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Treatments of ADEM

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Treatments

ADEM is a rare disease and no medications have been specifically approved by the US Food and Drug Administration (FDA) to treat it, however, treatment for ADEM could include the following:
  • High dose intravenous (IV) corticosteroids (typically methylprednisolone) are the front-line treatment for ADEM. These medications are usually given over a three- to five-day course, followed or not by a tapering dose of steroids given orally (by mouth) over a few days. The goal is to reduce inflammation and speed recovery from the disease.
  • If a patient does not improve after IV methylprednisolone, the next line treatment option may be a process called plasmapheresis or plasma exchange. This is a treatment in which the blood is circulated through a machine that withdraws components of the immune system from the blood circulation, reducing inflammation. It is usually a process which takes a few hours and is done every other day for 10 to 14 days, often as part of a hospital stay. It may require the placement of a central venous catheter to allow for blood to be removed from the system rapidly.
  • Another approach to treatment is IV immune globulin (IVIG). This is an intravenous treatment using a blood product that has been shown to reduce the activity in certain immune diseases, including ADEM. Treatment is usually given for a few hours daily over five days for ADEM.
  • In very rare and severe cases that do not respond to less toxic therapies (steroids, IVIG and/or plasma exchange), a chemotherapy called “cyclophosphamide” may be used for treatment.

Side effects and risks

Your healthcare provider will be able to explain possible risks or side effects of any proposed treatments. Some of the known side effects:
  • Patients on steroids need to be monitored for increased blood glucose, low potassium and sleep disturbance. There may be mood changes (irritability, crying, anxiety) when people are on steroid therapy. Other short-term reversible complications of steroid therapy include weight gain, flushed cheeks, facial swelling and a metallic taste (when using IV steroids).
  • The most common side effect of IVIG is headache. There is also a risk of reactions during the infusion, as with any blood product.  IVIG is also associated with an increased risk of clots and kidney injury.
  • Risks of plasmapheresis include discomfort from taking blood, sometimes a tendency to bleed due to a reduction in coagulation proteins, and infection or clotting of the line.

Prognosis

Although the long-term prognosis for children with ADEM varies, most children make a complete or nearly complete recovery, including those children with initially severe symptoms. For most children, recovery begins within days and continues for up to one year. Some patients can have residual symptoms such as blurred vision, weakness or numbness.
Steroid treatment can reduce some ongoing symptoms and may stop new symptoms from developing, although the latter is not proven.

Reviewed by Elias Sotirchos, MD November 2019

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