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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


Sloane Family

 

Written by Janet

My name is Janet, my husband's name is Darren and we have 2 children. Belinda is 13 years old & Jack is 5 years old.

In February 2008, Jack came down with the chicken pox and two weeks later Belinda got them. A week after that, Jack had a stomach virus and he just didn't seem to get any better. Over the weekend of 15 & 16 March 2008, Jack was lethargic, he wasn't eating much, he had diarrhea and we didn't think too much of it. We let him sleep during the day and gave him plenty of fluids.

On Monday, Jack had a high temperature of 40.9 and was still the same. We decided to take him to Westmead Children's Hospital for a checkup. The doctor said it was a gastro bug and to keep up his fluids. After 4hrs of observation, we went home.

On Tuesday, Jack had a little breakfast and around 10.00am he wanted to sleep. I thought this was good for him as it might make him feel better. When Jack woke up he had something else to eat then laid on the lounge to watch a movie, but fell asleep again. He's temperature was still around 40.

On Wednesday, Jack still had a high temperature and was no better. He had a rash on his neck and was sleeping a lot and I just felt that there was something more wrong with him. In the afternoon, my husband came home from work and then Jack woke up. I gave him some Nurofen and we decided to take him to Westmead Children's Hospital again. The doctor's checked him out and while he was being observed again, Jack was bouncing off the walls, however the doctor did say he must be on the mend and just to keep up his fluids up and see how he goes. So we went home to bed and throughout the night Jack was up crying and vomiting and each time I settled him down and he went back to sleep.

When Jack woke the next morning with a high temperature again, I noticed the rash had spread and was now on his torso as well. I took one look at him and I knew in my heart and from the look in his eyes that something was not right. I said to myself I'm taking you back to the hospital. Jack's white of his eyes were blood red and the rash was now from head to toe. When we went to the hospital I said to myself I am not leaving the hospital until I had an answer as to what was wrong with our son. My husband had said to me not to leave the hospital until Jack had a blood test and further tests were done.

When I arrived at the hospital, it just so happened the same nurse that was on the night before was still there. She said to me you were here last night and all of a sudden we had jumped the queue and were taken in straight away. They had taken Jack's blood and had him prepared for an IV drip just in case. We had seen this young Asian doctor and her words were it could be Kawasaki Disease, but lets hope it not KD as we don't know enough about it.

While we were waiting for Jacks blood test results, I rang my husband at home I said to look up Kawasaki Disease on the Internet as the doctor thinks it might be that. Then I got the news from the doctor who said yes it is Kawasaki Disease. They admitted Jack and we had our own little room. What I didn't know was that it was an isolation room.

On Friday, the doctor ordered IVIG. In the meantime, they said to us that they needed to wait until day five of the high temperature to be certain it was KD . Once the doctors confirmed it was, they administered IVIG to Jack throughout the night. That evening, I was given a fact sheet on KD from the nurse. I had read it and didn't understand the severity of this disease until my husband & daughter came to the hospital that evening. I read some heart wrenching stories and could not believe this could happen to our son . We had never heard of this disease, we so confused thinking where did he get it from? Who did he get it off? What causes this disease? and our heads were spinning. (The cause for this disease they think is related to house hold cleaning and carpet cleaning products). The doctors believe Jack got KD from all the viruses he had, his body trying to fight the chicken pox virus then the stomach virus all reacted and caused KD.

My husband and daughter came to the hospital with a newspaper and there was an article about a family who had just lost one of their twins (Gemma) to this disease. I cried and my heart went out to this family, as to us this was reality. This could happen to us and I was shattered.

On Sunday, Jack's temperature started to rise again, his eyes became red and the rash reappeared. The doctor's examined him and decided to give him another dose of IVIG. We asked the doctor's does this normally happen with KD?, they said, no, this is not common. Jack spent 6 nights in hospital (over the Easter long weekend) and they were monitoring his vitals & doing blood test. We left the hospital and went home thinking everything was OK. On Tuesday 7 April, we had a cardiology test and the results showed a small aneurysm measuring 3mm. As a result of this, Jack had to take aspirin daily until further notice. Two weeks later a rash had re-appeared on Jack and his eyes were slightly red and he was irritable & tired. We thought no, this can't be happening again? We did not take any chances this time, so we took him back to the hospital and they did more blood tests. His platelet levels had risen for some reason. The hospital admitted Jack again and administered the IVIG again. The doctors appeared surprised and said that this second episode of KD has now put Jack in a low percentage of children with this disease. Jack spent 3 nights in hospital this time.

On Monday 8 December 2008, Jack had his heart checked and the aneurysm is still there and measures 2.5mm His little artery is damaged and he will be on aspirin for at least the next 12 months.

We took kids away in January '09 for a holiday and that's when we heard about John Travolta's son Jett. Just last week as I was writing this, my friend's mum said that her bosses daughter was admitted to hospital with KD. Our hearts went out to these families as well. We would like to help the Kawasaki Disease Foundation and help raise as much awareness as we can about the disease.

This is our story.

Thank You
Darren, Janet, Belinda & Jack Sloane