Our Experience with Kawasaki Disease (August 2007)

I am writing this more than a year later (January 2009) so hopefully I still remember clearly....

The week before he got really sick, Bryce got sent home from daycare on Thursday with a fever. He seemed better already on Friday, but we kept him home due to the daycare's policy of not taking kids back for 24H. He seemed a little cranky over the weekend, but not really sick, so we figured he had a mild virus and was recovering.

But on Sunday and Monday, his fever came back, and we realized he couldn't go back to daycare. We took him for the first of several doctor's visits, but were told he just had a viral infection. Worryingly, he seemed to have no appetite (that NEVER happens!) and ate little besides applesauce/fruit and a little yogurt. The doctor said she saw inflammation in his throat; I also wondered if it could be teething pain that caused his loss of appetite. Scott and I juggled our work schedules all week so we could take turns staying home, and my parents offered to come up on Friday to give us a break.

By Friday I was getting really worried. His fever came and went (esp. with Tylenol) but never completely abated, and it had now been over a week. His lack of appetite, crankiness and lethargy were really worrying - he just didn't seem his normal happy self. At one point I thought he was crying in pain while peeing, so I rushed him to the doctor to check for a bladder infection. Doctor Husaini was out but Dr. Foster (her partner) ruled out a bladder infection. He did notice, however, that Bryce had swollen lymph nodes in his neck, so he decided it was some other infection and started him on antibiotics.

Sunday, my parents left, and I was at my wit's end - Bryce seemed no better, even with the antibiotics (i.e. they weren't working!) and in fact my parents had noticed on Saturday that Bryce's hands and feet seemed swollen. We noticed too, that, although he had been crawling on his hands and feet for a few months now, he seemed to be avoiding putting weight on his hands all of sudden, and acted like they hurt him. I thought about it for a while (could it mean anything?) and finally called the doctor again (actually, her answering service, since it was Sunday), thinking I might just mention it to her....

Well, it's a good thing I did, because she called back within minutes, asking if he also had any rash on his body, or red eyes. He didn't, but I did mention that his lips were flushed and red, though I assumed it was due to his fever. Apparently, these last few symptoms were enough, and she told us that Bryce most likely had "atypical Kawasaki Disease", and we needed to take him immediately to the hospital to get a treatment called IVIG. She would have all the orders prepared by the time we got there.

I was crying by the time I got off the phone, but I told Scott what the doctor said, and we immediately packed Bryce into the car and took him to the Lucile Packard Children's Unit at El Camino Hospital. They started Bryce on IVIG that night and we ended up staying 2 nights until the doctors gave him the all-clear (no more fever and no obvious damage from the KD). We were so scared, because the effect of untreated KD is permanent arterial damage, most commonly life-threatening aneurysms that you have the rest of your life....

The hospital stay was not fun (my poor tiny baby had to stay in an industrial-type metal crib) but I was with him the whole time (so was Scott a lot of it) and they knew what they were doing - except for getting the original IV in (that was NOT PRETTY - imagine trying to comfort a poor screaming 11-month-old with no anesthesia, and no way to explain to him why the nurses keep poking him with sharp needles in the hands and feet!) Fortunately, Packard is quiet that time of year - I think there were maybe 2 other rooms occupied, out of maybe a dozen? - and the staff were great (except for that IV!) By the time we left, Bryce was our smiling, eating boy again. He had to stay home with us for 2 more weeks after that, take aspirin for several weeks, and go for follow-ups, including seeing the cardiologist for heart ultrasounds (an annual exercise now). So far, everything is OK and he seems to have escaped any heart/arterial damage and will hopefully have no lasting effects from having had KD.

We are so grateful our pediatrician got her training in San Francisco and had therefore seen cases of KD before - it is so unusual a disease, that she had never actually had a patient with it, since completing her training years ago. Neither my radiologist father nor pulmonologist brother knew what it was, though to be fair, neither is a pediatric specialist. Also, in researching it on the Web, I found lots of stories about kids (here is just one example) getting misdiagnosed, due to: a) similarity of many of the symptoms to other diseases, including meningitis, hand, foot-and-mouth, coxsackie, or just a plain old virus or bacterial infection; and b) ignorance of KD on the part of the doctor.

FYI, the official symptoms of Kawasaki Disease are as follows (from Wikipedia):

Five days of fever, plus four of the following criteria must be met in order to establish the diagnosis. The criteria are: (1) redness of the lips or oral cavity or cracking of the lips; (2) rash on the trunk; (3) swelling or erythema of the hands or feet; (4) red eyes (conjunctival injection) (5) swollen lymph node in the neck of at least 15 millimeters.

Note that Bryce did NOT have all 5 of the generally required symptoms to indicate KD (he only had 4 out of 5 - that's why it was considered "atypical" and it is often so hard to diagnose because of that), but he did have KD and responded to the treatment. So please spread the word about this disease, and also: trust your instinct as a parent, to know if something is really, seriously wrong with your child, and don't give up!

- Susan

p.s. Some thoughts about the cause of Bryce's KD: basically there is no obvious answer yet. He is slightly more at risk, being a young boy of Asian background - but lots of other types of people also get KD. Some research has suggested links to household cleaning products or living near bodies of water, but if it were that simple I expect someone would have discovered something more conclusive by now. Our guess is that the exact cause is unknown (could be genetic), but it may have been triggered by a previous infection that he had the week before - i.e. that he was sick with something else (probably a minor virus), was getting better, and then the KD (that he may have been pre-disposed to) kicked in. Just our theory.