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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

Hemming Family

Written by Kate Hemming (Feb 2011)

For a few weeks prior to becoming ill Mack had complained on and off of a sore throat. In fact, I hadn’t had his 4 year vaccinations done because he had either had a niggling cough or complained of a sore throat every other day. The doctor said he was fine and advised me that he was fine to have his Vaccinations. I as a parent didn’t want him to have the needles until his body was 100% well. Mack has a history of febrile convulsing every time he became ill between the age of 1 until he was 2 ½ years old.

Saturday (9th October 2010) I took him to our GP. He said his throat looked fine.

Sunday night he complained of a sore neck and had a mild fever but slept well

Monday afternoon he was not able to turn his neck freely and would scream if touched. I took him to a chiropractor to learn that his glands were up. That night he had high fevers and neck and throat pain.

Tuesday, he was really unwell with high a fever and neck pain and now crippling headaches. His scalp was even red and it felt so tight to touch. It was so hard to watch a child who had never even know what a headache was to suddenly be screaming with head pain. They came on within an instant, along with the high fever. I took him to the GP who suspected meningitis and asked to see him the next day. That night the fevers, neck pain & headaches all continued but he now had severe stomach cramps– we thought he may have had a twisted bowl or appendicitis. Then he vomited once.

Wednesday, Mack also now had joint pain. He would walk a few steps then start screaming that his legs hurt and he’d collapse. We went back to the GP. By now Mack’s eyes were bloodshot. The Doctor was still thinking meningitis and wrote a script for antibiotics wanting to see what 24hrs on them might do. He told me that if any rash occurred or if his condition worsened to take him to the hospital. An hour later I phoned him back to inform him that Mack now had bright red hands. I was told not to worry and to give the antibiotics a go. By this time we were really worried, not so much for the fever (as you are always told that “they are the bodies way of healing itself”), but because his headaches were excruciatingly painful. I went back to the Chiropractor who suggested the hospital. I then phoned Mack’s old pediatrician in Brisbane and spoke with him about the suspected meningitis. He told me not to give antibiotics because they may mask any symptoms and to take him to the hospital immediately. Within the hour and by the time we got to Nambour Hospital, on top of all the other symptoms, Mack had a rash on the back of his arms which looked more like red raised pin pricks and his lips now matched his hands, being bright red.

The Pediatrician made an immediate “informal” diagnosis of Kawasaki Disease. I say “informal” because there is no test which can be done to diagnose KD. The main/ first sign is having 5 days of high fevers and as he had not yet had 5 days, they couldn’t yet rule out a couple of other possible things. He was admitted and bloods, swabs and samples of everything where taken and he was heavily observed. He had yet another night of terrible pain and fever. As the case the whole way through Mack’s illness, Panadol was very slow at reducing the fevers.

Thursday – His liver count was high and he now had a “strawberry tongue”. It looked incredible…exactly like a deep pink spotty strawberry. Both of these symptoms are typical of KD.

Friday (17 October 2010) – The decision was made that he had KD and he was given an intravenous infusion of gamma globulin (purified antibodies); an ingredient of blood that helps the body fight infection. The pediatrician told me that the hope of giving them this blood product derived from a pool of people's blood is that they hope that within that pool, some one's antibodies have the properties to fight this particular disease.

Saturday – No fevers and all the symptoms were slowly dissipating.

Sunday – Liver function and joint pain is all good and we got the nod to go home. Mack has to be on aspirin daily until we see the cardiologist.

Some of Mack’s symptoms returned on the second night we were home, and we went back to the hospital for more blood tests but all seemed to be OK. He has continued to get his strength back however he still suffers from joint pain, which I have read may last for years to come.

Mack saw a paediatric cardiologist 9 weeks later who informed us that on a macro level all appears well. He will recheck the blood vessels in 6 months then will encourage him to have checkups yearly for the rest of his year. This was the best news ever and we feel so lucky that we pushed forward and didn’t take just one doctor's view on our child’s health...after all, no-one knows your child like you do.