Monday, August 17, 2015

The dreaded Kawasaki, when it isn't a motorbike brand.

Kawasaki? That sure sounded like brand of motorbikes, and I didn’t know until end of last year, that it was also the name of a disease. But I wished that I never found out the way I did. 

We just happened to return from a family holiday to Tokyo in Sept last year, our first ever trip to Japan and we had a great time there. Louie was just 5 months old then but we decided to bring him along as well. It might have been coincidental, but exactly 2 months after our trip, Louie came down a low-grade fever for about 4 days. We didn’t think much of it then, for his appetite was still good and he wasn’t lethargic or anything. We have had our fair share of experience with the usual “no medication for infants, he/she will just have to sit out the fever” type of advice /conclusion from family doctors and PD with his older siblings. Hence that was what we did, trying to sit the fever out, but it didn't. 

Our first trip to Japan, with the entire family no less.
My wife was the one who noticed that it was different with Louie this time round, as he had developed rashes all over his body and his hands and feet were swollen as well. She brought him to the PD and was referred to the hospital as a suspected case of Kawasaki disease which was a very serious-sounding name to us and had me googling about it. And what I found was that it is basically a disease with no known causes and there are also no tests for it. The only way it can be diagnosed is test by exclusion. Meaning that Louie would have to be tested for all other common bacterial or virus infection to be a confirmed Kawasaki patient. In extreme cases, it can even cause death and those who recover from it may still suffer from coronary problems later. 

Louie on the first day of admission. You can see that his lips were all red and dry. Cheeks were also rosy and had a constant fever despite me sponging him down the whole night through.
We were given two choices by the PD, go to Mount Alvernia, a private hospital where they would have specialists who deals with Kawasaki, or to the public KK Hospital. By a stroke of luck, I had actually bought hospitalization plan for all of us even before Louie's birth (that included Louie automatically after he was born). However the kids were only covered up to “A” class in public hospitals. Hence if I were to admit Louie to Mt Alvernia, we would probably have to fork out many thousands of dollars extra. We ended up going to KK instead. So parents, please ensure that you have proper medical / hospitalization coverage for everyone in the family and do buy the best you can afford, for you never know when you might just need it. Let me just say that my experience at KK despite being in an “A” class ward wasn’t as pleasant as I would have hoped for and hearing from friends about the wonderful experiences of Mount Alvernia made it worst. 

video
(He was basically without much strength and could only moan to indicate his discomfort) 

The symptoms that presented itself in Louie were quite clear. He had red eyes, rashes all over his body, swollen lymph nodes, red lips and a persistent fever which all pointed to Kawasaki disease. BUT, these symptoms could also be due to other causes. We were told that if immunoglobulin treatment was administered within 10 days from the onset of the disease, it would greatly reduce the risk of him developing coronary aneurysm from the disease. We would have wanted the treatment for it to start immediately, but the doctor would need to clear him of any possible bacterial infection through urine and blood testing and the only medication he got for days was only Paracetamol for fever management. 

This was probably taken in the wee hours and this is how I had to hold his hand so that he feels secure. Ended up staying in the crib together with him.
I hate and fear needles, especially having to fix a tap on the hand for any drips to be administered. But having to watch my own flesh and blood go through the ordeal was heart-breaking to say the least. The drip was to keep Louie hydrated prior to any treatment, but that restricted my carrying of him and it also meant that throughout the entire night, he didn’t sleep well at all. He would sleep at most 30 minutes at one stretch and would wake up groaning. I then had to hold on to his hands so that he would feel secure before he would drift back to sleep. However it would only be short-lived, for the nurse would be back into the room for the hourly temperature taking. That meant Louie will be awakened again and I had to repeat the same process all over again, multiple times throughout. 

Poor Louie had to endure having IV on both hands because his right hand was swollen from the drip and they had to insert it through his left.
This was the "miracle" intravenous immunoglobulin (IVIG) that got him feeling better almost immediately.
Louie was only given the intravenous immunoglobulin (IVIG) treatment 2 days after admissions after the battery of tests came back negative. His fever subsided almost instantaneously following it and he was discharged two days after. We were all keeping our fingers crossed, that he heart valves will not be affected by the disease. Despite us catching the disease early and having the treatment started before 10 days from the onset of the fever, Louie still managed to be in the “lucky” 25% minority. He was put on aspirin after discharge as a precaution to prevent blood clots, and his checkup one month later revealed that his coronary arteries were indeed affected. His arteries were significantly larger than average. An echocardiogram 3 months later showed slight improvement in his situation while his last review another 3 months after that, finally showed that they were back to normal. Unfortunately this is not the end of the story, for Louie will need to go for regular checkups in future to rule out any possible coronary problems developing later. 

This was his first scan one month after discharge. Unfortunately he had to go back for another 2 more times before he was given the all clear.
This post was actually drafted many months back, but I never finished it, partly because I do not want to relive the bad experience again. I always try to forget about unhappy things if possible. But then I thought that it might be beneficial to share our experience and what we know with the other parents out there who may find it useful. We would also like to take the opportunity to thank friends and family who took precious time off to visit the little one, deliver gifts of essential oils and balloons, and also made those phone calls to me, offering kind advice and support. Although Kawasaki disease is quite unheard of, it is not exactly rare in Singapore even though it still mainly affects Japanese and Korean children. There is even a support group on Facebook for Singaporean parents here.  

Had to carry him like this at times because that was the only way to make him comfortable and yet the drip was often in the way.
Had the help of his siblings also, to place an assuring hand on Louie as he napped. A baby needing to be hospitalized affects the entire family and is really unpleasant.
Kawasaki Disease / Syndrome

Causes: No known causes. Although it was thought to be environmental as well as genetics and even though we had been to Japan just 2 months before the onset, it might just be coincidental.
Symptoms: Prolonged Fever >5 days, Rashes, Red Eyes, Strawberry Tongue (red tongue with white tips), Red Lips, Skins on hands and legs peeling and swollen lymph nodes at the sides of the neck.
Diagnosis: There are no tests on the disease. Only diagnosed through exclusion of other bacterial / viral infections.
Treatment: Intravenous immunoglobulin (IVIG).
Prognosis: For Louie’s case, where the aneurysm was not big to start with and had already returned to normal, his prognosis would be rather good. Having said that, he will still need to get checked once a year just to be on the safe side.

We are definitely not alone, for after publishing this post, I got lots of encouraging messages from many other parents who had gone through the same. Read about the story of how Dana, daughter of our friends from Life's Tiny Miracles here.

6 comments :

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    1. Indeed it was. We were lucky we woke up fast!

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  2. Replies
    1. Thank you for your appreciation. It is not as rare as we thought initially, for many had messaged me privately or posted that they have kids or know of friend's kids who got it. Hope that more parents become aware of the symptoms and would know what to do / expect.

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  3. Hi, I'm father of 3 small kids and I can fully feel for your ordeal... hope all is well for Louis. ..

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    1. Hi there mrhakka, thank you for your note. Yes, indeed it was painful. Especially when they had to insert the tap onto his tiny hand. :( But glad that is over now and he is much better!

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