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Tuesday, November 18, 2014

CGM in the cloud from a parents perspective.

I am a member of the CGM in the Cloud Facebook Group (https://www.facebook.com/groups/cgminthecloud/ which has nearly 8,500 members right now) and day after day I read the incredible stories of how the Nightscout project has helped thousands of parents of children with type 1 Diabetes.  Some of their stories bring tears to my eyes even though I can only imagine how much something like this it just a giant help to them and keeping their childs blood sugar from crashing and not knowing about it and just how much it helps when their child is away at school or anywhere away from home.  It is not yet FDA approved but as the hash tag says it all #WeAreNotWaiting it has been proven time and time again to be a priceless tool for many parents and even could be used for adults who have lost the ability to sense their lows or who have to sleep alone at night. 

Laurie Schwartz is a mother of a type 1 Diabetic son and on day one of using the CGM in the cloud set up believes it saved her son from a very close call.

Here is what she has shared with me to share with you all:

In the pursuit to have every tool possible for maintaining “normal blood sugar”, I found myself embracing the benefits of the diabetic alert dog. I have been active in the Diabetic Alert Dog community since training our alert dog in 2010. Willow Wonka is our son ‘s alert dog. My use of the alert dog with the CGM has been our focus for better management.

On April 20, 2014, our close friend who heads a wonderful diabetic alert dog organization, Crystal Cockroft of Canine Hope for Diabetics, screenshot and texted me a picture of a Pebble watch with CGM information. She thought I would like the technology. I immediately wanted to jump on a plane to San Diego and pay any amount of money to acquire the technology. I was shaking with excitement over the envisioned benefits the system could offer. We had to have it!

The picture was posted on her Facebook friend’s page, Jason Adams. I contacted Jason minutes later on Facebook and he” heard” my desperation. He assured me that a plane trip or an expensive fee was not required. By April 22, just 48 hours later, we had purchased everything and had the system working. Then, remarkably within just 3 hours, the CGM in the Cloud potentially helped us avert a dangerous medical crisis.April 22, 2014: Day One using The CGM in the Cloud/ Nightscout...My desperation to acquire this technology resulted from a culmination of stress due to five months of bitter fighting with our mail-order pharmacy to stop shipping us 90 day supplies of warm insulin. Just days earlier, I had finally gained approval from our insurance to receive local retail pharmacy, in the hopes it would be properly stored and handled cold insulin. My recent success was a result of my efforts the previous week frantically arguing that bad insulin would kill my child because his body and our pump settings were all adjusted to the unknown effectiveness of warm less effective insulin. My claims were my true fears but I didn’t truly understand what that could look like.

We have had our kids in year-round swim team for four years mostly because the exercise is fantastic for blood glucose control. We have systematically created a process to maintain stable blood sugars during practice with Adam’s consumption of simple glucose drinks. We check blood glucose midway through practice or more frequently and one parent is always close by.

Our prior success in managing to maintain steady blood glucose even with potentially weak insulin gave us a false sense of security. In hindsight, it was a recipe for disaster. We were so comfortable with our carb/exercise protocol that I was even taking the alert dog to classes away from our son during some swim practices.

University of Denver Hilltoppers has 80-100 kids in the pool every evening. On this night, when we had the Cloud system for the very first time, I was at dog agility class with our alert dog, Willow Wonka. My husband was swimming his own laps in the open adult lane with Adam just 2-3 lanes away. I watched on the CGM in the Cloud, Adam’s CGM readings decreased and then report a 49 mg/dL. I repeatedly texted my husband, then determined he was probably unreachable by text because he was swimming and for the first time since Adam was on the team, called the pool office and asked that Adam and my husband be removed from the pool to check his blood glucose. The BG check revealed Adam was 70. For us, a BG of 70 is not necessarily an emergency but Adam had been consuming simple glucose all through the practice and should have been 100-140. My husband gave him (an unusually large amount for us) 15 g of carbs without additional insulin, waited 15 min. and with Adam’s insistence that he was fine, let him back in the pool. Adam got out five minutes later reporting feeling extremely low and sick. His feelings of that symptomatic persistent low did not resolve appropriately as his BG would not increase above 70 mg/dl for about an hour even with additional large amounts of dextrose and interrupted insulin.

We can only attribute this never before seen persistent low to the use of the new effective insulin combined with the effects of heavy exercise on his body’s insulin sensitivity. The timing of our access to the CGM in the Cloud was so fortunate, and I believe lifesaving. The realization that we so narrowly escaped a tragic situation motivates me to continue to express my gratitude and assist in other T1 families learning about this amazing system.

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