Diabetes is a life-changing diagnosis for any person and their family. When a child is diagnosed with diabetes, it can feel overwhelming as a parent. Here’s what to know about type 1 diabetes in children.
What are the different types of diabetes in children?
The two types of diabetes children can have are type 1 diabetes (formerly known as Juvenile Diabetes) and type 2 diabetes (formerly known as Adult-Onset Diabetes). Children are more likely to be diagnosed with type 1, but there is a growing awareness that children can have type 2. Both diagnoses have been increasing over the last two decades, but we’ll focus here on type 1.
What causes type 1 diabetes?
In type 1 diabetes, an organ called the pancreas does not make insulin. Insulin is a hormone that helps glucose (the type of sugar your body uses) get into your cells to give them energy. Insulin works like a key that opens the door to your body’s cells to let the glucose inside them. Without insulin, too much glucose stays in the blood. Usually, after eating, the amount of glucose in the blood goes up (your blood sugar level rises). In response, the pancreas sends insulin into the bloodstream.
People with type 1 diabetes can not make insulin because their immune system attacks and destroys their own pancreatic cells responsible for making insulin. Type 1 diabetes is called an autoimmune disease because your immune system (designed to attack foreign bacteria or viruses) attacks itself – in this case, the pancreas. Doctors and scientists don’t yet know for sure why this happens in some children and not others, although there are genes that make the risk higher. Type 1 diabetes can’t be prevented and isn’t caused by what kids eat or how active they are.
What are the signs and symptoms of type 1 diabetes in children and teens?
As the pancreas stops making insulin, symptoms of type 1 will begin to appear. Left untreated, they are life-threatening. Here are some signs and symptoms:
- Needing to pee frequently
- Wetting the bed after having been dry at night
- Increased thirst and drinking more than usual
- Feeling tired
- Unintentional weight loss
- Irritability or behavior changes
- Fruity-smelling breath
How is type 1 diabetes diagnosed?
Healthcare providers use a blood test that measures the amount of sugar (glucose) in the blood. When these results are very high, they’ll run more lab tests. Often those with type 1 diabetes are very sick when they are first diagnosed. They may need to spend time in a hospital having their blood sugar and hydration status stabilized. This allows children to safely recover and receive life-saving insulin. It also helps parents learn how to check their child’s blood sugar, count carbohydrates for meals, and give them insulin before taking them home. Type 1 diabetics will need insulin every day, several times a day for their entire lives.
Once diagnosed, your child’s pediatric provider will most likely refer you to a pediatric endocrinologist, a doctor specially trained to care for children with diabetes. They usually work as part of a diabetes care team that may include diabetes educators, nurses, nurse practitioners, dieticians, nutritionists, eye doctors, and mental health providers.
What are the treatments for type 1 diabetes?
Although there is no cure for diabetes at this time, children with this disease can lead normal lives, but it can be challenging for parents to manage the nutritional needs of growing children, who may also be picky eaters! Blood sugar can be hard to keep in control at first because of your child’s rapid growth, unpredictable appetite, and energy levels. When diabetes is well-controlled it means that blood sugars remain relatively constant, without falling too low (called hypoglycemia) or too high (hyperglycemia). Keeping blood sugar levels close to normal most of the time can dramatically reduce the risk of many short and long-term complications.
The goal of diabetes treatment is to keep your child’s blood sugar within a target range. Your child’s diabetes care team will let you know your child’s blood sugar target range. This range may change as your child grows and changes. To treat their type 1 diabetes, your child will need to:
- Take insulin daily (by injection or an insulin pump)
- Count carbohydrates (sugar, starch, or fiber)
- Wear a continuous glucose monitoring device or check blood sugar with a finger stick multiple times per day
- Get regular physical activity
Usually, you or your child will test their blood glucose before every meal, at bedtime, and occasionally during the middle of the night. But, you may need to check it more often if your child doesn’t have a continuous glucose monitor.
What are the health risks of type 1 diabetes?
Type 1 diabetes is a chronic condition – meaning that your child will be living with diabetes for their lifetime unless scientists find a cure. Not treating type 1 diabetes can cause both short-term (acute) health risks and longer-term (chronic) health problems.
In the short term, uncontrolled type 1 diabetes can cause high blood sugar levels (hyperglycemia). Signs and symptoms of hyperglycemia in children are urinating (peeing a lot), feeling thirsty or having a dry mouth, blurred vision, and feeling tired, weak, or nauseous.
Without insulin delivering sugar to your child’s cells, their body may start to break down fats for energy instead. Breaking down fats produces ketones, resulting in a serious condition called ketoacidosis. Ketoacidosis needs to be treated with intravenous (medication through your child’s veins) insulin and fluids right away at the hospital. If your child is not treated right away, they are at risk for diabetic coma. Very high ketone levels in the blood can trigger brain swelling. Children can lose consciousness and go into a diabetic coma which can lead to death.
In the short term, if your child takes too much insulin, is more active than usual, or waits too long between meals, their blood sugar levels may fall too low (called hypoglycemia). Hypoglycemia can also be life-threatening. Common signs of hypoglycemia are pale skin, shakiness, hunger, sweating, difficulty concentrating or confusion, dizziness or lightheadedness, loss of coordination, and slurred speech. If your child’s blood sugar levels are dangerously low (their pump or your doctor will tell you their danger range), they need treatment immediately. Treatment involves getting them to eat high-sugar foods, drinks, or take medication as soon as possible.
High blood glucose levels over time can damage your child’s health and organ systems if not well controlled. Adults with poorly controlled type 1 diabetes have higher rates of heart disease, heart attacks, kidney disease, blindness, chronic nerve pain, skin and foot problems, tooth and gum issues, and osteoporosis (bone thinning).
How can I support my child with type 1 diabetes?
Learning all you can about diabetes will help you better advocate for your child and teach the other people in your child’s life (teachers, grandparents, friends’ parents, coaches) how to help keep them safe and healthy.
Adjusting to a new lifestyle of frequent appointments, carb counting, and emergency medication takes a village. You don’t have to take care of your child’s diabetes alone. Build a support team that will help you and your child so that you can minimize stress. Take comfort and direction from your child’s diabetes care plan, developed collaboratively with your diabetes care team. Scheduling regular visits with your child’s diabetes care professionals will help your child stay healthy as they grow and develop into an adult. Look for access through a patient portal or advocate so that you can get time-sensitive support when you need it. Discuss overnights with a partner so that you can alternate nights of interrupted sleep.
Your diabetes care team can refer you to family support groups so you can learn from other parents and caregivers in a similar situation to yours. Your child may also feel better if they can meet and get to know other peers with diabetes. It can be
reassuring for children to see that they are not the only ones with diabetes.
As your child becomes more independent, you can help them learn to take more responsibility for caring for their diabetes. For example, children above the age of seven may be able to start giving themselves insulin injections with supervision. They can also check their blood several times per day, using test strips and a blood sugar meter. Continuous monitoring and pumps are even easier to use and can be set up to allow parental oversight while giving children some independence
Having a child with type 1 diabetes may sometimes seem overwhelming, but you’re not alone. You may be worried about your child’s safety, mourning the diagnosis, or dealing with the complexities of health insurance. It can feel like you need to know everything immediately, but this is totally new and it takes time to get used to. Give yourself a break and lean on those around you for help.
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“Type 1 diabetes in children.” John’s Hopkins Medicine. John’s Hopkins Medicine. 2022. https://www.hopkinsmedicine.org/health/conditions-and-diseases/diabetes/type-1-diabetes-in-children
“Type 1 diabetes in children.” Mayo Clinic. Mayo Clinic. December 18, 2020. https://www.mayoclinic.org/diseases-conditions/type-1-diabetes-in-children/symptoms-causes/syc-20355306
“What is Type 1 Diabetes?” Nemours Children’s Health. Nemours. September 2021. https://kidshealth.org/en/parents/type1.html