What is acute disseminated encephalomyelitis (ADEM)?

ADEM- Acute disseminated encephalomyelitis is a rare form of brain and spinal cord inflammation that occurs mainly in children. It damages the sheath covering nerve fibers-myelin.

Symptoms are sometimes severe but usually treatable. Most individuals fully recover and do not experience another attack. 

What are the symptoms of ADEM?

ADEM symptoms typically begin following a viral or bacterial infection. The symptoms and signs depend on where the inflammation is and can include:

• Fever.
• Head pain.
• Nausea or vomiting.
• Confusion.
• Weakness.

Some neurological signs include the following:

• Difficulty with eating.
• Optic neuritis causes loss of vision.
• Tingling or numbness in your legs and arms.
• Weak muscles.
• Dysarthria.
• Trouble with walking.

Your signs can vary greatly, as can their severity.

What causes acute disseminated encephalomyelitis (ADEM)?

No one knows what exactly causes ADEM. Based on research, an infection might make your immune system react to a threat in a way that isn't normal, leading to ADEM signs. Some viruses and germs can make you sick, and your immune system fights to get rid of them. If you have ADEM, your immune system will mistakenly identify certain parts of your central nervous system as bacteria or viruses and attack them. The inflammation (swelling) that follows causes the symptoms of ADEM.

About 70% to 80% of people diagnosed with ADEM have an infection or illness before they develop ADEM symptoms. Most of the cases of ADEM occur 7 to 14 days after the infection has taken place. Some infections associated with ADEM are:

• Flu
• The measles and mumps.
• Rubella.
• Chickenpox or itchy skin.
• Epstein-Barr virus.
• The cytomegalovirus.
• The virus that causes herpes.

While many different bacteria, viruses and other infections are associated with ADEM, the cause does not seem to be due to any single infectious agent.

A more recently identified cause of ADEM, particularly in children, is myelin oligodendrocyte antibody-associated disease (MOGAD). This is believed to be an autoimmune disorder that attacks the central nervous system and sometimes causes ADEM.

What are the risks and complications associated with ADEM?

ADEM can be developed in anybody. Kids are more likely than adults to have it. You are more likely to get ADEM if you have been sick lately.

Some problems that can happen with ADEM are:

• Loss of memory.
• Cognitive processing takes longer.
• Coma.

Very rarely, ADEM signs can end in death.

Symptoms that may not go away after treatment may include:

• Having bad headaches.
• Being numb.
• Not being able to coordinate.
• Seeing blurry.

How do you diagnose if someone has acute disseminated encephalomyelitis?

There is no single test that alone can be used to determine acute disseminated encephalomyelitis (ADEM). The doctor should consider several studies and tests, including but not limited to:

• The medical history of your child
• A study of the brain
• MRI scans of the brain
• A spinal tap (lumbar puncture) is to check for an illness in the spinal fluid, such as meningitis or encephalitis.
• An EEG, if seizures are not likely,
• Blood tests are done to look for infectious agents and other diseases that might resemble ADEM.

How is ADEM treated?

The main aim of treating ADEM is getting rid of inflammation in your brain and spinal cord. Treatment may include:

• Steroid medications: Steroid medication that is administered by vein intravenously is often the first choice in managing ADEM. One would probably need more than a few injections and then possibly oral steroids, which come as tablets you take orally, to complete the treatment.
• IVIG, or intravenous immune globulin, is an antibody treatment administered via IV. A volunteer donates the plasma.
• Plasma exchange: For plasma exchange or plasmapheresis, your blood is passed through a machine that removes some parts of it to make your defense system less active. For this treatment, blood is taken from a vein in one arm, passed through a machine, and then returned to a vein in the other arm. This whole process could take several hours, and you might need more than one time.

Researchers are still researching this condition to understand more about it and to discover new ways of treating it so that people can be alleviated.

Are there any side effects from the medication?

When you are on steroids for a short period, you are likely to experience these short-term side effects:

• High blood glucose levels.
• Low potassium levels.
• Sleep disturbances.
• Changes in mood (including irritability, crying, and even anxiety).
• Weight gain.
• Flushed cheeks.
• There was a metallic taste in my mouth.

Side effects may include some complications of intravenous immunoglobulin therapy:

• An allergic reaction.
• Infection.
• Shortness of breath.
• Thrombosis (Blood clots).
• Renal damages (Kidney injury).
• Headaches.

Problems of plasmapheresis may include:

• Bleeding
• Infection
• Discomfort
• Kidney damage
• Ischemia (when a part of your body does not get enough blood)

How soon will I feel better after treatment?

Most people with ADEM improve a few days after finishing treatment. Depending on your symptoms are, you might take six months or longer to fully recover. Some people, however, cannot recover. 

Can ADEM be prevented?

There is no method of prevention for ADEM. However, you can avoid infection with viral and bacteria-causing germs by maintaining personal hygiene.

What is the prognosis for ADEM?

The majority of patients diagnosed with ADEM have a near-full recovery after treatment. Extremely rarely, inflammation may be fatal. Your doctor can tell you much more regarding your prognosis.

When to seek medical care?

See medical care when you experience ADEM symptoms, particularly after an infection.

What questions should I ask my doctor?

• What can I do to prepare for testing?
• What is the type of treatment?
• Are there any side effects from this treatment?
• Will my symptoms linger after treatment?

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