By Tia Priest-Willimott

Canberra boy Max seems like every other four-year-old – he loves playing with Lego, jumping in leaves and riding his bike.

But his life hasn’t always been like this.

Fifteen months ago, Max was having seizures, at times up to seven a day.

“It started when he was two and a half and we had no indication that this was possible,” Max’s mum Amy Dunn says.

“We were playing on the floor in the loungeroom and he ran towards me and I thought he was just coming to give me a cuddle, but he may have sensed that something was not right,” she says.

“Then he just collapsed and started having an atonic chronic seizure. I had the paramedics on the phone and they were talking me through CPR because he wasn’t really breathing properly and the seizure had gone on for more than five minutes.

“Luckily he came out of that seizure and fell asleep on the floor and we went to hospital… Max had three more seizures in the next 24 hours in hospital.”

They were sent home with Max on one form of medication, but two weeks later it started getting worse.

This was the start of a very long six months for Amy and Max.

“On bad days, he was having seven plus seizures at all times of the day and night in clusters,” Amy says.

“He would have clusters of four to five a day for about five days in a row and then he’d get more stable, so every time that happened we had to go to hospital,” she says.

A month later, Max started having two more different types of seizures – drop attacks and jerk seizures.

Eventually, he was diagnosed with myoclonic atonic epilepsy, a rare and severe form of childhood epilepsy that affects about one in 10,000 children.

By this point, Max was on seven medications.

That’s when their dietitian at the hospital introduced them to the Ketogenic diet.

The Ketogenic diet was used by modern physicians as a treatment for epilepsy in the 1920s, but its use has declined as medicine progressed.

“At that stage, we were ready to try anything because the outlook for Max was really bad,” she says.

The diet worked wonders and Max is now 15 months seizure free.

Max is currently on the modified Atkins Keto diet, which means he can have as much protein as he wants, but he can’t have any fruit, bread, rice, pasta, legumes, beans or potatoes.

Thanks to the diet, Max has been weaned off most of his medications.

He is still on one form of medication, with their doctor advising Max won’t come off it until he’s been free of seizures for at least two years.

“As Max gets older, we’re slowly reducing his medication so that the brain gets used to not having as much as it needs,” Amy says.

“For a little boy like Max, being on seven medications twice a day, there were some really intense side effects that could’ve impacted his whole life and brain development,” she says.

“Now, because he hasn’t been having seizures and he’s not on so many medications he’s like a normal boy again – he’s at preschool two days a week and can do things without wearing his seizure helmet.”

While the Ketogenic diet was successful for Max, it isn’t effective for all children with epilepsy.

The diet is only suitable for children who have seizures that aren’t controlled by medication and works best for children with specific types of seizures, including myoclonic-atonic seizures.

The Sydney Children’s Hospital Network says studies show that around half of the children on the diet have more than 50 per cent fewer seizures, while about one in three children have around 90 power cent less seizures.

Thanks to the Keto diet, Max is loving life.

“The first time we went to the Treetops Adventure, Max was three and we were just watching Ellie, his sister, do it and he fell down in the middle of the pine forest and had a massive seizure,” Amy says.

“When we went there recently, he did it for the first time. He put his helmet on, he got his little carabiner and he took himself along the high ropes course. His little legs were shaking because he was working so hard, but he did it,” she says.

“It was so momentous.”

Epilepsy ACT , 6287 4555. Support is at epilepsyact.org.au