EXCLUSIVE: The photo all parents need to see: Girl, 3, is left fighting for her life and unable to walk, talk or eat after doctors misdiagnose a FLU virus as gastro
- A Sydney mum has shared the frightening story of her daughter’s health scare
- Maria Stroh took three-year-old Kivarni to hospital after she developed a fever
- Doctors diagnosed the three-year-old with gastro and sent the family home
- But days later, an MRI revealed life-threatening brain swelling – caused by the flu
- Kivarni lost her speech and mobility and is learning to walk, talk and eat again
- Ms Stroh urged parents to follow their gut and watch for neurological warnings
When Sydney woman Maria Stroh struggled to get her daughter Kivarni’s temperature under control, she took the three-year-old to the emergency room.
After a series of blood tests, doctors diagnosed the toddler with gastroenteritis and discharged Kivarni 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.
Maria Stroh (left) grew concerned about her three-year-old daughter Kivarni (right) when her temperature soared above 41 in late September
After a misdiagnosis of gastroenteritis, an MRI showed life-threatening lesions and swelling on little Kivarni’s brain caused by the common flu virus
‘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.’
Despite the toddler vomiting repeatedly and becoming unable to support herself, doctors discharged her with Hydrolite to combat dehydration
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.
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WHAT IS ACUTE NECROTISING ENCEPHALOPATHY?
Acute Necrotising Encephalopathy (ANE) is a rare brain disease caused by a severe viral infection.
Historically, the condition primarily affected previously healthy Japanese, Taiwanese and other East Asian infants, but in modern times has been diagnosed in children from all corners of the world.
Symptoms of the viral infection, including fever, respiratory difficulties and gastroenteritis, are usually followed by seizures, lapse of consciousness and the development of a coma, liver failure and neurological damage.
ANE is thought to be caused by both environmental and genetic factors, and generally develops secondary to viral infections like influenza.
Source: US National Library of Medicine
Previously healthy Kivarni lost her speech and mobility due to Acute Necrotising Encephalopathy, and is now re-learning how to walk, talk, eat and swallow
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.
‘Our older girl Cali had a few breakdowns, she was distraught – it was really hard on her with my husband and I living separately between the hospital and at home.’
Ms Stroh said the experience was terrifying and a difficult period for her eldest daughter Cali (right), and urged parents to be vigilant in monitoring warning signs in young children
Asked about the advice she would give to parents concerned about their child’s well being or unusual symptoms, 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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