Helping Children With Diabetes Gain Independence
Part 5: Taking It One Moment at a Time
The word independence literally means, “Freedom from outside control or support.” But when we use it to describe a child who lives with type 1 diabetes, the word takes on a much deeper meaning.
I wanted to say, “Children struggle,” but in all honesty, all people struggle to be themselves every day. We are influenced by so many outside pressures that I often wonder if any of us are really being who we are. On any given day I can feel too short, too fat, too old or just not smart enough. I worry that my affections won’t be reciprocated, that I am not being a good parent, husband and son. In the past, my concern about loved ones’ reactions have stopped me from telling them how I truly feel. Yet if you asked me to describe myself and the level of independence that I felt during that time in my life, I would have told you that I was not bothered by what other people thought of me, that I didn’t feel the pressure – but of course I did.
As I sit here and write to you, I realize that I felt all of those things when I was younger and I wasn’t wearing an insulin pump or a continuous glucose monitor. I didn’t have to stop and check my blood glucose all day, people never felt obliged to tell me what to eat and I never once thought that I may pass out from not paying attention to my moment-to-moment health. Young Scott was living a pretty easy life, and yet he still felt the proverbial weight of the world.
So how the heck are we going to teach our children with diabetes to feel independent? I think the answer to that question is, one moment at a time.
I could have written a series of blog posts about helping children with diabetes gain independence through any number of experiences. I believe that people, young and old, have potential and that all they need is patient loving people to surround them with quiet strength and support. Sure, sometimes it feels good to be told that someone has your back, but often it feels better to just know. Then when life happens, alone or together, we have the inner strength to shoulder what’s coming our way. In time, with maturity and practice, we begin to believe in ourselves the way that our loved ones believe in us.
So does technology help to build independence for children with type 1 diabetes? Absolutely it does! Does it do it overnight or over the course of a single year? No. Independence is a form of maturity and the process towards becoming a fully realized person is a long one. That kind of firm base is built one experience at a time and not every step taken is a step in the correct direction. Each blood glucose check in public will build confidence. Every low blood glucose conquered is a step in the right direction. There will be moments that don’t go as planned, but don’t think of them as failures, think of them as perspective for the successes. You can’t appreciate success without knowing failure, at least not to the degree that it requires to build maturity, and none of this can happen if we are being sheltered. I know as well as you do that having a child with type 1 diabetes is different and at times scary. That’s why I added technology to our daily routine; so I could give Arden the personal space that she needs to grow while protecting, as best as the situation allows, her health and safety.
This post is part of a six part series that I originally wrote for the Suite D Blog, which is operated by Insulet. Insulet is the company responsible for Arden's insulin pump, the Omnipod. 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.
Dblog: Best of Arden's Day 2013
These are just some of my favorite blog pieces from 2013. Please let me know if I missed yours, and I'll add it to this list along with any words about the post that you have to share. I want to wish you all a safe and Happy New Year...
New blog posts will begin to arrive in early January. Be well! Scott
The Diabetic Problem - A poem by Arden
I'll Have Two Eggs Poached, Toast and a Scoop of Maturity - Arden decides that she wants a lower A1c
Hoping vs Living - Talking honestly about a cure
What Lies Beyond My Understanding - The fight to figure out insulin
Sesame Chicken you Motherless $%&^@ - The best laid schemes of mice and men
Softball Aristotle - Arden gets thoughtful
Holy @#%&*$% A1C - Celebrate
Number Thirty Seven - A scary low at the worst time
Arden's Hands are Growing - Something good has to come from all of this
The day I made Katie Couric laugh - Exciting day in an exciting year
When things go wrong, they go wrong - The title tells the tale
Helping Children with Diabetes Gain Independence Part 1 - Proud of this series
Dear Teacher: The DX - It needs to be said
Little People, Big Problems - Kids feel just like we do
What do you want to tell diabetes? - The one where you all cursed
Small World - Feel good
Fifteen-Year-Old type I told, "We are not a hospital or charity" - This is why we educate
Helping Children with Diabetes Gain Independence
This is part four of my six part series on helping children with diabetes to gain independence. I wrote this series for the makers of OmniPod, they are running it on their blog called, Suite D. If you missed them you can read the first three parts on Arden's Day here or on Insulet's site.
Part five, 'Taking it one moment at a time', is live today only on Suite D.
Part 4: Diabetes Management Plan
I began part one of this series by talking about technology and how it aids my family every day while we manage our daughter Arden’s type 1 diabetes. In part two, I spoke about the health and educational issues that lead me to want to do things differently. In part three, I jumped to the end of the story by sharing proof of my changes in the form of a much lower A1C and the elimination of missed class time. Today, I’d like to talk about the nuts and bolts of Arden’s diabetes management plan. It’s super simple…yet amazingly effective!
I’ll begin in the early morning because starting the day with a manageable blood glucose number gives you a reasonable chance of getting the rest of the day to follow suit. I like to check Arden’s blood glucose about an hour before her alarm is set to go off so that I can knock a high blood glucose or try to adjust a lower number with a temp basal. We test when Arden rises and pre-bolus for breakfast. The timing of the breakfast bolus is planned so that no more than two hours goes by before our next blood glucose look-in at 9:30 AM.
In between the breakfast bolus and 9:30 AM, Arden will text me if her CGM indicates that her blood glucose has gone below our low limit, above our high limit or shows arrows that indicate a fast rise or fall in her blood glucose. Most days, however, I don’t hear from her until the 9:30 AM pre-snack look-in. Both of our phones are programmed with matching alarms to remind us of CGM checks, pre-bolus needs, blood glucose testing and activities, such as gym class. The alarms are a back-up, as there are times that we both need reminding.
Arden’s text will arrive as simply as this: 140 >.
Depending on the situation I may say something like, “15 carbs,” “test” or “juice.” Arden responds in a few moments with the suggested bolus, a blood glucose reading from a finger stick or a suggestion for a different source of carbs. Our conversations generally last less than two minutes.
The next alarm sounds 15 minutes before lunch and we always test. I like, when the situation allows, to have Arden pre-bolus lunch unless her blood glucose is borderline. When that happens I have her bolus some of the lunch carbs early and then we do the rest when she is seated in the cafeteria. Arden’s 504 plan allows her to leave for lunch five minutes early everyday so that she can settle in and communicate with me prior to the insanity that surrounds the children piling into the cafeteria. We normally speak to each other at this look-in because there is a lot more going on surrounding a meal than during a simple CGM check or test and bolus. Our 504 plan also allows for us to call each other whenever we need, at any time of the day.
Two hours later, we take a look at the CGM. Too much lunch insulin? Not enough? This is a great time to find out and the check gets us ready for the bus ride that’s coming in a couple of hours.
Handling Low Blood Glucose Readings at School
At this point you are wondering how we handle low blood glucose levels, am I correct?
We have a stash of juice boxes, pre counted snacks and water in Arden’s classroom. Additionally, Arden carries herOmniPod PDM, CGM, lancing device, test strips, fast-acting glucose and a juice with her in a small purse. The combination of well-timed look-ins and our reminder alarms stave off most unexpected lows, but they still happen. Last week Arden’s blood glucose was falling fast during gym class. I received the following text…
“61 arrow down”
I replied, “juice then test.”
This is the moment when you have to trust the system because you have to wait for a minute or two to allow time for drinking and re-testing. It can be nerve-wracking…I won’t lie.
Arden: “Juice in.”
Me: “Dizzy?”
Arden: “No, I want to go back to gym.”
Me: “Calling.”
We spoke on the phone and Arden told me that her CGM arrow was already turning back up, she did not feel dizzy and reiterated that she wanted to go back to the activity.
As much as moments like these can scare me, most of the fear that I’m feeling is really Arden gaining independence, and of course, me giving away control. But isn’t that what I want and is there really a better way for her to learn?
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.
Sports Induced Adrenaline
It that time of year, basketball and other indoor running sports are in full swing. Diabetes common sense dictates that an hour of running could and likely would cause a drop in your child's blood glucose level. Some of you, heck - most of you, probably have that exact situation going on. Basketball, soccer and other running based sports probably have you checking BGs, whipping out juice boxes and worrying during early morning games in gymnasiums all over the world.
But if you have a very competitive child... you may be experiencing rising BGs that are impossible to trace. This is the case for Arden. During basketball practice last week her starting BG of 130, never moved throughout the almost ninety minute practice. Arden ran drills, shot the ball and played defense at practice speed (Slower than in a game) without experiencing a change in her BG. As it turns out, when the scoreboard lights up, Arden wants to win, and she wants to win enough for her fight or flight response to kick in.
I've devised a plan in which we bolus at the beginning of her basketball games in the amount equivalent to what a juice box would require. Most games, I can keep her BG around 180, but last week it jumped up to over 200 and caused me to have to bolus again during the game. The problem we run into with covering adrenaline is this... As soon as the game is over, the adrenaline disappears, and Arden's BG quickly begins do drop.
That's when the adrenaline bolus needs to be feed, luckily Arden is particularly hungry after she plays. This week she fed the bolus a waffle.
You can really see what I'm talking about in the DexCom image above. Arden woke up at 8 AM and I gave her a small correction that didn't do much by the time the game started at 9 am. By the end of the first quarter though, I had to give Arden a huge correction bolus (Big for her, 1 unit) to combat the significant rise (Her DexCom arrow was straight up). By the time the game ended and we sat down in a diner, Arden's CGM was reading 140 with an arrow straight down, I still bolused for half of the waffle, and as you can see Arden's BG was 101 and steady as we left the restaurant. Be aware that these mornings need to be tracked closely in the hours that follow, because after all of the insulin and food finishes, you never know which way BGs are going to go.
Please also keep in mind that the amount and severity of the adrenaline fueled rise will vary from person to person or it may not happen at all. It really does depend on the individual's level of competitiveness, for some children, basketball may react like other exercise. Arden's team lost on Saturday, but she scored all eight of her team's points. You should see her go, she definitely plays with adrenaline!
Tech Note: Don't forget that the DexCom G4 signal seems to become amplified in some gymnasiums. You may be able to keep the receiver with you as your child runs up and down the floor without losing connectivity. It works for us. I even gave Arden a bolus with her OmniPod PDM this week while she was playing in the game.
Surfing Santa
So we ventured out into the snow late Sunday afternoon to check out a huge Christmas light display about thirty minutes from our house. On the way we stopped to have a quick bite, Arden tested her blood glucose and just as we were about to bolus... the batteries in her PDM went dead. I immediately looked around the restaurant for a fix, my wife told me that she saw a convenience store as we drove up, but that I would need to get back into the car to get there. Truth be told, I didn't want to go back out into the snow, but moreover, I didn't want Arden to miss her food because she was waiting for me to return with batteries. I began looking around for an answer when it hit me, the restaurant had televisions covering almost every inch of it's walls, "I bet they have a drawer full of TV remotes", I thought.
A few minutes later the bartender was pulling two triple A batteries from one of his many remotes, and Arden was back in business. The very kind bartender wouldn't even take the batteries back before we left...
The Christmas lights were a blast! I mean, were else are you going to see a giant Santa on a surf board?!