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 you'll have to replace the missing insulin. 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 at first. Suddenly you and your child — depending on his or her age — must learn how to give injections, count carbohydrates and monitor blood sugar.
Type 1 diabetes in children requires consistent care. But advances in blood sugar monitoring and insulin delivery have improved the daily management of the condition.
The signs and symptoms of type 1 diabetes in children usually develop quickly, over a period of weeks. These signs and symptoms include:
- Increased thirst and frequent urination. Excess sugar building up in your child's bloodstream pulls fluid from tissues. As a result your child might be thirsty — and drink and urinate more than usual. A young, toilet-trained child might suddenly experience bed-wetting.
- Extreme hunger. Without enough insulin to move sugar into your child's cells, your child's muscles and organs lack energy. This triggers intense hunger.
- Weight loss. Despite eating more than usual to relieve hunger, your child may lose weight — sometimes rapidly. Without the energy sugar supplies, muscle tissues and fat stores simply shrink. Unexplained weight loss is often the first sign of type 1 diabetes to be noticed in children.
- Fatigue. Lack of sugar in your child's cells might make him or her tired and lethargic.
- Irritability or behavior changes. In addition to mood problems, your child might suddenly have a decline in performance at school.
- Fruity-smelling breath. Burning fat instead of sugar produces certain substances (ketones) that can cause a fruity breath odor.
- Blurred vision. If your child's blood sugar is too high, fluid may be pulled from the lenses of your child's eyes. Your child might be unable to focus clearly.
- Yeast infection. Girls with type 1 diabetes may have a genital yeast infections. Babies can develop diaper rashes caused by yeast.
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.
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.
Once the islet cells of the pancreas are destroyed, your child produces little or no insulin. As a result, glucose builds up in your child's bloodstream, where it can cause life-threatening complications.
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.
- Genetic susceptibility. The presence of certain genes indicates an increased risk of developing type 1 diabetes.
- Race. In the United States, type 1 diabetes is more common among non-Hispanic white children than among other races.
Environmental risk factors might include:
- Certain viruses. Exposure to various viruses may trigger the autoimmune destruction of the islet cells.
- Diet. No specific dietary factor or nutrient in infancy has been shown to play a role in the development of type 1 diabetes. However, early intake of cow's milk has been linked to an increased risk of type 1 diabetes, while breast-feeding might lower the risk. The timing of the introduction of cereal into a baby's diet also may affect a child's risk of type 1 diabetes.
Complications of type 1 diabetes develop gradually. If blood sugar levels aren't well-controlled over a prolonged period of time, diabetes complications can eventually be disabling or even life-threatening.
Complications can include:
- Heart and blood vessel disease. Diabetes dramatically increases your child's risk of developing conditions such as coronary artery disease with chest pain (angina), heart attack, stroke, narrowing of the arteries (atherosclerosis) and high blood pressure later in life.
- Nerve damage. Excess sugar can injure the walls of the tiny blood vessels that nourish your child's nerves, especially in the legs. 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. Severe damage can lead to kidney failure or irreversible end-stage kidney disease, requiring dialysis or a kidney transplant.
- Eye damage. Diabetes can damage the blood vessels of the retina, which may lead to poor vision and even possibly causing blindness. Diabetes can also lead to cataracts and a greater risk of glaucoma.
- Skin conditions. Diabetes may leave your child more prone to skin problems, including bacterial infections, fungal infections and itching.
- 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.
Children who have a high risk of developing type 1 diabetes can be tested for antibodies associated with the disorder. But the presence of these antibodies doesn't make diabetes inevitable. And there's currently no known way to prevent type 1 diabetes if the antibodies are found.
Researchers are working on preventing type 1 diabetes in people who have a high risk of developing the disease. Other research focuses on preventing further destruction of the islet cells in people who are newly diagnosed.
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
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. Regardless of when your child last ate, a random 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 two to three months. Specifically, the test measures the percentage of blood sugar attached to the oxygen-carrying protein in red blood cells (hemoglobin). 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 indicates type 1 diabetes.
Your doctor will likely recommend additional tests to confirm the type of diabetes that your child has. It's important to distinguish between type 1 diabetes and type 2 diabetes because treatment strategies differ.
These additional tests include:
- Blood tests to check for antibodies that are common in type 1 diabetes
- Urine tests to check for the presence of ketones, which also suggests type 1 diabetes rather than type 2
After the diagnosis
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 recommends an A1C of 7.5 or lower for all children.
Your doctor also will periodically use blood and urine tests to check your child's:
- Cholesterol levels
- Thyroid function
- Kidney function
In addition, your doctor will regularly:
- Assess your child's blood pressure and growth
- Check the sites where your child tests blood sugar and delivers insulin
Your child will need regular eye examinations. Your child also might be screened for celiac disease at the time of diagnosis of diabetes and at intervals afterward, depending on your child's age and symptoms.
Treatment for type 1 diabetes is lifelong and includes blood sugar monitoring, insulin therapy, healthy eating and regular exercise — even for kids. As your child grows and changes, so will his or her diabetes treatment plan.
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.
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.
Blood sugar monitoring
You will need to check and record your child's blood sugar at least four times a day but probably more often. This requires frequent finger sticks. Some blood glucose meters allow for testing at sites other than the fingertips.
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) is the newest way to monitor blood sugar levels. It may be most helpful for people who don't experience the usual warning symptoms of hypoglycemia.
CGM uses a fine needle inserted just under the skin that checks blood glucose level every few minutes. CGM isn't yet considered as accurate as standard blood sugar monitoring. It can be an additional tool but generally doesn't replace regular blood sugar monitoring.
Insulin and other medications
Anyone who has type 1 diabetes needs insulin treatment to survive. Many types of insulin are available, including:
- Rapid-acting insulin. Insulin therapies such as lispro (Humalog), aspart (NovoLog) and glulisine (Apidra) start working within 15 minutes, peak in about one hour and last four hours.
- Short-acting insulin. Therapies such as human insulin (Humulin R) should be injected 20 to 30 minutes before a meal, peak in 1.5 to two hours and last four to six hours.
- Intermediate-acting insulin. Therapies such as NPH insulin (Humulin N) start working within about one hour, peak in about six hours and last 12 to 24 hours.
- Long-acting insulin. Therapies such as insulin glargine (Lantus) and insulin detemir (Levemir) have almost no peak and may provide coverage for as long as 20 to 26 hours.
Depending on your child's age and needs, your doctor may prescribe a mixture of insulin types to use throughout the day and night.
Insulin delivery options
There are several options for insulin delivery, including:
- Fine needle and syringe. An advantage of needle and syringe is that some different types of insulin can be mixed in a single injection, reducing the number of injections.
- Insulin pen. This device looks like an ink pen, except the cartridge is filled with insulin. Pens with mixed insulin preparations are available, but these mixtures generally aren't tailored for children.
- Insulin pump. This is a device about the size of a cellphone that is worn on the outside of the body. A tube connects a reservoir of insulin to a catheter inserted under the skin of the abdomen. The pump can be used in conjunction with CGM.
Your child won't be restricted to a lifetime "diabetes diet" of boring, bland foods. Instead, your child needs plenty of fruits, vegetables and whole grains — foods that are high in nutrition and low in fat and calories. Ideally, your child's intake of carbohydrates should be consistent.
Your child's dietitian will likely suggest that your child — and the rest of the family — consume fewer animal products and sweets. This eating plan is the best for the whole family. Sugary foods are OK once in a while, as long as they're included in your child's meal plan.
Understanding what and how much to feed your child can be a challenge. A dietitian can help you create a meal plan that fits your child's health goals, food preferences and lifestyle.
Certain foods, such as those with a high sugar or fat content, may be more difficult to incorporate into your child's meal plan than healthier choices. For example, high-fat foods may cause a spike in blood sugar several hours after your child has eaten, because fat slows digestion.
Unfortunately, there's no set formula to tell you how your child's body will process different foods. But, as time passes, you'll learn more about how your child's favorites affect his or her blood sugar, and then you can learn to compensate for them.
Everyone needs regular aerobic exercise, and children who have type 1 diabetes are no exception. Encourage your child to get regular physical activity and, 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 up to 12 hours after exercise. 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.
Even if your child takes insulin and eats on a rigid schedule, the amount of sugar in his or her blood can change unpredictably. With help from your child's diabetes treatment team, you'll learn how your child's blood sugar level changes in response to:
- Food. Food can be a particular challenge for very young children with type 1 diabetes because they often don't finish what's on their plates. That's a problem if you've given the child an insulin injection to cover more food than he or she ate. Tell your doctor if this will be an issue with your child, so you and the doctor can come up with an insulin regimen that works for your family.
- Physical activity. The more active your child is, the lower his or her blood sugar level can get. To compensate, you might need to lower your child's insulin dose before unusual physical activity. Or your child may need a snack before exercise.
- Illness. Sickness has varying effects on your child's insulin need. Hormones produced during illness raise blood sugar levels, but reduced carbohydrate intake due to poor appetite or vomiting lowers the insulin requirement. Ask your doctor about a sick-day management plan.
- 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. Ask your doctor about good pre-bedtime blood sugar levels.
Signs of trouble
Despite your best efforts, sometimes problems will arise. Certain short-term complications of type 1 diabetes — such as low blood sugar, high blood sugar and ketoacidosis, generally diagnosed by finding ketones in the urine — require immediate care. Left untreated, these conditions can cause seizures and loss of consciousness (coma).
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.
Teach your child the symptoms of low blood sugar. When in doubt, he or she should always do a blood sugar test. Early signs and symptoms of low blood sugar include:
- Pale complexion
- Nervousness or anxiety
Later signs and symptoms of low blood sugar, which are sometimes mistaken for alcohol intoxication in teens and adults, include:
- Confusion or agitation
- Slurred speech
- Loss of coordination
- Odd behavior
- Loss of consciousness
If your child has a low blood sugar reading:
- Give your child fruit juice, glucose tablets, hard candy, regular (not diet) soda or another source of sugar
- Retest the blood sugar in about 15 minutes to make sure it has gone up into the normal range
- If the blood sugar level is still low, re-treat with more sugar and then retest in another 15 minutes
Left untreated, low blood sugar will cause your child to lose consciousness. If this occurs, the child may need an emergency injection of a hormone that stimulates the release of sugar into the blood (glucagon). Make sure your child always carries a source of fast-acting sugar.
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 hyperglycemia:
- Check your child's blood sugar
- You may need to administer an additional dose of insulin if blood sugar is above your child's target range
- Wait 15 minutes, and then recheck your child's blood sugar
- Adjust your child's meal plan or medications to prevent high blood sugar in the future
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.
Severe lack of insulin causes your child's body to produce ketones. Excess ketones build up in your child's blood and are spilled in the urine, a condition known as diabetic ketoacidosis (DKA). Untreated DKA can be life-threatening.
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.
Type 1 diabetes is a serious disease. Helping your child follow his or her diabetes treatment plan takes round-the-clock commitment and will initially require some significant lifestyle changes.
But your efforts are worthwhile. Careful management of type 1 diabetes can reduce your child's risk of serious — even life-threatening — 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
Above all, stay positive. 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.
There is no treatment that can replace insulin for anyone with type 1 diabetes. People who have type 1 diabetes must use injected insulin every day to survive.
Living with type 1 diabetes isn't easy — for you or for your child. Good diabetes management requires a lot of time and effort, especially in the beginning. There are several issues to address.
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. If that happens at a birthday party because your child forgot to take insulin before having a piece of cake, he or she could end up fighting with friends.
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 may help make your child feel less alone.
Mental health and substance abuse
People with diabetes have an increased risk of depression and anxiety, which may be why many diabetes specialists regularly include a social worker or psychologist as part of their diabetes care team.
Teenagers, in particular, may have a particularly hard time dealing with diabetes. 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.
Teens may also have a harder time telling friends that they have diabetes because they want to fit in. They may also experiment with drugs, alcohol and smoking, behaviors that can be even more dangerous for people with diabetes. Eating disorders and forgoing insulin to lose weight are other problems that can occur more often in the teen years.
Talk to your teen, or ask your teen's doctor to talk to your teen, about the effects of drugs, alcohol and smoking on someone with diabetes.
If you notice that your child or adolescent is persistently sad or pessimistic, or experiences dramatic changes in sleeping habits, friends or school performance, have your child assessed for depression. Also tell your child's doctor if you notice that your son or daughter is losing weight or doesn't seem to be eating well.
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 are also available.
Although support groups aren't for everyone, they can be good sources of information. Group members often know about the latest treatments and tend to share their own experiences or helpful information, such as where to find carbohydrate counts for your child's favorite takeout restaurant. 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
Complications from poorly controlled 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 control blood sugar levels, 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 might be 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. Your time with your doctor is limited, so it can be useful to prepare a list of questions you have about your child's care. Ask your doctor for a referral to a dietitian or a diabetes nurse educator if you have concerns that might be 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 glucose monitoring
- Insulin therapy — types of insulin used, timing of dosing and amount of dose
- Insulin administration — shots versus pumps
- Low blood sugar (hypoglycemia) — how to recognize and treat
- High blood sugar (hyperglycemia) — 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?
- Has your child had any low blood sugar episodes?
- What's a typical day's diet like?
- Is your child exercising? If so, how often?
- On average, how much insulin are you using daily?
Contact your child's doctor or diabetes educator between appointments if your child's blood sugar isn't well-controlled or if you're not sure what to do in a certain situation.