stop yourself from imagining her with a chronic debilitating disease and how that would just ruin you......I've been feeling the same way.
So it could all be a coincidence and my husband had the flu and the baby had a mild illness (that is what I am hoping). Or we did get exposed to Lyme and hopefully took care of it!
Thanks for your responses. It is therapeutic to chat with someone in a similar position :)

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