Parents' warning over signs of rare epilepsy after baby forgot how to smile or recognise family

The parents of a little boy from Wigan with a rare form of epilepsy are urging other families to learn to spot the signs of the condition.

Doctors initially thought little Theo Yong-Ching was suffering from colic when he began pulling up and tensing his legs.

He had been sent away from A&E three times.

But Theo's parents felt something more serious was going on when the eight month old suddenly stopped smiling, and became unable to recognise his mum.

Eventually, a brain scan revealed he had infantile spasms syndrome - a severe form of epilepsy that most medics have never seen.

What is infantile spasms syndrome?

Infantile spasms is a rare condition that occurs in young children, usually under the age of one.

Around 400 babies a year are born with it.

It is identified by brief spasms or jerks which happen in "clusters" - these can affect the whole body or just the arms and legs. The spasms can look similar to common disorders such as colic or reflux, or a baby’s normal ‘startle’ reflex.

It's controlled with adult-sized doses of steroids plus anti-seizure drugs.

You can find out more by visiting the UK Infantile Spasms Trust website.

Andrew and Claire are thankful a consultant eventually recognised Theo's condition, which can be hard to identify.

Experts say to reduce the risk of long-term harm it needs early diagnosis using a brain scan.

Jenny Rawling, from the UK Infantile Spasms Trust, says early diagnosis is challenging, but critical.

"It shows a very characteristic brainwave pattern - and that's why it's so damaging, on the outside it doesn't look especially serious, but inside, there's complete chaos in their brain."

If undiagnosed and untreated for a period of time, it causes loss of skills, regression, or even permanent brain damage.

Claire and Andrew are now urging other parents to familiarise themselves with the possible symtoms.