In 2003, Pam and John Henry’s 6-year-old daughter, Sarah, was diagnosed with type 1 diabetes. Once the initial shock wore off, Pam’s maternal instincts took over. She needed a better way to stay on top of Sarah’s care. Since then, she founded BlueLoop, a place for logging medical information, getting reminders, or keeping caregivers in the loop.
Q. What is the biggest change you’ve seen in yourselves since Sarah’s diagnosis?
It’s been 16 years since Sarah’s diagnosis, so the gradual transition of responsibility from parent to child has been most significant, beginning with something as simple as finger poking with independence, all the way to where Sarah is today, learning the ins and outs of insurance, ordering supplies, and eventually paying for them herself. Sarah’s independence has reduced our stress, but to be honest, the stress never goes away completely. There have been many stages to this process of her gaining independence.
Q. How does diabetes affect your family’s daily life?
When Sarah is at college, she’s six hours away, which means we don’t have much daily interaction about diabetes. Because she’s good at self-management, we only get a call if she needs someone to talk to, especially if she doesn't feel well, or needs help troubleshooting. The ability to "share" data through the Dexcom app lets us into her world during these times. I think occasionally sharing data helps her to know someone has her back. This is very different from the early years in her diagnosis, when we were very involved.
Q. Why BlueLoop?
After Sarah’s diagnosis, our challenge was wanting to know what was going on when she was not under our direct supervision, especially at school. We also discovered some communication challenges with her school nurses. We created BlueLoop to solve those problems. It gave us an instant communication channel with Sarah, her teacher, and the school nurse. There are tons of examples of the benefits we experienced from BlueLoop. Most important was that we no longer greeted Sarah when she came home from school by asking what her blood glucose numbers were that day, what she ate for lunch, or when she last checked her blood glucose level. Because we received updates throughout the day, we greeted her at the door with, “How was school today? Did you have fun painting in art class?” etc. Getting back a little normalcy meant a lot to all of us.
Q. Whom is BlueLoop for?
BlueLoop is ideal for newly diagnosed families, because it’s the only tool available from day one that logs activity and coordinates care among home, school, and clinic. It’s also helpful for parents of young children since the system sends instant notifications, providing much-needed peace of mind. With the recent release of our insulin dose calculator and built-in CGM adjustments, learning the elements of dosing insulin is safer and easier.
Q. Does BlueLoop support pump users?
While many of our families are newly diagnosed and injecting insulin, we have pumpers who use BlueLoop for the back-and-forth communication between school and home. Sarah started pumping when she was in first grade. We liked the idea that she could administer insulin more independently with a pump. She was already checking her blood glucose levels and treating lows in the classroom. Now, with her pump, she could also administer insulin without going to the nurse’s office, because syringes weren’t part of the process.
During the transition to pumping, we depended on BlueLoop notifications to know how she was doing throughout the day. It’s all about peace of mind and the ability to get a more comprehensive view of what’s happening throughout the school day. We received information on her insulin dosing alongside how ketones were being handled, the tummy ache she shared with the nurse, or logistics around her diabetes for a field trip to the zoo next week. It’s all about enhancing the communication about all aspects of life with diabetes.
Q. When you meet a family with a newly diagnosed person, what is your advice to them?
We’re fortunate to be in contact with families every day. Most are newly diagnosed, and we’re often the first non-medical people they’ve talked to about diabetes. First and foremost, they need to hear – from another parent – that their child is going to be okay. Parents need to also make sure their child knows they’ll be okay, especially since many will undoubtedly hit the internet and find misinformation. Also, many parents have false expectations that blood glucose levels will always be within range if they focus on a list of doctor’s orders. We talk to parents about the impact of their reactions around checking blood glucose levels and help parents understand that there are simply too many factors outside of their control to expect “perfection.” Our message is this: Treat blood glucose readings as merely data that tell you what to do next. Blood glucose readings should never be described as good or bad, and we encourage language like, “I’m so glad you checked your blood sugar. Now we know what we need to do next.” With our daughter’s permission, we like to share the story of how her blood glucose spiked every time she sat next to a cute boy in class. The moral of the story: Fluctuations are the norm. Any one blood glucose level is not a measure of how well you’re managing the disease; it’s an indication of what to do next – such as give insulin, treat hypoglycemia, or do nothing.
Q. What’s next for you and BlueLoop?
We did a lot of development last year, adding several insightful reports and a sick-day tool that all really help families. This year we’re focused on new ways of educating families on insulin pumps, CGMS and a host of other great resources.
Q. How do people get involved?
People can sign up for BlueLoop through our website, blueloop.mycareconnect.com,or call us at (302) 468-7543 to sign up over the phone. Our foundation provides BlueLoop free of charge, and we’re available to families 24/7. Families can reach us via phone or firstname.lastname@example.org to ask questions, get connected to resources, or simply talk parent to parent. Now, we can share important information with our families on several relevant diabetes topics through our mobile app as well as online.
Dexcom is either a registered trademark or trademark of Dexcom, Inc. in the U.S. and/or other countries. CM-000881_A