In October 2020, Trey was accepted into the Control IQ study at UVA. We could not have been more excited. For the first several months he was in the control group (meaning life remained the same and while in the study, he did not actually get to use the experimental technology). But in December, after doing his part, he was then given the “trial” tech to use for several months. And it was amazing! While he was in the trial, the adult version of this was approved by the FDA. So at 14, leaving the trial, he was eligible to move directly onto the new pump. Several months later, after data from the pediatric trial Trey was in was submitted to the FDA, this was also approved for the pediatric market. It has been a lifesaver for so many. When this technology was conceptually developed several years ago, it was due, in part, to support from the JDRF, who helped fund the research. We are so thankful…. our experience is below.
Trey’s Trial Update!
Lots of you asked so I am going to share the good news. Short version – its going great. Long version, well if you like to learn things, read on. Going to share a little base information so it all makes sense.
Trey’s pump (In fact all insulin pumps) have dozens of settings throughout the day that are meant to mimic the daily rhythm of his body (like your pancreas would), as well as help him correct for food he eats. We use these reports (see the image) to make changes to those numbers fairly regularly. Sometimes they work great for weeks or months, sometimes you have to make changes every few days. The goal, stay within range (between 70-180). Assuming you have a healthy pancreas, your body will keep you between 80-110.
Trust me when I say, that is way harder than it sounds for a Type 1. Until now, it required dozens of daily decision – we account for everything Trey eats, exercise, sickness, weather, stress and with a little good luck and proper timing we get close. When we get it wrong, we correct. More sugar if he is low. More insulin if he is high. And those corrections happen 24 hours a day. Yes, I have woken up in the middle of the night to keep my kid alive more than you want to believe and so have my fellow T1D parents, grandparents and family.
Several months ago, Trey’s pump (the Tandem X2) added technology to communicate with his continuous glucose monitor (they are two separate devices) and then to cut off his insulin if he went low. That’s a big deal – continuing to get insulin when your sugar goes low can very dangerous (think woozy > passing out > dying). With that, he started going low much less.Still following? I hope so, because this is where it gets good!
The trial he is in takes that same pump and technology and adds the ability to to administer insulin when he is high. (Insulin makes sugar do down, sugar makes it go up) The FDA has been hesitant to approve this. The Tandem Control IQ technology is currently waiting for the FDA to approve it in ADULTS. Trey is in the pediatric trial and it is following steps behind so we can get this to all the T1D kids (we have waited a long time).So whats been our experience? This picture are the reports from the week before we started and the week since.
—- First, in the big green numbers – Trey’s average blood sugar has dropped from 172 (an A1C of 7.6) to 141 (an A1C of 6.6). That is an amazing improvement.
—- Next notice that line that says CGM readings. Ok, we have had that for years. But just notice – this is only possible because his continuous glucose monitor (CGM) reads his sugar 290 times a day.
—-In the bar chart right below, that middle green bar is time in range. Trey has been in range 81% of the time, as compared to 63% before.
—— Then there is that pretty chart with all the vertical bars. That is his average sugar throughout the week, by hour. Before the technology, we struggled with over night highs. With the Control IQ corrections he is not going high at night and more importantly he is waking up in range.-
— Last, most notable to me, is that we are doing this with way less effort. I was climbing into his loft every night when I went to bed to correct his sugar and sometimes over night. And when we mess up it is much quicker to correct our mistake.
So yes, its amazing. But here is what I hope you remember. Its not a cure. Trey still has two different injection points on his body that we change every 3 and 10 days. He still has to tell his pump every time he eats and how many carbs we think are in it. He still risks going low, carrying emergency sugar and glucagon everywhere he goes. And he still has to take insulin all day., every day to survive. All day. Every day. (And we wont even start on insulin affordability).If you have read this far. Thank you! I hope it made sense and you learned something. We are certainly excited about what this will mean, not only for us, but so many T1D families.