#Nightscout | Harboring Autonomy #WeAreNotWaiting #CGMintheCloud

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.

Originally published at This is Caleb…

WOW Lorraine. Your blog gave me goosebumps. I can remember my parents having a lot of the same feelings you described.

Caleb sounds like he's a fantastic independent boy with great parents.

What a great post! So glad Caleb is feeling more confident! It's really great! :)

That is great! How surprising! Sending you my best,

I’m so happy we held out for Share Direct instead of having to jury-rig Nightscout… I’m not a “do-it-yourself-er” when it comes to T1D (although I admire those who are!)

Thanks, y'all for reading and commenting. :)

I went to the nightscout site and had a question I did not see answered there. I wondered what is the security of the data. It seemed to say that the data would be widely available but nothing about how secure the data is. OF course, I know that nothing is secure online. The current theft of all the Anthem insurance holders' most personal ID info is a testament to that. But... I don't think I will try nightscout at this point given the lack of discussion about it on the site.

Hi, Nell.

I don't know the answer to your question. The impression that I have, however, is that there is not great security regarding the information. What I do know is that anyone who has the url to your website can access it. You create a unique url, so I don't think people can easily find it without it being given to them. There is no passcode or anything like that, though. I think the fact that you aren't seeing much on the topic is indeed indicative that security is not a focus.


Unless you set up your url with defining info (i.e. the person's full name) the data displayed is just the Dexcom output. It is not visibly linked to a specific person, in that anyone seeing it by accident would not know who it belongs to. Additionally, it is only an output of information. The url cannot control the device in any way, so there is no danger of your Dexcom "being hacked" or corrupted. Nightscout only allows you to collect and republish to the web the data that the Dexcom receiver will already upload to a computer.

Hope that helps answer your question.

Hugjen, that helps. But I also think Lorraine is correct too. Else they would talk about it.
I actually don't have anyone to view it other than myself but thought it would be a way to get around fact that I don't have a pc and don't use the pc component of my Mac. To upload the dex data.
Thanks for info.

Thank you, I had the same concerns about this!

thanks for sharing Caleb with us, I love hearing about his taking on more responsibility for self care.