Any parent knows the feeling of helplessness that overcomes you in the middle of the night when your child wakes up crying, they feel warm, and you see a number on the thermometer, like 104.0. You know you’re in for a long night of holding, cuddling, comforting, and trying to bring that fever down.
But if it’s your new baby, you’re already sprinting into action, putting on pants, and finding a matching pair of shoes to take them to their first ER trip. This was me. I was the mom wearing the sweatpants, the robe, and a very tired but worried face. To complicate things more, I was out of town alone with my 5 month old and 3 year old.
This started out like any other common childhood illness.
ERs give me anxiety. I tend to word vomit every single thing that has happened leading up to whatever the reason is for our ER trip.
“There was fever of 104.0.” I’ll spare you with the condensed version.
Then there’s vitals, needles, fluids, and tests. You sit there holding your breath, all while you know something is wrong and as much as you hate for there to be something wrong, you hope they just find something. You also hope its minor and easily treated.
For us, the first answer was minor and easily treatable; it was a UTI. A round of antibiotics was the plan.
When you finally get out of the ER, after what always feels like an eternity and your bones are practically frozen from the cold, you go home and back to the cyclical motions of cuddles, snuggles, and medicine. The medicine should start to make them feel better, right?
For us, it didn’t. In between what should have been cuddles and snuggles, was fussing, crying, vomiting, and a lot more temperature taking. I can now tell you from experience, nothing sinks your heart more than seeing a number like 105.0 on the thermometer. We repeated the entire last 24 hours: ER, vitals, needles, fluids, and tests. Only to come back with the exact. same. answer.
At that moment, “ok, thank you.” was all that came out in an effort to convince myself that a UTI was all that was wrong with him.
We all have that mommy instinct. It’s that internal alarm that goes off when we feel something is just not right when it comes to our kids. Mine was blaring.
We went back to our cyclical days of crying, holding, fever, medicine. I tired so hard to ignore my mommy instinct and convince myself that it really was just a UTI. As the day went on, new symptoms were thrown into the mix and in an effort to further convince myself this was nothing serious, I came up with an excuse for every single one.
He developed a rash…must a reaction to antibiotics.
He lips got really chapped…we were visiting Chicago and he’s never been in such cold.
His hands and feet looked swollen…no, he was just my super chunky baby.
But as a few days passed his eyes became so bloodshot that he looked like he hadn’t slept in days (we hadn’t). My baby who was big enough to look like he has never skipped a meal, stopped eating.
This wasn’t a UTI. I couldn’t ignore that instinct anymore. I can’t believe I found myself walking through those automatic ER doors again with my baby lost somewhere in the bundle of blankets I was holding.
More vitals….wait, that’s all they were going to do?! I was now the “crazy mom” who keeps bringing her son back to emergency room, where real emergencies are happening for what was eventually diagnosed now as “just a virus”.
I lied above. Nothing sinks your heart more than knowing there was something seriously wrong with your child, to not be able to shake the feeling that if you don’t get an answer, that your child might die, and only be told that this was “just a virus”. I wanted to believe it was just a virus, but I couldn’t.
I counted down the hours until our flight home and I could go straight from the airport to our pediatrician. When I finally stepped into her examine room, she listened, she looked, and asked, “Have you googled all these symptoms?”
Google? Dr. Google only says I have a brain tumor or I’m dying so of course, this would have been my usual go-to. But between the holding, worrying and temperature taking,I realized that I hadn’t. How un mom-like of me.
“What day of fever is this?
“I don’t think he has a UTI. I don’t think this is just a virus. I think your son has something called Kawasaki Disease. He fits all the criteria and it’s only day 6 of fever, meaning he is within the 10 day window, making this highly treatable and I would expect a full recovery. But you need to go to the children’s hospital, like right now.”
*Big sigh* Not sure if it was relief, as a wave of terror still flooded over me but I was relieved that we did have an answer. Kawasaki Disease became the official diagnosis at the hospital where we stayed for several days while he received a treatment called IVIG, its high dose immunoglobulin, and steroids.
We were lucky. Continued tests and monitoring showed that because he was treated on time, he did not develop the biggest complication of Kawasaki Disease, coronary aneurysms.
Many kids aren’t that lucky. Kawasaki Disease is the leading cause of acquired heart disease in children because they were misdiagnosed over and over. Kawasaki Disease attacks the heart by causing inflammation in the coronary arteries, which can lead to aneurysms. Had my pediatrician not been on top of it, missed the diagnosis, and we didn’t receive treatment in the 10 day window, he would have had a 30% chance of developing an aneurysm.
If your child exhibits a high fever over 101.0 for more than 5 days and any combination of:
Swollen lymph node
Red and swollen hands and feet
Please bring up Kawasaki Disease to your pediatrician. It can often be confused with other illnesses. We were misdiagnosed 3 times by other doctors while we were out of town. You know your child best and with this disease, you just KNOW something isn’t right.
Kawasaki Disease Awareness Day is January 26th. For more information, please visit Kawasaki Disease Foundation