Our story with Kawasaki Disease.

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Kawasaki’s disease.
Ever heard of it before? Nope, me either – it’s uncommon, but it’s serious and I feel more parents should know about it…
Please read THIS FACT SHEET to learn more (seriously, click that and read it, learn the symptoms)
This is a disease that should be on every parent’s radar. It is noncontagious but it’s very serious and needs treatment in under 10 days to help reduce the risk of long term damage to the heart.
Let me tell you our story with Kawasaki’s….

Saturday the 20th of October – LuLu’s party day, we woke up and our little man was just a bit “off” – nothing major, just grumbly and a bit clingy. He enjoyed the party and spending time with his Nan, but he didn’t eat as much as normal and we all agreed it was probably due to a big molar he was cutting. That afternoon he started getting lethargic and that night was dreadful. He was awake screaming & he had a fever in the high 38c’s.
Sunday morning when we woke up he had a rash on his tummy, by the time we had finished breakfast and we changed his nappy again it had spread to his back. So off to the hospital emergency department we went.
The doctor thought it could be just a viral thing – possibly hand, foot and mouth, I didn’t feel it was that – but being a viral thing made sense – kids get those.
By 4pm that same day the rash had intensified, so back to the hospital we all went. This time a new doctor said it was a random allergic reaction, Tommy was given an antihistamine and then steroids.

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This was his rash just before 4pm on Sunday evening.

We went home after a few hours and when we woke up Monday morning around 6am the rash had faded and he seemed to be on the mend.
A few hours later before 9am, the doctor from the hospital called and wanted us to return, she believed it maybe scarlet fever. By the time we arrived at the hospital, Tommy had gone back down hill and the rash had returned. (The steroids and antihistamine had masked the rash temporarily) We were given a script for penicillin and went home. At midday he started vomiting, I contacted the hospital they said it could just be the combination of scarlet fever, high temperatures and medicine making him a little unwell. He threw up a few more times and then again after we woke on Tuesday morning and now he had diarrhoea. We took him back to the hospital.
This time he had a blood test straight away and a cannula was inserted to start fluids.

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His “bear paw” – his first cannula.

They ran many tests; blood cultures, x-ray and from memory I think they started a broad spectrum antibiotic. And they started organising transfer to Toowoomba either by ambulance or care flight – which ever could come first. Ambulance it was.
Dalby Hospital did everything they could for our little man and their level of care was great. I can’t fault them for the multiple diagnosis, from what I have read this is very common in the early stages of Kawasaki’s because the rash and symptoms continually change and the symptoms could be many different illness, it’s all a process of elimination. The doctors and nurses really cared for him and we are so thankful.
Before 2pm on Tuesday we were loaded into an ambulance with a lovely nurse, I’ve never been in an ambulance before so that was an experience and I sat beside him holding his hand for our very quick trip. Trent and Lucy followed behind.

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I sat in the seat beside him on the right and he slept most of the trip. Thankfully we got there very quickly.

We arrived at the base hospital in Toowoomba, we were told paediatricians were on stand by waiting for us – we weren’t seen at all by one, so there may have been so miscommunication. Tommy threw up all over me again while we waited. We ended up asking for a transfer over to the private hospital and drove ourselves there. We couldn’t watch him become more unwell and no one could tell us when he would be seen properly. The base hospital was very busy.
We arrived at the private hospital at 7pm and were given a bed and a private room immediately. That night our little man suffered through more blood tests and they had to put in another cannula. He was started on more fluids and antibiotics. At this point they were worried about sepsis, a few viruses and possibly meningitis. Those possibilities were terrifying. We were exhausted at this point it was a hugely long day, I believe Trent left us at around 10pm that night to go back to Dalby.
The next few days were a blur with lots of tears, I sat in a hospital bed scared out of my mind holding our little man who just slept. He didn’t want to do anything and he was so upset. I felt like a zombie and my heart was shattered. Days earlier he was his normal cheeky self. I was wracking my brain trying to think how he got sick and I didn’t stop praying for him to get better. Trent drove in each day to be with us.
Wednesday was a rough day of more tests and this was the day he started to swell up. His little body went puffy, his hands and feet were like little balloons and his eyelids were so swollen. He is normally such a petite little guy, in hospital he gained 1kg due to the swelling. And his eyes were so red and blood shot, they looked painful.
Thursday I remember he sat up and finally ate something, he ate a jatz biscuit and a lemonade ice block for breakfast and then some weetbix. That was a huge moment, he hadn’t eaten for most of the week except a small amount of yogurt on Tuesday – which I ended up wearing anyway. He also had to have another new cannula put in that day, his 3rd one.

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During all these days we were waiting on blood test results, monitoring him constantly, weighing nappies, measuring water and our paediatrician was conferencing with the Lady Cilento paediatric team and infectious disease management team. His rash continued to spread down his arms and legs and he remained so puffy.
Thursday evening the paediatrician asked me if I had ever heard of Kawasaki’s disease… I hadn’t. She and the doctors she had been speaking to believed this is what he had, unfortunately there is no test for this disease – just ruling out other possible problems and that’s what we had been doing. Eliminating other viruses and illnesses. Every test was coming back fine, well not fine. His inflammation levels were through the roof, the highest she said she had seen in such a young child, his kidneys and liver weren’t doing great and multiple other worrying results – but for specific viruses nothing was coming back. Throat swabs, nasal swabs, stool, urine, bloods – it showed no illness – but there was clearly something going on.
We were waiting on one more test result to come back before we treated for Kawasaki’s… The only symptom that wasn’t exactly right for Kawasaki’s was his temperature wasn’t getting over 39c, but it was in the mid-high 38c – but the doctors believe the steroids he had been given on Sunday evening were effecting his fever. Because even with regular panadol & nurofen his temperature would continue to be higher than normal and he felt so hot.
The test result still wasn’t back by Friday afternoon – so we agreed it was best for Tommy to start the treatment anyway. The treatment is intravenous immunoglobulin – so it was not dangerous at all for him to have. Trent and I sat with him while the treatment happened and we prayed so much that it would work.

 

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Receiving the IVIG treatment.

Trent stayed in hospital with him that night and I went home to snuggle LuLu.
Saturday he did seem to pick up, he was more alert and playing. He was actually playing with toys! He ate more and just seemed brighter. We were so thankful that this treatment had seemed to work, if it hadn’t he would’ve had another round of it and if that failed, then he would receive a lumbar puncture – but thankfully we avoided that.
I stayed Saturday night and it was awful. We barely slept at all and I feel it was because he was more alert, suddenly he was much more aware of where he was and he was scared. So that was rough, but understandable with the constant nurse checks and flushing of his cannula. He was so sick of being poked and prodded!
On Sunday 28th/October he was weighed and was back down closer to his normal weight, we were getting our tiny little man back and after more blood tests we were discharged. It was so wonderful to get back to our big blue house and our own bed.

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The paediatric ward we stayed in, we were taken care of so well and all the staff were beautiful – but I hope we never have to return.

We saw our paediatrician the following Thursday, she said one of his blood results showed possible glandular fever as well.
The poor little guy, Kawasaki disease, possibly glandular fever, teething with molars and the paediatrician also believes he could’ve had a mild case of viral meningitis (due to his very sore head & neck).
We had another round of blood tests today (Thursday 8th/Nov) to check again for glandular fever & a bunch of other things, just to make sure everything has remained ok in his little body and we hope the glandular fever result was a wrong one and he hasn’t had that.
At the appointment we also discussed how upset and unsettled he has been since coming home. He has really good & normal moments and then he will just melt down and he is so sad, he doesn’t like being away from us and some nights he sleeps well and others he won’t settle at all… She believes his stay in hospital has traumatised him and he is suffering from a lot of stress. He still is suffering body/joint pain, peeling hands, feet & lips and appears to get very bad headaches. So all we can do is love him through this, we cuddle a lot, we carry him and stay close to him, we are gentle, we do massage and just take things easy. From the reading I have done these symptoms and the behaviour is expected and normal after Kawasaki’s.
Each day is getting better but we still have 6-8 weeks to go until we know if he has come out of this ordeal ok. In that time frame he will get an ECG done in Brisbane and that is to make sure his heart is ok. Until that test he has to have aspirin every day.
This experience was horrific. I am so thankful his issue was treatable and he responded well to the treatment, we continue to pray that his little heart will be totally fine and we have faith it will be, especially because he received treatment before day 10.

I want to encourage you, that if your child is sick and you are given one diagnosis and then they worsen/change – go back. Keep going back until the treatment works or you see improvement. You don’t have to accept one opinion. We are our children’s advocates. We have to fight for them. I knew each time in myself when he needed to go back to the hospital and I didn’t care if it turned out to be nothing, I would prefer to be known as the over cautious Mother than regret not taking him or leaving it too late. If we had just agreed it was some viral thing and tried to ride it out over a week, I hate to think of what the outcome could’ve been.
Because even in hospital with constant fluids and daily antibiotics given through his IV, regular pain relief and routine observation they were describing him as flat and not improving. I hated hearing that at each shift handover, I just wanted to hear he was improving – but I knew he wasn’t but I also knew he was in the best place and was being taken care of.
This was easily the most scary and awful week of our life. One I wish on no one and my heart breaks for families going through worse ordeals than this, gosh I can’t even imagine it. I know we are fortunate that it was this and nothing more serious.
So what caused this? It is unknown, it could’ve been anything – most likely just a basic germ and his little body sent it’s immune system into over drive causing all of his arteries throughout the body to become inflamed. Prior to the Saturday he hadn’t seemed unwell or anything, so we are puzzled. But we are praying this ordeal is now over and his ECG will come back with good results.

This blog post was created to draw awareness to Kawasaki’s disease. If you are concerned your child has Kawasaki’s please go to your nearest hospital or GP. If your child has this and you need support please feel free to email me at modernwifelife31@gmail.com and I can connect you with a great support group.
I pray you never experience this disease first hand, but if you do, know you aren’t alone.
Thank you to so many of you for your genuine kindness, concern and compassion over the past few weeks.
We would appreciate any prayers or positive thoughts towards healing and good results.

Thank you.

Once again, please click on these links and educate yourself on this disease and share this post or those pages with any other parents you know.
Kawasaki Disease fact sheet from Royal Children’s Hospital Melbourne
Kawasaki Disease foundation Australia 

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4 thoughts on “Our story with Kawasaki Disease.

  1. Bindy how scary for you and your family to go through this. Thank God that he is better, and thank you God for the amazing medical care that we are blessed with in Australia. I read the RCH link too, and I’ve never ever heard of Kawasaki before. Your mother’s intuition is on point. And good luck and best wishes for the six week echo test. 💖

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  2. Bindy, my heart sunk when I read this tonight after a friend sent this to me.. I just went through this whole ordeal myself with my 3 year old son in June this year.. we are both still recovering emotionally from it.. my son, still physically with joint pain some nights.. if I may, I’d love to help raise the awareness with you, I’ll send you a separate email. Take care super mama x

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  3. Bindy, I will continue to pray for your family! I can’t imagine the pain and fear you have experienced. I’m so sorry! You are a wonderful mama and I know this post will help so many people. Continued prayers!

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