A week or so ago, a college friend and fellow mother, posted about her son's journey with Kawasaki Disease and how its "Awareness Day" was approaching so she was determined to educate others. I read her posts, scrolled through her pictures, and immediately thought that if I could help her spread the word about this disease, together we might be able to save another family from the confusion, pain, hospital stays, and the list goes on, that her and her family went through. When it comes to our kids, we moms and dads fight hard and that's exactly what Kristin and Sean Hand did for their perfect and super handsome baby boy!
Kawasaki Disease Awareness Day is January 26. You may be thinking what is Kawasaki Disease (KD)? My husband and I were thinking the same thing when our son was diagnosed with KD in May of 2015. He was 7 months old.
We want to share our son’s experience with KD in the hopes that it raises Awareness of this disease that is extremely scary and unknown by many, and very difficult to diagnose. I hope Eric’s story and pictures help you visualize some of the KD symptoms, however, presentations can vary.
It was Mother's Day weekend of 2015, our son Eric was just about 7 months old. He had a nasty GI bug/virus causing him to have diarrhea, vomiting, and fever. He was becoming more and more irritable and not sleeping through the night. His appetite kept declining and he looked pale. The course of this week was exhausting for Eric and he could not catch a break.
We called and visited the pediatrician’s office multiple times with questions and concerns throughout the week. They thought he had a GI virus and started him on Gerber Soothe probiotic drops and pedialyte. Eric’s lip swelling seemed to start Thursday night but it was very slight. His lips looked pink and so did his nose. The next morning his lips looked a little bigger so we thought maybe he was allergic to the red dye in the Tylenol he kept getting. Obviously we were not thinking about Kawasaki Disease, nor did we even know to look for it.
The pediatrician had me bring Eric into the office to see his lips. Within a matter of hours, his lips went from being a little swollen, to very swollen, cracked, bright red and peeling. His temperature was burning up, and he was inconsolable. Over the course of 5-7 days, he developed a fever >102, that never went away even with Tylenol. I was so scared, but was trying to remain calm for my baby. At the pediatrician, they tried to catheterize Eric for a urine sample but were unable to get urine because he was so dehydrated. At this point they told me to take him to the ER. I called my husband crying while he was at work.
I was a new mom, and in this moment, I was by myself, with my 7-month old son screaming in the back of my car because his body was inflamed from the inside out and no one knew it. My husband was able to leave work and meet me at the ER. Eric received IV fluid, Benadryl for a potential allergic reaction, Zofran for nausea, and antibiotics for ear infections. He started to calm down a little bit and was able to keep down 4 ounces of formula.
The ER doctor said that sometimes when a normal virus leaves the body it could cause hives and lip swelling in children. She also said that Eric had some herpes looking lesions in his mouth that he could have gotten just by kissing loved ones or from putting toys in his mouth at daycare. She said the inflammation in his ears was due to an infection, though we later found out it was the inflammation from the KD. She mentioned the possibility of Kawasaki Disease but did not officially diagnose Eric because he “only” had a fever for 4 days at this point. Officially, KD is associated with fever for 5 or more days.
When we got home, it was Friday evening around 8pm. As soon as we took Eric out of the car he vomited on the way into the house and had diarrhea. We gave him his antibiotics for ear infections, alternated Tylenol and Motrin, swabbed his inflamed peeling lips with Maalox, and prayed that he would get a little bit of relief and sleep.
As soon as he fell asleep, I started reading about Kawasaki Disease. The mom in me knew that Eric had KD, but I didn’t know what to do since we were just in the ER for 7 hours. Well, Eric woke up in the middle of the night with diarrhea, vomiting, fever, and his whole face was swollen. I called the on call nurse and she told me to bring him in at 8am. I called my mom at 5am and asked her to PLEASE come over. I was so terrified and just needed my mom close.
When my husband and I got Eric to the pediatrician’s office on Saturday morning, the doctor read the note from the ER the night before, and told us to take Eric to Children’s Hospital immediately for KD confirmation and treatment. We rushed to the hospital, hoping to get some answers, and some help for Eric.
After getting to the ER we had to retell Eric’s story to one doctor after another. The nurses had to stick another IV into our screaming baby to draw blood and give him more fluid. We did not get moved to a nursing floor for about 8 hours, and then had to wait about 4 more hours for him to get the needed treatment of IVIG and high dose aspirin. The medical team tried to delay the IVIG until the next morning because they said it was more of a “day shift” therapy. Well let me just say my Momma Bear Claws came out. I am an oncology nurse and have given IVIG to adults. In an emergent situation, it can be done. I had to advocate for my son and basically fight for them to start the treatment as soon as possible. And once they did start the IVIG, about an hour into the treatment, I could tell Eric’s little body was saying, “Thank You.” His body finally relaxed and he fell asleep in my arms.
After the first dose of IVIG, Eric’s fever finally went away. (Some children require a second treatment of IVIG if their fever persists.) He also started a regimen of high dose aspirin for its anti-inflammatory effect on the body. He had an echocardiogram of his heart and we are unbelievably blessed that his heart looked normal. Although not in the clear, this was a very good sign that we caught and treated the KD early enough. In total, we were at the hospital for 4 days.
When getting home from the hospital, we were all exhausted, but thanking a power higher than us that our baby boy was okay.
After we were discharged, I called and spoke to the nurse manager, and wrote a letter to the head of cardiology about our experience. I wanted the them to know that the attending physician taking care of Eric in the hospital told me that it would not matter if Eric got the IVIG that night or the next morning. Well, that is the furthest thing from the truth. The cardiologist agreed that every moment counts once you have a diagnosis of KD. Everything should be done safely, but as soon as possible, to relieve the body of dangerous and painful inflammation in the hopes of preventing heart damage.
For about three months after Eric’s diagnosis with KD, his lips continued to peel and shed. He slowly became less pale. The doctors told us this was the subacute phase of the disease. You can see his coloring and lips in the photos below (worse to better). He was diagnosed in May, and we had our healthy looking boy back by August.
We follow up with the cardiologist less frequently now since Eric’s repeat echocardiograms have all been normal. Since the long-term effects on the heart are unknown, Eric will need to have an exercise stress test to monitor his heart when he is around 10 years old.
It is still extremely hard and emotional for us to relive this experience. We are so blessed our little guy is happy and healthy today. Although this disease is rare, if people know the signs, serious heart damage can be prevented if treated early enough.
***Please do not confuse this with Coxsackie or Hand Foot and Mouth Disease. Many of our friends and family thought that he had Hand Foot and Mouth Disease because of the similar names (Coxsackie vs. Kawasaki) and symptoms.
For more information please visit the Kawasaki Disease Foundation http://www.kdfoundation.org.