The Kawasaki Disease Forum

http://www.thefreelibrary.com/Poor+prog ... 0156292208


According to the medical history, repeated echocardiography revealed no coronary artery aneurysm. Autopsy revealed calcified coronary aneurysm (10 mm x 15 mm) in the left main trunk of the coronary artery and two complex aneurysms (one 15 mm x 17 mm and the other 12 mm x 15 mm) in the proximal right coronary artery. The right coronary artery was occluded at the proximal portion of the second aneurysm.

I had Kawasaki's syndrom as a child (7 years old, which is late), which wasn't diagnosed early and was treated only with aspirin, as no one seemed to know what to do. I am now worried as I have been experiencing chest pains and swollen lymph nodes, which seem to swell and then go down again, and have been feeling sick for a couple of weeks. I'm 20 years old, and yet there is almost zero information out there about the long term implications of K.D. I have never been offered any follow up scans following being discharged from hospital.

Neither has my daughter or son. No doctor has looked at their heart. Nor can I get them too. It is like living in a third world country.

My daughter now 29 years old - recently passed out at work. They are going to do an EEG for her brain sometime in August - no hurry!!!
No mention of an EKG. In spite of me writing a letter to her doctor pleading that this should be looked at.

My son, now 24 years old - once again; Had a heart mumur after his Kawasaki's and seizures. I have mentioned it time and time again. Sure the seizrues and epilepsy is a big deal, but a peek at the heart would not be a bad thing either.

It is like living in a third world country, except we are paying lots of money for little service.

Almost all kids have a temporary heart murmur post KD and it resolves.
As far as the arteries go, I would say get a cardiologist onboard as far as those chest pains and letting them know you had KD. There are numerous reports of calcified arteries post KD in kids that never had a bad echo-or stenosis. An EKG will not tell you anything---even our daughters EKGs are fairly normal and she has giant aneurysms. Swollen lymph nodes are not something that show up long term post KD, but I would definitely worry about any chest pains or shortness of breath.

I believe a cardiac CT can be very helpful however it has risks of radiation exposure. This article compares both tests.

http://www.ncbi.nlm.nih.gov/pubmed/1966 ... d_RVDocSum

MRI can be used too without the radiation but maybe not be as clear as CT.
http://www.medicalnewstoday.com/articles/164142.php

Even this article said it might not show up, didn't it - even with a CT scan.

And how do we talk to physcians to get them to understand this should be taken seriously.

You can tell a practioner they had kawasaki's as a child, that does not get too much of an eyebrow raised.

You can tell them you fear undetected heart problems, I get ignored. I even wrote a letter to the attending physcian.

I think I will write another one, this morning. After all I have two young adults here in this house hold.

But even then an attending physcian has to justify a CT scan to health insurance.

My daugther received a CT scan of her head recently, after passing out/ seizure at work it was 1,387 dollars.

What language or facts have patients been able to use to get a docotor to pay attention?

Does only chest pains get their attention, so you have to wait untill it is really good and broke?
I know complaining of acid reflux, or pain in the back at the shoulder blades does not seem to peak thier interest.

Going to another doctor is not the answer, either. I am darn tired of going from one to another to another. I really truly believe our health care system is badly broken.

April told me, in her nurse practioner's practice which is typical of all of them has become like going to McDonalds to get a fast meal. They must get the patients in and out quick. So, my daughter talked her physcian into setting up an extra time appointment. That was this past Thrusday. Let me tell you how that came out - she was out in her usual lotted 15 minutes. I asked my daughter what gives. All she did was shrug her shoulders, and said maybe the doctor was so use to rushing that she forgot how to slow down.
I am out of answers here. It took 17 years to get my son dignosed with epilespy and get on some much needed medicine. I mean he was having a few grand mals, but myclonic jerks all the time. That was obvious, and still it was ignored. So, what chance is there to find or even care if they find something invisible inside your chest!!! There are some people on this site that are darn lucky to be alive. There are some on this site that weep for their love ones too.