Embracing Life & the Child with the Disease

The Number

Lots of things come along and become a part of your life when diabetes enters.  Insulin, carb counting, exercise (viewed much differently after dx), highs, lows, etc.  All having the common quality of UNPREDICTIBILITY.

But there is at least one constant for children dx’d with T1d — the quarterly endocrinologist appointment.  (I really don’t know if adults go this frequently or not.  ??)

With all the variables and possible complications and the 24/7 maintenance of the disease, this is just a way of keeping in touch with our diabetic team to learn about the disease and how it effects our child. Ryan’s height, weight, and vitals are taken every appointment.  And they review blood glucose logs to see where we are, to offer suggestions, answer questions, and hopefully give encouragement.   But the biggie about going is the _______ (you fill in your own adjective there) A1c test.

The American Diabetes Association gives this definition and explanation of the importance of an A1c and what it does:

  • The A1C test measures your average blood glucose control for the past 2 to 3 months.
  • It is determined by measuring the percentage of glycated hemoglobin, or HbA1c, in the blood.
  • Check your A1C twice year at a minimum, or more frequently when necessary.  (or quarterly, like we do)
  • It does not replace daily self-testing of blood glucose.

Checking your blood glucose at home with a meter tells you what your blood sugar level is at any one time, but suppose you want to know how you’re doing overall. The A1C test gives you a picture of your average blood glucose control for the past 2 to 3 months. The results give you a good idea of how well your diabetes treatment plan is working.

In some ways, the A1C test is like a baseball player’s season batting average, it tells you about a person’s overall success. Neither a single day’s blood test results nor a single game’s batting record gives the same big picture.

Here’s the Purpose of the A1c (still according to the ADA):

  • Confirm self-testing results or blood test results by the doctor.
  • Judge whether a treatment plan is working.
  • Show you how healthy choices can make a difference in diabetes control

Here’s a record of Ryan’s A1c’s since dx (bg averages are taken from Accu-check website):

Date                                         A1c          Av BG

December-09

> 14

400+

At Diagnosis
February-10

8.9

209

Two months in
May-10

6.8

148

Woo Hoo!!!
August-10

6.7

145

Still on track, baby!
November-10

8.6

200

U.G.H.  — Devastating
December-10

8.2

189

Lovin’ pumping
February-11

7.4

166

Ok, I’ll take it!
May-11

7.2

160

Improving
October-11

6.9

151

Perfect!!!
January-12

7.8

177

Oh, the holidays . . .
April-12

7.9

180

What the heck!!!

A brief explanation:

A non-diabetics goal is 6.0 or less (according to Joslin Diabetes center).  The American Diabetes Association recommends 7.0 or less for a diabetic.

A diabetic person experiences highs and lows.  The consistent highs over time, years of time, can cause the devastating complications we often hear about (blindness, heart, kidney & liver disease, amputations, nerve damage, coma, etc).  The lows on the other hand can cause more immediate scary and potentially life-threatening situation like passing out, seizures and worse.  So the constant battle for balance and target numbers (for Ryan between 80-150) is “twenty-four sevenly exhaustive”.   (How do you like that for poetic license?)

So as you can see, not one of those A1c’s, or three month sugar averages, have technically fallen inside his target goal.  Hm.

Endocrinologists are all different. They say and suggest and even scold for different things.  Some say that a child Ryan’s age (7 years) is good if he is in the 7s.  The endo we had in Dallas and the one here in Baltimore follow that same philosophy.  In my experience (and I feel like I’m treading on thin ice here, so I say again IN MY EXPERIENCE), once I get to the upper 6s, which Ryan has had three times in near two and a half years, the first question out of their mouth is, “Are you experiencing a lot of lows?”  Where an A1c in the 6s is great, they think that IF you are trading off with a lot of lows or “feeding insulin” all the time, then it’s maybe not as productive as it may appear.  While some encourage and even expect a child’s A1c to fall into the range of a non-diabetic adult and be and stay between 5.5-6.0 or even lower.  And some are actually able to get there in a healthy manner.

And where we are, with Ryan’s body and situation, we WORK and I mean W.O.R.K. to get into the 6s.

So what’s a momma to do?  Who should I listen to?  What should I strive for?  And more importantly, what is best for Ryan’s body?

I write this making no excuses for the relatively “higher” A1c numbers.  Do I wish we were between 6.0 – 6.5 every time – ABSOLUTELY.  And I have really had to work on not having some “A1c envy” at times.  Shoot, those who know me best know that the 8.6 in November 2010 sent me on a downward depression spiral, convinced that I was hurting Ryan.  But even the last one in April of 7.9 really messed me up for a few days.  I was sure there would be an improvement January’s 7.8 – and I was wrong.

But here’s a few things those wonderful d-moms and a specific T1 adult (yes, Pat, I’m talking about you) told me in the pit of my depression that I must constantly remind myself of every three months:

1 – I am actively participating in Ryan’s care.  I’m counting every carb and sometimes I mess up, miscount, over or underestimate.  I’m checking blood sugar levels an average of 8-9 times a day and making necessary adjustments.  I’m doing basal testing when necessary.  I’m checking at night, at 3am, all night if I need to when I need to, keeping his levels as closely monitored as possible without losing mine or Ryan’s insanity.  I’m doing a good job.  Let me tell myself again, I’m doing a good job.  And D-mom reading this . . . YOU.ARE.TOO!

2 – Just like my body is different from yours, it’s make-up is different.  For example:  my metabolism works at a different speed than yours (I’m willing to bet – slower), some things I eat hurt my stomach and don’t hurt yours (like pork and Papa John’s Pizza – I love that stuff but it KILLS me) and prescription tetracycline breaks me out in deadly hives while for someone else it can clear up acne and leave your skin clear and silky soft.  As my body differs from yours, Ryan’s body is different from other people with T1 diabetes.  He absorbs insulin at different rates, sometimes because of growth or health or seems to not absorb at all at times.  His diet is different.  His activity and schedule is different.  His ratios, his basals, the rate his body digests foods is different.  Ryan’s sugar does not elevate with ketchup, sf syrup or ranch salad dressing like others do, so we never count the carbs for any of those if eaten with other carb covered foods.  His regiment for diabetes is unique to Ryan and Ryan’s only because his body is unique -with or without diabetes.

3 – And because of numbers 1 & 2, I should not compare Ryan’s numbers to any other person with T1 and be hard on myself or think that I am hurting him.  I.SHOULD.NOT.COMPARE.

And D-mom reading this . . . NEITHER.SHOULD.YOU.

Let’s focus on being happy for that other child, that other adult.  Congratulate their number.  Celebrate with them.  Do that T1 “Happy Dance” in their honor.  We would want them to do it for us if the roles were reverse.  A true friend rejoices when you do.  So return the friendship.  Your day will come.

But if you walk out of the endo’s office a tenth of a point higher or three points higher — Don’t be jealous.  Don’t get depressed.  Don’t fear.

And remind me of this if we go in June and we’re still in the upper 7s!

Our children’s bodies are unique.  Some are more “brittle” than others.  Some have an easier time managing swings.  Some of us (not including myself here) just simply figure it out earlier or for a time or luck out with their experiementing with temp basals, extending the bolus or changing basals.  Maybe what’s good for one, isn’t good for another.  Maybe to get Ryan’s A1c to 6.5 or less would mean a lot of scary lows.  Lows that would cause seizures, passing out or keep him from being the happy, active, constantly moving boy that he is.  Maybe it wouldn’t.  Maybe it would be good for him.  Maybe he would settle into the lower averages just fine.  But living with diabetes is a process.  A trial and error process all too often, even an experiment sometimes.  A guessing game.  I try hard to make it an educated guess, but when that meal is placed in from of him at a restaurant and it’s not exactly what you thought it was but you aren’t about to tell that little boy “no” when his eyes light up because it looks so good – yea, I do guess and become extra diligent for the next few hours.

We need to take the advice we give our children.  “Be happy, knowing you did your best.”

So the next time you are getting ready for that endo appointment and you get that nervous-just-before-a-test feeling in your stomach again.  Remember, it’s just a number.  A number that tells us where we have been so we know what plan of action to take to get where we are going.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: