Being diagnosed with a disease is scary. But when we’re talking about a child—specifically, your child—that adds a whole new layer of worry. Will it affect her ability to do normal teenager things? Will he struggle even more when he becomes an adult? In the case of juvenile diabetes, the good—and important—news is that the disease is totally manageable. Here’s what you need to know about the causes, symptoms, and treatments of this illness.
We went to some of the nation’s top experts in juvenile diabetes to bring you the most up-to-date information possible.
Emily Nosova, M.D.Endocrinologist
Stelios Mantis, M.D.Pediatric Endocrinologist
Anis Rehman, M.D.Endocrinologist and Assistant Professor of Medicine
What Is Juvenile Diabetes?
Juvenile diabetes is mostly an autoimmune disorder and is also referred to as type 1 diabetes. As the name suggests, the disease is commonly diagnosed in childhood or adolescence (as opposed to type 2 or “adult-onset” diabetes, which occurs most often in middle age).
In truth though, juvenile/type 1 diabetes doesn’t only happen in kids—it’s possible, though less common, for adults to get it, too. Similarly, children can and sometimes do get type 2. According to the most recent figures, about 193,000 kids and teens have diabetes; approximately 77% of those cases are juvenile diabetes.
People with all types of diabetes share one thing in common: High amounts of sugar, or glucose, in their blood.
How Glucose Works
To understand how high glucose can lead to diabetes, we need a bit of science. Let's start here: After you eat, your body breaks down the food into glucose (a.k.a. sugar) and other substances, which then enter the bloodstream.
In response, your pancreas releases insulin,a type of hormone that helps muscle and fat cells suck up the glucose and use it for energy. Sounds good, right?
But in kids with juvenile diabetes, the body’s immune system gets confused and starts attacking the beta cells in the pancreas that make insulin, shutting down production. Without insulin to help guide glucose into the body's cells, sugar starts to build up in the bloodstream, leading to a host of health issues.
Who Gets Juvenile Diabetes?
About 23 million people in the United States have been diagnosed with diabetes, and 5% to 10% of those cases are juvenile (type 1). That works out to about one in 250 people; of those, about three-quarters are diagnosed with juvenile diabetes during childhood or young adulthood.
The most common age for a juvenile diabetes diagnosis is between 10 and 16, possibly because puberty triggers an increase in hormone production and these hormones, including estrogen and testosterone, can affect blood sugar levels.
What Causes Juvenile Diabetes?
Doctors don’t know exactly why some kids develop juvenile diabetes and others don’t. It’s not linked to a specific gene that you can test for, and although autoimmune disorders can run in families, most cases of juvenile diabetes appear to happen randomly.
Here’s what we know about possible factors that play a role in the development of the disease:
Ethnicity and geography. Juvenile diabetes becomes more common the further away you live from the equator. For instance, children in Scandinavian countries have a much higher risk of being diagnosed with the disease. And Caucasians of Northern European ancestry have a higher risk than other ethnicities.
Genetics. Although there is no juvenile diabetes “gene,” there are several genes and mutations that have been identified as increasing your risk for it. In particular, mutations in the human leukocyte antigen (HLA) class of genes, which are related to the immune system, can raise the risk of autoimmune conditions like juvenile diabetes.
Family history. If autoimmune conditions run in your family, that means your child is at higher risk of developing one, too. Some studies suggest that if a sibling or parent has type 1 diabetes, kids have a 15 times higher risk of developing the condition than someone without any family history.
Toxins and infections. Doctors believe that in most cases, a toxin or virus triggers the start of juvenile diabetes. This “foreign invader” kicks the immune system into gear, causing it to mistakenly attack the pancreas and kill off insulin-producing beta cells.
Feeling super thirsty: When there’s too much sugar in the bloodstream, the body pulls water from surrounding tissues to try to dilute it. That can make kids dehydrated and thirsty. Some kids with diabetes may feel like no matter how much they drink, they can’t quench their thirst.
Peeing a lot or having accidents: To help reduce sugar in the blood, the kidneys try to filter it out and dump it into the urine. That creates more pee and the need to pee more often. Kids with juvenile diabetes may suddenly start having pee accidents at night or even during the day, even though they’ve been potty-trained for years. Some kids may also feel the urge to pee frequently (even if little or nothing comes out), and they have a higher risk of urinary tract infections (UTIs).
Weight loss: If your child is otherwise healthy and eating normally but losing weight, it could be a sign of juvenile diabetes. Weight loss happens when the body’s cells can’t pull the glucose they need for fuel out of the bloodstream, so they start to breaking down body fat, muscles, and other tissues for energy instead.
Bad breath: When a child’s body starts breaking down its own fat stores for fuel, it creates chemicals called ketones that sometimes cause breath to have a stale smell. It’s the same bad breath that happens to some people who go on extremely low-carb diets.
Fatigue: Juvenile diabetes can make kids feel tired and weak because their brains, muscles, and other body systems aren’t getting enough energy to work properly. Dehydration from frequent urination causes fatigue, too. Sometimes, listlessness and weakness is a sign of a serious complication called ketoacidosis. Ketoacidosis in kids can be deadly and requires prompt treatment.
Belly pain, vomiting, fainting and confusion: Ketoacidosis can also cause severe stomach aches and vomiting, and may cause children to act confused or even lose consciousness.
Tests for Juvenile Diabetes
The first step in getting a diabetes diagnosis is a blood test to look for elevated glucose levels. If your child is diagnosed with high blood sugar, then the doctor will want to perform additional tests to identify the specific type of diabetes. Correct diagnosis is very important since treatment is different for each type. Your child may need one or more of the below:
A1C (or glycated hemoglobin) test. This test measures what percentage of red blood cells have been coated with glucose over the past two to three months and is the most common test for diabetes. The higher a child’s blood sugar, the higher his score. An A1C result below 5.7 is considered normal; 5.7 to 6.4 is prediabetic; 6.5 or above suggests diabetes.
Fasting blood sugar test. Blood will be drawn first thing in the morning before your child eats or drinks anything other than water. A result under 100 milligrams per deciliter is normal; 100 to 125 mg/dL is prediabetic; 126 mg/dL indicates diabetes. The doctor will likely want to do the test twice before officially diagnosing your child.
Random blood sugar test. Blood is drawn at any time of day, whether your child has eaten recently or not. A result of 200 mg/dL indicates diabetes.
Antibody test. To help differentiate between juvenile diabetes and other types, a doctor may also want to draw blood for an “autoantibody” test. This test will show if your child’s immune system is attacking the pancreas. Kids with juvenile diabetes often test positive for several specific autoantibodies, while those with type 2 don’t.
Your child’s doctor may want to test his urine for ketones. The test can generally be done at home or in a doctor’s office by peeing into a specimen cup.
If you’re doing the test at home, it will come with paper test strips to dip into the urine. Extremely high levels of ketones are a sign of ketoacidosis, a potentially fatal complication of diabetes that requires immediate treatment.
Treatment for Juvenile Diabetes
All children with juvenile diabetes need to regularly check their blood glucose levels, take insulin daily, and be mindful of what they eat—not because diet can cure juvenile diabetes (it can’t), but because large meals or those high in carbohydrates rely on high doses of insulin to manage blood sugar levels, and your child’s body isn't able to produce that insulin.
Checking Glucose Levels
Kids with juvenile diabetes may need to check (or have someone help check) their blood glucose four to 10 times a day in order to make decisions about insulin dosages, food, and exercise choices.
This can be done with a home glucose meter. To use it, the child’s fingertip is pricked with a specialized lancet “pen,” then blood is dropped onto a test strip in the meter. In some cases, a doctor might suggest a continuous glucose monitor, a tiny sensor that is inserted under the skin of the abdomen, arms, or thigh to check glucose levels regularly. The sensor will alert your child if levels fall too low.
All people with type 1 diabetes need to take insulin daily. Unfortunately, insulin can’t be taken as a pill because it would be broken down and digested before getting into your blood.
There are a couple of different ways insulin can be delivered to the body:
Injection: This is the most common way to take insulin. Your child (or someone helping him) will use a syringe or “pen” to inject the drug, usually in the belly, upper arm, thigh, or butt. Kids may need four or more injections a day.
Insulin Pump: Children who need multiple injections per day or are high risk of ketoacidosis may prefer an insulin pump, which automatically delivers insulin throughout the day through a tiny catheter that’s worn on the body.
The type of insulin your child take depends on several factors, including how long it takes the body to absorb insulin; your child’s diet and exercise habits; and tolerance for injections. A pediatrician will help determine what’s best for your child. These are the common options:
Rapid-Acting Insulin: This medication starts to work within about 15 minutes of taking it (often just before a meal to prevent blood glucose from rising). It works for two to four hours. Examples include Humalog (lispro) and Novolog (aspart).
Short-Acting Insulin: Also called “regular” insulin, this med takes about 30 minutes to kick in. It is taken before a meal to help lower increased levels of blood sugar while eating. It works for three to six hours. Examples include Humulin R and Novolin R.
Intermediate-Acting Insulin: Often combined with rapid-acting insulin, this med starts working about two to four hours after taking and balances the body’s glucose levels for 12 to 18 hours. Examples include Humulin N and Novolin N (NPH).
Long-Acting Insulin: These meds can take up to six hours to reach the bloodstream. They work to maintain lower blood sugar levels for up to 26 hours. Examples include Lantus (insulin glargine) and Levemir (insulin detemir).
Ultra long-acting Insulin:_ Reaches the blood stream in 6 hours, does not peak, and lasts about 36 hours or longer. Examples include Degludec (Tresiba), Glargine u-300 (Toujeo).
Managing Juvenile Diabetes at School
Juvenile diabetes treatment creates special challenges for school-age kids. Having to disappear from classes several times a day is awkward at best, and problematic at worst.
Once the plan is ready, you should meet with your child’s teachers, principals, office staff, and the school nurse to go over the specifics. This may include:
Target blood sugar ranges. These numbers will be included in the DMMP and let the school know what a healthy range is for your child. That way, if your child starts to not feel well, the school will know if it is due to blood sugar levels.
Medication doses and procedures. This will apply to insulin and any other medications your child is taking.
Meal and snack guidelines. The goal is to keep blood sugar levels stable, which may require monitoring what your child eats while at school.
How to spot low blood sugar in your child. Even though diabetes causes high blood sugar, kids with juvenile diabetes can also experience dangerously low blood sugar that needs to be addressed right away. Children often have their own unique symptoms, such as irritability, nervousness, or dizziness.
You might also consider setting up what’s called a “504 plan” with your child’s school or daycare that ensures your child will receive the care and opportunities available under the Americans with Disabilities Act.
It’s also smart to have your child wear a medical ID bracelet or necklace daily—in an emergency, those little pieces of jewelry are a shortcut to knowing who to call, what type of diabetes your child has, and details about medication. There are lots of colorful and cool options to choose, including ones with swappable bands to coordinate with various outfits (critical, no?).
Bottom line: Managing juvenile diabetes can be a challenge—for children and their parents. But the growing number of treatments and support systems for those with the disease makes it easier than ever to live happy, normal kid lives—whatever that may mean!
Frequently Asked QuestionsJuvenile Diabetes
What are the signs of diabetes in kids?
Kids with juvenile diabetes may suddenly start having pee accidents, even if they’ve been potty-trained. They may also have to pee frequently and feel extremely thirsty. Other symptoms include weight loss and stale breath.
Can kids get other types of diabetes?
It’s possible. Juvenile diabetes is the most common, but rates of type 2 in kids are increasing. Roughly 5,300 kids are diagnosed with type 2 every year, compared to 17,900 annual diagnoses for juvenile diabetes.
How is juvenile diabetes diagnosed?
The first step is a blood test, usually the A1C (or glycated hemoglobin) test, to check for diabetes in general. This test measures what percentage of red blood cells have been coated with glucose over the past two to three months. Further blood tests are then done to pinpoint whether your child has juvenile diabetes or another type.
Can you inherit juvenile diabetes?
If there’s a family history of autoimmune conditions, a child is at higher risk of developing one, too, and that includes diabetes. Research shows that kids who have a sibling or parent with type 1 diabetes are at 15 times higher risk of developing juvenile diabetes than those without any family history of the disease.