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Acute disseminated encephalomyelitis (ADEM) involves a brief but intense attack of inflammation (swelling) in the brain and spinal cord that damages myelin. Myelin is the protective covering of your nerve fibers. Myelin is also called white matter due to its color. Because ADEM affects myelin, it is a type of a "demyelinating" disorder.
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The symptoms of ADEM come on quickly. You may feel tired or irritable at first. It is also common to have a viral illness with fever a few days to a few weeks before the beginning of the symptoms. Other symptoms may include:
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- nausea and vomiting
- headache
- confusion
- weakness
- ataxia or unsteady walk
- sensory changes, including numbness, tingling, or other unusual sensations
- optic neuritis or trouble with your vision
- seizures
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The location of the inflammation (swelling) within the brain and spinal cord determines what symptoms occur.
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- ADEM is an "autoimmune" condition that often follows an infection such as a cold. Your immune system protects your body from things like bacteria and viruses. Autoimmune diseases confuse your body's immune system. Instead of fighting against bacteria or viruses, it attacks your healthy cells and tissue. In ADEM, your immune system reacts against your brain and spinal cord. Autoimmunity is not contagious, but may be genetic (inherited from parents).
- ADEM may also follow a vaccination, although this is rare.
- In some cases of ADEM, a specific trigger/cause cannot be identified.
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There is not one specific test that is used to diagnose ADEM. There are several exams and tests that your doctors must look at including:
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- Your child's medical history
- A neurological examination;
- Brain MRI scans;
- A lumbar puncture (spinal tap) to make sure that there is not an infection in the spinal fluid, such as meningitis or encephalitis;
- An EEG if seizures are suspected;
- Blood tests to look for infectious triggers and for other conditions which can be confused with ADEM.
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The location of the inflammation (swelling) within the brain and spinal cord determines what symptoms occur.
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Although ADEM can occur at any age, children are more likely than adults to have ADEM. In one study, the yearly incidence of ADEM was 4 cases per one million people.
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Medications are used to reduce the inflammation (swelling) in the brain and spinal cord. The main medication that is used is called methylprednisolone (Solu-medrol�), which is a corticosteroid given by IV once a day for three to five days. This medication is completely different from the illegal steroids that some athletes use.
Most children with ADEM improve with high doses of methylprednisolone. If this medication does not work, there are other treatments that can be tried (plasmapheresis or intravenous immunoglobulin therapy).
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Most children tolerate the steroids (the medication) very well. Some children can develop temporary moodiness or other behavioral changes. Steroids can also cause increases in blood pressure and blood sugar, which your doctors and nurses will check for and treat if necessary. Steroids can also irritate your stomach lining. A medication such as ranitidine (Zantac�) will be given to prevent this stomach irritation.
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Some children will be placed on a steroid called prednisone for a short period of time. Your child may also be prescribed a medication to prevent stomach irritation.
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Steroid treatment can reduce some symptoms and stop new symptoms from developing. 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.
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Most children return to their baseline school performance. However, some children may have new difficulty with their school work. This may be due to several factors, including missed school days during the illness, as well as effects of the illness itself. If you notice changes in your childs school performance, it is important to let your doctors and nurses know so that they can work with the school to develop an educational plan.
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No. In approximately 80% of patients, ADEM occurs only once. In some patients, it can re-occur. When it re-occurs, the symptoms can be identical to the initial episode, but can also be different. It is not known why patients develop ADEM with certain infections at certain times. If you notice symptoms during an infection that you think are unusual, such as confusion, changes in vision, weakness, numbness, or imbalance, it is important to notify your doctor immediately.
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Both ADEM and MS involve autoimmune responses to myelin in the brain and spinal cord. They are both "demyelinating" disorders. Symptoms common to both disorders include loss of vision, weakness, numbness and loss of balance. Corticosteroids are used to treat attacks of ADEM and MS.
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Although children can develop MS, it is much more common in adults. Common symptoms of ADEM such as fever, headache and confusion, are not usually seen in MS. There are also clues on brain MRI to distinguish ADEM from MS. Most importantly, ADEM typically occurs only once, while patients with MS have further, repeated attacks of inflammation in the brain and spinal cord. Most patients with MS are treated with ongoing medication to prevent such attacks. Patients with ADEM do not require such medication.
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Although it is uncommon, children who initially have ADEM can later develop MS. Therefore, it is important to have ongoing follow up with your doctor. If you notice new symptoms, such as visual loss, weakness, numbness or loss of balance, it is important to let your doctor know immediately.
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- After discharge from the hospital, some children go to a rehabilitation hospital to work on things like strength and balance.
- Some children go home and work with a physical therapist.
- It is important to follow up with your neurologist in the outpatient clinic. The neurologist will check your child's neurological examination. S/he will also perform a follow-up brain and/or spinal cord MRI.
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In most children, the abnormalities on the MRI will significantly improve, but will not go away completely. Thus, some areas will have a small "scar." Your doctor will use the follow-up MRI to make sure that there are no new abnormalities developing.
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Acute Disseminated Encephalomyelitis
