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Diabetes Insipidus

  • Here are some of the basics about diabetes insipidus:

    • Diabetes insipidus is a rare disorder of vasopressin (also called the antidiuretic hormone or ADH), a hormone that helps the kidneys regulate the amount of water in the body.

    • Normally, the pituitary gland releases vasopressin to decrease the amount of urine the kidneys send to the bladder, thus keeping you from getting dehydrated.

    If your child has diabetes insipidus, there’s either not enough

    vasopressin or his kidneys can’t respond to it normally, which means the body gets rid of more water in the urine than it should. This can be dangerous. 

    There are two basic kinds of diabetes insipidus: 

    • Central diabetes insipidus occurs when the body doesn’t produce (or release) enough vasopressin. It’s usually a result of a problem in the brain or central nervous system.
      • It’s by far the most common form of diabetes insipidus, affecting almost all of the children with the condition.
      • It is easily treated with medication.
         
    • Nephrogenic diabetes insipidus occurs when there’s a genetic or other problem that doesn’t allow the kidneys to respond normally to vasopressin.
      • This type of diabetes insipidus is much less common, and is more difficult to treat. 

    How Boston Children's Hospital approaches diabetes insipidus

    At Boston Children's, children with diabetes insipidus are treated through our General Endocrinology Program—a multidisciplinary program that provides comprehensive diagnosis, treatment and management of patients with disorders associated with the endocrine system, which is the system of glands, each of which secretes a type of hormone into the bloodstream to regulate the body.

    Our goal is to teach patients and their families how to effectively manage the condition, and to empower people with diabetes insipidus to live normal lives.

    Diabetes insipidus: Reviewed by Joseph Majzoub, MD
    ©Boston Children's Hospital; posted in 2012

  • How common is diabetes insipidus?
    It’s very rare, occurring in approximately 1 in 30,000 children. Among those children who have diabetes insipidus, nearly 98 percent have the central variety, while 2 percent have the harder-to-treat nephrogenic type of the condition. 

    Causes

    What causes diabetes insipidus?
    Both central and nephrogenic diabetes insipidus can be caused by several conditions, including:

    • Idiopathic (having no known cause)
      • approximately 30 to 50 percent of cases of diabetes insipidus are idiopathic
    • Tumor
    • Damage to the hypothalamus or pituitary gland during surgery
    • A hypothalamus that produces too little vasopressin)
    • A pituitary gland that fails to release vasopressin into the bloodstream)
    • Brain injury
    • Family heredity 

    Diabetes insipidus can also become worse or first become apparent during pregnancy, because hormones released from the placenta can break down vasopressin, which can lead to a deficiency.

    Symptoms

    What are the symptoms of diabetes insipidus?
    Each child may experience symptoms differently, but some of the most common symptoms of diabetes insipidus include: 

    • Excessive thirst
    • Excessive urine production— both during the day and at night
    • Dehydration 

    Infants with diabetes insipidus may also exhibit the following symptoms:

    • Irritability
    • Poor feeding
    • Failure to grow
    • High fevers

    When is diabetes insipidus diagnosed?
    Diabetes insipidus isn’t typically apparent at birth, but can be diagnosed when parents bring in an infant who is dehydrated. Other children are diagnosed with the condition after pituitary surgery, which can often cause a temporary form of diabetes insipidus.

    Are there any other complications my child could have from diabetes insipidus?
    Prompt diagnosis and treatment of diabetes insipidus in children is very important. If left untreated, the condition can lead to dehydration, which can cause brain damage or impaired mental function. 

    What is the long-term outlook for my child?
    Central diabetes insipidus can be a temporary or a permanent condition, depending on what’s causing it (for example, children who have pituitary surgery will often have central diabetes insipidus for one to two days after surgery). If the condition is permanent, it’s typically easily treated with a pill, so almost all children with central diabetes insipidus go on to lead full, healthy lives.

    Children with nephrogenic diabetes insipidus can also lead relatively normal lives with proper medical care and management. Treatment for nephrogenic diabetes typically involves a fairly simply regiment of lifestyle changes. That’s why it’s so important to have a thorough diagnosis by a specialist—and begin treatment early.

  • How is diabetes insipidus diagnosed?
    In addition to taking a complete medical history and physical examination, your child's physician will ask for details about the following: 

    • How much fluid he is drinking
    • How much and what kind of food he’s eating
    • How often and how regularly he goes to the bathroom (both bowel and bladder) 

    The following tests may also be used to diagnose diabetes insipidus:

    • Urine tests—These allow your doctor to compare how concentrated (or diluted) your child’s urine is.

    • Blood tests—If the blood is more concentrated than the urine, that’s a sign your child might have diabetes insipidus.

    • Water deprivation test—This test withholds water from your child for a short period of time to observe if dehydration occurs. If your child gets dehydrated more quickly than is normal, he may have diabetes insipidus.

    • Magnetic resonance imaging (MRI)—This imaging study allows your child’s doctor to check for pituitary abnormalities. 

    After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we will meet with you and your family to discuss the results and outline the best treatment options for your child.

  • The doctors and care team at Boston Children's Hospital specialize in family-centered care, which means that from your first visit, you¹ll work with a team of professionals who are committed to supporting all of your family's needs. 

    How does Boston Children's treat diabetes insipidus?
    It depends upon what's causing the condition. For example, if your child's diabetes insipidus is being caused by trauma from surgery, the condition might be temporary. We'll monitor your child and keep him well hydrated until he gets better.

    Permanent central diabetes insipidus is treated with medication, while treatment for nephrogenic diabetes insipidus is more complex and usually requires both medication and changes to your child's lifestyle. 


    Central diabetes insipidus

    Central diabetes insipidus can be effectively treated with a medication called desmopressin (DDAVP).

    • Your child will take DDAVP twice a day, which should control his diabetes insipidus and allow him to lead a healthy, active life. 


    Nephrogenic diabetes insipidus

    Nephrogrenic diabetes insipidus is not as easy to treat, but children with the condition can still lead relatively normal lives if they follow some simple rules:

    • Drink enough fluids to compensate for the excessive urinary output caused by the condition.
    • Eat a diet low in salt, which can help with water retention.

    Sometimes, other medications can be used to help control the condition, but this is something your physician will discuss in detail with you. 

    Will my child have follow-up appointments after treatment?
    Children with nephrogenic diabetes insipidus will visit an endocrinologist regularly for the rest of his life so his condition can be monitored.

    What makes Boston Children's treatment of diabetes insipidus different?
    The endocrinologists in Boston Children's General Endocrinology Program have a lot of experience diagnosing and treating this relatively rare condition.

    As one of the largest pediatric endocrinology programs in the world, we have 35 doctors who see more than 7,000 patients in 22,000 visits every year. We see many children with temporary or permanent diabetes insipidus brought on by brain surgery—and we know how to teach patients and their families how to manage their condition and live healthy lives.

    Coping and support 

    Boston Children's Hospital has many resources available for your whole family. 

  • Boston Children's Hospital’s Division of Endocrinology has one of the nation's most extensive research programs focused on pediatric endocrine disorders. With more than 50 researchers, we are attempting to unravel the genetic and biochemical underpinnings of the endocrine system. 

    We are constantly studying new ways to prevent premature births, improve diabetes management, control obesity, enhance our knowledge and treatment of growth and development disorders, and address other endocrine malfunctions that affect the health and quality of life of children.

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