9 things to know about ADEM — a rare inflammatory disorder likely linked to COVID-19

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Since the start of the COVID-19 pandemic, dozens of acute disseminated encephalomyelitis case reports have deemed the coronavirus as the trigger, NBC News reported Sept. 16.  

The rare neurological disorder, known as ADEM, is an inflammation of the brian and spinal cord that damages myelin — the protective layer surrounding nerve fibers. 

Eight more notes: 

1. In 50 percent to 75 percent of cases, the condition usually follows a viral infection. 

2. It affects both adults and children, though is more prevalent in children. 

3. ADEM symptoms typically come on quickly and include nausea and vomiting, headache, confusion, weakness, sensory changes, unsteadiness, trouble swallowing, trouble seeing and seizures. 

4. Most children who develop ADEM regain most function within a few months, though some develop a rare, severe form called acute hemorrhagic encephalomyelitis or AHEM. 

5. NBC reported on the case of an 8-year-old girl from Minnesota who developed AHEM after testing positive for COVID-19 in March. She is completely paralyzed and had part of her skull removed due to severe brain swelling. 

"We're seeing an extreme that is very, very rare, but it's currently something we would want to prevent," said Michael Pitt, MD, the patient's pediatrician at M Health Fairview University of Minnesota Masonic Children's Hospital in Minneapolis. "There are rare, serious side effects that we can prevent, if we take them seriously," Dr. Pitt told NBC, referring to the vaccine. 

6. Dr. Pitt told NBC that there have been dozens of case reports pinpointing COVID-19 as the trigger for ADEM.

7. Currently, there are no official guidelines for treating ADEM, though a course of intravenous corticosteroids followed by a dose of oral steroids are typically administered to suppress inflammation and speed recovery. 

8. A fraction of patients who are initially diagnosed with the condition may go on to develop MS, "but there is currently no method or known risk factors to predict whom those individuals will be," according to the National Institute of Neurological Disorders and Stroke.


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