Mum’s warning over common children’s illness revealed

A mother has warned parents to be vigilant when it comes to a common children's illness after her daughter’s life was severely impacted by the disease.

A South Australian mother has warned parents to be vigilant when it comes to a common children's illness after her daughter’s life was severely impacted by the disease.

Amanda Robertson’s daughter Eve spent her third birthday at her very first play cafe, with her mum describing her as a “happy child playing”.

However, two days later the little girl came down with Hand, Foot and Mouth disease, which is a common virus in kids, causing sores in the mouth and a rash on the hands and feet.

Amanda took her to hospital where it was discovered she had a really bad case of the virus, but she was discharged after four days in hospital and referred to paediatrics outpatients for follow up.

Eve’s mum was told her daughter would recover from Hand, Foot and Mouth but it may take up to a year.

Amanda's daughter Eve got Hand, Foot and Mouth disease on her third birthday. Picture: Supplied

But, over the next 11 months her condition kept deteriorating. Eve kept having falls and hurting herself. She was having issues with her vision and kept seeing rainbows on the roof. She was also falling asleep everywhere.

“I was told by a GP she’s a typical three-year-old and they will fall over,” Amanda told news.com.au.

“And I understood that. But, I knew in my heart there was something that wasn’t right about her. I had her in childcare and they would tell me she was the one that was always sitting back and the other children would be playing.

“And to me, that was alarming. I knew there was something not right with my child.”

Amanda kept taking her little girl to GPs and finally, one referred her to a private pediatrician who ordered an MRI.

“Eve had that MRI June last year, and they found out that her brain was infected,” Amanda said.

“Her brain was so swollen that her ventricles on her right side were the size of a 54-year-old’s, and she was only four.”

It turned into enterovirus, and 11 months later it was discovered it had infected Eve's brain. Picture: Supplied

She was also diagnosed with a multiloculated pineal gland brain tumour on her pituitary gland. It is currently classed as benign but is closely monitored with MRIs as they can cause issues later on especially with puberty.

Amanda labelled the discovery as “shocking”, saying at the time Eve had been suffering from hallucinations and what the family believes to be absent seizures.

“It was heartbreaking, but also a sense of relief that I got somewhere,” she said.

“I think every parent has an instinct of ‘you need to listen to me. There is something wrong with my child’. But it’s not always the case as they think you might be overreacting.”

Eve has been left with a lifelong condition called hydrocephalus, which is a neurological disorder caused by an abnormal build-up of cerebrospinal fluid in the ventricles deep inside the brain.

The little girl needed an urgent surgery to try and reduce the size of her ventricles.

It’s meant Amanda and her husband have had to spend time apart as one stayed with Eve in hospital and the other looked after Eve’s big sister Sara. Every Monday, Eve is in hospital and has hydrotherapy to support her body. She also has to regularly see a neurologist. She still struggles with a lot of pain and fatigue.

She had to have emergency surgery. Picture: Supplied

However, it was more complex than that. Picture: Supplied

The only place where they got to feel like a family unit was in the Starlight Room, it allowed both of their children to just be little girls again.

“There’s times where I might take Sara out of school to come to Adelaide for the appointment with Eve,” Amanda said.

“And Sara and Eve know that it’s okay going to hospital because there is a safe, fun place for them to go and just be kids and not have to worry about medical stuff.”

She said it’s almost like a positive reward for Eve after being poked and prodded by the doctors.

Eve and Sara at Starlight. Picture: Supplied

The family is focusing on getting Eve, who is now five, ready for school. Amanda said it’s all a big unknown at the moment and ongoing MRIs to check the fluid on Eve’s brain and the tumour.

Amanda also warned parents to advocate for their children, saying she never would have expected that a common virus could have turned into the ordeal they have been through.

“We know friends who have had it, and we never, ever thought it would be this bad. I had no idea that Hand Foot and Mouth disease and RSV could infect your brain. It’s not something that’s spoken about,” she said.

For more information on Starlight, or to donate to Tour de Kids, click here.