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CoRDS Registry

Kawasaki Disease Foundation Australia has partnered with Sanford Coordination of Rare Diseases (CoRDS) Registry.

This is an international and Central registry of individuals of any age who have been diagnosed with a rare disease. It was primarily developed to meet an unmet need for patient registries worldwide.

If you or a family member has been diagnosed with KD, you can help researchers see the whole picture.

To enrol in the CoRDS registry, or for more information, visit www.sanfordresearch.org/cords


 

Written by Kate McLaren (2011)


It was February 2007. I had a 3 month old baby Carter at home and 4½ year old Hayden.  Hayden had bad temperatures for 24 hours - peaking at 40C and panadol and nurofen back to back were only just reducing his temp by a degree and a bit.  He also had symptoms which the chemist had advised were worms –so I bought worming chocolate – for the whole family!!!  He was lying on the lounge but then he would really act out - bordering on demonic!!  By the next day I knew there was something not right.

It was a Tuesday (amazing how clear the details are still) I took him to our family GP of 10 years and stated the temperature - I was advised it was probably something viral and to keep up nurofen and panadol.  36 hours later still the same temps but we had these other little symptoms - bright red tongue, small patches of rashes on legs etc (yes I even rolled the glass over it to check for Meningococcal as per my fridge magnet.  His eyes were terribly bloodshot like he had been on the drink for 2 days.  He complained it felt like his tummy was pushing out.  (We later found out this was his gall bladder .

On the Thursday - I went back to my same GP and demanded a blood test which we had and the GP called me on the Friday to advise his white blood cell count was low to non- existent.  My first thought was leukemia.  He advised to get to a paediatrician immediately.  This GP went on to mis-diagnose 3 things for my son – which means trust YOUR PARENTAL INSTINCTS!!

After calling the paediatrician and being advised there was a 6 week wait I told the secretary that if we don’t get in immediately I would go to the hospital and demand to see him.  We saw our paediatricians’ colleague who spent an hour going from his scalp to his feet checking him out … after ½ an hour he called our paediatrician in.  I explained the peeling on my sons’ hands was probably from “gloop” he had played with at pre-school.  Almost simultaneously they looked at each other and stated Kawasaki’s Syndrome.  Of course a million emotions and thoughts went racing through my mind and heart.

They ascertained at this late stage he was not able to have gamma globin.  He was put on aspirin for 6 weeks.  After no exertion and a couple of visits to the paediatric cardiologist we were very fortunate that he has had no obvious effects.  He was recently diagnosed with ADHD and we are almost at the end of a long line of testing for Autism – I have tried to find out if there is a link as he was a relatively normal child prior to KD.  No-one can tell us if these are related to having had Kawasaki Syndrome but we feel very blessed he is with us – as we found out very quickly some families weren’t as fortunate as ours.  One thing Hayden having this has taught us is to be firm and follow through on anything as YOU are the only people who will ADVOCATE for your kids.