Joe Tomei here. A bit of a different piece, perhaps people have been hearing about COVID causing Kawasaki syndrome (though most of the stories now list it as a mysterious inflammatory ailment that is similar to Kawasaki syndrome or have given it the name pediatric inflammatory multisystem syndrome (PIMS)) As my daughter had Kawasaki syndrome about 18 years ago, I thought that I would relate our experience, not only so parents can keep on the lookout, but also because even in the absence of COVID, you probably want to know about it.
So, we were going to the states to take my oldest daughter to see my parents. We agreed to meet in LA and go to Disneyland. Because of timing, we got hotel near the airport with my folks and then I would drive a rental car to Anaheim Sunday morning.
Getting together was magical and it looked like everything was going well and we went to bed with dreams of Mickey and Snow White. But when we woke up, my daughter said that her neck hurt and my mom, who was a nurse, noted that her lymph nodes were swollen (symptom 1), so we went to an emergency room near the airport. It was packed, with people who didn’t have insurance but couldn’t afford to take a day off. She was running a fever (symptom 2) and we filled out forms etc. Unfortunately, we had a long wait, so long that she became dehydrated and they had to try multiple times before we realized she was dehydrated. Her lymph nodes were getting worse, and so they recommended we take her by ambulance to a hospital with a pediatric department and an ICU.
Her condition worsened, they would administer aspirin to reduce her fever, which would climb back up and so they put her into the ICU. My cousin worked at the hospital, so we were able to arrange a place for my parents to stay and we waited. My daughter stabilized, though began having swelling (symptom 3), though I don’t think the doctors picked up on it as much as we did (and we were even shocked when we say pictures, not realizing how different she looked). They said that she was stable, they didn’t know what to do, and we didn’t either. So we went to our hotel by Disneyland and settled in. After a few days, her temp went thru the roof and we were back in the hospital, but fortunately, a 4th symptom appeared, the ‘strawberry’ tongue. Kawasaki syndrome does not have a test, and can only be clinically diagnosed by the appearance of symptoms (other symptoms are cracking of the lips, rash on the trunk, red eyes (conjunctival injection)) It is especially difficult to diagnose in infants and if patients exhibit 3 of the criteria with a fever, treatment is often recommended.
It’s called a syndrome rather than a disease because no one knows what causes it. I have not kept up with the research, but there is a very strong genetic component, with Japanese and Korean children falling ill much more often, which is one reason why the US doctors did not pick it up quickly. The treatment is intraveneous immune globulin (IVIG), the collected antibodies from blood plasma, which can quickly deal with it.
The primary danger of Kawasaki syndrome is the risk of acquired heart disease, so it is important to treat the condition quickly. This parallels with discussions about how COVID damages a number of organs, leaving the patient breathless even after recovery.
I think it is particularly important for this group because if are in a mixed marriage and this strikes overseas, because of the genetic component, overseas doctors will not be familiar with it.
Anyway, that’s a short tale about our family’s experience with Kawasaki syndrome that I pass on to help folks make sense of some of the reporting about this in relation to COVID and to give parents with mixed kids a warning.