What is Cushing syndrome in children?

Cushing syndrome is a hormone disorder. It’s caused by having high levels of the hormone cortisol over a long time. Cushing syndrome is fairly rare. It most often affects adults who are 20 to 50 years old. But it can also occur in children. It is sometimes called hypercortisolism.

What causes Cushing syndrome in a child?

Cushing syndrome happens when there is too much cortisol in the body. The disorder often starts with the pituitary gland. A tumor in the gland makes too much adrenocorticotropin hormone. That causes the adrenal glands to make too many corticosteroids.

Another main cause is taking glucocorticoids medicine, such as prednisone or dexamethasone, for a long time. These medicines are used to treat chronic diseases, such as severe allergies, asthma, severe arthritis, or immune system disorders. Other causes of Cushing syndrome include:

• Certain kinds of cancer

• Tumor on an adrenal gland

• An inherited endocrine disorder

• Certain chronic conditions, such as inflammatory bowel disease, lupus, or rheumatoid arthritis

What are the symptoms of Cushing syndrome in a child?

Cushing syndrome may cause:

• Excess weight gain, especially in the upper body, face, and neck

• Fat pad on the back of the neck

• Red or purple streaks (striae) on the belly (abdomen)

• Thin arms and legs

• Very slow growth rate

• High blood pressure

• Fragile and thin skin

• Darkened color of the skin

• Acne

• Bruising

• Stretch marks on abdomen, thighs, buttocks, arms, and chest

• Bone and muscle weakness

• Severe fatigue

• High blood sugar

• Irritability and anxiety

• In girls: excessive hair growth and irregular or no menstrual period

• In boys: low sex drive and infertility

The symptoms of Cushing syndrome may be like other health conditions. Make sure your child sees their healthcare provider for a diagnosis.

How is Cushing syndrome diagnosed in a child?

The healthcare provider will ask about your child’s health history and do a physical exam. Your child may also need tests, such as:

• Blood tests. These are done to measure levels of cortisol.

• Salivary tests. These are also done to measure level of cortisol.

• Urine tests. These are also done to measure levels of cortisol.

• 24-hour urinary test. Urine is collected over a 24-hour period to test for cortisol.

• CT scan. This test uses a series of X-rays and a computer to make detailed images of the inside of the body. A CT scan shows images of any part of the body, including bones, muscles, fat, and organs.

• MRI. This test uses large magnets, radio waves, and a computer to make detailed images of the inside of the body.

• Dexamethasone suppression test. This test shows if there is excess cortisol It's usually one of the first tests done to evaluate for Cushing syndrome.

How is Cushing syndrome treated in a child?

Treatment will depend on your child’s symptoms, age, and general health. It will also depend on how severe the condition is.

Treatment may include:

• Changing the dose of glucocorticoid hormone medicine, or switching to a different medicine

• Surgery to remove a tumor on an adrenal gland or the pituitary gland

• Surgery to remove both adrenal glands (very rare)

• Medicines that block the excess production of cortisol

• Radiation treatment of the pituitary gland

• Chemotherapy or immunotherapy medicines (very rare)

What are possible complications of Cushing syndrome in a child?

Untreated Cushing syndrome may cause:

• Abnormal growth and development, especially sexual development

• High blood pressure

• An impaired immune system

• Diabetes

• Infertility

• Short stature

• Obesity

How can I help my child live with Cushing syndrome?

Cushing syndrome can affect a child's growth, development, and self-esteem. Getting treatment as soon as possible can help lessen problems. Make sure to work with your child's healthcare providers on a care plan that works for your child.

When should I call my child's healthcare provider?

Call your child's healthcare provider if your child has any symptoms of Cushing syndrome.

Key points about Cushing syndrome in children

• Cushing syndrome is a rare disorder caused by having high levels of cortisol over a long time.

• It’s caused by a tumor on the pituitary gland or adrenal gland, or taking some kinds of medicine.

• Cushing syndrome may cause excess weight, slow growth, and problems with sexual development.

• Treatment may include medicines or surgery.

• Cushing syndrome can affect a child's growth, development, and self-esteem. Getting treatment as soon as possible can help lessen problems.

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.