Our daughter Noelle was 9, almost 10, when she was diagnosed with Kawasaki disease. After running a fever of 103-104 for 11 days, and visiting the ER twice, an infectious disease doctor, her pediatrician, and an urgent care clinic, we were terrified at what my be happening to our daughter. On a Sunday evening my daughter lay on the couch, pushing us away when we would try to comfort her. Normally our daughter is a very cuddly, energetic girl, and her not wanting anything to do with us was a very big change! Her eyes were blood shot, her mouth was throbbing, she had a rash, and her hands were swollen. She has been misdiagnosed with a bladder infection, the flu, and strep throat. As I watched her lay there I knew we had to keep fighting for answers. So, again we took her to the ED, explained for the 100th time what the previous doctors had told us, and begged them to find answers. As the ER doctor visited with us, she reluctantly admitted us, saying that her illness looked "coxsakie" ish. I could not help but feel like they thought I was over reacting.
The next morning my husband and I met the person who finally diagnosed our daughter! I am convinced this man saved Noelle's life. He told us she had all the classic symptoms of Kawasaki disease (even though she was out of the normal age range). He ordered an echocardiogram to assess for dilation to her coronary arteries to make sure of his diagnosis. Sure enough, there was dilation. Since KD needs to be treated within 10 days of onset of symptoms, our Noelle was outside of that range. He explained that the research does not tell us how much the treatment will help in the long run, but we had to try. So, Noelle was administered a dose of IvIG. He explained that if it was working her fever should be gone within 4 hours.
To our dismay, she woke up with another fever in the middle of the night. I was so scared to know that the treatment had not worked! When the doctor returned that day, I remember asking him if he thought our daughter would die. His reply comforted my heart, that kids with KD get better. But we have to fight to prevent Heart Disease in the future among them.
The next treatment he wanted to try was Remicade. Within an hour of having Remicade Noelle's fever went away. The doctor came in and talked with us, and believe it or not, discharged us home. From this point it was several months of seeing infectious disease, her pediatrician, echocardiograms, and cardiologists. As an answer to prayer, and through the intelligence of our pediatric infectious disease physician, and hard work of several nurses, Noelle's heart has returned to normal.
All in all, she was sick for 3 weeks, in the hospital for 7 of those days. A year later I feel like I am at a place to even write about it. I hope our story encourages other families to advocate for their children, even when medical professionals say you are wrong. YOU are the expert on your child. With KD it is necessary to get an early diagnosis. I know our story's ending is different than other families. We must fight to get the word out for early diagnosis's to happen.
Totally returned to baseline