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Emily will never forget one hectic day in 2018: It started with taking her younger sons to urgent care for a rash and an earache. It ended at Children's Health℠ Emergency Department with a life-changing diagnosis for her oldest son, Eli.
"I had all three boys with me at urgent care and the provider noticed that Eli drank an entire large water bottle in just a few minutes," Emily said.
The doctor asked if that was normal. It wasn't. Emily, a nurse, knew exactly why the doctor was asking.
"Increased thirst is a common symptom of high blood sugar in people with type 1 diabetes. We did a quick finger stick and his blood sugar was off the charts. We immediately left for Children's," she said.
A nurse Emily had trained 15 years earlier, greeted her family when they got to the Emergency Department.
"I've been a nurse at Children's Health for the majority of my career and I've done a lot of nurse education. My husband Nick is a nurse practitioner in orthopedics. Together, we've been a part of the Children's Health team for 36 years," Emily said. "But all of the sudden, I was the mom whose head was spinning and stomach was in knots, terrified for my kid."
Even as the nurse told Emily that Eli's blood sugar was so high it was beyond what the glucose monitor could measure, she struggled to comprehend that her child had diabetes. Type 1 diabetes is usually diagnosed in children and happens when the immune system mistakenly attacks the pancreas. It's different from type 2 diabetes, which is usually diagnosed in adults and is generally due to lifestyle factors like excess weight and lack of exercise.
"Eli was now one of the millions of people whose pancreas stops working and we still don't fully understand why," she said. "As a parent, I've never felt so vulnerable. It took me a while to grasp that my 8-year-old was just handed this lifelong, chronic condition and would be dependent on insulin and medical care for the rest of his life."
Empowering kids with T1D to lead their own care
Emily remembers how well Eli took the diagnosis. Right away, the Pediatric Diabetes Program care team empowered Eli to start learning about his health.
"We were in the hospital for three days and by the time we left, Eli was confidently testing his blood sugar and giving himself insulin shots," Emily said. "He took the diagnosis better than his mom and dad!"
Although Eli's parents had cared for kids across many specialties, neither had worked in endocrinology. Now in the parent's seat, they started to build Eli's core diabetes team at home.
"There's a lot to learn in those first few months, like that my body can't make insulin anymore. It's a bit overwhelming. You can't go back to life before type 1, but it gets easier," Eli said.
Soumya Adhikari, M.D., endocrinologist at Children's Health and Associate Professor at UT Southwestern leads Eli's care team. His parents are grateful for how Dr. Adhikari has prepared them for every medical situation and empowered Eli to take the lead in his own care.
"Dr. Adhikari and the diabetic educators have coached us to know where and when to step back and have confidence in Eli to take responsibility to manage his diabetes himself," Emily said.
Within six months of his diagnosis, Eli was able to start using a continuous glucose monitor (CGM) and insulin pump. Both made it easier to monitor his blood sugar throughout the school day and while he was playing sports.
"I'm at an age where my body is changing and growing really fast. So I have to pay even more attention to my blood sugar and staying hydrated, especially when I exercise," Eli said. "Change can happen really fast, and all of a sudden my sugar can be really low, which is dangerous."
Tools to manage type 1 diabetes
Eli and his parents are grateful to have the support of tools and technology to help manage his diabetes, including the Diabetes Advisor App developed by Dr. Adhikari. Challenging enough on routine days, type 1 diabetes can be especially troublesome on days children get sick with other common illnesses. Dr. Adhikari designed the app to help patients manage their food intake and hydration to prevent big blood sugar swings on sick days.
"When I downloaded it, I told the app how much insulin I usually take through my pump," Eli said. "Then, if I ever get sick, I can put in my blood sugar readings and ketone levels, and it will tell me how much food, water and insulin I need to take so I don't go into DKA (diabetic ketoacidosis)."
The app has made Eli's parents feel like they have a 24-hour connection to the Children's Health team.
"It gives us peace of mind that Eli has a resource available to him wherever he is, especially when we can't be with him," Emily said. "But it's also helped us have more useful conversations when we are at the clinic. Between the Children's app and his CGM app, we can look at Eli's blood sugar trends with Dr. Adhikari to identify anything that needs to be adjusted."
Diabetes is a team sport
Eli's family has learned that having type 1 diabetes means not only educating your immediate family, but making sure you have a support system in every part of life.
"My teammates, Enzo and Nic, are always asking me if I've checked my blood sugar or if I need to eat something or drink juice to raise my blood sugar. They are my best friends, and they understand that it's important for me to take care of myself," Eli says.
The Clinical Diabetic Educators at Children's Health have been a great resource for educating Eli's teachers, baseball coach and anyone else who needs to know what to do if Eli needs medical care.
"A lot of people don't understand how serious type 1 diabetes is," Emily said. "The team at Children's has built meaningful programs to ensure every child with type 1 diabetes can be safe in any environment. Ensuring Eli is surrounded by friends, teachers and coaches who know about type 1 diabetes means Eli hasn't missed out on anything because of the disease. Research and work to build new tools have done wonders for patients' quality of life. In combination with the care we receive through the Children's Health Diabetes Program, Eli can live his best life."
Learn more
Children's Health is home to one of the largest pediatric diabetes programs in the country. Our patient-focused programs have been recognized for excellence, and US News & World Report has again ranked us among the Best Children's Hospitals – Diabetes and Endocrinology. Learn more about our Pediatric Diabetes Program.
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