11/04/2025
Hello everyone,
I usually don’t share personal details here, but I believe sharing this experience might help families recognize this disease if it ever appears in their loved ones.
My son was recently admitted to the ICU with Kawasaki Disease. Kawasaki is a rare but serious illness and the leading cause of heart disease in children under 5. It causes inflammation of the blood vessels throughout the body, including the arteries of the heart. The exact cause of Kawasaki is unknown, though there are theories.
While the mortality rate is low, untreated cases pose high risks of complications that can have lifelong effects. These include coronary aneurysm, pericardial effusion, valvular regurgitation, decreased left ventricular function, MI, shock, sudden death, among others. The risk of complications is reduced by prompt treatment with IVIG within 10 days of fever/symptoms. Symptoms include a high, persistent fever lasting five or more days, rash, swollen lymph nodes, red and swollen hands and feet, strawberry tongue, red eyes without discharge, vomiting, and more. Not all symptoms need to be present simultaneously or at all for diagnosis.
What was most frightening was how quickly our son declined, and how it was dismissed by three different doctors. I am deeply saddened that many families have this experience and are sent home, increasing their risk of serious complications. In our case, our son developed vascular shock, organ involvement, severe hyponatremia, and multiple cardiac issues within four days of initial fever. Before admission, he appeared stable; his fever responded to medication and didn’t last longer than 24 hours. The only indicator that something was wrong was how rapidly his rash spread, looking nothing like the viral rashes I’ve seen in my clinical experience. His red eyes and complete loss of appetite were also warning signs. Three different providers, including the ICU staff, dismissed his illness as a viral rash. A virtual urgent care consultation with dermatology access saved our sons life. I refused to accept the viral rash diagnosis, which led to a dermatology consult. The dermatologist advised us to immediately go to the ER to rule out Kawasaki. This advice allowed me to continue advocating for a diagnosis with the ICU team, even when they thought he just needed hydration.
The key takeaways:
Viral rashes usually appear after an illness and follow a distinct pattern and appearance. Kawasaki rashes can seem harmless at first but spread rapidly over the body in clusters that eventually merge. Initially, the rash may look like a bug bites without blisters, flat in appearance, and then spreads all over the body including across the face, and ears.
Virtual consults often offer services, like dermatology, that urgent care clinics do not. You have the right to ask for this service at any time for any rash.
Fever may improve with medication, making it seem like the illness is resolving. However, IVIG is the only treatment proven to reduce severe complications. Do not let healthcare providers dismiss a Kawasaki diagnosis just because the fever responds to medication if other symptoms worsen.
Your child doesn’t need to have every symptom to be diagnosed. Consider Kawasaki as a differential diagnosis if your child is 5 or under, male, Asian, Pacific Islander, or has a family history.
Above all, trust your gut .
This experience has been deeply traumatizing and emotional for my family and myself.
I appreciate all the love and support we have received during these moments. We are currently In the waiting phase to see if lingering or new complications arise. I am taking the remainder of the year off to be with my family. For those of you with orders with me, please know that I will fulfill your orders and this only has an impact on new/ future orders. Thank you for your continued support. With love,
Amanda
The Turquoise Macaron
