Kentucky parents share experience with Kawasaki Disease during awareness month

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Posted at 6:00 PM, Jan 27, 2022

(LEX 18) — January is Kawasaki Disease Awareness Month.

The severe illness mostly impacts young children. On average more than 4,000 kids are diagnosed in the United States each year, according to the Kawasaki Disease Foundation. But doctors still don’t know the cause and many parents have never even heard of the disease.

That includes Angie Pulliam and Dezna Napier, two moms whose children were diagnosed with Kawasaki Disease.

Angie’s son Will was around five-months-old when he got sick at the beginning of 2020. He’s now an energetic two-year-old who loves playing with his older sisters, so it’s hard to imagine him sick in the hospital for a week.

“He is your typical, spoiled rotten toddler,” Pulliam told LEX 18 at her Frankfort home she shares with her husband Rick and their four children. Will is their youngest.

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His ordeal with KD started with a high fever that lasted days. Pulliam said he wouldn’t drink or eat, and then he developed a rash that’s common in Kawasaki patients. After being misdiagnosed multiple times, they ended up at Kentucky Children’s Hospital in Lexington. That’s where doctors finally told them their son had Kawasaki Disease.

“You’re sitting there watching them do all these things to your child, and you're still trying to process what's going on, and you're trying to stay strong, but you want to cry the whole time,” Pulliam said.

According to Norton Children’s Hospital, the first symptom of KD is usually a fever that lasts for at least five days. Other symptoms can include:

  • Severe redness in the eyes
  • A rash on the stomach, chest and genitals
  • Red, dry, cracked lips
  • Swollen tongue with a white coating and big red bumps (called “strawberry tongue”)
  • Sore, irritated throat
  • Swelling and a purple-red color in the palms of the hands and soles of the feet
  • Swollen lymph nodes

If kids are treated early, they usually recover within a few days. At the hospital, the preferred treatment for KD is intravenous gamma globulin or IVIG.

However, untreated KD can lead to heart complications because kids might develop vasculitis, which can affect their coronary arteries. Doctors haven’t been able to figure out what causes kids to develop the disease, but they suspect it’s an agent like a virus. It could also be associated with genetic predispositions or chemicals.

Pulliam said when she finally got a diagnosis for Will, she was “scared, but relieved.”

Dezna Napier, who lives in Montgomery County, doesn’t know Pulliam, but she knows how she feels.

“I knew something was wrong,” she said. “Just scary.”

Napier’s daughter Emery was diagnosed with KD in August 2020, when she was 15-months-old.

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“You don't want anything to be wrong with your kid ever, but when it's something so dramatic,” Napier said. “It was so drastic. Her eyeballs, everything was so red.”

According to Napier, Emery ran a fever for days and then developed a rash. Before her daughter received a diagnosis, Napier was mystified at what might be making her daughter so sick.

“I couldn't even fathom what was wrong,” she said. “I couldn't come up with an idea of what was causing it.”

Thankfully, Emery spent about three to four days at Kentucky Children’s Hospital, where she recovered. She also recently “graduated” from seeing a cardiologist for Kawasaki Disease.

Will is healthy now too, although Pulliam said her son will have annual cardiologist appointments for the rest of his life.

But both moms are grateful their kids got better and they’re ready to help others learn about this disease.

“Life is so fragile,” Pulliam said. “Especially when it’s one of your kids.”

“We didn’t know what we were facing,” Napier told LEX 18. “We didn't know anything about Kawasaki Disease really. But I want awareness out there, for parents to know what this is.”

You can learn more about Kawasaki Disease here.