Kawasaki Disease & My Son
Kawasaki Disease is a rare illness affecting children under five years of age. The cause is still UNKNOWN. “The disorder was first described in 1967 by Tomisaku Kawasaki in Japan.” – Wikipedia.org
Day 1 (May 14)
He seemed feverish the night before so I gave him paracetamol. I was checking his temperature every 4 hours as it slowly soared from 37 to 38 to 39 degrees. I took notice of his runny nose and thought that maybe it’s “viral”, as most moms would assume. Through the course of the day, I was giving him paracetamol regularly (every 4 hours) and a sponge bath every now and then to reduce his fever. His temp never really goes down to 37 degrees.
Me and my husband were awakened in the middle of the night when he cried; his body burning with fever. It has been my SOP (or maternal instincts as others would call it) to take him to the hospital if fever persists for 24 hours, so I rushed him to the ER at 3AM.
He was diagnosed with UTI due to bacteria present in his urine. He had been drinking a lot of fruit juices and chocolate drinks for the past few days so I was convinced of the diagnosis. He was given antibiotics, Cefaclor to be exact, and I was asked to observe him for the next few days. We were allowed to go home and later during the night he was saying, “Mommy, is itchy!“, pointing to the area above his lips.
Day 2 (May 15)
Everything about him was normal, except for the recurring high fever. I waited for the antibiotic to work, usually a day or two after the initial treatment. That afternoon, I noticed rashes above his lips and behind his ears. They look more like long, reddish marks (“pantal” in Filipino). He was scratching them and I had to assume that it’s allergy. He’s never had any allergic reactions to food and medications before, including paracetamol, so I thought that maybe it’s the antibiotic. Later that night, he was rubbing his eyes and they appeared a bit swollen.
Day 3 (May 16)
He was okay the whole morning but I had to take him again to the hospital because I was worried of the skin rashes. I was hoping that it’s not Dengue fever or Measles. Urine and blood tests were performed – routine urinalysis, urine culture, and complete blood count or CBC. The doctors said that he might be hypersensitive to the antibiotic, since they appeared shortly after I gave him the medicine. They replaced it with another antibiotic under a different family and gave him antihistamine for the allergy. So we went home but his persistent fever still bothered me.
Day 4 (May 17)
Rashes above his lips and behind his ears cleared a bit but his eyes became swollen, as well as his fingers and toes. His rashes would fade each time he’s on antihistamine but after a couple of hours they would re-appear. He also lost his appetite and would often lie down. It was late in the afternoon that I noticed his short, quick coughs (as if clearing his throat) and it seemed to me that he’s having difficulty breathing. He vomited twice and was getting weaker and weaker each day.
He had a massage later in the evening to check for sprains, and we were told that his lymph nodes or “kulani” behind the ears were enlarged. We were at the hospital for the third time and the doctors gave him Prednisone and Iterax for the rashes and sore throat. He had to stop taking the new antibiotic because he was [unfortunately] allergic to it, too.
Day 5 (May 18)
My son’s pedia attended a medical conference so we had him checked up by a substitute doctor. Just one look and she knew he had to be admitted right away.
Pedia residents were checking on him regularly and they have already informed his pedia about his situation. After a day of answering questions and relaying the events during the past few days, a doctor calmly informed us that they’re looking into three possibilities: Dengue, Measles, and Kawasaki Disease (KD).
“Kawasaki what?” I was at a loss and my mind couldn’t comprehend what was happening. My husband told me that his officemate’s daughter was diagnosed with the same disease before. I googled it right away – Wikipedia, medical websites, and “The Kawasaki Disease Forum…. Losing my 2wks old baby” – Oh crap. My heart sank a little.
I read the mother’s story about how KD took her 2-week old daughter away from her, and a few unfortunate accounts of mothers with children affected by the disease . I managed to choke back my tears before going out of the room. Images of events for the past 2 years with my son started crowding in on my mind. How I spent 9 months talking to him inside my tummy. How I’ve held him close to my heart when he was still a baby. How he made us all crazy excited with every milestone he reached. I love my son so much, and the thought of losing him was heartwrenching.
That day was our 3rd Wedding Anniversary.
Day 6 (May 19)
Zaiel was referred to an Infectious Disease (ID) Specialist and she confirmed that he has Kawasaki Disease basing upon his appearance and lab results. His fever was still on 38 – 39 degrees. Rashes became evident on his legs, arms, and torso. His eyes were severely swollen and red. His tongue was also swollen, with small bumps, and they call it “strawberry tongue“. Other symptoms include sore throat, shortness of breath, fatigue, and irritability.
As explained to me by the doctors, KD mainly affects the blood vessels, including coronary arteries. Blood vessels (“mga ugat“) throughout the body get inflamed (“namamaga“), and the most serious that could happen is on the heart — coronary artery aneurysm. If left untreated after 10 days, children may have a higher risk to develop heart problems. That small window period is critical and I was thankful that he’s only on his 6th day.
My family was devastated with the news. And somehow it helped that my friends knew about my son’s illness because I was comforted with their words.
KD is believed to be an autoimmune disease and cannot be cured by antibiotics. My son isn’t allergic at all to the antibiotics given to him before, it’s just that the disease is highly reactive to it, hence the skin rashes. The only treatment advised by the doctors is the IVIG, and he started his first vial right away.
Intravenous Immunoglobulin (IVIG) contains antibodies that help boost the immune system. One vial costs around PhP 12,000 – PhP 15,000 and he needed 9 vials to complete the treatment for 12 hours. The number of vials depends on the child’s age and weight. Yes, I know, the medicine is too darn expensive. Our wallets couldn’t agree more. My tita, who’s a nurse in the US, told me that over a thousand blood donors are needed to fill up just one bottle. I was later told that my grandfather was also given the same treatment before.
Day 7 (May 20)
After just one vial, his temp slowly drops and he was able to smile again. He shouted, “Chicken!” and we were glad that he’s getting better. His rashes began to fade and we were all relieved that he was responding well to the treatment. Another symptom that came too late is dry, cracked lips. He was asking for the petroleum jelly to soothe his lips the whole time.
An echocardiogram or 2d echo was performed twice and results appeared to be normal (nothing serious), except for that little bulge somewhere in the heart, which is “normal” to all KD victims. My prayers were answered and I couldn’t ask for anything more.
1 Week After
The aftermath was the hardest. After we were discharged from the hospital, his extreme irritability left me powerless. Gone was the sweet little boy. I just kept on thinking that it won’t last long and that I need to have enough patience to help him recover. The helper left for a month-long vacation so all the house chores was on me. And just when we thought it’s all over, he was admitted again because his rashes came back. “Hypersensitivity to aspirin” was the diagnosis and they had to lower the dosage. I felt so overburdened.
The skin on his fingers peeled off and his irritability subsided. He was having regular appointments with 3 doctors (his Pediatrician, ID Specialist, and Cardiologist) and was still on aspirin. Aspirin helps prevent further heart complications.
He wasn’t allowed to engage in regular activities yet – running around the house and getting tired.
Aug 3, 2012
He underwent an echocardiogram for the third time. Results were normal so the doctor instructed to stop his aspirin. 🙂
Thank you my family and friends for the love and support, and thank you doctors and nurses of Capitol Medical Center for making the burden easier to bear.
To mothers around the world who have/had a child with Kawasaki Disease, I extend my deepest sympathy and love.