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Dancing Eye Syndrome Support Trust | United Kingdom
 

Affects & Treatment


A very small proportion of affected children recover spontaneously, that is, without medical intervention. However, the majority require medication.

The most useful group of drugs which have been found to be effective are steroids and ACTH, a hormone which stimulates the adrenal glands to produce steroid. Using this medication, children improve comparatively quickly and abnormal movements are usually abolished within a month of starting treatment. The youngsters become happier and abnormal movements are abolished. Unfortunately the majority of children are left with some degree of learning and/or behavioural disability. There is no evidence that the dose or choice of drugs influence this disappointing outcome in respect of learning or behaviour and the reason for this is the subject of significant research.

Treatment can usually be completed within six months but in some children, medication has to continue for much longer-even years. Sometimes in children who have responded favourably, relapses are triggered by trivial viral infections.

For all children who are treated with steroid there is a need to establish where the balance lies as between benefits of treatment versus the side-effects of powerful hormonal drugs.

Research is now concentrating on exploring the mechanism of the disease, the identification of the immune process, and trial of alternative drugs which regulate immune disorders.

For details of the support group in the US, please visit: http://www.geocities.com/opso-myoclonus

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Dancing Eye/OMS Workshop Summary - April 2016



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