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Tyler Sucato

Tyler Sucato
Phoenix, AZ United States
Stuff About Me:

Tyler was diagnosed with KD on day 5 June 12, 2013. Did it start 5 days before that I’m not sure. Ty has always been a hyper child. Even when I was pregnant with him he has always been in constant motion.  In mid-May our family got a stomach virus. All 4 of us were sick for at least 12 hours. My husband didn’t bounce back for about 3 days after. It seemed to hit my Husband and my son the worse. My daughter and I only had it 8-12 hours. Ty’s teacher came to me just a couple of days before we all got sick and said she had notice that he had been going to the bathroom a lot in the last 2 days and wanted me to be aware of it. I had asked him why and he told me his penis hurt when he urinated. Off to the Dr. we went. When we got there he told me that he had lied about it hurting, not knowing what the truth was I still took him in and they tested for a UTI. That came back clear. From mid-May to June 1st he had 4-5 accidents which are completely unlike him. We had had some family in town so I had chalked it up to just being excited to be around cousins, or sometimes little boys are just so focused on playing they forget to go to the bathroom. Does any of that have to do with Kawasaki’s, I have no idea. Fast forward the first week in June. Ty had been complaining of stomach pains. With the family we had in town and some traveling we did I assumed it was due to diet and gave him gas drops. He started summer camp that week and one afternoon I picked him up and when he took his swim shirt off I thought I saw what looked like a rash going away. I assumed that it was the heat (we live in Arizona and temps were already at 110) and being outdoors. By the time we got home the rash was gone. On that Friday June 7th my sister in law & I had taken our kids to a waterpark. Before we left Ty laid down on my bedroom floor and said his stomach hurt. I told him that if hurt that bad then we couldn’t go to the water park. I should have known then something was really going on because my son does not just lie down. He immediately got up and never said another word about the pain the rest of the day. After the waterpark we met up with my husband for dinner. While at dinner Ty complained of a headache. I could tell it was really bothering him. Next door was a pharmacy and I went over and got him some chewable ibuprofen. His head was not getting any better so we boxed up our food and took him home and put him to bed. Around 11:30 that night he started vomiting and did 3 more times till the morning. Around 7 am I saw a rash all over his belly, legs, back and face. His fever was at 102. I took him to the pediatrician and she diagnosed him with Hand Foot and Mouth Disease. She said that we caught it before the pal-ups formed on his palms, mouth and feet. She also did a Strep test and it was negative. I continued the ibuprofen but his fever did not go down. The next morning his fever was at 103.6 and his tongue was white. I called the emergency line for the pediatrician and the nurse felt like it was Scarlett Fever. She told me to continue doing what I was doing and that it could take 3-5 days for the fever to break. So that’s what I did. I continued and was getting nowhere. On Monday Ty was extremely cranky and just laid on the couch moaning in pain from his abdomen. His lips seemed to be really chapped. I helped him up to the bathroom and when he urinated it looked orange so off we went to the ER. They started with fluid, blood work, then a urine sample and then X-Rays. The nurses gave him Tylenol and his fever went down to 99. The Dr. came in and told me he wanted him checked for Appendicitis. Then the ultra sound and the CT scan. Both of those came back negative for the Appendicitis but he did notice that there was fluid around his intestines and that they were inflamed. So with some rest, relaxation and a bland diet he should be ok so back home we went. The next morning the fever was back at 102, then came uncontrollable diarrhea and then the vomiting. Back to the ER we went.

They immediately hooked him up to an IV and told us they were going to admit him. Appendicitis was back on the table as a possibility. As we were waiting for transport to take him to his room, I checked Facebook and my girlfriend had posted have them check for Kawasaki’s and Google it. Next to me was my husband and I said Google Kawasaki. He read down the list and even though Ty didn’t have all those symptoms I knew in my heart this was what we were dealing with. As soon as we go to his room the Dr. came in and I said I wanted him checked for it. Immediately he gave me 100 reasons why it wasn’t Kawasaki’s. 2 hours later another Dr. came in and said you may be right but they had to rule out everything else first. His lips still were very chapped and Chap Stick was not working. About that time the swelling in his hands and feet started and his eyes became red. The doctor ordered another ultra sound this time of his liver and gallbladder. When the results came back the levels were elevated, I don’t remember as to what the #’s were or the details of it all. That night we stayed in the hospital. By the next morning the KD eyes set in. I remember reading another child’s story and the mother referring to how heartbreaking the KD eyes are. She was so right. It was like all the life that was once there was gone from him. His eyes were just dark and unrecognizable and blank.  Also he’s lymphoid in the back of his neck were now very swollen and his lips were cracking because they were so dry. My husband called me that morning to tell me something funny was going on with his face. He said he couldn’t move the right side of it and when he went to the Dr. they said he developed a cause of Bells Palsy. The doctors think there might be a link that triggered the Kawasaki and the Bells Palsy but there is just no way of knowing. Mid-morning I met the Infectious Disease Doctor who tells me that he’s pretty sure this is Kawasaki’s, and it’s time to treat it with the IVIG and 647mg of aspirin since we are at day 5 of the fever. So that’s what we did. The IVIG lasted 12 hours and we did 48 hours or the aspirin. His fever broke just a couple hours after starting the IVIG! The cheer in the room when the nurse said that it was 98.6! It was like hearing my baby crying for the first time! We were all so excited! We were fever free for 21 hours. Then the fever came back and then he lost movement in his neck. That was a tough, tough, tough night. He was in excruciating pain, by this time he wanted nothing to do with any more medicine. He was done with having the IV in him. Every a nurse walked into the room she had to show her hands to let him know that she didn’t have any needles. In order to get him to take the aspirin, we had to use applesauce, chocolate pudding, whip cream and finally crushed it up in orange juice. Because of the loss of movement in his neck they wanted him checked for viral and bacterial meningitis. Everything looked clear and they said that he had Aseptic Meningitis that could have been caused by the IVIG and they wanted to do it again along with 567mg of aspirin again for 48 hours. So that’s what we did. Then they did the Echocardiogram and everything looked ok. His fever broke but he had a lot of pain in his belly from the aspirin, his back and his head because of the Spinal. All I could do was just lie with him and massage him. The pain came in waves and the poor little guy would just cry and cry. It was heart breaking. He finally agreed to let them give him some pain medication. We had to keep his room dark because the light really hurt his eyes and he developed photophobia. I kept the TV and iPad off for 2 days because I figured the bright colors of the cartoons and games helped contribute to his pain Once that got turned off and stayed off he did much better. . He proved me right when I had a weak moment and let him get on the iPad to play a game. After 3 minutes he handed it back to me and told me I was right it wasn’t a good idea. I also only allowed 1 family member in the room at a time with him, the less distraction the better. We were released 7 days after being admitted.

We brought him home and he was doing great for the 1st 2 days. And then the pain came back and then he lost movement again in his neck. So back we went to the ER and of course they admitted us. The Dr. thought it was the aseptic meningitis flared up, but she wanted to do another spinal tap just to make sure that a viral or bacterial meningitis hadn’t formed. Luckily it hadn’t. So with some pain medicine, muscle relaxers and some physical therapy, we left 3 days later. He continues to have red eyes on and off and is still sensitive to light. We had the peeling of his hands feet and his knees. For 2 weeks we stayed home. No play dates and I’ve kept errands to a minimum. He hasn’t had a whole lot of energy. It’ll come in waves but it doesn’t last long. Each day he regains more and more. We had some good days and we had some bad days. His pediatrician felt like he possibly got an infection in his lymphoid and put him on an antibiotic. It really seemed to help. It brought the swelling down and he has regained most of his neck movement. I also had a massage therapist come and massage his neck and back and that helped. However he developed a rash 24 hours after starting it and the rash lasted for a week.

Our first cardiologist appointment was July 8th. The Dr. said that his heart looks perfectly normal. We will continue the aspirin until the end of the month and then follow up in Mid-August. If all goes well at that appointment then we will see him again in 6 months, then a year.



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Tyler Sucato's Fundraisers

Kawasaki Disease Challenge

Kawasaki Disease Challenge

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