Sugar Surfing

It's a bit like flying to me, or maybe riding a roller coaster. The difference is that every once in awhile, someone switches the track without telling you.  Your body is leaning the left but you go right.  Sometimes, the roller coaster stalls at the top of the hill, doesn't move and you just sit there, a little nervous for hours, wondering how the employees are going to get you down.  Sometimes, if you are paying close attention, maybe sitting near the front, you see it coming and can adjust.  On good days, you go up and down, moving with the train. Gliding.

A Continuous Glucose Monitor (CGM) helps us see those track changes coming.  We still have a few highs and lows, but less, and with more control.  Over the past few weeks, his BG averages a normal, non-T1D blood sugar.  We were already employing some of the methods described in Dr. Stephen Ponder's new book, "Sugar Surfing", describing using a CGM to attain better BG control but this book answered many of the questions I had and gave me more confidence to add insulin in to ward off a track change or worse, jumping off the track altogether.

Throwing away the fear is the most difficult part of parenting and treating a child with T1D. There is the certain knowledge that you are giving a drug that can seriously harm if not kill them.  I have been hearing people in the DOC (Diabetic Online Community), reading blogs like Arden's Day and SixUntilMe, and hearing the message, "Be Not Afraid". You hear many scary stories, many and it does happen.  More frequently, many T1D live long and productive lives and focusing there seems more psychologically healthy.

This book, while we wait for the ride to end with a cure, shows how to move from a static management of T1D to a more dynamic management.  I've heard of medical professionals say that such focus isn't healthy, that one has to "live one's life".  I don't think we look at our CGM any more than people today check their cell phones, probably less.  And, William is paying more attention, making more decisions, and becoming more confident in those decisions.  "I'm just surfing, Mom," he'll say.  The only caution I have is that at his adolescent age, his mind often loses focus and he forgets to check or correct.  That's where I come in.

BUY THIS BOOK!

Yesterday, I wrote that this book not only made me think differently about diabetes management, but also about how we grade and categorize starting early in childhood.  Because this post is getting long, and William is at BG 81 and great time for breakfast, I'm putting that thought off until tomorrow.

Note:  I know some insurance and Medicaid doesn't cover CGMs.  This needs to change.  They'll pay for those little blue pills but a device that keeps your child safe at night, reduces long term complications, no way.  Not medically necessary.  Makes me want to become a CGM lobby!

Making the Grade

"The measure of intelligence is the ability to change." - Albert Einstein

School taught me early on that grades were the pinnacle, the utmost important goal in that phase of my life.  Somewhere along my education, my self-esteem was woven tightly with my grade point average.  My intellect was judged with a letter.  Education was not just learning, it was a competition, it was proof that I had worked hard, and it was status.  In college, bell curves determined not what I learned or needed to, but how I compared to the others in my class.

It was a paradigm shift then for me when I began homeschooling the girls and was confronted with the requirement (in Kentucky) to keep grades:

The private and parochial schools shall record and maintain scholarship reports of each student's progress at the same interval as in the local public school, grading all subjects taught. (KRS 159.040)

A grade, by definition, is a ranking or sorting of the intensity, quality, etc. of the work - compared to others in the same study at the same time.  It quantifies how one is doing in relation to one's peers and serves as a way to communicate to parents and others involved in the child's welfare the progress of that child in relation to potential.  In a school, it serves a purpose.  When you are both teacher and parent, however, you know exactly the progress or lack thereof.  A grade begins to lose meaning when your goal is to instill instead a lifetime curiosity and love of learning and when it isn't needed to sort a group of students.

My new "grade" or report card is my son's A1C result.  I fight with myself to not see it this way, but I have read enough to know that many if not most parents of children with Type 1 Diabetes, and some doctors,  use that single number to judge how they are doing in the management of blood glucose. The A1C gives an approximation of the average blood glucose of the patient over the past three months.  If you don't have diabetes, it is likely your A1C is between 4 and 5.6%.  At 5.7%, you are considered at risk for diabetes.  The goal for someone my son's age is purported to be under 7%, and in adolescence, that can be a lofty goal.

As with homeschooling, time is shifting my perspective.  Each day, I know how my son is doing, as does he.  We have great days, we have shitty days.  We have pump failures, we have sensors that last two weeks instead of one.  We have nights of highs, lows, and perfect BG 85 all night.  We know how we are doing. Each mistake is an opportunity to learn.  Like algebra, our skill set increases which makes us faster and better problem solvers.  And, I don't care what our A1C is.

I know, overall, it has dropped.  How much?  Who cares?  What am I going to do with that single number?  Tell you that I've helped William manage better than that or this child? Tell you we've improved our management?  Interweave that number with our self-esteem?  Let you use it to judge us?  This is dangerous, I contend, because in life, there are ups and downs (literally, in our case) and circumstances within and out of our control will blow that A1C around like a toy boat on a lake.

Like homeschooling, diabetes management is really about lifestyle choices which take faith that long term, the results will be positive. So, why all this long winded dialogue comparing A1C with being graded?  I'm reading Dr. Stephen Ponder's book Sugar Surfing which I highly recommend and listening to some of his interviews.  He has made me think about this A1C business.  Tomorrow, I'm going to write about how I think a change should be made in supporting patients and caregivers of those with Type 1 Diabetes and a healthier way to communicate.

While you're waiting, go buy his book for your favorite person with T1D.  You (and they) won't be sorry.