Treatments for ADEM
What are the treatments for ADEM?
Since ADEM is a rare disease, no medications have been specifically approved to treat it and there are no guidelines for treatment yet. The standard of care for ADEM includes the following:
High dose intravenous (IV) corticosteroids (methyl-prednisolone or other steroid medications) 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, chemotherapy may be necessary to help recovery. Either cyclophosphamide or mitoxantrone have been used, but only if less toxic therapies are not effective.
Are there side effects or risks from treatments for ADEM?
Your healthcare provider will be able to explain possible risks or side effects of any proposed treatments. Some of the known side effects are as follows:
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 Solu-Medrol).
- IVIG has the same risks as any blood product (allergic reaction, infection); it also sometimes causes shortness of breath due to fluid overload. Rarely, patients lack an antibody important to the system and may react more strongly to IVIG.
Risks of plasmapheresis include discomfort from taking blood, sometimes a tendency to bleed due to a reduction in coagulation proteins, and infection of the line.
What is the prognosis for ADEM?
- Steroid treatment can reduce some ongoing symptoms and may stop new symptoms from developing although the latter is not proven.
- 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.