Meet Joey

Our son Joey was a perfectly healthy baby until he wasn’t. I remember he had a low-grade fever on a Saturday evening and I began to treat it with Tylenol figuring it had to do with him teething. He was 9 months at the time. Two days later he still had a high fever that would only go down a bit with meds. I decided to take him to his primary doctor who examined him and noticed some redness in his ears which he thought was an early sign of an ear infection. So he prescribed us an antibiotic, 24 hours after giving Joey the antibiotic he developed a rash all over his back and abdomen which eventually spread to all over his body. I assumed he was allergic to the antibiotic since that was the only new thing he was ingesting. I went back to his doctor and he prescribed a different antibiotic and sent us for blood work. Upon receiving the blood work results my pediatrician called and said that if there are any more changes to his condition that I was to take him to urgent care, that’s when I became increasingly more concerned. What did he know that he was not telling us? Well, eventually he did not get better, and then more symptoms appeared such as redness in the whites of his eyes and continuous HIGH fever. I took Joey to urgent care where we waited for 5 hours in a freezing cold waiting room that brought down his temp. They poked him for blood work, they took chest X-rays, AND finally, when we were taken back we were seen by a nurse practitioner who looked at me like I was making a big deal out of nothing. “It’s probably viral,” he said, followed by “we’ll need to get a urine sample by way of a catheter.” I’m sorry? You want me to let you stick a tube up my son’s private area to get urine for a test that you don’t even believe is necessary?! Absolutely not. I wanted answers but I knew this wasn’t going to be the practitioner who was going to be able to provide me with any. He treated us like a waste of time and I left frustrated and frightened. The following day his fever continued and our primary told me that if the fever continued for another day we’d need to go back to urgent care, this time he directed us to a hospital that has a children’s hospital and children Urgent care/ER. At 3 am on Thursday his temperature skyrocketed again and we couldn’t wait any longer, we took him to Loma Linda Hospital. We waited quite a while again but as soon as we were taken back, the ER doctor walked in, took one look at him and said…”I can tell you right now that he WILL be admitted” she gathered info about his symptoms and told us she believed that he may have Kawasaki Disease. I felt immediate relief, SOMEONE FINALLY BELIEVED there was something bigger going on here. But at the same time, this rush of fear came over me, what the heck is Kawasaki Disease?! I remembered it from an episode of Greys Anatomy and how the storyline was about a tired mom who was frustrated because numerous doctors told her it was probably viral until she fought for her son to get the attention he needed. My poor Joey had to go through another round of exams, and he cried hysterically through each one. Since we were on day 5 of high fevers and only the red eyes, rash, and swollen feet were part of his symptoms he was considered a-typical since he didn’t have all the symptoms (Yet). Once admitted he got an echo and EKG done to see if there had been any change to his coronary arteries, and he had a borderline dilation to his artery, which meant we caught it very early. The plan was to administer IVIG treatment and hope that he would be fever free for 48 hrs. Now I understand how rare Kawasaki is because as much as I appreciated the nurses in that hospital I was trusted that they kept the room ice cold to keep his body temp down when in reality doing so resulted in an inaccurate assessment of whether the treatment was effective or not. He appeared to be fever free for 48 hours, his rash had gone down and the redness in his eyes had almost completely gone away, so they discharged us.

That first evening home, he developed a high fever again. I called our primary and he said to monitor it for 24 hours, and if not to go back to the hospital. By Tuesday we were back at the hospital and at this point he has a mild dilation to his artery. I wish I could explain how useless I felt. Joey was terribly afraid of all the doctors, being back in that emergency room triggered his anxiety and his heart rate would go up to the 200’s. I remember nurses and staff walking by hearing the alarm looking at the monitor and saying “that can’t be right…” oh but it was. Over the course of the next week and half, we tried another IVIG treatment which didn’t work, then we tried Remicade which also proved unsuccessful. By this time pediatrics, cardiology, and rhemotology were all making rounds on him trying to figure out what else to do, by this point he was bording a moderate dilation of his artery, which was very scary for us. I camped out at that hospital only getting to see my other son a couple times. I cried plenty and looked a mess I’m sure. Eventually the team of doctors decided to try a steroid treatment because it appeared that Joeys body had gone into defense mode and didn’t know to shut off, thus indidcating he was experiencing autoimmune issues, which again we didn’t know because he’s never been sick until then. By this time he had developed the dry cracked lips, the rash would come and go, the swelling had gone down some and his fever was inconsistent. Thankfully the steroid treatment worked, and by the following Friday we were finally able to go home. I was too scared to take him home. What if he got a fever again? What if he gets sick from something else because his immune systems been suppressed ? Are we going to have to be fearful of fevers forever? I had so many questions. The Rhumetology doctors were the most helpful in answering my questions in a way that made sense to me. Joey would have to stay on an aspirin and steroid dosage for 6 weeks or so until we could determine if it would need to be long term.

Since discharge we’ve had ongoing follow ups with cardiology and rheumetology to monitor his progress. I’m pleased to say that at his last cardiology appointment his dilation had gone back down to the normal/borderline mild range. He has since come off of the steroids and continues to be on aspirin. It was challenging helping Joey to feel secure again because the hospital stay, all the blood draws, EKGs, ECHOs, and treatments left him anxious and scared of strangers. But 10 months later he’s well adjusted and his anxiety appears to be under control. We are grateful to the doctors who recognized the signs and took our concerns seriously, because of them our Joey is doing well.

Misdiagnosis & Treatments

Misdiagnosis of ear infection and viral infection.

Current Condition

Normal/borderline mild dilation of the coronary arteries. Continues to take half a baby aspirin daily.

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Age at Diagnosis: 9 months

Day of Diagnosis:

Fever, Body Rash, Red Eyes, Irritability

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