LOOPED is an open and transparent effort to make safe and effective basic closed loop technology widely available to reduce the burden of Type 1 diabetes. So what does all that mean? Since my daughter was diagnosed with Type 1 Diabetes 4 years ago it has taken over our lives and while it doesn’t stop my daughter from doing anything, it adds complexity and so much organisation and planning to everything she eats and everything she does.
Looped came out of the #wearenotwaiting movement, as people (in particular, parents of children with Type 1) were not willing to wait for an approved solution signed off from the US FDA or the UK NHS to provide an ‘artificial pancreas’. An artificial pancreas is a man-made device that is designed to release insulin in response to changing blood glucose levels in a similar way to a human pancreas.
Currently, the Looped system is not something that can be purchased from a manufacturer but a system that requires work to install, support to use and equipment to purchase.
First of all, I needed to create an Apple Developer Account, this was necessary for me to create the app that would run on my daughter’s iPhone that would control her insulin requirements. I purchased a Rileylink which is the hardware required to get her insulin pump speaking to her continuous glucose monitor. This had to be part assembled after delivery.
Once ready, we were given access to the necessary raw code to create the app and off I went, compiling this on an Apple Mac to create an app directly onto my daughters iPhone. There are not only a LOT of pre-requirements that need to be loaded on the Mac, in terms of the development framework in order to execute code, but there is a LOT of configuration on the app once its built as I basically have to mirror everything that her current insulin pump does, but on the Looped app. There are instructions for ‘most’ of it, but some settings are obviously individual and it will take some weeks before we get everything right.
So what does all this technical babble mean? It means that for the first time in 4 years I can go to bed and the Looped app will control my daughters blood glucose, I can sleep without having to get up 3-4 times each and every night to check her blood glucose by doing a finger prick and using a drop of her blood on a special test strip to work out what level her glucose it at. If my daughters blood glucose dropped very low and we did not know, she could become confused or drowsy, or even lose consciousness and possibly die. This is a very real situation that we live with, 24 hours a day, but overnight is the worst time as neither my daughter or I would be aware of this happening without my intervention.
As you can imagine, 4 years of broken sleep is very difficult. Some parents have done it for much longer than I have. But it’s not just about the sleep, it’s about knowing that when I go to bed, my daughter is safe and will wake up the next morning – something that most parents take for granted, as did I before Type 1 Diabetes came rocketing into our lives with absolutely no warning.
My daughter also has a love of dancing; exercise lowers blood glucose. But as you can imagine, for someone who wants to be a professional dancer, she does a lot dancing, and a lot of exercise will lower blood glucose considerably, so the other amazing benefit of this Looped app is that it will decrease or shut off insulin while she is dancing as and when necessary. For a 13 year old girl, this is total freedom – no longer having to stop every 30 minutes to check her blood glucose and drink sugary Lucozade to keep her glucose levels up.
The artificial pancreas may not fix everything that Type 1 Diabetes throws at us, but it will give some peace of mind to the parents out there who don’t sleep for fear of what may happen to their children if they are not checked and their low glucose levels treat through the night.
We switched the Loop app on tonight and I am potentially looking forward to 8 hours undisturbed sleep, as is my daughter. It’s quite a momentous occasion and anyone who has Type 1 Diabetes and is reading this, will totally get it. We opened champagne, yes, it is that special. It’s life changing.
Special thanks to my work colleague, Lee, without whose help those pesky Xcode errors on the Apple Mac would have had me flummoxed for days!!
If you want to read more about Type 1 Diabetes and the effects on the child and the parent, these are great resources:
The Stress of a Newly Diagnosed Child with Type 1 Diabetes
Type 1 diabetes in children: How a parent may react to their child’s diagnosis