Cohen Elliott

"On Sunday 10/5/19, Cohen started to get a high fever and a rash. I did not think too much about it at first. I thought maybe a viral infection. He felt awful and did not sleep well that night at all. Monday morning, I took him to his pediatrician’s office, and she tested for Strep which was negative. She also said it was viral and we will give it a couple days to see if he gets better. Tuesday morning (10/8/2019), Cohen was miserable. He was covered with the rash all over his body, his eyeballs were red, his lips were red and cracked, his feet and hands were swollen, he was limping when he walked, and he had a fever of 104.3. I gave him Ibuprofen and called the nurse at his pediatrician’s office. She looked for openings in the office and there were not any. Around 2:30pm he seemed to be getting worse and I literally held him all day. He would not drink anything at all so I was really concerned about dehydration. We headed to Urgent Care and there is where I got the scary news. Dr. Mulder asked me if I had ever heard of Kawasaki Disease because he was concerned that Cohen had that. He looked him over and told me that I needed to get him to Riley ER and he would get them the info and let him know I was coming. He told me a little bit about it and I lost it, I started crying. He reassured me and told me Riley is where I needed to be as they will offer the best treatment for him.

“I got home around 5pm and we packed our bags. My husband, Cohen, and I headed to Riley ER. We got there around 7pm. The nurse took Cohen’s temperature and it was 105. They got us back immediately. They gave Cohen Ibuprofen right away and then they started an IV. They drew a lot of lab work and then started him on fluids because he was so dehydrated. They also did a chest x- ray. We saw 2 fellows and a doctor that explained what Kawasaki disease was to us and how there was no one test to diagnose it. They go by symptoms, length of fever, and if certain levels in the blood are showing inflammation. Cohen had all of the symptoms but one and this point, a fever that was about to be on day 4. We were admitted to the 9th floor around 2am. Wednesday (10/9/2019) was a very rough day. Cohen was miserable and his fever was holding strong. The Infectious Disease Team led by Dr. Christensen came in and met with us in the morning. They ordered an echocardiogram on Cohen and said that they were sure that everything matched the diagnosis we pretty much already knew. Cohen had Kawasaki disease and they needed to start treatment.

“Cohen’s echocardiogram was done a couple hours later, and he did not like that, but thankfully we got him to sleep so they could get clear photos of his heart. We found out a few hours later that his heart looked good and there were no issues! They did tell us that sometimes heart problems can arise afterwards so that we would need follow up echocardiograms done. At 8pm, they started him on aspirin and IVIG therapy which is intravenous immunoglobulin is a blood product prepared from the serum of between 1,000 and 15,000 donors per batch. They let us know that they were going to pretreat Cohen with Benadryl and they had all medicines pulled in case of a bad reaction. That scared me, but I knew we were in good hands.

“The IVIG made Cohen very irritable and his vitals had to be monitored every 30 minutes for the first 4 hours and then every 2 hours the rest of the treatment. We were up all night which we knew we would be. Cohen spiked another fever during the first two hours of treatment, but that was normal they told us. Thursday (10/10/19) was a great day! Cohen woke up late morning and his rash was almost all the way gone, his eyes were clearer and he looked great! We got to leave our floor and go to the Child Life Zone where there was a dog show and they had therapy dogs that the kids could dress up. Cohen had a blast down there. When we got back to our room, Cohen was ready to eat. We were happy to see his appetite back. We started to see our boy’s smile come back which made us so happy! Thursday late night at about 11pm, Cohen spiked a fever of 103.5. He could only have Tylenol and his fever was not budging. He could not have Ibuprofen due to being on aspirin. We ended up having to hold ice packs on his little body which was horrible. He just screamed and cried the whole time. At about 5am, the fever broke!

“Dr. Christensen came back in with his team and said that Cohen may have to have another round of treatment and that we had a decision to make whether or not Cohen would have IVIG again or be in a study where he would be entered in and the computer would choose which drug he got. The options were IVIG or Infliximab. Both treatments have shown to be great, but the study is trying to find out what is best for refractory Kawasaki disease. He said that Dr. Woods would be in to discuss the study with us. Cohen had visitors this day and played in the play room on our floor which he enjoyed a lot! Dr. Woods came in that evening and told us all about the study which we decided to go with. He then told us if Cohen’s fever stayed away through the night, then he would not need another treatment which made us so happy! Saturday (10/11/2019) Cohen went the rest of the time with NO fever!

“Dr. Christensen and his team came back in and said that the treatment worked and that Cohen would NOT need another treatment. He did advise us that Cohen will need to take aspirin for at least 6 weeks and come back in 6 weeks for a follow up apt with him and also an echocardiogram. We were ecstatic, but also still feel a little anxious about his heart and if future issues will arise. Kawasaki Disease is so unknown and is often misdiagnosed. The treatment window is 10 days and Cohen got treatment on day 4 which is amazing. We feel so blessed to have had doctors that were well educated with Kawasaki disease! Cohen will have his follow up in 6 weeks and then probably every year. We will know more in November.

“Cohen has no lasting effects of Kawasaki at least not at this point, but will have to have his heart monitored for life. Cohen is now pretty much back to his normal, happy, playful self and we so incredibly blessed! We want to bring awareness to Kawasaki as it is easily misdiagnosed and also support and fundraise for Riley. Riley is an AMAZING place and the stuff they do for the kids is wonderful. We had the best staff there from the nurses, doctors, volunteers, etc.”

- The Elliott Family