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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

McDonald Family

Written by Jaime McDonald (Mother) (2010)

About a week or so, before he started getting high temperatures, he had been slightly irritable and just generally sooky. I just put it down to teething, as a few teeth looked like they wanted to break through. He had also been a little funny with his bottles, crying sometimes, which again, I thought was from the teething.

On Thursday October 21, he was in Child Care while I studied. When I picked him up, they told me that he had runny stools and when he had his bottle, he screamed as if it was hurting him. I told them that I'd been giving him Panadol, as he's teething and that usually changes his stools a little. They had apparently taken his temperature and it was normal. They didn't inform me that he was very irritable ALL day and they had to rock him to sleep, which I never have to do. He is always an easy baby when it comes to sleep etc. They should have called me and I would have come picked him up right away.

Early hours of Friday morning, October 22, he woke up irritable with a high fever. On average, it was around 38 - 39. I booked him in to see a Doctor first thing as soon as we woke up. I had a feeling it might be Pharyngitis, as he had that 2 months prior and that would explain the crying when giving him bottles and food etc. So we went to the Doctor (he wasn't my regular doctor) and he diagnosed him with Pharyngitis. He told me to go home, keep giving him Panadol and Nurofen, alternating every 3 hours and prescribed Amoxicillin for him.

Saturday October 23, my birthday. His temperature was still very up and down, it would come down for an hour or 2 and go right back up fast! Late in the afternoon, he didn't seem too bad, so we went out for dinner with my friends, for my birthday. While we were dining, Tyrese went downhill fast! It was like he was delirious! He was sitting in his stroller babbling, but looked asleep, it was very odd. I took him straight to the ED at my local hospital. They did blood and urine tests. The urine was fine and the bloods didn't really show much. The Doctor I saw there pretty much told me that they couldn't tell if it was viral or bacterial. After they got his temperature down, they sent us home.

Sunday October 24th, no change, his temperature was still high most of the time and by this stage I had gone through 2 bottles of Panadol and Nurofen since late Thursday night.

Monday October 25th, I got him an appointment with my regular Doctor. Same thing again, he just has a bad case of Pharyngitis, go home and continue what you're doing and his temperature should go down in a day or two. Ok so by this stage, he has had this constant temperature for 4 - 5 days. I was scared. I did as I was told and we went home. He had been sleeping a lot since Friday and when he woke from his nap on Monday afternoon I noticed a few spots on his body. I lifted his t-shirt and they were across his tummy and chest. They looked a little like Chicken Pox, they were small bumps with what looked like a tiny clear blister on them.

I had to go to school to pick up my 9 year old and I went to speak to a friend who works at his Child Care, to see what she thought of the spots. She told me to take him right back to the hospital, which I did.

When we got to the hospital and the Nurse took his Obs the rash had really come out like welts all over his back! Again the Doctor did blood and urine tests. The bloods showed that the infection had gotten worse over the 4 days, when really, the Amoxicillin should have started working by now. She put him on an IV for fluids and started giving him Penicillin through IV. They were thinking that the rash may be an allergic reaction to the Amoxicillin, as I'm allergic to it myself and was hospitalised as a kid for it. They admitted him finally.

Tuesday October 26th, the Paediatrician came to see him. He checked him over and I distinctly remember him checking inside his nappy/diaper, to see if the rash was in there. Apparently that is a common symptom of KD. I think the Paediatrician must have suspected KD immediately, but had to wait for other symptoms to appear before he could diagnose him. His temperature remained high all day and all night. I had one Nurse that refused him pain relief! I was so mad, he was clearly in distress.

Wednesday October 27th, he was having another round of blood tests and was very upset and crying. I noticed that the whites of his eyes were very pink, but I just assumed it was because he had been screaming. A little later, he was lying on the bed and I noticed that his mouth and lips looked swollen and his lips were actually bleeding, on the moist part that sits just above where the lip touches gum/teeth. They were looking quite purple too. They had been cracked and dry for a couple of days, but I assumed that was because he was dehydrated. Clearly it wasn't.

Wednesday night, the Paediatrician came to my room and checked him over again. He told me he had Kawasaki Disease (KD), I was in tears. Another symptom that he had was the swollen hands and very pink feet. I had never even heard of this disease and when he told me that it can affect the heart and arteries, long term, I broke down. I am a single parent and luckily I had my best friend there for support. They told me how they were going to treat it, with gamma globulin through his IV and that the treatment would take around 10 hours. They had to get Government permission for the blood and have it couriered from Melbourne to my hospital. It arrived just before midnight and they started the treatment in the early hours of Thursday morning. I have been told that gamma globulin is liquid gold!

Thursday morning, October 28th, I started to see slight improvement in Tyrese and his temperature had come right down to 36 - 37! He responded well to the blood treatment and the Aspirin.

Friday October 29th, his Doctor and Paediatrician came to see how he was doing. He had improved immensely and his temperature was still perfect. He was still responding well to the treatment. He had another round of bloods. Everything was still high, but had come down a lot since the bloods that were taken on Wednesday. They discharged Tyrese Friday night, giving him a script for Aspirin. He has to have 1ml of Aspirin daily, for the next 3 months. He is also having an Echocardiogram on November 5th and another 6 weeks later. Then I will have a follow up visit with his Paediatrician, Dr Peter Forrest.

Feb. 2010

Paediatricion appointment - everything looks good. No damage at all to his arteries