Two-year-old Ollerton boy battling 'constant spasms' struggled to get diagnosis

Baby Tristan Hutchings was suffering with movement issues and spasms when he was weeks old, causing “constant screaming” and leading to numerous hospital trips.

However, parents Adrian Hutchings and Sarah Huyton were told by doctors that their baby had a “severe milk allergy” and were advised to try different milks - to no avail.

The baby’s spasms still affected him and doctors were unsure about his condition, leading to numerous trips to the hospital before baby Tristan was eventually referred to a paediatrician - which took three months to get an appointment - and diagnosed with West Syndrome.

West Syndrome is better known as 'infantile spasms' and occurs when children suffer periodic seizures or spasms through abnormal brain activity.

Following the long process to receive diagnosis for baby Tristan, father Adrian has vowed to raise awareness for his son's condition and vowed to ensure "other parents don't have to go through what we did".

He said: “Tristan got his referral appointment at 6 months old and the paediatrician picked up that his development was way behind his peers. She referred for a MRI scan and agreed something wasn’t right.

“As parents we felt a sigh of relief – we were told that we wouldn’t be getting the appointment for at least 2-3 months but finally we were going to get results

“During the waiting period he was getting more and more distressed to the point where you couldn’t comfort him.”

The family had been researching possible reasons for Tristan’s condition, and came across a charity dedicated to children with infantile spasms, UKIST, which “described symptoms identical to Tristan”.

He added: “At eight months old we decided after seeing the UKIST awareness video on YouTube to take him to A&E. He was admitted and the doctor picked up on what we were seeing straight away.

“We received a phone call from a neurologist who said we must take Tristan into to Queen’s Medical Centre as he needed urgent treatment. Tristan was kept in for a week and diagnosed with West Syndrome, or infantile spasms.

“Luckily after treatment he is now six months free from a spasm, but he is way behind his peers in development.

“It will affect him for the rest of his life, he will probably have cerebral palsy and he can’t hold his head steady.

“With early diagnosis this might not have happened. I don’t want other people to go what we went through, the work UKIST do is so important and we need to raise awareness about the condition.”

Since Tristan's diagnosis, Adrian has become involved with fundraising and raising awareness for the work of UKIST - United Kingdom Infantile Spasm Trust.

Tristan has since been elected as the charity's 'warrior of the month' for June.

To find out more about the condition, visit ukinfantilespasmstrust.org/ukist-warrior-of-the-month-june/