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!

DSMA Live: Parents Talk (feat. me) Audio

Apparently I have a lot of thoughts on a multitude of subjects and DSMA Live 'Rents, was a perfect place to share them. I'm confident that you will agree... my appearance is not as entertaining as 'The Avengers' but I can promise this, it is 200 times better, then 80% of ABC's comedy TV lineup. Enough build up, here's DSMA Live: Parents Talk from December 17, 2012.

Listen to internet radio with DiabetesSocMed on Blog Talk Radio

DSMA Live and DSMA Live Parents Talk is also available on iTunes and on the DSMA website. Please consider adding a DSMA Twibbon to your avatar and/or making a donation to help DSMA obtain tax exempt status.

Argo

We don't have many diabetes ready babysitting options, and so we don't go out very much by ourselves. I'm sure that sounds familiar to a lot of you. Earlier in the week I found myself wishing that Kelly and I could get away for a couple of hours and then it dawned on me... Arden and I are managing her blood glucose so well via text messages from school with no adult involvement, why couldn't we do the same with her at home and me in a remote location?!

I enlisted my mother to babysit and told her that there wouldn't be any diabetes related decisions to be made. So with the comfort of knowledge that our New School Plan has brought, Kelly and I made our way to the cineplex and saw a movie that didn't have one, not one, talking animal in it!

It was the opening night of 'Argo' and so the theater was packed. Since we couldn't find a seat without a direct neighbor, I felt like I owed the person sitting to my left an explanation for why I'd be texting during the movie. A few moments before the trailers were about to begin I excused myself and spoke to the woman sitting next to me.

"Hi, I'm sorry to bother you. Our daughter has type I diabetes and I'm going to be helping her manage her insulin by text message during the movie". I was prepared for about a thousand different responses, every possible reply except for the one that I got. "Us too, well, our daughter has type I too", she said. "She's older now... how old is your daughter, when was she diagnosed?". We chatted for a few moments about our girls and then she said not to worry, put her hand on mine and told me that she hoped we enjoyed the movie. I smiled and said, "you too". It was like twitter, but in real life.

I guess we can get out more often now... It's been so long, pretty excited!

Oh, and both Kelly and I thought that the movie was excellent, really, really well done. Suspenseful and tense, even though we knew the outcome.

Emojis for texting DexCom data: A New School Plan Update

We are three weeks into the 2012 school year and I am back to report some amazing news. I'm not even sure I believe this, but Arden has yet to visit the school nurse for anything diabetes related. Not once, nada, zero times!

Our New Plan is working even better then I imagined due in large part to how smooth technology has made the transition. Apple's latest upgrade to the iPhone software included the addition of an emoji keyboard and we are making good use of it in our conversations about type I.

We try to keep our interactions as short as possible to minimize the time Arden is distracted from her school work. I estimate that our plan saves Arden from missing between forty-five minutes and an hour each day of class time, but there is always room for improvement. So when I noticed that our texting conversations were taking more time then I thought they should, I wondered why. Arden and I spoke and it turned out that she was struggling to spell some of the words that we use to discuss her DexCom CGM data. Words like, diagonal and horizontal. Other issues were less to do about spelling and more about word count. For example, "189 diagonal up" or "143 straight across". That's when I thought, "if there is an emoji of a heart, dress, shoe and dog pooh there must be arrows".

and there was...

So now we are speaking to each other with even more economy of time and our texting conversations have been trimmed in half, which makes more time for learning.

Emoji can be activated on Apple devices running iOS 6 like so. Settings>General>Keyboard>Keyboards>Add New Keyboard>Emoji. If you talk to your child about their DexCom data via text message this is more then worth your time to set up.

Another nice feature to check out is 'Send Read Receipts'. This one is great not just for diabetes, but for every parent/child texting conversation. Send Read Receipts allows you to see when the person on the other end of your conversation has read your message. It looks like this...

This setting is accessible by taking these steps. Settings>Messages>Send Read Receipts. Changing the setting to on "Allows others to be notified when you have read their messages". No more wondering if the person you are texting with has seen your message. Turning this feature on is a no-brainer for parents, but if you are trying to avoid someone, well, that's a whole other consideration.

Day one of our New School Plan

Arden went back to school today to begin the third grade so it's time to put our new plan into action and see what happens. I had a nice 45 minute meeting with Arden's teacher and school nurses yesterday so we could discuss how the shift in care was going to happen. Having interested, committed and kind people on the other side of the table is such a pleasure, I wish I could thank them everyday for being so wonderful and adventurous.

I say adventurous because today Arden became the first child in the history of our school district to manage their type I diabetes without being required to do so in the nurse's office. I say wonderful because even though we are forging into uncharted waters, no one at the school is freaking out or getting cold feet. I suggested yesterday that we just begin down our new path together and let the process grow and adapt at it's own pace. I was thrilled when everyone agreed even though what I was asking for is covered by state laws protecting children with diabetes and Arden's Endo backed 504 Plan. What I hear from so many of you is that most schools get scared and put up walls when you try something different. For that reason alone I feel very lucky today that I have the relationship that I do with these amazing educators.

What is this New Plan all about? How does it work?

In the past Arden visited the nurse for every diabetes related decision but now she will only be going to their office if an emergency situation arises. We are going to try and limit the visits to unexpected low blood glucose readings, dizziness and other such moments that feel like they aren't manageable over the phone.

I began my day by visiting Arden's class to explain that this year would be different then last. Arden's entire class moved from second to third grade together this year and their teacher stayed with them so everyone understands the nuts and bolts of Arden's nurse visits and testing. This short talk was to take a bit of the excitement away as I don't want the exuberance of the children to cause the teacher or Arden to feel uncomfortable. You may be wondering how seeing something that they all witnessed last year as Arden's nurse visit companion will be exciting? Well, Arden will be communicating with me from her desk with her iPhone. We will be using text messages whenever we can but Arden also has carte blanche to call me and I her as we need/see fit. Talk about progressive, right?! 

I'll be right back... she's texting now...

We just set a temp basal via text and she is going to test in 30 mins and then text me. This is working!!!

Anyway, there are snacks in her class (see above) plus juice boxes in a small refrigerator. She will be carrying her OmniPod PDM as well as a juice box with her from class to class and every room that she visits (Gym, library, etc.) also have snacks stashed with the teacher. I've tried to set the school day up so that her experience in the building mimics the one that she has every other day. Arden doesn't make her bolusing decision autonomously yet so with the exception of the texting/calling, this won't be any different then when we are at home. Actually, sometimes we do text about BGs from room to room so I guess this is almost exactly the same.

Why is this so different?

Arden's school district teaches a number of children with type I diabetes. Many of them test and bolus without supervision, especially the older kids, but they all do it in the nurses office and then record their actions into a log. The school can claim what they want but the log is mainly kept to protect the school from litigation. The kids may use it for reference but make no mistake, it's there to cover asses. Arden doesn't have to submit logs to the school and unless she ends up in with the nurse for care, they won't be apprised of the steps we take throughout the day. It's a different approach then most take but I think it will go a long way toward giving Arden more confidence and independence. Perhaps best of all Arden won't be leaving class so much throughout the day. I found myself so concerned with type I related safety at school that at times I was willing to ignore that so much of the education day was being missed.

typos: Daddy 1 - Arden 0

Day one wrap-up:

Our new plan worked well on the first day. There was one instant where Arden didn't hear her text message alert so I waited for a few moments and then called her. I received texts during class, library and from the bus. There was a bussing issue in the afternoon that caused Arden to be stuck on the bus for much longer then we plan for and her BG did begin to fall during the ride. The entire event was handled by Arden with one text and a phone call.

Later in the day I received a phone call from Arden's teacher, she just wanted to reach out to say that everything felt smooth on her end and the addition of the testing and phone to the room was never an issue. She praised Arden for being so mature with the phone, we chatted for a few minutes and agreed that day one was a success. On to day two...

Special Request

I held this post back for one day so that I could write about the 'Unfathomable Loss' that one of our fellow DOC members recently experienced when her husband was taken suddenly by cancer. I hope that you can take the time to read my post about Meri and her family.

Update on Tuesday, October 2, 2012 at 8:28AM by Scott Benner

The first follow up to this post, 'New School Plan UPDATE: Emojis and texting DexCom data' is located here