Welcome to our website!

The Dancing Eye Syndrome Support Group was formed in 1988 with the principal aim of providing a link for parents of children with D.E.S. both locally and nationally. The Dancing Eye Syndrome Trust provides support and information to families of children with Dancing Eye Syndrome.

OMS patient caregiver survey

If you’re an OMS patient caregiver, we’d be extremely grateful if you were able to give us some feedback. Please take a few minutes to answer the questions on the Family Education Guide Survey.  Your responses by March 10, 2018 would be greatly appreciated.

What is Dancing Eye Syndrome?

The Dancing Eye Syndrome (or opsoclonus-myoclonus) is so called because of the very abnormal eye movements which are almost invariably present in this rare condition. Unlike the oscillating movements of nystagmus, eye movements are chaotic and best described as dancing. They are jerky and correspond with jerky movements which develop in the limbs particularly the arms.

Affects and treatment

A very small proportion of affected children recover from Dancing Eye Syndrome (or opsoclonus-myoclonus) 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.

Are you looking for informal advice – or just someone to talk to?