In the Fall of 2009, when my son was 15 months old, he was diagnosed and treated for atypical kawasaki disease. Fortunately, my husband is extremely persistent and an extremely good medical advocate and despite continual misdiagnosis insisted that he get an eco-cardiogram. That led to the discovery of inflammation in his arteries and an IVIG treatment that worked like a miracle. To our knowledge he has no cardiac damage as a result and is in good health. He's 6 now. That was a traumatic experience as all of you know and we subconsciously fear that someday the other shoe will drop. But to some extent that experience is behind us.
I find myself today browsing the KD boards again (and now posting my story) because my husband and I find us in the middle of a huge journey to get to the bottom of his unusual string of vascular medical issues and KD is coming into the conversation again. And while he has no knowledge of having had KD as a child, and no one is definitively saying that he has it now, it’s just too much of a coincidence that he has extremely rare vascular issues and our son had an extremely rare vascular issue. I can’t help but think there’s a connection. In reading others stories on this board, our stories sound so similar to the ones I read. Here’s my husband’s story.
In Dec of 2011, at the age of 36, my husband started to feel unwell, but nothing specific – his forearms were kind of achy and his shoulder was bothering him – he thought it was a pinched nerve. He was generally very healthy, walked 2 miles every day, ate healthy, low cholesterol, etc. He saw his GP who ran a bunch of blood tests to rule out a cardiac situation. Nothing turned up. He scheduled a stress test, just to be safe – with the holidays; it was a few weeks off. In the meantime, one day, he was walking our daughter a few blocks to the playground and felt an overwhelming sense of fatigue and could barely make it home. He just knew something was seriously wrong and he went to the hospital where they ran some tests (ekg, etc) and again, nothing showed up. They sent him home. The following week or so, he went for the stress test. The office, looking at the results of the other tests, assumed that they were just ruling out a cardiac. To their surprise, he failed miserably. They immediately rushed him to the hospital to get an angiogram. We’re told that worse case, maybe he’ll need a stint and no big deal. They go in and what do they find? He has 95% blockage in his left main artery, right where the main artery branches. No indication of any other stenosis in any other location at all; completely clear otherwise. They couldn’t believe that he hadn’t had a heart attack already. He was scheduled for double bypass – immediately first thing the next day.
The CABG was extremely difficult and grueling to recover from, however, it was a success and he recovered fully – and in fact felt the best he ever felt in his life. His cardiologist afterward noted that perhaps he had has an undiagnosed case of Kawasaki when he was younger, and perhaps he had this blockage (to some extent) all his life that his body had learned to adapt to it. They had no other explanation. (Note: we never mentioned that our son had has KD a few years earlier, she came up with this theory on her own.) This seamed plausible, since he often had very high fevers when he was younger and looking back, my husband can generally say that his whole life, he never really felt that great when exercising, never got that high that he experienced exercising post surgery. And after all, our son did have it as well. Though, there’s little evidence of a genetic component. Anyway, as a last precaution, they took a CT scan of all of the other major arteries in the body to make sure there was no further stenosis. There wasn’t. Thankfully.
Then in Dec 2013, he started to feel unwell again. His was getting terrible, debilitating stomach aches after eating. At first they were infrequent and sporadic and then over the next couple of months, more frequent, though still no pattern. He was a long time sufferer from Crones Disease but that was in remission and he had lactose allergies as a child, but this didn’t feel like either of those. But, he went to see his GI to see what was up. They tested up and down his GI track, did allergy test, experimented with eliminating food groups, etc. Nothing was turning up. He saw his GP and his Cardiologist, they all ran test and nothing. Finally, things got so bad that he pleaded with his GI doctor to not give up. So, the Dr thought a bit more and said, tell your Cardiologist to test for this thing (I can’t remember what it was!). So, he tells her and the Cardiologist doesn’t think it’s this thing, but agrees that since he’s such an unusual case and they really never did find a cause, that a CT scan and MRI of the abdomen is a good idea. They do the scans and find that two of the three arteries going to the stomach were blocked; the celiac and the mesonteric arteries; both approximately 85-90% blocked. Again, no other signs of stenosis anywhere else. Wow. That was a shocker. The scan two years ago didn’t show any blockage and here there were two nearly completely blocked arteries right at the branch from the aorta. So, this theory that the heart blockage was a one time deal…a remnant from his past no longer holding water. He has some sort of active disease that we need to figure out. She refers us to a vascular surgeon to have the immediate situation taken care of and to discuss strategies for how to figure out what the underlying condition is.
So, our next course of action was to begin to shop around for a vascular surgeon to help us with not only the acute situation, but we need some serious help in tracking down what is the underlying disease causing his arteries to close up. Unlike last time where we were in a critical situation and needed the bypass asap, we had some time to really find the best care. Fortunately, we live in the NYC area and have access to some of the best medical facilities and doctors. After visiting with several vascular doctors, who all can’t believe the story and listen to our story in wonderment, we find a doctor we like and determined the best course of action for the immediate situation was to stint both arteries. My husband had the procedure done in Aug of 2014. The surgery was a success; however, they weren’t able to find any blockage in the smaller of the two arteries and couldn’t put the second stint in. That one was a bit of a wild card because it also had compression from the diaphragm – but it’s not as critical to have that stint and he’s feeling great nonetheless with blood flow restored to the celiac artery. Now, with the immediate crisis taken care of we can focus on the underlying causes.
And this is where we are today. We continue to get referred from one dr to the next as they try and figure out what is going on. We’ve had fascinating conversations and spoken to amazing doctors. They’ve by and large ruled out vasculitis and so now our leads have largely dried up. However, one point of interest, and mystery, is the fact that our son had atypical Kawasaki. Did he really have Kawasaki or maybe something else that responded to the IVIG? Maybe they both have this unknown something else? Maybe they both have KD? Maybe they’re completely unrelated. We still don’t have a diagnosis, but we continue to search and are on constant alert for the next weird symptom. As the doctors repeatedly tell us, he’s not the patient that should ignore that odd thing that happens. If he gets any random symptom, see the doctor. We are the people that need to look for zebras. To that end, next on the list of doctors to visit is a vascular ophthalmologist for that random occasional blurriness in the right eye that was previously chalked up to migraines.
Anyone ever heard of a case like this? I’d love to hear it if you have!
Personal stories of individuals and families affected by Kawasaki disease
1 post • Page 1 of 1