By Maureen Gilmer, Riley Children’s Health senior writer, email@example.com
Mason and Beckett Chaney deal with a life-threatening disease every day, but you wouldn’t know it to look at them or talk to them.
They share jokes, finish the other’s sentences and always watch out for each other.
The brothers have type 1 diabetes, once called juvenile diabetes, a chronic condition in which the pancreas produces little or no insulin. Without insulin, they can suffer diabetic ketoacidosis, which can be deadly if left untreated.
The disease, believed to be caused by an autoimmune reaction, often strikes with little obvious warning. It slowly destroys the cells in the pancreas that make insulin, a process that can go on for months or years before symptoms appear.
It might seem like a raw deal that two of Bryan and Katie Chaney’s four kids have the condition, but they are learning to manage it with the help of “smart technology” that takes some of the worry out of their days and nights.
Gone are the days when Mason, 13, and Beckett, 7, had to prick their fingers to check their blood sugar levels, then give themselves shots of insulin when needed.
Now, they rely on electronic devices that constantly “talk” to each other to make sure their average A1C stays in range, avoiding dangerous drops or spikes that can compromise their health.
This “closed-loop” insulin system involves a sensor placed under the skin, which tells an insulin pump how much insulin to deliver throughout the day. Katie can view her sons’ glucose levels and receive notifications on her smartphone, as well as input the amount of carbohydrates being eaten at meals.
“We’ve adjusted, but it’s not easy,” the Richmond mom said. “I’m committed to making sure they feel like kids first. I want it to operate in the background of their lives.”
It was Beckett who was diagnosed first – at just 15 months old. His mom noticed he was becoming lethargic, not eating well, but drinking a lot. His diapers were soaked. After a trip to the pediatrician and lab tests, the doctor called within an hour to tell Katie to get her son to the hospital immediately. His blood sugar was off the charts.
She took him first to a Richmond hospital, but he was quickly transported by ambulance to Riley, where a pediatric team of specialists was waiting to treat him.
“That whole period is really a blur,” said Katie, who was pregnant with her fourth child at the time. “It was traumatic for me as a mother, and I remember just feeling really sad. It felt very heavy in the beginning.”
Three months later, Katie delivered her youngest child, now 5, and three months after that, her oldest, Mason, was also diagnosed with type 1 diabetes. He was 8 at the time. Neither of the couple’s other two children has the disease.
“By the time Mason was diagnosed, I had adjusted a little bit, but my daughter was just 3 months old. It was a lot. People tried to tell me it was going to be OK and that it was manageable, but I almost couldn’t believe them. It just felt impossible.”
With the help of the boys’ Riley team and the support of family, friends and school staff, the Chaneys have learned to manage this condition, but advances in technology definitely make it easier.
Mason and Beckett are longtime patients of Dr. Tamara Hannon, endocrinologist and medical director of the pediatric diabetes clinic at Riley Children’s Health, which sees 1,800 diabetes patients each year.
She describes the evolving technology as a gamechanger for families and patients.
“It’s huge,” she said during an appointment with both boys last week. “I’m just thrilled that kids are able to use these devices, and it is improving their diabetes outcomes and also giving their families a little peace of mind.”
The technology means nights are easier for everyone in the family. Dips in blood sugar are common for children while sleeping and can become life-threatening, resulting in seizures or even loss of consciousness. The closed-loop insulin system recognizes when a child is experiencing a dip in blood sugar and automatically administers insulin to an appropriate level.
“Nighttime was hard,” Katie said. “We used to have a lot of disruptions, lots of beeping alarms. This has helped everyone. It has decreased the worry and anxiety, and it allows other people to feel comfortable taking care of them – that’s always been a struggle. These tools are a little more user-friendly, and the boys are older now, so they can do most of it themselves.”
Mason, a seventh-grader, can tell you how his continuous glucose monitor, sensor, pump and handheld remote device all work together to keep him healthy, even while he participates in after-school sports, including wrestling, baseball and cross country.
Dr. Hannon congratulates the teen on his diligence, noting that the reports she receives show he is managing the system well. His A1C reading at last week’s appointment was 6.3, which is right on target, she said.
“Do you know why we care about your blood sugar being in target range? Number one, so that you feel good, and number two, so that we can keep your blood vessels healthy.”
Mason understands all that, but for him, the system is better in a big way: “It’s way better than the shots,” he said.
“Even though these pumps are helpful, they are very sophisticated little computers,” Dr. Hannon said as she looked at a handheld device the size of a cellphone. “But as kids grow up with these systems, they become the experts. They live it,” she said.
While she looks at the readings on paper, that doesn’t show her what happens every day, she said. It just shows his blood sugar.
“He’s a whole person, not just a blood sugar. When he eats, he has to tell the pump to give him more insulin. He wears a device on his stomach that continuously infuses insulin underneath his skin. And that computer he has directs that device.”
The amount of insulin the boys give themselves is directly proportional to the carbohydrates they have in their diet, Dr. Hannon explained. And carbs are not off-limits.
“They are growing boys, and they eat a lot. We want them to get at least half of their calories from carbohydrates – that’s a normal amount,” she said.
Playing sports is also part of their lives, and Dr. Hannon encourages that.
“We want them to be able to play sports, just be sure they know what their blood sugar is. It’s a little bit of a science project,” she said.
Type 1 diabetes is a fairly common chronic disease in childhood, affecting one in 350 school-age children, Dr. Hannon said.
“When I was first diagnosed, I didn’t want to think it was real,” Mason said, “but it’s really nothing. It’s just part of daily life.”
With the wisdom of a 7-year-old, Beckett pipes up, “It is what it is.”
While the new automated technology is not as sophisticated as the actual pancreas, which makes insulin, the pump both boys wear gives them insulin doses as needed, adjusted for what they eat and their blood sugar.
“It’s not perfectly automatic, so it’s not quite what your pancreas would do, but it is smart in that you have lines of communication that are inputting how much insulin to give a person over time,” Dr. Hannon said.
The evolution in care has helped their whole family, Katie said, adding that her 5-year-old now knows more about type 1 diabetes than most adults, even though she doesn’t have the disease.
Now that they have been on this journey for five years, the family wants to do their part to raise awareness of the disease and its symptoms, which may include increased thirst, frequent urination, extreme hunger, weight loss, fatigue, blurred vision and irritability or unusual behavior.
Type 1 diabetes can lead to heart and blood vessel disease, as well as damage to nerves, kidneys, eyes, feet and skin.
“This is important and something we have to manage, but I want us to manage diabetes. I don’t want diabetes to manage us,” Katie said. “That’s what this technology allows us to do. It allows for the boys to be well-adjusted and live full lives and to feel like they’re in control and not at the mercy of this disease.”
Photos by Mike Dickbernd, IU Health visual journalist, firstname.lastname@example.org