DESCRIPTION
The immune system is made up of immune cells. Immune cells usually fight off threats from the outside, such as viruses, bacteria, and fungi. In autoimmune diseases, immune cells attack the healthy cells of the body.
The nerves of the body are like electrical wires. They have a coating on the outside called myelin. In ADEM, immune cells attack the myelin coating on the nerves in the brain. This usually happens 4-14 days after an illness like a cough or a sore throat. In rare cases, it can occur after a vaccination.
DIAGNOSIS AND LABORATORY INVESTIGATIONS
In ADEM, pictures of the brain and/or spinal cord look abnormal. These pictures are created with magnetic resonance imaging, or MRI. MRI can show areas where myelin has been damaged. The damaged areas are called lesions. A medicine called contrast may be used to help see lesions.
The pattern of the lesions can help the doctor know that a patient has ADEM. It can distinguish ADEM from other diseases that affect myelin, like multiple sclerosis or neuromyelitis optica.
Lesions in the brain in ADEM can be very large. However, they will usually disappear completely with time and medicines. The size and number of lesions on an MRI does not predict how well a patient will recover after a diagnosis of ADEM.
Sometimes, the doctor will do more tests to confirm a diagnosis.
These may include:
Blood tests
A lumbar puncture
TREATMENT AND THERAPIES
If a child is diagnosed with ADEM, a doctor may offer medicines that change the way the immune system works.
These can include:
- Steroids
- Therapeutic plasma exchange (also called plasmapheresis)
- Immunoglobulin G, or antibodies from other people (known as IVIG; this is rare)
Other ways to support a patient can include:
Antibiotics and Antivirals
Initially, many patients with ADEM will receive medicines that help the body fight bacteria and viruses. This is because the symptoms of ADEM can look like the symptoms of a brain infection. For example, they can look like meningitis or encephalitis. Once the diagnosis of ADEM has been made, the patient usually no longer needs antibiotics.
Intubation or feeding tubes
Usually, children will not need long-term treatment to prevent future episodes of ADEM.
Resources
Siegel Rare Neuroimmune Association
The Siegel Rare Neuroimmune Association (SRNA) is a not-for-profit international organization dedicated to the support of children, adolescents, and adults with a spectrum of rare neuroimmune disorders including: Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON) and Transverse Myelitis (TM).
Their mission is to support individuals living with rare neuroimmune diagnoses and their families, promote awareness to empower patients, families, clinicians, and scientists, through education programs (such as the SRNA Quality of Life Family Camp for children and their families diagnosed with a rare neuroimmune disorder) and publications and, to build a collaborative and dedicated clinical care network and help advance scientific understanding and research.
Child Neurology Foundation (CNF) solicits resources from the community to be included on this webpage through an application process. CNF reserves the right to remove entities at any time if information is deemed inappropriate or inconsistent with the mission, vision, and values of CNF.
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