Update on Noah and Kawasaki Disease

Noah is still not himself, and now he has another symptom of Kawasaki Disease – peeling skin on his hands and feet. Christian and I are 100% convinced that he has Kawasaki Disease, but the pediatrician has still seemed hesitant to refer us to an infectious disease specialist. We love our pediatrician, but he is pretty conservative. This is not the first time we have had to push him a little for a referral. When Colin was a few months old and we started seeing gross motor delays, the pediatrician said we could “still wait a few months” for a First Steps referral. With Colin’s birth history, I didn’t think that was a good idea and pushed to get the referral right away, and he qualified no problem. When we were looking for a referral to a developmental specialist for Colin, the pediatrician again was not in the same hurry we were, but we did end up getting the referral and the subsequent FAS diagnosis. 

This weekend we got in touch with someone at the Kawasaki Disease Foundation. We thought Noah was safe because the heart echo came back normal, but now we are told that heart problems can still develop. They say the protocol should be to have a heart echo every couple of weeks for three months, then at six months, then annually for two to three years. While the IV gamma globulin treatment (which requires hospitalization) is most effective when given during the time of the fever (Noah had a 102* fever for about ten days, starting right after the Fourth of July), they still think Noah could benefit. I had contacted the pediatrician last week and he said we would just repeat the heart echo in a month. After talking to the people at the KD Foundation, however, I called Noah’s doctor this morning and pushed for a referral to the infectious disease specialist. The pediatrician just called back and, of course, the infectious disease specialist he usually works with (and we already know because he saw Zoe when she came home from Vietnam) is ON VACATION. Hmm. Would have been great if we could have seen him last week, huh? (insert banging head against keyboard here)

The pediatrician is calling the infectious disease specialists at the other hospitals and is supposed to get back to me this afternoon. He said if we can’t get an appointment right away, he might recommend we go to the emergency room at the children’s hospital so Noah can see someone sooner.  A doctor in Chicago who is involved with the KD Foundation e-mailed me and offered to see Noah there, but that’s a three-hour drive for us. This doctor obviously knows KD, so we are tempted to go. If Noah was our only child, we would be in the car on the way to Chicago right now, but it would be very difficult for our other kids if he ended up hospitalized there. Besides, the doctor we end up seeing at the children’s hospital here could be fabulous. It’s a great children’s hospital. We just don’t know anything about whoever it is, and neither does our pediatrician. (Updated: I was able to speak to the Chicago doctor on the phone and she suggested we get blood work and another heart echo here, then reevaluate going to Chicago based on the test results.)

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10 thoughts on “Update on Noah and Kawasaki Disease

    • The infectious disease doc at one of the hospitals is the one on vacation. We ended up coming to the other one tonight.

  1. I have a cousin whose two young twin sons both had KD. I actually diagnosed them based on symptoms (I work in health care but am not a doctor). Their pediatrician also was reluctant to diagnose the boys or refer them to a specialist. The ped seemed to think it was too rare for *them* to have (apparently not realizing that someone does get it!). Eventually I got them hooked up with a pediatric cardiologist, and that is who proved most helpful & made the dx. The boys never got treatment either because they got a dx too late. (I think they may have been prescribed high oral doses of aspirin or acetaminophine or something, though.) But they are completely healthy and thriving today, about two years later. The heart complications are rare. You may try to reach out to a ped cardio doc, though. That may offer more peace of mind. And check your insurance coverage. Maybe it he got dx in Chicago, he could still then be transferred locally and still get treatment closer to you. It may also be worth it to go there if it’s going to continue to drive you crazy not knowing. Some hospitals have Ronald McDonald houses or similar facilities for families – they are cool places & the kids probably would like it at one.

  2. OK, I know you love your ped but I have to say, if you have serious concerns about your kids, it does not seem that you should have to push THIS hard for a referral. I hope that Noah feels better and that he is healthy again soon.

    • Yeah, we’re a little pissed at the pediatrician night now. We called him to tell him that the infectious disease doctor had recommended the IVIG. He called back and talked to Christian and told him that he still didn’t think the IVIG was necessary since Noah had had normal heart echos, and that he “probably” would have been fine without it. Christian was seething.

      • WOW. I’m so sorry. Noah is a trooper. I hope that things can get back to normal for you all very soon. Heart stuff is no joke so definitely erring on the side of caution is a good thing. HUGS.

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