Helping Children with Diabetes Gain Independence Part 3

If you read part one or two you can skip this little description and move on to the post...

So a while back the people who make the OmniPod asked me if I would like to contribute to their new blog called Suite D. I said yes, but I had one caveat that I honestly never thought that they would agree to - but they did!

See, Insulet wanted me to write a series of posts about how we use text messaging to manage Arden's type I and I wanted to tell that story here on Arden's Day. My caveat? I get to repost my writing here after it has run on their blog. This is not something that many websites would agree to because they understandably want their content to be fresh and exclusive -- I want to give major kudos to Insulet for agreeing. You may be wondering what I said to get them to allow me to do this... Well, it was simple really. I couldn't write for them and give them my full effort if I felt like my writing was taking something from Arden's Day and taking something from you. I was honored to be asked and I wanted to take the freelance work, but not at the expense of my readers here. So we struck a simple, and I think, very reasonable deal. I get to repost after the piece has been live on their site for at least thirty days. A BIG "way to go!" from me to Insulet for being so cool and blogger friendly! Here's part 3 of my 6 part series on gaining independence through technology.

In my last post, Helping Children with Diabetes Gain Independence Part 2: Texting Diabetes, I promised to tell you about Arden’s A1C. There are a number of things that I attribute to the reduction of Arden’s A1C, including:

• The support of friends, family and teachers

• The OmniPod insulin pump

• Finding the correct insulin dosing for Arden 

• Utilizing Continuous Glucose Monitoring (CGM)

• Taking advantage of overnight monitoring (no food makes it easier)

• The Diabetes Online Community

• Being aggressive with high blood glucose levels

• Making good food choices

• The way that we manage diabetes while Arden is at school

Our children are at school for eight hours a day and that is a substantial chunk of time. In the past, Arden would eat or take insulin and then not see the nurse again for hours, scheduling her next check around the time we expected the insulin action to compete. So if there was a miscalculation of insulin at lunch or some other anomaly, Arden would go hours with an elevated blood glucose level. By removing other people from her diabetes management process at school,we also removed the constraints of relying on those people’s schedules. Arden no longer only considers her diabetes at 10:00 AM, 12:00 PM and 3:00 PM. Now we address diabetes-related issues as they arise and have the ability to make small adjustments. Being able to bump a low blood glucose and reassess in 20 minutes is far more effective than taking in a predetermined amount of carbs, hoping for the best and addressing any high blood glucose values that may arise hours later.

Similarly, if a mealtime bolus doesn’t work the way we expect, Arden’s CGM tells us her blood glucose is on the rise and she instantly texts me. I couldn’t expect the nurse to be comfortable giving more insulin an hour after a meal, but I am. I know Arden and how she reacts to different situations. I have the full knowledge of her diabetes history in my head. I can make adjustments on the fly, just as she will be able to do one day when we transition away from me being involved with her diabetes care every moment.

This access to Arden during the eight hours of each school day allows me to have the same control I do when she is with me, because honestly… it’s like I’m there.

Now, I promised you information on her A1C, so I better get to it!

All of the things I listed above are, in my opinion, critical to Arden’s A1C. I love the fact that she sleeps for a third of every day; diabetes management is so much easier then when there’s no food involved. There are two reasons I was able to let go of my fear of nights: the OmniPod and CGM technology. Using an insulin pump is key, because it allows for the reduction or temporary suspension of background insulin. For me, manipulating temporary basal rates is the essence of controlling borderline lows throughout the day – and especially overnight. The CGM lets me know if my plan hasn’t worked out and that’s already a third of the day covered.

The part of the day that she is with me and awake is the toughest for me. Handling things like big meals at inopportune times, running to sports and homework can be challenging. And I can get tired and unfocused in the late afternoon.

Arden’s A1C was in the nines when she was diagnosed. It languished in the mid-eights for years. I finally began to combine all of my diabetes theories into a cohesive plan in the early part of 2012 and we saw a reduction to 7.8. At the beginning of this school year we managed to get that number to 7.5. I was happy! Then the new school plan went into effect, which allows me to happily tell you two things today that you may not believe…

Arden has NEVER visited the nurse’s office for a diabetes related issue since we started our texting system and her A1C is 6.5.

Update on Thursday, October 10, 2013 at 10:12AM by Scott Benner

This post was written over four months ago. Since then Arden's A1c has been tested again and was 6.7.

Holy @#%&*$% A1C

From the American Diabetes Association's explantation of Estimated Average Glucose (eAG) - check it out!

August is rapidly approaching which can only mean two things around here. The seven year anniversary of Arden's diagnosis, and the sixth anniversary of this blog are both coming soon.

Seven years in dog years is what, 49? Well in A1C years, it's 28. Arden has had twenty-eight A1c tests since she was diagnosed and most of them didn't go too well. As I've shared in the past, Arden's A1c began it's journey above nine and drifted lower over the years as I learned how to better manage diabetes. It wasn't until recently that we've made real strides in decreasing that elusive number.

I spoke in the past about the things that I attribute to helping Arden's A1c to fall. Things like finding the correct insulin for Arden, and technology like her DexCom G4 and OmniPod insulin pump. I recently wrote about Arden's decision to stop eating Fruit Loops and I think that may have put us over the top in this battle against "the number".

One year ago Arden's A1c was 8.1. Nine months ago we made real progress, 7.5 and back in January it was 7.4. I loved that 7.4 because it showed that the reduction wasn't a fluke, we were on to something! Today when we went to her Endo appointment I was certain that we would see another incremental reduction, and I was secretly hoping for 7.1. As I watched the timer count down on the testing equipment, my heart sped up just a bit. The last 10 seconds ticked away slowly, as I hoped to see that 7.1.

I'm not sure how I kept the words in my head when I saw the number, but somehow I didn't say, "Holy F*ck" outloud when the machine displayed Arden's latest A1C.

It was 6.5.

Six point five.

Six and a half.

Arden's A1c had dropped .09 in five months. I must of read that wrong I thought, so I stood up and looked closer and there it was just as clear as day, 6.5. I turned to Arden and said, "We did it Arden!". Then, without missing a beat, Arden warned the nurse that I was going to cry - but I never did. I wanted to cry, I wanted to scream into the air but I just sat back down, smiled, and told the nurse how Arden decided all on her own after our last visit to stop eating cereal for breakfast. "This was all her", I told the phlebotomist, "Arden asked after her last A1C what she could do to help it to go lower and I told her... she did the rest".

Back in February when Arden's A1C was 7.5 I listed a few simple reason that I thought helped the most to decrease her average daily blood glucose. I'm going to post them again here and then add two new ones.

Support - Love and support from family, friends and teachers is huge.

Insulin Pump - Being able to give insulin quickly and unobtrusively for meals, snacks and high BGs.

CGM - Arden's DexCom is a window to the past, present and future of her BGs and I couldn't make the pinpoint adjustments that helped us get to this new level without it. It's sad to me each day that the FDA doesn't approve it's use for young people.

Over night monitoring - Arden is sleeping almost half of each day, if you can control the night then a few bumps during the day don't hit the A1c average so hard.

Apidra - Arden's BGs are move stable on Apidra then they ever were with the other insulin she was using in the past. Make sure you are using the insulin that works best for you... not just the one some sales person gave your doc.

D.O.C. - You all give me strength to do these things when I otherwise feel like I can't. It's knowing that one of you is awake, sad, crying, happy or running around out of your mind like me that makes me realize that I'm doing okay.

new

Aggressively dealing with BG spikes - You know the ones, after a site change or miscalculated meal. In the past I preferred smaller boluses in the attempt to avoid a low but now I lean on the CGM and smack a high number in the face, preferring to catch it with carbs if I've administered too much insulin. The other way always left me bolusing and rebolusing for hours on end. The only thing I was accomplishing was taking five hours to guide Arden's BG back into place. Now, insulin, watch, catch the fall - done.

The new way that we manage BGs during the school day - Arden has four more days of school left this year and she has NEVER been to the nurse for a diabetes related reason, never. Arden and I text and speak by cell phone to manage her moment to moment type I needs. This new plan is one of the keys to her A1C reduction. In the past, I would make insulin and carb decisions only when Arden was with the nurse. This schedule left large gaps of time when high BGs, miscalculated carbs and the other diabetes anomalies would be left unaddressed. Now, Arden can text me if her BG is slightly elevated after lunch and we make small adjustments as we would if she was home with me. Lows are handle in kind, no more big carb intakes because I won't be in contact with Arden for many hours. We bump borderline lows and readdress if that bump didn't do the trick. No longer is the school day an eight hour crap shoot, Arden's diabetes is being dealt with immediately when in acts up. I plan on speaking more about this at length in the coming months.

This seems like a good time to remind you that I am not a doctor and that there is a clear message at the bottom of this page that insists that you never take anything that I say as medical advice because I do not mean these words to be such. I would however suggest talking about these easy adjustments with your doctor...

Update on Tuesday, June 11, 2013 at 2:59PM by Scott Benner

I originally posted an image with this piece that had some bad information on it. Thank you to Sara (@saraknic on Twitter) for pointing it out and leading me to the new graphic from The American Diabetes Association. Please check out their page about Estimated Average Glucose (eAG) and how it relates to A1C. Very cool stuff!

I'll have Two Eggs Poached, Toast and a Scoop of Maturity

How do habits start? Sometimes it's difficult to remember how you got where you are and with each passing day it becomes harder to imagine a life that is different. That sentiment can be applied to so many aspects of of our days, but today it will help me tell a story about breakfast.

Arden was two when she was diagnosed, that was a long time ago. Those beginning years were well before I knew about the glycemic index, before I understood that all carbs weren't created equally. Today I know better but that knowledge still wasn't helping me to break Arden's cereal habit. That girl enjoys a Fruit Loop.

It's strange to some degree because Arden isn't a junk eater, doesn't like candy and other sweets. She's the kid that goes trick-or-treating to dress up and run around, not for the candy. Yet every morning she has one cup of Fruit Loops with fat free milk - and her BG's take a hit because of that choice. It's a choice that I sanctioned many years ago, and one that I regret now but all of the talking in the world wasn't getting Arden any closer to eating something different. At some point I gave up on trying to get her to change and set out to try and defeat her spikes as best as I could. I did that with a combination of pre-bolusing, temp basals and shear will. I learned how to defend against spikes and create boluses that didn't cause a low, all because of my battle with Toucan Sam. I guess that I should be grateful for that lesson, and I am. None of that however could make me feel any less like a drug dealer when I handed Arden her cereal in the morning.

But then something wonderful happened...

Arden got tired of the spikes. She began to pay attention to her health in a way that I found astonishing, I did not expect her to make this leap so soon and it all started at her Endo appointment. Arden's A1c experienced a significant decrease about six months ago. Her NP made such a great celebration of her achievement and gave Arden a huge hug as she told her how happy she was for her. As much as I believe that her encouragement got the ball rolling for us... it wasn't until Arden's next Endo appointment that she decided to take her fate into her own hands. Three month later Arden's A1c decreased again by .01, an accomplishment for sure, but it apparently didn't hold a candle to the previous decrease, at least in Arden's mind. 

As we were driving home Arden asked me how she could get her A1c to go even lower, I could see that she was feeling competitive with that number and also beginning to think about her health in a different, perhaps more mature way. I didn't want to make too big of a deal about our conversation and so I offered a few small suggestions. We spoke about being a bit more patient before eating an unscheduled snack to give a bolus more time to work, (we pre-bolus meals but small unexpected snacks not so much). I suggested that we could exchange a grain for another vegetable at dinner and then I slipped in that making different breakfast choices would definitely help. The conversation turned to her CGM graph and I explained about how the prolonged spikes from the cereal raised her A1c. It all may sound like too much as I explain it here, but this was an easy and quick conversation in our car, nothing heavy.

One week later Arden approached me about finding new options for breakfast and she hasn't had a bowl of Fruit Loops since. She is growing up, understanding more, and I am proud to be able to say that I can see her wanting good things for herself.

I don't remember thinking even once about my health when I was eight.

Seven. Point. Five.

 

I've never said the actual number here before. I've never had the nerve to say Arden's A1c is 8.5 and no matter what I do I can't seem to get it to go lower. Back in February when Arden's A1c was at it's lowest point ever, I still couldn't tell you that it was 7.8. We had a .7 reduction in February, the biggest single leap ever, a sign that we had cracked the code and still... I couldn't say the number out loud. As proud as I was of the 7.8, I couldn't bear the thought of you adding .7 to it and realizing that her A1c was 8.5 just three moths prior.

A1c is funny. Everyone tells you not to measure yourself against the number, yet it's the only number that we measure to examine the job we are doing managing type I. I understand why I shouldn't measure myself, but if not with this, how? How do I know if we are doing okay, better, worse?

I tried, just as I always do, to not think about what Arden's A1c was going to be as we walked into her Endo appointment yesterday. I was doing a good job too because I was so focused on the fact that Arden was filling out the pre-visit form on her own for the first time. It made me think back to the first time we brought her to this office, she was two years old and this whole thing seemed like a bad dream. In those days the A1c results made me nauseas. One time, back when the tests took much longer, our NP caught me in the lobby as we were leaving to say that Arden's A1c dropped .2 to 8.7. I cried right there in the lobby when I heard the news and the NP hugged me because I was so inconsolable, so happy, eminently relieved. 

I cried because each point felt like more life, like better days. Forget the notion that we are doing something right or not, I just want Arden to live as long and as healthy a life as possible. Ironically, I want the same thing for all of the people that I love and I'm probably making far worse life choices for myself and others then I do for Arden. Diabetes is the catalyst that makes me pay attention to this degree, it is a curse and a blessing in many ways, this is one of them. Now it's six years later, Arden isn't two, and I'm not new to this diabetes thing. "It does get better", I thought as I watched her write her name on the form. Maybe not easier, but better.

You'll get better, I got better, good things are coming.

So yesterday when the NP told me that Arden's A1c was 7.5. I just smiled and said, "great". Sure my eyes tried to fill up a time or two as she praised Arden for her hard work. I was so proud of Arden that I didn't have time to make the connection between the number and Arden's health. I never thought of it like it meant more days, no arbitrary feelings that we did something monumental or did something that meant the literal difference between having a tomorrow and not. It just felt like an accomplishment, no different then if I had completed an exercise goal or written a blog post. I set out to do something and got a good result. Simple. If next time doesn't go our way, then we try again much like hitting a baseball. Just because you don't always get the result you desire doesn't mean that your approach is wrong, only that you are doing something that has so many variables that it is not reasonably within your control. Your job is to win the ones that you can and not let the others slow you down. 

I think I'm finally past the part where I think of diabetes so fu@&ing literally ever second. Yesterday, I felt happy, not relived, not like I just pulled Arden from the jaws of certain death, just happy. I think one day, if you already don't, you'll feel the exact same way because it gets better.

It was a long road from 9s to 7.5 and we aren't finished yet. The NP asked me what my short-term A1c goal was and I said with some confidence that I think I can get it to 7.1. I've identified two times of day with CGM graphs where I think we can do a better job of pre-bolusing and making better food choices. Those changes should move the number toward 7.1. I'm going to start by trying to effect those moments and see where we are in three months. I'll strike out once and a while, but I bet that by the time another three months goes by, I'll have more hits then outs. This is how, in my opinion, you should measure yourself. Simply by being able to say that you are trying with every ounce of who you are. By understanding that you aren't trying to win and that it's not possible for you to lose. As long as you don't give up, you're doing perfect!

I want to take a moment to list a few of the factors that I believe have the biggest influence on Arden's A1c results. When the NP asked me what my secret was I flippantly said, "Apidra, DexCom and not sleeping", but there is more to it then that. 

Support - Love and support from family, friends and teachers is huge.

Insulin Pump - Being able to give insulin quickly and unobtrusively for meals, snacks and high BGs.

CGM - Arden's DexCom is a window to the past, present and future of her BGs and I couldn't make the pinpoint adjustments that helped us get to this new level without it. It's sad to me each day that the FDA doesn't approve it's use for young people.

Over night monitoring - Arden is sleeping almost half of each day, if you can control the night then a few bumps during the day don't hit the A1c average so hard.

Apidra - Arden's BGs are move stable on Apidra then they ever were with the other insulin she was using in the past. Make sure you are using the insulin that works best for you... not just the one some sales person gave your doc.

D.O.C. - You all give me strength to do these things when I otherwise feel like I can't. It's knowing that one of you is awake, sad, crying, happy or running around out of your mind like me that makes me realize that I'm doing okay. 

As we walked through the lobby yesterday on the way to our car we saw a teenage girl filling out the same form that Arden had just written her name on one hour before. This girl was just on the verge of being a woman and that almost made me cry... but it didn't have anything to do with type I diabetes. It does go so fast, just like they say.

Arden's A1c is Seven. Point. Five!

Apidra SoloStar supply news

Looks like Sanofi will have the supply of their Apidra SoloStar pen back to normal levels in the second quarter of 2012. Sanofi has made the FDA aware of their timetable and SoloStar users should be happy again in just a short time.

The company has produced a web page that can help a SoloStar user navigate the supply issues and they've also extended their free Apidra offer as a way to help soften the sting of this inconvenience. We've taken advantage of the free offer even though Arden doesn't use the SoloStar pen... Nothing better then free insulin, right?

Arden's A1c is at it's lowest ever since we switched to Apidra so I'm more then excited and happy to let you all know that it's out there and for a while longer, free.