Evelina London develops first guidance for rare 'dancing eyes syndrome'

Baby Rafferty, who has 'dancing eyes' syndrome, with parents Sam and Nathan

Experts from Evelina London have published the first international guidance on how to diagnose and treat a rare condition, sometimes known as ‘dancing eyes and feet syndrome’.

The guidance was developed in collaboration with a worldwide panel of clinicians and families of children with the condition.

The mother of a boy who has the syndrome said the care she received has helped to get her little boy back.

Opsoclonus-myoclonus syndrome is a very rare disease, estimated to affect around one in every 3-5 million children. It is sometimes known as ‘dancing eye syndrome’, as it causes rapid and involuntary eye movements. Children can also be unsteady or lose their ability to stand and walk, and can have difficulty sleeping.

The condition typically affects children, and is often caused by a tumour, usually in the chest or abdomen. This causes the immune system to attack nerves around the body.

Evelina London is a centre of excellence in caring for children with opsoclonus-myoclonus syndrome. The condition is co-managed with the Royal Marsden Hospital, as half of children with this rare neurological syndrome have tumours.

Dr Ming Lim, consultant neurologist who led the development of the guidance, said: “Because opsoclonus-myoclonus syndrome is so rare, many clinical staff won’t have come across the condition in their careers, and it can be difficult to identify, and very difficult to research.”

“We hope that by creating this guidance, we can improve support for families and their clinicians. Families have told us that they have felt ‘seen and heard’ after reading it, so for those who have experienced the condition, it’s been emotional to see their experience reflected back. For children who are diagnosed in the future, it’s an important step that we are sharing knowledge globally and building consensus on the best approach.”

Rafferty Whitbread-Ward, from Deal in Kent, was diagnosed with the condition in autumn 2021. His mum, Samantha Whitbread, said she first noticed a change when he was around eight months old: “When Rafferty was first born he was a very happy boy and was meeting all of his milestones. But within the same month that he started crawling, we noticed the development dropping off.

“After a while he started to have tremors in his arms and legs and his eyes started shaking and rolling back in his head. He was referred to a specialist, but in the week of his first birthday, he was really shaky and distressed, so we had an emergency appointment at the hospital.”

After initial tests, Rafferty was referred to Evelina London Children’s Hospital where he was diagnosed as having opsoclonus-myoclonus syndrome and a tumour in his adrenal gland.

Samantha said: “It’s such a rare disease, it took a while to get the diagnosis, but as soon as they worked out what it was, it was amazing. We got straight onto a cancer treatment pathway at the Royal Marsden Hospital, he had surgery, steroid treatment and physical therapy. He’s improved so much and bit by bit we’ve got our little boy back.”

Rafferty, now 18 months old, is making good progress. His mum Samantha said it has been a difficult time, but that support from their family and the medical team has helped: “The staff at Evelina London were incredible. Because Rafferty was so young we couldn’t explain to him what was going on. Everyone we met took the time to explain what was happening and kept us as involved as possible. That helped to keep us calm, so that we could keep Rafferty calm.”