My Son's Story.

Personal stories of individuals and families affected by Kawasaki disease
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momofthree3708
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Joined: Tue Jan 06, 2015 1:23 pm

My Son's Story.

Post by momofthree3708 » Tue Jan 06, 2015 1:41 pm

I want my son's story to help others, and remind mothers out there that we should always trust our gut, no matter what the doctors say. This is a story of the time my son had Kawasaki Disease.

Friday - June 6, 2014.

My son had a very busy day full of playing and running around, so he fell asleep and had a late nap. When he woke up, I sat him down for some dinner. I noticed his left eye was puffy and red, not the eyeball itself, the lids were swollen and red. My first thought was maybe he was just tired. But then it began to get worse, quickly. It worked it's way to his other eye, and down the bridge of his nose, to his upper lip and chin. It was some sort of rash. It spread so quickly, it nearly happened before my eyes. He had no fever, no other symptoms. I wasn't sure what it was. I was concerned, so I called his pediatrician's office waited for the on call doctor to return my call, as it was after hours. The doctor told me that it was probably an allergic reaction to something he had come in contact with at some point during the day. I was skeptical. But as he was the doctor who had years of experience and schooling, and I, just a young mother of three, believed him. And I took his advce. I gave my son some benadryl and kept a close eye on him until bedtime.

Saturday - June 7, 2014

He woke up the next morning WORSE. I refused to believe this was an allergic reaction. The rash had spread down his body. It was on his neck, back and chest. And he had a fever of 103.2. I called the doctors and they got him right in. By the time we arrived, the rash had spread to his thighs. They assured me it was just a virus. They told me to give him benadryl for the rash, and motrin/tylenol for the fever. He'd be fine in a few days time. I brought him home, trusting that the doctor knew what he was talking about.

Monday - June 9, 2014

Monday came and he STILL consistantly had a fever over 103, at times up to 103.8 When on motrin or tylenol it would go down to 100-101 and he would be able to move. When his fever was high, we was lethargic, he wasn't eating. He acted as though we were breaking his bones every time we tried to touch him to pick him up. The rash had spread to every inch of his body, toes included. I brought him BACK to the pediatrician's office. This time they tested for strep on the chance he may have scarlet fever. No such luck, it came back negative, and again, they assured me, "It's just a virus, it will go away on it's own. His fever should break by Thursday (June 12th)" they told me. Over and over I heard it. But it felt like, "it's just a virus you stupid paranoid mom" "He's not gunna die, it's just a virus, what are you freaking out about?"
I don't like to run to the doctors for every cough or runny nose... but when my child has a high fever for days on end that just wont break, I get a little worried.. so yes, I will keep bringing him in until I get some real answers. Which unfortunaltely took much longer to get than it should have, and could have cost me my son's life.

Wednesday - June 11, 2014

Wednesday night, I just lost it. Looking at this poor, beautiful, innocent child, knowing he was in so much pain and was so weak, I couldn't take it anymore. I know they said to just wait it out one more day, and by Thursday his fever should be gone.. but I couldn't wait one more day.. I knew there was something more than just some stupid virus hurting my baby. So I brought him to the Emergency Room. After the ER doctor checked him out very thoroughly, he let me know he suspected my son had Kawasaki Disease. He told me it's a very dangerous and very rare condition, and although there is no diagnostic test for it, my son had most of the classic symptoms. He said it is important for this disease to be treated by the 10th day from when the illness began. We were already at day 6. He told me that I had a few choices: a) allow them to put my son in an ambulance and send him to Boston Children's Hospital where they have a team of Kawasaki specialists. b) drive him there myself or c) take him home and see how he did in the morning because there was a chance like his other doctors had said, that it was infact just a virus, and that he would wake up Thursday morning and be fever free and feeling better. And he also pointed out that from day 6 to day 7 there wasn't really any difference, as long as I didn't go past day 10.
Here's what happened.

Thursday - June 12, 2014

We brought him to Boston Children's Hospital. We waited for the following day because I had been in the emergency room with him the night before by myself, his father was at home with our other two children. We needed time to get all of our ducks in a row. We live in central Massachusetts... Boston Children's is an hour and a half drive for us. We needed to make sure we had child care set up for our other two children.
Here's the kicker. He woke up on Thursday, his fever had broken just as the doctors said it would. He appeared to be back to his normal, healthy self. He had an appetite.. he was in a good mood. I was thrilled. But everything about this Kawasaki Disease played over in my head, and I couldn't shake the feeling there was something really wrong even though my son was laughing, playing, and fever free. So we packed up, and headed to Boston. They determined he did infact have Kawasaki Disease. He was there for a week. The fever came back, and the doctors had a difficult time getting it back down. They had to pput ice packs all over him. He was treated with IVIG (intravenous immunoglobulin) which is atibodies from over a thousand blood donors. They don't know much about Kawasaki Disease, or why this treatment works, they just know it does.
The other part is this disease if not diagnosed and treated quickly can cause complications in the coronary arteries. He had echocardiagrams done to check his heart, and they found that one of his coronary arteries was slightly dialated, and he needed to be put on extremely high doses of tylenol to keep his heart safe from blood clots. Finding all of this out, knowing that if I had not trusted my gut, and brought him to the ER that night, he may not have been diagnosed and treated early enough, and could have lost his life due to heart complications. After spending an entire week in Boston, we had to go back once a week for echocardiagrams to make sure his arteries were not getting larger.

Today is Tuesday - January 6, 2014

My son is a happy, healthy, now three year old. There have been no lasting complications from Kawasaki Disease. I was angry for a long time that this wasn't caught the first, or second time I brought him to the doctor's office. I was angry because I was scared. I was scared because my three year old was on higher doses of heart medication than my 52 year old mother with a pacemaker. I was scared because my THREE year old had heart problems. I have never felt so afraid and lost in my life. He survived because I followed my heart, and I kept pushing for answers when the doctors were so sure that he was "fine".
I urge all mothers, all parents, to always trust your gut. Our instincts are usually right. Don't worry about seeming overprotective, or paranoid, or crazy, just always do what you feel is right. When it comes to your children, YOU are their best chance. Always listen to your heart and you will find the answers you need. Challenge the doctors, ask a lot of questions. Don't stop until you get answers. I pushed my instincts aside and listened to the doctors at first, and it put my son in danger. Always trust your gut.
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MorganKC8
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Joined: Sun Aug 30, 2015 12:00 am

Re: My Son's Story.

Post by MorganKC8 » Sat Oct 03, 2015 8:21 pm

Thank you for sharing. I'm so glad you trusted your gut and followed up with several appointments. My son is one month post-KD. We, too, had to go to the emergency room once and 4 separate doctor's appointments until Kawasaki was suspected. It's a frightening journey... and unbelievably stressful. You've done a great job with your son. Take care :)

Lyndahloo
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Joined: Tue Sep 06, 2016 1:47 pm

Re: My Son's Story.

Post by Lyndahloo » Tue Sep 20, 2016 2:27 am

Thank you for sharing your story. I was wondering how is your son now? Did his heart heal or is he still on the medications? My son was diagnosed 1 1/2 weeks ago and has 2 dilated arteries. We go for another echo 9/21 and I'm so nervous about it. I pray it's okay.

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