Nightscout | Getting Started #wearenotwaiting #cgminthecloud

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.

IMG_7186In 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.

The Nightscout RigThis 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:

The Nightscout Project

CGM in the Cloud Facebook page







What’s in the bag and what isn’t

Here’s what Caleb carries inside his new PDM case: IMG_4569 This bag is about just the essentials. As a middle schooler, the essentials are little bit more than when Cal was in elementary school. He can no longer rely on stashing things in his desk since he’s in numerous classrooms throughout the day. Backpacks are not allowed to be carried during the school day and access to his locker is limited to arrival, lunch and dismissal. So the essentials are pump, blood sugar testing supplies and a variety of carb options. Going clockwise starting with the PDM we have:

  • OmniPod PDM which serves as both his pump controller and his blood sugar meter.
  • Test strips.
  • Lacing device.
  • Peanut free granola bar.
  • Sugar tabs and sugar shot.
  • Gu.
  • Emergency glucose gel.
  • CGM in the Cloud Rig.

Other things that may also be found in this bag are: phone, iPod, more carbs, and the Dexcom receiver. Not in this bag are the backup emergency supplies. We have a separate pack for those things that I typically carry with me. If I’m not with Caleb, he’ll keep it in a backpack. There are duplicates of these things kept in a bin in the nurse’s office when he is at school. IMG_4572 Here you see (and perhaps don’t exactly see):

  • Extra Pods.
  • Insulin.
  • Glucagon.
  • Epi-pen.
  • More emergency glucose gel.
  • Benedryl.
  • Flexifix and scissors.
  • Extra lancets.
  • Insulin pen needles.
  • Various wipes and tape: IV 3000, Unisolve, SkinTak, alcohol.
  • A business card with my contact information.

For those of you interested in the bag and all it’s compartments: IMG_4540 1. Main zippered compartment where Caleb keeps most of his stuff. It is the height and width of the bag and about an inch and a half deep. 2. Back zippered compartment which is also the height and width of the bag, but is not as deep. The CGM in the Cloud Rig fits precisely perfect in this compartment which is quite fortuitous since I hadn’t even considered CGM in the Cloud when I purchased this bag. 3. Nice flat zippered compartment on the back. Caleb will sometimes slide his iPod here for easy access. 4. Front zippered pocket in the front flap. 5. Another flat zippered compartment on the front of the bag. 6. Mesh zippered pocket. 7. Side flap pocket which could hold a lip balm with a little wiggle room. Screen Shot 2014-09-03 at 3.02.25 PMI know I already said my next post would be more on CGM in the Cloud, but my next post really will be more on CGM in the Cloud. I got several questions on the bag, so I thought I would squeeze this post in first.

The CMC Golf Urban Pack is available at Amazon in three different styles.