Kawasaki Disorder is not a phobia of motorbikes - Although I jest in the title, this is no laughing matter! Kawasaki Disorder or Kawasaki Disease, is an illness that mainly affects children, typically under 5 years of age. The onset is sudden and the results, if left untreated, can be fatal.
Paige’s Story:
My 5 year old in 2014 was looking forward to her 6th birthday and cooking Daddy breakfast on Father’s day, when in September she awoke with a headache. I sent her to kindy as normal. She had been a healthy child in those first 5 years, with only the occasional sniffle or tummy bug. But all that was about to change.
I received a phone call from the school to pick her up, she had a fever and the headache was still there. Like most parents, I gave her Panadol and put her to bed. Next morning, there was little change so off to the GP who checked her over, her temp was 39.5. He told us if her temp hits 40 to go to hospital but in meantime Panadol and Nurofen every 4-6 hours. For the next 2 days, the medications seem to keep the temp down by a couple of degrees but it would spike again when meds wore off. She refused food of any kind. Literally gritted her teeth together but was happy to drink. Blood shot eyes and my mother- in-law commented about how ‘ruby” her lips were, “like she was wearing lipstick”.
Thursday of that week was the Father’s day stall at school. She woke with a temp of around 37.5 and begged me to send her to school for the stall. I Got a call from the school midday to pick her up. She was delirious, high temp and seeing faces in the concrete pavement. Straight to GP who diagnosed her with a Urinary Tract infection. He took samples and told us that “when the fever breaks she is on the mend”.
For the next 24 hours, the fever continued but the meds held it at bay every 4-6 hours. White, pimply, spots developed on her tongue (a condition known as Strawberry tongue) and a purplish rash began to spread over her lower torso. She complained of tummy pains and some mild vomiting, which I contributed to an empty stomach as she hadn’t eaten anything substantial in days.
Sunday, Father’s Day. She awoke with no temp but was nauseous and grey in colour. The ruby lips were gone and were now white. I rang GP access who advised me to get her to the ER immediately.
So instead of a Father’s day breakfast it was a rush to John Hunter Hospital. I recall walking into emergency and expecting to sit and wait for hours instead Emergency was empty. Just one couple with a baby being assessed by the lone triage nurse. I heard the nurse say to this couple; “I’m sorry but I don’t like the look of this child and need to leave you”. She called us over and took my daughter’s blood pressure. It was dangerously low and before I knew it the doors to the emergency ward flew open and medical staff came running. I stood aside, bewildered, as a doctor and nursing staff attempted to find a vein to attach a drip. My child’s veins had closed up. Her little body had gone into a state of sepsis, it was shutting itself down. Her kidneys and liver had failed and she was dying. They had to drill into her knee cap to attach a drip! A sound that still haunts me. My husband and I were asked question after question about our movements over that week, her diet, who or what she had come into contact with.
We knew it was serious when they called a social worker to comfort us. Paediatricians and surgeons all examined her and no clear indication of what was going on. The ER doc suggested it may be one of two things, a type of salmonella poisoning or Kawasaki’s. Paige was given two IVs of antibiotics and one of IVIG (blood plasma replacement, the only known treatment for Kawasaki). She stabilised after 4 hours in the ER and was sent to PICU. For the next 4 days in PICU I stayed by her side. She was subjected to some evasive tests. Medical staff were uncertain and did not give a definite diagnosis until day 4. Fluid had built up in her joints and cavities of the body, including her lungs. An ECG showed damage to her heart. And this is what Kawasaki does, it attacks the organs and finishes with the heart. If untreated may lead to heart failure. Most KD kids are left with aneurysms or dilation, thickening of the heart. Paige’s heart walls and arteries were twice the thickness they should be.
She had to learn to walk again as the fluid had settled in her ankles and knees and was taking Asprin for 6 months to thin her blood to help her damaged heart.
For the last 6 years, my child has been seen annually by a paediatrician and a cardiologist. Her heart is back to normal. She still has regular bouts of pain in her joints and a phobia of needles and hospitals.
I never waste an opportunity to talk to parents about recognising the symptoms of Kawasaki Disease. It is the leading cause of heart issues in children under 5. Paige is my miracle, my KD warrior, as we came so close to losing her on that Father’s day in 2014.
