The 411 On Kawasaki Disease (KD)
As Moms we never want to even think about a scenario that involves our kids in a hospital. I’m sure we all come to terms with the fact that we all have that one child that will inevitably require stitches, or a cast, on almost a yearly basis. Which, will make us terrified for a moment-then annoyed at how this kid will never learn. But, the scenario I’m talking about, is having to watch your child battle something that they can’t see, or even understand, in a hospital for days. And, let’s be brutally honest, most of us parents feel helpless and as lost as our child as we watch the in pain in a hospital bed.
Yup-this happened to our family about 9 years ago when Izzie was 4 years old. She was 2 months shy of turning 5. What we, and her doctor, originally believed (and we were treating her for) as strep throat. After 3 days of no break in her fever, Rick and I went with our parent “gut feeling”, and took her to Urgent Care. This was where a journey into learning about Kawasaki Disease began. It has become one of our passions to share the wealth of knowledge we have found through our journey with little Izzie. So many parents are still unaware of Kawasaki Disease; what it actually is; what are the signs and symptoms to look for; and the treatment protocol-it’s not the same for every kid. So I’m gonna break this down in a more “parental language” so you can use it as a reference, and share it with other parents as well.
What Is Kawasaki Disease? (No-it’s not a motorcycle)
The medical definition of KD is “an acute inflammation of the blood vessels that primarily occurs in children under 5”. What this means is the poor kids immune system is literally beating the crap out of their blood vessels, which can cause damage to the blood vessels themselves, and their heart. The body should, and will go into defense mode, trying to battle the chaos within it’s own system. This is when the signs begin to show up that something isn’t right. It may even appear as a different kind of illness-in our case it looked like strep throat.
The Symptoms To Look Out For
Fever lasting more than 5 days over 102’
Red Eyes it will be bright red as if their eyes are extremely irritated
Strawberry Tongue truly looks bright red, plump, and bumpy-just like a strawberry
Rash this rash can be on the chest, legs, arms, torso (really anywhere)
Swollen Lymph Nodes like a massive growth on the neck-very obvious swelling
Redness or Swelling of Hands and Feet just like it sounds-they could even be hot
Peeling Of the Skin usually begins around nails
Upset Stomach
Belly Pain
As one could imagine this is not comfortable at all for your poor kiddo, and the worst, is they have no idea why they feel so crummy. If your child has all (or even just some) of these symptoms, ask your doctor to test for KD. Izzie had all of the symptoms. It was horrible.
Treatment For KD
Now, like I said, not every patient has the same protocol because not every patient responds the same to the typical treatment plan. Izzie was part of the 1% of children that required 2 rounds of treatment. The typical treatment is one round of IVIG. This is a unique IV that is infused into the bloodstream called intravenous immunoglobulin. The sooner the child gets hooked up to the IVIG the better the chances of reducing the risk of blood vessel and heart damage. The “mocktail” itself works overtime in reducing the fever, swelling, and preventing any damage to the heart. Sometimes it is necessary to administer aspirin to bring the fever down if the poor kid is in extreme discomfort.
I remember how hard those amazing nurses worked with Izzie to get her to cool her body down. Like clockwork they had to administer ibuprofen every 12 hours, and replace her ice packs every 2 hours for 3 days straight! As one could imagine, Izzie got feisty at some points. (Thankfully we can laugh about those “moments” now.)
In the 1% group of kids, it seems as though they start to feel better for a few hours, and then they begin to fall back down the hill again within a matter of minutes. Izzie was actually sitting up, and even tried to eat on her third day of treatment. Something we didn’t see her do since she had just gotten sick the week before. But, her burst of energy was short lived. Her fever crept back, her eyes began to turn red, and her rash was still there. Her doctor pushed through another IVIG order. This happens sometimes, and parents should not feel discouraged! It sometimes takes 2 rounds. As long as your kiddo gets back to feeling good again-that’s what we want! Within 2 days, Izzie was looking and feeling like “Izzie” again. While they are excited to get back to the usual day to day life, it is crucial to remember that their little body just experienced extreme trauma, so it sometimes take a good 2 months for kids to get back to their vibrant selves.
Post Care For KD
KD is not a check out forever kind of disease. All patients need to see cardiologists regularly to get echocardiograms. These simple “ultrasounds over the heart”, check to ensure there are no long lasting complications from the disease itself. Some children do experience long term effects from KD, they need work with their doctor to keep their heart healthy.
Possible Complications If Not Treated
According to Cleveland Clinic complications of Kawasaki disease include:
Aneurysms (weakness or stretching) in inflamed coronary arteries. In severe cases, this may require coronary artery bypass surgery.
Blood clots and narrowing in coronary arteries.
Coronary artery rupture.
Issues with the heart valves that help blood move the right direction through your child’s heart.
Inflammation in your child’s heart.
Hepatitis in your child’s liver.
Inflammation in your child’s lungs.
Pancreatitis (inflammation) in your child’s pancreas.
Poor heart function or heart failure.
If you would like to find out more about KD check out The Cleveland Clinic.
Kawasaki Disease is treatable and curable. It still sucks to have to go through it, but if our story helps even just one other family in seeing the signs and getting their child treated immediately-I will feel so grateful!
Izzie is thriving with no long lasting symptoms. She was “CLEARED” in 2019
