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Feb 11, 2013

Say A1C in mixed company, and you're sure to get a few perplexed looks. Say it in a room full of type 1 diabetics and you might catch a few groans, a few questions, or possibly no acknowledgment at all. HbA1C, a lab test known as a hemoglobin A1C looks at average blood glucose over a span of time - typically about 3 months, though I'd personally have to say it's a weighted average, but I digress. Think of it this way, if a blood glucose check with a meter is a snapshot, then an A1C is like a panoramic photo.

The familiarity of this term in the DOC can elicit undertones of dread and resentment, or beams of pride - which is to say we often turn the quarterly A1C into a report card on just how well we're managing diabetes and blood glucose trends. That last is particularly true of us D mamas, even when we try like crazy to avoid doing so.

Miss N, my lovely, days shy of turning 13, full of life (but currently hates D with a passion) daughter just had one of those visits where we could have turned her amazing A1C into a brilliant report card - except we didn't want to. In fact, we both walked away feeling like that fault lies with her care team. And we weren't happy with or impressed by it.

You'd be hard pressed to find someone in the DOC who can't relate to or hasn't heard the phrase look at the patterns, not individual numbers. For us, it's become a mantra these last three or four months. That's how long we've been troubleshooting excessive morning, afternoon, evening, and nighttime highs. What's that you say? Oh, right - excessive highs all ding dang day long - interspersed by random inexplicable lows. Inexplicable because I am absolutely anal about avoiding stacking insulin with corrections.

Yes, I admit it. I fiddle - a lot. Every single week I sit down and look at her glucose patterns, her basal rates. I even created an excel file where I can overlay the two and quickly identify areas where we need to raise or lower basal rates, tweak insulin to carb ratios, and wonder if her ISF is accurate. We're still just shy of two years into this journey, and it's all too easy of late to get frustrated and feel like giving up. Except I can't - because she's my daughter, this is her life, her health and livelihood - if I'm going to get frustrated and give up just two years in, what does that say to Her? What kind of example does that provide? Not a good one, that's for sure, and in the end - I don't have diabetes, my kid does. Simply put, parents DO NOT give up on their kids. Not ever. If she can rock this diabetes thing (and she does), then I can manage the number crunching regardless of the inanity of it all.

For the first time in a long while, we approached her quarterly endo appointment with a mixture of dread and desperate hope. According to the various software programs we use, her predicted A1C this time around kept coming up around 7.9 - one program put it at 8.2, a rather huge jump for Miss N, but not outside the realm of possible or even expected. In the last three months she's experienced her highest highs (500+) and lowest lows ever (39, technically not her lowest, but the 24 was entirely my fault one week into this mess. We won't go there.) Miss N can rock the square and dual bolus, knows how various foods and exercise effect her body and glucose level, but the last 90 days would have tried even the patron saint of patience. So we looked to the center and her care team for answers. As we left for our nearly two hour trek, I sensed we both saw this visit as our last salvation from a never ending nightmare.

How wrong we both were. Miss N's A1C in question. An inexplicable, unwarranted, and truly mind boggling 6.4

WTF?!

Despite the fact that our visit lasted more than two hours, despite the patterns reflected in graphs, the logs, and our desperate plea for help, all we heard - over and over again, was what an incredible job she (and I) are doing in managing her diabetes. Huh?

That A1C makes no sense alongside three months of logs, graphs, and various printouts. I suppose we could have just soaked up all the praise, gone along with everyone treating that stunning (I mean mind blowingly inaccurate) A1C as some sure sign of success. At some point the PA realized we weren't on board with all the celebration surrounding this single, simple number. 6.4 - what does that even mean? How is it possible? Do you not see the never ending string of 300+ values on the two week record sitting in front of you? So the celebration turned to chastisement.

You really need to stop perseverating on a single number. You need to look at the patterns, not the numbers. We're not going to change anything, that A1C is just too good. Ah, hello? Did you not just say - a hundred times over - to look at patterns rather than a single value or number?
That's all 6.4 is - a single number. It could be a lab error, a mix up (there are a handful of other kids being seen simultaneously); heck, it could be accurate, but then please explain to us how that is possible in light of the patterns we've set before you.

By the time we got home, Miss N was in tears. The help we so desperately craved - relied on, expected. It didn't exist.

The message they sent us out the door with appears to be the message our care team need head more than us. It's just a freaking number, and by itself it is meaningless. My child is not a single number - she isn't even just a diabetic. She's a (nearly) teenage girl struggling with feeling miserable, and desperate to achieve glucose trends that don't leave her feeling lethargic, nauseous and unable to see due to blurry vision and headaches. Anything greater than 170, and that's how she feels. It's wretched, and my heart breaks to watch her Herculean effort to contend with that, stay up on homework, and give 110% to volleyball.

At her request, I'm looking for a new endo center - but even that is a bittersweet task. She's seen by an endocrine doc at what is supposed to be the Golden Standard for pediatric diabetes care. I know it's usually us parents of CWDs that need the reminder, but today I'm shouting it from the rooftop and hoping like mad that every endocrine doc can hear it. An A1C is not a report card. It's a single, simple number. It fits into a context, and is but a small part of a much larger picture. Even more than that, it does not and never should define my daughter or her worth.

Imported from external blog


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Posted: Monday February 11, 2013, 10:21 am
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Kirsten N.
female , single, 3 children
Louisville, AA, USA
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