Caleb joined me on the most recent edition of DSMA Live: ‘Rents, only this version wasn’t live. In our first prerecorded show, Caleb and I talk about his diabetes tools and how his role in his care has changed over the nine years with which he’s been living with type 1 diabetes.
I hope you enjoy the show, and thanks for listening!
You can listen here.
The first Diabetes Podcast Week kicks off on February 1. I will be taking part as cohost of DSMA Live: ‘Rents.
Since August of 2012, Bennet Dunlap and I have been hosting ‘Rents, interviewing fellow bloggers, medical professionals, diabetes device executives, people living with and caring for people with diabetes, to name just a few. We’ve covered topics from Nightscout, The Artificial Pancreas, Spare a Rose and so much more. We’ll be airing our 75th episode live on February 1.
Our DPodcastWeek show will feature fellow Podcaster, Christopher Snider, and we’ll be talking about Diabetes Secrets. He hope you’ll join us live at 1PM EST, when we’ll 
be happy to accept your calls.
Please check out all the participants of DPodcastWeek and consider supporting the Spare a Rose Campaign. Buy one or two less roses (or skip them altogether) and donate that money to Life for Child and bring life saving insulin to children in need. For more information, please visit IDF, or listen to our podcast with Kerri Sparling mentioned above. Donations will be accepted started on February 1, when DPodcastWeek kicks off!
For a complete listing of all DSMA Live: ‘Rents episodes, please subscribe on iTunes!
…I don’t have it.
I’ve been working hard towards learning it though experience for nearly nine years, or 3,200 trials and lots more errors. I’ve searched and asked many questions regarding it, but no clear direction has been discovered.
Overnight care is the final ugly beast of diabetes that wedges itself between Caleb and his full autonomy. There are other things that he doesn’t do – he hasn’t changed a Dexcom sensor by himself, he doesn’t call customer service when there are issues, he doesn’t manage basal program or sensitivity adjustments independently – but these are things I know he can learn and don’t present imminent danger. This overnight thing is different.
Sleepovers and extended field trips – these include periods of sleeping. Caleb is on the ball when he is awake. When he is asleep, well, he’s asleep and does it for numerous hours at a time. Diabetes works in 2 or 3 hour cycles. Sleeping in increments of 2 or 3 hours or even 4 hours is not healthy. I haven’t been able to balance these opposing needs after more than 3,000 attempts.
This is not to say that every night for the past nine years I’ve been up actively managing his blood sugar every 2 or 3 hours. Particularly with the use of Dexcom G4 Platinum, there have been a number of nights when I wake to just check the CGM number and go back to sleep until morning. But there has not been a single night that I have slept through uninterrupted. Over the past year I was lured into a feeling of safety because it was more the norm than exception that I could just do that eyeball thing at 1 or 2 am and all would be well. These past couple of months have rattled me back into the fear of how ugly overnights can be – highs that don’t correct and lows that won’t rise.
This isn’t new. It’s not pleasant, but I can handle it – or handle it well enough.
I don’t know the best way to prepare Caleb for these nights. The ones after long days of varying levels of activity that show up in overnight lows to an extent you cannot reasonably predict. The ones after uncommon and fatty foods are consumed in quantities that vary from the usual routine that release seemingly never-ending gushers of glucose into his bloodstream.
We’ve been able to normalize so many things. Special trips are the hardest to deal with and present the biggest danger because there are so many variables, yet are the times when he should be able to stretch his wings and leap and fly and learn from his mistakes.
It’s the fear of the magnitude of the mistake that has me on edge.
How do you manage overnights?
This is not new, although it’s new to me. As soon as I saw Meri post about it, I got this set up on my phone and Caleb’s phone.
Caleb has just about every form of medical ID there is. Caleb is not consistently compliant with wearing any of them. I know – it’s important. I can’t think of many times when he is not with people who are acutely aware of the fact that he is T1D, but there are times where the awareness is more general, and there’s the fact that he has the peanut allergy thing as well, not to mention if we crash and are all unconscious. He’s aging as a middle schooler; high school is just around the corner. He’ll continue to become more and more independent, so he’s got to become more compliant…
Caleb’s phone is with him always. The iOS health app allows for you to set up an emergency medical ID page that is accessible even if your phone is locked (there is the option to disallow) and first responders are becoming more and more aware of this. In addition to checking for bracelets and necklaces, they are checking phones.
Setting this up allows for you to be detailed about medical conditions and treatment – things that don’t always fit very well on a jewelry charm – and the ability to directly call emergency contacts listed.
For more information and instruction check here and here, and also note the mention of weighing the risk of privacy.
With the announcement of G5, Dexcom CLARITY reporting was introduced and I completely overlooked it. I assumed the enhanced reporting wouldn’t be available until I had the handy dandy new G5 transmitter in my hands.
I was looking for the new G5 app in the App Store, saw Dexcom CLARITY, downloaded it, logged in, got nothing, thought it didn’t apply to me, moved on.
Then I asked about the G5 mobile app in a TuD conversation and my eyes were opened!! I see now that Diabetes Mine caught it and reported on in in their original newsflash.
You can download this application on your computer now, and it’s Mac compatible – HUGE!!!!. Download data from your receiver and, just like that, a new world of reporting is open to you!
Go to your phone (iOS only right now), download the app, sign in to your account and a PDF report is generated. You can also  generate a code to share info with others – specifically medical professionals. They can enter the code as a healthcare professional and view all your reporting, including summaries, trends, etc. Here is a USER GUIDE with tons of more detail.
I find this reporting so much more intuitive than the reports from Dexcom Studio. I loved having all the data and reporting that Dexcom Studio provided, but found myself using only the one hourly stats graph, and only going to the trouble (finding a PC) of getting it just prior to an endo appointment.
Dexcom CLARITY has a more streamlined feel and isolates data interactively for you right before your eyes. There’s less to manually sift through, but still all the data there and presented in summary or detailed format at your choosing. For example, it notes a trend of lows for Caleb after dinner – something I was aware of, but seeing it in front of me like that really makes me focus. This seems like friendly reporting that can be used with little effort, which means it has a greater likelihood of actually being used.
It’s something we did early on with family, when Caleb was four years old and newly diagnosed. It proved to be an overly stressful situation. Invites were few and then non-existent.
Eight years later, Caleb is a tween in middle school and is invited for the first time ever to a friend’s house for a birthday party sleepover.
As with other milestones in his diabetes care, I took the cue from Caleb. He wanted to go. He developed a close group of friends in his new school and was excited about the party. Most notably, he did not even mention diabetes.
It’s often the first thing he thinks of, and a factor in choosing whether or not to do something. I see it in his face as the questions form: “who will be there, what kind of food will there be, how will I know if it has peanuts, how will I count carbs, what if I’m high, what if I’m low, what is this event about anyway? oh, who cares, it’s too much trouble, no thank you.”
This time the only question he had was, “Can I go, PLEEEEEEEZE?!?!?!?”
So he went.
There were a mountain of variables complicating blood sugar management, and by “complicating” I mean “bringing hell to earth”. He went to the party straight from a baseball game. Games vary in intensity and there is often some kind of blood sugar clean up needed on the other side. He arrived to ginormo pieces of ice cream cake – he was a late arrival because of the game and they were kind enough to hold off so he could be included. I’m not kidding when I say these pieces of cake were huge. Caleb often sends pictures of food with his hand in it as a point of reference for carb counting. His hand was dwarfed by the size of the piece of cake. And did I mention it was ice cream? Â “Happy birthday to yous” transitioned to an intense and seemingly never-ending match of manhunt. Movies, snacks, chatting and at some point in the wee hours boys were starting to fall asleep.
Blood sugars were all over the map. Gus, juice boxes, sugar tabs, correction boluses, extended boluses – they were all in play. There was a period of about 45 minutes where Caleb and I were texting each other while everyone else was asleep because we needed to be sure he recovered from a low and was safe to sleep.
It was a nuisance and it was disruptive, but Caleb did not complain once. He rolled with it. He was responsible and attentive to his diabetes, but he did not worry about it. He was in communication with me, but also made decisions on his own. Not all of them worked out, but he took corrective action as he needed.
All I could think of the next morning was what a mess his bgs were and how tired he must be. When I picked him up, all he had to say was what a great time he had, and filled me in on a litany of details of tween-boy, fun activities.
Two months later, he’s invited to his cousin’s new home for a sleepover with his brother and sister. Variables are fewer and blood sugars are much more cooperative. Caleb, who never ever wakes up to Dexcom alerts, blood sugar checks, or screaming sirens in his ear, set an alarm on his phone to wake and check at 2am. And he did! Bg was a magical 150 and it’s right back to sleep for him, nothing else to talk about until morning.
Sleepovers with type 1 diabetes – it seemed like the one “thing” we hadn’t yet dealt with and it was a gloomy cloud hanging over me, pulling at me, giving me angst. Although I’m not worry-free about the prospect of future sleepovers, Caleb has shown me he can be responsible and do what is needed to fit diabetes, the thing he can’t leave behind, into the fun he doesn’t want to miss.
The next generation of DexCom has been approved and is expected to begin shipping in late September. With this system, the need for a dedicated receiver will be eliminated if you use a compatible mobile device. One less thing to carry. Receivers are still a part of the system, but now they are optional.
What’s equally exciting is the enhanced app that will be used with G5. Alerts and the ability to log events right in the app sounds like we may finally have meaningful reports to help us best use all this information for better diabetes management.
More photos and information at dexcom.com.
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 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, Â 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.Â
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.
We’ve been using CGM in the cloud in the form of Nightscout since September. Last week we started using the new Dexcom Share receiver.
What Dexcom Share is:
– It’s easy. There is really no need to read instructions. If you know how to pair any bluetooth device on your phone, you know how to connect Dexcom Share. I downloaded the proper apps on Caleb’s phone and my phone. I already had the account set up. I waited for the two hour start up period and we were live with Share. (Note: Share is currently only compatible with an iPhone or iPod).
It’s light! One receiver and one phone that Caleb carries anyway. No extra things to carry or charge or connect.
– It’s basic. Dexcom Share is very simple: you can see the receiver’s information on your iPhone. It doesn’t matter where the receiver is. If the receiver is in range to the user’s iPhone, the cgm data is pushed to the cloud and anyone who has been invited to see the data, can, no matter where they are. A user can Share data with up to five people.
– The alarms are helpful. Just like a Dexcom receiver, you can tailor the alerts you get: low, urgent low, high and a new one: no data. I have low set to “Baby Cry.” If I still had babies in the house, I probably wouldn’t find it as cute as I do.
What Nightscout is, that Dexcom Share is not:
– An active communication tool. The Nightscout Care Portal allows a user to post blood sugars, treatments, meals and any other notes within the graph. It maintains a log of all that activity. This is a good means to communicate with the school nurse while simultaneously building a database of actions. At any time a peek at the Nightscout graph shows calibration dots and dots of actions so everyone is easily fully informed.
– A blood sugar status a glance away. Nightscout allows access to cgm data from almost anywhere – a Pebble watch, any computer screen or web browser regardless of what mobile device you use, an old iPhone dedicated to the “clock” version. Access to the graph is unlimited.
– Predictive. Nightscout has a cone of confidence – the cgm graph extends beyond current data showing a possible rage of future blood sugars based upon the recent trend.
– A view behind the ??? and hour glass and start up pie. With the addition of raw data access, Nightscout brought a whole new pool of information to users. No more black out periods, although this information should be used with great caution. Read more about it here.
The Nightscout Project is an ever-evolving development of improved access and use of CGM data. Because we are already iPhone users, using Share is simple and the relief of the rig makes sense for us right now. We will continue to incorporate Nightscout into Caleb’s diabetes management as it makes sense and we will continue to watch for developments as The Nightscout Project Team continues to push the envelope making access to these improvements possible for so many. Their work is revolutionary.
You may have seen these sets around the community in recent weeks. If you’ve missed out on other giveaways, you still have a chance. Lots of great resources targeted toward children with diabetes are included. The Coco books are targeted toward the younger child, but have meaningful messages for all ages. The ESPN books are targeted to a teen audience.
If you’re interested, use the below linkto enter! Good luck and act fast! This giveaway ends this Sunday!
THIS CONTEST IS COMPLETE! WINNERS HAVE BEEN NOTIFIED VIA EMAIL. THANK YOU SO MUCH FOR ENTERING AND CONGRATS TO THE WINNERS! Thanks also to Lilly Diabetes and Disney for making this possible!
Updated Feb 6 to state: shipments made within the contiguous US only.
WHAT’S IN THE BAG?
(click on the photo to enlarge)
This is Caleb... 