Sydney Mum shares terrifying experience after her toddlers life threatening illness was dismissed as just a bout of gastro.
Maria Stroh shared how after she struggled to get her daughter Kivarni’s temperature under control, she took her three-year-old to the emergency room.
A series of blood tests later, doctors diagnosed the toddler with gastroenteritis and discharged her with sachets of Hydrolite to fight dehydration.
The next morning, she lost the use of her limbs and fell unconscious.
Rushing back to hospital, an MRI revealed life-threatening swelling and lesions on the brain – a rare condition known as Acute Necrotising Encephalopathy – caused by the influenza virus, which rendered the toddler unable to walk, talk or swallow.
Speaking to Femail, Ms Stroh, 30, shared the frightening story behind Kivarni’s illness, the challenging road to recovery as well as her message to parents about the danger of the flu – even if your child is vaccinated.
‘We thought it was just another cold she picked up from kindy, so we gave her some Nurofen but I started to worry when it got much higher than usual,’ Ms Stroh told Daily Mail Australia.
‘She was drowsy and started to wet herself too, which is completely out of character.’
When Kivarni’s fever reached more than 41.3 in late September, she and husband Ryan rushed her to the emergency room.
But despite their little one vomiting repeatedly, shivering uncontrollably and being unable to support herself walking, blood tests showed no anomalies and medical staff discharged her with a diagnosis of gastroenteritis.
‘Once she was able to keep fluids down they let us go home, but later that night Kivarni woke up in pain.
‘The next morning we took her downstairs to the lounge and she couldn’t pick anything up, she had no coordination and she more or less fell unconscious.’
Back at the hospital for over 12 hours, staff ran numerous tests including CT scans and lumbar punctures before sedating Kivarni into an induced coma and transporting her to a larger regional facility.
‘From the initial CT scan they thought there was just swelling in the back of the brain, but when they ran the MRI the following day they discovered lesions and more severe swelling.’
Kivarni was diagnosed with Acute Necrotising Encephalopathy caused by the influenza A virus, a strain of the flu which doctors said her system ‘couldn’t handle’ – despite the tot receiving the flu shot.
Miracle she survived
After a course of high dosage immune suppressing steroids and an anti-viral shot to bring down swelling, Kivarni has made what her mum and medical professionals call ‘an actual miracle’.
‘We know other parents who have kids with ANE and it’s been completely different – we were only in hospital for six weeks, no one believed she would recover so quickly,’ Ms Stroh said.
But despite her swift turn around, previously healthy Kivarni lost her speech and mobility because of ANE and is now re-learning how to walk, talk, swallow and eat again.
‘Her neck control was also gone and she couldn’t make eye contact. That’s back to normal now but we’re still doing occupational therapy – she has some difficulties with her right hand and right leg but it’s coming along with every session.’
‘Our paediatrician said the MRI was one of the worst he’d ever seen – it’s still hard to believe everything that’s happened, we were really living minute by minute.’
Her advice to parents
Ms Stroh said the first port of call is to get a flu shot for each of your kids.
‘That’s obviously first and foremost, but also be aware of the neurological signs of these lesser known conditions.
‘If their temperature is crazy high or they start to walk funny, wet the bed or anything out of character – go straight to the hospital.
‘You know yourself as a mother when something is just a bit off, it’s like a gut feeling.
‘Every parent knows their child better than anyone so listen to your instincts and don’t accept something if you have doubts.’
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