Wednesday, April 11, 2007


At 5 months of age in November of 2000, YDS was a very sick little baby. He started with a low grade fever and crankiness the Saturday before Thanksgiving. By Monday morning, he was very irritable and still had a fever. He refused to take a bottle, but would nurse. He slept fitfully and whimpered in his sleep. When he was awake, he was, quite literally, screaming. I brought him to the doctor. His ears seemed a little pink, so he was prescribed an antibiotic and we came home. He did not improve. In fact, on Tuesday he had a rather alarming rash. He was covered in red spots. Thinking he may have had a reaction to the antibiotics, I called the doctor. He was seen again. They stopped the antibiotics and put him on a Sulfa medication for the "ear infection." On Wednesday, his rash was worse and he was almost not nursing. If he was awake, he was screaming. When he slept, it was in short naps and he whimpered while asleep. Back to the pediatrician's office we went. Our pediatrician, Dr. G. was a new grandfather. He was going away for Thanksgiving to see his new grandson. He brought in another doctor to see my poor little one. Dr. T. and Dr. G. had an idea what might actually be going on, and they told me that YDS might have Kawasaki Syndrome. The criteria for diagnosis included a fever for 5 days, a red rash (the docs considered measles a possibility from the rash), conjunctivitis without drainage, redness of the oral mucosa, peeling of the skin on the hands and feet, swelling of the cervical lymph nodes and enlargement of the coronary arteries. The infectious disease doctors would not even consider the diagnosis until there had been a fever for 5 days. The diagnosis is confirmed by echo cardiogram. In the meantime, we went and had some x-rays done to rule out pneumonia, and some lab work....I am a nurse by profession, and my husband is a commercial cleaner. We had heard of Kawasaki, but we were not sure where. I immediately began to research. I found the diagnostic criteria, and, being a professional, the treatment recommendations. I also found out that the most dangerous time in Kawasaki is in the healing period. Kawasaki can cause aneurysms in the coronary arteries. The treatment in IVIG (Immunoglobulin) and aspirin. My little one was still screaming and inconsolable, but at least I had some information, and to me that makes a difference. Fore warned is fore armed and all that. I realized that I had read about this syndrome on a carpet cleaning board. Carpet cleaning has been accused of causing Kawasaki, but the evidence that there is any kind of link is anecdotal at best.

On Thanksgiving day, YDS rested a bit more than any other day, and it was the only day we did not go to the doctor's office. The doctor who was on call that day did call us twice, though. On Friday, DH had a huge commercial carpet cleaning job that HAD to be done that day (it was in a school), so he went off to work while I went off to the doctor with YDS and his siblings who were off from school that day. Dr. T took one look at him and said he needed to be admitted to the hospital for suspected Kawasaki. The diagnosis would have to be confirmed before treatment could start. I started to make phone calls to arrange for my other children and I went off to the local hospital with YDS. It seemed to take forever for the cardiologist to arrive to do the echocardiogram, and forever after the echo for the results. YDS did indeed have Kawasaki Syndrome (now called Kawasaki Disease). The local hospital is a teaching hospital. The resident who was present upon the admission of YDS brought another resident in to see YDS the next day after treatment had begun. He couldn't believe it was the same child. You see, Kawasaki makes a child look like something out of a bad horror movie. The whites of the eyes, the lips and mouth become as red a coke can. The red bumpy rash covers the entire body, and the hands and feet are peeling. Within hours of treatment beginning, however, most of these symptoms subside. In retrospect, I kind of wish I had taken photos because there really is no way a written description can give an accurate "picture" of how a child looks with this disease.

We were fortunate. YDS responded so well to treatment that he was discharged from the hospital on Sunday afternoon. He was not the same child as he had been prior to Kawasaki, however. YDS had become extremely clingy. He would allow only DH and I to hold him. He continued to refuse a bottle (we wound up going to a cup), and he still screamed. We had to give him aspirin every six hours, he could not be exposed to the flu (Reyes syndrome possibility). If he had contracted the flu, the aspirin treatment would have to be stopped and he would be at increased risk of aneurysm. Aspirin prevents aneurysm better than corticosteroids in this disease. We all had flu shots except DH (who has never had the flu EXCEPT when he got a flu shot). Our daycare provider quit because YDS was so fussy. DH revamped our business to work mostly at night so I could continue to work during the day. I was working as a school nurse at the time and I carried our insurance. I was grateful for insurance when I saw how much all the tests and medications cost, too.

All of this was brought to mind for me yesterday. I was filling out paperwork for a new dentist's office and one of the health questions was about a history of cardiac problems. I started to fill out no, and then realized that YDS does have a history of cardiac issues. I am so grateful that he healed without any long lasting effects. We have friends whose daughter had Kawasaki and had an aneurysm that burst. At the age of 3 she was a "heart attack" patient as burst aneurysms cause the heart to stop. Did I mention that Kawasaki occurs mostly in children 5 years of age and younger? It is extremely rare in adults, and the chances of getting it a second time are less than 1%.

Dear Lord,
Thank you for healing YDS so rapidly when he was sick. Thank you for providing us with the flexibility to be able to care for him as he healed. Thank you for reminding me of the fragility of human life by recalling a time when we saw it first hand. Please help us to decide what dental treatment options are best for YDS. It seems that Kawasaki Syndrome had no lasting damage in his heart, but it left a mark in his teeth. Please keep him as pain free as possible while we deal with the effects disease has had on his teeth. I praise you, Lord for the gift of healthy new teeth that are coming in now.


1 comment:

Mary B said...

I finally found your new blog, it looks great.