Type 1 Diabetes in Children and When to Seek Medical Help

Medically Reviewed by Shruthi N, MD on November 22, 2024
Written by Lori M. King, PhD
13 min read

Type 1 diabetes is an autoimmune condition in which your immune system mistakenly destroys the cells in your pancreas that make insulin. This leads to high blood sugar.

It's the most common chronic condition affecting kids in the U.S. Your child could get type 1 diabetes at any age, but most people are diagnosed around age 5 or in early puberty (10-14 years old). White children of non-Hispanic descent are at a higher risk of getting it than other kids. Boys and people assigned male at birth are at a slightly higher risk than girls or people assigned female at birth.

The classic symptoms of type 1 diabetes in children is excessive thirst and hunger, peeing a lot, and losing weight even though they seem to be eating well. These symptoms may start out mild then get worse over days, weeks, or months. But it's more likely to be a shorter period in children than adults who develop type 1 diabetes.

High blood sugar can become diabetes-related ketoacidosis (DKA) fast in kids. DKA can be life-threatening, so it's essential you get them to the ER right away in that case. Symptoms include fruity-smelling breath, nausea and vomiting, rapid breathing, and drowsiness. Read on to learn more about the symptoms of type 1 diabetes so you can know when to get them to the doctor for testing.

Type 1 diabetes is caused by an autoimmune condition that destroys the insulin-making beta cells in your pancreas. This means your body makes very little or no insulin at all. Because you have little or no insulin to tell your cells to take up sugar from your blood, you get high blood sugar. You will need to monitor your blood sugar every day and take insulin injections.

You can be diagnosed with type 1 diabetes at any age, but people tend to be diagnosed more often between ages 5 and 7 or around puberty. It's one of the most frequently diagnosed chronic (lifelong) conditions in children. For this reason, doctors used to call it juvenile diabetes. Type 1 diabetes is slightly more common in boys and people assigned male at birth. This is unlike most autoimmune conditions, which are generally more common in people assigned female at birth.

You may be more familiar with type 2 diabetes. About 90%-95% of people with diabetes have type 2 diabetes. Type 2 diabetes is most commonly diagnosed after age 45, although anyone can get it, including children. People with type 2 diabetes usually make a lot of insulin, but their tissues become insulin resistant. This means that their tissues stop responding to insulin very well. So they wind up with high blood sugar, even though they make plenty of insulin. Experts think that this may be partly due to eating a lot of highly processed foods, carrying extra weight, and a lack of exercise.

In the U.S., about 1.25 million people are currently living with type 1 diabetes, and about 500,000 of these people are children.

Worldwide, type 1 diabetes diagnoses have raised by 200%-300% in the past 20-30 years. But researchers aren't exactly sure why that is. One idea is that people are exposed to fewer infections when they're younger now than they used to be. This is called the "hygiene hypothesis." Getting exposed to more infections at a younger age may train your immune system to better tell the difference between an invader and your own tissues. That may help protect you against developing some autoimmune conditions, like asthma and type 1 diabetes.

Type 1 diabetes is an autoimmune condition. At some point before you get symptoms, you develop at least two antibodies to the beta cells in your pancreas. Your pancreas is a large gland in your upper belly. It makes enzymes to help you digest your food and two hormones to help regulate your blood sugar: insulin and glucagon. When your blood sugar goes high, specific cells in your pancreas called beta cells make insulin to help lower it. When your blood sugar goes low, specific cells called alpha cells make glucagon to raise it back up.

The antibodies (called autoantibodies because they are against your own tissues) your body makes mistake your beta cells for microbe invaders. Thus, they begin to attack and kill these cells. People who develop these autoantibodies have a genetic predisposition to develop them.

Researchers have found more than 50 genes that seem to contribute to the risk of type 1 diabetes in children. But one specific group of genes called the human leukocyte antigen (HLA) system seems to contribute about 40% of this risk. The HLA system works to help your immune system tell the difference between foreign invaders and your own tissues. Several other autoimmune conditions are also linked to mutations in the HLA system, including rheumatoid arthritis, multiple sclerosis, and psoriasis. About 90% of children with type 1 diabetes have the HLA system variants DR4-DQ8 and DR3-DQ2.

If you have the genetic predisposition for type 1 diabetes, you won't necessarily develop it because you also need an environmental trigger. Experts don't really know for sure what this environmental trigger is, but it's likely to be a combination of factors. Such factors include:

  • The substances your mom was exposed to while you were developing as a fetus in her uterus
  • The viruses you've been exposed to since you were born
  • Your microbiome — all the helpful bacteria and fungi that live in and on your body
  • What your regular diet is like

Eventually, after most of your beta cells have been killed off by the autoantibodies, you will start to develop high blood sugars because you can't make enough insulin to keep it in balance. Although you likely won't have symptoms until your blood sugar has been high for awhile.

It can take years from the time you develop autoantibodies to when you begin having high blood sugar. Although the process can be fast, too. It's more likely to be a fast process in children.

The risk factors for type 1 diabetes in children include:

Family history

Most people who develop type 1 diabetes have no family history of it. But if your mom has it, your risk to develop it is about 1%-4%, while if your dad has it, your risk is about 3%-8%. If both your parents have it, your risk goes up to about 30%.

If one of your children has it, your other kids have about a 5% risk of it, unless they're twins. If they're fraternal twins, the risk that the other twin will develop it is about 10%. The risk is about 40%-50% for identical twins.

Because the link with family history is so strong, the American Diabetes Association (ADA) recommends that first-degree (parents and siblings) and second-degree (aunt, uncle, grandparent, grandchild, niece, nephew, or half-sibling) relatives of people with type 1 diabetes should be screened with an autoantibody test.

Ethnicity

White children of non-Hispanic descent seem to be at a higher risk than other children to develop type 1 diabetes.

Sex

Boys and people assigned male at birth seem to have a slightly higher risk than girls and people assigned female at birth.

Geography

People in the northern hemisphere seem to be at a higher risk than other people. The highest reported incidence of people with type 1 diabetes is in Finland and other countries in Northern Europe, while the lowest incidence is in China and Venezuela. In Finland, about 60 people are diagnosed for every 100,000 people they observe for a year (person years). In China, this is about 0.1 person per 100,000 person years. And in the U.S., about 20-30 people are diagnosed for every 100,00 person years.

Symptoms of type 1 diabetes in children may start out mild and then get worse over a period. This could be over days, weeks, or months. But it's more likely to be a shorter period in children. These symptoms may include:

  • Excessive thirst
  • Peeing a lot (toilet-trained toddlers and kids may start wetting their bed, and infants may fill their diapers really fast)
  • Unexplained weight loss (even though they seem to be eating well or even a lot)
  • Excessive hunger
  • Fatigue
  • Blurred vision
  • Cuts or sores that are slow to heal
  • Vaginal yeast infections

People with type 1 diabetes who aren't getting enough insulin can develop something known as DKA when their blood sugar goes too high. This is a medical emergency. If your child has any of the following symptoms, call 911 and get them to the ER right away:

  • Breath that smells fruity, sweet, or like wine
  • Nausea and vomiting
  • Belly pain
  • Rapid breathing
  • Confusion, or sudden strange behavior, like they're drunk
  • Drowsiness
  • Loss of consciousness

To diagnose your child with diabetes, their doctor will do a blood glucose test and may do a 75-gram oral glucose test (OGTT) or an A1c test. This may be after fasting (no food or drink for eight hours before your test) or random (without fasting). They'll be diagnosed if they meet two of the following criteria:

  • A fasting plasma glucose of 126 milligrams per deciliter or more on two separate occasions
  • If you have symptoms of high blood sugar, a random plasma glucose of 200 milligrams per deciliter or more
  • A plasma glucose level of 200 milligrams per deciliter or more two hours after a 75-gram OGTT
  • An A1c level of 6.5% or higher; this will show your average blood sugar level over the past three months

Your doctor will likely suspect type 1 based on your child's medical and family history, but once they're diagnosed, their doctor will likely run an antibody test to confirm it's type 1. For instance, they can test for autoantibodies to the following:

  • Islet cell cytoplasm
  • Insulin — this is the autoantibody most often found in children with type 1 diabetes
  • Glutamic acid decarboxylase isoform 65 — this is the autoantibody most often found in people who are first diagnosed as adults
  • Insulinoma antigen 2/islet tyrosine phosphatase 2
  • Zinc transporter isoform 8

Most people who have type 1 diabetes will have at least one of these autoantibodies in their blood. The more your child has and the higher their levels, the more likely they are to develop (or have) type 1 diabetes.

Their doctor can also test their C-peptide levels. C-peptide is protein that helps insulin fold into the right structure so it can do it's job. If your child has no or very low C-peptide levels, it means that their pancreas isn't making insulin or is only making a little.

Their doctor may also run some tests to check on their general health and to make sure you they don't have DKA. These tests usually include a basic metabolic panel, a urinalysis, and an arterial blood gas measurement. They may also screen your child for other autoimmune conditions that are associated with diabetes, such as celiac and thyroid disease.

Your pediatrician or family physician will likely recommend your child see a pediatric endocrinologist who specializes in managing kids with type 1 diabetes. Your child will need insulin injections several times a day every day to live and feel healthy. Your child's diabetes management strategy will have to be personalized to their body, life, and activity levels, and their endocrinologist will help them do that.

Your child's doctor may also suggest they see a nurse, diabetes educator, dietician, social worker, or psychologist, depending on your child's needs, what your insurance covers, and what specialists are available in your area.

In general, type 1 diabetes management includes:

Blood sugar monitoring

Your child will need to monitor their blood sugar throughout the day every day. It's usually done with a blood glucose meter, which is a fairly easy and inexpensive option to get a one-time blood reading at the time they tested. These use a small drop of blood from a finger stick on a test strip.

In the past 10 years or so, continuous glucose monitoring (CGM) devices have become available. You or the doctor will insert a small sensor under your skin. These provide much more information about your glucose levels.

Your child's endocrinologist will give them a target blood glucose level based on their individual needs and lifestyle and will work with them and you to come up with a plan to meet those targets.

Insulin injections

This is the key part of your child's diabetes management plan. Your child will take their insulin with multiple daily injections (MDIs), an insulin pen, or an insulin pump (also called continuous subcutaneous insulin infusion). If they take MDIs, your child will likely need more than one type of insulin. There are dozens of types available on the market that work at different speeds and over different periods. For instance, they will need a basal insulin injection once or twice a day to keep a background level of insulin in their blood. Then, they will need several bolus insulin injections at mealtimes to keep their blood sugar from going too high.

If they use an insulin pump, their pump will deliver rapid-acting basal insulin, often based on input from a CGM device. Then they may use their pump to deliver the bolus insulin they need at mealtimes.

Your child's insulin needs will change depending on a lot of different factors, such as what types of foods they eat, how much of it they eat, what their blood sugar level was before they eat, or if they're sick or taking medicines. This is why it's important to see a specialist who can help them figure out a good management strategy.

Carbohydrate counting

The ADA recommends a consultation with a dietician to help learn about how to eat a healthy diet as a person with diabetes. In general, experts recommend your child's daily energy intake (calories) should be:

  • 50%-55% carbohydrates, although no more than 10% of that should be simple sugars (like sucrose)
  • 10%-15% protein
  • 30% fats

Your child's dietician will help you learn how to calculate the carbohydrates in a food based on a healthy portion size. This is an essential skill for your child to master so they can calculate how much insulin they need on a daily basis.

Type 1 diabetes can be challenging to manage consistently over the course of a lifetime. A helpful goal to focus on as the parent is to help your child build their skills so they can manage their diabetes on their own and stay healthy.

Here are some tips to focus on as you support your child while they learn how to manage their condition:

  • Consider joining a support group for families of kids with type 1 diabetes.
  • Stay positive. Most people with type 1 diabetes live active, healthy lives.
  • Focus on what you can do today. There's a lot to learn, but you don't have to do it all right now.
  • Don't judge them or react harshly to high or low blood glucose levels. Sometimes, they can do everything right and still get a blood sugar number they didn't work for. Stay focused on what they can do right now to correct the number and consistently work on their habits.
  • Take a more flexible approach to eating. People with type 1 diabetes may be at a risk of an eating disorder because they have to pay a lot of attention to their diet. Stay focused on eating a healthy, balanced diet and learning to calculate the right insulin to carbohydrate ratio.
  • Encourage them to stay active.
  • Get and keep emergency glucagon with you. Hypoglycemia (low blood sugar) is a risk when you're getting used to using insulin to manage your blood sugar. Hypoglycemia can be life-threatening. A single-step glucagon shot can raise their blood sugar when they can't eat or drink anything.
  • Help educate your friends, family, teachers, and coaches on type 1 diabetes management. The more people in your community who know about type 1 diabetes, the more allies you have to support you while you help manage your child's condition.

If your child hasn't been diagnosed with type 1 diabetes but they are having symptoms like excessive thirst and hunger, peeing a lot, and losing weight, they need to go to the doctor to be tested.

If your child has already been diagnosed with type 1 diabetes, call your doctor if you notice any of these signs of low blood sugar (hypoglycemia):

  • Shaking and trembling
  • Sweating and chills
  • Cold, clammy, and pale skin
  • Dizziness and lightheadedness
  • Rapid pulse
  • Confusion
  • Headache
  • Nervousness and irritability
  • Weakness
  • Restless sleep

Low blood sugar can be life-threatening and needs to be treated right away. If your child loses consciousness or has seizures, call 911 and get them to the ER right away.

Also, if your child has symptoms of DKA, call 911 and get them to the ER right away:

  • Breath that smells fruity, sweet, or like wine
  • Nausea and vomiting
  • Belly pain
  • Rapid breathing
  • Confusion, or sudden strange behavior, like they're drunk
  • Drowsiness
  • Loss of consciousness

Type 1 diabetes is caused by an autoimmune condition that destroys the insulin-making beta cells in your pancreas. It causes high blood sugar. It's a lifelong condition that causes high blood sugar. Management requires insulin replacement, a careful diet, and blood sugar monitoring. But with the right education and support, your child can learn to manage their diabetes and live and long and fulfilling life.

Can children grow out of type 1 diabetes?

No, children can't outgrow type 1 diabetes. Once the beta cells in their pancreas have stopped making insulin, there is no way to repair that damage. But they can learn to manage their condition so that they live a healthy and fulfilling life. And new progress is made in treatment all the time. For instance, in the past 10-15 years, insulin pumps and CGM devices have become more widely used. These tools can help make their life a little easier.

Can children with type 1 diabetes live a normal life?

Yes, children with type 1 diabetes can look forward to a long, healthy, and fulfilling life. They may need to take more care with their health — and they may need a bit more support — than kids without diabetes, but it's a manageable condition. With the right care plan and support, there's no reason they can't live healthy, happy lives.

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