Goals

A week or so ago I participated in an online diabetes survey in which one of the questions was, 'do you have an A1C goal?  If so, please provide a number below.' The question made me pause for a moment, but my answer was 'no.'

The real answer was only sort-of no. Our A1C goal is not quantifiable.  It's to do our very best at managing this unmanageable disease.  It's to get the lowest number we're capable of getting every three or four months.

One would think that not having a numerical goal would lead to less glee or disappointment when the all-important number is unveiled at every appointment.  But the truth is that I always have a guess, optimistic or pessimistic depending on my sense of how the past couple of months have gone.  Sometimes my guess is high and I'm pleasantly surprised. Sometimes I come away feeling unpleasantly discouraged.  Sometimes I'm so close to the actual number I consider a side trip to the race track on the way home.  But no matter what the result, I can't say this test plays a huge part in our daily diabetes decision making.

Do I think about the A1C as the months go by?  Sometimes.  When we're having a few days of high numbers, I file the week in my memory to explain a higher A1C.  A few days in range will give me hope it won't be so high after all.

But it's more of an afterthought.  My goal for my daughter is not a good A1C.  It's for her to feel well every day.  We strive to avoid the kinds of major highs and major lows which would impact her functioning and fun on a daily basis.  We strive to keep her pump humming and her blood sugar monitored with the understanding that this steady flow of insulin and awareness lessens the likelihood of complications down the road.  Then we work to incorporate these arduous tasks into a full, happy life at school, activities, home and wherever else the road may lead her.

These more immediate goals should, and usually do, lead to an acceptable A1C.  But that's not our goal.

Best Advice

In the past 11 + years of diabetes, we've been given all sorts of advice about my daughter's health and care. Advice has come at all stages, from all sorts of people. At this week's endocrinology appointment, I was reminded of a piece of advice which falls at the top of my list of favorites.

Looking like perhaps he'd just been through a challenging appointment or two, the endocrinologist sat down at his desk, glanced at the dexcom printout and the A1C slip and said, "Ahhh...this should be easy."

"It should?"

"This A1C is very nice.  And these graphs look pretty good too."  He shared the A1C and discussed it with my daughter.  Then he asked us, "Do you know how you did this?"

"Um...not really.  If I did, I think I could make a fortune," I replied as my daughter merely shook her head.

"Well I do.  Look at this printout here.  This part of the graph is the overnights."

Ah, yes.  The advice we received years ago from our first (and favorite) diabetes educator:

If you can stay in range overnight and wake up near your target number, everything else will fall in place.

Being in range overnight takes care of 10 hours of the day right off the bat. Then, if she wakes up at 100-ish instead of 180-ish, the breakfast spike is less significant and the lunch number is better too.  All those other spikes from the miscalculation of carbs or the crummy site become blips on the screen rather than compounding factors for an already high average.

If, the uninitiated or the overachiever might ask, this overnight thing is the key to success, why don't we just keep her numbers in range overnight all the time?  I wish we could, but as the old pro and the realist know, stuff happens.  In this case, growing happens and hormones happen.  Every so often things slowly get out of whack, particularly in a growing kid.  The 5 a.m.creep up begins.  Or the 2 a.m. correction comes into play.  The evening carb ratio no longer quite does the trick.  Sometimes, all of these things seem to happen at once.

At our winter endo appointment, my daughter's A1C was 3/4 of a point higher than it was last week.  We spent a good part of that appointment addressing high numbers at 10, 2, and 6 a.m. It felt like the whole night had gone haywire all at once and like untangling those numbers would be like untangling the Christmas lights: a task best left to somebody else. We gladly accepted the help.

As winter turned to spring, we continued to tweak basal rates and the evening carb ratio. Problems crept up one at a time and we apparently managed to keep things under control. Can we keep it up all summer?  I don't know.  I do know that I should pay close attention and call in professional reinforcements if I need to, because:

If she can stay in range overnight and wake up near her target number, everything else does, indeed, fall into place.

A Teaching Moment

We visited the endocrinologist this week.  As he glanced at my daughter's A1C slip, he was pleased with what he saw.  "This is what I'd call a good A1C."  Then, turning to my daughter, "Do you know what kind of number a good A1C would be?"

"Ummmm..."

The omnipresent chart was on the shelf to her left.  She looked it over.  "6?"

"Six would be very impressive.  Five would be amazing.  But in people with diabetes, particularly kids, five would be almost impossible without some really nasty lows.  What we aim for in kids your age is an A1C around seven, and you've done that very well."

There was much to appreciate about this little exchange.  The teaching. The relationship building.  The gentle passing of the torch of responsibility for understanding the disease to my daughter.  The affirmation of our hard work which, I know from experience, would have happened no matter what number showed up on that A1C slip.

We don't go to the closest pediatric endocrinologist.  Our visits require a sometimes hairy, sometimes traffic-ridden journey.  When we arrive, we look like we're planning to camp out for the duration, with snacks, homework and books in addition to the usual diabetes baggage and the materials we need for the appointment.  Despite these hassles, we never think twice about repeating this expedition.

I hear horror stories all the time about people's relationships with their doctors.  I realize we're fortunate to live in a part of the country with lots of choices, and that we're fortunate to have insurance which allows us to make them.  Some people have neither.  But if you do, and you're not happy, find a great doctor.  It's so very worth it.

Big Numbers

I'm afraid of big numbers.

Like any person who manages or helps to manage diabetes, I'm afraid of big blood sugar numbers and big A1C numbers.  Every day is a battle to keep those under an acceptable threshold.  Yet those aren't the numbers to which I refer.

What I'm really afraid of are big carbohydrate numbers and big insulin bolus numbers.

My guess is that it all stems from having a child who was diagnosed as a baby.  She was 13 months old.  We diluted her insulin because we couldn't possibly measure the tiny amounts she needed with an ordinary syringe.  Her total daily dose was about 4 units.

She didn't eat much.  Breakfast was probably the biggest meal, carb-wise, coming in at a whopping 22 carbs.  She'd have a quarter cup of cheerios(8), half a small pear or half a jar of baby food fruit (8) and half a cup of milk (6).  Snacks were 8 grams, maybe 4 crackers or 25 goldfish.

To this day it gives me great pause to bolus for more than about 25 carbs. 

I vaguely remember mentioning this to a diabetes educator once, who kindly referred to it as a 'healthy fear of insulin.'  It's not all bad.  I'm not prone to over-bolusing and causing severe lows.

What I am prone to is under-bolusing.  The rational part of me weighs/measures/eyeballs the food and thinks '80 carbs.'  Then there's a little voice which says, 'but she never eats 80 carbs.'  Or 'how could that one dessert be 80 carbs?'

More and more often, I'm able to close my eyes, hold my breath, and deliver whatever crazy amount of insulin is called for.  An hour or two later, I'm glad I did.  Yet I never do it without trepidation. 

Needs More Insulin

We visited the endocrinologist this week. 

In the weeks leading up to a visit, I am usually motivated to keep a more detailed log and to scan through the meter's averages and graphs.  I try to identify any major issues we need to discuss.   Sometimes I am able to fix a few things or at least narrow down the issues to a few really tricky ones.  I do this so that we can spend our endocrinologist time on issues I really need help with.

This time I tried to think about it.  I really tried to weed through all of those numbers and find the places we needed to change things.  I didn't know where to begin.  I gave up.  It turns out my confusion was warranted. The doctor's initial impression?

"She needs more insulin...like most of the day."

Her A1C was up, only by .3, but after going down a couple of times in a row it wasn't great news.  It wasn't surprising either.

Many things had changed since winter.  She'd added height.  She'd added weight. Yet she was missing a sufficient quantity of a key ingredient.

So we added insulin to almost every basal rate.  We added insulin to almost every carb ratio.  We added insulin to the correction factor.

We've been doing diabetes for ten and a half years.  I'm able to tweak a basal rate here and there, or recognize when the correction factor is no longer correcting.   I'm a person who, given sufficient knowledge, tries to solve problems on my own before asking for help.

Yet once in a while, particularly with a growing child, the time comes for a major overhaul. In many ways, it was freeing to hand that whole pile of 'undesirable' numbers over to the endo and say, 'please fix this.'   Now we'll watch and see if he did, and hope he at least got close enough that I can trouble-shoot the rest from there.

REALLY?

My mouth hung open and all I could seem to utter was, "REALLY?" when the doctor shared my daughter's A1C yesterday.

It was a good 'really.'

It was an absolute surprise.

There was no correlation with the 90 day average on the glucometer.

There was even less correlation with my sense of how things had been going.

With the numbers in front of us, it became a little clearer.

"See here?  The middle of the night numbers are good, and wake-up is good.  She's coming down well after breakfast too.  That shows us that she's spending a great deal of the day in range."

Unfortunately that 'great deal of the day' is not the time I actually spend with her.  From mid-afternoon through the evening, we're battling one 280 after the other, and we're testing constantly.  To me it feels as though she's constantly over 200. Every attempt to reverse course has hit a dead end.

We left the appointment with some new strategies to get the latter part of the day under control too. We have hope that high blood sugars will soon stop haunting our afternoons.

It's easy to beat ourselves up over bumps in the road which is diabetes.  If you're like me, it's then easy to turn these bumps into maddening, anxiety-producing mountains.

The silver lining is that yesterday, I had a very pleasant surprise.

Good Control

The question stumps me every time.  "Are her blood sugars in good control?"

It's asked by medical professionals in every office we visit: the dentist, orthodontist, eye doctor, pediatrician, specialist, lab.  No matter how it's asked, my mouth seems to open and close but I'm unable to form an adequate sentence."Is her diabetes under control?"  "Have her blood sugars been stable?" 

The first problem is how vague the question is.  What do you mean by 'good control'?  Are you asking about today?  This month?  Since you saw her a year ago?  Today, her blood sugar may be terrific, but it could be the first day in two weeks she's stayed below 200.  Is it her A1C you're looking for?  That may not reflect the past 2 months' work to bring it down by next time. 

It also strikes me as curious that a medical professional who should have some rudimentary knowledge of the disease phrases the question this way. By definition, her blood sugar is out of control.  We use many tools to control it as best we can, but she will get smacked by random highs and lows no matter what we do.  These are caused by factors like growth, illness, unanticipated exercise, stress and possibly a full moon.  These factors are out of our control, part and parcel of life with diabetes. 

Which leads to the ultimate problem with the question. No matter how it's asked, it's phrased so that 'yes' and 'no' are the only possible answers.  Yet neither is accurate.

Usually, I cobble together a response such as, 'pretty good...we do the best we can," or "most days."  I imagine neither of those is terribly helpful. 

The reason for the question is generally clear.  Doctors, nurses, and technicians need to find out if she's at risk for any complications they should be on the look-out for. 

Perhaps those of us who encounter this question could begin to use it as a conversation starter.  Instead of mumbling through a useless answer, we could formulate responses which could make doctors rethink the question.

"Are you looking for her A1C?  That was x.x last time, down from x.y the time before."  Or, "Do you mean the last couple of weeks?  She's been having random lows we can't account for...that's part of what brought us here." Or, with a tired smile, "Could you be more specific?  It's a big disease and it's hard to quantify how we're managing it with a yes or no question."