What is diabetes insipidus in children?

Diabetes insipidus (DI) is a condition caused by not enough antidiuretic hormone (ADH) in the body. ADH is also known as vasopressin. This is a hormone that helps the kidneys keep the correct amount of water in the body. The condition is also called “water diabetes.” This is because as with diabetes, ADH deficiency results in large volumes of urine. But unlike with diabetes mellitus, the frequent urination is not from high blood sugar.

ADH controls how much water is in urine that the kidneys make. ADH is secreted by a small gland at the base of the brain called the hypothalamus. It’s stored in the pituitary gland and then released into the bloodstream when needed. ADH lowers the amount of water the kidneys make into urine. This helps prevent dehydration. With diabetes insipidus, too much water is pulled from the blood by the kidneys. This causes the body to create a lot of watery urine and leads to thirst. ADH also affects the concentration of sodium in the blood. When ADH is low or isn't working correctly, sodium concentration increases. This is responsible for some symptoms of DI.

The disease has 4 types:

• Central diabetes insipidus. With this type, not enough ADH is made or secreted. This is most often because of damage to the hypothalamus or pituitary gland. Typical causes include injury to the brain, tumor, and rare genetic disorders.

• Nephrogenic diabetes insipidus. With this type, the kidneys don’t respond normally to ADH. This is most often because of medicines or chronic disorders. Some genetic disorders can affect the kidneys from birth. Other causes of kidney problems include kidney failure, sickle cell disease, and polycystic kidney disease.

• Dipsogenic diabetes insipidus. This is caused by a problem with your child's sense of thirst. It causes your child to be abnormally thirsty and drink a lot. Your child then makes more urine.

• Gestational diabetes insipidus. This occurs only during pregnancy and usually goes away after your baby is born. It may come back if you have another pregnancy.

What causes diabetes insipidus in a child?

Diabetes insipidus can be caused by conditions, such as:

• A hypothalamus gland that doesn’t make enough ADH

• A pituitary gland that doesn’t release enough ADH into the blood

• Damage to the hypothalamus or pituitary gland during surgery or radiation therapy

• Brain injury

• Brain tumor

• Tuberculosis

• Blockage in the arteries leading to the brain

• Inflammation of the brain (encephalitis) or the membranes that cover the brain and spinal cord (meningitis)

• Sarcoidosis 

• Family heredity

• Certain medicines, such as lithium

Which children are at risk for diabetes insipidus?

A child is more likely to get diabetes insipidus if they have a head injury, brain surgery, a brain tumor, kidney disease, or use certain medicines, such as lithium.

What are the symptoms of diabetes insipidus in a child?

Symptoms can occur a bit differently in each child. They can include:

• More thirst than normal

• More urination than normal or bedwetting

• Dehydration or weight loss

Babies with diabetes insipidus may show signs, such as:

• Irritability

• Poor feeding

• Failure to grow

• High fevers

The symptoms of diabetes insipidus can be like other health conditions, such as diabetes mellitus. Make sure your child sees their healthcare provider for a diagnosis.

How is diabetes insipidus diagnosed in a child?

The healthcare provider will ask about your child’s symptoms and health history. They may also ask about your family’s health history. The healthcare provider may ask you about your child’s daily fluid intake, diet, and bowel and bladder habits. Your child will have a physical exam. Your child may also have tests, such as:

• Urine tests. A single urine specimen may be used to check if the urine is diluted or concentrated. A child may need to collect urine over 24 hours to check for the amount of urine they make in a day.

• Blood test. This is done to measure salt (sodium) levels in the blood.

• Water deprivation test. This test is done in the hospital. It checks if dehydration occurs while a child doesn’t eat or drink.

• MRI of the pituitary. This test uses large magnets and a computer to make detailed images of tissues in the body without the use of X-ray. The test is done to look for problems with the hypothalamus or pituitary gland.

How is diabetes insipidus treated in a child?

Treatment depends on the cause. Treating the cause usually treats the diabetes insipidus.

Treatment may be done with synthetic ADH. This may be taken as a pill, injection, or nasal spray.

Your child must also drink plenty of fluids. This is to make up for the amount of fluids lost by the body through excess urine and to protect your child from dehydration. You may need to watch your child’s fluid intake and urine output. Your child's healthcare provider will check the amount of sodium in your child's blood often to make sure the medicine dose is correct.

What are possible complications of diabetes insipidus in a child?

If left untreated, diabetes insipidus can lead to problems in a child, such as:

• Brain damage

• Impaired mental function

• Hyperactivity

• Short attention span

• Poor growth

• Restlessness

How can I help my child live with diabetes insipidus?

Diabetes insipidus can be temporary or permanent. It depends on what is causing the disease. By managing the condition, a child with central diabetes insipidus can lead a full, healthy life. A child with nephrogenic diabetes insipidus can lead a relatively normal life with correct medical care, especially if the medical care is started early. Work with your child's healthcare providers to create an ongoing plan to manage your child’s condition.

When should I call my child's healthcare provider?

Talk with your child's healthcare provider if your child drinks and urinates a lot.

Key points about diabetes insipidus in children

• Diabetes insipidus is a condition caused by not enough antidiuretic hormone (ADH) in the body. This is a hormone that helps the kidneys keep the correct amount of water in the body.

• ADH lowers the amount of water the kidneys make into urine. This helps prevent dehydration. With diabetes insipidus, too much water is pulled from the blood by the kidneys. This causes the body to create a lot of watery urine, and leads to thirst.

• The diabetes insipidus has 4 types: central, nephrogenic, dipsogenic, and gestational. Each type acts differently, and each has different causes.

• Symptoms can include excessive thirst and urination.

• Your child may have a urine test, blood test, and a water deprivation test.

• Treatment may be done with synthetic ADH. This may be taken as a pill, shot (injection), or nasal spray. Other treatments include medicines that help the body make ADH or use it better.

• If left untreated, diabetes insipidus can lead to problems in a child, such as brain damage, excess of sodium, and poor growth.

• With treatment, a child with diabetes insipidus can lead a full, healthy life.

Next steps

Tips to help you get the most from a visit to your child’s healthcare provider:

• Know the reason for the visit and what you want to happen.

• Before your visit, write down questions you want answered.

• At the visit, write down the name of a new diagnosis and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you for your child.

• Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are.

• Ask if your child’s condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if your child does not take the medicine or have the test or procedure.

• If your child has a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.