Forgetting Diabetes | Impact of Dexcom and CGM in the Cloud

Minimizing Caleb’s disruption at school is paramount. Prioritizing this is less about restricting his classroom instruction, although that is an important right of his, but more about preserving his emotional health.

Every time Caleb has to perform a diabetes care task, it’s a reminder that he is different and that he has a burden from which those around him are free. It divides his attention from whatever is happening in his day, that those around him can give full attention. My goal is to minimize those disruptions, aka: reminders at the hope of avoiding burnout.

  • In first grade we minimized visits to the nurse’s office. He checked in class and the nurse came to him.
  • In third grade we removed the need for nurse supervision - he used a classroom phone to contact me when a care decision needed to be made.
  • In fourth grade we utilized the school wifi system to allow him to text with me for added discretion.
  • In sixth grade we introduced CGM in the Cloud.

In general, Caleb is more independent in his care. Where we used to have defined times to check in, now he checks in at his discretion.

There are even days when I don’t hear from him at all and the only diabetes task he has done at school is to bolus for lunch, and at that time, give Dexcom a look. On those days he’s had exactly one interruption to his day because of diabetes. Just one. It’s a taste of normalcy that struck me the first time it happened. It felt luxurious - like being pampered by not having to give this beast attention whenever it demanded it, which is something we’ve grown used to.

Because there are still beastly days, and you never really know when when they will be, we’re always on guard for it. So when the luxury days occur, they are relishable.

We’ve been able to eliminate the schedule because of Dexcom and CGM in the Cloud. We trust Dexcom. Caleb’s been using it for six years and the G4 has fantastic accuracy. We allow it to watch his blood sugar and let Caleb know when it needs attention. The addition of CGM in the Cloud means I also get alerts when Caleb’s blood sugar needs attention, no matter where he is.

We therefore think less about it. Neither of us wonder what might be happening. I’m not worried that he might be distracted and forgetting to address his blood sugar, Dexcom and Share2 are keeping watch for us.

We are allowed to forget about diabetes, even if it’s just for a little while, and it’s fantastic.

Caleb has used both the Nightscout and Dexcom Share2 CGM in the Cloud systems.

I am neither a doctor nor certified medical practitioner. How Caleb and I choose to manage his diabetes should not be taken as medical advice. Please consult with your doctor any treatment decisions.

This is Caleb…

4 Likes

I personally think your a little bit wrong in thinking a PWD with a CGM ever thinks less about his “Betes”. 20 years ago I was not focused on my BG most of the day but with new technological breakthroughs we have become intensely focused on our BG…It’s even called intensive insulin therapy…I can assure you that any Type1 with a A1c below 6.5 with a CGM and a pump is constantly thinking about his/her BG no mater if he looks at his CGM or not. I’m not saying diabetes is going to reduce a indaviduls success…just saying we adapt and learn how to juggle our Betes tasks along with our other chosen activity’s. I cannot shut out my thoughts about my BG it’s “chronic” I cannot get it out of my mind, and have really no idea when it’s going to stick it’s tongue out at me…It’s not a invited guest, it just shows up unannounced…:wink: We are strong and can deal with this and go to school, or do what ever we like…

1 Like

Hi, @JohnG! I completely agree with everything you’ve said! Yet, I’m absolutely certain that Caleb and I both have periods of forgetting about his blood sugar. I’m talking about hours - nothing longer than that - when it previously was a little more in the forefront of both our minds.

Caleb absolutely has intensive insulin therapy and he’s very responsible about not ignoring alerts or his feelings. After years of scheduled checks at 9:15, 11:45, 2:45, we now don’t have that and there are often days where he just cruises along. It’s a change in our specific routine, not one we specifically planned.

I’m glad that he’s allowed to give a little less attention to diabetes and still maintain a below 6 A1c. I’m thankful for the technology that has allowed for that.

1 Like

I think the longest period of time I’ve “forgotten” about my diabetes is about 3 hours, since 1978…

4 Likes

@JohnG: I think you need to consider a bit more deeply the psychological, intellectual, emotional, and developmental differences between an adult and a sixth-grader when pondering how each might be mentally dealing with the disease.

Based on my experience raising my own children, and my personal experience with diabetes, I have no doubt Caleb has completely forgotten/neglected his condition, and Mom has had to intervene, on many many occasions.

Not because he’s irresponsible. Rather, because he’s a kid, and running around the backyard for hours with a super-soaker and a bunch of friends can be quite distracting to someone with a single-digit age, or a tween.

I’m not saying a child will never forget about their diabetes, just saying that a CGM and a pump probably intensifies our awareness of our chronic BG condition. I raised two children while being completely insulin dependent and now have grandchildren. I have been in this diabetes game for a long time and have attended many local JDRF groups with young type1’s. The parents tend to be much much more stressed out than the kids.

I think a CGM will reduce the stress on the parent and the child…but I think in the long run it will intensify awareness (it was designed to increase BG awareness good or bad). Our CGM’s reward us with just as much good news as bad news.

IF, a CGM reduces severe hypos and/or hyperglycemic episodes, I say what stress there might have been added to the treatment regimen should be considered as the “necessary evil”. For parent, or for the kid. Stress is finding out your kid is in a diabetic coma…

1 Like

This is so very true. Our transition to pumping was just a few months after Caleb was diagnosed. He was four years old then. It absolutely intensified things. We knew that going in, but made that choice because we believe it provides better quality care. When we introduced Dexcom Seven Plus six years ago, I remember having feelings of information-overload and also wanting to toss that thing out the window a few times - as much as it helps when it’s accurate, it frustrates when it’s off.

The improvements in G4 and the supplement of Share have been impactful and have eased up the intensity. I’m confident G5 and beyond will result in continued improvements to quality of life, even if it’s in little increments.

1 Like

Ha! So true. I’m actually happy to see when Caleb can just enjoy super-soaking without worrying about the impact to his blood sugar. He’s spent a lot of time thinking about diabetes, forgetting for a little and just enjoying regular things can be a good thing. :smile:

1 Like

I think a good summary of this thread would be to say that Caleb, being a youngster probably “forgets” about his diabetes much more often than Mom knows and the new technology makes that even more likely and possibly less dangerous. As for Mom, the new technology has been a god send for her peace of mind, she has the ability to keep tabs on him without necessarily injecting herself into his life.

Thanks, @Wheelman!

Yes, I bet that’s the case for some users. Our situation is actually more the opposite. My worry has always been the numerous tasks required to manage Caleb’s blood sugar would burn him out, and I’ve tried to minimize them where possible. He actually does not forget his diabetes - ever really. He’s never missed a bolus or a fingerstick, ever, while at school over the past eight years.

I’m celebrating the fact that he’s allowed to let it go a little without consequence. He’s allowed to forget and so am I because we know there’s another team member looking in on him. If his blood sugar is ok, he just keeps going. It used to be he would check-in at least three times every single day whether his blood sugar was in range or not. Now when his blood sugar is in range, he gets to keep going without interruption. It’s a nice feeling.

I guess I should define what I mean when I say he “forgets”.
I’m not saying he misses a bolus or a BG check but that it’s not something in the front of his mind all the time. With the CGM and pump he has the option to allow his awareness to be focused on other things for a longer period of time than before without the danger of his BG going to a bad place. The tyranny of the beast is reduced a bit. :smile:
At least that’s how it’s been for me using a pump and CGM, although I’ve found the CGM isn’t always as accurate as I’d like. I use a Medtronic pump and Enlite sensor and don’t have any experience with how they compare to the Dexcom unit. As an adult I don’t have anyone keeping tabs on me so I don’t think I’d find the cloud interface useful but it would sure be nice to have the sensor data sent to my iPhone.

1 Like

Oh yes, yes, yes! You are spot on! I’m so sorry for misinterpreting! That is exactly the point.

My choice of words “forgetting” is unfortunate. I’ve confused matters greatly. :wink:

I don’t think I ever “forget” my diabetes even for a little while but I will say with all my gadgets I do get to enjoy a good sleep in and not have to worry about a low. With basal rates set correctly and CGM online I can and sometimes do sleep in until 10. The joys of no little children running around the house anymore. So i don’t forget about it but I do let my gadgets help me enjoy some well needed sleep in time.
When I first got my Dexcom I watched it all the time. It was crazy for awhile but now I just let it do it’s thing but still check my blood sugars every few hours especially when working. “Forget”, never but put on hold , yes for awhile!

1 Like

10AM?? :slight_smile: My bladder would never allow that much sleep time. :anguished:

1 Like

I’ve been surprised by the counter-intuitive reality that sometimes intensifying diabetes control efforts can lead to more freedom, metabolic tranquility, and peace of mind. I know we, as diabetics and parents of diabetics, try to negotiate the tension between diabetes requirements and simply living life. We often conclude that attending to our diabetes detracts from our quality of life. We see it as a “zero-sum” game, pay attention to diabetes and suffer less quality of life. I don’t think that’s true in the long run.

I’ve concluded that paying more attention to my diabetes treatments, even to the extent that some may consider it obsessive-compulsive (I would argue that point!), reduces stress, restores good BGs, and enhances quality of life. Stated another way, more effort produces less stress and more quality of life. Habit is our ally and can turn newly adopted “extra” tasks into ones done without much effort.

I think one of the keys for you, Lorraine, is that you’ve been able to keep Caleb’s BGs in range with a lot more sideways movement and less up and down volatility. Congrats on a job well done! More importantly you’re teaching Caleb some great techniques as he moves toward adulthood and autonomy.

As far as diabetes burnout goes, I think that nothing succeeds like success. As diabetics, we have no choice but to play the required BG game. Since we have no choice, it’s much more fun to succeed than fail. I know it’s not easy and I’m not perfect but I’d rather win than lose at any game!

I’m not sure I have ever worried about burnout but I was, uh, sort of a burnout when I was Dx’ed in 1984, as having started transitioning from Maiden/ Ozzy to Black Flag/ Metallica/ etc. I have always liked winning at diabetes and I win by engaging with non-D activities. My parents were very much “you run things, let us know if you need help” but how many 16 year olds ask their parents for help, unless their car blows up or they need money or whatever? When I was younger, I avoided D-straction by playing in rock bands and partying [my parents did not, of course, endorse the sort of extreme crap we did, but it was fun and most of us survived…] and now it’s more working out and middle-aged pursuits, charity events and going out on the town and stuff like that.

I think the kid/ parent dynamic can be different because the parents want to do everything but the kids sort of hold the keys to the kingdom, know the feelings that go with the numbers but maybe also perceive parental reactions to BG as “parent kid” dynamics as much as “kid vs. diabetes” dynamics? I am a pretty tight CGM checker but I look at it like having a mean dogabetes on a leash and I want to keep the leash short. The most recent Enlites are working very well for me and I probably don’t test as much as I used to but I like being engaged with it.

Something that I’ve been ranting about is looking for diabetes victories more than the stream of things to fix (#diseaseofvictory, I think I have like 4 or something?). Ted Williams hit .400 in 1941 and is a legend [that’s not, of course the only reason, I think his HOF speech is one of the greatest things ever to come out of sports…]. Maybe trying to “hit .400” or get 40% of your numbers “in range” might be a way to think about “winning”? If it’s too easy, maybe tighten your range? I find winning in diabetes and try to do more of it. I try to “win” every single test. Even if the numbers are off, I can kick a$$ by doing a good job fixing it. I don’t ever settle for a “little bit off” and always try to nudge things more towards normal if they are there. Even an experiment that blows up can provide good data that can help next time. I think kids, and really everyone, might benefit from this type of perspective more than hiding from diabetes.

1 Like

Or Mahvishnu Orchestra to Pixies via Mission of Burma in my case. Clearly we need a Badass T1 Guitar Slingers Group.

I guess “burnout” is the standard term but I think of it as Diabetic Claustrophobia, which can strike at any time. Particularly when high numbers (remember The High Numbers?) crop up for no apparent reason despite the fact that I’ve been working really hard and doing everything right and still… Or even worse, when the fing infusion set gets yanked out in the middle of the night and I apparently slept through the alarm (or it didn’t go off???) and the god* real estate is getting seriously scarce for those painful angled sets, turning into a bloody (literally) nightmare in fact, and I’m trying to fix it at 6 a.m. when I haven’t even had coffee yet and after 30 years I am SO. SICK. AND. TIRED. OF. DEALING. WITH. THIS…

And yes, recently I’ve been down in the opposite realm from what you’re describing. But we all have our own way of getting a grip, right? After all, we don’t have any choice. And yes, I want to kick its ■■■ for another 30 years, the same way I want to bear down and play that blistering organ/saxophone obligato in Peaches En Regalia at tempo the same way I learned to do when I was 16, one more time, despite how ridiculously awkward it is on the guitar fretboard. And I will do it, goddammit.

2 Likes

Beautifully written. Thank you for posting this.

[quote=“Lorraine, post:1, topic:46123”]
We are allowed to forget about diabetes, even if it’s just for a little while, and it’s fantastic.
[/quote] @JohnG - IMO, this sentence has to be read in the context presented, not in the context that I (or you) live in.

I was 19 when diagnosed, so I never had to be a CWD @ 4. I am not amazed at the CWD and their wonderful parents, but I am humbled.

2 Likes

what is

pppppppppppppppppp