This Singapore dad shares his daughter's journey with Kawasaki Disease...
Singapore dad Anthony Lee recently shared with us his daughter's journey through Kawasaki disease...
Lately, we have been hearing a lot about Kawasaki disease, especially after a paediatrician got suspended in Singapore for failing to diagnose a baby with the illness.
Singapore dad Anthony Lee recently shared with us his daughter's journey through Kawasaki disease. We are grateful to him for doing so, and we are sure it will help in creating greater awareness about this condition.
Anthony informs us, "Importantly, there can be atypical cases of Kawasaki Disease where not all symptoms will appear as usual. In most cases, we were told that they need 4 out of 5 symptoms to classify the child's condition as Kawasaki Disease. My daughter's Kawasaki Disease was an atypical case as she had only 2 symptoms which made the diagnosis even tougher."
Let's move on to what this dad has to say...
My daughter's Kawasaki Disease journey
"Our little girl, Ada Lee, is now aged 3.
She has always been a bright, cheerful and polite little girl. She loves going to nursery school and looks forward to it everyday. She is well-known for her happy and cheery behaviour.
In March, she complained of a pain in her left ear. She looked at us, pointed to her left ear and said "Pain pain". We knew something was wrong, as she had always had a high tolerance for pain.
This pain started shortly after she had had her hair washed in school. We did have a standing instruction with her school to not wash her hair, as we were concerned that she would take her nap with wet hair, and we also knew that with the number of children that had to be taken care of, it would be no easy task. Just like we had feared, water entered her ears and she started having pain.
We brought her to our family doctor who looked inside and informed us that water had caused her ear wax to expand inside, thus causing her pain. It had to be removed before her ear could be examined further.
We were given ear drops to soften the ear wax and also antibiotic ear drops to relieve the pain. Our doctor suspected that she had an ear infection and we were asked to bring her back to have her ears flushed for a better examination.
Her ears were eventually flushed and it was noted that she had a ear infection. We were instructed to continue with the antibiotics and ear wax softening ear drops.
On 12 March, she had her first fever at night and the next morning, we saw our family doctor again and were advised to give paracetamol. The fever went away on the same day and was not present on the next day.
However on 15 March, the fever came back with a vengeance and she complained of a neck pain. We brought her back to our doctor who noted no swelling and everything seemed normal. But on the same day, after the consultation, my wife felt a lump on the right side of her neck.
We brought her in again on the same day for the lump to be examined and it was thought be a lymph node swelling related to her ear infection, but it was on the opposite side of her ear infection. We were asked to monitor till at least Saturday and if the fever did not subside, we were asked to go to the Children's A&E.
On Saturday, we rushed her to hospital.
The final diagnosis
We went to NUH Children's A&E and after examination, they decided to admit her to investigate further.
When she was warded, her fever got worse even though Paracetamol and Ibuprofen were given. At the same time, they also gave her an IV of antibiotics to see if she would respond to it but it had no effect and eventually on the 3rd day, her eyes started turning red without any other symptoms, except for the ongoing fever. They ran several tests for inflammation and while the inflammation was there, she did not display any other classic Kawasaki Disease symptoms.
Every time she was given Paracetamol and Ibuprofen and she had a respite from fever, she would be back to her cheery self. Her cheery behaviour even gave doctors doubts about Kawasaki Disease as children who have it, are usually withdrawn and extremely irritable.
They were concerned that it might be something else. We had a consultation with the infectious disease team and the immunology & rheumatology team. The infectious disease team offered to change the antibiotics to see if it would help her.
The immunology consultant felt that it was most probably Kawasaki and we decided to go ahead with the IVIG treatment on her 6th day at the hospital. They did not offer IVIG prior to that, as there was no certainty that she really had Kawasaki disease, and hence, the medical team was concerned about the costs as well.
They also sent her for an echocardiogram to see if she was showing any signs of an aneurysm forming. Thankfully, there wasn't, but the cardiac consultant cautioned us that for Kawasaki Disease cases, problems will usually only show after 2 months. The nurse commented that it was amazing that she was still so co-operative as children affected by Kawasaki Disease were highly irritable and unable to stay still for the examination.
Within 24 hours after the IVIG was given, her fever subsided and continued to stay off. After a long time, we saw hope and felt some relief.
We were there for a total of 8 days, keeping 24 hours vigilance over her daily, watching helplessly as the fever assaulted her repeatedly and mercilessly, hearing her scream and cry when her IV plug had to be relocated, fearing her heart would be ruined and the rest of her life destroyed.
My daughter was finally discharged on a high dose of aspirin and ranitidine, which she had to take for 3 months.
It has been 4 months since the ordeal, and she is due for another echocardiogram soon. We hope that it will be a clear result. Our journey continues."
Mums and dads, we hope this story has been insightful to you about this disease. Share your thoughts with us on the topic of Kawasaki Disease in a comment.