Khloe Smith

Even at the young age of six, Khloe knew something was wrong. She remembers feeling confused often. Thirsty. Grouchy. Not herself at all.

Khloe’s parents noticed it, too. “She was extremely thirsty and not acting like herself,” her mother, Brandy, recalled. They had been on a family vacation when they became increasingly concerned. “By the time we got in the car to go home, we knew something was not right.”

A visit to Khloe’s primary care doctor the next day confirmed her parents’ concerns. Her doctor pricked her finger to take some blood. Within minutes, he gave them the devastating news: She had Type 1 diabetes, and her glucose (blood sugar) was extremely high. Khloe’s parents needed to admit her to WVU Medicine Golisano Children’s Hospital immediately.

What is Type 1 Diabetes?

When a person has Type 1 diabetes, it means their pancreas doesn’t make insulin or makes very little insulin. Insulin’s job is to help glucose enter cells so it can be used for energy. Without insulin, blood sugar can't get into cells. Instead, it builds up in the bloodstream, leading to high blood sugar. This condition damages the body and causes a range of symptoms and complications.

“It’s an autoimmune disease,” Brian Ely, MD, pediatric endocrinologist, said. “Where, instead of fighting viruses and bacteria, the body's immune system gets confused and targets the pancreas. It specifically targets the parts of the pancreas that are responsible for making insulin.”

Type 1 diabetes used to be called juvenile or insulin-dependent diabetes. While it often happens in children, teens, and young adults, it can occur at any age. It’s less common than Type 2 diabetes, but no one knows how to prevent it.

Still, parents and caregivers can help successfully manage Type 1 diabetes in children when they:

• Become educated on self-management
• Follow the doctor’s recommendations for living a healthy lifestyle
• Get medical and emotional support  
• Manage their blood sugar
• Schedule regular health checkups

“A Whole New World”

Those early days filled the family with anxiety. Neither parent knew anyone who had Type 1 diabetes and had no idea what was going to happen next. For them, “It was a whole new world.”

“It felt like bringing home a newborn,” Brandy said. “What was hardest was being afraid to feed her. Not knowing what it would do to her blood sugar. At first, we had no technology to tell us what was going on with her. You’d have to guess.”

Khloe’s father, Shawn, agreed. “It was a whirlwind of a time of trying to figure everything out. At that point, we knew nothing about diabetes. No clue. We thought, maybe take a shot a day, you'll be okay.”

For Khloe, the change was nothing short of dramatic. “At first I thought the only thing I've ever really heard about diabetes was you don't get any sugar,” she said. “But I do get to have sugar. I had to change my eating habits and pay more attention to what I was eating.”

Another challenge was getting insulin injections and finger pricks to check her sugar. “I had to check my blood sugar each day,” she said, “which was different. I'd never been around needles as much as I was until I got the diagnosis. I had to take insulin injections basically each time I adjusted carbs, which is in every single food.

“So, at each meal,” she continued, “I was taking a shot. And each morning, I took a shot to balance me throughout the day. And any time my blood sugar was higher than it should be, I was taking a shot. That can be five-to -0 needles a day for a 6-year-old. At first, little Khloe was very scared of needles. Now, it's like it's a daily thing, so I'm used to it.”

Technology is Changing Diabetes Care

Khloe’s diagnosis was more than 10 years ago. Then, there wasn’t the same kind of technology that told the family what was happening with Khloe’s glucose (sugar) levels. Brandy pointed out, “In the beginning, it was a finger prick … a snapshot. Just a small blip of what her blood sugar would be.”

Khloe recalls that after she was first diagnosed, she was finger-sticking each day. That means she would prick her finger and place a drop of blood on a meter to read her glucose level. But today’s technology has given Khloe and her family peace of mind. Khloe’s father confirmed, “Now we can see what her blood sugar is doing at any time,” said Khloe’s father. “And because of the different changes in technology, now we go to a scanner.”

Known as a continuous glucose monitor (CGM), the “scanner” uses a wearable sensor to track glucose levels in real time. It sends data to a smartphone app or receiver, which eliminates the need for frequent, traditional finger-stick blood tests.

“Just recently, she was at camp all week, and I can tell you what her sugar levels were the whole time without having been there with her,” Shawn said.

Khloe and her parents feel that because of technology, they always know what's happening with her sugar levels. And that’s a much more comfortable feeling.

“With the technology we’ve discovered, I have a device that can read my blood sugars constantly,” Khloe explained. “It can alert whenever my sugar is high or low. So, it's not like a middle-of-the-night, scary thing, where we don't know what's happening. Now we always know what's happening.”

“It Gets Better If You Keep Going”

Now, 16, Khloe goes to WVU Medicine Golisano Children’s Hospital every six months for a checkup and to see one of her doctors. They’ll talk about what’s been happening physically and mentally with Khloe, and if there’s anything they need to change. She’ll also go to the lab for blood work.

She and her family feel grateful for and comfortable with the care she receives at the hospital. “Everyone here is so welcoming,” Khloe said. “All of the doctors are here to help me with my diagnosis, but they're also here to form a connection. And they're here to make sure not only my physical health is okay, but my mental health and everything I'm dealing with is doing okay. The doctors are very sweet, caring people who want what's best for me.”

Khloe stays busy with school and her interests in theater and choir. About the diabetes, she said, “Of course it's there, and sometimes it might get in the way a little bit because it's always going to be there.”

But she also has enough experience to share this advice with other kids who may have been diagnosed with Type 1 diabetes. “It may feel really confusing … kind of like you're stuck in a little box right now, and you're like, what is happening? But it gets better if you keep going. You have to put in the effort, keep trying to make yourself feel good, and keep cooperating with everything, and you will get to a better place. It's never going to be perfect, but you will get to a better place.”