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.


6 comments:

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Lyme disease is scary stuff. Hope she's doing much better now!