Type 1 Diabetes: Learning to Manage a Lifelong Condition

Type 1 diabetes (T1D) is a chronic autoimmune condition that attacks the insulin-making cells in the pancreas. Insulin helps blood sugar enter the cells in your body for use as energy, according to the Centers for Disease Control (CDC). Without insulin, blood sugar cannot penetrate your cells. Instead, it builds up in your bloodstream. Uncontrolled high blood sugar can damage many parts of your body, including your heart and blood vessels, eyes, kidneys, nerves, gums and gastrointestinal tract. 

Once called juvenile diabetes, T1D usually begins in childhood or adolescence, but it can actually show up at any age. While Type 2 diabetes (T2D) tends to be lifestyle-related and develops over time, T1D is believed to be genetic in origin. You can’t get it from eating too many sweets.  

If your child has T1D—especially a young child—you’ll be handling diabetes care on a day-to-day basis, from preparing healthy foods to giving insulin injections and checking for low or high blood sugar. You’ll also need to stay in close contact with your child’s health-care team. They will help you understand the treatment plan and how to help your child stay safe and healthy. 

When daily life is the biggest challenge of all 

First comes the diagnosis, and then comes the rest of your life, says Dr. Zoltan Antal, Chief of Pediatric Endocrinology at Weill Cornell Medicine and an assistant attending pediatrician at NewYork-Presbyterian’s Phyllis and David Komansky Center for Children’s Health. 

At first, managing the disease can be exhausting, both physically and mentally, he says. “Once a child or teen adjusts to all the glucose testing and insulin injections—and they always do, often better than adults—the next challenge is to adopt strategies for incorporating T1D care into daily life. 

“Just as challenging,” he continues, “is the need to gain acceptance and understanding from your friends. That will take time, but you will soon become an excellent peer educator as well as an advocate for your needs and an expert in diabetes management and self-care.”  

One thing is certain: Once a child or adolescent is diagnosed with Type 1 diabetes, that young person’s life will never be the same.  

All the things: A short list  

It would require a book to list every aspect of daily life affected by T1D, so let’s get started with the following short list of everyday activities that require special attention. 

Dr. Antal’s short answer to that question is: Have a plan. And the best way to create one is to sit down with your child or teen and ask for their input. Planning is a family affair. 

“It’s not a question of ‘well, now that you have diabetes, we all need to just accept that this is the new normal.’ It’s more like ‘how can we incorporate diabetes management into the things you do or want to do?’ Because there is always a way.  

“As a family, anticipate potential problems and make a plan that involves school, friends, family members, your child’s medical team and whatever advocacy groups you choose to join,” he adds. “That will be key to your child’s ability to live as fully, happily and safely as possible.” 

What if there is inadequate support at school? 

Schools do not always have nurses, and even if they do, nurses aren’t always trained to use the latest diabetes devices, Dr. Antal explains. Even more frustrating, legal and administrative challenges make a child’s day tougher.  

“You may be forced to go to the nurse’s office to have your blood sugar checked before lunch and get an insulin injection, and you’ll arrive late to the lunchroom every day. That means you’ll miss out on lunch-hour socialization and have less time to eat. And if your school doesn’t have a nurse at all, you’ll need to miss school trips.” 

Although there is no easy way to navigate these issues, you can anticipate them and revisit the plan. “The child with T1D should always be involved. It’s their life and their diagnosis, after all. Children always feel empowered when they’re engaged in decision-making. And sometimes, they even come up with the best solutions.”  

You should also become familiar with laws that protect people with medical conditions from being discriminated against. It is perfectly acceptable for a child to check their blood sugar in the classroom if the parent, child and care team agree they can do so independently. Schools should be open to these negotiations.  

Mental health screening and care 

Once the initial shock of the diagnosis wears off, the idea of life with a chronic condition sets in, says Dr. Antal. 

As children grow, there is often a natural increase in the risk of anxiety and regression—a response to stress in which a child or adolescent starts to behave in a younger, age-inappropriate way. Having a chronic illness may magnify these risks. 

“If mental health is not addressed early, and these issues are not identified and managed before they become severe,” Dr. Antal says, “we often end up having to manage more dangerous behaviors down the road such as cutting, intentional insulin omission or overdosing or outright suicidality. These risks can all be mitigated with early mental health screening and care. 

“Children thrive when they have an outlet for their emotional and psychological issues on a regular basis,” he continues. “Even family therapy should be started early, for those fortunate enough to have access to mental health care.” 

And for those who lack such access, engaging in advocacy can be an empowering and health-promoting way to go, he says. There’s a lot you can learn from those already navigating T1D. 

Join a community support group through the Juvenile Diabetes Research Foundation (JDRF). Participate in annual diabetes walks. And schedule parent-child “coffee hours” to check in and see how everyone is doing. 

Tools, tech and resources 

An insulin pump can help patients avoid numerous insulin injections. Small, durable and easy to use, the pump can be regulated via a phone app or small device.  

A wearable continuous glucose monitor sends out blood sugar levels regularly to your phone app, eliminating the need for daily finger sticks. And it can warn you in advance of an impending low or high blood sugar level so that you can deal with either of these before you start feeling sick. 

Additionally, Dr. Antal advises his young patients and their families to take advantage of chat groups, especially those involving school staff and teachers, for ongoing daytime communication.  

“And plan ahead,” he reiterates. “Everything takes longer when you factor in diabetes. 

“Tackle diabetes as a family. Count carbs together. Everyone can benefit from healthy eating. Maybe only one child gets insulin, but everyone in the family can adopt the same habits so it won’t feel as lonely for the child with T1D.”  

To make an appointment with a pediatric endocrinologist at Weill Cornell, visit https://weillcornell.org/pedsendo