Kawasaki Disease – It’s Not About Power Sports, Or Is It?

Honda, Suzuki, Kawasaki – these were all names I was familiar with growing up. My dad had several motorcycles, and I enjoyed many rides sitting behind him, holding on tightly through the curvy, mountain roads when I was a kid. I loved motorcycles then, and I dare say I still would if I had the opportunity to ride them now. Alas, my husband thinks I’m only kidding when I say things like, “Let’s buy a Harley and take off cross-country!” I’m not. I’d do it it in a second. Adventure, motorcycles and me – sounds like a great combo!

However, after an experience we had a few years ago, I can tell you that one of these aforementioned motorsports companies simply has the wrong name if they want my business.  It’s not their fault, and I’m sure their company and their brand is fantastic! It’s just that I don’t like the word because it brings up memories of an adventure of another kind – one our family would rather not relive.

When my youngest son was just about to turn two years old, only four years ago, we found out more than we ever wanted to know about Kawasaki – but it wasn’t the motorcycles we were researching this time, it was the disease.

This was a scary time in our lives, but thankfully, there was a happy ending (more about our experience as you read on). However, today, we go back to the pediatric cardiologist, several years after this ordeal, for William to have a follow-up echocardiogram. The purpose of this is to make sure that there is still no evidence of heart disease or problems, so that he can begin participating in all of the childhood sports he desires – without restriction. It is not a required test, but one we have decided to have done again.  It is “recommended” for his safety and health, and our own peace of mind.

Before I explain about Kawasaki Disease and our experience with it, I would ask you to pray for Will today, if you feel led – that everything will be clear! Thank you, friends!

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Kawasaki Disease, as defined by the Kawasaki Disease Foundation (www.kdfoundation.org) : 
Kawasaki disease (KD), also known as Kawasaki syndrome, is a serious illness characterized by inflammation of blood vessels throughout the body that primarily affects young children and infants. Kawasaki disease is the leading cause of acquired heart disease in children. Although about 80 percent of patients are under five years of age, older children and teenagers can also get KD, but this is uncommon. KD is more common in boys than girls, and the majority of cases are diagnosed in the winter and early spring. It is not contagious.

The disease is named after Tomisaku Kawasaki, a Japanese pediatrician who first described the illness in the medical literature in 1967. Although it is more prevalent among children of Asian and Pacific Island descent, KD affects people of all racial and ethnic groups. It is estimated that more than 4,200 children are diagnosed with Kawasaki Disease in the U.S. each year. The cause of KD is unknown, although an agent, like a virus, is suspected. There is no currently accepted scientific evidence that KD is caused by carpet cleaning or chemical exposure. (this was suspected years ago)

Kawasaki Disease is characterized by an inflammation of the blood vessels throughout the body. There is no specific test for KD; doctors make a clinical diagnosis based on a collection of symptoms and physical findings. Early symptoms of KD include: 
•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
Understandably, children with these symptoms are extremely uncomfortable and irritable. Any parent whose child has persistent fever and any of these symptoms should take him or her to the doctor immediately.

Without treatment, about 25% of children develop heart disease involving the coronary arteries. Timely diagnosis and treatment (which usually includes intravenous gamma globulin) is highly effective in preventing coronary complications. Doctors continue to study the long-term outcome of children who do not appear to have coronary involvement. Other kinds of longer-term consequences (e.g., non-coronary) are extremely rare. There is no evidence that links KD with autism or a seizure disorder. A very small number of KD children might have a seizure in the early acute stage of KD when there are very high fevers, but there is no on-going or long term seizure prone condition.

SO, “how did we catch this in Will?”, many of you have asked. William had several ear infections this year when he was a baby/toddler. One in particular was diagnosed in his left ear and treated with antibiotics on Wednesday, February 24th, 2010. The NP also cleaned out his right ear, which had lots of “wax build-up” in it. Will had also begun running a temperature on the 23rd, which was thought to go along with the ear infection.

Will

We went to Nashville on a trip we’d had planned for a while, with approval from the doctor’s office, on Feb. 25th (Thursday). Will was very cranky that day, and just before we left home, I noticed that his neck, right below the right jaw line, was swollen. He was also still running a mild-to-high temp, off and on. I called the doctor’s office, and spoke with a nurse. I also spoke with a pediatrician. Both suspected that the swelling was due to infection from the ear infection. Advice was to continue treating with the antibiotic and Tylenol/Motrin for the fever. They told us he should be fine to travel, and should be improving rapidly. His NP even told us he would be fine to swim in the indoor pool where we stayed in Nashville – though we did not plan to let him.

Well, Friday in Nashville was not a good day for Will. His temperature began spiking pretty high, and the swelling on his right jaw was still visible. He had some diarrhea, not much appetite, and vomited a couple of times. We thought that was due to the strong antibiotic he was on, however.

Saturday morning, we thought that’s Will’s color looked bad – kind of a grayish-yellow. AND, his eyes were very red, constantly. They had been this way for a couple of days, and in fact, we had noticed that he had been rubbing his eyes a lot and complaining the last few days. So, we decided to take him by the Vanderbilt Pediatric Emergency Room, just to have them check him out before we spent the day celebrating my mother’s birthday while visiting with my brother and family in Franklin.

Well, we ended up spending 10 hours at the Vandy Ped ER. His temperature upon check in was 103.7. It reached 104.9 at one point while were there. They began giving him Motrin/Tylenol. They did several blood tests and a CT Scan of his neck (they wanted to make sure that there was no abscessed infection there – there was not). The blood tests returned showing his CRP and sed rate very high, along with his white count. These are considered to be “inflammatory markers”, which could be high for a myriad of reasons, including infection. They told us that they suspected the swelling in his neck was just swollen lymph nodes, probably from the ear infection, based on the CT scan.

They finally sent us home, with no real answers, and even though his temp spiked back up to almost 104 right before we left, they just gave him another dose of Motrin and sent us on our way. Scary.

They advised us to follow up with our pediatrician on Monday, and then even told us they made an appt for William with his doctor on Monday at 2:15.

Monday morning, back in Kingsport, I called William’s doctor’s office. I was still worried, and wanted to see if they could take us in any earlier that day. They had NO RECORD of any appt for us! However, they agreed to work us in if we could be at the office by 1:00, when Dr. G came in that day. We were there at 12:30.

Dr. G looked Will over and within 10 seconds said, “I suspect Kawasaki’s”. HUH? I had heard of it before, in passing, but we were clueless. Was this a disease you caught from riding motorcycles? No one in our family had been on a motorcycle in years – much less our baby boy!

Our pediatrician immediately sent us to a pediatric cardiologist, who did an echocardiogram and EKG. William did not show any swelling in the arteries or heart. He also did not exhibit a “strawberry tongue” or the swollen, red hands/feet that almost all Kawasaki Disease patients exhibit. Therefore, the cardiologist told us that he did not think it was Kawasaki, but he couldn’t rule it out completely.

Will WAS exhibiting the following symptoms: high fever, red eyes (without drainage), swollen lymph nodes in the neck, and crankiness. He had also had a severe diaper rash earlier, about the time he started with the ear infection. These were all “markers” for Kawasaki Disease…but the absense of strawberry tongue and red/swollen hands/feet made it difficult to diagnose definitively.

Dr. G called us while we were still at the cardiologist, after consulting with the cardiologist, Dr. M. He told us that he was still not comfortable with everything, and that Will was a little dehydrated, so he wanted us to go ahead to the hospital and have him admitted, and start some IV fluids.

We did this. At the hospital, Dr. D, the pediatric intensivist (hospitalist), began treating William, along with Dr. G. Individually, these physicians are incredible. Together, they are superheroes, in my opinion. They had both diagnosed William with “intussusception” a year earlier – another very rare condition, difficult to diagnose. Dr. D wanted to know what crazy medical book Will has been reading to pick up on these rare conditions!

Will was given fluids and medication to control his temperature. It was not a very restful night, needless to say. This was all on Monday.

Tuesday morning, they did a gall bladder/liver ultrasound. His gall bladder was swollen, and the hepatic ducts to the liver were being blocked, which was causing his bilirubin to be high. This explained the yellowish-gray skin tone. It is also another “marker”, in some cases, for Kawasaki Disease.

After consulting, the doctors told us that they still suspected Kawasaki, even though Will was not the “textbook case”, since he didn’t have the strawberry tongue and red, swollen hands/feet. He might have “Atypical Kawasaki Disease.”

One of the problems with Kawasaki is that the patient must be treated with gamma globulin WITHIN 10 DAYS of the onset of the symptoms. Otherwise, the damage to the coronary arteries, heart and other organs will worsen, which could lead to aneurysm or even heart attack, or possibly lifelong heart problems. This was Tuesday, Day 7, we believed. Decisions had to be made quickly.

The main risk, a huge risk, with the treatment, which is IV gamma globulin, is that there could be a serious allergic reaction to it. However, this is a risk with any drug. Given all of the information we had, we made the decision to allow Will to be treated.

He received the gamma globulin overnight in the PICU, Tuesday night. No allergic reaction, Praise the Lord! And, he began responding to it almost immediately, praise the Lord!

Will, just a month before all of this occurred.
Will, just a month before all of this occurred.

Wednesday, his temp began coming down. We believed the swelling in his jaw was going down. His eyes remained a little red, however. And, his temp didn’t quite return to normal until Thursday. We began aspirin therapy immediately after receiving the IVIG (Intravenous Immunoglobulin – or gamma globulin), which is something that Kawasaki Disease patients must continue for a few weeks, to prevent any occlusions in the arteries, due to the swelling and constricting that may occur, and “sluggish blood”. His coloring also improved.

We went home on Friday, on aspirin therapy for 6 more weeks. Unfortunately, Will went through some “rebound symptoms” for at time after all of this occurred.  His eyes remained red and irritated for several months. He developed some unusual swelling in his right jaw again, a week after coming home from the hospital.  We kept a close watch on him for a couple years, making sure that these symptoms did not worsen and that others did not reappear, otherwise another round of othe IVIG would have been in order. Will was scheduled for another echocardiogram 6 weeks out, and of course follow-up care and blood work. He continued to be monitored to make sure that there is no further damage to his heart, coronary arteries, liver and gall bladder, etc… for a couple years out.

We are so thankful that the Lord delivered William from any long-lasting effects from his bout with Kawasaki Disease. It was certainly another learning experience for us as we realized how helpless we truly are in trying to control our children’s lives as their parents. They are not “ours.” They are simply entrusted to our care. We dedicated our children to the Lord after they were born (really, before they were born), and we have to continue to entrust them to His care for the rest of their lives.

This can be difficult – it’s our tendency to take control of everything. However, it’s all part of that process, of dying to our will daily, and submitting our lives to the Lord, every moment.

Unfortunately, I admit that I often find it much easier to submit my own life to God than that of my children. They are my heart – they are little pieces of my heart walking around on the outside of my body – and it is hard to let them go, to entrust their care to anyone else. However, we cannot live in fear! This is GOD – their Creator. I do trust Him. He has proven His love and care for us over and over again. He has helped us to overcome fear, time and time again.

“No, in all these things we are more than conquerors through him who loved us!” – Romans 8:37

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Wild Will and his brother, Aaron, this past spring – healthy and happy – a couple of “Power Sports”!

We don’t know for sure that the outcome to every situation is going to turn out “according to our wishes.” However, as a Christian, I have chosen to trust that WHATEVER happens is part of God’s plan, and that His plan is best, even when it comes to my children. Especially when it comes to my children.

So, again, today, I submit to God. I entrust my sons’ care to Him. I walk in faith, not in fear. We overcome the burdens, the trials, the heartache, the pain, the suffering – no matter the outcome. We are more than conquerors!

Blessings,

Tron 🙂

 

 

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