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Type 1 diabetes in children
Know what symptoms to look out for, as well as more about diagnosis, treatment and daily living with this lifelong insulin-dependent condition.
Type 1 diabetes in children is a condition in which your child's body no longer produces an important hormone (insulin). Your child needs insulin to survive, so the missing insulin needs to be replaced with injections or with an insulin pump. Type 1 diabetes in children used to be known as juvenile diabetes or insulin-dependent diabetes.
The diagnosis of type 1 diabetes in children can be overwhelming, especially in the beginning. Suddenly you and your child — depending on his or her age — must learn how to give injections, count carbohydrates and monitor blood sugar.
There's no cure for type 1 diabetes in children, but it can be managed. Advances in blood sugar monitoring and insulin delivery have improved blood sugar management and quality of life for children with type 1 diabetes.
The signs and symptoms of type 1 diabetes in children usually develop quickly, and may include:
- Increased thirst
- Frequent urination, possibly bed-wetting in a toilet-trained child
- Extreme hunger
- Unintentional weight loss
- Irritability or behavior changes
- Fruity-smelling breath
When to see a doctor
See your child's doctor if you notice any of the signs or symptoms of type 1 diabetes.
The exact cause of type 1 diabetes is unknown. But in most people with type 1 diabetes, the body's immune system — which normally fights harmful bacteria and viruses — mistakenly destroys insulin-producing (islet) cells in the pancreas. Genetics and environmental factors appear to play a role in this process.
Once the islet cells of the pancreas are destroyed, your child produces little or no insulin. Insulin performs the critical job of moving sugar (glucose) from the bloodstream to the body's cells. Sugar enters the bloodstream when food is digested.
Without enough insulin, sugar builds up in your child's bloodstream, where it can cause life-threatening complications if left untreated.
Risk factors for type 1 diabetes in children include:
- Family history. Anyone with a parent or siblings with type 1 diabetes has a slightly increased risk of developing the condition.
- Genetics. Certain genes indicate an increased risk of type 1 diabetes.
- Race. In the United States, type 1 diabetes is more common among white children of non-Hispanic descent than among children of other races.
- Certain viruses. Exposure to various viruses may trigger the autoimmune destruction of the islet cells.
Type 1 diabetes can affect the major organs in your body. Keeping your blood sugar level close to normal most of the time can dramatically reduce the risk of many complications.
Complications can include:
- Heart and blood vessel disease. Diabetes increases your child's risk of developing conditions such as narrowed blood vessels, high blood pressure, heart disease and stroke later in life.
- Nerve damage. Excess sugar can injure the walls of the tiny blood vessels that nourish your child's nerves. This can cause tingling, numbness, burning or pain. Nerve damage usually happens gradually over a long period of time.
- Kidney damage. Diabetes can damage the numerous tiny blood vessel clusters that filter waste from your child's blood.
- Eye damage. Diabetes can damage the blood vessels of the retina, which may lead to vision problems.
- Osteoporosis. Diabetes may lead to lower than normal bone mineral density, increasing your child's risk of osteoporosis as an adult.
There's currently no known way to prevent type 1 diabetes, but this is a very active area of research. Researchers are working on:
- Preventing type 1 diabetes in people who have a high risk of the disease, and recently identified at least one drug that may slow down the development of the condition.
- Preventing further destruction of the islet cells in people who are newly diagnosed.
Doctors can detect the antibodies associated with type 1 diabetes in children who have a high risk of the disorder. These antibodies can be detected months or even years before the first symptoms of type 1 diabetes appear, but there's currently no known way to slow or prevent the disease when antibodies are found. It's also important to know that not everyone with these antibodies goes on to develop type 1 diabetes.
While there's nothing you could have done to prevent your child's type 1 diabetes, you can help your child prevent its complications by:
- Helping your child maintain good blood sugar control as much as possible
- Teaching your child the importance of eating a healthy diet and participating in regular physical activity
- Scheduling regular visits with your child's diabetes doctor and a yearly eye exam beginning no more than five years after the initial diabetes diagnosis or by age 10
There are several blood tests for type 1 diabetes in children:
- Random blood sugar test. This is the primary screening test for type 1 diabetes. A blood sample is taken at a random time. A blood sugar level of 200 milligrams per deciliter (mg/dL), or 11.1 millimoles per liter (mmol/L), or higher suggests diabetes.
- Glycated hemoglobin (A1C) test. This test indicates your child's average blood sugar level for the past three months. An A1C level of 6.5 percent or higher on two separate tests indicates diabetes.
- Fasting blood sugar test. A blood sample is taken after your child fasts overnight. A fasting blood sugar level of 126 mg/dL (7.0 mmol/L) or higher suggests type 1 diabetes.
If blood sugar testing indicates diabetes, your doctor will likely recommend additional tests to distinguish between type 1 diabetes and type 2 diabetes because treatment strategies differ by type.
These additional tests include:
- Blood tests to check for antibodies that are common in type 1 diabetes
- Urine or blood tests to check for the presence of ketones, which also suggests type 1 diabetes rather than type 2
You'll work closely with your child's diabetes treatment team — doctor, diabetes educator and dietitian — to keep your child's blood sugar level as close to normal as possible. Treatment for type 1 diabetes includes:
- Taking insulin
- Carbohydrate counting
- Frequent blood sugar monitoring
- Eating healthy foods
- Exercising regularly
Blood sugar monitoring
You will need to check and record your child's blood sugar at least four times a day. But you'll probably need to check it more often if your child doesn't have a continuous glucose monitor.
Frequent testing is the only way to make sure that your child's blood sugar level remains within his or her target range — which may change as your child grows and changes. Your child's doctor will let you know what your child's blood sugar target range is.
Continuous glucose monitoring (CGM)
Continuous glucose monitoring (CGM) devices measure your blood sugar every few minutes using a temporary or implanted sensor inserted under the skin. Some devices show your blood sugar reading at all times on a receiver or your smartphone or smartwatch, while others require that you check your blood sugar by running the receiver over the sensor.
Insulin and other medications
Anyone who has type 1 diabetes needs lifelong treatment with one or more types of insulin to survive. Many types of insulin are available, including:
- Rapid-acting insulin. This type of insulin starts working within 15 minutes. Insulin lispro (Humalog, Admelog), aspart (NovoLog, Fiasp) and glulisine (Apidra) are examples.
- Short-acting insulin. Human insulin (Humulin R, Novolin R) starts working around 30 minutes after injection.
- Intermediate-acting insulin. NPH insulin (Humulin N, Novolin N, Novolin Relion Insulin N) starts working within about one to three hours and lasts 12 to 24 hours.
- Long- and ultra-long-acting insulin. Therapies such as insulin glargine (Basaglar, Lantus, Toujeo) and insulin detemir (Levemir) and degludec (Tresiba) may provide coverage for as long as 14 to 40 hours.
Insulin delivery options
There are several options for insulin delivery, including:
- Fine needle and syringe. This looks like a shot you might get in a doctor's office, but with a much thinner needle.
- Insulin pen with fine needle. This device looks like an ink pen, except the cartridge is filled with insulin.
- An insulin pump. This is a small device worn on the outside of your body that you program to deliver specific amounts of insulin throughout the day and when you eat. A tube connects a reservoir of insulin to a catheter that's inserted under the skin of your abdomen. There's also a tubeless pump option that involves wearing a pod containing the insulin on your body combined with a tiny catheter that's inserted under your skin.
Combined insulin pumps/continuous glucose monitors
A device called a sensor-augmented pump combines an insulin pump and a continuous glucose monitor with a sophisticated algorithm to automatically deliver insulin when it's needed. The goal is to develop a completely automatic "closed loop" system, called the artificial pancreas.
Right now, what's known as a hybrid closed loop system is available. People with type 1 diabetes still have to tell the device how many carbohydrates they eat, and periodically confirm blood sugar levels, but the device adjusts insulin delivery throughout the day automatically. The available devices continue to be refined, and research will likely be ongoing until a fully automated system is available.
Food is a big component of any diabetes treatment plan, but that doesn't mean your child has to follow a strict "diabetes diet." Just like the rest of the family, your child's diet should regularly include foods that are high in nutrition and low in fat and calories, such as:
- Lean protein
- Whole grains
Your child's dietitian can help you create a meal plan that fits your child's food preferences and health goals, as well as help you plan for occasional treats. He or she will also teach you how to count carbohydrates in foods so that you can use that information when figuring out insulin doses.
Everyone needs regular aerobic exercise, and children who have type 1 diabetes are no exception. Encourage your child to get at least 60 minutes of physical activity daily or, better yet, exercise with your child. Make physical activity part of your child's daily routine.
But remember that physical activity usually lowers blood sugar, and can affect blood sugar levels for hours after exercise, possibly even overnight. If your child begins a new activity, check your child's blood sugar more often than usual until you learn how his or her body reacts to the activity. You might need to adjust your child's meal plan or insulin doses to compensate for the increased activity.
Blood sugar can sometimes change unpredictably. Ask your child's diabetes treatment team how to handle these and other challenges:
- Picky eating. Very young children with type 1 diabetes might not finish what's on their plates, which can be a problem if you've already given them insulin for that food.
- Illness. Sickness has varying effects on your child's insulin needs. Hormones produced during illness raise blood sugar levels, but reduced carbohydrate intake due to poor appetite or vomiting lowers the insulin requirement. Your child's doctor will recommend a flu shot for your child every year, and may recommend the pneumonia vaccine too.
- Growth spurts and puberty. Just when you've mastered your child's insulin needs, he or she sprouts up seemingly overnight, and suddenly isn't getting enough insulin. Hormones also can affect insulin requirements, particularly for teenage girls as they begin to menstruate.
- Sleep. To avoid problems with low blood sugar during the night, you might need to adjust your child's insulin routine.
Follow-up medical care
Your child will need regular follow-up appointments to ensure good diabetes management and to check his or her A1C levels. The American Diabetes Association generally recommends an A1C of 7.5 or lower for all children and teens.
Your doctor also will periodically check your child's:
- Blood pressure
- Cholesterol levels
- Thyroid function
- Kidney function
- Liver function
Signs of trouble
Despite your best efforts, sometimes problems will arise. Certain short-term complications of type 1 diabetes require immediate care or they could become very serious, including:
- Low blood sugar (hypoglycemia)
- High blood sugar (hyperglycemia)
- Diabetic ketoacidosis (DKA)
Low blood sugar (hypoglycemia)
Hypoglycemia is a blood sugar level below your child's target range. Blood sugar levels can drop for many reasons, including skipping a meal, getting more physical activity than normal or injecting too much insulin. Low blood sugar is not uncommon in people with type 1 diabetes, but if it isn't treated quickly, symptoms will get worse.
Signs and symptoms of low blood sugar include:
- Irritability and other mood changes
- Difficulty concentrating or confusion
- Dizziness or lightheadedness
- Loss of coordination
- Slurred speech
- Loss of consciousness
Teach your child the symptoms of low blood sugar. When in doubt, he or she should always do a blood sugar test. If a blood glucose meter isn't readily available and your child is having symptoms of a low blood sugar, treat for low blood sugar, and then test as soon as possible.
If your child has a low blood sugar reading:
- Have him or her consume 15 to 20 grams of a fast-acting carbohydrate, such as fruit juice, glucose tablets, hard candy, regular (not diet) soda or another source of sugar. Foods with added fat, such as chocolate or ice cream, don't raise blood sugar as quickly because fat slows down the absorption of the sugar.
- Retest your child's blood sugar in about 15 minutes to make sure it's normal, and repeat as necessary until you get a normal reading.
If a low blood sugar causes your child to lose consciousness, an emergency injection of a hormone that stimulates the release of sugar into the blood (glucagon) may be necessary.
High blood sugar (hyperglycemia)
Hyperglycemia is a blood sugar level above your child's target range. Blood sugar levels can rise for many reasons, including illness, eating too much, eating the wrong types of foods and not taking enough insulin.
Signs and symptoms of high blood sugar include:
- Frequent urination
- Increased thirst or dry mouth
- Blurred vision
If you suspect a high blood sugar, test your child's blood sugar. If your child's blood sugar is higher than the target range, follow your child's diabetes treatment plan or check with your child's doctor. High blood sugar levels don't come down quickly, so ask your doctor how long to wait until you check your child's blood sugar again.
If your child has a blood sugar reading above 240 mg/dL (13.3 mmol/L), your child should use a urine test stick to test for ketones. Don't allow your child to exercise if his or her blood sugar level is high or if ketones are present.
Diabetic ketoacidosis (DKA)
A severe lack of insulin causes your child's body to break down fat for energy. This causes the body to produce a substance called ketones. Excess ketones build up in your child's blood, creating a potentially life-threatening condition known as diabetic ketoacidosis.
Signs and symptoms of DKA include:
- Thirst or very dry mouth
- Increased urination
- Dry or flushed skin
- Nausea, vomiting or abdominal pain
- A sweet, fruity smell on your child's breath
If you suspect DKA, check your child's urine for excess ketones with an over-the-counter ketone test kit. If the ketone levels are high, call your child's doctor or seek emergency care.
Following a diabetes treatment plan requires 24-hour care and significant lifestyle changes, which can be frustrating at times. No one can do it perfectly. But your efforts are worthwhile. Careful management of type 1 diabetes helps reduce your child's risk of serious complications.
As your child gets older:
- Encourage him or her to take an increasingly active role in diabetes management
- Stress the importance of lifelong diabetes care
- Teach your child how to test his or her blood sugar and inject insulin
- Help your child make wise food choices
- Encourage your child to remain physically active
- Foster a relationship between your child and his or her diabetes treatment team
- Make sure your child wears a medical identification tag
The habits you teach your child today will help him or her enjoy an active and healthy life with type 1 diabetes.
School and diabetes
You'll need to work with your child's school nurse and teachers to make sure they know the symptoms of high and low blood sugar levels. The school nurse might need to administer insulin or check your child's blood sugar levels. Federal law protects children with diabetes, and schools must make reasonable accommodations to ensure that all children get a proper education.
People who have type 1 diabetes must use insulin every day to survive. No alternative treatment or diet supplement can replace insulin for people with type 1 diabetes.
If managing your child's diabetes seems overwhelming, take it one day at a time. Some days you'll manage your child's blood sugar perfectly and on other days, it may seem as if nothing works well. Don't forget that you're not alone.
Your child's emotions
Diabetes can affect your child's emotions both directly and indirectly. Poorly controlled blood sugar can cause behavior changes, such as irritability.
Diabetes can also make your child feel different from other kids. Having to draw blood and give themselves shots sets kids with diabetes apart from their peers. Getting your child together with other children who have diabetes or spending time at a diabetes camp may help make your child feel less alone.
Mental health and substance abuse
People with diabetes have an increased risk of depression, anxiety and diabetes-related distress. That's why some diabetes specialists regularly include a social worker or psychologist as part of their diabetes care team. If you notice that your child or adolescent is persistently sad or pessimistic, or experiences dramatic changes in sleeping habits, weight, friends or school performance, have your child screened for depression.
Rebellion also may be an issue, particularly for teens. A child who has been very good about sticking to his or her diabetes regimen may rebel in the teen years by ignoring his or her diabetes care. Additionally, experimenting with drugs, alcohol and smoking can be even more dangerous for people with diabetes.
Talking to a counselor or therapist may help your child or you cope with the dramatic lifestyle changes that come with a diagnosis of type 1 diabetes. Your child may find encouragement and understanding in a type 1 diabetes support group for children. Support groups for parents also are available.
If you're interested, your doctor may be able to recommend a group in your area. Websites that offer support include:
- The American Diabetes Association (ADA). The ADA also offers diabetes camp programs that provide education and support for children and teens with diabetes.
- Children with Diabetes.
Putting information in context
The threat of complications from poorly managed diabetes can be frightening. It's important to remember that many studies — and therefore, a lot of literature you may be reading — were completed before many advances in diabetes care occurred. If you and your child work with your child's doctor and do your best to manage your child's diabetes, your child will likely live a long and normal life.
Your child's primary care doctor will probably make the initial diagnosis of type 1 diabetes. Hospitalization is often needed to stabilize your child's blood sugar levels.
Your child's long-term diabetes care likely will be handled by a doctor who specializes in metabolic disorders in children (pediatric endocrinologist). Your child's health care team will also generally include a dietitian, a certified diabetes educator and a doctor who specializes in eye care (ophthalmologist).
Here's some information to help you get ready for your appointment.
What you can do
Before your appointment take these steps:
- Write down any concerns you have about your child's well-being.
- Ask a family member or friend to join you. Managing diabetes requires you to remember a lot of information. Someone who accompanies you may recall something that you missed or forgot.
- Write down questions to ask your doctor. Ask your doctor for a referral to a dietitian or a diabetes nurse educator if you have concerns that might be better addressed by him or her.
Topics you might want to discuss with your doctor, dietitian or diabetes educator include:
- The frequency and timing of blood sugar monitoring
- Insulin therapy — types of insulin used, timing of dosing and amount of dose
- Insulin administration — shots versus pumps
- Low blood sugar— how to recognize and treat
- High blood sugar — how to recognize and treat
- Ketones — testing and treatment
- Nutrition — types of food and their effects on blood sugar
- Carbohydrate counting
- Exercise — adjusting insulin and food intake for activity
- Dealing with diabetes at school or summer camp and on special occasions, such as sleepovers
- Medical management — how often to visit the doctor and other diabetes care specialists
What to expect from your doctor
Your doctor is likely to ask you a number of questions, such as:
- How comfortable are you with managing your child's diabetes?
- How often does your child have low blood sugar episodes?
- What's a typical day's diet like?
- How often is your child exercising?
Contact your child's doctor or diabetes educator between appointments if your child's blood sugar is consistently out of the target range your doctor recommended or if you're not sure what to do in a certain situation.