Stories of Caleb and living with type 1 diabetes.
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.
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.
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, 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.
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.
Fantastic news announced by Dexcom today. Cloud information has been approved for the G4 system. New receivers will be available soon – see below for details.
As posted at MarketWatch
SAN DIEGO, Jan 26, 2015 (BUSINESS WIRE) — DexCom, Inc., DXCM, -0.29% a leader in continuous glucose monitoring (CGM) for patients with diabetes, announced today that it has received U.S. Food and Drug Administration (FDA) approval for its Dexcom G4® PLATINUM Continuous Glucose Monitoring System with Share. The Dexcom Share receiver uses a secure wireless connection via Bluetooth Low Energy (BLE) between a patient’s receiver and an app on the patient’s smartphone to transmit glucose information to apps on the mobile devices of up to five designated recipients, or “followers,” without the need for a dedicated docking cradle. These followers can remotely monitor a patient’s glucose information and receive alert notifications from almost anywhere, initially via their Apple® iPhone® or iPod® touch and in the future on Android devices, giving them peace of mind and reassurance when they are apart. The “Share” and “Follower” apps will be available on the Apple App Store at no charge.
“The Dexcom Share receiver represents a significant step forward for our company and our mobile strategy, but more importantly, it will provide a huge improvement for people managing their diabetes and for those parents and caregivers who help them each and every day,” said Kevin Sayer, President and Chief Executive Officer of Dexcom. “The FDA understands the importance of this type of innovation and the need to regulate it appropriately, and we could not be more pleased with the speed at which they reviewed and approved this important innovation.”
About Dexcom G4 Platinum with Share:
The Share receiver is anticipated to ship to new patients in early March 2015.
All patients who purchased a Share cradle will receive a free upgrade to the Share receiver.
All purchasers of a G4 Platinum receiver from January 1, 2015, until the Share receiver is shipped, will receive a free upgrade to the Share receiver.
There will be a low cost cash upgrade to the Share receiver for those patients who are still under warranty with their existing receiver.
The Share receiver will be compatible with future generation Dexcom sensor systems.
About the De Novo Classification Process:
The FDA reviewed the mobile app software used with the Dexcom Share receiver (both the “Share” app on the patient’s phone and the “Follow” app on the caregiver’s phone) through its de novo classification process, a regulatory pathway for low- to moderate-risk medical devices that are novel and not substantially equivalent to any legally marketed device. The FDA has specifically classified the apps which communicate with the Share receiver as a secondary display device and has noted that similar devices which provide only secondary display for passive monitoring, but which do not replace the primary real-time display device, will be subject to the same classification, subject to compliance with certain special controls established by the Agency with respect to this secondary display. This means that devices which comply with appropriate FDA regulations, including the special controls, will not be required to submit a premarket notification to the FDA before marketing a secondary display device for continuous glucose monitoring. The Share receiver was still evaluated as a Class III medical device.
Management will hold a conference call to review this approval starting at 9:00 a.m. (Eastern Time) on Monday, January 26, 2015. The conference call will be concurrently webcast. The link to the webcast will be available on the Dexcom website at http://www.dexcom.com by navigating to “Our Company,” then “Investor Relations,” and then “Events and Webcasts,” and will be archived there for future reference.
My number one reservation about starting Nightscout was the size and weight of the rig. It’s a definite price to pay. It’s not ideal, but Caleb’s been able to manage, and the benefits are currently worth the price.
My next concern was taking a step backward in the progress we had made in Caleb’s self-care.
Since he was in preschool, Caleb has always had some level of responsibility in his care, and it has advanced both organically and with careful planning each year. In third grade, we (his school nurse at the time, Caleb and I) started to take steps to prepare him for middle school. We targeted specific milestones for each of the next three years. Caleb was caring for himself as I expected a middle schooler would by the beginning of his last year in elementary school.
Given this success in autonomy, and on the verge of starting middle school, I didn’t want to compromise his progress. If I started watching his bgs, would the torch come back to me? That was absolutely not the goal. Why would we need remote access to his CGM data if he was now running the show? I didn’t have the answers to these questions, but I started seeing successes with the Nightscout Project, got over the hurdle of the rig size, and figured with a limited financial investment, why not give it a try.
The role Nighscout played in Caleb’s autonomy was not one I anticipated. Knowing that he was no longer “alone” when I dropped him off somewhere, gave him security. This increased the opportunities to be places by himself because he was comfortable. The more he did this and saw that he could care for himself by himself, the more confidence he gained. Increased confidence added more security, which led to more confidence, and before we knew it, things had changed dramatically.
We had gone from discussing a careful plan of “what ifs” each time he was dropped somewhere, to no longer even thinking about it. This was a change in Caleb. Where he was once anxious, he was now assured. School days became easier as well. A middle school schedule is pretty hectic; he never seems to have a spare moment. He has greater flexibility to go throughout his day as he pleases, without being a slave to a diabetes care schedule. We probably would have gotten to that point because of Dexcom alone, but Nightscout got us there immediately upon starting school.
Does Caleb care for himself entirely independently? I’d say he does 90% of the work when he and I are apart. When he’s home, we’re definitely a team. He makes decisions, I make decisions, we make decisions together. When he’s at school or elsewhere, he’s in the driver’s seat. We consult throughout the day if needed. There are times when I see something on Nightscout that he hasn’t noticed yet and I will prompt him. I don’t feel like I’ve taken back control though. I feel like I’m helping him at a level that is appropriate for someone his age. He’s continued to move forward in his level of self-care. He hasn’t taken any steps back, which was my concern.
The biggest issue we were having when we starting using Nightscout, was Caleb’s self-confidence in his diabetes care. I knew he was capable, he wasn’t as sure. Nightscout propelled his confidence forward, the exact opposite outcome I had anticipated.
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Hanging his “robotic pancreas” from his guitar strap, Adam Lasher auditions for American Idol. I haven’t watched in years. This is an incentive to start again.
Dexcom announced today the availability of updated software that will improve the accuracy of the system.
We are Nightscout users and use two receivers. One is approved only for adult use and the other is approved for pediatric use. Because this software update is approved for users 18 years and older, the pediatric receiver can not be updated with this new software.
We will therefore be using both receivers, each with a different algorithm. We should be in a good position to compare and assess the improvement in accuracy, even though we’d prefer just to update both with the new software.
If you are planning to update, please note that the update will require a restart of the sensor and will clear out all historical data. So download your data first if you want to keep it. Also, the update cannot be done from a Mac.
Visit Dexcom to access the software update.
Here’s the press release:
New Dexcom software achieves critical milestone in measured accuracy for continuous glucose monitoring
SAN DIEGO, Nov 06, 2014 (BUSINESS WIRE) — Dexcom, Inc., DXCM, +0.45% a leader in continuous glucose monitoring (CGM), announced today that the U.S. Food and Drug Administration (FDA) has approved new software for the Dexcom G4® PLATINUM CGM. The new Software 505 features the same advanced algorithm as used in artificial pancreas research around the world. The software will impact the performance of the Dexcom G4 PLATINUM, already considered the most accurate CGM system on the market today. The software will be made available free of charge to adult patients using the Dexcom G4 PLATINUM.
“Patients will be able to go online and download the software, or they will receive the software preloaded onto their Dexcom receiver with new orders,” said Terrence Gregg, CEO, Dexcom. “This latest software enhancement to the Dexcom G4 Platinum will make the performance level comparable to episodic blood glucose finger sticks; this is a significant step in the evolution of CGM becoming the standard-of-care over blood glucose meters for people with diabetes.”
Now, Dexcom G4 PLATINUM is the first and only CGM system on the market with a single-digit MARD (Mean Absolute Relative Difference) measurement, below 10 percent. MARD is the standard industry measurement of accuracy, where a lower MARD reflects higher accuracy. With the new software, healthcare providers, patients and caregivers will now have glucose readings from a sensor that are closest yet to lab accuracy. The combination of the new software with the CGM advantages of real-time trends, speed and direction provides a complete picture of the patient’s glucose activity.
Diabetes affects 29.1 million Americans and is the 7th leading cause of death in the United States.3 With diabetes, the body cannot produce or use the hormone insulin effectively, causing a buildup of glucose, or sugar, in the blood. It is estimated that approximately 79 million Americans over the age of 20 are at risk for developing diabetes, largely due to obesity, physical inactivity and poor diet.2 People with diabetes who take insulin must monitor their blood glucose levels frequently. Uncontrolled glucose can cause health complications and even death.
Here are some excerpts from Dexcom’s most recent earnings call as posted on SeekingAlpha.com that I found interesting. These are specific to Dexcom’s cloud based platforms and the elimination of regular fingersticking, both areas of focus in development for G5 and G6 and having pending applications to the FDA. There was also reference to studies showing the accuracy of G4 as superior to Enlite, particularly in hypoglycemia. There was much more to the call including discussion of the financial impact of pediatric approval as well as Terry Gregg’s future with Dexcom, and I invite you to read the transcript in full at SeekingAlpha.com.
Terry Gregg, CEO
…our G4 PLATINUM sensor is significantly more accurate than Medtronic’s Enlite sensor. At this time most investors are aware of the work by Boston University where Dr. Steven Russell shared comparative data from patients simultaneously wearing the G4 PLATINUM and Medtronic’s Enlite with reported MARD of 10.8% for the G4 PLATINUM and 17.9% for the Enlite.
From the question and answer section:
…And then last question is you mentioned that on the progress with G5 and G6 anything in particular on the timing of those or when we might see a regulatory submission or studies? Thanks.
Kevin Sayer – President and Chief Operating Officer
We run early phase studies on our technologies before we go to publication we are running early phase studies on several different versions of these products in the pipeline now. But as far as timing when I need to get share approved first and that is really our first foray into the Gen5 market that will be our first cloud-based mobile application where you can share your data with others.
I think once we get that approval that will trigger a lot of efforts and a lot of thoughts on our partners to how we think accelerate things and how fast we can go. So now those product lines are both in pretty heavy development right now.
…can you separate out the specifics of G5 like what exactly will be the benefit G5 over G4 and then the same for G6?
Kevin Sayer, President and COO
G5 is going to be focused largely on connectivity, mobility and convenience. And it will come out more than likely as a series of launches rather than one big launch with the end goal of G5 being a simplified application system at the end, combined with connectivity to a phone in addition to be in connected to your receiver and cloud-based data. We’ll go there in a series of steps.
That system will use the Gen4 sensors currently configure but with new algorithms that we’ve developed over the course of the past few years that will improve accuracy and reliability.
With respect to the Gen6 system that’s our first step towards doing a couple of three things, culminating some of the calibrations, getting the replacement claim or dosing claim so you can dose insulin and then ultimately eliminating finger sticks altogether.
This is Caleb... 