~ originally published by insulinpumps.ca, October ‘18
My daughter was diagnosed with Type 1 Diabetes 5 years ago. She was 6 years old at the time. All she knew about T1D was what she saw or heard from me. I’ve been managing a life with Type 1 for 20 years. Before she was diagnosed, I used to hear whispers of new treatments, tools and potential cures coming down the pipe, but always with the tagline of ‘5–10 years from now’. They were right. That 5 years turned to 10, which quickly turned to 15 and now 20, yet — after millions of hours and dollars invested in research and development, there’s been nothing new brought to market. I had basically become numb to ‘the pipeline’ and had completely given up on ‘the cure’, until I tripped over Nightscout while scrolling through my newsfeed on Facebook a few years ago.
A fellow T1D parent (PWD) posted a photo of ‘date night’ with her daughter’s blood sugars displayed on her watch. My jaw dropped. I was dumbfounded and for the first time in my adult life, I was speechless. My fingers were tapping twice as fast as my brain could form complete thoughts, desperate to find out HOW?! Was this for real? Were these real-time blood sugar results? How did she achieve this magical feat? I had to know! She replied almost immediately and with the same level of excitement about this new technological advancement in Type 1 management. Could it get any better? Well… YES! As it turned out, this was not an the typical hard-to-afford option provided by a multi-million dollar corporation, but, instead, a labour of love donated by a small group of parents — FOR FREE — who, like me, were tired of waiting.
In early 2013, John Costik kicked off the #wearenotwaiting movement, coined by Lane Desbourough (Bigfoot Biomedical) and Howard Look (Tidepool). John’s partnership with Lane led to the creation of Nightscout, with assistance from Ross Naylor. Soon after, Jason Calabrese, Jason Adams, and Toby Canning got on board and started the CGM in the Cloud Facebook group. When I joined the group in 2014, I was the 1,329th member. Back then, the information provided was code-heavy, specific to the United States and difficult to navigate, at times, when trying to translate the details to Canadian values, providers, hardware, software, etc. There were glitches and the system required frequent, frustrating troubleshooting.
Today, there are 27,048 members in that group, with a worldwide community of 55,000 members covering 33 countries outside of North America (Nightscout Foundation) that help to customize documentation and offer support for each country. The support is unmatched and instantaneous, at any hour, on any day of the week. The system has evolved with each passing year and become more accurate and less complex. Thousands of T1Ds and their caregivers are able to monitor blood sugars at a glance, helping to increase time-in-range and decrease A1Cs.
Nightscout allows for real time access to both Dexcom (G4, G5, G6) and Medtronic (Enlite) CGMs from web browsers via smartphones, computers, tablets, and smartwatches with the goal of improving and saving as many lives as possible, and reducing the burden of Type 1 Diabetes. G.A.M.E. C.H.A.N.G.E.R.
Nightscout has grown exponentially and continues to be developed, maintained, and supported by selfless volunteers from around the world. The goal of the project is to allow remote monitoring of a T1D’s glucose level using existing monitoring devices. Thanks to this movement, people like me no longer have to rely on government or ‘big pharma’ to:
step up and change the standard of diabetes care
fix old proprietary systems of big medical
offer us ownership of our own data
provide a tool that combines data (BGs, nutrition, insulin, and biometrics) to help us each individually unravel the unique mystery that is T1D
give us back our lives!
Perks to using Nightscout:
Nightscout allows me, as a parent, to live my life without the full weight of the fears and anxieties that come with a child’s diagnosis. I am able put distance between myself and my daughter, while still being aware of her blood sugars and any potential threats they may pose, so that she can enjoy her childhood while I proactively manage her T1 from afar to ensure her safety while she’s at school, at a friend’s house, participating in sports and enjoying her childhood.
Other family members are able to help us keep an eye on her through her website when we are unavailable (business meetings, school functions, etc.). Her teachers are able to project her Nightscout site on the board at school, which also helps her classmates to learn about and understand a day in the life of a T1. Some teachers have worn smartwatches and downloaded the apps to have her sugars show up on their wrist, allowing them the benefit of quicker reaction time in case of a low.
Overnight, I am able to check on her at a glance as opposed to having to physically get up and use her meter to check her blood sugars to ensure she stays in safe range while she sleeps.
The reports provide information that helps us to make adjustments to her pump settings and food choices to make sure she feels good and achieves optimal results and the online support from other T1s and PWDs is unmatched. T1 spans every time zone, so there is always a kind, understanding, helping hand awake and online to reply quickly and help troubleshoot any issues, which truly renews my faith in humanity.
Pitfalls to using Nightscout:
There is some varying cost to getting set up to send your data to the cloud. At a minimum, someone looking to become a ‘Nightscouter’ can expect to spend $100 on miscellaneous cables, cases and basic supplies. Depending on your insurance plan, CGM costs can be substantial for those who do not have coverage. There is a requirement for an android phone to upload BG info to the cloud and a data plan (wifi in most schools is not reliable).
There are also some potential technical difficulties:
· setup can take 30 minutes to several hours (you can save and return later) · data may go missing without warning · data may be absent, inaccurate, delayed · data systems can and will go offline making your system inoperable · you may void your CGM warranty · you may break something (or forget to take off your tech before swimming)
Nightsout (NS) vs. Dexcom Share:
NS was available and free long before Share came to market. In fact, the developers of Nightscout were integral to the expedited FDA approval of Share in the US, and therefore got Share to market much sooner than planned.
Having said that, NS is not an FDA-approved monitoring system.
NS was designed and provided by Parents and family members of T1Ds, whereas Share is developed and provided by highly regulated industry.
NS requires an android phone to upload data to the cloud. Share uses iPhone/iPod iOS.
NS can be used with all Dexcom transmitters AND medtronic Enlite CGMs. Share can only be used with Dexcom.
Share requires use of a receiver that also has to be plugged in, NS does not.
Both systems offer opportunities for Master (T1) and Followers (caregivers/remote monitoring), can communicate offline using Bluetooth and allow for alarms to be set.
NS requires DIY setup and some troubleshooting. Share is plug and play out of the box.
NS is mobile/portable. Share is not.
Nightscout has BG prediction with trend lines extending past current BG readings, Share does not.
NS has Care Portal which offers users additional features to enter detailed information (carb intake, treatments, etc).
NS can be accessed through various apps, as well as via direct link over internet using tablet, computer, smartphones, etc — virtually any device. Share is only available through iPhone app through sent invitation.
NS graphs are much more detailed, allowing for more information to be displayed/accessible at a glance (raw data, etc) and you can view historical information. Share is basic and restricted by colour scheme and limited data available for viewing.
There is no sensor “warm up” period/requirement or blackout periods (???) when using NS.
There’s probably more, but that’s what I know off the top. All things considered, the journey to better blood sugars for us includes Nightscout and we’ll never look back. It provides freedom for our daughter and peace of mind for us. I can travel, go to work, be away from her without feeling shut out. She can go to school, play sports, attend parties and I can monitor from the other side of the world, if need be, which is more comforting that words could ever express.
It’s truly amazing what one person, or small group of frustrated people can accomplish when motivated to make change. If you’re interested, start here…
Kristen Garland, RD, MAN, Pn1 dx June ‘98, pump and CGM user since ’03