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.)