Personal stories of individuals and families affected by Kawasaki disease
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It was a Sunday night. Jada began with a fever and then vomiting early Monday morning. She was drinking well, but had no appetite. We took her to the pediatrician. Negative strep culture. They said it was viral and to treat the fever with Motrin. The fever persisted. Jada complained of abdominal pain for the first few days but this subsided. On about Tuesday the rash began. It was Red, not raised, on her stomach, her neck, her legs and groin. On wednesday it became itchy. We took her back to the Pediatrician as the fever persisted. It never surpassed 103 the entire time she had a fever. They said to stop the Motrin and let the fever run its course. On Friday the symptoms worsened, including the Strawberry tongue with white raised bumps, cracked lips, purple colored hands and feet and the red eyes- not blood shot, pink. In speaking with the pediatrician on the phone, this was the first time the term Kawasaki was brought up. My wife and I began to research and naturally became concerned. Jada never complained of aches. She never complained that anything "hurt". She wasn't eating well, but she was beginning to regain her appetite. She was still lethargic and was napping throughout this process (she isn't a napper at all). The odd thing is that though the red eyes, the rash, the tongue (basically all the physical symptoms) continued, the fever broke, dropped to a low grade on Saturday and then basically back to normal on Sunday. Her spirits were back up, she was playing with her siblings, we thought the "virus" was working itself out. Monday, physical symptoms still pronounced, took her back to the pediatrician and they took more blood work. Blood levels were slightly off. They suggested we head to the Children's unit at the hospital. We sat in the ER for 5 hours. Jada still didn't have a fever. They could not make a definitive diagnosis of KD, yet they could not rule it out. They admitted her Monday night (7 days after on-set of symptoms). They began IVIG on Tuesday. This took about 16 hours. They dose slow due to the side effects. Jada's blood pressure dropped, so they turned down the IV even more. That evening, she looked better, she felt better. She asked for McDonalds and she ate the whole Happy Meal They started her on high dose aspirin. The Ped Cardiologist ran the cardiac imaging. No issues with coronary arteries/veins. Small leak in the mitral valve and a slight heart murmur. We were told both would clear up on their own and might be unassociated with the KD. That night she ran a fever of 101.5. The next morning she looked "sick" again. IVIG can "cause" a fever so they wanted to keep her around to see if it was the IVIG or the return of a KD related fever. The fever subsided in the afternoon and the evening she was getting back to normal. They kept her again on Wednesday night as a precaution. Thursday morning (Jada's 5th birthday ), she was doing better, fever gone, all physical symptoms gone. They said that we did not have to limit her physical activity. She was discharged. Today is Friday and we had her birthday party with friends. She had fun, but did not over do it. Tonight, we as we were getting her ready for bed, we noticed another red rash. It has shown up in different spots and is not as severe but it has some similar characteristics. Her temperature remains normal. We called the infectious disease attending who was over seeing her care and he said a rash without the fever is not a huge concern. We took a picture of the rash, sent it to him and are waiting for his reply. The scary part of KD is that there are so many variations, so many symptoms, its hard to get a handle on. Also, the unknown origin can be maddening if you let it get to you. Praying for a favorable outcome here. My sweet little girl has already gone through way too much.