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Learning About Congenital Adrenal Hyperplasia in Children

What is congenital adrenal hyperplasia?

Congenital adrenal hyperplasia (CAH) is a problem that affects how the adrenal glands work. The adrenal glands need an enzyme to make certain hormones. Children with CAH are missing or have low levels of this enzyme.

The hormones produced by the adrenal glands affect nearly every organ in the body. They help the body cope with stress, hold salt and water, and maintain blood pressure. They also affect sexual development.

CAH is a problem that is passed through genes. Most of the time it's found during routine newborn blood tests.

When a child has CAH, the child will need to take medicine each day to replace the missing hormones.

You may have just learned that your baby has CAH. You will get more information and support from the hospital staff.

What happens when a child has CAH?

A girl with CAH may have genitals that look more male than female when she is born. This happens because of missing or lower levels of certain hormones. As a result, the body makes more of other hormones, like the ones that cause male features. The missing hormones don't affect how male genitals are developed.

Both females and males with CAH may grow faster than normal. But they may stop growing sooner because of early puberty. Their adult height may be shorter. Daily medicine your child will take can help balance the hormones so your child's growth is closer to normal.

How is CAH treated?

Treatment is aimed at keeping hormone levels as balanced as possible. Your child will need to take medicine every day. It replaces the missing hormones. Taking the medicine is important because it can help prevent a serious problem called an adrenal crisis.

Girls who are born with male-looking genitals may have surgery to make their genitals look more female.

Make sure that any health professional who treats your child knows that your child has CAH. You may want your child to wear or carry medical identification that says your child has CAH.

What is an adrenal crisis?

An adrenal crisis is an emergency. Medical help is needed right away. Children with CAH are more likely to have an adrenal crisis, which can lead to shock and possibly death. A steep drop in blood pressure can happen when the body is in shock.

During an adrenal crisis, the body can't make enough cortisol to deal with extreme physical stress. An example of this type of stress is when a child is ill or injured. During these times, you will need to watch your child closely for adrenal crisis symptoms.

When should you call for help?

Call 911 anytime you think your child may need emergency care. For example, call if:

  • Your child has signs of an adrenal crisis. These may include:
    • Passing out (losing consciousness).
    • Severe vomiting.
    • Severe diarrhea.
    • Severe belly pain.
    • Looking very sick.
    • Not acting normally.

Call your doctor or nurse advice line now or seek immediate medical care if:

  • Your child is vomiting.
  • Your child has diarrhea.

Watch closely for changes in your child's health, and be sure to contact your doctor or nurse advice line if:

  • Your child has a poor appetite.
  • Your child is losing weight.

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