NewsNotes - Fall 2018 by cdfdiabetes

NEWSNOTES CHILDREN’S DIABETES FOUNDATION — FALL 2018

HELPING LITTLE HANDS

A New Program for Pregnant Women with Type 1 Diabetes PAGE 2

The Helping Little Hands Program ensures pregnant women with type 1 diabetes have every tool possible (providing diabetes technology and supplementing appointment costs) to have a successful pregnancy and a healthy baby.

Pregnancy can be a beautiful and exciting time for women and their families, but type 1 diabetes (T1D) can add a new level of anxiety and stress. During this time, insulin requirements are constantly changing and any difficulties maintaining blood sugars, particularly during the first trimester, can cause complications for the baby. The Pregnancy and Women’s Health Clinic staff at the Barbara Davis Center (BDC) share that with proper planning and intensive blood sugar management, a woman with T1D can have a healthy pregnancy and baby. Throughout pregnancy, an A1c of 6.5% or less is recommended before conception and then a tighter target of 5 to 6% for the rest of the pregnancy. There is an increased risk of the baby having problems with his/her heart, kidneys, extremities, brain and spinal cord if A1cs are higher, as well as a higher risk of miscarriage and stillbirth. Providing Continuous Glucose Monitors Insulin sensitivity varies greatly throughout pregnancy. •

Usually insulin doses go down in the first trimester (insulin-sensitive phase) causing a high risk of severe low blood sugars

•

Insulin doses go up by double or triple in the 2nd and 3rd trimesters (insulinresistant phase)

•

Insulin needs decrease the most significantly after delivering the baby and placenta to pre-pregnancy doses or less

•

Breastfeeding can reduce insulin doses further

In the first trimester, pregnant women tend to experience more low blood sugars and because of this, may lose the normal warning signs they experience with low blood sugar. Lows are an immediate emergency for both mom and baby, but if mom can’t feel the lows, treatment may not be given in time. This is why a continuous glucose monitor (CGM) can make all the difference for a pregnant woman with type 1 diabetes. CGMs show blood sugar levels in 5 minute intervals, show trending arrows to indicate how quickly blood sugars are moving, and may cue an insulin pump to increase or shut off insulin dosing to stay in a safe range. This is particularly important during pregnancy since uncontrolled blood sugars can translate into serious consequences for the baby.

Unfortunately, CGMs are not always covered by insurance or their cost may be unbearably high for people with diabetes. This is why the Children’s Diabetes Foundation created the Helping Little Hands Program – to ensure mom and baby have every tool possible to have a successful pregnancy and a healthy baby.

WE NEED YOUR SUPPORT!

A NEW PROGRAM FOR PREGNANT WOMEN WITH TYPE 1 DIABETES

DONATE TO THE HELPING LITTLE HANDS PROGRAM AT WWW.CHILDRENSDIABETESFOUNDATION.ORG/PREGNANCY

HELPING LITTLE HANDS PROGRAM

Covering Appointment Costs

The monetary cost of co-pays/office visits, procedures, lab studies, medications, diabetes testing supplies and technologies, time off work, etc., is a major stressor for many pregnant women with T1D. Pregnancies complicated by T1D are considered high-risk, so a team approach with close follow-up and monitoring is necessary to have the best pregnancy outcomes. Diabetes care appointments alone increase from every 3 months to every 2-4 weeks with follow-ups each week as insulin needs change frequently.

• Risk of developing T1D is about 3% when just the mother has T1D • Risk of developing T1D is about 6% when just the father has T1D • Risk of developing T1D is as high as 10-20% when both parents have T1D Children of mothers with T1D can be screened for autoantibodies associated with the development of T1D after their first birthday through the TrialNet Pathway to Prevention Study at the Barbara Davis Center

Glucose goals in pregnancy resemble normal or nearnormal levels:

In addition to diabetes technology, the Helping Little Hands Program provides supplemental funds to cover travel expenses to get to the BDC’s Women’s Health and Pregnancy Clinic for frequent appointments, babysitter expenses for other children, and other costs to make sure Mom and Baby can receive the best diabetes care possible at this important time in life. Although managing a pregnancy with T1D is very challenging for women, words cannot describe the feeling of seeing a mother and her baby at her postpartum visit, happy and thriving. With motivation, dedication, hard work, and support from an excellent diabetes care team, pregnancy can be safe and successful. Many women with T1D report they had the best glucose control of their life during pregnancy because they would do whatever it takes to have a healthy baby. These courageous women gladly accept the challenges of this daunting journey and would do it all over again (and many do) when they see what all the preparation and hard work was for. If you would like to donate to the Helping Hand Program to provide technology and associated appointment costs for pregnant women with type 1 diabetes, visit www.ChildrensDiabetesFoundation. org/Pregnancy.

A1c <6% for most of the pregnancy Fasting glucose 70-95

Sarit Polsky, MD, MPH

Post-meal glucose <130-140 at 1 hour and <120 at 2 hours Rachel Garcetti, PA-C, MS

Lisa Meyers, MSW, CDE

The Barbara Davis Center has a worldclass Women’s Health and Pregnancy Clinic with a team of experts. Continued on next page.

TESTIMONIALS

MOTHERS’ REACTIONS TO THE HELPING LITTLE HANDS PROGRAM

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P r i nc ip al In ves tigato r: Ki m berly D ris c o ll, P h D C O MIRB # 17 - 0004 v . 7. 23. 18

COMIRB APPROVED 01-Aug-2018

B D C T E L E H E AT H RESEARCH STUDY WHAT IS THIS STUDY? Goal: Help adolescents with high A1c better manage T1D

COULD I BE ELIGIBLE?

Visits will be both in-person and via telehealth software:

• Have T1D for at least 1 year

• In-person: Once every 6 months at the BDC • Telehealth: Once every 6 weeks online

• Are 10-17 years old • Have an A1c between 9% and 12%

WHAT HAPPENS?

WHAT’S IN IT FOR ME?

Integrated care with BDC endocrinologist and clinical psychologist

Less in-person, more contact with providers via telehealth

Blood draws/physical exam at in person visits CGM insertion 2 weeks before in-person appointments

Support to manage T1D Cover labs and co-pay for visits Compensation for parent and teen

Want more information? Please call/text the study line at 303-349-3037 or email at BDCDriscollResearch@ucdenver.edu 5

ANOTHER RECORD-BREAKING YEAR FOR THE

RUN FOR THE RING

The 4th Annual Run for the Ring 5K and Kids Fun Run,

presented by Great-West Financial & Empower Retirement, had a record breaking fundraising year for 2018! From research teams to running fanatics, over 500 attendees joined in the cause on August 4th; running for the brass ring to support the ultimate cause of finding the cure for type 1 diabetes. This years’ racers performance t-shirts featured I’M THE “1” for those with type 1 who wanted to be recognized. The standard shirts had an optional back patch that read RUNNING FOR MY “1” for those who wished to honor the type one they were running for. Those who wanted to support the cause without waking up at daybreak took advantage of the new SLEEPING IN FOR YOUR “1” option. There was also a team building option and new fundraising component that allowed runners to be supported by family, friends, and coworkers. Participants warmed up with Zumba provided by Brittany Sheffert and, after a beautiful rendition of Star Spangled Banner by Paige Trumble, the runners were off with the siren from the Aurora Fire Department. The 5K course, which loops around the Anschutz Medical Campus, was enjoyed by runners, joggers, and walkers of all ages. Coming across the finish line contenders were cheered on by mascots and supporters. Winners were given medals and certificates at the awards ceremony sponsored by Shinesty. We had a variety of vendors this year for participants to interact with. Families enjoyed entertainment from 95.7 The Party and kids sported painted faces and had their favorite animals tied into balloons while slurping down Kona Ice for a cool, refreshing treat. The Kids Fun Run, sponsored by Dexcom, had its own course with splash zones, music, mazes, and mascots. They even had a bounce house and giant ball to roll around in. It was a blast for everyone who attended! Run for the Ring is made possible by our incredible community, volunteers, and sponsors. We truly couldn’t do it without you! We would like to thank Guild Member and Event Chairman, Katie Grassby, the dedicated Run for the Ring Committee, and Master of Ceremonies, Buzz Sweat. We would also like to express our appreciation to event sponsors, Great-West Financial & Empower Retirement, Transcend, Nutrislice, Shinesty, Dexcom, Eldorado Springs, prize sponsors: Bladium and META MVMT, and all of our gift bag sponsors: for helping The Guild of the Children’s Diabetes Foundation raise awareness and promote diabetes education in the community.

Photos: © Steele Style Shots

Run For The Ring To benefit The Childrenâ&#x20AC;&#x2122;s Diabetes Foundation

DIABETES NEWS

ARTIFICIAL PANCREASES: THE FUTURE IS NOW Perspectives from a Frequent Trial Participant

By Sasha Amiscaray, CDF Advocate

When I was first diagnosed with diabetes, I was

told there would be a cure by the time I graduated high school. Considering I only have two years left of high school now, the odds of finding a cure by then are slim to none. On the bright side, I have been given some opportunities of a lifetime and have been able to participate in clinical trials for multiple artificial pancreas systems. For most of these trials, I stayed in a house or hotel with the other participants so the medical staff could keep a close eye on us. The weeks I have spent at houses and hotels for clinical trials were some of the best weeks of my entire life. Over the years, I have been able to try out multiple systems and for that I am forever thankful.

MEDTRONIC 670G My very first trial was for the Medtronic 670G, which took place over three years ago. It was a five-day long trial, but I was only in Auto Mode for the last 24 hours of the trial. Auto Mode is a hybrid closed loop system. When used with the Guardian sensor, Auto Mode can track numbers and trends and adjust your basal rate accordingly. If your blood sugar is rising, Auto Mode will increase your basal and if your blood sugar starts dropping, Auto Mode will stop your basal. In 2016, the 670G was approved for commercial use and I immediately upgraded to it. As of today, I am still currently using the Medtronic 670G and I love it. Some people do not like it because of the frequent alarms and being kicked out of Auto Mode, but once you learn to work the Auto Mode system, it can do wonders for your numbers. My range is 70 to 200 and I am within that range nearly 24/7. It took me over a year to figure out how to keep my numbers within such a small range, even in Auto Mode, but overall, I would absolutely recommend this system. I would also recommend turning on the rise alerts and turning off the alert before high alarm. I found that the alert before high alarms were not very accurate and when it told me I would be high in 15 minutes, I was often high a lot sooner than that. With the rise alerts, my blood sugar could be any number, but the minute I had double arrows up, I would be alerted, and I was able to correct and stop my blood sugar from rising before my blood sugar was high.

DIABETES NEWS

INSULET/OMNIPOD Once again, a year later, I was asked to be in another trial, this time for Omnipod and Dexcom. This was another hybrid closed loop system, where your basal would automatically be adjusted based on your blood sugar. I really enjoyed that the Omnipod was tubeless. I worry about losing the PDM (the device where you test your blood sugar and bolus from), but I think that in time, you would become accustomed to carrying it around everywhere like you do your phone. The one thing I do not like about the Omnipod is that it can only carry 200 units at a time. As someone who uses a lot of insulin, especially at meals, 200 units wonâ&#x20AC;&#x2122;t last me more than two or three days. I wish my sites would last three to four days instead. It was a great system, however, and I really enjoyed wearing it. It did a fantastic job keeping my numbers in range and I hope it will come out in the next year or two.

ZONE MPC A year later, I participated in another trial for Zone MPC (ZMPC). This was not a closed loop system, but instead an open loop system. The other study participants and I wore an insulin pump and carried around a phone (not our personal phone). We would use the phone to bolus remotely to our pump. The goal of wearing the ZMPC was to minimize hyperglycemia and hypoglycemia. One thing I enjoyed about wearing the ZMPC was the ability to wear an insulin pump, but never really touch it unless I needed a site change. I constantly have my phone out to text friends, check social media, and take pictures etc. so bolusing from a phone was convenient. You can wear your pump anywhere because you donâ&#x20AC;&#x2122;t have to worry about taking it out to bolus. I do think I was low a little more often that usual on this system, but no severe lows. Of course, the objective is to remain in range, in which case I was not the entire time. I recall being low more than I was high on the ZMPC. I am not sure when it will be available for commercial use, but when or if it becomes available, though it is not a closed loop system, I would recommend it simply for the convenience of being able to bolus from a phone. If this ever became a closed loop or hybrid closed loop system like the 670G, I feel it would be a game changer.

Continued on next page.

DIABETES NEWS

iLET/BETA BIONICS Recently I participated in a two-week long clinical trial with six other teens, where we all wore the iLet pump for one of the weeks. The iLet is used with the Dexcom and automatically adjusts your basal according to your blood sugar. The best part about the iLet? No carb counting. For me and the rest of the teens in the study, not having to carb count is a pretty big deal. All the iLet wanted to know was when we were eating (the beginning, middle, or end of the day) and how big our meal was (tiny, small, normal, or larger than usual). If my sensor failed or ended, the pump would use its knowledge about my numbers and trends to create basals. No settings or carb ratios were entered the pump creates that all on its own. The iLet I wore was about as big as an iPhone. There is another model called the Gen 4, which is smaller and sleeker. It has room for two reservoirs, one for insulin and one for glucagon, so lows are more easily avoided/treated. The Gen 4 iLet is also supposed to be waterproof and have wireless charging. Sounds great, right? The iLet sounds like the future of all technology and I don’t think any of us could have imagined anything like it even ten years ago. My experience was not all fantastic though. While the pump was set to keep my number at 120, I was constantly in the 200’s. Where I normally would have gotten 10 units for a meal, the iLet gave me only five or six. I certainly don’t intend to lower your hopes for this incredible piece of technology. While I, nor anyone else in the trial, had stellar numbers all week, I fully believe that if we had more than a week on the pump, we all may be more excited for this to be released commercially. Like the Medtronic 670G, this pump needs time to understand your body and trends, especially after exercising and eating. If we had worn the iLet for two weeks instead of one, our numbers could have been amazing. Because the iLet had no idea how much insulin any of us normally got for meals or how high or low our typical basal rates are, it needed time to learn and figure that out. This technology that we could only dream of is now a reality and I think that is so exciting. While it will be a couple years or maybe longer until the iLet is available for commercial use, I think it is technology like this that keeps propelling us closer to a cure. TANDEM Not too long ago, I began another clinical trial for Tandem. It pairs with the Dexcom G6 and can adjust basal rates based on your blood sugar. Like the other pumps, it can increase your basal rate if you’re going high and decrease your basal rate if you’re going low. I have not started using the pump yet, just the sensor, so my experiences and thoughts about this are limited. This pump has a smaller and sleeker profile than the Medtronic 670G and Omnipod-Dexcom configuration and is a touch screen as well. A big plus about using this system is that it uses the Dexcom G6, which requires no calibrations, which means there are no finger pokes. Of course, if you feel the Dexcom needs to be calibrated because your readings are off, you should test and calibrate it. Always listen to your body. For me, it is a big plus that there is hardly any finger poking at all. Overall, these systems are all fantastic. As these insulin pumps are approved for commercial use, I would recommend each one of them to anyone looking to switch pumps or start using one. It all depends on preference and what you want in a pump, but there are a lot of options out there.

The experiences that come with participating in all these clinical trials are nothing short of life changing. If you are given the opportunity to participate in a trial, I would recommend it without a doubt. I have met so many incredible people with type 1 diabetes and become friends with them. I still talk to all of them almost every day. Not only that, but I have also gotten to know the staff at the BDC super well. Every time I see them in the hall we say hi and catch up a little bit. In a way, it is like one big dysfunctional family was created and is still growing. We all understand the troubles of diabetes and we all have our own issues, but we all come together in the end and we’re all there for each other. These trials bring a closeness that is hard to find so quickly with strangers, and there is not one bit of me that regrets doing any one of these trials. They bring strangers together and show us that we are stronger together, but more so than that they give me, and hopefully you, hope for the future and hope for a cure.

Team Clinic

You are invited to our Team Clinic at Barbara Davis Center!

If you have type 1 diabetes and are a patient at BDC, come try out a different and fun way to have your

FUN AND DIFFERENT

SMALL GROUP SIZES

COUNTS AS A REGULAR APPOINTMENT

next appointment. Kids individually meet with the doctor/NP Parents and kids meet in separate groups

BE WITH PEOPLE YOUR OWN AGE!

Both parents and kid ďŹ nish the visit with their doctor/NP

Visits last 1.5 - 2 hours

PARENTS MEET IN A GROUP TOO!

Questions? Call 303-724-9606

Make your appointment Call 303-724-2323

HAVE A CHANCE TO TALK ABOUT THINGS THAT MATTER TO YOU! 11

THE GUILD

2018 CHARLOTTE TUCKER SCHOLARSHIP The Guild of the Children’s Diabetes Foundation

proudly awarded $4,000 scholarships to 20 welldeserving Barbara Davis Center patients pursuing their passion through higher education. The recipients are headed into a variety of fields, all with big dreams and an inspiring drive. Reception Chair, Stephanie Babbitt, welcomed recipients, families and guests. Guild President, Barb Oberfeld, voiced congratulations to the recipients and Julie Sklar, a current college attendee and type 1, shared her words of wisdom as the recipients head off to college. Lori Finch, Scholarship Selection Chair, introduced the recipients and Barb Oberfeld presented each with a certificate of recognition. The recipients were invited to say a few words and many gave thanks to the Children’s Diabetes Foundation and the selection committee, and a few shared some clever jokes and anecdotes with the audience.

A special thank you to Stephanie Babbitt, who served as Scholarship Reception Chair and to the Selection Committee – Ron Carda, Lori Finch, Jen Findlow, Helen Hanks, Warren Hanks, Jan Livingston, Barb Oberfeld, and Mike Wood. The scholarship program was established in memory of past Guild President, Charlotte Tucker, who encouraged young people to pursue higher education.

Brendan Abernathy University of Colorado Boulder

Elizabeth Anderson University of Northern Colorado

Zetana Behymer Colorado State University

Renee Choksey Colorado State University

Remi Clarke University of Wyoming

Jaycie Dillenburg Northeastern Junior College

Skylar Gallegos University of Colorado at Colorado Springs

Britney Hart University of Northern Colorado

Trystan Henderson Colorado Mesa University

Tanya Macias University of Colorado Denver

Kerry McCawley Metropolitan State University of Denver

Bryce Montes Metropolitan State University of Denver

Michael Prichard Tabor College

William Smith Arapahoe Community College

Ryley Sorbo Colorado State University

Abel Tesfa Colorado State University

Quinn Tomasino Emmanuel College

Celina Tovar University of Colorado Boulder

Irene White Community College of Aurora

THE GUILD

Jace Helmick Fort Lewis College

SCHOLARSHIP OPPPORTUNITIES FOR 2019-2020 The Guild is always proud to award scholarships to high school seniors and college students who are current patients at the BDC. Applications for the 2019-20 school year will be available in February 2019. Patients who are college or trade school bound will be notified regarding applications. If you do not receive information or have questions, please contact Sara Santacruz at 303-628-5110 or email Sara@childrensdiabetesfoundation.org.

THE GUILD

HIGH HOPES GOLF TOURNAMENT The 10th Annual High Hopes Golf Tournament,

presented by NexGen Resources, was held at the gorgeous Columbine Country Club on August 13th. Golfers were greeted by META MVMT for a free massage and performance enhancing exercises to up their game. New and returning golfers relished in the perfect weather for a day of golf participating in competition holes, such as the Hole-in-One contest to win a 2018 Mustang from our sponsor O’Meara Motors and a Hole-In-Two challenge to win an all-expense paid 3-day trip to Monterey California after Derek “Big D” Hines starts off by driving the ball 400+ yards. The tournament was followed by refreshments and appetizers during the award ceremony, where winners were given custom pin flag keepsakes while hearing the compelling account of Parker Durand, a CDF advocate who has pricked her finger over 17,000 times since being diagnosed with type 1 diabetes. This years’ silent auction featured hot ticket items like wine & dine packages, brunch for 4, baskets galore, golf lessons, allinclusive golf packages from a variety of courses, and signed memorabilia from the Denver Nuggets. For 10 years, this event has supported the mission of The Guild of the Children’s Diabetes Foundation to raise funds for clinical and research programs at the Barbara Davis Center for Diabetes, promote education and raise awareness, assist families in need, provide continued education scholarships, and sponsor social activities for children and their families. Much appreciation goes to Event Chairman, Kurt Liss, and the devoted event committee. We would also like to express our gratitude for Judy & Charlie McNeil and NexGen Resources being our Eagle Sponsor all ten years running. Many thanks to our Birdie Sponsors ADA-ES, AMG National Trust, EKS&H, and Morgan Stanley for their continued support, as well as our underwriting sponsors Gina & Kurt Liss, Tangy & Brad Buchanan, and Snapshots.

Over 100 golfers gathered on July 9th at Pinehurst

Country Club to support the Childrenâ&#x20AC;&#x2122;s Diabetes Foundation at the Tied to a Cure Denver Golf Tournament, presented by McDonald Automotive. The morning started off with the event chairmen, Michael McDonald, Dan Fuller, and Todd Schieck, sharing their personal connection with type 1 diabetes. Paul Wadwa, MD of the Barbara Davis Center (BDC) thanked the players for their contributions to the tournament as it supports groundbreaking research and muchneeded care initiatives at the BDC to help thousands of families. The golf players enjoyed a beautiful day on the course and got to enjoy a long drive, an opportunity to win a vacation or car, and delicious food and drinks. For the first time, they also visited the Pay It Forward Tent, where CDF Advocates, Abbey Smolen, Joleigh Burgett, Liam Harper, and David Ramirez, showed the players their medical devices and shared what life with type 1 diabetes is like. After meeting the advocates and hearing their story, almost 100% of the players donated additional money to the cause.

THE FOUNDATION

TIED TO A CURE GOLF TOURNAMENT

The Childrenâ&#x20AC;&#x2122;s Diabetes Foundation is so thankful to all the players, sponsors, volunteers, and participants who made this day fun and educational. If you would like to participate in the 2019 Tied to a Cure Denver Golf Tournament, you can contact Amanda Garrett Miller at Amanda@ChildrensDiabetesFoundation.org.

BABARA DAVIS CENTER

HIGH BLOOD SUGAR AND DIABETIC KETOACIDOSIS By G. Todd Alonso, MD; Assistant Professor at the Barbara Davis Center for Diabetes

Diabetic ketoacidosis (DKA) is a dangerous condition

characterized by high blood sugars, increased levels of ketones in the blood and urine, and increased acid levels in the blood. Although with good treatment patients typically recover, it is the leading cause of death in children with diabetes. At best, a typical episode of DKA leads to a three day hospitalization, often in the intensive care unit. Avoiding DKA is very important. The first and most obvious step is keeping an eye on blood sugar trends. In clinic, I frequently see teenagers and young adults who go days or weeks between blood sugar checks. Not only does this make it nearly impossible to reach blood sugar goals, but it dramatically increases the risk for DKA. Infrequent blood sugar monitoring is especially dangerous for people who use insulin pumps, as the first sign of a failed infusion set is hyperglycemia. In fact, because of this danger, I will not order an insulin pump for patients who do not wear a continuous glucose monitor or check blood sugars at least four times every day. Once you realize that blood sugars are elevated, we need to deliver more insulin. Within an hour of rapid acting insulin, blood sugars should be declining. If not, or if blood sugars do not eventually drop below 200 mg/dL, we should suspect that either the body did not receive the insulin (e.g. leakback or failed infusion set) or something is causing the body to be more resistant to insulin. At this point, we also need to check for ketones. Ketones are acidic by-products of fat breakdown and a hallmark sign of low insulin levels. We can test ketones either in the blood or in the urine. The traditional method has

Photo ÂŠ JensenSutta.com

been to dip a urine ketone test strip into urine. Color change indicates the level. These strips are around $12 for a box of 100 and available without a prescription. Blood ketone levels can be tested with a meter much like the glucometer. It is convenient, especially for young children in the middle of the night. These test strips are much more expensive, around $5 per strip, and insurance coverage is variable. Although the price suggests that blood ketone testing is much fancier, we can do just fine with the urine strips in most scenarios. In short, elevated ketone levels mean that we will need to deliver more than the usual amount of insulin to get blood sugar back to target range. It also suggests that you may have a brewing illness or a pump site failure. Check with your diabetes team to get specific instructions for how much insulin you will need when ketones are elevated. Fluid intake is also very important in the setting of elevated blood sugars and/or ketones. While insulin helps shut off ketone production, it takes vigorous hydration to help your kidneys clear the acid. Hyperglycemia also increases the risk of dehydration, which we combat at home with oral fluid intake. If you are having trouble clearing ketones or getting blood sugars back into target range, call your diabetes provider for help. This is by far the most common after-hours phone call we receive. Repeated episodes of vomiting with the inability to keep clear fluid down, increased respiration rate, and a strong fruity odor on the breath are all indicators of very high levels of ketones suggestive of DKA. If you notice any of these signs, proceed directly to the emergency room.

by Eileen Corcoran

THE DIAGNOSIS Our journey started on Easter weekend in April of 2017

when we heard the diagnosis of type 1 diabetes (T1D). My daughter Olivia was 14 months old and was coming down with what appeared to be the flu. We went in to the doctor’s on Friday morning and they diagnosed it as a virus and sent us home. Later that evening Olivia was progressively getting worse with vomiting, fever and extreme fatigue. She was drinking fluids profusely and every time she would wake from sleeping her crib was soaked. I literally couldn’t keep a dry diaper on her. While I was rocking her she looked up at me with that look of a baby crying out for help. Even though she couldn’t talk, it became increasingly apparent we needed additional medical help. Later that night, we went to the emergency room at Baylor Hospital in McKinney, Texas. Again, the diagnosis was a virus. We were about to be discharged when the doctor decided to test her glucose reading. Shortly thereafter, he came back with the result that her blood glucose was 330 and the devastating news that he believed Olivia had diabetes. They put us in an ambulance and transferred her to Children’s Medical Center where the diagnosis was later confirmed.

BABARA DAVIS CENTER

A TODDLER’S T1D JOURNEY

A NEW REALITY After several days in the hospital we prepared to go home. However, in reality nothing could truly prepare us for the change that was about to turn our daily lives upside down. The 24/7 around the clock healthcare for a 14 month old with T1D. The long sleepless nights that seemed like they would never end. The new routine of carb counting, finger pokes every two hours, and insulin injections. All of this was compounded by the fact that Olivia simply couldn’t communicate or understand why these life-changing events were happening to her. Adding to the stress was the realization that I would no longer be able to work. As a single mother, affording daycare for a toddler with T1D was not feasible. The thought of Olivia and I living on our own looked like a far away dream.

Continued on next page

BABARA DAVIS CENTER

FAITH, FAMILY & FRIENDS Slowly faith would be restored that life could get better in spite of the blow dealt by T1D. This was a result of a lot of prayer and the incredible loving support received from family and friends. I will be forever grateful to my brother and sister-in-law for opening their home and hearts to Olivia and I. It provided us a safe and loving place to learn a new way of life with T1D. After 6 challenging months, we would move into our own apartment thanks to the generous support of Olivia’s father. And, of course, a major heartfelt thanks for all the hours of support from friends of old and friends of new like the Facebook group called Diapers and Diabetes. An answer to a prayer came when I received a phone call on Christmas day of 2017 from my Aunt and Uncle. As a result of their love and generosity, Olivia would be now going to the Barbara Davis Center in Aurora, Colorado. Tears of joy knowing that Olivia would be receiving the best care possible for T1D overwhelmed me.

HOPE FOR THE FUTURE From our first visit in January of 2018, we knew we were in a very special place. The staff was incredibly warm and caring. Dr. Gregory Forlenza made us feel like we were family and not just another patient. He truly listened to my concerns and my fears. I will never forget when I gave him Olivia’s log of blood glucose readings and he said, “So Eileen, what you are telling me is you have been Olivia’s CGM the past 9 months!” I am not sure he knew how desperately I needed to hear that I was doing something right. Within weeks we would return for our next visit and they would put Olivia on a Dexcom CGM and a new insulin pump. Something we had been trying to get approved since her diagnosis in Dallas. Finally, some uninterrupted sleep during the night became possible! More importantly, we were starting to see dramatic improvement in Olivia’s control of T1D. Each visit is a reminder of the blessing it is for us to be going to a center solely committed to T1D treatment. I remember waking the morning after our first visit to the Barbara Davis Center with hope for the future. A hope for a better and healthier life for Olivia and not an endless fear of T1D. A heartfelt thanks to Dr. Forlenza and all the staff at the Barbara Davis Center for giving us this renewed hope and a place that we can call home!

H. Peter Chase, MD

Q: A:

I recently heard about an implantable continuous glucose monitor (CGM). Can you tell me more about it? The Eversense CGM system was approved by the FDA in June 2018 for use in adults with diabetes. A single-arm (no controls) study of 36 subjects was reported at the recent (2018) ADA meeting. The CGM was studied over a 6 month period and had an accuracy similar to current CGM devices. The sensor is approximately 1.5 cm (2/3 inch) long and is placed under the skin via an outpatient surgical procedure. An adhesive patch (changed daily) is placed over the implanted sensor. A transmitter can then be attached to the patch to transmit glucose values every 5 minutes to a mobile app or Apple Watch. The surgery and CGM system are not yet approved by medical insurance companies.

Q: A:

Can you explain why the Medtronic 670G artificial pancreas is called a hybrid closed loop system and not a complete closed loop system? The FDA required food boluses to be administered by the user and thus it is not a complete closed loop system. This is because blood glucose levels peak around 60 minutes after eating, whereas insulin activity peaks about 90 minutes after giving. Thus, if the artificial pancreas puts out insulin when the CGM shows rising sugar levels, the insulin peak would be about 30 minutes after the peak in blood sugar. Increased hypoglycemia would be likely. It is thus necessary for the person using the system to remember to administer their insulin bolus for food, ideally about 20 minutes before eating (assuming the sugar level is not low). At some point in the future, an insulin which acts more rapidly will become available and the system may become a complete closed loop system. Do you have questions you would like to submit to the Q & A? Contact Mattie Peck at Mattie@ChildrensDiabetesFoundation.org

Photo ÂŠ JensenSutta.com

DIABETES NEWS

NOVEMBER IS #DIABETESAWARENESSMONTH #DiabetesAwarenessMonth is the perfect time to educate all of your friends, family, acquaintances, classmates, coworkers and anyone else about diabetes. Don’t just tell them you have type 1 diabetes though… tell them what it means to have diabetes, the management that is required, and what you go through on a daily basis. Start the conversation! Here are a few creative ways you can help educate those around you and prepare for #DiabetesAwarenessMonth: Create a presentation about diabetes and share it with your classmates, coworkers, etc. When someone asks why you’re poking your finger, tell them why – in detail! Write a blog, story, or article to share on social media* Take photos of the life of a type 1 to share on social media* Wear blue – the color for diabetes – to show your support Add a frame to your Facebook profile picture (available at www.facebook.com/profilepicframes and search for “Children’s Diabetes Foundation”) Download printable materials at www.ChildrensDiabetesFoundation.org/printables to distribute in your community to spread awareness

*Send your materials to Mattie@ChildrensDiabetesFoundation.org if you’d like the Children’s Diabetes Foundation to feature your story, video, or photos on social media pages to spread awareness to thousands!

Facebook.com/ ChildrensDiabetesFoundation

If every type 1 and their family member educates someone, we can overcome the myths and stereotypes of diabetes. Let’s make this the most visible #DiabetesAwarenessMonth yet!

@CDFdiabetes

DON’T FORGET TO USE: #DIABETESAWARENESSMONTH 20

Makayla started a non-profit called One Monkey’s Miracle at the age of 12 to help children, young adults, and their families pay for essential diabetic supplies they would otherwise not be able to afford (or affording would cause financial hardship). The inspiration for the foundation comes from the devastating loss her family experienced in 2013. Makayla lost her aunt and godmother, Elizabeth “Busy,” to diabetes complications at the young age of 26. This set Makayla on a mission to help as many people as possible in a very personal way. When it was time for her to complete a project for her Girl Scout Silver Award, she knew she wanted to do something in Busy’s memory. She put together sixty care bags for Barbara Davis Center children who have been newly diagnosed with type 1 diabetes. Through her work on her Silver Award, she partnered with many outside organizations who provided help and supplies to add to the bags. Currently, Makayla and her family are working on putting on a second virtual race that will help build funds to continually help families in need.

WINNERS’ CIRCLE

TURNING PAIN AND HEARTBREAK INTO HOPE FOR OTHERS

CONGRATULATIONS TO SUSIE HUMMELL ON HER RETIREMENT! Susie Hummell has been an active member of

the Children’s Diabetes Foundation since it began in 1978 and for over 22 years, she worked as the Guild Manager of The Guild of the Children’s Diabetes Foundation. After so many years of dedication, enthusiasm, and camaraderie, Susie retired at the end of August and will enjoy spending more time with her family and friends. We are so thankful for Susie’s hard work to establish this thriving program with committed volunteers that have raised millions of dollars for the Barbara Davis Center and its patients over the years. Susie has made an incredible impact on so many lives and has been a shining light in the diabetes community. Thank you, Susie. We will miss you!

NewsNotes is published quarterly by the Children’s Diabetes Foundation. We welcome your comments. If you would like to submit an article or a letter to NewsNotes, send information to: Mattie@ childrensdiabetesfoundation.org Zachary Reece Graphic Designer Mattie Peck Dana Davis Editors

Children’s Diabetes Foundation Board Members and Guild Presidents EXECUTIVE BOARD: Mrs. Barbara Davis, Chairman Dana Davis, Executive Director Richard S. Abrams, M.D. Mr. Peter Culshaw Stephen Daniels, M.D., Ph.D. Chairman of Pediatrics, The Children’s Hospital, Denver Mrs. Nancy Davis Rickel Steven Farber, Esq. Daniel Feiten, M.D. Mr. Shane Hendryson Mrs. Arlene Hirschfeld Mrs. Deidre Hunter Mr. Shawn Hunter Mrs. Tracy van Orman Mr. Cameron van Orman Mr. Ken Rickel John J. Reilly, Jr., M.D. Vice Chancellor for Health Affairs & Dean, School of Medicine, University of Colorado Denver Mrs. Stacy Mendelson Robinson Marian Rewers, M.D., Ph.D. Ex-Officio Member SCIENTIFIC ADVISORY BOARD: Richard S. Abrams, M.D. Director, Colorado Preventive Medicine, Rose Medical Center; Clinical Professor of Medicine UCD Mark Atkinson, Ph.D. Professor of Pathology & Pediatrics, Director, University of Florida Diabetes Institute Ezio Bonifacio, Ph.D. Professor for Preclinical Approaches to Stem Cell Therapy, Center for Regenerative Therapies, Dresden, Germany Robert Eckel, MD Professor of Medicine, Physiology and Biophysics, University of Colorado School of Medicine Matthias Hebrok, Ph.D. Professor in Residence and Director, Diabetes Center, University of California, San Francisco

Steven Kahn, MB, Ch.B. Professor of Medicine, Director of the Diabetes Research Center, University of Washington Rudolph Leibel, MD Professor of Pediatrics and Medicine, Co-Director, Naomi Berrie Diabetes Center, Columbia University Alvin Powers, MD Professor of Medicine, Molecular Physiology/Biophysics, Division Director, Vanderbilt University William Tamborlane, MD Professor of Pediatrics, Yale University School of Medicine ADVISORY BOARD: Sir Michael Caine Mr. and Mrs. Robert A. Daly The Honorable Diana DeGette, U.S. House of Representatives, Colorado Mr. Neil Diamond Mr. Placido Domingo Mr. John Elway Mr. David Foster Mr. Kenny G Mr. David Geffen Mr. Magic Johnson Mr. Quincy Jones Ms. Sherry Lansing Mr. Jay Leno Mr. Paul Marciano Mr. Mo Ostin Sir Sidney Poitier Mr. Lionel Richie Mrs. Adrienne Ruston Fitzgibbons Mr. George Schlatter Ms. Maria Shriver Mr. Steven Spielberg and Ms. Kate Capshaw Ms. Brenda Richie Ms. Barbera Thornhill Miss Joan van Ark Mr. Gary L. Wilson Mr. Stevie Wonder

THE GUILD PRESIDENTS: Founding President, Amy Davis Mrs. Gina Abou-Jaoude Mrs. Christy Alberts Mrs. Jamie Angelich Mrs. Karen Aylsworth Mrs. Linda Broughton Mrs. Tangy Buchanan Mrs. Joy Burns Dr. Bonita Carson Mrs. Nancy Cowee Mrs. Dalyla Creaghe Mrs. Margy Epke Mrs. Chris Foster Mrs. Helenn Franzgrote Mrs. Sally Frerichs Mrs. Debbie Gradishar Mrs. Helen Hanks Mrs. Marty Jensen Mrs. Gail Johnson Mrs. Sharon Kamen Mrs. Janet Knisely Mrs. Shelley Lucas Mrs. Suzy Love Mrs. Judy McNeil Mrs. Sally Newcomb Mrs. Barb Oberfeld Mrs. Gretchen Pope Mrs. Carol Roger Mrs. Kay Stewart Mrs. Diane Sweat Mrs. Loretta Tucker Mrs. Jane Weingarten

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