Acute disseminated encephalomyelitis (ADEM) is sudden inflammation in the brain and spinal cord. It causes inflammation of the protective covering of nerves in the brain and spinal cord (myelin sheath). The inflammation changes the way that nerve signals pass between the brain and spinal cord. This condition is usually a one-time event that will not occur again. It can be confused with the early symptoms of pediatric multiple sclerosis (MS).

What are the causes?

The exact cause of this condition is not known. Almost all cases follow some type of infection, especially one of these:

  • An infection in the nose, mouth, throat, or voice box (upper respiratory infection).

  • An infection in the stomach or intestines (gastrointestinal infection).

In rare cases, ADEM was associated with certain vaccines in the past, particularly smallpox and rabies vaccines. These vaccines have been modified, and no currently approved vaccines in the United States are associated with ADEM.

What are the signs or symptoms?

Symptoms of this condition usually develop quickly. The most common early symptoms are:

  • Fever.

  • Lack of energy.

  • Muscle pain.

  • Fussiness or irritability.

Other symptoms may include:

  • Headache.

  • Neck pain or stiff neck.

  • Weakness or numbness.

Severe symptoms of this condition include:

  • Nausea or vomiting.

  • Personality changes or confusion.

  • Trouble walking.

  • Eye pain, changes in vision, or loss of vision.

  • Not being able to move (paralysis).

  • Seizures.

  • Fainting or loss of consciousness.

How is this diagnosed?

This condition may be diagnosed based on your child’s symptoms and a physical exam. Your child may also have tests, such as:

  • A complete blood count (CBC).

  • A lumbar puncture. In this test, the health care provider inserts a needle into your child’s back to remove fluid that surrounds the brain and spinal cord. Then, the fluid is tested.

  • Imaging studies of the brain and spinal cord, such as an MRI or CT scan.

  • An electroencephalogram (EEG). In this procedure, a paste is used to attach wires and sensors to your child’s head. The wires and sensors are also attached to a monitor, and your child’s brain activity is recorded for a time.

How is this treated?

This condition is often treated in the hospital, which can include monitoring in the ICU. Treatment usually starts with steroid medicines that are given through an IV for 3–5 days. Other treatments may include the following:

  • If steroid treatment works, the IV steroids may be replaced with steroids that are given by mouth. Your child’s health care provider will gradually reduce the steroid dosage over days or weeks.

  • If steroids do not work, your child may need a type of procedure called a plasma exchange (plasmapheresis).

  • If other treatments do not work, your child may get a medicine called immunoglobulin through an IV.

Children who have seizures will be started on an anticonvulsant medicine.

Full recovery may take up to 6 months. In most cases, symptoms go away over time. For a small number of children, the symptoms may continue during recovery. If this happens, your child may need to work with a physical therapist to help maintain strength and range of motion.

Follow these instructions at home:

  • Give over-the-counter and prescription medicines only as told by your child’s health care provider.

  • Have your child return to a normal activity level gradually over several weeks. Ask your child’s health care provider what activity levels are safe for your child.

  • Keep all follow-up visits. This is important.

Where to find more information

  • National Institute of Neurological Disorders and Stroke: www.ninds.nih.gov

Contact a health care provider if your child:

  • Continues to have symptoms.

  • Has chills or a fever.

  • Has symptoms of an upper respiratory or gastrointestinal infection, such as:

    • A cough or sneezing.

    • A runny nose.

    • Fever.

    • Vomiting or diarrhea.

    • Stomach pain.

Get help right away if your child:

  • Has symptoms that get worse.

  • Has new symptoms.

  • Is hard to wake up.

  • Has a seizure.

  • Has trouble breathing.

These symptoms may represent a serious problem that is an emergency. Do not wait to see if the symptoms will go away. Get medical help right away. Call your local emergency services (911 in the U.S.).

Summary

  • Acute disseminated encephalomyelitis (ADEM) is sudden inflammation in the brain and spinal cord.

  • The exact cause of this condition is not known. Almost all cases follow some type of infection.

  • Treatment usually begins with steroids. These are given through an IV for 3–5 days, followed by steroids given by mouth. Your child’s health care provider will gradually reduce the dosage.

  • Full recovery may take up to 6 months. Follow recommendations from your health care provider about what activities are safe for your child.

This information is not intended to replace advice given to you by your health care provider. Make sure you discuss any questions you have with your health care provider.