My daughter has just been diagnosed with Kawasaki Disease. I have read as much of the information available that I can find on this disease.
My questions are as follows:
1) How often do you see children with this disease in your practise?
2) What are the treatments available to these children when they develop cardiac complications?
I can only find information about treating the acute phase of the disease. What happens next?
Aug 17, '98
I am sorry to hear about your daughter. I have seen three confirmed cases in 20 years. There have been others I have suspected but because it was a disaster assignment confirmation of diagnosis could not be done.
Case one was 12 years ago, Case two was 4 years ago (also the child of a nurse), and Case three was 18 months ago.
Only one case has an abnormal echocardiogram and the child was diagnosed with a possible widen aorta. There are no other cardiovascular abnormalities found, so monitoring is all that is continuing. The child will be treated based on development of secondary disorders, i.e. arteritis then corticosteroid, aneurysms then anticoagulants to surgery if indicated.
Monitoring a child after Kawasaki's is based on initial outcome and any future abnormalities found. The child with a possible widen aorta is monitored after immunizations and before participation in athletics and during growth spurts. BTW the abnormal echocardiogram did not occur until two and a half years after diagnosis.
Aug 17, '98
Thank you so much for your reply. The only information that I have been able to receive is that she needs to be monitored for coronary artery aneurysms. I had not been aware of the need to also monitor for aortic aneurysms.
I know with adults that you cannot reliably diagnose aortic aneurysms with a 2D echo. It must be diagnosed with a TEE or CT scan. Is this also true for children? No one has yet brought up the need for CT or TEE's with me. Should we be asking for routine CT's and/or TEE's over the next few years?
Aug 21, '98
HiI have also seen Kawasaki's before only one child showed heart involvement.The only thing I can add was that about 4 years ago the teaching hospital I was at was doing trials for low dose,long term ASA for this disease.
(Yeah I know what about Reye's syndrome) The doc's and parents felt the benefits outweighed the risks. This trial was not completed by the time I left so I can't tell you anymore. I realise this was not very helpful. I do hope your daughter is convalecing well.
Sep 4, '98
The child who had the cardiac involvement was picked up on the echo. The next test was a cardiac cath. I do not believe that a cardiac cath was done the following year. I know an echo was done but not what other testing was performed.