A1c Countdown: It's Endo Time

Endo time...

Only 24 hours before the American Diabetes Association announced their new A1c guidelines for children 19 years old and under, Arden was in her Endocrinologist office for her quarterly appointment. We missed her previously scheduled appointment in April because of an illness. At that time the Doc told us, "Arden's A1cs have been good for the last year and a half... let's just get back together in June". 

Skipping a quarterly appointment made me feel strange but the three months seemed to fly by and before I could wonder what happened to the time, it was June and I was signing Arden out of school just like we have every three months for the past 8 years. It was Endo time. I found myself thinking about those numbers as I drove to the office.

"Diagnosed in August of 2006... first Endo appointment was in early September..."

Then I counted off the months. "October, November, December... December of 2006 was her second visit. Then four in 2007, 2008, 2009, 2010, 2011, 2012, 2013 - we just skipped April of 2014, so this is maybe, Arden's 32nd visit to her Endocrinologist. 

This thought made my heart heavy until I remembered my recent trip to the Dominican Republic, and I was quickly reminded that there is an entire planet full of people living with diabetes and most of them can only wish that they were able to visit a doctor. I adjusted my thinking and instead of the number 32 feeling like an albatross, it started to feel like a life preserver.

I walked into Arden's 32nd Endo appointment with a fresh set of eyes. Arden however, was not in the same mindset - she was preoccupied, unusually nervous and she seemed just a bit unsettled. When I asked her why she said, "I think I get a blood draw today... I really don't want to do that". A few minutes after we got into the waiting room a nurse called our name and we were off. These visits have their own pattern. Height, weight, blood pressure and other vitals happen in a room thats no bigger than a walk in closet, then we head down the hall for a hemoglobin A1c test and blood draw when necessary. The nurse started with Arden's A1c, loaded the sample into the machine and then ushered us to an exam room, "No orders for a blood draw in the computer", she said. Arden was relieved but confused, "I always get a blood test in the summer", she told me as the nurse left the exam room. Then she smiled as if she had gotten away with something big. About a month ago Arden experienced serious and sudden needle anxiety while at a dentist appointment, this was new for her, and I never imagined that it would translate to her Endo appointments because while she doesn't enjoy the blood draws, she has never resisted them or been afraid.

After the nurse left the exam room we chatted about softball for a minute (Arden's 9 year old All Star team had just won their tournament the day before) and then I snuck back to the phlebotomists room to get an early peek at her A1c result.

Arden's A1c has been steadily improving for the past two years but this was our first experience with skipping a quarterly appointment and I was irrationally concerned that would mean an increase from Arden's last result of 6.7. When I arrived in the room, it was empty and there was about one minute left in the process... just enough time to get my phone out of my pocket. 

Watch the ten second video before you read on - trust me.

My heart did a backflip when "6.2" appeared on the screen, a back flip. In July of 2009 Arden's A1c went from 8.5 to 8 when we switched from shots to the OmniPod insulin pump. In October of 2012 I blogged about the factors that I believed helped get us to her new best of 7.5. I remember just hoping for 7.4 in June of 2013 when Arden's A1c made a serious leap to 6.5. We stayed steady for some time around 6.7, and to be honest, staying steady felt like a bigger accomplishment than achieving a decrease. The decreases come as you make adjustments but who knows if they are anomalous... steady is, well, steady... it's balance, it's relief. I love steady!

That said, I'd be lying if I told you that 6.2 didn't make me wonder what a number that began with five would feel like... 

Oh, and we did need to get blood drawn on this day, but that's a whole other story...

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Arden does not experience significant or frequent lows. Achieving a desirable A1c under those conditions is not healthy nor an indication of health. Steady is much better than fluctuations that "trick" you into feeling good at A1c time. Please remember to read my discloser, it will remind you that I have no medical training and this site is not meant to replace your doctor because my words are not meant to be advice. Arden's Day is just a blog.

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NEW A1c guidelines from the American Diabetes Association

The American Diabetes Association just announced their new position on A1c targets, for children under the age of 19, who live with type I diabetes. What follows are snippets from the ADA story.

The Association now recommends that children under the age of 19 diagnosed with type 1 diabetes strive to maintain an A1C level lower than 7.5 percent. Previously, target blood glucose levels – as measured by the A1C, a test that reflects average blood glucose levels over several months – could be as high as 8.5 percent for children under 6 years of age, 8.0 percent for children 6-12 years of age and 7.5 for adolescents under the Association’s guidelines.  These targets were set because of concerns over complications caused by low blood glucose, or hypoglycemia.

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“The evidence shows that there is a greater risk of harm from prolonged hyperglycemia that would occur if children maintained an A1C of 8.5 percent over time. This is not to say we are no longer concerned about hypoglycemia, but we now have better tools to monitor for hypoglycemia,” said Jane Chiang, MD, Senior Vice President, Medical and Community Affairs, American Diabetes Association and one of the lead authors on the Association’s Position Statement. “The 7.5 percent target is evidence-based; however, we want to emphasize that blood glucose and A1C targets must be individualized to safely achieve the best outcomes.”

I want to urge you to click over to the ADA now and find out more about the changes and the reasons behind them.

Video of the announcement from 74th ADA Scientific Sessioons.

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We've been aggressive with Arden's BGs for the past two years and the results have been nothing but fantastic. Arden received her latest A1c test yesterday and I'll be posting a blog tomorrow about her result and how we've been able to achieved it. 

NPR: Father Devises A 'Bionic Pancreas' To Help Son With Diabetes

So many times I tell people, "You'd have to live with us for a few days to really understand type I diabetes". 

NPR posted a wonderful audio interview with Ed Damiano, the man who is working on the 'Bionic Pancreas' at Boston University. I've embedded Rob Stein's report here for you to listen to... after you're finished I encourage you to head over to NPR's site to read the entire interview.

Full story on NPR

Image by Ellen Webber for NPR

DexCom’s Forthcoming Mobile App Platform to Integrate Data from Insulet’s OmniPod System

Well, well... This sounds like a positive step!

From Market Watch...

SAN DIEGO, Jun 13, 2014 (BUSINESS WIRE) -- Insulet Corporation and DexCom, Inc. announced today their intention to enable DexCom’s mobile App platform, which is currently under development, to integrate data from Insulet’s OmniPod System. This will be the first version of a mobile App that is capable of incorporating glucose and other diabetes-related data from patients’ devices and displaying the integrated data via a smartphone App. This event also marks the start of DexCom's open architecture approach to diabetes-related data which will include an “approved by DexCom” indication to validate the authenticity of devices and Apps integrating DexCom CGM data.

“Providing OmniPod users and their healthcare providers with easier access to their management data is another key step in making diabetes a smaller part of life,” said Duane DeSisto, President and Chief Executive Officer of Insulet. “Through DexCom’s mobile App platform, OmniPod users will have greater access to the data that is so essential for understanding and improving diabetes management. We are proud to help people with diabetes gain greater and easier control over their disease and we remain dedicated to providing advancements that further this mission.”

“More than ever, we believe that effective diabetes management depends on timely and accurate data. That is why we are excited to complete development of the App and integrate data from Insulet’s OmniPod system,” said Terry Gregg, DexCom’s CEO.

Read the entire announcement here.

Living Between the (Diabetes) Lines

Three questions that every person living with diabetes asks themselves...

How high is too high? How low is too low? How do I find the balance between long-term complications and having a seizure. 

Each of us has been given a range to aspire to. When Arden was first diagnosed, the doctor told us that we should be trying to keep her blood glucose value between 110 and 200 - "let's try to keep her A1C under 8.5", they said.

And so that became my goal.

Then one day they told us that we should lower the high range value to 190, at our next visit we agreed to try 185. The low range number was never touched. I understood what was happening even though it was never articulated to me, our BG goals were adjusting based on the vibe that our Endo got from us at each visit. She was evaluating our ability to handle spikes, lows, meals and overnights. I was being lovingly manipulated.

Then one day we discovered CGM technology and that little screen gave me something that I never had before, a visual representation of our goal. Now there was a line that I was trying not to cross. In the past when our goal was 190, 210 didn't seem like a huge miss and on the low end... even though we were trying for 120, 100 seemed so perfect that we didn't mind being a little low; besides many people, who don't have diabetes, regularly have a BG of 85 - of course they don't have man-made insulin in their system that doesn't know when to stop removing sugar from their blood.

I was living between the lines but I think the lines were holding me back...

I say holding me back because Arden's BGs were, for the most part, existing between them. I'm not talking about unforeseen spikes or unexpected lows. Highs and lows happen, you correct and move on, but you don't let them impact your impression of the graph. A few blips don't discount the rest of the day. Look at how the BGs are when you are blousing correctly, counting carbs accurately, when your basal rate is properly set. In those hours I was content if the graph line was mostly stable and in between 180 and 120. 

It took me quite some time to figure this fact out, but the comfort that I felt when we achieved BGs that were between those lines, was holding me back from trying to do better. I had been lulled into a state of acceptance.

The lines were also providing a false sense of security. Even though they were arbitrarily set by a person that I only see four times a year, I was treating them like gospel. Finally I wondered, "if I can successfully keep a BG under 180 why could't I keep it under 170? Hell, why couldn't I shoot for 140?".

So I moved the line and do you know what happened?

I kept her BG under 160. Then I got brave and moved her low threshold to 100. Today, Arden's low alert sounds at 85 and her high is set at 160, but this summer I'm going to move that to 150.

All of this doesn't work if you punish yourself for going outside of the lines. I am telling you, do not do this if you can't handle seeing the graph climb above, or below those lines - don't add stress to your already stressful day. Before you attempt to move the lines you must find peace with being on the other side of them, you have to come to grips with the idea that nothing in life is controllable to that degree. Here's how I found my peace with that truth.

I was happy if Arden's BG was 180 all day because someone told me that number was okay. Her BG still spiked, it still got low but for most hours of each day her BG was 180. Today, most hours of the day come with a BG of around 140. She still has spikes and still gets low but most hours are spent in our new range. It took me a while, but now I can see, there is no difference in how I manage or what I do; the only thing that has changed is my expectations and the way that I react to them.

When I expected 180, I got 180. When I expect 140, I get 140. I'm learning to except 90... one day I'll learn to expect it. 

When you're ready, move those lines... the ones on your CGM or in your log book, and the ones in your mind and heart. Expect what you want, except what you achieve and never stop moving the lines that life sets. Define your own reality.

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Don't forget to read my disclaimer, I am not a medical professional and I am not dispensing advice... just telling stories on the Internets, the WWW, the information highway - you get what I'm saying. Please also don't forget that high and low ranges are never one-size-fits all. While Arden feels fine when her BG is 85, you or your child may not.