Meet A Mom Feature – Sari - Mom Advocate - South OC Moms

Can you please educate our Mom community on what Kawasaki’s Disease is, as I hadn’t even heard about it until I met you?
Unfortunately, a lot is unknown about Kawasaki Disease, which is why many people haven’t heard of it and it may be missed by medical professionals. What is known about KD is that it is a severe illness in children, that causes full body inflammation, which can result in dilation of blood vessels in the heart, that can ultimately lead to heart attacks and death. It was first discovered by Dr. Kawasaki in Japan in the 1960s. There are about 13,000 new cases of Kawasaki Disease worldwide each year, and it is increasing.

Why is Kawasaki’s Disease awareness important to you and your family?
Our family was affected by Kawasaki Disease when my son was diagnosed in 2015. Even though my husband and I are both RNs, KD was not on our radar as we were taught many years ago that it is so rare and only affects toddlers- our son was 7 at the time.

He started off with a fever, and what we thought would pass in a few days with a little tylenol did the opposite, as each day a new symptom would appear. We were taking him to his doctor every other day with concerns, as his fever was not coming down, his eyes were gradually getting more red, and a rash was beginning to spread across his body. With each appointment, it seemed as though it was just a virus that should pass, but a sinking feeling was forming inside me-not only as a nurse, but even more as a mom- that we were missing something bigger. By day 8, of watching our child only getting worse and looking deathly ill, we finally told our Dr that we were not going back home.

Thankfully God put the right person in our path that day, as we headed to another clinic for a second opinion. A per diem Dr, who just happened to be working, took one look at our son, knew it was Kawasaki Disease, and sent us to the hospital where he would spend a week and receive the treatment he needed to save his heart. She is our hero, and we feel that without her expertise, more time would have passed without treatment, causing a greater chance of him having serious permanent heart damage. We will never be able to thank her enough!

After 5 years, it almost seems like everything we went through was just a bad dream and it would be easy to forget about it and move on, but I don’t want to forget! I want to remember the feeling of knowing that life can change in an instant and how thankful we were that he was ok and coming back home with us- it was the greatest blessing. I just can’t imagine those parents who are unable to. No parent should have to go through knowing their child is seriously ill, while Dr’s can’t figure out what it is, and then endure the panic that they may be too late.

How can our children contract Kawasaki’s disease?
Unfortunately the cause of KD is still unknown, but it is not contagious. Researchers believe there is something in the environment that the child breathes in, combined with a genetic predisposition, that causes the cascade of inflammation in the body. Much more research is needed to find out what is causing it and a faster way to diagnose it. It affects children usually under the age of 5, (although my son was 7 so it doesn’t always fit the textbook picture, which can make it even tougher for diagnosing). Boys of Asian or African American descent are at higher risk, but it does affect all races and genders.

What symptoms should we look for in our children?
If your child has a fever for at least 5 days plus any 2 of following symptoms: rash, blood shot eyes, red strawberry appearing tongue with cracked lips, swollen lymph nodes, or red swollen hands/feet, you should talk to your Doctor about the possibility of Kawasaki Disease. Blood lab results may show very high platelet levels and heart ultrasounds may find aneurysms, (but the lack of aneurysms does NOT rule out KD).

Is there a test for Kawasaki’s disease and how is it treated?
At this time there is not a specific test for KD. Diagnosis is based on the symptoms and ruling out of other illnesses. Researchers are working on a bedside test to be able to diagnose it much quicker. Current treatment is giving IVIG, which are antibodies from donor blood. It actually takes 1,000 human donors to make 1 dose of IVIG. So consequently, it is very expensive and not available in all countries. Researchers are also currently looking into other treatment options as well.

What happens if this disease goes untreated?
Early detection is key! Kawasaki Disease needs to be treated by 10 days of onset of fever to decrease the risk of causing permanent heart damage. That is why it is so important to spread awareness about its symptoms!

What advice do you have for moms if we think our children may have Kawasaki’s disease?
Since timing of treatment is so imperative to help prevent permanent heart damage, if you think your child has the symptoms of Kawasaki Disease, start discussing with your doctor right away. Rule out other illnesses, but If your child is not improving, seek second opinions if needed and keep KD on their radar. If it is coming close to the 10 day mark, you may need to push for KD treatment. Kawasaki Disease is not THAT rare!

How can Mom’s in South OC help raise awareness about Kawasaki’s disease and are their any fundraisers they can contribute to this week during Kawasaki’s Disease awareness day?
Kawasaki Disease awareness is so important, especially for parents who can advocate for their children! January 26th is International Kawasaki Disease Awareness Day. In honor of this, our family hosts a fundraiser each year to help promote awareness and to give back to the team of researchers at the Kawasaki Disease Foundation, who have dedicated their careers to find answers about KD. Also, I want my son to learn that we can bring something good from a very difficult time in our life and in turn help others. Donations can be made anytime to the Kawasaki Disease Foundation.

Thank you for including our story, helping to spread awareness, and save kids’ hearts!

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