Emilio’s journey with KD started on Sunday, Father’s Day 2023 at just 9 months old.
He had a temperature of 38 which we though was due to teething or a cold. This temperature was continuous for the next 7 days and would not go down with either Panadol and /or Nurofen.
By that Saturday, we took him to our local GP in the morning as he had woken up with spots on his tummy. The GP said, “there is something wrong with him, take him straight to ED with this letter, ED can think I am crazy but I know there is something wrong with him”.
We arrived at Westmead Children’s Hospital ED to a full waiting room by the afternoon. By the time we were given a bed in ED, the spots had increased and Emilio was very irritable and would not settle.
While in ED I overhead the head nurse talking to the nurse that was looking after him advising her “to send him home” as there was nothing wrong with him (only standard observations were done). Our nurse insisted to the head nurse that he stay as “he just does not look good”.
He was finally admitted to the short stay wing late Saturday night. The next couple of days were a blur as he became even more unwell and restless. There were doctors coming and going continuously as they did not know what was going on with him and his condition was getting worse.
Eventually I overhead a nurse say that the doctor believed he had something called “KD”, which naturally, we had never heard of.
The Doctors eventually told me that there was no test for KD and that they were waiting for the 5th symptoms to appear before they started treatment on him (he already had 4 of the symptoms).
Long story short, when the doctors eventually did an ultrasound, it revealed that 4 arteries were swollen. Even with these results, the doctors still wanted to wait for more blood tests. I advocated so strongly for my son to begin KD treatment before they wanted to do new blood tests. The doctors finally agreed and told me that the only reason they were starting KD treatment was because I advocated for him.
The hospital said that my son was an “out of the box case” because of his age and also because he required two rounds of IVIG and also steroid treatment. He was in hospital for two weeks. The hospital also apologised for delaying treatment and told me again that I had advocated for my son very well.
When we finally arrived home, he was on steroid treatment for some time, the recovery process was very slow as there were still multiple visits to the ED as his hands kept swelling up and he suffered from severe PTSD as he would wake up screaming at night and was unable to extend his arms or legs in the morning.
Fast forward to today and he is in the clear from KD with no longer team effects. Despite having some Global Developmental Delays (GDD) and most recently being diagnosed with Level 2 Autism, he is a happy, health, cheeky 3-year-old little boy.
