The first international consensus has been reached on how to diagnose and treat a rare illness, often known as dancing eyes and feet syndrome.
In collaboration with a worldwide panel of experts and families of children with the condition, Evelina London Childrens Hospital developed the guidance. The mother of a young boy who has the syndrome believes the care she received has helped make her little boy back.
Opsoclonus-myoclonus syndrome is a very rare disease that is expected to affect around one in every 3-5 million children. It is sometimes known as dancing eye syndrome, because it allows patients to be rigid or lose their ability to stand and walk. It can also cause significant distress and difficulty sleeping.
The condition occurs when children are affected, and is often caused by a tumor, usually in the chest or abdomen, which causes the immune system to attack nerves around the body.
In autumn 2021, Rafferty Whitbread-Ward was diagnosed with opsoclonus-myoclonus syndrome, which she discovered when she was eight months old. During his first year of maturation, she said she noticed a change at around eight months old. Despite our impressions, the development continued to decline.
After a while, he started to have tremors in his arms and legs, and his eyes shook and rolled back in his head. He was then referred to a psychologist, but in the week of his first birthday, he was very shaky and distressed, so we had an emergency appointment at the hospital.
Rafferty was diagnosed with opsoclonus-myoclonus syndrome and a tumour in his adrenal gland after initial tests.
Samantha said: It''s such a difficult disease, but it took a while to diagnose it, so as soon as they discovered what it was, it was fantastic. He had surgery, steroids, and physical therapy, so he''s recovered.
Evelina London Childrens Hospital is a well-known hospital in the care of children with opsoclonus-myoclonus syndrome, which is partnered with the Royal Marsden Hospital in order to treat this rare neurological condition.
Dr Ming Lim, the author of the consensus, said that because opsoclonus-myoclonus syndrome is so rare, many clinical staff will not have discovered the condition in their careers, and it may be difficult to identify and very difficult to research.
We hope that by developing this guidance, we may increase the support for families and their clinicians. Families have informed us that they have felt known and heard after reading it, so for those who have received it, it was vital to see their experiences reflecting back. It is also important that we are sharing knowledge globally and forming consensus on the best strategy.
Rafferty, who is now 18 months old, has made great progress. His mother Samantha said the transition was difficult, but that their support from their parents and the medical team has helped. We decided to keep Rafferty as involved as possible. That made us feel safe and remained calm.