Our Experience with Kawasaki Disease

by Ginger on January 26, 2014

in The Kid

Sometime between Christmas and New Year’s, we noticed that Jackson’s hands and feet were peeling. The skin was just coming off in sheets (it was so gross), but only on his hands and feet. It didn’t hurt him, or bother him (other than being annoying), but it was really weird. I sort of figured at this point that it was a delayed reaction to something from when we were all sick in December, although Google of course was willing to tell me of the other random things it could be, one of which was Kawasaki disease.

Peeling handsSo Gross

And thus began a whirlwind few weeks as we began talking with his pediatrician about possible causes, and after ruling everything else out, went through the testing to help determine whether Jackson had Kawasaki disease. I had heard of Kawasaki disease even before my adventures with Google —a local friend’s son had KD as a baby, and I had heard about that experience—but N.C. hadn’t. And I found that it was kind of hard to explain what it is, so let me take this from the Kawasaki Disease Foundation’s website to help:

Kawasaki disease (KD)… is a serious illness characterized by inflammation of blood vessels throughout the body that primarily affects young children and infants. Kawasaki disease is the leading cause of acquired heart disease in children. Although about 80 percent of patients are under five years of age, older children and teenagers can also get KD, but this is uncommon. KD is more common in boys than girls, and the majority of cases are diagnosed in the winter and early spring. It is not contagious… Although it is more prevalent among children of Asian and Pacific Island descent, KD affects people of all racial and ethnic groups. It is estimated that more than 4,200 children are diagnosed with Kawasaki Disease in the U.S. each year. The cause of KD is unknown, although an agent, like a virus, is suspected.

Kawasaki Disease is characterized by an inflammation of the blood vessels throughout the body. There is no specific test for KD; doctors make a clinical diagnosis based on a collection of symptoms and physical findings. Early symptoms of KD include:

  • Fever that lasts for five or more days
  • Rash, often worse in the groin area
  • Red bloodshot eyes, without drainage or crusting
  • Bright red, swollen, cracked lips, “strawberry” tongue, which appears with shiny bright red spots after the top coating sloughs off
  • Swollen hands and feet and redness of the palms and soles of the feet
  • Swollen lymph nodes in the neck

In the later stages, some of the symptoms can be:

  • Peeling of the skin on the hands and feet, especially the tips of the fingers and toes, often in large sheets
  • Joint pain
  • Diarrhea
  • Vomiting
  • Abdominal pain

Jackson was a bit of an odd case, because he had a few symptoms clearly (the peeling was what started us down this path remember). He clearly had swollen lymph nodes, but that could be attributed to any number of the illnesses in November & December. Some he had, but not for as long or as severe — we don’t think he had a fever for 5 days, he had a mild rash but not in the typical areas, and while he had the cracked lips, he didn’t have the “strawberry tongue. Some he *may* have had, and we missed in the sickness filled days of December. And some he didn’t have at all.

We were lucky though because there is an amazing KD research clinic in San Diego headed up by amazing specialists. Jackson’s pediatrician consulted with them after getting some blood work done and they decided that we should take Jackson in for an echocardiogram and then meet with the Kawasaki specialist. So we did that.

The reason that it’s important to catch Kawasaki is because without treatment, about 25% of children develop heart disease involving the coronary arteries and other areas of the heart, the most serious of which is an aneurysm. SO! We decided we weren’t going to mess around.  Even if his symptoms were not cut and dry classic Kawasaki presentation, if his pediatrician and the specialist wanted to do an echocardiogram to make sure he didn’t have heart damage, we were going to listen.

The GREAT news for us is that Jackson’s heart is (in the words of the KD specialist) “perfectly perfect.” His heart looked great on the echo, and we were told that we don’t need to worry about any scary heart problems. Which, I’ll just say, I slept SO MUCH BETTER the night we found that out than I had in the week waiting for the echo (I never freaked out during waking hours, but apparently my subconscious was stressed about it. Go figure).

The “well that’s annoying” news is that…we don’t know if Jackson had KD. After going through every single illness and symptom he had between November & January 15th (when we met with them), and going over the blood work, the KD doctor said that he had enough symptoms that he might have had it, in a very mild form, but that we may never know for sure. According to them, even though the “classic” presentation involves 4-5 of the above symptoms, it is not unusual for it to be present with fewer symptoms, or less severe symptoms. And I’ll be honest, had Jackson not had the peeling, we never would have given a second thought to any of his other symptoms. We were all sick, and they aren’t at all unusual symptoms of a million different ways kids get sick.

So, why am I writing about this? Well, January 26th is Kawasaki Disease Awareness Day, and after going through all this, I thought the least I could do was to write about our experience and try to bring some awareness to anyone who may read this. The doctor we talked to said that they believe Kawasaki disease is under-diagnosed because so many of these symptoms would get lost in “typical” illnesses. Fever, rash, swollen lymph nodes in particular, those can be so many things. Peeling hands and feet can be found sometimes with strep, and scarlet fever (which is a strep bacteria). And in the winter especially, when little kids pass so much gunk around, who knows how often this gets missed. Many doctors (and many things on Google) will tell you that *unless* your kid has at least 4 of the primary symptoms, it’s not KD. It’s only because our pediatrician knew what KD was, and knew the specialists, and because we were able to talk directly to a specialist, that this ever even came up for us.

I don’t write this to scare parents or to make you question every random time your kid is/was sick. But, I do want you to know this is out there. According to our KD doctor, it’s not as rare as Google makes it out to be, and if your kid ever has a grouping of seemingly random symptoms, particularly a random high fever, that don’t seem to jive with strep, or the flu, or pink eye, or a rash…I want you to know that this possibility exists out there. There is good, effective treatment for KD, when it’s caught in time, if you know to look for it.

We may never know for sure whether Jackson had Kawasaki disease. It could have been just a bunch of symptoms that were close, but not the actual diagnosis. And whether he did or not, we were lucky. But now that I know about KD, and I have read about it, and researched it, and talked to someone who researches it and deals with it every day, the least I can do is tell this story, and share what I know.

If you want more thorough, detailed information about Kawasaki disease, I recommend checking out:

Kawasaki Disease Foundation

Rady Children’s Hospital Kawasaki Disease Clinic

Mayo Clinic

Cloud January 26, 2014 at 2:37 pm

I am so glad Jackson is OK! It is so scary when there is a chance your kid has something serious. We had a serious health scare with my younger kid. We had to have tests to rule out cancer and cystic fibrosis. Fun times. I was so grateful when all of the tests came back negative- even though that has left us with a kid who just gets a lot of fevers for no known reason. That is far better than the alternatives, and going to get all of the testing done, we saw many families whose health scares turned out far worse than ours. It really sorted my perspective out.

Jesabes January 26, 2014 at 2:48 pm

That’s crazy! I’m so glad Jackson is fine. It sounds like it was really scary.

Sarah January 26, 2014 at 3:11 pm

So happy things turned out well for Jackson.

emily January 26, 2014 at 4:03 pm

how horrifying. i’m so glad to hear that he’s ok, and thank you so much for bringing awareness.

Erica January 26, 2014 at 9:06 pm

Wow. Thanks for the info.

melanie jean juneau January 27, 2014 at 9:27 am

good info- horrendous

bekah January 27, 2014 at 11:25 am

Wow, that must have been a very stressful time for you all. I am glad he is “perfectly perfect”! Thanks for the informative post. I willl be honest, I have hears of KD, but I wouldn’t have been able to tell you what it was – just the name stuck out to me in the past.

Nonsequiturchica January 28, 2014 at 1:04 pm

How scary! I’m glad Jackson is okay. Thanks for the info on KD though!

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