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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


 

Mikaere 1 week before diagnosis of Kawasaki Disease

Written by Michael Kirkpatrick (2011)


On Wednesday the 18th of May 2011 I received a phone call from Mikaere’s day care centre to pick him up due to a fever. When I picked Mikaere up from his day care centre we went to the doctor’s and he was diagnosed with tonsillitis and was prescribed antibiotics.

On Thursday Mikaere still had a fever but now had developed a slight rash on his back and stomach so we went back to the doctor’s and was prescribed a steroid.

On Friday The 20th I had a phone call from my mother who was looking after Mikaere saying that the rash had engulfed his whole body and his eyes were red and his cheeks were red. When I arrived home from work I took him straight to the emergency department at the Logan hospital. We were seen by a doctor immediately and were told that this was most probably Measles which seemed odd to me as Mikaere was up to date with his immunisations. Mikaere underwent a blood test and a swab test to confirm it was Measles. We were discharged pending the results. Around about 2 hours later the Department of Public Health phoned me and said it was not Measles. After hearing this I was relieved that it wasn’t Measles but was worried about what else it could be so we went back to the emergency department. When we were admitted for the second time that day a Peadiatric Doctor came to see us this time. After this consult he was diagnosed with Human Parvo Virus which has all the classic symptoms that Mikaere had. We were discharged as there is nothing much you can do, except ride the disease out with rest and panadol and nurofen for the pain and fevers.

On Saturday, Sunday and Monday Mikaere was still in the same condition as on Friday which was a concern but I was reassured by the doctors that it may take 5 or 6 days for the Parvo Virus to start going away. So we kept on with the Panadol and Nurofen and rest. At least Mikaere was still eating.

On Monday Mikaere was complaining about sore hands and feet and I thought what else can go wrong. I rang the doctors to give them an update and was told that this also can be a complication of the Parvo Virus. Later that night Mikaere started to go off his food and drink. On Tuesday my mother phoned me at work and told me to come home as Mikaere could not move at all and he had now developed some swelling around his hands and feet and his lips and tongue had gone bright red. When I got home I rushed him back to the emergency department. When we were admitted this time, and after the doctors had gone through Mikaere's history ,the hospital called in a team of senior Pediatric Doctors from the Mater hospital in Brisbane. When the doctors arrived later that day after about 5 minutes of looking over Mikaere they said it could be and most probably is Kawasaki Disease and recommended the treatment for it. Around about midnight that night Mikaere began the treatment. After a full night of constant monitoring and check ups the treatment had started working. Mikaere was a lot better and the rash had started going away.

On Tuesday afternoon Mikaere had started drinking small amounts again and was sitting up by himself which was a delight to me. Also the rash had almost completely gone away.

On Wednesday (State of Origin night) I had noticed Mikaere’s feet and toes had started peeling which is a condition of KD. That day Mikaere also started to stand by himself and started eating small amounts as well.

On Thursday Mikaere was 100% better than when we arrived. He was walking small distances and playing with the games the hospital had in the pediatrics department. Mikaere had become quite a celebrity of the hospital as Kawasaki was so rare in our part of Queensland and most of the doctors had never seen it before. We also had the director for University medical students ask if it was ok if some medical students could come and see Mikaere and interview me so they could experience and get information on this rare disease.

On Friday Mikaere was discharged from the hospital with much delight from everyone.

On Thursday the 16th of June Mikaere had his check up with the Pediatric Cardiologist at the Mater Hospital in Brisbane and to our relief there was no detectable heart or arterial damage. Mikaere now has a second Cardiologist's follow up in 2 months time. Mikaere also has to have regular GP and outpatients appointments just to check up on his health.

One of the ongoing complications that Mikaere suffers from KD is that he still has sore hand and feet joints (mainly in the hands)and that the Cardiologist recommends that he has a strict low fat diet for the rest of his life. This is due to the fact that KD causes microscopic damage to the blood vessels which can cause them to age and calcify early in life if a healthy lifestyle is not followed.

P.S Thanks to my beautiful partner for her support and staying by our sides.

Mikaere 1 month after Treatment