An Australian mother-of-two has warned parents of a little-known disease that if left untreated could cause permanent damage to your child’s heart or even death.
Bindy Scott found out the hard way that the rash on her toddler Tommy’s body was more than just a viral infection.
Sharing painful photos of his chest, arms and back on her website, Mrs Scott, who is based in Queensland, explained how the unusual redness turned out to be a far greater danger to her little boy’s health than first thought.
Mother-of-two Bindy Scott found out the hard way that the rash on her son Tommy’s body (pictured) was more than just a viral infection
In October 2017 at their daughter’s birthday party, 22-month-old Tommy woke up a little bit ‘off’, with Mrs Scott describing him as a ‘bit grumbly and clingy’.
‘He enjoyed the party and spending time with his Nan, but he didn’t eat as much as normal and we all agreed it was probably due to a big molar he was cutting,’ she wrote.
‘That afternoon he started getting lethargic and that night was dreadful. He was awake screaming and had a 38C fever.
‘Sunday morning when we woke up he had a rash on his tummy. By the time we had finished breakfast and we changed his nappy again it had spread to his back. So off to the hospital emergency department we went.’
The doctor assumed it was a viral disease like hand, foot and mouth, but when the rash spread even further – and the family rushed back to the hospital – they guessed it might actually be an allergic reaction or scarlet fever.
Tommy’s symptoms continued to snowball: He began vomiting and had diarrhoea alongside the raging red rash that wouldn’t subside.
On October last year at their daughter’s birthday party, Tommy woke up a little bit ‘off’, with Mrs Scott describing him as a ‘bit grumbly and clingy’
On their third trip to the ER Tommy had a blood test and a cannula inserted to rebuild his lost fluids.
‘They ran many tests; blood cultures, x-ray and from memory I think they started a broad spectrum antibiotic,’ Mrs Scott said.
He was even transferred to another hospital as doctors scrambled to diagnose the 22-month-old.
‘The next few days were a blur with lots of tears. I sat in a hospital bed scared out of my mind holding our little man who just slept,’ she continued.
‘He didn’t want to do anything and he was so upset. I felt like a zombie and my heart was shattered. Days earlier he was his normal cheeky self. I was wracking my brain trying to think how he got sick and I didn’t stop praying for him to get better.
‘Wednesday was a rough day of more tests and this was the day he started to swell up. His little body went puffy, his hands and feet were like little balloons and his eyelids were so swollen.’
‘They ran many tests; blood cultures, x-ray and from memory I think they started a broad spectrum antibiotic,’ Mrs Scott (pictured) said
WHAT IS KAWASAKI DISEASE?
Kawasaki disease, named after the Japanese pediatrician who discovered the condition, is an inflammation of the blood vessels.
The condition most often affects children under five years old.
It typically manifests itself by a body rash, fever that lasts at least five days, swollen lymph nodes, lips, tongue, feet and hands, and red eyes.
In most cases, the inflammation doesn’t have long-lasting consequences. But in certain cases, the coronary artery or the heart muscle are damaged.
When these complications occur, patients can later suffer from aneurysms and heart attacks, which can be fatal.
Source: The American Heart Association
During those days the family waited patiently for blood test results to come back, before a paediatrician asked on Thursday evening whether Mrs Scott had heard of Kawasaki disease.
‘I hadn’t. She and the doctors she had been speaking to believed this is what he had, unfortunately there is no test for this disease – just ruling out other possible problems and that’s what we had been doing,’ she explained.
They decided to treat him for Kawasaki using intravenous immunoglobulin – a solution of human plasma proteins – which was ‘not at all dangerous for him to have’.
‘Saturday he did seem to pick up, he was more alert and playing. He was actually playing with toys,’ Mrs Scott said.
‘He ate more and just seemed brighter. We were so thankful that this treatment had seemed to work, if it hadn’t he would’ve had another round of it and if that failed, then he would receive a lumbar puncture – but thankfully we avoided that.’
Mrs Scott is sharing Tommy’s story before Kawasaki Awareness Day on January 26 in hopes other parents can be more aware of the symptoms
Mrs Scott is sharing Tommy’s story before Kawasaki Awareness Day on January 26 in hopes other parents can be more aware of the symptoms.
‘I want to encourage you, that if your child is sick and you are given one diagnosis and then they worsen or change – go back,’ she explained.
‘Keep going back until the treatment works or you see improvement. You don’t have to accept one opinion. We are our children’s advocates. We have to fight for them.
‘I knew each time in myself when he needed to go back to the hospital and I didn’t care if it turned out to be nothing, I would prefer to be known as the overcautious mother than regret not taking him or leaving it too late.
‘If we had just agreed it was some viral thing and tried to ride it out over a week, I hate to think of what the outcome could’ve been.’
You can find out more about the disease here and the symptoms here, or follow Mrs Scott on her website.