You may have heard the announcement of the results of the STAR 3 study last week. Amy of Diabetes Mine had a hot-off-the-press post about it here.
I had the opportunity to speak with Dr. Francine Kaufman of Medtronic about this study on behalf of TuDiabetes. Please visit me there to read what she had to say.
To me this study validates what many of us already believe – that the use of sensor-augmented pump therapy leads to improved blood glucose control. I hope the claim that this will become the standard of care is realized and the troubles that people continue to have getting insurance coverage for these devices becomes a thing of the past.
I also hope that this momentum will continue to bring us within real reach of that artifical pancreas so many parents (me included) are hoping for our kids before they head off to college. Should it come sooner, even better!
First things first: this approach works for Caleb. It may or may not work for you. I am by no means suggesting that anyone should apply the following theories to their diabetes care. I am only explaining what I do for Caleb.
For weeks, Caleb’s most predictable BG of the day was pre-lunch. Without exception it had been in range. It was sensor change day and we were operating in the blind start-up period. No worries though because this time of day hadn’t posed an issue in quite a while.
It’s approaching lunch time so let’s do a finger stick. 289.
Okay. Oh well. It happens. There was more fiber in his breakfast than usual and he was a little low at the postprandial check. Ah yes, hindsight is 20/20. Moving on. Now back to this 298 and we are getting hungry for lunch.
John Walsh explains it as follows: “A Super Bolus is created when some of the basal insulin delivery is stopped or partially reduced, and delivered instead as additional bolus insulin on top of a normal carb or correction bolus.”
The intent is to get glucose levels back in range quickly without inducing hypoglycemia. Here is how Caleb’s super bolus went that day:
Correction: 1.50 units, plus
Meal bolus for 50 carbs: 2.00 units, plus
Basal for the next two hours: 0.70 units, equals
Total units delivered: 4.20 units.
Lastly (this is critical) turn basal to “off” for two hours.
The change in the timing of the basal insulin makes all the difference. Front-loading it and delivering it with the meal and correction bolus makes it act faster and all at once, thus bringing glucose levels back in range sooner. If left as basal, the end result will be the same, but it will take more time and hyperglycemia will last longer. The same amount of insulin is delivered when using a super bolus, it is only the timing that is different.
Back to life, start preparing lunch.
1/2 hour after superbolus: 169
Perfect. Coming down fast and lunch is ready, let’s eat. 50 carbs consumed.
1 hour after superbolus (1/2 hour after eating 50 carbs): 109
Excellent. The first time I tried this, I panicked a little at this point. A 109 an hour after a bolus that large is cause for worry. But his basal had been zero for an hour and he still has food in his system. Plus his basal will be zero for another hour.
DexCom had been calibrated with that lovely 289, which we confirmed after washing hands with a 288. DexCom showed him cruising between 85 and 100 over the next hour.
2 hours after super bolus: 89. Wonderful.
I know a bolus of that size is still hanging around in Caleb’s system beyond the 2 hour insulin duration that we use. However Caleb’s basal insulin has just now resumed. He hasn’t received any basal or other delivery of insulin for the last two hours. Any tail of insulin duration from that super bolus is required for his basal needs.
And it worked. He continued to hover with a nice flat arrow through the afternoon until dinnertime when a finger stick confirmed a BG of 98.
I invite you to read more of what John Walsh has to say about using a super bolus. He suggests its use for high glycemic foods or large intakes of food in order to avoid blood glucose spikes. I haven’t tried in those situations yet, but I plan to. He also speaks of pumps giving us the option to deliver a super bolus automatically. The thought of it gives me chills.
I think the first time I “met” Bill was when he commented on Caleb’s low video and dubbed him a “Diabetic Ninja“. Shortly thereafter he named Caleb “Diabetic of the Day” in one of his own videos. Bill was one of the first people who found us through Caleb’s face on YouTube. I remember how Caleb smiled when he saw that he was in Bill’s video. As I’m sure was intended, it made him happy.
We have kept in touch with Bill and he and Caleb even have a friendly rivalry over their favorite baseball teams – Bill’s Red Sox v. Caleb’s Yankees.
Through Bill, we met Suzanne. Suzanne and I tweeted a great deal about DexCom. She answered my unending questions and understood my apprehensions about putting Caleb through another skin piercing process. She knew of Caleb and Bill’s relationship and asked if a video from Bill might help us prepare for our training. Of course the answer was, “yes”.
So Bill and Caleb made a deal to make videos for each other. Here’s Bill’s:
Suzanne also joined in the video encouragement:
To which Caleb responded:
Bill and Suzanne helped us so much through our CGM transition. They went out of their way to make these videos for Caleb and sent us many heartfelt emails and tweets. Thank you my happy diabetic friends!
Caleb started using the DexCom Seven Plus continuous glucose system in September. This week was his first endo appointment since starting, a tidy three months later. I had no apprehensions about this appointment. In fact, I expected us to be in and out quickly. We just needed an update to Caleb’s prescriptions in addition to the normal routine.
I was however curious to see what impact using DexCom had on Caleb’s A1C. His A1C results have always been strong and we seem to keep chugging along.
This quarter’s results were no different. His A1C was unchanged. I wasn’t necessarily expecting a change, but I am a numbers and measurements kind of person. Even if it went up, I could say we were dealing with lows better. We had introduced a significant enhancement to his diabetes care. It seemed odd not to have it reflected in “the number”. If there had been any measurable difference, then I could attribute it to CGM and thus justify its use. His A1C was not giving me that justification.
So why are we doing this?
My biggest reluctance to starting CGM was asking Caleb to endure more discomfort without realizing a tangible benefit. He would have to be poked. He would have to wear the transmitter and carry the receiver. He would be the one who would be interrupted by all the beeps and alarms. Of course this is all to improve his glucose control, but that’s not measurable to him. I would be able to rest a little easier at night. I would be less stressed when separated from him. I would be less anxious between finger sticks wondering what was going on inside him. It seemed he was making all the sacrifices and I was getting all the benefit. So it would be nice to have something to point to to say yes indeedy, this is worth it – look, your A1C shows it. There’s no doubt about it. This was the right thing to do. It’s all here in black and white.
That is not the case.
Caleb’s doctor explained that when you already have tight glucose control, CGM typically will not change your A1C result. However, the quality of that result is often improved. In other words, the average of your blood glucose is still the same, but you are avoiding the high highs and the low lows that cancel each other out. The peaks and valleys are more subtle. The A1C remains unchanged, but it’s still a “better” A1c.
Hm. Okay. So do I believe that is the case with Caleb? It may be. I feel like we have caught things quicker and there are less surprises. We still have highs and lows, but they seem less severe. I don’t tend to go on feelings though. I like hard facts. Embracing this concept, although perfectly logical, isn’t all that easy for me.
After tweeting my concern (and doing a poor job of it because I led people to believe that I was a bit of a lunatic and wanted Caleb’s A1C lower and truly that was not my objective at all) I believe I got the justification that I was looking for. My wise friend, Melinda, helped me get there. She has a teenage son who has lived with diabetes since he was just younger than Caleb is now. Talking to her is like taking a magical trip into the future and getting a flavor of what it might hold for us.
I realized, with Melinda’s help, that an A1C isn’t the only way to measure the success of CGM. From the beginning I have stated that DexCom provided me some relief. I could see things before my eyes instead of worrying and wondering. I think I got so used to that so quickly, that I didn’t realize how much of an impact it has. I know that I am generally less anxious about Caleb’s BGs. I am wound pretty tightly to begin with, so it doesn’t take much to get me excited. There is a true, tangible value in decreasing the stress factor. It’s one that is very important to me. I know that Caleb has a lifetime of this management in front of him and how I handle it today will impact how he handles it tomorrow.
These are Melinda’s words that eased my worries:
“But HE benefits from having a less stressed-out parent. They certainly pick up on our cues. There’s a lot of value in that too.”
I know I do a good job of keeping Caleb’s blood sugars in tight control. I also know I do a poor job of hiding the impact the out of range numbers have on my psyche. That is where I need help and DexCom has provided it.
The answer is no, A1C impact is not all there is to CGM. There is much more. Thank you Melinda and all my Twitter friends for helping me understand that.
A little over a year after Caleb was diagnosed, when the fog had cleared, we had experienced all our “firsts” and things were more or less chugging along, my attentions shifted. The present was under control, now what about the future?
I made my first video. The intent was to bring attention to work being done to find a cure for type 1 diabetes. It turned into so much more than that. It entered me into a world I hadn’t realized existed, or at least one that I could be so much a part of.
Caleb, his face, his story, his personality, have all stretched across the world and brought me, and him, within reach of a support system that we would not otherwise have. I am so grateful for this unexpected byproduct.
This is my first work. When I made it, I could not watch it without crying. No matter how many times I watched it, I would choke up. Now when I watch it, there are two things that I note: (1) how much more effective my message could have been had I made it more succinctly (yes, it’s long – sorry), and (2) how my perspective has changed. The story is still true. The spirit of the message still resounds. But now I know the Caleb who has been living with diabetes for almost three years. He has adapted. He has flourished. He has shown me what perseverance is. Diabetes does not define Caleb. He just happens to be living with it. I can watch the video now without tears because I know that Caleb.
So, as this and other videos I have made begin, This is Caleb…
It’s been almost two months since Caleb had his first DexCom insertion. Thankfully, the learning curve of CGM is not nearly as great as that of pumping. Plus, if something goes wrong with the transmitter or sensor or even receiver, there is not as much panic as when something goes wrong with an insulin pump (like ripping it off the first night because you completely forgot about it). You’re not cutting off life support after all.
So the transition to CGM is much more subtle than the transition to pumping. That was a relief.
We have had a couple of bumps. For nights on end, it would just not work. It literally seemed to go to sleep when Caleb went to sleep and wake up when Caleb woke up. With some help from fellow DexCom users, that was resolved. The receiver works great when it’s in the bed with Caleb. Not so great on the nightstand or windowsill. We had a receiver go kaput. We’ve had a couple of off sensors – one just complete fail. DexCom replaced them.
But otherwise. No real issues. It’s kind of “plug and go”. Our training consisted of watching the nurse do Caleb’s first insertion. Oh, and I read the manual.
CGM has had an immediate impact in several ways.
I was instantly more relaxed. We had pizza that first night and I wasn’t on edge wondering if I got the initial bolus right or if the extended bolus would cause him to go low. I could watch the changes in Caleb’s BG as they occurred. But on the flip side, I get stressed as I watch the BG rise. And when it continues to rise despite corrections, it’s downright maddening.
Because the blindfold is off, I could see for certain what I always suspected. Caleb’s blood sugar was often rising significantly within the first hour after he ate. It came back down at the two hour mark and I saw the happy in-range BG we typically see with fingersticks, but now I knew for sure what was happening in between. Frankly, it was depressing. His graphs looked like the lie detector charts of a big fat liar. I mean, serious pants on fire. It wasn’t surprising, but there had been comfort in dealing with the ten or twelve points in time and just ignoring the rest.
This new knowledge is power. I was able to make basal changes or adjust the time of a prebolus making immediate impacts. Caleb’s chart looked more truthful right away.
CGM provides another form of relief – during the times when I, his diabetes manager, am separated from him. Caleb has a great support system at school, but now there is an added safety net. Should he not feel a low coming on, there is a plan B. Another voice buzzing from his hip that might notice a low before he does. This applies to other times too – like after-school activities or the rigors of Walking Club before school on Wednesdays. We have a little more freedom; a little less stress.
In general, there are times where we simply have information that we would not otherwise have; times when we do not have to stop, open up his PDM case and go through the whole exercise of a fingerstick. A quick peek and we have a sense of what to do. We’ve either eliminated the wonder or saved the inconvenience of an extra BG check.
And here is my favorite thing about CGM: I love, love, love the directional arrows.
Directional arrows make all the difference in the world to me. If a regular blood sugar meter could tell the direction of blood sugar levels, even with just 10 points in time each day, that would be a huge improvement. If Caleb is at school and the nurse calls me with an unusual situation, she will tell me his BG from the finger stick and the direction of the CGM. This can change the course of action from that if only the BG was available. If I had known the direction of Caleb’s BG that night after eating pasta at the restaurant, I KNOW we would have avoided that low. I would have seen “121” and double arrows down. That is so much more meaningful than just “121”.
The last enhancement worthy of mention is nighttime. It’s a little less grueling. Looking at the CGM is significantly easier in the middle of the night than inserting a test strip into the PDM, poking a hole in Caleb’s toe and (often pop-eyed) trying to align that little half circle with the drop of blood. Some nights I am so out of it, with little depth perception, that I am dabbing a blood-free part of his toe waiting for it to register. I still have to do all that when there are out of range BGs, but the “just make sure” checks are much more seamless.
So here we are. We were reluctant to start. Underwhelmed when we began. We are starting to adapt.
I admit it – I resisted. Mostly because I could not bear to think of having to pierce Caleb’s skin for yet another reason. Finger sticks and pump insertions seemed like quite enough. Adding a CGM – another poke, another pain, another apparatus strapped to him – seemed too much to ask.
But it remained in the back of my mind always. Every time we waited for the blood drop to register – that little game of roulette we play ten to twelve times a day – what number would pop up? It’s part gamble.
Caleb and I talked about it. He bravely agreed to try it. I nonchalantly started the insurance process expecting it to be a long series of rejections and appeals. I was still reluctant and took every step with much more time than was necessary.
Then we went out to eat for grandma’s birthday. Caleb chose his favorite – pasta. I will not allow diabetes to make more choices for him than necessary. So even though I hadn’t dosed him for regular pasta in a long, long time, I gave it a try. I weighed his portion and bolused him reducing it by an amount I remembered working back when we weren’t eating new pastas.
We were off to a good start. Blood sugars were behaving nicely. But then shortly after he went to bed he yelled saying he felt low. He was 22 and he got there within minutes. We’ve never seen 22 before. More alarming was his reaction: “Mom, why does everything look so small?” “Mom, I feel like I’m gonna die.”
He was back in range quickly. But I don’t want him to ever experience that again. I couldn’t help but think CGM would help. So I stepped up the insurance process and within a week I got the call that he was approved.
Fast forward to the first insertion:
So how is it working?
I made the mistake of expecting miracles when Caleb started pumping. I didn’t make that mistake with CGM.
It is helpful. It is informative. I appreciate having to play roulette less. I felt a sense of relief immediately being able to watch Caleb’s blood sugar change rather than get slapped in the face every two hours or so.
But, like pumping, it’s far from perfect. Glucose readings must be verified before acting, so we have yet to reduce finger sticks. In fact, we’ve done more than ever to verify all the ups and downs within those ten to twelve times a day we traditionally check. It’s not always accurate. Sometimes it’s WAY off. But much of the time it is meaningful. And it’s true what everyone says: the trends are the real value, not necessarily the numbers. But, when it does work and work well, it’s actually pretty fabulous.
I really want the theory behind CGM to be the true reality of CGM. I want it to tell me what his sugar levels are 24 hours a day. It doesn’t. It doesn’t “catch” his lows and highs. It alerts us to the possibility or even likelihood of lows and highs – but sometimes not even that accurately because there is a lag between its readings and his actual blood sugar. Compound that issue with its readings being off maybe ten to twenty points and it’s easy to miss lows. So it can catch his highs and lows, but it doesn’t do that as a rule.
So far CGM has softened the extremes in Caleb’s blood sugar readings. It is a step forward in Caleb’s care regimen. I am glad to have it. It is, however, a much smaller step than I would have liked.
In all fairness though, we are still new to it, and I am optimistic that our learning curve will improve and the small step will become at least a little bit bigger.