Mason's Story
Today I’d like to share my 9 month old son’s story on Kawasaki disease.
Mason’s first symptom began Sunday December 20th, 2020. That night he had a random fever which we thought may have been teething related. Little did we know what the next couple days would bring.
Monday morning he woke up with a higher fever, I’d say around 103 and a cough. Through out the day his cough had worsened. He become super fussy and was crying. I contacted our pediatrician’s office and they said it is probably just a virus or COVID and to let it run it’s course. Later that night I thought he was struggling with breathing as his cough was worsening. It sounded absolutely horrible. So we brought him to our local ER. We weren’t there any longer than maybe 30mins and the doctor said he had croup. (Our first mid-diagnosis). He was given an oral steroid and we went home.
Tuesday morning my sons cough was worse. But not only was his cough worse. He had woken up with bloodshot red eyes, and the skin around his eyes was red. We made an in office appointment with a pediatrician and went in. They tested him for COVID, RSV and influenza A and B. All came back negative. The doctor came in and said that this was something called “Adenovirus”. And that it will run its course. So we went home. As the afternoon went on Mason’s fever kept climbing, Ibuprofen and Tylenol were only helping so much. His fever were running at 104. He wasn’t sleeping much, he was extremely fussy.
Wednesday... we barley had any sleep. We were having troubles keeping the fever down. I decided to bring him to a different ER. One that was connected to a children’s hospital. His fevers were now at 105. And only going away for 3 hours then spiking back up. When we got to the ER and to a room they had us get his clothes off. Where I noticed a rash on his arms. He was also congested. His cough was the same. They treated him with ibuprofen and have some fluids as he was no longer wanting to take formula. They also ran no tests. We were sent home with the knowledge of “it’s just a virus. Day 4 and still not an accurate answer.
Thursday, it’s my sons first Christmas Eve. Here we are back at the ER at 9:30am. My sons rash had spread, his cough was the same. His fevers were steadily at 105 almost 106. He looked terrible! My heart was breaking, I felt like I was failing my child. This ER doctor was the most determined I seen. He ran blood tests, urine cultures, strep test and more. He said to me “I am not letting you leave until we get an answer”. They had him on an IV with fluids. As he was barely eating/drinking his formula anymore, he hadn’t had a wet diaper in 8+hours. At 330pm, the doctor had requested a Pediatric doctor from Children’s hospital to come down and evaluate my son. That’s when they said “we think your son may have MIS-C or Kawasaki disease”... My heart dropped. I knew what MIS-C was, but never heard of Kawasaki. At 4pm the cardiologist came down to do an echo on my son to determine if we needed to be transferred to a hospital 2 hours away, or if we were ok to stay at the one we currently were at. Around 5:30pm I had found out from our nurse that we were staying at our current hospital. Which was a big relief! But it still didn’t answer what my son was battling.
Shortly after that the pediatric doctor came back in and said she is diagnosing my son with Kawasaki disease. Tears of fear and joy overcame me. My son was finally going to get help, and we finally had an answer. That night my son began the IVIG treatment for Kawasaki. And can I say how amazing it is at how soon you start seeing a change in your child? Only a few hours in and he was sleeping, he was happy, he was laughing. The second night we were there my child was almost completely back to himself, but unfortunately he was also spending his first Christmas at a hospital. They were still monitoring his heart closely as he was born with a MurMur. Even though his echo came back good we wanted to be careful and sure.
Mason was released that Saturday afternoon. I was thankful to be taking him home but also frightened. As we had no idea what the next couple weeks would be like. It has been over 2 weeks since he’s been home. And he’s recovering well. Occasionally he still has random bloodshot eyes. But hoping with time those will go away. He is currently on a daily aspirin and will continue to be so as the years go on. He will also continue seeing his cardiologist 2 times a year. One for KD and the other to monitor his pre-existing heart condition.
Thank you to all the doctors and nurses at Children’s Hospital Wisconsin.
Misdiagnosis?
1st time he was diagnosed with croup and was given and oral steroid. 2nd time he was diagnosed with Adenovirus and was given nothing. 3rd time he was diagnosed with just a virus.
Current Conditions
Mason still has the occasional peeling of the lips and skin. Day by day he gets more better. He also will be on aspirin for the rest of his life as well. unless the doctor tells us to stop. He already had a pre-existing heart condition before this. So we are doing it as an extra protective measure.