DSOK Spotlight: Maddy

maddy rigby Gilliam M.

My daughter, Maddy, was diagnosed with T1D in 2010 when she was 5 years old. We got started on a pump within a month and added a CGM a year later. For years I’ve groused about the inability of meters and pumps to text me her blood sugar while she’s at school. It doesn’t seem that hard to do, technologically, but I guess it’s too small a market (and too big an FDA hassle) to be profitable.

This summer I saw a reference to “CGM in the Cloud” on a diabetes forum and the name piqued my interest. After a bit of Googling I discovered the official name is “The Nightscout Project”. Nightscout is an open source, do-it-yourself project developed by parents of T1 children.

Here’s a basic rundown of what Nighscout entails: Connect your Dexcom receiver to an Android mobile phone. The phone transmits the CGM data to a website that you established as part of the setup instructions. Just bring up that website on your phone or computer any time you want to know your T1’s real-time CGM data. There’s even a way to get the data on a Pebble or other “smart watch.”

This looked awesome! My husband and I read everything on the Nightscout web page and assembled Maddy’s new rig just in time for school. Nightscout allows my husband and I to unobtrusively monitor Maddy’s CGM data throughout the day. She is busy at school and doesn’t always realize she’s going low. For example, one afternoon I looked at Maddy’s Nightscout info and noticed she was at 76 with double arrows down. I texted the teacher to have Maddy check her blood sugar. After a couple of minutes Maddy texted me back saying her BG was 62 so she drank a juice box.

Before Nightscout we had a baby monitor set up between our bedrooms so we could hear the Dexcom squawk if Maddy went high or low during the night. We were thrilled to toss out the static-prone baby monitor and immediately set up a laptop to use Nightscout at night. This gives us (and especially Maddy) so much freedom. She can go on a bike ride around the neighborhood, or to a friend’s house, and I can see her data any time I want. Nightscout is an invaluable tool and I don’t want to be without it. It has allowed Maddy be more like any other non-T1D kid, and removed a lot of worry on our part.

For information on the project and how to get set up, visit www.nightscout.info. Also check out the group “CGM in the Cloud” on Facebook.

Note from DSOK:

This story describes one mom’s method of searching, exploring and finding a solution to some of the T1D challenges faced by many parents. DSOK does not endorse, promote or support Nightscout or the Nightscout Project.

Although this solution has proven to be very beneficial to this family, some might philosophically disagree with its use. Some might suggest that use of this type of application could increase a parents’ level of anxiety about blood glucose control or increase confusion, or possible errors, if more than one parent or health care provider is viewing and making insulin adjustment recommendations. Additionally, some teens or pre-teens might see the use of this type of product as additional forms of parental control. More specifically, some might feel as though they were, “always on stage,” or having to “constantly perform.” This level of parental involvement might be exhausting to some; especially those who are constantly struggling for independence.

The Nightscout product may or may not be something suitable to your families’ needs. Remember, please consult with your physician or diabetes care team before making any adjustments to your or your child’s diabetes treatment plan.

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