Tuesday, May 2, 2017

How Kawasaki disease changed my perception of fever in children

Hello there! Since I'm trying to transit to become a parent blogger, I shall start off with my first official post and it shall be about this deadly disease in young children called "Kawasaki"
Please mind that this is a really long post but I hope you take your time to read and learn about the seriousness of Kawasaki.

What's Kawasaki disease all about?

Kawasaki Disease is a disease that causes inflammation of the blood vessels throughout the body. It predominantly affects children under the age of five. Its cause remains unknown and the disease is the leading cause of acquired heart disease in children in the developed world. KD is diagnosed based on symptoms, which include:
• a persistent fever that lasts for five days or more
• bloodshot eyes
• red lips and / or a red swollen tongue
• rashes on the skin and / or redness of the palms and soles
• swollen lymph nodes

The most scary thing is that there is no test to diagnose KD. The only possible way to tell is through observation on the various symptom.

How it all started with my little boy?

I remember that year was 2015 just close to 1 month after Nathan's 2nd birthday (Nathan is the name of my boy), he started off with fever on and off and it continues for 2 weeks. At that time I did brought him to a few doctors thinking it's just another viral fever since he goes to childcare and it's consider rather common for young children to gets sick often. But I got my lesson learned really quick through this period.

After the 2nd week, my family started to noticed some thing isn't right with Nathan as he began to not wanting to eat and he started to have a small swell lymph behind his ear on the right side. (unfortunately I didn't save the photo as I didn't thought that I will write this article) We immediately send him to KKH A&E department. After a long wait of about 2hrs, it's finally our turn. Doctor advised to admit him due to the prolonged fever and also the feared of dehydration as he isn't eating. It was near to midnight, the actual resident doctor only came to checked on my son the next morning at about 8am. Usually for midnight cases they will send standby/trainee doctor to see the case and then report it to the head doctor the next day.

Next morning came and the "Prof" came to visit and checked on Nathan's fever. My mum didn't stay around the night before but she has a lot of concerned and wants me to check with the doc but I again was not that "anxious" as compared to my mum. But I followed her instruction and asked the doctor. The doctor actually told us that is nothing serious as it's just another case of swollen gland/lymph node which she has seen in all the young children based on her past experience. Her answer actually assured me and my parents a little. Nathan have to continue to stay in the hospital as he refused to eat or drink and have to be on IVF drip. After the 2nd day we realized that he isn't recovering and that his swollen lymph seems to be getting even bigger and redder. Hence, this time I got worried, the "Prof" came to visit on him as the usual routine again and my mum was around. We checked with her if we can send him on an X-ray but she refused to do so and again repeated her term-logy of "It's just another case of swollen gland/lymph node which I've seen a lot of times" and suggested to prescribe another kind of medication instead. The next day as it was a weekend, there's another doctor that came for the routine checks instead of the "Prof". Seeing that it is a different doctor, we decided to take the chance and asked for different opinion. The doctor actually thinks that Nathan's condition is quite serious and he suggested that he should do an X-ray like we asked. But unfortunately the slot for X-ray are full and have to be scheduled to the earliest available which is next day instead. 
This is his first admission

The 4th day came and it's the day that the actual doctor that is looking after Nathan came back to work and the morning checks, the other following doctor told her that the doctor which seen Nathan yesterday needed an X-ray and she was so furious and say why and said don't have to and so it's cancelled once again. So Nathan is drinking a little as we tried to feed him. But mind this, his fever isn't getting better! By the 6th day, doctor said that we can be discharged. Alright so I thought. We discharged and went home. The next few days it was really a terrible one. Nathan began to show sign of red eye and his feet and finger was all swollen and he started to limb when walking. We was all so panicked. This time my mum ask my uncle to bring him to his regular PD for his daughter at Mouth Elizabeth as we doesn't want to go KKH and wait for a few hrs again.

I didn't tag along as I have got work and the job that I was in, my boss was not very happy that I keep taking leave. So my mum and uncle helped me instead. Once they are at the clinic, the PD just see Nathan and immediately ask him to be admitted to KKH again as he is suspected of having Kawasaki Disease. When my mum told me about that I went to googled about it and I almost cried out because of all the negative effects which will cause one to have if they caught that disease. I immediately went to hospital after my work and still waiting for admission. The doctors at A&E admitted us after seeing the letter and Nathan's condition. This time it's also late night too but due to the seriousness of KD, alot of team doctor came and see Nathan and they took alot of blood from him for blood test.

Look at his swollen hand 😢
The next morning result came back but as mentioned earlier, there is no test to determine the disease, the doctor has to make arrangement for him to go to the cardiologist to have a test and some other test which I totally forgotten what it's called. There was too many things going on at that time and I being a single mom, I have to juggle with my work and Nathan that I actually used up all my leaves and have to take unpaid leave. That month my salary got deducted quite abit :( But nothing matters as long as my little boy is safe right? 

After all the test was done, the doctor told us is seems to be KD. I was really furious as well as my mum. Because he was admitted right before he got diagnosed of it and the so called "Prof" of KKH didn't even suspect or educate us about KD and just send us home based on her guesses!!! We didn't even complain about her to KKH as I totally don't have the mood to bother about that seeing my son suffering. Also I do not want to name the doctor as this post isn't about shaming her but to bring awareness about the seriousness of fever that can be linked to KD in young children.  

After the diagnostic, doctor suggested using IVIG as treatment. After the IVIG treatment, I'm told that fever supposed to come down but his fever still comes on and off and that worries the doctor and was told that he needs another different kind of treatment which is steroid. I felt the heartache seeing him get poked by all the needles. The doctor even ran out of veins to jab him and have to find vein at his leg area. His skin was also starting to peel in between his finger nails and foot. I really cried seeing him in pain. He was discharged the 5th day. Echo scans will be scheduled post discharge from hospital between 2 weeks to a month to check on the heart. Depending on the result, the frequency of subsequent scans will be advised by the cardiologist. He also have to take Steroid and Aspirin for continuous of 6 months. Luckily Nathan is one of the lucky few that echo scan was normal and no sign of changes for coronary arteries.
Nevertheless, I'm sure to bring him back for an annual Echo as I read many sudden heart attacked in teenage times when the kids grow up and I'm really worry especially now whenever Nathan played a bit too much or excited he will pant and his heart beat extremely fast.
He is just practically exhausted from all the poking :(

In any case now you have some ideas of what Kawasaki is all about, I urged that all parents to not take fever lightly. Also a big thank you to my family for being around me during the most difficult time. If you need support for Kawasaki, I have found and joined a really helpful group in Singapore. Do let me know if you need help or any question. Leave me a comment. 

Here's the link: https://www.facebook.com/KawasakiDiseaseSupportGroupSingapore/

Thanks and let's fight the deadly disease together!