My oldest son is Joshua.. that’s him up top with me a few months ago … and this week he had to have oral surgery (a skin graft inside his mouth) which resulted in the inside of his lip being sewn with stitches to his gums beneath his front teach.
Yeah… ouch. And weird. He’s my child that always has the weird things happen to him. Or he catches weird things. Or he’s born with or develops weird things… like gums that require skin grafts… who does that?
But seriously… if there’s a weird thing in the world, it’s gonna happen to him, or he’s gonna catch it, or whatever. You get my point.
It started before he was born. Due to some unreliable testing during pregnancy (that I didn’t know I should just skip ), I was told he most likely had Down’s Syndrome. So I spent the last 20 weeks of my pregnancy worried and scared and worried some more. Did I mention at that time we lived thousands of miles away from family and I had almost no friends either? It was lonely and terrible.
And after all that, I gave birth to a perfectly healthy little boy.
Around the age of 4, we noticed that he had these weird “bald” spots on his tongue. We took him to the doctor to find out he had “Geographic tongue”… a rare, but mostly harmless condition. He thought it was neat that his tongue looked like a “map” and we just shook our heads and went on.
PS… don’t Google that unless you want to see some disgusting pictures. His geographic tongue is very mild. VERY mild compared with the pics on Google. Just sayin.
Between the ages of birth and around 5 years old, I’m sure… certain beyond a shadow of a doubt… that he had other weird things going on and even more than that since then, but now many years and six kids later, I forget them. 😉
BUT a few months after his 5th birthday, the first “major” rare thing happened to him. It was Kawasaki Disease. That’s what I’m going to tell you about today.
(before I get started… one child… Geographic Tongue and Kawasaki Disease… rare and rare… weird)
Why am I telling you this story? I don’t know. I just got to thinking about it after his whole lip/gums/stitches thing and started writing one night last week when I couldn’t sleep. It’s what I do.
So, here’s what happened. Please note that this actually happened around 11 years ago. I may not have all of the details exactly right, but this is our story as I remember it.
Just after his 5th birthday – I don’t remember exactly when, Joshua got very, very sick. One day he developed a very high fever (around 104°F), that neither Tylenol nor Motrin would bring down… or alternating it every 2 hours. We took him to the pediatrician and he was diagnosed with a virus and told to continue treating as we already had been and he would get better.
But he didn’t. The fever stayed and it was just so high, and he was so hot. And he went from an active (read “bouncing off the walls” 5 year old) to a lethargic, glassy-eyed, little boy.
And then something very strange happened. His lips got bright red… like Kool-aid stained red, and his tongue was also very bright red tongue with these weird bumps on it.
I took him back to the doctor the next day where he saw the nurse practitioner in our clinic and she decided to try some antibiotics. She really couldn’t explain the red tongue or lips, but she felt like if it was some sort of infection. The strong antibiotics would help – she was confident.
They didn’t. Later that night and on day 3, he still had the fever, the red lips/tongue were fading but still there, and he was as pale as a ghost.
And then his eyes changed. I like to describe them by saying that he had “cartoon eyes”… he had bright red streaks in the white of his eyes and they were so awful looking… like when they draw cartoon characters with blood-shot eyes. Sort of like these.
On top of that, late that night he started to get this weird rash in his groin area and around his torso. Back to the doctor we went and our sweet pediatrician was just baffled.
She didn’t know what was wrong… she was lost, we were lost, and my little guy was very, very sick. She started a new, stronger antibiotic and sent us home again.
I clearly remember laying in my bed, my Bible clutched to my chest, with a very young baby also in tow (Caleb was only a couple of months old), crying and sure that my little boy was going to die. He was just so hot and tired and listless and we had no idea what was wrong. I was terrified.
But the next day, we called the clinic with our new symptoms – this time his hands and feet were bright red and he still had the rash and fever and she told us to not come to the clinic, but to go straight to the hospital for admission.
We loaded him up, along with the baby and off we went.
They admitted him and started him on fluids and laid damp blankets on him trying to cool him off (it was day 4 of a fever ranging from 102°-105°) and just watching him be sick. Nobody knew what to do. Another pediatrician was called in and he was drawing a blank too and it was awful.
And then… I truly believe because of the power of prayer, we had a breakthrough. We had been praying diligently, along with our church family, real family, and even our doctor (she was an amazing Christian lady) and God answered those prayers.
Because we had been to the clinic 3 or 4 times and had alternated between our pediatrician and the nurse practitioner and also shared many phone calls, our doctor had not seen or witnessed all of his symptoms (they would come and go, he didn’t have them all at once).
So that first evening in the hospital, after he was admitted, she came to check on him. She sat down and asked us to start at the beginning and tell us everything we had experienced over the past 4 days.
We listed these things…
- High fever that would not go down
- He was pale and weak and lethargic
- Bright red lips and tongue (along with strange bumps on his tongue)
- Rash on his groin and torso
- Red hands and feet, and the skin on his finger tips and around his fingernails began to peel off
- Crazy blood-shot eyes
We covered as much as we could remember and then suddenly, I saw it in her face – a light came on. She asked us to hold on a minute while she left the hospital room and she came back with a huge medical textbook. She flipped through it for a few minutes and finally found what she was looking for… Kawasaki’s Disease.
This is another thing that you can Google for images if you dare. Some are really, really bad. Joshua’s was pretty bad – especially his eyes and the red tongue/lips and his peeling fingers. Back to my story…
As she began reading the symptoms…. it was like she was reading about Joshua exactly. She told us that Kawasaki’s Disease was a very rare childhood disease. Only a tiny percentage of children develop it and there’s no known cause or test to diagnose it. It’s more common in boys than girls, and rarely occurs in children 5 or older (he was 5 at the time).
At that time, she said there were 5 main symptoms and if a child had at least 4 of the 5, they were diagnosed with the disease (I can’t tell you which are/were the main symptoms at that time, but he had ALL of them plus some of the ones currently listed here). She told us there was a treatment (that they didn’t even fully understand why it worked) and that it would have to be flown in for him (it cost more than $10K if I remember correctly, but praise God we had excellent insurance).
As soon as it arrived he would be started on it immediately and he should dramatically better within 24 hours… and he was.
It was a fascinating thing to watch, how rapidly he improved after he started getting the transfusion of intravenous gamma globulin (a part of blood).
We stayed in the hospital that night as he got the IV and if I remember correctly we were discharged the next day… with a new little boy on our hands. He was quickly returning to his normal, happy-go-lucky self (although the skin continued to peel off of his hands and feet for a couple of weeks).
Our journey with Kawasaki’s Disease didn’t end there… because it can lead to childhood heart disease, he had to be on aspirin daily for the next year and he had to go back to a cardiologist every year for five years to have an ultrasound of his heart to check for damage or problems.
Praise the Lord he never had any of the residual problems that children with Kawasaki’s Disease can develop (the chances of developing heart disease and other serious problems increase if it’s not diagnosed and treated within 5 days… we were on day 4) and he’s a healthy 16 year old now, but that was by and far one of the scariest things we’ve ever gone through with any of our children!
I still look back on it and see it as one of those moments in life where I saw God move and answer prayers in a real and tangent way. He gave that doctor the answer we needed. He healed our little boy. And we still give Him glory for it today.
Just out of curiosity… do you know a child that’s had Kawasaki Disease? Have you even heard of it before now? To this day, we’ve never met or known another child who had Kawasaki Disease.(although I have heard of a celebrity’s child who had it a few years ago… can’t remember who, though).