***Updated January 2019! See link at bottom of page for fundraising and this year’s 5K information!***
January 26 is Kawasaki Disease Awareness Day, and this one hits close to home. My daughter, Aria, was diagnosed with Kawasaki Disease in 2015, when she was just 5 months old. It was without a doubt the hardest thing I've ever had to go through, but we fought through it, and in attempt to spread awareness I am going to share our story of how Aria kicked Kawasaki Disease!
What is Kawasaki Disease? I know I had never heard of this before it came into our home...(except maybe from an episode of Grey's Anatomy). Kawasaki Disease is a serious illness characterized by inflammation of blood vessels throughout the body that primarily infects children and infants. As of right now, there are no scientific answers as to what causes Kawasaki Disease, only that some are of genetic disposition to get it, and the possibility of some infectious component to trigger it. It is more prevalent in children of Asian descent and more in boys than girls, neither of which apply to my daughter. It is estimated that more than 4,200 children are diagnosed with Kawasaki Disease each year. Without treatment, about 25% of children develop heart disease. Timely diagnosis is key to preventing any coronary complications.
Kawasaki Disease can be a bit tricky to diagnose because every case is different and there is no definitive test for it, doctors can only make a diagnosis based on a collection of symptoms including...
Fever that lasts for five or more days
Rash, often worse in the groin area
Red bloodshot eyes, without drainage or crusting
Bright red, swollen, cracked lips, "strawberry" tongue, which appears with shiny bright red spots after the top coating sloughs off
Swollen hands and feet and redness of the palms and soles of the feet
Swollen lymph nodes in the neck
In our case, diagnosis was even trickier because Aria was atypical, meaning she did not display all the symptoms. Another thing is that they must have the fever for 5 days in order to be diagnosed, so it was a long week of waiting and wondering for us.
Now let me begin our story! I'll take it day by day as the symptoms changed throughout the week. I should also note that not ALL rashes associated with Kawasaki Disease will look like the photos below. Symptoms can vary...this is just OUR story.
It was a Sunday (my children always seem to get sick on a Sunday), Aria woke up with a high fever. Before all this, I was a very laid back parent. I figured oh well, I'll just give her Tylenol and the fever will probably go back down, I can take her to the doctor tomorrow if she's not better! But it went on all day, her fever would spike right back up after the Tylenol wore off. She seemed very irritable and tired, and also sensitive to light.
Day 2-Monday-June 1
She woke up again with a high fever, still very irritable, lethargic, and just seemed in overall pain like she didn't want to move, so I called and made an appointment to see the doctor. Our regular doctor was only part-time so we saw another doctor in the clinic. After running all regular tests, she couldn't find a point of infection for the high fever, so she said it would be better for us to visit the Texas Children's ER. They could run more tests and have the results back right away to see if there was anything abnormal. So off we went. Luckily, it was a Monday morning and the emergency room was fairly open so we were able to get in right away. They ran some tests, and while we were waiting I noticed a rash developing on Aria's chest, back and groin. I showed the doctor and he was concerned it could be a sign of meningitis. I remember his exact words "if it turns out to be bacterial meningitis the results can be devastating." At that point I lost it...I laid there on the hospital bed with my sweet, 5 month old baby and cried, wondering if those would be some of my last moments with her. She was SO miserable and I felt SO helpless. They started her on an IV of antibiotics just to be on the safe side. Her veins were so tiny it was hard for the nurses to get the needle in. To test for meningitis they had to perform a spinal tap, which was another heartbreaking thing to watch. I almost had to leave the room but my husband and I decided to stay by her side.
The rest of the afternoon we waited for answers. My husband's parents met us to pick up our 2 year old, who had been with us the whole time. The meningitis tests came back negative so we were relieved, but still didn't know what was wrong. The doctors said it was probably just a virus and would need to go away on it's own, but her heart rate was very high so they kept us for observation until it went down.
He ordered an EKG and a chest scan, which both came back normal. Her heart rate would go down a little bit when she fell asleep but spike right back up when she moved or woke up. No one seemed to have any answers for us and eventually we just got tired, and tired of waiting, so we asked to go home. I wanted to be at home where I could better comfort my baby, so we left the hospital and agreed to follow up with our pediatrician the next day.
Day 3- Tuesday
Today our regular pediatrician, Dr. Katie Bruno, was in the office, so we were able to see her. She examined Aria and noticed that her throat was a little red, so the rash could have been a result of Scarlet Fever, caused by strep throat. They tested her and it came back negative, but since she had already had antibiotics at the hospital yesterday, it could be showing a false negative. Either that or just a weird virus. So we gave her another round of antibiotics in case it was Strep, hoped for the best, and went home ready to follow up the next day.
At this point the fever wasn't going down and the rash was getting worse and spreading. The doctor decided that if it were Strep that she would be getting better by now, not worse. Aria still seemed so miserable.
Standing in the exam room Dr. Bruno asked me how long her feet had been swollen. I looked down, confused, because I didn't notice it before. My husband said "yea I noticed that too." She informed us that there is something called Kawasaki Disease but it's extremely rare, and there is something called Atypical Kawasaki Disease which occurs more often in infants. She explained that in order to be diagnosed she would have to wait 5 days because one of the deciding factors is that the child must have a fever of 101 or higher for more than 5 days, but if it is treated within 10 days there are usually no long-term consequences. She ordered more blood work and said we could come back tomorrow to see another doctor in her office since she wouldn't be there. That night the rash spread to her face...
As I was giving Aria a bath that morning she seemed to be a bit less miserable, but that didn't last long. I was so exhausted from waking up with her throughout the night that week, from nursing non-stop, from all the doctor visits, from seeing my child in pain...I was hopeful that today would bring answers. When we arrived at the office we learned that some of her blood work was damaged along the way, so they took more and put a rush on it so we could wait there for the results.
Her body felt like it was on fire and she I could tell she was in so much pain. I felt so heartbroken and helpless that I couldn't do anything. I remember crying to the doctor “there has to be something more we can do…She’s MISERABLE.” We waited for hours in that office before we decided to just go home and wait there.
That evening, almost as soon as we got home, our doctor called us with the results and said that they were consistent with Kawasaki Disease. She said we could wait until the morning to avoid the emergency room wait or just head over now; she would make some calls and hope they will get us in quickly. I really didn't want to spend all night waiting in the ER, but at the same time I couldn't sit around and do nothing if they could treat her. So we headed back into town to Texas Children's. The ER was overflowing but we managed to find a seat on the floor while we waited. Luckily, they took her case as priority so we only had to wait a couple hours for an ER room. That night is all a blur to me now, a lot of doctors in and out, more tests, and a lot of questions. I was so relieved when they finally diagnosed Aria and said we could begin treatment. We moved to a room the next morning and were so ready to do something for our little girl. The results from her echocardiogram showed one dilated coronary artery, very minor...but still, I was terrified.
Once we got upstairs to our room we were ready to begin treatment right away. Kawasaki Disease is often treated with Intravenous Gamma Globulin (IVIg) and aspirin to treat the inflammation. Aria was also put on some sort of steroid. It started working right away and was getting better every hour. I could see her normal color coming back to her face and the rash slowly fading away! At one point, the IV fell out of her vein and her hand began to blow up like a balloon. She ended up being okay from that too, but just one more thing for me to worry about now.
The next day she was a bit more awake and even tried to play a little bit (she hadn’t engaged with anything all week)!... but still pretty legarthic.
We stayed in the hospital for 4 more days. Her echo now showed that the dilated coronary artery had gone back to normal, but she still needed aspirin every 8 hours for the next few months to prevent clotting, and the steroid for a few weeks as well.
Once we were home, Aria still was not 100% better. The second phase of Kawasaki Disease for us included peeling of the tips of her fingers and toes, joint pain and irritability, and possible abdominal pain. We didn't see her smile again for a few weeks and it seemed like it took forever for her to get her energy level up again after that. I'll never know exactly how was she feeling, but as her mom I could tell that she just didn't feel "good" for a long, long time. Luckily, she has the best big sister to entertain her and take care of her!
Since then I've joined parent groups on Facebook and spoken with others whose children have had Kawasaki Disease. I've read stories where children have long-term heart effects and some have even died because it wasn't diagnosed in time, or not at all. It is unbelievable how much pain these children have to endure, and the families who have been heartbroken from a lack of answers. This is the reason why I've decided to share our story, in hope to raise awareness for this awful disease, so no child should ever go undiagnosed.
I've spent so much time trying to link something to what caused this...was it something I did? somewhere we went? Something she ate?...but the truth is that there are no answers, not yet. It was a long and exhausting week and I cannot imagine how Aria must've felt through it all. What I do know is that I am incredibly grateful for Dr. Katie Bruno, our amazing pediatrician, catching this thing, and going above and beyond to ensure that we got the care we needed for our baby girl. Again, our story is just one of so many and each is different. I think we all came out a bit stronger in the end. She will still need to see a cardiologist once a year but other than that she should be able to live a normal, happy life. <3
If you're still reading this, you might be wondering if there's anything you can do to help...
You can make a donation to further research, spread awareness and help Kawasaki families in need.
You can participate in our Kickin’ Kawasaki 5k on October 26, 2019 in The Woodlands, TX:
(Go Team Aria!)
You can share this post.
On January 26, you can wear red, post a picture and hashtag #KawasakiDiseaseAwarenessDay (feel free to tag me!)