Joce’s Son Reuben

Diagnosed in September 2021 at age 2 years, 4 months old with A-Typical Kawasaki Disease. Resistant to treatment and required 2 rounds of IVIG and a week after discharge was readmitted for IV steroids.

Coronary Complications as a result – has Coronary Artery Aneurysm and severe dilation of Right Coronary Artery. Now on Anticoagulant Therapy – Warfarin long term.

Our son Reuben is an energetic, active little boy and first became unwell on Father’s Day 2021 – his first symptoms were vomiting excessively, lethargy, fever, irritability and a rash which started in his groin. He was seen by doctors that night who diagnosed gastro. The following day however the rash was spreading and his fevers were spiking – we again took him back to the doctors who diagnosed HV6 virus. A few hours later his lips were going blue and we didn’t have a good feeling so we attended the Emergency Department – they admitted him overnight due to his rash and fevers and initially suspected chicken pox. He was discharged on suspected chicken pox and we were told to keep in isolation, however the rash didn’t eventuate to chickenpox type blisters so it became evident that was not it – his fevers were still spiking, his irritability was so out of character and scary at times. He would bounce between complete lethargy to raging and thrashing around – at times I just cried feeling helpless. On day 4 he had began to have very blood shot eyes which alarmed me and his father and after some googling I saw Kawasaki Disease and became worried – we agreed that if he was still feverish the following morning we would go back to the Emergency Department. The following morning off we went and we were told it was just viral and to wait it out. The following day he developed a really nasty cough on top of everything he was already going through.

We felt helpless, each night my partner and I would talk about how this isn’t right, something isn’t right – but what could we do? We had seen the doctors 4 times in one week. One day I even thought my house must be haunted and my son must be possessed – it is the only logical explanation! By day 12 his lips were constantly going blue, he still had spiking fevers, and his breathing was very fast so we decided to attend a different hospital and thank goodness we did – we kept saying to them “we know what it looks like but it’s not what it seems – something is not right”. We discovered he had Bacterial Pneumonia and RSV (Respiratory Syncytial Virus) and that was what got him admitted, at this point we were relieved that he was getting help. Thankfully the following morning the Head of Paediatrics of that hospital was doing the rounds and sat with me and asked me to go over everything and that was when he was diagnosed with A-typical Kawasaki Disease – in this instance Dr. Google had been right the week before!

He commenced IVIG treatment that night but continued to get fevers and 2 nights later he had another round of IVIG, and 2 days after that had his first Echocardiogram. It showed moderate damage to his Coronary Arteries – so we were discharged to go home with Aspirin and a follow up Echocardiogram the next week. During that week he still wasn’t quite right, I was alarmed by his lips which were very purple, he had lost 3 kgs of his 15kg body weight but we were just so happy to have him somewhat back to himself . We attended the next Echo and left feeling quite hopeful that most of this was behind us till we received a 5.30pm call requesting us to come back tomorrow so that he could have a CT Angiogram under General Anaesthetic as they needed to confirm what they suspected – that it had moved to severe damage.