Clinical Trial Update: Control IQ rocks!

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.

Why We Walk? 2017 Update.

This fall we will mark five years since Trey and our family started this journey with Type 1 Diabetes.  It has been a path of heartache and healing, new learning and new friends, small victories and big changes.  And needles, lots and lots of needles!  And while there continues to be progress towards a cure for T1D and developing technologies that help Trey manage his disease, we are not there yet.  This is why we continue to support the JDRF in their mission.

If you have been following our journey, you know that Type 1 Diabetes is an auto-immune disease.  It is not caused by diet or lifestyle choices.  It hits without warning and has no cure.  There was nothing we could do to prevent this disease.  He will never grow out of it.  It is chronic and life threatening.

Thanks to JDRF funded research and resulting technology advances, there is hope! Trey now wears two medical devices connected to his body through infusion sets at all times. His pump administers insulin to him 24 hours a day and helps give additional insulin for meals and snacks.  Insulin is life sustaining, without it he would die.  His Continuous Glucose Monitor (CGM) measures his blood glucose constantly, allowing us to monitor them remotely from an iPhone.  This year Trey upgraded to a new pump, which will soon be connected to his CGM.  And hopefully, in the next year, be able to react to his high and low blood sugars by turning his insulin on and off.  If none of that makes sense, just know, it makes Trey’s Type 1 diabetes easier to manage and makes him safer.

At age 11, 2017 has been a great year for Trey.  We narrowly missed an ER visit because of the stomach virus and had a blood sugar drop to 25 (dangerously close to a seizure) on a school field trip.  We have inserted over 120 infusion sets and done over 1,000 finger pricks.   Never a dull moment here, but he is still going great.  As I write this, he is at a kayaking and rock climbing camp on the James River, and I am happily able to monitor his blood sugar at home (technology is amazing!!).   This year he will start at Goochland Middle School (eeek 6th grade!) and continues to love Science, Math and reading.   He has also gotten into Mountain Biking and playing piano.   Trey has not let Type 1 slow down his sense of adventure or his ability to achieve.

Our family believes strongly in the JDRF mission and continues to be very involved with the Central Virginia JDRF chapter.  Trey was once again chosen to be a Youth Ambassador at the JDRF Gala, for the 4th year – getting on stage in front of hundreds of attendees and generous donors.  Our family also volunteers at the gala, serves as the Mentor Chair for newly diagnosed families and occasionally speaks at JDRF events.

We thank you for your continued love and support!

i-nzdh9nd-l

Thank You 2016 Donors & Corporate Sponsors

Trey’s Avengers has raised over

$50,000 in just four years!

This year we hope you will celebrate a huge achievement – Trey’s Avengers flew over $50,000 in total donations to JDRF since we started walking just four years ago.  And it is to each and every one of you to whom we owe our gratitude.  You all have done amazing things and we could not be more thankful.

So to every person that made this possible thank you – for your donations directly to our walk team and participating in our events, for sharing our events on social media and joining us at the walk, for every penny you send and all your kind words.  THANK YOU!  You are our team!

In addition, each year we have an absolutely amazing group of local businesses and corporate sponsors that support Trey’s Avengers.  It is through their generous gifts that we are able to hold fun events, give our awesome prizes ad raise even more money for JDRF.

The list is long!  And we are so greatful.  These folks continue to invest in our communities and we hope you will contiinue to support them with your business.

To our amazing tee shirt sponsors, who helped us raise over $2,000 – THANK YOU!!

Sierra Pacific Mortgage – CJ Grinnell – 804-301-3422

Custom Kitchens – Richmond, VA –  804-288-7247

ClockTower Realty Group – Rhonda Howlett – 804-815-0642

Aarrow Transmission – Richmond, VA

Long & Foster Realty – Ron Paquette 804-814-1398

Angus Dentistry – Midlothian, VA – 804-794-6893

Dunkin’ Donuts – Richmond Area Locations

i-9qjbdgx-l

A huge thank you to our 1st Annual Cornhole Tournament hosts and donors.

The event was a huge success and we raised over $2,500.

Hurleys was our event sponsor and they were awesome.  In addition to taking care of our platers and guests during the tournament, they donated drinks to all our players and had food and drink specials all afternoons.

And to all our friends at the Shoppes at Innsbrook that donated prizes – thank you!

Capital Ale House

Beach Car & Grill

Boychik’s

Firehouse Subs

Joey’s Hot Dogs

And last, our sincere appreciation to Little Love’s Photography for donating their time and talent.

Thanks to everyone who participated in Little Loves Photograph’s JDRF Mini Sessions, we raised an additional $1,000 for JDRF.

i-nvcwtt2-l

 

 

2016 One Walk

Every year we have been so fortunate to be surrounded by the most supportive and beautiful group of friends, family, neighbors and even a few people we barely know, who come out to support Trey’s Avengers on Walk Day.  This year was no different and we are so thankful to each one for helping to make it a great day.

This year we were joined by so many amazing people, including two other families who are personally affected by Type 1.

Trey had huge support from our amazing school here in Goochland County, Randolph Elementary.  Here he is with some folks from RES, including one of his favorites, his 4th Grade teacher, Ms Gates.

It was a great day for a walk.   Byrd Park is beautiful and makes for a lovely stroll.  Below is Trey with one of his biggest supporters, his younger brother Tarver.  Who at 8 years old can help Trey test his sugar, give him insulin and respond very well to dangerous lows.  T1D is a family affair.

And while, we are working away with our Trey’s Avengers events and fundraising activities, I am grateful to have a group of local T1D moms in my corner.  They each represent a different team, but we are all in this together.  The teams represented below helped raise close to $100,000 this year.  So proud of and thankful for these ladies.

i-vz7534v-l

Our team would like to send its greatest appreciation to everyone who comes together to help raise money to support JDRF, Type 1 reasearch and our son Trey.  Every donor. Every walker.  Everyone who shared a positive word.  Every business that supported us. We were so excited  (and overwhelmed with gratitude) to share that we raised over $16,000 this year, bringing our 4 year total to over $51,000.  We truly could not do it without all of you!

About Trey

As you know, Trey’s diagnosis came without warning and currently, without a cure. It was not caused by something he did or ate.  Trey has been so amazing.  Trey has learned to be an active, fun-loving boy of ten and at the same time manage a life-threatening chronic illness.

Thanks to technology advances developed through past research initiatives funded by the JDRF, Trey now wears two medical devices connected to his body through infusion sets at all times.  His pump administers insulin to him 24 hours a day and helps give additional insulin for meals and snacks.  His Continuous Glucose Monitor (CGM) measure his blood glucose constantly, allowing us to monitor his levels remotely from an iPhone (yes that is very cool technology!!).

Although Trey still has many finger pricks per day, multiple infusion set insertions per week, has to count every carb he eats and administer insulin for his meals, he an adventurous, happy and otherwise healthy 10 year old boy.  He excels in school and loves math and science – future biologist or endocrinologist in the making perhaps!  He loves to read – his favorites are Happy Potter and Percy Jackson.  And he loves the great outdoors – rock climbing, kayaking, swim team and camping with his family.  We are so proud that his Type 1 diagnosis has not slowed down his love of adventure.

Our family believes strongly in the JDRF mission and continues to be very involved with the Central Virginia JDRF chapter.  Trey was once again chosen to be a Youth Ambassador at the JDRF Gala.  He did amazing on stage in front of hundreds of people sharing his story.  He has also chosen to have his birthday party guests donate to JDRF instead of birthday presents.  Our family also volunteers at the gala, serves as the Mentor Chair for newly diagnosed families and occasionally speaks at JDRF events.