Maintaining Diabetes on the Go: Local 10-Year Old Proves Kids Can Still Have a Normal Life

Diabetes is growing at an epidemic rate in Colorado, where approximately 416,301 people have diabetes. Of these, an estimated 118,000 have diabetes but don’t know it, greatly increasing their health risk. In addition, 1.3 million people have prediabetes with blood glucose levels higher than normal, but not yet high enough to be diagnosed as diabetes. Nationwide, 40,000 people are diagnosed with type 1 diabetes each year, and just under 19,000 children are diagnosed annually with the same illness.

I spoke with Denver area mother of three, Megan Nagel, whose son, Luke (age 10), was diagnosed with type 1 diabetes at the age of just four years old. Before he started kindergarten, Megan noticed that Luke was drinking a lot of water and that his lips were increasingly dry and cracked. Even his knuckles were cracked. She took him to their doctor who wasn’t able to get an accurate read of what Luke’s blood sugar was so they were sent to the Colorado Children’s Hospital.

“I remember I felt sick with a headache and I was a bit scared going to the hospital,” said Luke.

The doctors at Children’s Hospital took Luke to a trauma room because they weren’t sure how sick he was. After more blood and urine tests, they were able to diagnose him with type 1 diabetes. They were then referred to the Barbara Davis Center (BDC), which specializes in type 1 diabetes research and care for children and adults. The center’s medical experts work to find the most effective treatment, prevention and cures for this chronic disease.

Newly diagnosed patients come to the BDC for new-onset classes that provide intensive and comprehensive individual and group training on how to manage the disease. Patients and their parents can have daily contact if necessary, until the parent and family are comfortable with their care and in good control. The first day, the training lasts eight hours.

Megan said, “Luke, my husband, and I were all at the new-onset training the entire day where we learned how to use the insulin pen by practicing on dolls, as well as how much insulin is needed based on the amount of Luke’s food consumption. We learned about counting carbohydrates which is what insulin breaks down. Luke’s body is unable to break down glucose and the training helped all of us better understand why we needed to be vigilant about his care.”

“My pancreas was no longer working in the way it had been, so I learned that I had to have a shot with every single thing I ate, even when it came to snacks,” added Luke.

Type 1 Diabetes

Type 1 diabetes occurs at every age, in people of every race, shape, and size. Different factors, including genetics and some viruses, may contribute to the disease. In type 1 diabetes, the body does not produce insulin, a hormone that it needs to get glucose from the bloodstream into the cells of the body. It breaks down the carbohydrates that are consumed into blood glucose, also known as blood sugar, which is used for energy. With the help of insulin therapy and other treatments, individuals have the potential to live long and healthy lives. Despite active research, type 1 diabetes has no cure. Treatment focuses on managing blood sugar levels with insulin, diet, and lifestyle to prevent complications. 

It’s important for parents to understand the symptoms of type 1 diabetes and look out for these in their children:

  • Increased thirst
  • Frequent urination
  • Bed-wetting in children who previously didn’t wet the bed during the night
  • Extreme hunger
  • Unintended weight loss
  • Irritability and other mood changes
  • Fatigue and weakness
  • Blurred vision

What Can Happen If Not Treated

Untreated, those with type 1 diabetes can go into diabetic ketoacidosis (DKA) which means the organs begin to shut down over time and lead to circulation and sight complications. That’s why it’s crucial to maintain healthy glucose levels.

The Emotion Toll

When Megan learned of Luke’s illness, it was brand new to her, and as a chronic disease, she went home and felt devastated. She relied on prayer and the support of her family. She said some friends reached out to her individually but she didn’t need a support group at that time. She just needed time to process the diagnosis in a quiet way. She became very focused, and realized she could only care about her family at the time.

Megan remembers sitting down and sifting through all her cook books page by page, breaking down every little recipe component using her calculator so she would know how much insulin to give Luke with each meal and prepare the best foods possible for Luke. Over time, it began getting easier to make meals for the entire family that were also suitable for Luke.

“I also knew what despair felt like because my child was sick and I knew I had to keep him alive in a different way than before the diagnosis,” said Megan. “I knew I would fight every minute to do so.”

She said the despair lasted for three months, at which time Luke was put on an Animas pump, which is no longer available in the United States. Previously, he’d have shots several times a day and going from those to a pump felt great, but Luke was relying on a machine, so naturally, Megan began to get less sleep because she woke up several times nightly worried about Luke’s blood sugar levels and to make sure he was okay.

“Pumps change people’s lives, and eventually we changed to the Medtronic MiniMed™ 670G insulin pump system,” said Megan. “The system combines a smart pump and a continuous glucose monitor (CGM), which is about the size of a quarter, which Luke wears on his arm. The CGM sends data about Luke’s blood sugar levels to the pump automatically, and then the pump delivers the appropriate amount of insulin into him. I love it because with this latest technology I’m comforted by the fact that he is getting readings and appropriate amounts of insulin every five minutes based on whether he’s high or low.”  

As he has grown older, and with the Medtronic system, Megan is experiencing more peace because Luke is able to recognize what a low and a high blood sugar level feel like.

“When I’m low, I feel nervous, dizzy and once, when I held a piece of paper, I noticed it was shaking,” said Luke. “When I’m at a high level, I get headaches, feel angry and edgy and my Mom says I fixate on being held and need a lot of reassurance.”

According to Megan, before starting on the Medtronic pump, Luke had an A1C of 8.8, and now, since starting on the MiniMed 670G system, Luke is down to a 7.0, which is a significant improvement.

“I worry about internal damage, so it’s important for the entire family to help Luke do what keeps him healthy,” said Megan. “Good management will extend throughout his life. Now making meals is easy because his pump does so much of the work. We check it with each meal, and calibrate as needed and it frees him up to have a more normal life.”

Management at School and at Home

Early on with the older Animas pump, Luke missed a great deal of school, but now he’s able to attend more hours of the school day because of his Medtronic pump. At his school, every teacher knows what to do in the event Luke experiences a low or a high.

“Sometimes I’ve felt bad that I’ve had to miss school, even if it’s just for 15 minutes,” said Luke. “Now I still do what other kids do. I like music. I’m playing the drums and taking guitar lessons, and I’m in a book club, where I like to read general fiction and fantasy. I feel happy because it seems like by the time I get to college I won’t have worry as much because the pump has made management of insulin intake so easy.”

Despite all of his challenges, Luke won a school award because he works hard to stay on track and make up his homework when needed.

Megan said that Luke’s two older brothers understand the disease and how it needs to be managed.

“Initially, my oldest son couldn’t be in the room when we gave Luke his shots because he found it upsetting, but my middle son didn’t seem to be as affected and now is able and willing to do Luke’s in-settings and care for him if we’re not at home, which is liberating,” added Megan.

Advice to Parents

Megan believes that parents need to listen to their inner wisdom when dealing with children who have type 1 diabetes. She said some do well with support groups and some do not. It’s important for parents to take care of themselves, so they have the energy to do the same for their kids. Also, they should remember that this is a chronic, rather than a terminal disease and to be grateful that it’s possible to manage for life.

“I just want families to know that they can survive this,” said Megan. “We ski; we hike; we travel. Sure, we have to plan it out carefully but it’s all okay because they can live a healthy life when the disease is managed and can do everything that everyone else is doing. As long as we believe this, everyone can thrive and experience a fulfilling life.”

For more information and statistics about type 1 diabetes, visit the following websites:

For Pediatric statistics: https://archive.childrenwithdiabetes.com/clinic/numbers.htm

·        For Colorado Statistics: 

http://main.diabetes.org/dorg/PDFs/Advocacy/burden-of-diabetes/colorado.pdf

https://www.colorado.gov/pacific/sites/default/files/DC_Factsheet_Facts_For_Action_Diabetes_In_Colorado_November_2015.pdf

https://www.colorado.gov/pacific/sites/default/files/DC_Factsheet_Facts_For_Action_Diabetes_In_Colorado_November_2015.pdf

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