A mum has spoken of getting her “little boy back” as doctors publish guidance on treating “dancing eye syndrome”, a neurological disease that attacks children.
Opsoclonus-myoclonus syndrome, which causes involuntary eye and muscle twitching, is so rare that many health professionals do not recognise it.
However, experts from Evelina London Children’s Hospital (ELCH) hope to help the five million sufferers by providing guidance for doctors around the world.
Samantha Whitbread, from Kent, said her son Rafferty had received “amazing” care after being diagnosed at the hospital in autumn 2021.
“When Rafferty was first born, he was a very happy boy and was meeting all of his milestones,” she said.
“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.
“In the week of his first birthday, he was really shaky and distressed, so we had an emergency appointment at the hospital.”
Experts at ELCH found Rafferty had a tumour in his adrenal gland that had triggered opsoclonus-myoclonus syndrome.
Ms Whitbread continued: “We got straight on to a cancer treatment pathway at the Royal Marsden Hospital, he had surgery, steroid treatment and physical therapy.
“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.
“He’s improved so much and bit by bit we’ve got our little boy back.”
Dr Ming Lim, who helped develop 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.
“We hope that by creating this guidance, we can improve support for families and their clinicians.”
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