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'You Never Think It's Going To Happen To You': Mom Shares Child's 10-Day Ordeal With Kawasaki Disease

The first ten days from the onset of symptoms is crucial for a Kawasaki Disease patient.

It’s easy to dismiss that your child could have possibly acquired a rare disease when the symptoms are as common as a cold and a fever. Such was the experience of Cherrie Julian, mom to then 19th month old Adeline or “Addie” who was diagnosed with Kawasaki Disease early this year.

Kawasaki disease symptoms

Day 1-2

Cherrie recalls that Addie’s symptoms began before New Year’s Eve. Their family was welcoming 2023 and while the whole country was in a celebratory mood, Cherrie was worried that Addie had been having on and off fever throughout the day.

“Umaabot ng 38-39 degrees. Mawawala for two hours and then she will heat up again,” Cherrie recalls. Addie was nursing a cold which Cherrie attributed to the chilly weather from their recently-concluded family vacation in Subic. 

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Addie could not sleep on her own, she only wanted to sleep on her mom Cherrie.

Day 3-4

By the third day since the onset of symptoms, Addie still wasn’t feeling well. Worse, she didn’t want to eat and for Cherrie and her husband Gelo this was the first red flag. “We consulted our pedia to ask if bloodwork needs to done,” says Cherrie. Results showed that Addie’s White Blood Cells (WBC) count were beyond normal. “Because it was through teleconsult, we can only be advised so much and based on her blood count it could be possible UTI or tonsilitis,” shares Cherrie.

Day 5-6

On the fifth day, Addie has not improved and still refused to eat, so the Julians were advised to rush her to the Emergency Room (ER) and be given intravenous (IV) fluids. At the ER, Addie was diagnosed with Community Pneumonia. They were about to go home but just at the right time, their pediatrician arrived at the ER and saw for herself Addie’s state-- her eyes and lips “were quite red” and knew something was not right.

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Addie on their first night at the hospital.

“She advised that we be admitted so they would be able to run further tests,” Cherrie recalls. “It was at that time that our pedia mentioned Kawasaki Disease but I did not know much about it or its gravity.”

According to the Center for Diseases, Kawasaki disease (KD) or Kawasaki syndrome, is an acute febrile illness of unknown cause that primarily affects children younger than 5 years of age. It was first discovered by Japanese pediatrician, Tomisaku Kawasaki in 1967 with the first cases outside of Japan reported in Hawaii in 1976. Typical symptoms include fever, rash, swelling of the hands and feet, irritation and redness of the whites of the eyes, swollen lymph glands in the neck, and irritation and inflammation of the mouth, lips, and throat. 

While usually treatable, it is important that children with the disease receive treatment within 10 days of onset of symptoms since it commonly leads to inflammation of the coronary arteries.

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Day 7-8

Addie had manifested a few of the symptoms but further tests were needed. On the 7th day, they did another blood test and results were not encouraging. “Her WBC count was still high but her temperature was already normal. She was back to 36-37 degrees but you can see in her eyes that she is not better,” says Cherrie.

Around this time, UTI was ruled out because the antibiotic did not seem to work. Suspecting Kawasaki Disease, their pedia requested for a 2D Echocardiography test and the results confirmed Addie had Kawasaki Disease.

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“Her veins were swollen and had the size for a three-year old,” Cherrie says. Around this time, Addie already had red eyes and strawberry tongue which was swollen and bumpy with pustules. “It was a lot to take in,” Cherrie says. “When I Googled, it was a fatal and rare disease but praise God that my pedia was so comforting that it’s a blessing that we detected it on seventh day. We had the eighth, ninth, and tenth day to treat the disease,” she adds.

IVIG or IV Immunoglobulin is the typical medication used for Kawasaki disease. It contains extra antibodies that the body cannot produce. On the average, it costs around Php14,000 and up per vial and the number of vials usually depends on the weight of the patient.

On the night of her seventh day, Addie was given IVIG. “That was the longest night of our lives,” recalls Cherrie. “It was just a transfusion, but my husband and I stayed up to check if the flow is good or if pressure was too high. We were praying the whole time.”

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Day 9-10

The transfusion took between 12-14 hours and finished at 11 AM the next day. “In the morning we saw improvements,” recalls Cherrie. “She was less irritable, her eyes and tongue were less red and she was more calm.” The Julians were grateful that Addie responded well to the transfusion. Some 2% of children initially reject the medication and to repeat medication can also be costly. 

The first sign that Addie was getting better was when she asked for food, says Cherrie. “She wanted to eat so that was a relief for us.”

Addie is now 21 months old and after six weeks of taking aspirin as blood thinner and a 2D Echocardiography, she is now free from any medical treatment. But because Kawasaki Disease is a lifelong condition, Addie still needs a yearly 2D Echocardiography to ensure that there is no swelling in her arteries. “So far there are no lingering effects. The doctor just told us to be careful na huwag siyang magka sipon or lagnat lalo na COVID-19,” Cherrie says. 

Cherrie says that they have overcome their biggest ordeal yet as a family.  She has some takeaways from their experience especially for parents whose child are also fighting Kawasaki Disease.  

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The Julians at a recenty family vacation in Hong Kong, a month after Addie's 10-day ordeal with Kawasaki Disease.

Lessons learned from Kawasaki Disease

1. Rare doesn’t mean that your child won’t get it. 

Kawasaki can be triggered by anything from cough, cold, or fever.

2. Consult your pediatrician.

And don’t self-medicate because in our daughter's recovery, our pediatrician was the key. It takes a trained eye to see what’s happening.

3. Be observant.

This is key especially if your child cannot articulate how she is feeling. Observe if there is anything different in their eyes, lips, tongue, or bowel or in their daily routine. All these can help parents detect if something is amiss. 

4. Be prepared financially.

The treatment for IVIG is not cheap and it is usually based on the child’s weight. 

5. Don’t blame yourself.

Pray that their body would take it well. Shower your child the love and security and comfort that they need because they are experiencing something that they don’t understand and their only comfort is you.  We brought Addie’s cooking set and favorite stuffed toys in the hospital so it won’t be a sad place for her.

6. Be open to whatever treatment will be needed.

You are the strength your child needs at this time so shower them with love and care and pray that your child will get healed.

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