Colten and Dionne

Colten contracted the flu while on an overseas school trip a couple of years ago. He became very ill with ‘severe seizures and incredible head pain’ and, at times, paralysis.

Dionne, Colten’s mum, told the Royal Commission they ‘nearly lost him at one point’. Doctors diagnosed him as having autoimmune encephalitis and gave him medication which stopped the seizures. He was able to walk again. ‘They were incredible, I can’t thank them enough for what they did. They were there for him 24 hours a day.’

After three weeks Colten wanted to come home. The hospital contacted the children’s hospital near where he lived and sent videos supporting their diagnosis. But the doctors in Australia didn’t agree Colton had autoimmune encephalitis. They believed the seizures were behavioural, not epileptic. ‘I didn’t understand it. Neither did the [overseas] doctors.’

The overseas doctors reassured Dionne that as long as Colten continued the medication he would eventually recover and there wouldn’t be any long-term damage.

‘When the air ambulance people turned up they were awful,’ Dionne said. They told Colten he didn’t have autoimmune encephalitis and stopped his medication. During the flight Colten’s seizures returned ‘as bad as they were when they started’. Dionne ‘begged’ them to give him the medication, but they refused.

When Colten arrived at the children’s hospital he had to wait in emergency for several hours despite the hospital promising he would be taken to a ward immediately.

Doctors diagnosed him with functional neurological disorder (FND) without conducting tests, telling Colten his symptoms were ‘all in [his] head’. They refused Dionne’s repeated requests for tests and reviews telling her she was exacerbating his FND and associated behaviours. Colten’s father sided with the hospital. ‘They said he couldn’t get over his FND because of me, and I was not supporting them, I was causing more damage.’

Dionne felt like she was being attacked and vilified to the point where, for her own safety, she started recording the meetings she had with hospital staff.

Although Colten was still having seizures and using a wheelchair, the hospital allowed him to go home for a weekend to spend time with his family. On the Sunday the seizures became so severe Dionne called an ambulance. She begged them not to take him back to the children’s hospital, but they told her they couldn’t take him anywhere else. On the way to the hospital the ambulance officer rang the hospital. He told Dionne he would normally treat the seizure but ‘they have told me not to’.

Colten’s seizure continued for seven hours.

‘They let my son have seizures and a doctor didn’t even come and see him in emergency. We watched his brain shut down … He couldn’t speak. His paralysis was bad again. He just wasn’t with us properly, so it got to the point where he was in a nappy.’

Dionne believes Colten acquired a brain injury as a result of the seizures. He experiences ‘anger attacks’ and frequently absconds. His school has tried to help him but his father refuses to have him independently assessed. When Dionne has contacted specialists, as soon as they see the children’s hospital have diagnosed Colten with FND they refuse to see him.

Colten’s father believes Colten’s condition is ‘anxiety from his mother’. He said it’s a ‘mental illness and blaming my family’ – Dionne has attention deficit hyperactivity disorder and her mum has post-traumatic stress disorder.

Colten’s father recently engaged lawyers to prevent Dionne and her family from having contact with Colten.

Colten, now 16, lives on the streets and is ‘in trouble with the police’.

‘He has got brain damage. He is no longer at school. He can’t study. Where is he going? Where does he go next? To jail? Death?’