I had already rescheduled the dentist appointments for my two oldest children, I didn’t want to miss them again. My parents had offered to come and sit with my other two kids for the afternoon, so keeping the appointments wouldn’t be a problem. All was going according to plan- except that the baby had been running a fever for the last 48 hours. This being my fourth child, I’m accustomed to the occasional viruses. Still, the fever was persistent- reaching over 104° and even remaining at around 102° after a dose of Tylenol. The day before, I had started alternating with Motrin and Tylenol to try and keep it under control. My concern started to grow when I realized that after taking the Motrin, Noah was consistently breaking out into hives. If you have followed my blog for any length of time, you know that allergic reactions are very common with him (Allergy Induced Eczema). But this was new, he had taken Motrin before without a problem. What a terrible time to develop a new allergy! However, understanding that even the color of the dye could have triggered a reaction, I had asked my husband to bring home something other than the orange colored Motrin we were using on his way home from work. But the new purple color didn’t seem to be any better as I noticed new hives on his cheek and legs within 10 minutes of the dose… yet, in spite of the hives, the Motrin seemed to be the only thing that was keeping his fever down. And now, on top of everything else, it appeared that he was getting pinkeye… and one side of the back of his neck was really swollen. So, while I stayed home that night with the other children, my husband took Noah on an evening trip to the local urgent care.
While at urgent care, Noah tested negative for strep throat, but due to the nagging fever and swollen lymph node on his neck, the doctor treated him for it anyway- assuming it would show up positive in the lab where they would be sending it out. He prescribed him an antibiotic and sent him home. Having an answer and medication obviously gave me peace of mind and I thought surely by the time the dentist appointments came rolling around the next afternoon, he would be feeling better. But when my parents arrived he wasn’t improving. He was lethargic and miserable. His eyes were extremely red, his swollen lymph node was getting bigger. He had thrown up his antibiotic and later his Tylenol. I called his pediatrician to let them know what was going on and to ask if I could try aspirin for the fever, since he was clearly having allergic reactions to the Motrin. The office nurse advised me not to, for fear of Reyes disease, but suggested the standard lukewarm bath… and to take him to the hospital if the fever got any higher. After a short discussion with my parents, we decided that it would be more comfortable for everyone if they took the two kids to their appointments, and I stayed home with the baby and my other son. I could tell he was getting sleepy, and I thought after they left and things calmed down, I’d try another attempt at a dose of Tylenol.
As soon as they walked out the door, I decided to take his temperature. I didn’t want to disturb his rest, but he hadn’t fallen asleep yet and I thought I had better try now, so I wouldn’t have to wake him later. I readied a dose of Tylenol and swiped his forehead. The thermometer read105.5! None of my kids had ever registered a fever that high. I panicked. I ran him upstairs and into a lukewarm bath. I told my 4 year old to keep talking to him while I began to pack a bag. He was so sluggish, I was afraid that he might even lose consciousness. Why was he allergic to Motrin now? I always pray, but I started pleading out loud to God. Why? Why hadn’t God just taken away his fever? I had prayed He would. I knew He could. I couldn’t even think of what to pack… a change of clothes… a couple diapers… that ready dose of Tylenol… I grabbed some loose clothing to dress the baby and headed downstairs. I was fearful and teary when I put the boys in the car. “Just keep talking to your brother” I told my son as I tried to concentrate on driving to the hospital. I called my parents to tell them to come back. “Meet me at the hospital” I told them.
(Side note: My 4 year old was incredible; soothing and calm. He kept his brother’s attention while being keenly aware of my fear and desperation. I couldn’t be more proud.)
Now, not to name names, I hate that local hospital. But they were the closest, and I gave them the benefit of the doubt that they could handle a fever and assumed they would obviously have more options of treatment than my failed Tylenol and Motrin. While waiting in triage, I had stripped his clothing and placed damp cloths on his head arms and legs. They took his temperature and it read around 101°. I asked the nurse if that was possible, for the temperature to have dropped that much after a lukewarm bath? She said it was, but decided to take a rectal reading for more accuracy. It was still over 103°, and his whole face was starting to swell, but still I was feeling optimistic: his temperature was down and we were in a place with professionals that could help. Shortly thereafter, my mother came in and took my other son out to the car with my dad and two other children. He would take them back to my house while she stayed with me. I called my husband to let him know what was happening, and he told me he was leaving work and on his way. But soon my optimism began turning to frustration. Call it “mother’s intuition”, or even common sense, but we were left the next 25+ minutes without anyone checking on my son or administering any attempt at a fever reducer. I could tell by the way he was acting that his it was starting to spike. When my husband arrived, I asked him to get the Tylenol from my car. Thank God I had thought to grab it! I had nothing to lose by trying, and in a triumphant effort, he was able to keep the medicine in his system without throwing up. It had now been about about a total of over 45 minutes since we had seen a nurse or anyone. After about 15 more minutes (of now pure neglect) I felt confident that he had enough medicine in his system to get him to Children’s Hospital, about a 30 minute drive further.
When we arrived to Children’s Hospital I was relieved. I knew we would get help. His fever was now hovering at around 102° (and his face was swollen to almost unrecognizable) while we explained to triage, nurses and eventually doctors what had been happening. I told them everything: the fever, the pinkeye, the swollen lymph node, the trip to urgent care, treatment for step, the antibiotic, the hives and seemingly new allergy to Motrin. The ER doctor explained how they would be doing an X-ray and an MRI, looking at the possibility of an infected lymph node or cyst. They started an intravenous antibiotic since he couldn’t keep medicine down. They tested his mucous for different strains of flu. As results started coming in and ruling things out the doctor would give us updates. It wasn’t an infected lymph node… his SED rate and white blood cell count were high… it could be an infection elsewhere… it wasn’t flu… we need to check his urine for bacteria… I loved the attention to detail, attention to my sick baby. (Thank you nurse Melissa.) With Noah in good hands, I was mostly worried about how I was I going to be able to treat future fevers… I mean I don’t have anything else in my fever-fighting arsenal except Tylenol and Motrin!
As the results kept coming in, the ER doctor would give us updates. She explained the MRI, the X-ray, some of the labs… and that some of the labs wouldn’t be in until tomorrow. Because they had tested for some things that came back questionable, they wanted to do further testing, just to be sure they didn’t miss anything. “Sure,” I thought, “Absolutely.” And then she mentioned that although rare, she just couldn’t rule out the possibility of Kawasaki’s Disease. “Uh-huh, ok,” I nodded. I really thought it was just protocol, the physician being thorough. I was convinced it was a just a virus, a double whammy with a case of pinkeye and an unsettling new allergy. She could have said “It’s possible your son is part alien,” and I would have given it as much attention. Understanding that I had no clue as to what Kawasaki’s Disease was, she jokingly suggested that I don’t google it. She went on to explain that the fever was definitely a symptom. (But fevers often are symptom to everything right?) She mentioned that the unilateral swollen lymph node (a less common characteristic of the disease) was significant in that usually with bacterial infections, such as strep, there is bilateral lymph node swelling (both sides). The pinkeye was definitely a trait of the disease. (But of course with 4 kids, I had seen pinkeye before.) She was very clear that it was too early to determine, but went on (for our knowledge) to describe it as an autoimmune disease where the body attacks the medium-sized tissue. The membranes, the soft tissue in the nose and eyes, are affected but most dangerously it affects the arteries to the heart. Therein lied the reason why she clarified that it was important to determine. If left untreated, the repercussions could be fatal down the road. Now she had my complete attention. The infected person could have coronary heart disease and ultimately a heart attack in their early 20’s. She compared it to your antibodies being Pac-man, chomping up the bad cells; but then it’s like they get so proud of themselves doing such a good job getting rid of all of the bad, that they start to attack everything in their sight and consequently attack the good. She reiterated that it is rare, but she couldn’t rule it out- not yet. He had some classic symptoms, like those red hands. She asked when we noticed the red hands. Red hands? I hadn’t noticed. Oh my goodness. Sure enough, it looked like someone had dipped his hand in red Kool-Aid. What? When did that happen?
According to www.heart.org:
Kawasaki’s Disease: Named after Dr. Tomisaku Kawasaki, a Japanese pediatrician, the disease has probably been in existence for a long time, but was not recognized as a separate entity until 1967. The incidence is higher in Japan than in any other country. In the United States it is more frequent among children of Asian-American background, but can occur in any racial or ethnic group.
The disease has been reported worldwide and in the United States it is the most common cause of acquired heart disease in children. In recent years, it has tended to occur in localized outbreaks, most often in the winter or early spring, but is seen year-round. Kawasaki disease almost always affects children; most patients are under 5 years old, and the average age is about 2. Boys develop the illness almost twice as often as girls.
The heart may be affected in as many as one of four children who develop Kawasaki disease. Damage sometimes occurs to the blood vessels that supply the heart muscle (the coronary arteries) and to the heart muscle itself. A weakening of a coronary artery can result in an enlargement or swelling of the blood vessel wall (an aneurysm). Infants less than 1 year old are usually the most seriously ill and are at greatest risk for heart involvement. The acute phase of Kawasaki disease commonly lasts 10 to 14 days or more. Most children recover fully.
Cause
The cause of Kawasaki disease is unknown. It does not appear to be hereditary or contagious. Because the illness frequently occurs in outbreaks, an infectious agent (such as a virus) is the likely cause. Sometimes more than one child in a family can develop Kawasaki disease, which may indicate a genetic predisposition for the disease.
We learned it’s a clinical diagnosis. There is no test that can positively identify you have Kawasaki’s Disease. And they still don’t know what causes the disease. The best guess is that there are environmental triggers, and only those who have the sensitivity to those triggers will react. They know it is more common in boys, even more so to Japanese boys, and specifically ages 2-5. The symptoms include a high and persistent fever usually lasting 10 days, red eyes, irritability and discomfort, occasionally the single swollen lymph node, the high white blood cell count… If they can mark about 5 things off of the checklist, especially in the absence of other possible solutions, then the diagnosis is made. After the diagnosis is made, quick treatment is preferred; the sooner treated, the less chance of unfavorable outcome.
By the next morning, Noah was diagnosed with Kawasaki’s Disease. There is no conclusive test or cause, but thankfully there is a cure. They discontinued the administration of antibiotics (they are not effective on the disease.) He was given an EKG and echocardiogram to determine any current damage and for future comparison. He started IV IG, Immunoglobulin therapy, within hours of the diagnosis. It was going to be a long process- on a normal administration it could take approximately 17 to 21 hours depending on how quickly they could ramp up the dosage. However, he had an allergic reaction to the initial treatment. After uncontrollable body shaking they had to stop. The next morning, with a few hours of rest, it was pertinent to try again. Through persistent 104° fevers, body aches, the newly-developed skin peeling (another signature Kawasaki’s Disease trait), and all-around misery he completed the full round of IV IG treatment. We were told there was about a 95% success rate after completion. To be given an approval for success he needed to be fever-free a certain amount of (maybe 6) hours. He wasn’t. And so, we started the process again- this time with a 99% rate of success. If he persisted to have a fever… the doctor gave us a couple options of how we could proceed. But I am thankful to say we never needed those options. The second treatment was effective. We gave him excessive but necessary amounts of prescribed aspirin (forget about Reyes Disease). We followed up with his cardiologist and he has been given a clean bill of heart health. As a precaution, before he starts sports, we will follow up again with a cardiologist when he reaches the age of ten.
Why does anyone have to suffer anything? I don’t know. But during all of the hours (and my 40th birthday) spent at the hospital, I had a lot of time to think about all that had transpired. By the second evening I had concluded it was nothing short of a miracle that he had developed an “allergic reaction” to the Motrin. I thought about myself in the beginning of the whole ordeal- in desperation crying out to God, about why now with this high fever Noah had developed a new allergy to the only thing that helped his fever. And how now with a clearer understanding, I was thanking God for the reaction! …One of those Unanswered Prayers song type of things. If I had kept his fever down with Motrin, I’m sure I would have spent days trying to treat strep throat with an antibiotic. It’s likely I would have thought he also was also fighting a virus… that would have explained the rash. I’m sure I wouldn’t have thought twice about the pinkeye- not initially, when time is of the essence. Kawasaki’s Disease wouldn’t have crossed my mind. Usually, the diagnosis of the disease is made around day 5 of the fever. We started treatment at about 3½- because of an “allergic reaction to Motrin.” God was with me through it all. I was (and am) in awe of His faithfulness.
Coincidentally, (because we hadn’t had enough fun) within a week my daughter began to have high fevers, a slight rash and red eyes. Of course we took her directly to Children’s Hospital. Obviously, I was heightened to the possibility of Kawasaki’s Disease. We were assured when we brought Noah home that the disease was not contagious, however, the possibility of them both being exposed to the same environmental triggers was not out of the question. Turns out she had the Adenovirus… and pinkeye. Who’d da thunk?
I should mention that these events took place last year. Oh and interestingly enough, Noah is not allergic to Motrin.
