When Lyndsey Golding was four years old, she developed an insatiable thirst that seemingly came out of nowhere. She also had two bedwetting episodes that were totally out of character for her. A family friend who’s a nurse recognized the signs and recommended Lyndsey immediately be tested for diabetes.

“She’ll teach the world about diabetes and anything else if she stands still long enough,” says Lyndsey’s mom, Dina.

“We found the CHoR team at diagnosis,” says Lyndsey’s mom, Dina. “They’ve been wonderful and we’ve never looked back.”

CHoR has the region’s most comprehensive program for children with diabetes and other endocrine disorders. Lyndsey has type 1 diabetes and has been cared for by the program’s multidisciplinary team for the past eight years. The team includes physicians, nurse practitioners, diabetes educators, nurses, dietitians and other specialists who provide medical care, nutrition therapy, education in diabetes management, access to research trials, psychological support and much more. The program currently serves more than 900 children with type 1 diabetes and more than 300 children with type 2 diabetes.

With type 1 diabetes, the body does not produce insulin, a hormone needed to move glucose from the blood stream into cells to be used for energy. This blood glucose (also called “blood sugar”) is a simple sugar that comes from the body breaking down sugars and starches in what a person eats and drinks. High levels of sugar in the bloodstream can cause large blood vessel problems, including life-threatening kidney and heart issues. High blood sugar levels can also delay wound healing, cause changes to small blood vessels in the eyes that can affect vision, and lead to other problems including nerve damage to the hands and feet.

Managing type 1 diabetes centers on monitoring blood glucose levels and injecting insulin as needed. Keeping blood glucose levels stabilized, not too high or too low, is important because in addition to issues related to high blood sugar, having a low level of sugar in the blood – which can be a result of too much insulin – poses health risks as the brain and other organs need glucose to function. Knowing how food affects blood glucose levels and planning an individual’s diet and physical activity accordingly also play significant roles in keeping blood glucose in the proper range.

First steps

Lyndsey spent a few days in the hospital when she was first diagnosed to stabilize her blood glucose levels and so the diabetes team could begin teaching her parents about diabetes and their role in helping manage her condition. In the months that followed, they came to the diabetes center weekly, then monthly, for Lyndsey’s checkups which included further education for her parents. Learning to use specialized equipment for blood sugar monitoring, giving insulin injections and counting carbohydrates (a nutrient in food that breaks down into glucose and needs to be closely monitored in individuals with diabetes) were among the topics they covered. “We spent a lot of time on understanding just how the body processes food and the need for insulin. I remember it being very overwhelming and living in a fog for the first six months,” Dina recalls. “But thankfully, there was always someone only a phone call away. We had a great educational team. We also spent a great deal of time with a nutritionist – which we actually still do.”

Lots of support

Lyndsey now has checkups every three months with a physician or nurse practitioner and other team members as needed. The diabetes team is also available to review her blood glucose numbers regularly and when there is an urgent need to help determine the exact amount of insulin she needs as this can change based on how active she is, what she’s eaten recently and other factors. “Oftentimes we need to make alterations in her dosages along the way so thankfully we can contact her team,” Dina explains.

Lyndsey uses some of the newest technology available for monitoring and for insulin injections. She wears a small device attached to her skin that tracks her glucose levels at all times. The monitor sends readings to Lyndsey’s iPhone and both of her parents’ iPhones every five minutes. She has an insulin pump inserted into her skin through a small needle and taped in place; this computerized pump can deliver a small steady continuous dose of insulin or a larger dose to control the rise in blood glucose after a meal or if monitor readings indicate more insulin is needed.

For additional monitoring and support, Lyndsey has a diabetic service dog named Kaden who goes to school with her and, according to Dina, “pretty much everywhere else she goes.” The option of a service dog was initially introduced to their family by Dr. Gary Francis, chief of endocrinology and metabolism. Kaden uses his sense of smell to determine if Lyndsey’s blood glucose numbers are too high or too low and is trained to alert Lyndsey and her family of an issue. “He will paw at her if her number is out of range,” Dina explains. “And if she does not pay attention like preteens are known for, he will alert me or her dad and will not settle down until she takes care of it. It’s amazing. He has saved her life on more than one occasion.”

Allowing kids to be kids while safely maintaining optimal blood sugar control in their daily lives is an overall goal of the program, according to Suzanne Bona, clinical coordinator, nurse and certified diabetes educator for the diabetes team. The program’s approach involves supporting many aspects of a child’s daily life in regard to diabetes care and management, including strategies for exercise and sports participation, healthy eating, and managing the condition at school.

Dina describes Lyndsey as an active child and all of this support and technology has helped Lyndsey remain so. This level of specialized support and care has also been a comfort to Dina as she has watched her “dynamic, hard headed and wonderful child” continue to thrive, both from a medical standpoint and in the activities she enjoys. “Lyndsey is a ball of light,” she says. “Nothing stops her – she plays any and all sports, but especially loves dancing and basketball. PE is her favorite subject.”

“The best part about CHoR is the constant desire to improve the technology, the family experience, and to cure children and to embrace families,” Dina adds. “It is a holistic approach and it is felt from the moment you step on any campus.”

Coordinating care

Another aspect of CHoR’s approach that’s been particularly helpful for Lyndsey is having multiple specialists working together across disciplines. “All of Lyndsey’s doctors are with CHoR,” Dina says, “and the shared knowledge is invaluable.” Diabetes is an autoimmune disease, which means the body’s immune system attacks healthy cells (specifically the cells in the pancreas that make insulin). Individuals with these types of conditions are at an increased risk for other autoimmune diseases and Lyndsey also has juvenile arthritis, an autoimmune disease that can lead to joint pain, swelling and stiffness. Lyndsey sees a rheumatologist and an orthopaedist for arthritis care and Dina says these specialists often compare notes with her diabetes team which helps ensure Lyndsey can safely stay as active as she likes to be.

Dina has also been pleased with CHoR’s care coordination from a practical standpoint. In addition to having so much to stay on top of with day-to-day management of Lyndsey’s diabetes needs, they have a busy family life (Lyndsey has a younger brother and older sister) and Dina and her husband run a local dance studio, The Dance Company. Over time diabetes can lead to complications (eye problems, kidney issues, nerve damage, etc.) and Lyndsey also has access to appointments with other CHoR specialists for these potential issues. “CHoR stays on top of it and makes appointments for us,” Dina comments. “When we check out of one of our doctor’s appointments, reminders of all of our other upcoming appointments are on our checkout forms. It is wonderful.”

Special connections

For the past few years Lyndsey has attended Camp WannaCure, a week-long day camp for children ages 5 to 11. Through a variety of activities, the camp increases opportunities for children to learn about diabetes in a fun environment and from each other. The camp program is a special way for CHoR’s diabetes team to extend the care they provide beyond the clinic walls, further enabling treatment of the whole child. “Having the staff at CHoR organize and staff a camp for children like my child is beyond words. It gave Lyndsey a chance to be a kid with 24 other amazing kids and for a few short hours I did not have to wonder what her number was or was she ‘counting carbs’ correctly. Camp WannaCure is amazing,” Dina says.

Now 12, and a sixth grader at Oak Knoll Middle School in Hanover County, Lyndsey is on her way to the next phase of life: her teen years and young adulthood. The services provided by her diabetes team will continue to adapt to support Lyndsey’s growing independence in this next phase of her life, and Dina considers the team’s support to be even more critical at this stage – especially the special connection she’s developed with nurse practitioner Shannon Hagan: “Having someone she can trust and be honest with at this stage is critical. Puberty is hard enough and then you add in diabetes. It’s nice to have a provider that is ready to help you walk that path. Nurse practitioner Hagan has been a lifesaver for us.”

As the parent of a child who will need a high level of monitoring and care throughout her life, Dina sees the connections they’ve made at CHoR as critically important in her daughter’s life and as the silver lining to their experience. “I love them all,” she says of Lyndsey’s care team and the kindness they’ve shown during Lyndsey’s medical journey, “from the ladies who greet us at check-in and remember Kaden’s name to April, the only one allowed to take Lyndsey’s blood because she jokes with her and loves on her. Who knew so many diseases could bring so many blessings.”

More About Lyndsey – Fun Facts:

Favorite school subject: PE

Favorite food: All food, even healthy foods, but “carbs” are her first choice

Wants to be: Veterinarian

School: In 6th grade at Oak Knoll Middle School in Hanover County, Va.

Favorite CHoR memory: Camp WannaCure.  It opened up a new Lyndsey.  She loves it!  “This is just an example of how much the CHoR family cares about what they do day in and day out.  It goes further than the clinic or the hospital,” said Dina.

Contributors:

Suzanne Bona, clinical coordinator, nurse and certified diabetes educator, Center for Endocrinology, Diabetes and Metabolism

The “Meet our Calendar Kids” blog series highlights children featured in CHoR’s Tid*Bits calendar. Join our mailing list to receive future issues of the Tid*Bits calendar and newsletters. We hope you’ve enjoyed getting to know Lyndsey, our featured patient for April 2017.