A1C: How We Got To 5.7
I've written blog posts for years about how we've reduced Arden's A1c. I've told you about the OmniPod insulin pump, DexCom continuous glucose monitor, modifying diet, being bold with insulin and more. The process has existed on many paths. We had to conquer school days, overnights, carb rich foods, sports and my fear of insulin. If you search the phrase "A1c" on this site a bevy of blog posts will return and they all highlight a moment of the journey. You'll see us get out of the 9's, the 8's the 7's and finally claw our way to sub 6.
Almost each time that we got the number to decrease I would spend the ride to Arden's endo appointment telling her not to be disappointed if her A1c goes up because I was always trying things and never really sure if they would work. Diabetes is the ultimate on the job training
Last weeks Endo visit was different...
When we got into my car I told Arden, "Your A1c is going to be 5.7, watch and see". I was confident, almost brash when I told her this. Sure I was cheating a little - truth be told - because I have the Dexcom Clarity app on my phone and can see Arden's A1c. But still my confidence was rooted more than just being able to see reports from her glucose monitor ahead of her quarterly blood test. This confidence was bigger than data because I finally know what I'm doing. No more guessing, no more wondering. Today I trust my gut and we attack Arden's blood sugars with a steely resolve. All of our experiences have finally added up and the seemingly senseless actions of diabetes are finally making sense.
The way I arrived at this resolve is why I'm writing today...
In the Spring of 2015 I launched a type 1 diabetes podcast called the Juicebox Podcast. My intention was to share my experiences being the parent of a child living with diabetes in a new medium and hopefully to a wider audience. That was it, no larger or grander plan. I was just starting a podcast. Since then the podcast has reached more people than I could have ever imagined and the response from listeners is largely very positive. Better still, I receive emails, FB messages and tags on Instagram nearly daily from people who want to tell me how the podcast has helped them - those notes are unimaginably wonderful to read. The idea that a persons A1c is lower and more stable, that their life feels calmer and easier to enjoy... that feeling is well beyond any initial hope that I had for this blog or the podcast. I can't lie and tell you that I didn't think the podcast would be helpful but I wasn't able to imagine to what extent or that it would actually also help me.
So how did we get to 5.7? The simple answer is by doing the podcast. It turns out that by taking the time to record the show, by having conversations with other people living with diabetes... I was allowing myself time to consider aspects of my management theories as well. Pausing life for a moment to think about type 1 and how to best approach it. I'm not a pre-planner at heart, I go and work things out as I'm moving. So some of the tactics that you have adopted through the Juicebox Podcast are things that occurred to me while recording the podcast. I took my experiences and spoke about them, during those conversations things came to me that previously had not. My ideas were growing and taking shape as I was sharing them with you. I learned from diabetes, you learned from me and I learned from you. A circle, a wonderful blue circle.
When I decided to stop being afraid of insulin, others followed. You had great success with that idea, I was enthused by your stories. That enthusiasm helped me to chase more fancy, find success and report it back to you. In return you contacted me and some of you come on the podcast to talk about your experiences - another blue circle. When I hear from you that the podcast is helping in your life, that knowledge supports me and we move forward together.
That is what community is...
I cried when one of you told me that your daughter has been playing for hours with a stable blood sugar. Your words, "she seems like herself again" striking me at my core. This exchange is one of the great moments of my life. All I want is for my daughter to have a chance to be herself and live her life. That a podcast was able to bring that dream to another person has made my heart soar.
There are many other stories and when each of them reaches me my desire to continue doubles. You all are the reason that Arden's A1c is 5.7, I have no doubt of that fact. I need to thank each of you and I want to invite you to come with me as I try to keep Arden's BGs stable, her A1c constant and try to make all of our lives better.
The Juicebox Podcast is one of the true surprises of my life. I just never imagined...
I understand that not everyone knows about podcasts or how to find them but it couldn't be simpler. iOS users on iPhone and iPad only need to click this link, you already have a podcast app. Android and Google Play folks can click here. You can also listen online at JuiceboxPodcast.com, on Stitcher, iHeart Radio or in your favorite podcast app. Start at the beginning and take the journey with me, you'll catch up to subscribers in no time. The podcast is 100% free, I offset my costs by accepting ads on the show. It will never cost you anything to listen to the JBP.
If the podcast has helped you please consider leaving a comment below so that others may find the support they need to try an episode. #A1cYaLater #BoldwithInsulin #DiabetesandFear #TellAFriend
A1c: Working 9 to 5
I remember the first time that I was able to make Arden's A1c decrease on purpose.
I don't remember what her level was or where it moved to but I remember making an adjustment to her regiment that worked as I anticipated and the moment that her Nurse Practitioner walked up to me to share the good news.
The decrease was minimal and Arden's A1c was still much higher (in the 9s) than where we hoped for it to be, but still I broke down and cried in the waiting area when the NP told me the news. I must have been quite the site because after a moment I felt the NP put her arms around me and she hugged me tightly without saying a word.
That moment in our lives occurred many years ago. On that day I believed that I was crying because Arden's A1c was lower, but today I think that the relief I was feeling stemmed from success – effort was finally turning into results. Moving that number however how slightly, was the result of hard work, hours of contemplation and months of trial and error. The tears that I shed had accumulated from all of the moments that I wanted to cry but didn't and it felt right to release them in celebration, I could sense that the tide was turning.
In the years that followed more adjustments were made. We added the OmniPod insulin pump, a decision that led to a large decrease in A1c. We also changed how we thought about many foods but the final piece of the puzzle was adding a Dexcom CGM which gave me the confidence to use insulin more boldly. We now had the tools that I felt I needed and the path to travel was clearly in front. We just needed to learn how to walk. Each step was a learning process that led to incremental improvements for Arden but we were finally moving forward with purpose and that seemed like a huge leap.
I love to tell these stories because even though it doesn't feel like it today, you won't be reading this blog for much longer, at least not for the same reasons as when you began. Arden's Day readers are mostly made up of the parents of newly or newer diagnosed children and folks who are still finding their way with type 1 diabetes. One day, much sooner than you think, you will have the accumulated knowledge, courage, and hope that you will need to make Arden's stories your own. Then you can get back to using the Internet for good stuff like reposting photoshopped pictures of Kim Kardashian's shiny ass, taunting your friends on Facebook when their sports teams lose and 'liking' pictures on Instagram.
Here in present time... it was Endo day. I tried to give Arden my obligatory speech about A1c levels and ready her for an unexpected increase that will likely happen at some point. I want to prepare her because we have been on some kind of a crazy run over the past two years and my hope is to limit her disappointment, should things go the other way. Arden stopped me before I could finish and said, "I know, I know, you tell me every time - I won't be disappointed if it goes up". Seems that my sly parenting skills aren't so sly anymore...
When we arrived the nurse recorded Arden's weight, height and BP and then we made our way to the little room where the blood stuff happens. The A1c machine began it's test as we were being ushered into an exam room. Not long after we sat down, the NP brought Arden's A1c results to us. When she spoke the number out loud there were no tears of joy, no relief, no sense that we had been working hard for what was achieved and deserved this. Arden's A1c had reached a new level, one that I certainly didn't expect we would arrive at for maybe another year. Hearing the number only caused me to feel calm. "I knew this was going to happen if we just kept at it", I thought to myself.
I put my hand on Arden's back and congratulated her and then texted my wife Kelly with only this image, her response was...
"Shut up!!"
This post is for everyone who is at the point where 5.9 feels unobtainable. I am here to promise you that it is within your reach. Each of you can do this with time and patience. It hasn't been easy. We've added technology, switched insulin, adjusted diets, sacrificed sleep and persevered countless setbacks, some of which I thought could break my spirit. Yet here we are at 5.9.
I don't know how long we can hang on to this number. Maybe this is our new normal, maybe it's a fleeting moment and puberty will come and knock us into oblivion, who knows. None of that matters because I know and believe that we can find our way back here again; this time with purpose.
Sudden Needle Anxiety
Please, don't turn to me when my daughter looks scared of a needle and say, "Huh, I would think that because of all of the times she gets stuck, this wouldn't be a big deal"
"What is that"?
Those words surprised the hell out of me when Arden spoke them almost one year after we switched from injections to an insulin pump. I'd personally stuck Arden with tens of thousands of needles in those first two years and I would have bet my life that, even though we hadn't used one in almost a year, she wouldn't have forgotten what a syringe looked like or what it was for.
Arden was diagnosed with type I diabetes at the age of two in the summer of 2006 and we switched to insulin pumping in February of 2009; for a solid year after the switch we never needed an injection.
Since that day, I'd call Arden's relationship with needles one of tolerance. That is, she doesn't like them, she doesn't hate them. We inject insulin sporadically, she gets an annual blood draw at the Endo and once in a great while... she needs dental work. Never a problem. Arden chats through blood draws, winces a bit in the dentist chair and aside from wanting to pick the injection site, doesn't much mind a periodic insulin injection.
Until recently.
A few months ago Arden had two teeth removed in preparation for braces and the procedure required her to get an injection in her pallet. The procedure went smoothly and without incident. Last month her dentist discovered a surface cavity on one of her molars (I blame overnight juice drinking), the cavity was so small that the dentist scheduled a thirty minute appointment and told us that we would't need all of the time.
I cruised into the dentist office without a care in the world, like I said, this sort of thing is never a problem but Arden did not want to get out of my car. Actually, I'm understating this - she was refusing to get out of the car, she held the door in a death grip and began to tell me how she has been dreading this visit all week. I could see that she was not joking, this visit had been weighing heavily on her mind. We talked our way through the fear (I thought) and went inside.
I never could have guessed what would happen next.
When she sat in the chair she was nervous but seemed resolved to go through with it. The doc (Great guy) prepped her mouth without issue but when he picked up the needle... Arden brought her legs to her chest wrapped her arms tight around them and refused to allow him near her mouth. She protested, argued and even screamed at the poor man. Everyone's best efforts couldn't change her mind. We adjourned, rescheduled and tried again two weeks later.
Same result.
After the second attempt, I made an appointment with a dentist who uses laughing gas and that appointment went fine. In the interim however, Arden had her quarterly Endo appointment and it was blood draw time.
Now maybe I'm a simpleton but I never saw a parallel between what happened in the dentist office and a blood draw. Needless to say, I was unprepared when Arden went on the offensive when the nurse at our Endo office brought out the syringe.
I let our dentist take the helm and followed his lead even though my parenting instinct was to be a little more forceful with the situation. I found myself standing in his office thinking, "I know that my father would have held me still and let the dentist work - is that what I should be doing?". The dentist was thoughtful, kind and cerebral. Arden was resolute. I was not sure how to handle this new situation.
When Arden protested similarly in our Endo office I immediately thought, "I have to nip this in the bud... my diabetic daughter can't spend her life making threatening gestures when nurses approach her with needles". I initially stood back to see how the nurse wanted to handle the situation, she wasn't taking any shit and honestly I thought, "Thank you". I'm all for kids having a say and I don't want to scar her but this was nuts and needed to be stopped before Arden felt like this was her new normal. The nurse made it clear that she was taking blood today, I backed her play and a few minutes later it was finished... I found myself wondering if that was the move we should have employed at the dentist. As it turns out, when Arden was faced with the reality of having a second nurse hold her still, she liked that idea even less than getting a needle. She choose between the evils and held still for her blood draw. It was uneventful just as they have always been and when it was over, Arden saw that she was overreacting. I am very happy that the nurse pushed her to comply and that I was clear-minded enough this time to follow my gut.
I'm sharing this story today for two reasons. First, I want you to know this may happen and that we handled it, but that it took a little bit of 1976 parenting to get us there. Second, I really wanted to say this next bit in context.
Please, don't turn to me when my daughter looks scared of a needle and say, "Huh, I would think that because of all of the times she gets stuck, this wouldn't be a big deal" and really don't say, "I thought she'd be tougher since she deals with diabetes every day".
Needles suck, they hurt and they are scary even if you get stuck with them a lot. If you're looking for a comparison how about if I punch you in the face ten times a day for, lets say ten years, and then see if you don't still flinch on the first day of year eleven... when I draw my fist back.
People who deal with extra life challenges deserve support, not overly critical analysis. You're good people and I can see that you mean well, but for the love God think before you speak - please.
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...
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.
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.
“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.
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.