The Kawasaki Disease Forum

On 5-19-14 my 3 1/2 yr old son, Frankie, developed a fever. Two days later his fever remained high, over 103, and did not respond to Tylenol or Motrin. His lymph nodes on the left side of his neck swelled significantly. We took him to our pediatrician where he was given an antibiotic. The next day he did not improve and the fever was climbing, he looked glassy eyed, and seemed to have trouble walking, like an old man with arthritis. Frankie has a speech delay and was unable to tell us the problem. We took him back to the doctor, he now had a rash as well. A different antibiotic was prescribed and instruction given to take him to the ER if he didn't improve, or refused to take the medicine. We took him to our local ER, they did a blood serum and said he was positive for Mycoplasma. We thought we had and answer and yet another antibiotic was prescribed.
The next day (day 5 of the fever) he was worse. His fever got up to 106. We were very scared and called the on call Dr. as it was a weekend. They advised us to take him 2 hours away to a children's hospital. We hopped in the car and went right away. They did an ultrasound on his neck to make sure that it was lymph nodes, and not an abscess. It was lymph nodes. They also drew blood, but said it was negative for Mycoplasma. While at the hospital he developed red hands, feet, and mouth. I pointed it out to them, asking if it could be hand foot and mouth disease. I was told no, there were not blisters, but given no other possible explanation. His eyes were also red with a white circle around the iris.
At this point I called my cousin to let her know what was going on. She says to me, "Have you ever heard of Kawasaki's Disease?" I kind of laughed at her thinking it was an "Asian" thing and my son is certainly not Asian. The children's hospital gave him an I.V. antibiotic and sent us home with a prescription of the same antibiotic he was already on.
The next day, Frankie was not better, he was lethargic, he was in obvious pain, his fever was too high. My cousin calls me again and says, "Please look up Kawasaki's Disease, it would make me feel better if you do." So I looked it up, and thought omg, he has pretty much all the symptoms, but as rare as it is I was still skeptical. My mother, Frankie's Grandmother, is a nurse at a dermatologist's office. I asked her to look it up, she called one of the doctors she works for. That Dr. called me and asked me to send pictures of Frankie to him on his cell phone. He calls back after he sees the pictures and say's "Get him to Iowa City Hospital now, it's life threatening, tell them it's Kawasaki's and you want an ECHO and IVIG right away."
We called the hospital to let them know we were coming and what was going on, 1 1/2 hrs later we were there. The cardiologist and a pediatrician walked in and , "Yep, it is definitely Kawasaki's." He got treatment right away, day 6, and I feel so lucky that we were able to finally get a proper diagnosis. He required 2 rounds of IVIG to break the fever, but his ECHO came back within normal limits. It is now 6/16/14 and he is acting fine. His hands are almost done peeling, his feet have just begun. Another ECHO on 7/10/14 and then we should know for sure that his heart is fine.
So thank you, thank you, to my cousin who pushed me, to push the medical staff. I contacted the children's hospital who sent us away and spoke with the director of the hospital about educating the ER staff. We have ordered a bunch of Kawasaki's symptom posters to place in that hospital, my local hospital, my pediatrician's office, and anywhere else that will put them up.
We also have an 18 month daughter who months before all this had a very high fever that wouldn't respond to meds, as well as a rash. She ended up with critical Neutropenia. I discussed it with her doctor and in fear of an incomplete Kawasaki's we had an EHCO done on her which came back normal.
My main question to the people on this forum is, anyone else have a Mycoplasma test come back positive? I read a Korean study about a link between the two. It also included Strep and Staff as the producers of "super antigens" which set off an auto immune response in children genetically vulnerable, equaling Kawasaki's. I have also found studies of atypical Kawasaki's causing Neutropenia. I will always wonder if my daughter had it, will have it, or if my son will have it again.