“Kawasaki”. When I heard the word come out of a doctor’s mouth I couldn’t have been more confused. Wasn’t this some type of motorcycle? Why was he using it to describe my 3 year-old daughter’s condition? I had never in my life heard of “Kawasaki Disease” (or KD), but you better believe I spent the next few days consulting “Doctor Google”. I looked up article after article. I could barely sleep because I was looking up every symptom that she had and I was trying my best to figure it all out. So how did I get to this point? Allow me to start at the beginning.
On Tuesday, July 10th, our 3 year old, Jillian, developed a fever. She was lethargic as often happens with fevers and we assumed that she was coming down with some kind of virus. We have 4 other kids besides her so we just carried on with our day and doted on her since she clearly wasn’t feeling well.
On Wednesday evening, I stayed home from church with Jillian. After a quick trip outside to tend to something, we both came back inside and sat on the couch to watch a show. It seemed like before my very eyes that her back developed these awful bumps in a cluster. I was hoping that she had not been bitten by anything during the couple of minutes we had walked outside. I continued to monitor her that evening and the next morning she thankfully seemed better. She still felt a little warm, but we had planned a trip to Galveston (over an hour away) as a rare time with just our family, so we decided to carry on with that plan. We all had a fun couple of hours at the batting cages and then at one of our favorite restaurants, but I noticed Jillian getting more and more lethargic. Though she had only felt mildly warm that morning, she felt blazing hot by early afternoon. I ran into a Walgreens to grab a thermometer and a fever reducer. In the mean time, we offered her a shaved ice treat to hopefully cool her off but she emphatically refused it. You know a kid truly isn’t feeling well when they refuse something sweet. After she refused this, I took her temp. My husband and I were immediately worried when it showed her temp at 105.7. Despite having 5 kids and being a mom for over 9 years, I had never seen such a high temp and I was starting to feel a little panicky. We gave her some Children’s fever reducer and she almost immediately threw it up. It was then that we decided to take her to the ER at UTMB Galveston. The bumps that had begun on her back had now spread to more places over her body. It was time to get a professional opinion.
We took her to the ER at UTMB and they gave her a steroid, some Benadryl, checked her urine and released us. Though the nurses were amazing, the doctor did not impress me. I had to remind him to check her ears and throat and felt that we were kind of forgotten. However, the steroid and Benadryl seemed to help the bumps go down and her fever was down. They diagnosed her with a small ear infection and a small UTI and gave us a prescription for an antibiotic. We got home after midnight and we were all exhausted.
The next day was Friday. Jillian was great at the beginning of the day, but then got worse throughout the day, just as had happened the day prior. Her bumps became so much worse and began to spread all over. She was itching and crying. It almost looked like a chemical burn of some sort because how inflamed it appeared. The rash would change positions and would get better or worse. She was completely miserable and cried most of the time because of pain and discomfort. I began to rack my brain about anything she could’ve ingested accidentally or anything she had eaten that was different than normal. I couldn’t come up with any great ideas. After hours in the ER in Galveston, the last thing I wanted to do was spend more time in another ER only to be told the same thing. However, Jillian was miserable for hours on Friday night. She would fall asleep for a few minutes, only to wake up and scream and cry in pain.
My husband got up with her around 4 AM (Saturday) and took her to our local ER in Lake Jackson, Texas. I stayed home with the other kids and stayed close to my phone so I could answer any questions. Around 8 AM, I got one of the scariest texts I had ever received. Josh told me that they were transporting her via ambulance to Texas Children’s in Houston. I quickly grabbed some necessary items. My sweet neighbor as well as my dear church friend immediately came to my aid to help with our other kids and to get me to where I needed to go. Meanwhile, as Josh was with Jillian in the ambulance, she puked all over the EMT (they are an under-thanked people, let me tell ya). I felt so badly for Josh as well. He sent me a picture of her that made my heart break. She was asleep in the ambulance and she looked so awful as the rash had made its way all over her face.
The drive from Lake Jackson to Houston never felt so long for either of us. He and Jillian had gone ahead in the ambulance and I drove our van up a bit later. I finally made it to the hospital. Jillian was incredibly irritable, crying, screaming, scratching…she was completely miserable. There’s no other way to describe it. Our hearts were breaking. They gave her some Atarax (an antihistamine) and admitted her pretty quickly and that’s when I heard the first guess at a diagnosis – Kawasaki Disease. In the mean time, I had posted a picture of her on FB. This resulted in parent after parent and even people with medical knowledge giving me ideas for a diagnosis based on their own studies and experiences. I looked up every possible idea based on what doctors were saying, on what friends were saying and based on the symptoms I had seen in her all week. I couldn’t put my phone down. I wanted to know every possible idea. Once they threw out the idea of Kawasaki Disease, I wanted to know everything about that as well.
Turns out, KD is also known as mucocutaneous lymph node syndrome. It’s a disease in which blood vessels throughout the body become inflamed. There is not a lot known about how it comes about, it’s non-contagious and it is listed as “rare”. Supposedly, 20,000 people or less develop this in the United States annually. (According to Google and doctors, it’s most common in Asian boys and it’s most common with kids under the age of five. However, I read of cases frequently where this is not the case. I think as more research is done, these claims may even be amended.) It is most often treated with IVIG (Intravenous Immunoglobulin), aspirin and follow-up echocardiograms. Kawasaki’s can bring about life-long heart problems, especially if it’s not diagnosed and treated preferably within the first 7 days of onset. As I continued to read, there were several things that didn’t seem to add up in regards to a KD diagnosis. After receiving a couple of rounds of Atarax, Jillian became a completely different child. She was happy, she stopped itching and she was gaining her energy back.
AFTER ATARAX (Swollen, but fever and rash had almost vanished)
This confused all of us, including the doctors who thought she had KD. Her blood levels did not show that an allergic reaction was present and yet an antihistamine had made her feel so much better. Also, there were some symptoms that were not present that should be with Kawasaki – she had no red tongue and she did not have peeling skin.
Over the next few days, I talked with many, many doctors. I presented lots of alternative ideas to them just to make sure every basis was covered. My husband and I are my child’s biggest advocates. I realized this even more as certain doctors disagreed with one another on the diagnosis and also after my experience at UTMB. We had come from a diagnosis of a UTI and ear infection to Kawasaki disease. This was such a huge leap. One doctor had prescribed her an antibiotic and one doctor had told me to discontinue the antibiotic. I wanted to be sure that Jillian was not going to again be receiving treatment for something that she did not have. Despite my hesitations, Jillian’s symptoms and blood work markers were enough to diagnose her with “Incomplete Kawasaki Disease” or “Atypical Kawasaki Disease”. Basically, she had several symptoms but not all of the markers needed. Thankfully, we were within a needed 10-day timeframe and the doctors decided to start her right away with IVIG. The drip was slow and took around 10-12 hours. Keeping a 3 year old attached to an IV for that long was no small task, but she did so great (thank goodness for those latex gloves that make great balloons! J). She did start to detest seeing any doctors in her room, though. She was afraid they were going to draw more blood and she was not a fan. 🙂 Sometimes we had a team of 10 or so doctors all crowded into our room. Jillian did not like that to say the least, but she did love several nurses. Her mood and behavior was pretty up and down. Turns out that irritability is a symptom of both Kawasaki and IVIG. Sunday night, her IVIG finished. They also began her on high doses of aspirin, which frankly I was not a fan of, but KD is one of the only reasons why that much aspirin would be necessary with a young child.
Monday evening, I took her downstairs to get an ice cream cone at the McDonald’s that is inside of Texas Children’s. We saw the train display and she wanted me to take picture after picture of her. I loved how happy she was acting. Well…until she saw the automatic doors leading to the outside world. Then she plopped herself down on the ground right in front of the doors and acted like she wasn’t going to stand up until we went home. Poor kid. She was not alone in her sentiments. I was also weary from almost a week of dealing with a sick baby girl combined with lots and lots of nightly hospital interruptions that kept Jillian and I from getting a good night’s sleep. I picked Jillian up, we explored the hospital a little bit more and then I gave her a bath. Just when I thought we would have the best night yet at the hospital, she puked. An hour later, she puked again. By this point, she was crying and I was crying. My husband had gone home earlier that day to be with our other kids and I felt like Jillian and I would never be able to go home. I was so terrified that her throwing up would lengthen our stay and that it could even imply something else more serious. However, turns out that what she was experiencing is a side effect of IVIG. I’m sure the high doses of aspirin didn’t help either.
The next day (Tuesday – now a week since she had first developed symptoms), she was given an echocardiogram. Her heart looked great and we were sent home later that day. It was so cool to have all of our family back together again. I know her siblings missed her – especially her twin, Jinger. 🙂 Our orders from the hospital consisted of giving her aspirin every day. I had the biggest problem with this part, because I still wondered if perhaps she had only had a virus. If what she had was a virus and we gave her aspirin, her chances of developing Reye’s Syndrome (which is incredibly serious) are very high. Read up a little on this syndrome and you’ll know why I was so concerned. Since we were released from the hospital, Jillian has had two more echocardiograms and praise the Lord alone, both have shown a healthy heart. We are now about 6 weeks post diagnosis and she is doing great. She has some behavioral issues at times and complains a lot about her leg hurting (both things that I’ve heard repeatedly from other KD parents about their kids), but compared to what she has been through prior to this, I couldn’t be happier.
I’ve joined a FB page that has lots and lots of people who have been diagnosed with KD (Kawasaki Disease) and also lots and lots of parents whose children have been diagnosed with KD. Sadly, not everyone else has had the same positive outcome. There are so many people who now have lifelong heart problems because their KD was not properly diagnosed or diagnosed in time. Many of them went back and forth between hospitals before receiving the correct attention or diagnosis. Some have even lost children to this mysterious disease. One parent in particular attributes her child’s KD to a vaccine that he had received as it is listed as a side effect. Though KD is very mysterious and is listed as rare, I was told numerous times by doctors and nurses at Texas Children’s in Houston that they see Kawasaki’s disease on a weekly basis. Because so many people have not even heard of this disease, I thought it was incredibly important that I show pictures of how Jillian’s rash progressed. Apparently, there was an episode of Grey’s Anatomy that talked about KD, but for the most part, so many doctors and parents do not recognize these symptoms, simply because KD is not a well-known disease.
If your child has a high fever, rash, swollen hands, feet or eyelids, red eyes and tongue, immediately seek medical attention and express your concerns that it could be KD. Though there is no specific test for this disease, blood work markers and symptoms can come together to make a diagnosis and IVIG can be given to prevent lifelong heart problems or even death in rare cases. Many children will completely get over the side effects of this disease, but early prevention can help so much. Don’t be afraid to be your child’s advocate. Don’t be afraid to second-guess a doctor. Though we are so incredibly thankful for them, they all can disagree and they can’t all be right. It’s our job as parents to know our kids, to know their symptoms and to study out every possibility and make sure that our precious loved ones receive the proper care.
I would like to end with a big, gigantic “THANK YOU”! THANK YOU so much to my amazing husband, family and church family who stepped up to fill needs. I immediately had food taken over to my kids, babysitters step up to help, cards sent, a Go-Fund-Me set-up by a friend to help with medical bills, etc. and encouraging messages flooding my phone and FB page. I had people all over the world praying for Jillian and it blew my mind. I fully recognize that not everyone has this kind of support system and I can’t begin to express how blessed I feel. Thank you to our local LJ Hospital that recognized the possibility of KD and did the right thing by sending her on to Houston. Thank you to the team of doctors and nurses at Texas Children’s that invested in my child. My Savior and Creator deserves the most thanks. He gave me peace when I wanted to freak out. He was with us every step of the way. KD did not win in our case. Please pray for those who have not had this outcome and please be on the look out for these signs and symptoms.
2 thoughts on “Kawasaki Disease – My 3 Year Old’s Story”
I am glad to see that she is recovering well and seems to be in a much better spot than before. I am with the KD Foundation, Bridges Support Group, we are tasked and our mission is provide support, education and raise funding for KD Research. If I can help, please let me know and PMs are welcome. I am also a very long term KD Survivor @ 67, I suffered it @ 7, well before it was a described illness, so I received no diagnosis or treatment and almost died. Recovering slowly, it would once again attack me when I was 33 with a heart attack that again, almost killed me. That’s when we discovered the many arterial abnormalities that resulted from KD.
Since then, there’re still many of the Big Questions that remain to be answered.
One recent breakthrough that will help to reduce the many misdiagnosis for KD or failure to diagnose is a reliable definitive test: https://health.ucsd.edu/…/2018-08-06-researchers…, Other developments hopefully will come sooner than later.
In September, there will be an annual Parent’s KD Symposium held at UCSD. I urge anyone who can make it to go because this year, Professor Burns will be presenting some of the latest findings discussed at this past June’s International KD Symposium held in Yokohama, Japan. If unable to attend, it will be live streamed on Facebook: https://medschool.ucsd.edu/…/KD%20symposium%20flyer… ; https://medschool.ucsd.edu/…/parents/Pages/Symposium.aspx; https://www.mapado.com/…/kawasaki-disease-parent…; 2017 Parents’ Day SymposiumL https://www.youtube.com/watch?v=IZF1SgcoqYQ
Some resources all can access when assistance is needed: http://kdfoundation.org/; http://kdfoundation.org/kd-resource-center/; http://kdfoundation.org/kd-researchers/; https://www.eventbrite.com/…/to-save-a-childs-heart. KD Fund raising events: https://www.facebook.com/KDFGala/;
I urge all of you to remind the hospitals and doctors who diagnosed, treated and continue to manage the care of your children to report the KD illness to the CDC as recommended, so that we have accurate data about the incidence of KD in this country. We need the data in order to receive government and public funding for research to solve this mystery and others that are related to KD:
Fund raising events: https://www.facebook.com/KDFGala/; I urge all of you to remind the hospitals and doctors who diagnosed, treated and continue to manage the care of your children to report the KD illness to the CDC as recommended, so that we have accurate data about the incidence of KD in this country. We need the data in order to receive government and public funding for research to solve this mystery and others that are related to KD: https://www.cdc.gov/kawasaki/about.html
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