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RileyLink... Here we go!

*I do not advise anyone to do this without their doctors consent. I am in no way a medical professional and I am simply documenting a decision that we made as a family. If you would like medical advice of any kind please speak directly to a medical professional.


I would say that as a family, we are pretty good at managing Lyla’s blood sugars which is the main treatment for Type 1 diabetes. It has been eight years since diagnosis, six since we got our pump the Omnipod and four years since we discovered Dexcom. Everytime we went to the endocrinologist we were given a good report and with a few exceptions we have managed to keep her A1C in proper range. Therefore, it never occured to me to do anything different.


Our journey to looping started when I had heard that the new T-Slim pump had Basal IQ. I thought that would be nice to have, meaning it would shut down when it detected a downward trend preventing urgent blood sugar lows that could lead to loss of consciousness or even death. But the more I read and asked around about switching to another pump I could not possibly imagine using tubing since we never have (Omnipod is tubeless). I also struggled with the idea of disconnecting for every little thing. It simply would not fit the active lifestyle that Lyla is accustomed to therefore, Omnipod is our best and only option.My hope was that eventually Omnipod would catch up and integrate their technology with that of Dexcom.


It wasn't until I began to follow other families who are also Type 1 on instagram that I learned about the RileyLink (I do not suggest getting your medical advice from Instagram just FYI). I felt fairly educated about Type 1 but I was totally naive to what this was. When I kept coming across it over and over on others people post I finally googled it. What I learned is that it is a non- FDA approved device (a little sketchy) that allows your Omnipod to talk to the Dexcom.  I almost ordered it right there but waited to talk with my husband first. He looked through several articles and testimonies of people who have used it and determined that it was worth a shot.

 

So what does it do…

It loops your Dexcom (Continuous Glucose monitor) with your insulin pump so that they “talk” to one another. 


Why is this important…

Based on blood sugar readings the pump will adjust its ratios and insulin output to accommodate the trending blood sugar. So instead of guessing on how the trend is going to go there is actual data that is used to make the corrections necessary. It also has “predictive technology” meaning it will show you what it predicts blood sugar to be in the coming hours (mic drop)!


How will this impact our care...

I dropped Lyla at dance yesterday and was able to determine based on her RileyLink that should would likely not get low during her time at dance. Which allows me to leave her with a little less worry in the pit of my stomach. However, if she started to trend high the Rileylink will notice and increase her basal output (hourly insulin) to accommodate the high meaning that instead of pulling her out of class everytime she is high or low the technology should predict and stop it. Translation, less fruit snacks, less correctives.


Okay, okay, this thing is not perfect by any means but so far in the last 24 hours Lyla has been in range almost 100% of the time! Literally, even as good as we are maintaining blood glucose levels this almost NEVER happens!


So you see this little plastic device that showed up on our doorstep three days ago has already revolutionized our diabetic care. Which begs the question, why isn't this FDA approved (I cannot even begin to dig into this one)?


Now I am not going to lie the building of the RileyLink (because you actually have to program and code the device) is time consuming. But there are really good instructions out there that take you step by step through the process. This makes it possible for someone like my husband, who isn't what I would call a computer wiz, capable of building it in one sunday afternoon. 



I will continue to keep you posted about our experiences with the Rileylink. As anyone with Type 1 knows an artificial version of a pancreas will never be the real thing however, it's getting a lot damn closer!

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