Where to begin when your child is diagnosed with type 1 diabetes

When your child is diagnosed with type 1 diabetes, it’s normal to feel conflicting emotions and to have a lot of questions. Life with type 1 diabetes takes some getting used to, and the transition can be challenging for all involved. Allow time and patience for your family to adjust and know that you can reach out for support when you need it.

While type 2 diabetes is more common, nearly 2 million Americans live with type 1 diabetes, and 200,000 of them are currently under 20 years of age. A type 1 diabetes diagnosis may seem isolating, but you’re not alone. Read on to find out more information, explore resources and join a robust, supportive community.

How to explain type 1 diabetes to your child

While your child’s doctor can provide answers at your diagnostic appointment, you might not have questions until your child starts treatment at home. Your child will likely start having questions about their diabetes as well. How you choose to explain type 1 diabetes to your child is up to you, and will depend on how old your child is at the time of their diagnosis. Be honest with them but be aware of how much they can handle. Older children are able to process more information and take on more responsibility.

If you’re unsure how to explain the condition, start with the basics: The food we eat supplies our bodies with a form of sugar called glucose. We need glucose for energy, and our bodies transport glucose to different areas through the bloodstream. Insulin, a type of hormone made by the pancreas, helps our bodies use glucose.

Sometimes, the immune system attacks the pancreas by mistake. After a few months or years of this, the pancreas can’t make insulin anymore. Without insulin, glucose becomes stuck in the bloodstream. This is when the symptoms of type 1 diabetes start to appear.

Causes of type 1 diabetes

Some parents feel guilt or shame when their child is diagnosed with type 1 diabetes. Know that there is nothing you could have done to cause or prevent type 1 diabetes. No one has any control over why and when type 1 diabetes occurs. Your child likely had the genes, and then something in their environment activated them. Doctors and researchers aren’t exactly sure what triggers the immune response that attacks the pancreas, but it could be a virus.

Type 1 diabetes can occur at any age, but most children are diagnosed within two age ranges – when they are between 4-7 years old and 10-14 years old.

Chances of passing type 1 diabetes to a child

Parents can pass type 1 diabetes to their children, but it’s less common than people might think. Only 20% of people with type 1 diabetes have a history of the condition in their families. Below are some of the probabilities of how often children inherit type 1 diabetes:

The child of a father with type 1 diabetes carries a 1-in-17 (about 5%) risk of the disease.
The child born to a mother younger than 25 with type 1 diabetes carries a 1-in-25 (4%) risk of the disease. Children born to a mother older than 25 with type 1 diabetes carry a 1-in-100 (1%) risk.
The child of parents who both have type 1 diabetes carries between a 1-in-10 (10%) and a 1-in-14 (about 7%) risk.
The child of a parent who was diagnosed with type 1 diabetes before age 11 has double the risk of developing the disease.

How common is type 1 diabetes in children?

According to the Centers for Disease Control and Prevention (CDC), about 5-10% of all people with diabetes in the U.S. have type 1. The other 90-95% have type 2 diabetes.

Do children outgrow type 1 diabetes?

Unfortunately, no. Type 1 diabetes is a lifelong condition, currently without a cure. Once those insulin-making cells of the pancreas are destroyed, they never come back. Children with type 1 diabetes will need to take insulin for the rest of their lives, but insulin delivery methods are always improving.

Treatment for type 1 diabetes

Managing your child’s diabetes can be complex, but it’s important to treat children with type 1 diabetes just like other children. There are plenty of options for treatment, and your family can try multiple different methods until you find one that fits best.

An easy way to remember all parts of diabetes treatment is to think of T.I.E.:

Test. Test blood glucose at least five times a day: before meals, before an afternoon snack and at bedtime. Eventually, your child can use a continuous glucose monitor device to keep track of their blood glucose, but it’s not a good idea to start using one right away after diagnosis. Diabetes technology, while constantly improving, is not perfect. In case of device malfunction, you and your child have to know how to test manually.
Insulin. Children with type 1 diabetes have to take insulin because their pancreas can’t make it anymore. Insulin comes in different types and can be fast-acting, intermediate-acting and long-acting. Your child should take fast-acting insulin multiple times a day before meals. Long-acting insulin can be taken at night or in the morning, typically once a day.
Eat. Help your child learn healthy eating habits early on. Cook meals with whole foods, pack them a healthy lunch and always have healthy snacks on hand. You and your child (depending on their age) may want to practice carbohydrate counting, which is when you count the gram amount of carbohydrates in the foods they eat and match that to the insulin dose.

Diabetes care team for type 1 diabetes

Your child with diabetes will still do what all children do: grow. And their personality, interests, activities and schedule will shift as they get older. Their care plan needs to grow with them, and that will involve some changes. When you have a strong diabetes care team, making these changes is easy. Your child’s diabetes care team will include:

Pediatric endocrinologist: A pediatric endocrinologist is a doctor who specializes in caring for children with diabetes. They will help create your child’s diabetes care plan and modify it as time passes. That’s why it’s important that your child sees their pediatric endocrinologist every three months.
Pediatrician or family medicine doctor: Your child will still need to see a primary care doctor to monitor other aspects of their health at annual physicals. They will often coordinate with other members of your diabetes care team.
Certified diabetes care and education specialists (CDCES): Formerly known as certified diabetes educators, these individuals receive special training to help teach patients with diabetes how to manage their condition. Many clinicians across specialties choose to become diabetes care and education specialists, but they are often nurses and dietitians.
School nurse: Children spend most of their waking hours at school, so it’s a good idea to connect with the nurse at your child’s school to review your child’s care. The American Diabetes Association provides a form called the Diabetes Medical Management Plan, to be filled out by you and your child’s doctor and kept at school. The form details all aspects of your child’s daily schedule, their medical history and their current diabetes care plan.
Mental health specialist: Learning to manage type 1 diabetes can be a stressful, ever-evolving task. It’s perfectly normal for your child or any member of your family to need to talk to a mental health specialist. These services can be very beneficial. You, your child or your whole family can choose to speak with a social worker, therapist or psychologist.

Remember that your child and your family are also important – maybe the most important – members of this team.

Diet for a child with type 1 diabetes

Diet can be a challenging aspect of your child’s diabetes care plan. There’s nothing your child can’t eat, but it’s important to be aware of certain foods, rich in carbohydrates and sugar, that can create a spike in their glucose level. These foods include:

Sugary treats like pastries, cookies and candy
Refined grains like white bread, pasta and rice
Fruit with a lot of naturally occurring sugar, like bananas, mangos, pineapple and watermelon
Vegetables high in starch like potatoes and corn

Your child can eat these foods, but they will have to take more insulin to compensate. Because of their effect on blood sugar, these foods have something called a high glycemic index. Foods with a low glycemic index still have glucose, but the body receives it at a slower rate, so they don’t have as much of an effect on blood sugar levels.

The glycemic index should be just one tool in your healthy eating toolbox, as it’s not a perfect measurement. It doesn’t take other nutritional factors into account, and it only measures food with carbohydrates. There are plenty of foods we consider “unhealthy” with a low glycemic index, and plenty of “healthy” foods with a high glycemic index.

Independence for children with type 1 diabetes

Children can handle different diabetes care tasks depending on their age, but they should feel involved in their care from a very young age. While children 3-5 years of age are too young to manage many aspects of their condition, they can still help with small tasks. Have them retrieve their own blood sugar meter or gather the supplies for an insulin injection. This early involvement can help your child learn a sense of responsibility and ownership over their health, which they can carry with them as they get older.

Children can usually start checking their own blood sugar levels between ages 6-9 and start giving themselves their own insulin shots around age 10. Every child is different, and some children are not ready by this time. That’s okay. No one knows your child better than you do, so trust your instinct when it comes to how much they can handle, and how quickly.

A common mistake is pushing your child to take too much responsibility before they are ready. Studies show diabetes management is more successful when parents stay involved in their child’s diabetes care. When children become teenagers, they can start to show some resistance or forgetfulness around their diabetes care tasks. This is a period when they may need more frequent reminders and check-ins from you.

How you speak to your child is important, and even well-meaning comments can be hurtful. Here are some tips on what not to say to someone with diabetes.

Can a child with type 1 diabetes live a normal life?

Children with type 1 diabetes may lead lives that look slightly different from those of their peers, but they can be just as rich and fulfilling. They can still do all the things kids love to do, like playing on sports teams, being in plays or musicals, and having sleepovers. Diabetes will not keep them from learning to drive or leaving for college. Their participation in these activities will take more consideration and preparation, but it’s important for their social and emotional well-being that they be allowed to participate anyway.

It may help your child to learn about all the people with type 1 diabetes who have gone on to accomplish amazing things. You can tell them about famous musicians like Joe Jonas (diagnosed at 13), Olympic athletes like swimmer Gary Hall Jr. (diagnosed at age 24), or public officials like Supreme Court Justice Sonia Sotomayor (diagnosed at age 7).

Effectively managing type 1 diabetes doesn’t require perfection, only effort. Your child’s blood sugar level may not always be exactly where you want it, but it’s about finding a balance that works for them, and one that lets them be a kid.

Finding more diabetes resources

Learning how to navigate life with diabetes can be challenging. But there are lots of organizations out there that can help – so take advantage of them! They can get you connected to support groups and special camps for children with diabetes. They can send you free care kits and diabetes-friendly recipes. And they can arm you with information to answer the questions (and dispel the myths) you are bound to get from friends and family. Check out what these four organizations have to offer: