photo 1Do you currently have a Dexcom CGM for your child? Have you ever wished that there was a way that you could see that data while they were at school, and you were 50 miles away at work? Or at dinner with your spouse or on a date, and wished there was a way you could know what was happening while they were at grandma’s or with a sitter? Or if your child was away at college in Massachusetts and you were sitting on your couch in Los Angeles? Yeah. This new program does that…

Okay, first things first. I was invited to be a small group of beta testers, working with the system and software to search for bugs and find issues. This software isn’t ready for mass consumption yet, people behind the scenes are still working on ways to easily scale this for a lot of users. It still crashes on occasion. It isn’t easy to install and isn’t very intuitive either. And we are still learning that certain pieces of equipment don’t work properly or play nice with each other. It isn’t a commercial product with an 800 support phone number or a warranty. So consider this a preview of something that is coming. Soon. And know that this isn’t authorized by Dexcom, the FDA, or any company for that manner. You could break your dex, your phone, a cord, or something and it may not be covered under warranty. So there is that. And support for this currently consists of a couple of enterprising type 1 family programmers that congregate in a group on Facebook. In technology terms, and I suppose diabetes terms too, this is seriously bleeding edge…

Here are some links for more info:

We Are Not Waiting

Diabetes Mine

photo 5 photo 4I created a couple of videos that teased the setup and posted them on my Facebook page earlier this week. They created a small stir, and I promised a more in depth look at the system. Here is that video, followed by a video that shows just one of the things that you can do with this set up. The watch is in no way necessary, all you need is a device with a web browser, but the watch adds a serious convenience factor. And again, this don’t eliminate any BS testing. We still test as often as we did. For those of you with Dexcoms, you already know that accuracy isn’t it’s strong suit, but trending is. And for users of other CGM’s like the Medtronic unit, there is currently no way to utilize this with anything other than the Dexcom G4.

This next video shows just one way that we will utilize this set up. I take Stella running around a local lake 2-3 a week. Well, I run and she rides her bike. We do 6 miles which takes me about an hour. We used to stop every 15 minutes to test her BS. Now, I just need to look at my wrist to know what her BS is doing, and I can let her know it’s time to drink some Gatorade without ever having to stop. Totally amazing.

So this is a first look. It isn’t ready for primetime yet, and even when it is, it will be with some assumed risk on the part of whoever uses it. The system is buggy, not particularly user friendly or intuitive to set up, and the documentation is sparse. The people behind it are parents of type 1’s with jobs just like us. They aren’t available 24/7 to set everyone up and spend hours trouble shooting each persons system. But let’s be serious for a second. If you have a child with type 1, and that child spends any part of their day away from you (in school, sports, a playdate, with the grandparents) you want this. You need this. You deserve this. You have no idea why this doesn’t already exist. If you decide to talk about this, share this, or pursue this, please use the hashtag #wearenotwaiting

Here is a video of me at the grocery store while Stella was at home several miles away, shortly after breakfast.

 

 

Obviously, the key feature is that you can access the CGM data while your child is away from you. But what if you are all at home? Does it serve a purpose then? Well how about leaving this in your child’s room, while you have an iPad on your night stand? Or what if you live in a large house, or a 2 story house, and your child is upstairs in their room, while you are down in the kitchen making dinner? Your child could be in the backyard playing, or you could leave the phone and receiver on the side of a soccer field. Put it in a back pack while your child rides a bike or horse. Or have your college aged student leave it on in his dorm room at night, and you can check on them a couple of times a night.

Here are my thoughts on this set up. If you have had a conversation with me about the CGM, you know that I am a big fan of what the Dexcom can do, but I have always prefaced it by saying “I wish it had blue tooth or wi/fi built in so it could send the data to an app I could access”. Well, not it does. This makes me absolutely giddy! There are still some bugs, and there are still improvements being made, but I can be sitting at my desk at work, look at my phone or a web page on my computer, and know what is happening to my daughter’s blood sugar during PE. Or her social studies test. It isn’t perfect, but it’s awesome. And it will get better. This isn’t available to everyone yet. But it is close. I suspect sometime in June you will be able to put all the pieces together yourself and be on your way. The pieces include the Dexcom G4, an android phone (not all phones work, it MUST HAVE OTG capability) a mini USB cable, and an OTG mini USB cable. The cloud based server/web app has a monthly subscription fee of $11-$12.

Welcome to the future

Team Blackdogsrule

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16 Comments

  1. So… For the tech community affected by children with T1D and who are very capable of putting this system together without help, can you point us in the right direction? Because I’m pretty close to running Snoopy to try to hack the Dexcom protocols and just parse all the data myself, but I’d rather not start from the ground when things are already rolling.

  2. Why hasn’t Dexcom already done this? I am a parent of a 9 yr old T1 girl (diagnosed at 3) with the G4 Dex

    • Frank Wisneski

      That is a great question David. The answer is most likely the FDA. Apparently the G5 is starting off with these features and more. How many will see release? No one knows yet

  3. I talked to my son about this who is a computer geek. He pointed out that its important that this is a read only system. This would make the Minimed pump/CGM not well suited. Someone might be able to hack into your pump and do some harm. Wish I had a Dexcom now. This is a really exciting step with so many possibilities…..

  4. Hi, I am one of those engineer dad’s. I am trying to make it easier to setup and use. Have you checked out our wiki lately. The instructions have really come a long way: https://github.com/rnpenguin/cgm-remote-monitor/wiki

    Anyone can help make the instructions better as we are still in the draft phase.

  5. securityfreak

    Just discovered your site. I need this, my wife needs this and my 7yo T1D diabadass need this. Time to order and android and pebble…although I’m an apple whore…I’ll still do it.

  6. So there is no way to use the dex7?

  7. My daughter has the dexcom g4. I am sure I can figure out how to connect the dexcom to the droid. However, Did you create the app that is reading the cgm to the cloud? I am not sure how to do this….

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  9. Could there be a way to add a mini-usb bluetooth dongle instead of having it attached to the phone?

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  12. This is awesome Frank. We just got our CGM to work in conjunction with testing the DAD and prayer while Gavyn goes to ND for college in 2 weeks… i would love to set this up on my phone so i can have a little piece of mind. He will be living in an on campus apartment with Chief and my worry is no one will be there if he has a low. We will set him and chief up with lots of snacks and carbs for lows but he is a teen and likes to eat this stuff when it’s not urgent… at least if I can see trends and he is not responding i can try to get him some help… so scared. Hard enough to send a kid to college. But one that could slip into a coma because of uncontrolled blood glucose levels adds a whole different challenge.

  13. Are you looking for Beta testers? We would be very willing !!!

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