This week's post is from Susan McGrath, who is mum to Devin and Max, wife to Peter. Max was diagnosed with Permanent Neonatal Diabetes, which is treated as type 1 diabetes, at three weeks old. The McGrath family use the Nightscout (or “CGM in the Cloud”) system to manage Max’s diabetes. Susan gives her experience of using Nightscout.
I connected with Susan through Kevin McMahon from Sugar Surfing and she has been helping me organise our Thriveabetes Sugar Surfing Workshop, which wouldn’t have been possible without her.
Nightscout, or CGM in the Cloud, was developed by parents of children with Type 1 Diabetes in 2014 and has continued to be developed, maintained, and supported by volunteers. Originally, Nightscout was a solution specifically for remote monitoring of a child’s blood sugar levels through a Dexcom G4 CGM data.
Nightscout is an open source software programme (this means that the original source code of the software is made freely available and may be redistributed and modified) and DIY project that allows real time access to a CGM data via a personal website, smartwatch, or an app and widgets available for smartphones.
NIGHTSCOUT, WHAT IT MEANS TO ME. BY SUSAN MCGRATH
Nightscout, what does it mean to me? Freedom? Peace of mind? Well, in one word, EVERYTHING. “A bit dramatic” I hear you say, but in all honesty, this is true.
Nightscout gives us Peace of mind.
You see, as I sit here and write my very first blog, my 5-year-old son, who has Permanent Neonatal Diabetes, is at his very first school play date without me. For most parents this is no big deal, but for a parent of a child with Type 1 Diabetes (or any form of insulin dependent diabetes) a solo play date can be the cause of immense worry and stress. I generally tend to stick with close family and friends, those who understand the enormity of caring for a child who is insulin dependent. But when a school pal’s parent asks if Max would like to head over to their house after school, a whole new world of worry emerges. What if there’s food? Or shock horror, what if there are sweets? What if he goes low? What if he goes really low? The safest bet is to decline politely and say “Maybe another day?”
Of course, I could go with him but do I really want to be accompanying him on all his play dates for the rest of his school days? I know he doesn’t want it. And let’s face it neither of these scenarios are really the best option for Max or for me. As much as I’d like to wrap him up in cotton wool and be close by to protect him for all that diabetes will throw at him, this is not really a realistic future plan.
So, this is where Nightscout comes in. After a quick debrief to the Mum, making sure her phone is on and Lucozade at the ready I’ve left them to it. If he goes too high I’ll pop over and correct, if he trends low I’ll make a phone call for a quick sip of Lucozade and we can all get on with our day. As I sit here, I’m looking at a beautiful 5.7 mmol/l and a lovely steady line. I’m happy, content and enjoying a quiet coffee and Max is happy and content and enjoying playing with his brother and his friend.
Nightscout gives us Freedom.
Freedom for Max, freedom from me being constantly at him, checking his pump trying to preempt highs or lows. It gives him freedom to play and do his own thing like any kid his age without Mammy standing behind him all the time, anxious to check his pump, check his bloods in case that trampoline session has caused a drop, or that the extra bit of cake at a party is going to send him through the roof.
Instead I can watch from the wings. This is pure freedom for him and for me. You see, Max was diagnosed as a TINY 3-week-old baby who was in severe DKA. He has a very rare form of genetic Diabetes, called Permanent Neonatal Diabetes (PND), around 1: 400,000 babies are born with this condition worldwide. We were told that he was the first baby to be born with it in Ireland. There are many different gene mutations of PND, with different forms of treatments, but for Max, his symptoms and treatment are the exact same as Type 1 Diabetes. Apart from those first 3 weeks, pre-diagnoses, my entire life as a Mother has been dealing with diabetes and all that it has flung at us. Freedom was never one of them. Fear YES, freedom NO.
For the first year, we did two hourly tests 24/7. That is a hell of a lot of nighttime alarms, blood sugars adjustments, what a relief it was to move to three hourly tests, it felt like pure respite. But now Nightscout allows us to rest.
Instead of setting nighttime alarms ‘just in case’, Nightscout lets us know if we must get up and attend to Max, only if bloods are heading in the wrong direction. It takes the fear away and this means more sleep, a lot more sleep. This means EVERYTHING….
We have also incorporated the "Sugar Surfing" (the topic of our upcoming event in May) and manage Max’s diabetes with fluidity. Diabetes is not a static condition; it is a forever moving tide of calm waters and raging seas, so I like to go with the flow. I watch the trends on my pebble (smartwatch) or on our iPad that is permanently set up in the kitchen, with Nightscout on the screen. This allows me to glance as often as I wish and monitor his trends. I can micro carb if I see a slight drop in trend, micro correct if I see that he is heading close to the top of his desired range. I can pre-bolus and actually see when the insulin has started working and decide when is a good time to serve food. I can be brave with insulin because I’m always watching.
This may sound like a lot of work and a lot of my time thinking about diabetes. Yes, it is a lot of work, but Diabetes is a lot of work no matter how you manage it. If I’m feeling overwhelmed and overloaded with screen time, numbers and graphs I can switch the screen off for an hour or two or a day or more. I can go back to checking his blood sugars/pump every 2-3 hours if I want. I have control over this, this is my choice. But, for me, Sugar Surfing with Nightscout is not near as much work as NOT doing all of the above. It allows me to be proactive not reactive.
You see, in the early days I felt that reactive was the only way we could be, anything else was just too risky. This was a very, very hard habit to get out of. Two weeks after Max’s diagnosis my husband and I brought him home from hospital. He was now a 5-week-old baby weighting just 6lbs. The fear of caring for such a tiny baby with minuscule and (potentially fatal) insulin injections was beyond terrifying. I can honestly say I lived in fear for the first couple of years. Now, instead of fear I have peace of mind, and it is…… EVERYTHING.
What is Nightscout?
It’s not something you can buy in a shop or online. It is an open source technology project where programmers from around the world have worked together to create it. Firstly, you will need to have a Continuous Glucose Monitor (CGM) or a Freestyle Libre. This is a vital piece of the Nightscout puzzle.
In a nutshell, the CGM reads the blood sugars and Nightscout shares it. The set up takes a good few hours and a good few coffees. A little IT knowhow would be a major bonus but not essential. Thankfully, for me, my hubby is IT savvy so he took care of this bit. Next you will need your hardware, depending on what CGM you have your requirements will differ (See table below).
Max has a Medtronic 640g pump with Enlite sensors. For this set up you need an android uploader phone (ideally small enough for him to carry around) and a spare Ascensia/Bayer Contour Link 2.4 glucose meter which is plugged into the phone via an OTG cable. The CGM sensor ‘speaks’ to the pump and the pump ‘speaks’ to the spare meter which in turns ‘speaks’ to the uploader phone, who then sends the info to the cloud allowing us to view Max's blood glucose levels on any device (android or apple) and from there can send data to a smart watch.
For those interested in setting up Nightscout there is full set up instructions and phenomenal support online. There are different Facebook groups depending on what format you are using. This work is all voluntary so we try and give support once we get our heads around it.
To finish up I would like to say thank you to all the wonderful Nightscouters out there, who have dedicated their time and knowledge to help so many of us who live with the struggle that diabetes brings. It has changed my life and the life of my family. #WeAreNotWaiting
If you are interested in finding out more about Nightscout, here are a few useful links to get you started.