Why we chose to #Loop | #WeAreNotWaiting #DIYAP

fullsizeoutput_22433Caleb and I were in the lobby of his dance studio and he started jumping up and down – not for dance but because he has just received an email announcing his acceptance to the Global Leadership program to which he applied. Up until that moment, I was pretty certain I had nothing to worry about, expecting he would not be awarded the scholarship. Not that I don’t have confidence is his abilities, I just assumed it was a competitive program (which it was) and a long shot (apparently not).

As Caleb is celebrating, I really want to be happy for him, but I’m overwhelmed with dread. I’m responsible for Caleb’s care overnight. I prioritize his need to sleep as a growing young man, and take any measures necessary to keep him safe with as little disturbance to his rest as possible. He’s been on sleepovers and overnight field trips, and although he’s gotten through them, they’ve been complicated. We were just in Italy for a family trip last summer and with irregular eating patterns, carb intense meals, and walking seven miles a day, diabetes management worked out reasonably well, but took a lot of extra attention, creative extended boluses, temp basals, and corrections overnight to keep him safe. All of which I did.

Caleb knows what to do in the waking hours of the day, and if he has any questions, I’m usually accessible to trouble-shoot, but overnights and vacations are my responsibility. He’s fourteen – vacation should be a vacation, not extra work and stress. He’s not immune to the anxiety that the variables of traveling bring, I just do my best to soften the burden as much as possible.

I couldn’t grasp how we were going to get him prepared to do it all within the next five months. All I could think of were the overnights – him exhausted after a long, active day, with carbohydrates releasing into his bloodstream willy nilly, an artificial process crudely, manually, and non-scientifically slapping insulin at him, with aftereffects of varying levels of activity unpredictably lowering his blood sugar – to me, it was somewhat horrifying.

I heard it over and over again – “He’ll be fine!” Yes, he’s a bright young man and very responsible about his diabetes – he’s never forgotten to bolus for a meal, for example – but that isn’t useful when you’re in a deep sleep, unresponsive to alarms blaring directly into your ear, and your blood sugar is 70 with a rapid drop alarm. I know the term “dead in bed,” and I can’t ignore it.

My goal for Caleb’s blood sugar on this trip was not optimal care. My goal was no need for emergency intervention: no severe hypoglycemia resulting in unconsciousness and no hypoglycemia resulting in vomiting. Okay, something a little tighter than that, but really, if that’s what it ended up being, it would have been fine. I just wanted Caleb to be safe.

We decided to try Loop because overwhelmingly what I read about a hybrid closed loop system was the safety and assurance it provided overnight and how users were able to sleep like never before.

Simplistically, this is what Loop does:

An app on Caleb’s phone performs a bit of magic. It communicates with his pump through a little computer (see the pic above) via bluetooth. The app connects with Dexcom, assesses his current blood sugar level, the direction of his blood sugar, the amount of carbohydrates he has on board and the amount of insulin he has on board predicts what his future blood sugar will be. Based upon those predictions and the defined target bg range, the Loop app will calculate a need for insulin dosing, either higher, lower or the same and change Caleb’s basal insulin to administer any adjustments. This evaluation is done every five minutes, and his basal is adjusted every five minutes. Caleb does nothing while the app, dexcom and his pump do the work.

If Loop predicts a low blood sugar three or four hours in the future, basal will be reduced or shut off. If Loop predicts a high blood sugar, basal is raised.

We’ve managed Caleb’s blood sugar manually in a similar, albeit much broader way – played with basal to address rising and dropping bgs that weren’t what we expected. We’ve used SuperBolus techniques, again, using basal to deal with the peaks and valleys of certain foods, like breakfast cereal. But what we’ve achieved manually doesn’t compare to what is attained by recalculating future bg and adjusting dosing every five minutes. My hope was that Loop could be the watchdog over Caleb while he slept, when I couldn’t be there, softening out the Dexcom line and keeping him safe.

Traveling to Another Country Alone as a Teen #Loop

fullsizeoutput_22356I wasted no time from the day Caleb learned he was awarded a scholarship to tour Italy for 12 days. He would be traveling with strangers – nineteen other students from all over the country who were also awarded scholarships, as well as the touring company’s staff and chaperones. The clock was counting down and I had a little more than five months to get ready.

This is something for which I never imagined I would need to prepare. For years I had been focused on the event of leaving for college as the ultimate deadline to pass over complete responsibility to Caleb for his diabetes care. This trip accelerated that timeline by four years.

We had already changed insulins and seen the elimination of some erratic results.

Other key strategies employed:

– use of a travel scale

– an increased use and therefore knowledge of carb factors

– use of an instragram account to post pictures of meals and get opinions on carb counts

– using Dexcom G5 CGM, ensuring transmitter was not about to expire and a nice new fresh one was inserted at the beginning of this adventure

– reinstating Nightscout

– teaching Caleb to insert Dexcom by himself

– acquiring a powerful battery charger

– ensuring we had an international data plan, and

– deploying Loop

All of the above were important and useful, but Loop was the most impactful change we made. In response to my call for help, Alicia shared her experiences with OpenAPS and Loop and pointed me in the right direction to find out more. I’d been actively following DIY APS as Dana graciously shared her experiences and knowhow with the world. It all seemed overly technical and complicated, and Caleb wanted nothing to do with tubing, so I remained a spectator up until this point.

Understanding the benefits that a hybrid closed loop system provided, Caleb became open to tubing. Relatively quickly, I was able to secure the supplies I needed and we got started. The learning curve was steep, and we faltered many times. But the payoff was big: a system helping me look over Caleb on another continent even when he slept.

 

 

SaveSave

#Dexcom CLARITY | #Diabetes Management App

Dexcom CLARITYWith 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.
Upload Dexcom CLARITYYou 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 Summary Low Trend Dexcom CLARITYDexcom 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.

#DexCom G5 Mobile CGM Approved

DexCom G5

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.

Forgetting Diabetes | Impact of Dexcom G4 and CGM in the Cloud

IMG_9106Minimizing 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.

FDA Approves #Dexcom G4 Platinum #CGM System with #Share

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.

FDA Approves #Dexcom Software with Artificial Pancreas Algorithm

Screen Shot 2014-11-06 at 2.01.00 PMDexcom 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.

 

#Nightscout | The New Rig #WeAreNotWaiting #CGMinTheCloud

IMG_7213The Grid-It works well for the “rig” (the dexcom and uploader combination that feeds the data to the cloud). It fits precisely in Cal’s CMC Urban Day pack. There is some vulnerability to the DexCom receiver’s usb port. To avoid damage, it’s important to keep the connection of the cable to the receiver immobile and intact. The Grid-It does that well.

There is a 3D printable case developed by two men who are members of the CGM in the Cloud Facebook group. The case holds the Moto G, the DexCom receiver and a special cable very snugly to limit any movement. You can either buy the case from them or download the file for free to print a case yourself, if you prefer. They also offer a DexCom only case which keeps the cable secure if you are using a different uploader but still want added strength to the DexCom usb connection.

Here is their video which shows how you put the DexCom/Moto rig together:

I got our case that you see pictured here through a local printer I found on 3D Hubs. The case was $24 and the cable was $26. IMG_7218Everything is snug. Very snug. I’m not sure I’ll ever be taking the receiver out of this case. I am getting used to taking the phone in and out of it to charge. It’s a tighter fit than what is shown on the video. Could be due to the printer, speed of printing or some other 3D print variable I’m not familiar with that results in variability in the product. It’s not l light. So although it can be worn as a lanyard with a case, it might be a little uncomfortable, but people are doing it.

The people contributing to this project are simply amazing. Such heart and soul are being given freely to make the lives of people with diabetes better. An update to the NightScout website, called Brownie, was rolled out yesterday. It allows for a Care Portal where care decisions can be documented and shared easily. We started using it this morning. I’ll post more about it soon!

#Nightscout | The first two weeks #CGMinTheCloud #WeAreNotWaiting

I bought a Boost Mobile Moto G, a cable and a Grid it. With a good sale at Target, total cost was about $73. I spent a few hours following the Nightscout Project instructions, and we were up and running.

IMG_7040Initially, it’s like the first time you get CGM data. You can’t believe it’s right in front of your face and you keep looking at it (as if to confirm its reality) and soaking up the perpetual stream of easily accessed information. That novelty does wear off. We quickly got to an as-needed access basis.

With the rig packed in Caleb’s bag, I could watch his BG while at school using the school’s wifi. Then, Caleb had a Gymnastics lesson and with their free wifi, I could run my errands and keep mindful of his BG. It became clear that having access to this information when he’s at baseball practice and dance class (places without wifi) would certainly be beneficial. I added a data plan via Ting for about $9 a month and gained continuous access to Nightscout.

We aren’t really doing anything differently, but Nightscout has enhanced our ability to manage diabetes in some subtle, yet meaningful ways:

– Caleb’s middle school schedule is jam-packed. Clearcut breaks for daily BG checks don’t exist like they did in elementary school. He and I being connected during the day via Nightscout allows flexibility for him to check his blood sugar when it’s convenient for him. If I haven’t heard from him by 9:15 – when he changes periods – rather than strum my fingers in anticipation and wonder, I just take a peek at Nightscout and stop wondering. Caleb can focus a little more on school and a little less about when exactly he needs to check his bg.

IMG_7197– Caleb is active. Gymnastics, baseball, tap, jazz, ballet, swimming, trampoline – they all have different levels of intensity and each activity can vary in intensity from one day to the next. It’s often just a guess about how to compensate carbs or insulin to mitigate.. We don’t always (if ever) guess correctly, so there are adjustments along the way. By watching remotely, I can be prepared to help him. I know if I can take my time with my errands/chores/shuttle service. I know if I should come back prepared with a cupcake for the impending low that 45 minutes of intense tapping just caused, or whip out his PDM to nonchalantly infuse some insulin because they decided to sit and review the baseball rulebook rather than run bases at practice.

– When he checks in with me, I am more prepared and he doesn’t have to spend time giving me information. We are already on the same page and get right to business, so he’s spending less time away from whatever he’s doing.

Overall, there is an added peace. Caleb is less distracted because he knows someone else it watching. Rather than wondering if that light-headedness is because of playing flute for an hour or if his BG is dropping, he is more likely to just keep playing. He does not seem as preoccupied about what his blood sugar might be. Even though he has DexCom in his pocket with him to alert him, there’s something comforting about knowing the responsibility isn’t all on him. Knowing that there is a safety net lets us all relax our shoulders a bit and focus more on life and less on diabetes.

Pictured above : Nightscout on my phone’s home screen. I see Caleb’s numbers as easily as accessing any app. 

Related posts: Nightscout | Getting Started

More to come on Nightscout including: Impact on Self-Care Development, Nightscout at School, Bumps Along the Way, The New Rig, Pebble Watch.