The Disease Moms Diagnose

Chelle Roman

You always hear “trust your gut” and “mothers intuition is real”. But, until you’re watching your child deteriorate before your eyes and are hearing doctors tell you that he just has a simple virus, you can’t fully grasp the reality of those simple statements. In May, 2014, my youngest son, Rook, started running a fever. It truly was just a fever. Kids get sick. Kids get fevers. But within a couple days, it felt like more. He wasn’t himself. I couldn’t pinpoint it on day three of the fever when I took him for an after hours appointment on a Sunday, not wanting to wait for Monday morning. He was only two and not able to tell me exactly how he felt, but I knew something was very wrong.

He looked worse yet on Monday and after new symptoms like a rash, vomiting, discolored tongue, and refusing to eat or drink leading to a lack of urine output, I took him to the ER. Again, my gut was just screaming at me. And again, the doctor told me it was just a virus. Her actual words were “it’s just a virus, it will probably get worse before it gets better, so don’t worry about bringing him back in”. Those words echoed in my head for the next 36 hours.

He went 12 hours without peeing once, and when he did, it was the color of iced tea, his eyes became bloodshot, he was lethargic, and I must have called the nurse line three times. They basically said all they would do at the hospital was IV fluids for “obvious dehydration” and that if I felt like he needed to come in, I could always bring him but it would be traumatizing for a two year old to get an IV, so to force fluids as much as possible.

So on night five of fever, after 12 hours of basically sleeping amidst me forcing sips of pedialyte, he finally said he had to pee. As I pulled his weak body off of his plastic froggy potty, I wanted to throw up. Where urine should have been, dark, thick, red blood was in its place. I scooped him up and hollered a “those idiots should have done a urine test! We have to go to the ER now!” to my husband and we bolted. After angrily telling them his symptoms and how we had been there the morning prior, they got us right back, despite a full waiting room.

The nurse took a quick look and listened to me list off his symptoms. She said the next bed opening up would be Rook’s and a doctor would be by very soon. Then I looked to my left and saw a poster with images of various symptoms that said “if your child has had a fever for five days and two or more of these symptoms, ask your pediatrician about Kawasaki disease.....Kawasaki disease is the leading cause of acquired heart disease in children”. Spoiler alert: He had just about every symptom on the poster. “What the hell is that!?” I asked, already knowing what was coming. “That’s what I’m worried about. We’ve already paged the specialist and she should be here within the hour. We’re going to get him started with IV fluids and some blood-work.”

From there it was a whirlwind of tests and doctors and IVs and being admitted to the PICU and more doctors from other hospitals to see what a “textbook case” of KD looked like and scary reactions to intense treatment. Still, Rook was very lucky. As it turns out, with KD there is a 10 day window where treatment is most effective at preventing heart damage and possible death. The scary thing about KD is that the external symptoms eventually fade within about two weeks, but without prompt treatment, the disease continues to ravage the organs and more specifically the heart, causing irreversible damage and aneurysms. Rook was treated on day six. Even with treatment, he still had slight heart damage and will be monitored via echo-cardiograms for the rest of his life. But we were extremely fortunate to have the leading researcher of KD in our local children’s hospital. Dr. Jane Burns and Dr. Adriana Tremoulet, and their amazing team, saved his life and the work they do to find out the cause of KD and to formulate a diagnostic test to make misdiagnosis less prevalent, is remarkable.

In the words of Dr Burns, “Kawasaki Disease is the Disease moms diagnose”. It mimics scarlet fever, hand foot mouth, and other more benign and common childhood illnesses. But the damage it causes can be fatal. She believes it is more common than  Jeremy statistics attest, due to high rates of misdiagnosis. Most KD parents have similar stories to ours, where a doctor made them feel like a hypochondriac for rushing to the ER for a fever and a rash. But parents know their kids.


For more information on Kawasaki Disease and the brilliant work of Dr. Burns and Dr. Tremoulet and their team, visit: https://www.rchsd.org/programs-services/kawasaki-disease-clinic/

What YOU can do to save a child’s heart:

Donate to: http://kdfoundation.org

Know the signs and symptoms.

Trust your gut!

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