Gracie's Story 9 years old with heart complications

Personal stories of individuals and families affected by Kawasaki disease
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graciesmommy
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Joined: Thu Mar 31, 2016 3:36 pm

Gracie's Story 9 years old with heart complications

Post by graciesmommy » Thu Mar 31, 2016 4:53 pm

Hi, my daughter, Gracie, is 9 years old and recently diagnosed with KD. She received her IVIG on day 26 of her illness. She had her second echo this week, and yesterday we went to the KD clinic for the results. The doctor says that her arteries remain dilated, her heart is still inflamed and her function has decreased. She will have another echo next week. She has special needs and we have to do her echos under anesthesia. She got sick February 15. We took her to urgent care February 16 and the following day we went to the ER at Rady's Children's Hospital San Diego. Even though she had classic signs of KD it was ruled out because of her age and because she tested positive for adenovirus. I will never forget the doctor who responded to my question about if this could be KD, "she is too old for KD". The doctors at the hospital admitted her and gave her iv fluids for 3 days because she had high fevers and was dehydrated. We followed up at our pediatrician's office as instructed, he had us treat her with fluids and rest. They said her fevers, rash, red eyes, extreme agitation, exhaustion, and total lack of appetite and weight loss was because of adenovirus.

She was still sick on March 7, the date the doctor predicted she would be able to go back to school, so I brought her in to the urgent care since no appointment was available during the day. The urgent care doctor was very concerned and made an appointment for us the next day in the office when labs would be open. The day doctor wasn't concerned but I was. I insisted on labs even though it meant driving an 1.5 hours to get her blood drawn at the hospital. Her doctor became alarmed when he saw how high her inflammation levels were. She was admitted to the hospital and diagnosed with KD. Her treatment started 26 days after she first became sick. Both her coronary arteries were dilated, she had fluid around her heart and they had an incidental finding of her left ventricle being enlarged. Currently she is on aspirin and Plavix to prevent blood clots.

katbeevers
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Joined: Thu Jan 10, 2013 9:05 am

Re: Gracie's Story 9 years old with heart complications

Post by katbeevers » Sun Apr 24, 2016 4:22 pm

Sorry to hear that Gracie wasn't diagnosed sooner. My son's diagnosis came 6 weeks after he got sick and as a result has super gigantic aneurysms. How is Gracie doing now?

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