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 Mystery Story

The phone rang.

'School' read out on the caller ID.

When I answered, I could immediately hear the fuzzy echo of speakerphone.

My daughter's voice: "I don't know what my blood sugar is."

She has 2 meters at school, one with her and one in the nurse's office.  There are 3 other kids with diabetes and the nurse has a back-up.  There's no way this information wasn't available.  "What do you mean?"

"I checked with the one in my bag in the classroom and I was 195 but I felt really high so I came down here anyway.  I washed my hands and the one in the nurse's office says I'm 348.  I checked again with the one in my bag and it said I was 297.  Then we tried the nurse's spare one and it said I was 140."

The nurse chimed in throughout the story and concluded with, "We really aren't sure what to do next."

There I was, on the other end of the phone, expected to solve this problem.

Ultimately we decided that I would come to school with her meter from home, the one we use all day every day. She was instructed to drink some water and went back to class for the time it took me to get there.

I remembered on the way out the door that I had a bottle of control solution. I threw it in my pocket with the trusted meter.

Our meters at school checked out with control solution. The nurse's was a different brand so we couldn't test that one.

My daughter was called down from the classroom.  She checked on 4 meters.

Home:  290

Personal Nurse's Office:  260

Purse:  266

Nurse's spare:  254

We corrected using 260 as a safe average and sent her back to class.  I left her home meter with her for the day with newly opened test strips.

Meanwhile, Strip Safely anybody?  We need to keep encouraging the FDA to tighten standards.  I can't figure how this was caused by anything but technology failure.

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."