This is a picture of Caleb’s real-time pre and post lunch CGM data as I write this post. He is at school. I am at home.
In April of 2013 (oh my goodness, I cannot believe it was that long ago) I mentioned DexCom Share with much enthusiasm. There’s a rumor going around that DexCom Share may be nearing FDA approval, but that is just a rumor with no substantiation. I hope we’ll hear something soon.
It seems awkward to have a cradle and to connect to this cradle wherever you go and presumably carry this cradle around. But the idea of being able to access the CGM data of a person who is nowhere near you made me giddy.
Getting this information in this way has become a reality for hundreds (is it thousands?) of people. It’s not through DexCom Share. It’s though Nightscout, created by a grassroots group of people who realized they had the ability to make this happen themselves. It is not FDA approved or regulated in any way. It is a DIY-at-your-own-risk-open-source situation. Many are making it work and enjoying the benefits despite the risks associated with it being non-regulated.
When I first heard of it, I was skeptical, and it had nothing to do with it not being FDA approved:
1. Adding anything additional to Caleb – who I’m sure already feels like a pack mule despite the nifty bags I find – is not appealing in any way. (That whole cradle issue I mention above with regard to DexCom Share).
2. More devices/programs/databases means more opportunity for things to go wrong. We have so many variables and troubleshooting already. The thought of more is less than appealing.
3. Our goal is to encourage Caleb’s diabetes autonomy. Getting this nonstop flow of data seems like taking the reigns back into my hands, which is in direct opposition to our current goal.
4. This seems COMPLICATED! I don’t have time for complicated right now. No time at all.
This remained on my todo list though. I wanted to learn more and when the summer and many of its activities started coming to a close, I had the opportunity to investigate. By then, people had come up with some clever ways to carry the rig – not as cumbersome as I originally thought. (Ours pictured here on the left). I was seeing people I personally knew putting it into action which made it seem more attainable. When I finally sat down and looked at it, the setup instructions were very well written and although I would still consider it complicated, is was not difficult to get set up, just required a lot of attention to detail.
It’s been less than two weeks and we are off to a good start. We got started with the bare essentials for $73 for the whole rig using wifi access. We’ve worked out several kinks, added a data plan for about $9 a month, and are getting this integrated into our regular routine.
If you are interested in getting started or just learning more, here is where you should start: