Helping Children with Diabetes Gain Independence
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.
Part 3: Kicking Diabetes’ Butt!
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 2013-10-10 14:18 by Scott Benner
This post was written over four months ago. Since then Arden's A1c has been tested again and was 6.7.
Please know that I was compensated for my writing in an amount that would be considered standard for freelance blogging. My family pays for Arden's OmniPods with insurance and out of pocket cash. My writing for Insulet has no impact on my opinions or the information that I share here or anywhere online.
Fifteen-Year-Old type I told, "We are not a hospital or charity"
Many years ago when I was in high school my best friend was diagnosed with type I diabetes. Mike took shots, carried insulin and needed to eat when he said that he needed to eat. Aside from those considerations, he never really spoke about having diabetes. We hung out together constantly, had meals, went on double dates; saw movies and the rest of what you would expect friends to do together. I was around Mike and his diabetes almost all of the time.
Yet I didn’t know much about it.
Mike had so many diabetes related decisions to make and even though we were often together when he made them, I was lost when Arden was diagnosed. As the days after her diagnosis slowly turned into months, I never found myself thinking, “no problem, I remember this from Mike...”. Nothing that I ever saw, heard or experienced with my friend prepared me to thrive or even merely exist with type I diabetes and I was as lost as the next person when it came to really understanding any of the intricacies of type I. It’s my experience with Mike that taught me to be patient with people who don’t understand diabetes. Sure, I still get annoyed and I certainly wish that the average person knew what Arden may one day need them to know in an emergency, but it’s just not reasonable to expect people who don’t live with type I second by second to understand it in a meaningful way.
Yesterday morning I saw a FaceBook post that Mike ‘liked’, it told the story of a fifteen-year-old boy with diabetes who was turned away at his local 7-Eleven when he asked the cashier to help him. I was instantly struck by the story and reached out to the boy’s mother, Katie Franklin. I asked Katie to share her families experience in the hopes that it would promote advocacy and awareness.
Tommy was riding his bike Monday after school when he experienced low blood glucose and because he was without money or supplies, he smartly went into a nearby 7-Eleven to ask for help. Katie tells me that Tommy asked the cashier for a fountain soda or candy because he has type I diabetes, his blood glucose was low and he feared that he was going to pass out. Katie says that Tommy doesn’t normally get so low that he feels this way so he knew that he was in a dire situation. The clerk, who was at a disadvantage because of a language barrier, declined by saying, “No”. The boy persisted and even showed the cashier his Medtronic insulin pump as proof of his need but the reveal of the pump didn’t change the clerk’s mind. Tommy left the store, rode his bike about a block and then called his mother at work; she rushed to him and found Tommy lying on the ground next to his bike. Tommy ate and felt better in time.
Katie drove directly to the 7-Eleven and asked to speak with the manager. Katie said that the manager told her that “we are not a hospital or charity” and when she tried to tell him that all her son needed was a twenty-five cent piece of candy and that it may have meant his very life, the manager walked her down the candy isle to show her that they don’t have candy that inexpensive. Katie, realizing she wasn’t getting anywhere with the manager, got the number for the corporate office and left the store. She was so incensed that she called the office from the store’s parking lot and spoke to the District Manager who promised to make sure that his stores understood type I better.
Katie was surprised when the owner of the 7-Eleven called her the next day because it wasn’t the DM that informed him of the disaster at his store. The owner found out about the incident the same way that I did, on the Internet. It’s important to be clear that the owner of the 7-Eleven was horrified at how his employees treated Tommy and his mother. Katie tells me that she found his apology to be sincere and that she is comfortable that he will take steps to educate his employees. The owner explained to Katie that he owns a number of 7-Elevens and that he will make certain that they all understand what diabetes is and how he want’s his employees to react when someone shows signs and symptoms. He even agreed when Katie suggested that a donation to the JDRF would go a long way toward making her feel better about what had transpired.
I know that Tommy’s story is horrifying to those of us who live with diabetes. It’s frightening to the parents of children with type I and I can only imagine how infuriating to the adults reading this who live with diabetes - but that’s not why I wanted to tell Tommy’s story.
I want to tell this story for two reasons. First because I know, thanks to my friend Mike, that everyone can’t understand type I diabetes but also because I think that we as a community are helped when we are remind periodically of that fact. I can personally see how the cashier, whose grasp of English and no experience with diabetes may have been confused when Tommy made his plea. I can’t however find a way to excuse the manager’s insensitivity and apparent lack of human kindness. I was heartened to hear from Katie that the storeowner understood what she was saying to him and offered what Katie characterized as an appropriately contrite apology. I say heartened because the owner’s reaction tells me that this story can find people who will be changed by it, that this story can make advocates out of people who previously didn’t understand type I diabetes.
The second reason that I think that Tommy’s story is valuable for us to hear is because of the reaction that some people online felt comfortable thrusting in Katie’s face. Please understand that her story was met with a ton of loving support but there were still some people that took the opportunity to chastise Katie for what they considered to be poor management of her son’s type I. What Katie said to me regarding those harsh comments needs to be heard by the parents of younger children living with type I. People told Katie that her son should never be without glucose and money and that it was a failing of her parenting that he had neither with him on Monday. Not having supplies probably seems foreign to the parents of small children because we tend to always have supplies with us but Katie told me a story that sounded all too possible and I can’t say that it won’t be all of our stories at some point in our lives. Tommy was diagnosed when he was thirteen and he’s only been living with type I for two and a half years. Katie has tried giving him money for emergencies, but he spends it. She’s tried to give him candy to carry, but he eats it... Tommy even likes the taste of glucose tablets so they get consumed as well. Katie is traversing a rocky road with her son and I can’t understand or condone anyone that would harshly judge her efforts. It can not be easy to help a fifteen-year-old boy come to terms with what diabetes demands of him. Shame on anyone who felt pompously that they knew better and then took it upon himself or herself to chastise Katie.
It’s annoying yet understandable when the world at large doesn’t understand our lives but it’s a totally different feeling of sadness to learn that people can so easily, especially in a community like the one we all share, turn on another.
If we can’t give each another the benefit of the doubt and extend the kindness that we all know our lives need and deserve, how can we possible hope for that kindness and understanding from the populous at large?
I know that this was a long and heavy post so I want to end it with a story about Tommy that I think we can all appreciate and cheer for. Tommy diagnosed himself with diabetes. At thirteen years old he took to the Internet to search for his symptoms. Tommy told his mother that he wasn’t feeling well but before they could get to a doctor and driven by what I can only assume was the discomfort that a BG of 795 brings to a person, diagnosed himself during a school day and then posted on FaceBook that he thought he had type I diabetes. His mother saw her son online when he shouldn’t be, read his post and took him to the hospital where Tommy’s self diagnosis was sadly confirmed. I love the idea of a confident thirteen year old advocating for himself with the tools that he has at his disposal, almost as much as I admire a fifteen-year-old boy having the nerve to walk penniless into a 7-Eleven and ask for help. I think that Tommy has a lot to look forward to in his life, not just as a strong advocate for himself, but I have a feeling that his story will create advocates where there previously were none and renew the passion in those already advocating so hard. Thanks to Tommy and Katie there are a few less people in the world today who don’t understand.
Helping Children with Diabetes Gain Independence
If you read part one 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 2 of my 6 part series on gaining independence through technology,
Part 2: Texting Diabetes
I sat down in my daughter’s 504 meeting after she finished second grade with a plan. Each year we make small adjustments – preparations for new aspects of the school day that come with advancing to the next grade level. These meetings are very productive, somewhat brief and usually not very eventful.
The nurse began to talk about how we could give Arden a little more responsibility with her diabetes management in third grade. This was something we did each year during this meeting and sometimes, if warranted, during the school year. We strive to shift Arden’s diabetes care onto her plate bit by bit, as she is able to accept new responsibilities. The idea is to slowly get her acclimated until the day comes when she is completely self-managing her diabetes without even realizing anything has changed.
I like that process very much and it was working extremely well. So well, in fact, that before the nurse could finish her thought I stopped her and said, “I don’t want Arden to come to your office next year. It takes up too much of her day and I think the lost time is damaging her learning process. She is missing vital parts of instruction and I want to change that.” They of course agreed, but were initially confused about how I intended to change the situation.I continued, “Arden is going to manage her diabetes herself from now on and I am going to help her. She will handle everything right from her desk and I will oversee each decision with text messages (and phone calls if and when necessary).”
Cue the blank stares…
I filled the silence before anyone could protest too much. Our previous governor signed a bill giving students with diabetes the ability to test their blood glucose anywhere in the school. So testing in the classroom wasn’t an issue. And Arden’s 504 plan already allows her to carry a cell phone, so all I needed to do was explain that sending text messages wasn’t going to be a distraction to the other students. They were intrigued.
I began to explain how much better I imagined Arden’s A1C would be if we could make small adjustments throughout the day instead of only addressing her blood glucose every few hours. Then I turned to her teacher and asked how much cumulative time she thought Arden missed each day while she was at the nurse. She replied, “Forty-five minutes maybe.” I didn’t hesitate to show off my impressive math skills and said, “That’s almost four hours a week… fifteen hours a month.”
They couldn’t disagree with my argument. Everyone knew that a student can’t thrive when they miss that much of their school day. There were a lot of faces in the room and I could see on each one of them that I had made my point. I reassured them that my idea would work and that we should try.
Arden and I practiced all summer and came up with our own little diabetes management shorthand. I found a few emoticons that were representative of the arrows on Arden’s continuous glucose monitor and we were off.
Putting Arden’s New Diabetes Management Plan into Action
Today, almost one complete year later, even I can’t believe how well my plan has worked. One week towards the end of the school year Arden’s blood glucose had been low all week. I didn’t know why. I had been using temp basal rates and adjusting boluses, and she just kept running low. I’m talking about blood glucose levels in the 50, 60 and 70 range – situations that required immediate action.
But guess how many times Arden had to go to the nurse’s office that week? Zero. Guess how many times Arden had to go to the nurse’s office all year? Yes, you guessed it… zero! Arden did not need to leave her classroom once to address a diabetes-related issue. We treat lows, bolus for highs and count carbs all with text messages like in the screen shot above.
This simple technology that most everyone possesses is one of the most valuable and productive diabetes technologies that we employ. The independence that it gives Arden and me is unmatched. The peace of mind that being able to text her brings me is soothing. The effect that this process has had on her diabetes management is staggering! Just wait until I tell you about Arden’s A1C in my next post.
Please know that I was compensated for my writing in an amount that would be considered standard for freelance blogging. My family pays for Arden's OmniPods with insurance and out of pocket cash. My writing for Insulet has no impact on my opinions or the information that I share here or anywhere online.
FDA Approves Medtronic Low Glucose Suspend
"MINNEAPOLIS – September 27, 2013 –Medtronic, Inc. (NYSE:MDT) today announced the U.S. Food and Drug Administration (FDA) approval of the MiniMed® 530G with Enlite®, a breakthrough, first-generation artificial pancreas system with Threshold Suspend..."
Read the rest of this exciting press release at the link.
In Need of a Vacuum Cleaner Recommendation
My life really is strange sometimes. Yesterday I was in a Manhattan studio for a Lilly Diabetes satellite media tour where I was interviewed, along with Amy Hess-Fischl, twenty-nine times by different television and radio stations from all around the country. It was a whirlwind day that began at four in the morning. We gave one interview right after the other for almost seven hours, it was a really fun day of talking about sleepovers, diabetes management ideas and the Lilly/Disney collaboration at Spoonful.com/type1.
The bright lights of the big city didn't last too long for this stay-at-home dad. When I arrived home yesterday my son was sick, the laundry was piling up and Arden had homework to do. I got back into my routine pretty quickly and this morning things were back to normal here at home.
I found the kitchen counter this morning after the kids left and gave it a polish, then I thought I'd do a bit of vacuuming before I had breakfast but something terrible happened. My closest comrade in this life, my partner, the yin to my yang - she passed away suddenly. I don't know what I'll do without my little buddy, but I guess I'm just going to have to press on. Sure she sucked at her job and I never liked the yellow jacket that she wore, but Eureka... she tried.
Anyway, here's some pictures from yesterday's media tour and audio from one of the radio interviews. After you take a look, if you have a good one, can you please leave a vacuum cleaner recommendation? I need a sturdy upright that does wood and carpet and I like a nice wand for the corners and such. Not too expensive but I'll spend some money for a vacuum that'll last. Thank you!
Audio - Radio Interview with WIBC Indianapolis
