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My Scary Experience with My Son’s Fever

In case you missed it, here is a recent post from “Rosie to the Rescue”, my blog for Parents Magazine.  Here I share my scary experience with my son in an effort to raise awareness on Kawasaki disease.  Don’t miss the rest of the “Rosie to the Rescue” posts, available here.

It all started with my Wellington, my middle child, having a simple fever, a rash, and the thing we all so often hear from our pediatricians: “How long has your child had a fever? If it’s been for five days or more, we will run some more tests.”

I have to admit I had no idea why this magic number of five days was so important, having never had any of my children ever run a fever for that long. The concern would come and go as quickly as the fever passed.

Well, not this time. Multiple doctor visits, two trips to the ER (one of which we left with a misdiagnosis of an allergic reaction to penicillin), an ambulance to a pediatric hospital, a lot of tests, some miracle medicine, an ecocardiogram, and several infectious-disease doctors and cardiologists later, it seems as though everything is going to be okay.

My son was diagnosed with Kawasaki disease. It’s a disease of unknown cause that attacks the blood vessels and ultimately the heart if it is not treated within a critical window of time. My husband and I held our son in my arms while he received the medicine he needed, and we watched our little boy go from so sick and in pain to our smiley, cuddly laughing little boy once again. We will forever be thankful for the scientists who had done the work to learn how to cure this rare disease.

We are still recovering from the experience, and have a future of follow-ups ahead of us. But in looking at our experience, at what went right and what went wrong, I learned something so important: You know your child best. You must advocate for him (or her) if you believe him to be sick, and you must not give up until you get to the right doctor, to the proper care, and have the answers to your questions.

Wellington is going to be okay because of our perseverance and because of the access we had to the right doctors. Only in my nightmares do I think what could have happened if we hadn’t persisted and hadn’t listened to our gut that this was more than a common virus, this was not an allergic reaction, that something was very, very wrong.

Wells is back to his old ways, he’s eating like a champ, flirting with the ladies, and has a quest for adventure and learning that only a toddler could. I am thankful every day, and I know now to always listen to my gut.

Comment Feed

6 Responses

  1. When my son Charlie was born he always seemed to spit up more then my daughter, Lucy. But i just thought and the Dr thought it might have been reflux. When he was three weeks old he began projectile spit up every time I laid him down and fed him I called the Dr and said something is not right! We took him in and he had lost a few ounces since his last appointment. They sent us to do a barium swallow and after a very clear sign that it wasn’t digesting he was diagnosed with Pyloric Stenosis. A simple surgery fixed the problem and he is now healthy little one year old, but had we waited he would have become severely dehydrated and could have gotten much worse. Ever since then I listen to my Mommy instinct and take my kids in even if we have been there twice in the week! More often than not my instincts are correct and they needed to be seen.

  2. Hi Rosie! We recently went through the same thing with our 3 year old daughter this past October. We were in and out of the MD’s ofice and they simply passed it off as the flu. I knew it was something else and I persistently called other MD’s. Her fever lasted almost 7 days and it seemed as if no one believed me that she was experiencing so much pain due to muscle some inflamation. After a very long visit in the ER, we finally were able to have her admitted and she was diagnosed with Kawasaki and they were able to give her the medicine just in time. She is still doing follow up visits with her cardiologist (who I feel has taught us so much more about the diseases than the hospital did), but we were very lucky that she is doing better! I hope your family the best!

  3. HUGS Rosie from one KD parent to another! You should join us next year for the annual KD Foundation Gala!

  4. alreet
    That’s a nice post.

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