Friday, July 15, 2011

It's The Not Knowing That's So Hard...

No, I didn't think much of the one tick we found on Sweetie toward the end of May. Hubby and I reasoned that it couldn't have been on her that long (much less than 24 hours, we figured) so, really, this was nothing to think twice about.

No, I cannot honestly tell you that she was never bitten by another tick within the last few months. With her taking care of her own dressing and undressing, plus just not considering "possible tick bite, possible tick bite, possible tick bite..." every single day - no. I just haven't been consistently checking for the little buggers.

No, I didn't consider that Sweetie's initial weekend of feeling yucky was anything more than a mild passing virus. Kids get them all the time! This too shall pass...

No, I wasn't overly concerned, at first, with her occasional mention of having headaches. They weren't everyday. They certainly weren't disabling. She had no ongoing fever or malaise from the initial "sick" weekend. Nothing more than the random, light headaches, off and on. If anything, I was worried that maybe her eyesight wasn't so great and she would be needing glasses.

And what's more...

I definitely didn't consider that these headaches - or the initial supposed "virus" - could in any way be a symptom of Lyme Disease. Because, no, I did not know there were tell-tale Lyme Disease symptoms other than the usually-seen bull's eye rash - which she never had. No, I also don't know the symptoms to watch for for many, if not most other illnesses in the world. Do you?

No, I didn't realize how little is actually known about Lyme Disease and that it could be said that typical doctors only treat patients based on industry standards... and yet, time and again, there are patients presenting themselves as now having chronic Lyme Disease even though they were treated - as the standards prescribe - shortly after being bitten.

So, no, I didn't understand that I should fight for Sweetie to be on her antibiotics for longer than the doctor initially prescribed.

And now that I successfully fought that battle and she's on her meds for twice as long as originally intended... no, I don't know that this is completely necessary, or that the initial 3 week treatment wouldn't have been enough to take care of the infection, as the prescribing doctor insists it would have been.

And, no, I don't know for sure that 6 weeks total of the antibiotics will even truly be enough!

I don't even know if a blood test taken once the antibiotics are complete will accurately give us the proof that, in fact, the infection is gone. For all I know, we could get a false negative from that blood draw.

With this extended course of antibiotics... no, I didn't consider right away what that much regular antibiotics could do to one's system.

No, I didn't think about how adding probiotics to her diet like those found in yogurt, kefir and even straight up probiotics would be a great thing to do for helping her deal with so much antibiotics.

No, I never heard of the GAPS Diet before, nor - obviously - realize that it really would be the best diet for her to adopt throughout this process.

No, I am not necessarily convinced that she needs to be on the GAPS Diet per se, but do strongly feel that we/she should at least be restricted to a more macrobiotic diet at this time.

No, I'm also not terribly concerned if she sneaks some against-GAPS foods into her day. One piece of pizza isn't going to kill her. One small chocolate treat is just fine. Maybe we'll even go out for ice cream during our vacation. It's fine.

And anyway - so far, so good for how she's feeling! Yes, it's only been 2 weeks at this point, but Sweetie has not yet shown any signs of feeling bad in the belly in conjunction with the antibiotics. What's more, she is well aware of why we're altering her diet as we are and that she needs to tell us how she's feeling as time goes on. We can and will alter more drastically if she indicates that it's needed.

(I do know Sweetie to be a generally pretty healthy kid, fast-healer, and a healthy eater who likes a wide variety of good foods, only occasionally wishing for less-healthy treats. I have faith that I know my child well enough in this way to trust she'll be just fine with minimal changes to her ongoing life.)

With that said... going beyond the timeframe of her antibiotics treatment? No, I'm not thinking we will keep up with this altered diet much longer than that. Maybe a week or two. A month longer, tops. But as advised by the GAPS Diet itself, I'm thinking their prescribed up to 2 years or so of eating this way to truly restore the gut flora is just not necessary.

But then again, if she is showing signs that eating her "regular" way is just not working for her when we switch back then, of course! We will do everything we can to keep her as comfortable and healthy as possible.

And last but not least... no, I do not like the term "Lyme Disease." A disease, to me, sounds like an awful, long term if not permanent condition. Something that you cannot be rid of. And, yes, I know. For some people, that's exactly what it is. Chronic Lyme Disease affects their life every day in all sorts of ways and will for the rest of their lives.

But... I do have every intention and great faith that my typically healthy Sweet girl will battle this blip in her road with all she's got and that she will be 100% Lyme free before the summer's done.

We are doing what we believe is right and good for her to set her on this very path. No more, no less. Not at this point, anyway. And we will adjust as she indicates she needs us to do, if she needs us to.

Yes, in every way and at every moment I feel what I know to be an irrational "Mommy guilt" about what Sweetie's living with right now. Medicine everyday. Changed diet. Friends and family asking her how she's feeling, sharing their own experiences with tick bites and Lyme. It's, of course, left in my culpable hands that I didn't find the culprit tick on her. It's my fault that I didn't recognize signs and get her to the doctor any sooner than I did. I feel constantly, incontrollably on the defensive about how I've "allowed" - am allowing - this to all play out. And God forbid she's ever bitten again! Our family is outside all the time hiking and playing. I feel compelled to check her for ticks at every moment... then guilty as hell if I realize after she's gone to bed that, no, I didn't actually look her over today! What kind of mother am I?!

But... she is feeling much better. She really seems back to her regular self. I do have her on a course of medicine I have to believe will be more than enough to fight this Disease. I'm changing her diet as she needs to best get her through these several weeks of antibiotics and I'm more than willing to change it even more drastically if she shows signs of needing it. I intend for her diet to return to normal shortly thereafter, but am certainly most looking out for her day-to-day comfort and health, again willing to keep her on a restricted diet for as long as she indicates it's needed.

I may not have been able to stop her from getting Lyme Disease. And I may not be able to stop a tick from ever biting her again. But I can rest easy enough, knowing Hubby and I are both on the same waive-length, doing everything we can to make sure this remains for her an acute case only.

And that's the best I can do, I know.

Saturday, July 02, 2011

Too Much Excitement!

Hello! And welcome to July! While most kids in this area have literally just gotten out of school for the summer about a week ago, Sweetie is about to embark on her 4th week of blissful summertime fun.

Hah! Blissful?! I can't possibly be serious. In fact, a complete redo seems perfectly in order.

Starting with the final death of our 11 year old Saturn Station Wagon the Tuesday after Father's Day, this summer vacation, so far, has been pretty dang.... mmmm.... exciting! Yeah, that's the word!

But not in a good way.

After the car died, we spent that Friday shopping for a new (used) car. And, yeah, I have to admit that is pretty exciting. Got ourselves a sweet, red hybrid only a few years old. Air conditioning! GREAT mileage! Cute! We are very pleased with our purchase (and our ability, finally, to financially make the purchase and manage the monthly car payments.)

Oh! Wait! Did I say the "excitement" started with the car's death? That's not entirely true. It actually started just 2 days after Sweetie's last day of school when I arrived at my parents' house after work ready to pick up and take Sweetie home. But...

She was sleeping. Hmmmm. That's odd. And when she woke up, she was burning hot. Uh oh. And so began a weekend of fevers, tiredness and headaches. We still participated in our 1st of 4 Great Park Pursuits adventures, since she perked right up to her typical self with a dose of Tylenol in her. And then, by Monday, she was pretty much back to her usual self. A short lived, minor virus. S'all good.

Except.... every once in awhile she'd still complain of a headache. This, from a girl who never complains. A girl who can be 3 days into a pretty significant cold before she finally admits to me, "Mom, I think I'm sick." Yes. Yes, you are.

These headaches weren't everyday. And they weren't even that bad. Sometimes, if we were away from home, we'd just let her sip on some Coke - telling her the caffeine might help relieve the pain. Sometimes we could let time pass without doing anything and she managed well enough without further complaint. But then the headaches seemed to increase in frequency. And intensity. I'd give her Advil, because I didn't happen to have anything but children's cold medicine in the house. She learned how to swallow a pill, and noted the tasty sweet coating on the Advil.

With time, Hubby and I even started to consider that these headaches may be "convenience headaches," so that she could get to have a bit of soda or that sweet tasting Advil.

And like I said, they weren't yet all that bad seeming.

But they were frequent. Several times a week.

Finally, this past Tuesday, when she complained of yet another headache, I decided to call the doctor. After I left my message for the nurse to call me back, then... then Sweetie began to sob. So much terrible pain! The worst headache yet, by far. Yep, this had all the signs of a migraine.

And then, she vomited. Twice.

Long story short, the nurse called back and scheduled us to come in. Just a few hours later we found ourselves in the doctor's office and then waiting in the lab for blood work and X-Rays.

An X-Ray to check her sinuses, blood work to test for Lyme Disease.

Oh! Did I forget to mention? We found a tick on her about a month ago. It detached from her pretty easily, though, so we assumed it hadn't been on her all that long and, therefore, that no harm had time to be done.

Well, you know what they say about assuming...

Yep. Yesterday morning I finally got the call with the blood work results. Results I already knew on my own, given all the Lyme Disease research I've done over the last few days.

Early stages Lyme Disease. Looks a lot like the flu virus, with headaches, fever and malaise. Huh. Well how about that. Hindsight really is 20/20.

So. Three weeks of antibiotics. She'll be fine. Thank goodness we caught this early! And thank goodness my "mommy instincts" kicked into gear and I called the doctor. I didn't consult my retired pediatric nurse of a mom first. I didn't talk to Hubby about my decision. I just called. And I'm so thankful and proud of myself that I did.

For now, though, she's still suffering. Seemingly worse and worse everyday. More intense headaches. More likely to be "shaky sick" and/or have vomiting. Harder to cut through the pain with whatever meds I have to give her (children's Tylenol or Advil.) Longer lasting bouts of ill-feeling. And the pain always hits her pretty fast. One minute = happy, funny, "regular" Sweetie, the next = wincing, pained Sweetie. Today in particular has been pretty bad. A day that started out well enough, after a day yesterday of feeling good (after a couple morning hours of yuck.) But today's headache hit around 9 a.m. and she's still lounging on the sofa and visually in pain at 4 p.m. From the grimace on her face whenever she decides to get up, to the shadowed eyes that have become a pretty regular look for our Sweet girl, I can see how much she's just not herself.

I'm really, really hoping the antibiotics kick in very soon to help her feel better!

So, yeah. That's been our summer so far. And I didn't even tell you about the small windshield crack (that grew exponentially by the day until it was finally fixed) in our newly-purchased car, nor how I lost my debit card (albeit for only an hour or so - I had it all along!), nor how our other even-older-than-the-Saturn car we still have has tires of very, very questionable condition (and other parts too, of course.) Suffice it to say we've been forced to rely heavily on my parents to cart me around in their car while our cars have been MIA and/or been fixed.

But! The Great Park Pursuits have been fun so far! I hiked The Flume Gorge - a whole 2 mile loop! - with Hubby and Sweetie last weekend! Very Great indeed!

So at least there's that.

Anyway - we here at Chez Sweetie & Me are thanking our lucky stars that we finally have an answer to Sweetie's mystery illness of the last few weeks. And so very, very grateful that the infection was caught early and she'll be on the mend soon.

Here's to the end of all this excitement, and a hope for a nice, peaceful rest of our summer vacation. May your summer be fun and as eventful - in a good way - as you wish it to be!

Oh. And Sweetie, I'm sure, would love for me to tell you that - if you asked how she was, she'd still tell you "I'm great." :)

Well, of course she is.