January 26th is Kawasaki Awareness Day, and in order to help spread awareness, I’d like to take this opportunity to share our story. My son was diagnosed with Kawasaki Disease March 30th, 2015.
What is Kawasaki Disease?
Kawasaki (pronounced cow-a-SA-kee) disease is the most common cause of acquired heart disease in children.“Acquired” heart disease means it develops during childhood, rather than being present at birth (congenital). Kawasaki Disease is an autoimmune disease. About 1 in every 5,000 children in the United States gets Kawasaki disease. No one knows what causes it. It is not hereditary or contagious. It is possible that infection might serve as a trigger for the body’s own immune system to attack itself.
Kawasaki disease causes problems with the heart, such as:
- Inflammation of a child’s blood vessels (vasculitis), especially their coronary arteries. The coronary arteries supply the heart with blood. Inflammation can lead to enlargement of these arteries called aneurysms. Then a scar can form, narrowing the arteries. In the worst case, a clot can form in the arteries and block blood flow to the heart.
- Swelling of the heart muscle (myocarditis) or the sac around the heart (pericarditis)
The most serious problems from Kawasaki disease are the effects it may have on the heart and its arteries. According to the American Heart Association, 1 in 5 children with Kawasaki disease have problems with their heart because of the disease.
Any child may get Kawasaki disease. All children who’ve had this condition need to be followed and have regular check-ups to see if any problems develop. Some may need ongoing care for long-term issues.
Our son, Carson, was born February 12th, 2013. Everything was wonderful! I had a great pregnancy, a completely natural birth, no complications, not too early, and Carson seemed to be perfectly healthy.
I remember having a feeling while I was pregnant with him…something just didn’t quite feel right. I thought I was probably just feeling what every pregnant mother felt. We already had 2 other perfectly healthy children, so I didn’t really have a reason to be concerned. I tried not to worry too much, but that feeling never really went away. After Carson was born, I remember feeling extremely overly concerned (as if this was my first child again). I noticed that it seemed his circulation wasn’t great, his fingers and toes were cold and had a blue tint. I knew this wasn’t uncommon for newborns, so I told myself it would pass.
As he got older, I could tell that circulation was still an issue. His hands and feet were always cold, and when we would carry him on our hip, his lower legs would turn a blueish purple. If you pressed on his leg, there would be a white spot where our finger had been.
His digestion also seemed to be weak. As an infant, sometimes he would go up to 5 days without having a bowel movement (*he was strictly breastfed at this point, so solid food was not the issue), and when he did have a bowel movement, it was very frothy, and at times there would be pieces of what looked like the lining of his digestive tract.
He also always seemed to have (and still does, but MUCH better) the “slapped-cheek” look (red and slightly rashy). I mentioned all of these things at every well-child check up, but our doctor never seemed to be too concerned about it.
I also felt like he wasn’t gaining weight as well as he should have been. His body was very “frog-like”(round tummy, but his arms and legs didn’t have much baby fat on them). I knew something was wrong, even though our doctor said everything was fine, my mama’s intuition knew better.
As a healthcare provider myself, I did everything that I knew how to do to – I removed every possible thing from my diet that could have been effecting him, I treated his digestive system with different nutritional supplements, adding probiotics and homeopathics, but still something wasn’t right.
This went on for the first 2 years of his life. Looking at Carson, he really did seem fine (other than the symptoms only a mother would notice). Other than being underweight, all of his developmental milestones were right on track. He was very smart, had a great personality, good appetite…I started to wonder if I was just being paranoid.
When it finally happened…
All of my children had been fighting a cold, no big deal. I treated them with my go-to home remedies. My two older children immediately improved, but Carson did not. Carson fought his cold for about 2 weeks, which I thought was extremely strange because my kids always improved in less than a week. Then, the fever came on. I didn’t panic because I had always been able to handle their fevers by giving them extra calcium supplements. *Fevers are the body’s way of responding to the infection by pulling calcium out of the bones to put into the blood stream to boost WBC production which helps fight the infection. If you add proper calcium supplementation, the fever will go away, while at the same time boosting WBCs.
The next day the fever was still there. I was very surprised, I thought for sure his fever would have broke during the night. My sweet, loving, easy going little boy had become extremely irritable. Again, just thinking, “he’s sick, we all get cranky when we are sick, this will pass…he’ll be better in the morning”.
The next day, his fever was still high (104 eventually getting up to 106). While changing his diaper I noticed a red blotchy rash all over his diaper area. The rash resembled hives, but it was not raised, and it did not appear to itch him. This was odd, I had never seen anything like this before. He was extremely irritable, very lethargic, and had no appetite.
That night, I had put Carson to bed around 8:00 p.m., and he woke up at 11:00 p.m. completely miserable. It was dark so I couldn’t see him that well. I took him out to the kitchen and when I turned on the light I was shocked. The rash had moved from just his diaper area to all over his entire body (mostly his trunk). His eyes were completely blood shot. PURE RED. There was NO WHITE in his eyes what so ever! Ok – Now I know that at this point most parents probably would have taken their child to the emergency room, however, my mama’s intuition was urging me to do more research before we made the call.
A little back story – This happened during the same time as the measles outbreak in our community. I knew if I called the doctor and said my child has a strange rash, all hell was going to break loose, and he would probably be misdiagnosed. I was 100% sure it was not measles.
So, I turned to Dr. Google and literally stayed up all night doing research with my child in my arms. Now, I know some readers may be judging me right now, thinking I’m a terrible mother for not taking him to the ER right away, but I absolutely knew without a doubt I had to look into this! (And I know in my heart, I was being guided every step of the way. I could definitely feel the presence of our guardians watching over, leading me to the correct information.) I knew it was ok to wait until morning. If I had had any doubt at all, I would have taken him to the hospital right away.
The most common results matching his symptoms came back as Measles, Scarlet Fever, and Kawasaki Disease. Immediately, as I began looking into Kawasaki Disease I knew this was it. No doubt in my mind. Here’s the tricky part, Kawasaki Disease is often misdiagnosed as Measles (remember what I said earlier about why I didn’t take him to the ER?).
Kawasaki Disease is extremely rare, especially in this area. I knew that I had to go into the doctor’s office with enough information to get them to listen to me. This is not a put down to our medical community, it’s just that most doctor’s have not experienced this, and with everything going on in our community, I knew there was a good possibility that my son would not get the treatment he truly needed.
I called the doctors office as soon as they opened. Sure enough, they reacted exactly as I had thought they would. Quarantined us in a room. Angry that my child would not keep a mask on. Flinched every time my son made a movement towards them.
The doctor was new, and had no idea what I was talking about. He called another doctor into the room. They looked at Carson, took pictures, and went into the hall. They entered again with more doctors and then stepped into the hall again. They entered the room again with more nurses and med students….and then went back into the hall. Finally, one of the doctors who had been in practice the longest, came back in.
I can not tell you how impressed and relieved I was by his behavior. He sat down next to me and put his hand on my knee. He could obviously tell how scared I was, even though I was doing everything in my power to hold myself together. He leaned in and said, “You are a very good mother. Your intuition is spot on. We need to get you to Children’s Hospital immediately. I will make the call, they will be expecting you. You know, you’ve saved your son’s life. This disease is extremely rare. This will probably be the only case I will ever see in my whole career.” He was so sweet, he made sure I was going to be able to drive my son to Seattle. He offered to make arrangements for me if I wasn’t able to.
I ran home quickly to tell my husband what was going on, and within 30 minutes of our check in time at the doctor’s office, we were already on our way to Seattle.
I HAVE NEVER PRAYED SO HARD IN MY LIFE!
That moment when you receive the news that your child has a serious health problem, and this is an emergency situation –
Life. Just. Got. Real!
Just prior to this, I had been dealing with several emotional things in my life. Things that felt like a big deal. All the way to Seattle (about 2.5 hours from where we live), all I could do was pray that God would help my child. What I wouldn’t do to make sure he was ok. I have never cried so hard. I can’t even describe the feeling. It was as if I was in a tunnel. I couldn’t even see the world around me. All I could see was my son in the rear view mirror, and the road in front of me. I didn’t even feel like was on on Earth anymore.
Nothing else mattered.
All of those things that I had been worrying about; stressed about work situations, stupid squabbles with my husband, beating myself up for not having a perfectly clean and organized house. Suddenly, those things didn’t even exist.
The trip to Seattle couldn’t have gone better. No traffic, perfect timing, and we drove right on to the ferry.
When we got to Children’s, they had to run several tests. Carson only had 3 of the 5 symptoms
of Kawasaki Disease (high fever lasting more than 5 days, rash, and red lips/strawberry tongue). His hands and feet were also swollen (I had noticed a few days prior that his socks were leaving marks around his ankles), but had not yet begun to peel. Each test that came back confirmed that we were definitely dealing with Kawasaki’s. Inflammation in his body was off the chart and his immune system was severely stressed.
We started his 12 hour IVIG treatment that night and Carson started to improve within the first 2 hours of treatment! We were in the hospital for 3 days. During that, time he had his IVIG treatment, high doses of aspirin, Echo’s , and several lab tests.
Carson was lucky because we caught his disease within the first 10 days (about day 5). After day 10, Kawasaki’s can be fatal without proper treatment.
He did not have any damage to the coronary arteries, no aneurysms, or long-term damage to his heart!
After coming home, Carson finally started putting on weight! He gained 5 lbs. within the first month! It took a while for him to get back to “normal”…well our new normal that is. We’ve had to make even more dietary changes, mostly following an autoimmune protocol type diet for him (avoiding gluten, most grains, nuts, eggs, dairy and nightshades).
As I said earlier, there is no known cause for Kawasaki’s. However, I have some of my own ideas.
This is purely my opinion:
I believe that Kawasaki’s, just like all autoimmune diseases, are due to our environment (inside and out, i.e. our gut flora) and genetics. It is a fact that with each generation, our immune system is getting weaker and weaker.
Most people don’t quite understand that gut flora is so vital for a healthy immune system! About 80% of our immune system is in our gut. Without proper balance we can not fight off invaders, or properly digest our food. Do you know where our gut flora originates? In utero, and as the baby passes through the birth canal. If the mother does not have sufficient gut flora, the baby wont either. How many women are given C-sections? How many women have to take antibiotics due to Group B? Another important factor is after birth, baby’s digestive tract is sealed from breast milk, but not every woman is able to breastfeed. So not only do we not always get such a great start, then we add processed foods, sugar, and GMOs to our diet and it’s no wonder why 90% of my clients (including newborns) have Leaky Gut Syndrome!
Carson was born in the caul (inside the amniotic sac), which only happens in about 1 in 80,000 births. Being born in the caul, he wasn’t exposed to sufficient vaginal flora to help “seed” his gut. Having breastfed him for 23 months was a huge benefit because this is what, I believe, helped ward off his disease. Research shows that often times babies with poor gut flora will have a dramatic rise in symptoms after they stop breastfeeding. Carson was diagnosed 8 weeks after I stopped nursing him. I can’t help but think this had something to do with the onset.
Not only this, but often a disease will come on after a traumatic incident, which our family had also just gone through around the same time.
Ultimately, we must take more responsibility for our health, and for the health of our children. We are constantly being poisoned by the food we eat, the water we drink, and the air we breathe. We MUST take action to try and limit our exposure as much as possible (i.e. organic food, pure water, nutritional supplementation when needed, natural cleaning products, homemade hygiene products, etc.).
I do not accept the phrase,
“We don’t know why this happens…”.
There is a reason! Find it!
I truly believe it all comes down to the same thing for any condition. Something (a toxin) enters your DNA and alters your genetic expression (a switch gets flipped on), resulting in an autoimmune disease. Now, what disease that is, will be determined by your genetic predisposition. In our case, it was Carson’s heart – Kawasaki’s. As we have discovered recently, due to some health issues my mother has gone through, it looks like the heart is my family’s weak gene. Maybe someone else would have developed Chrohn’s Disease, or Hashimoto’s, or Autism (which our second child has). Maybe it doesn’t affect your child when they are young, but as an adult they could develop Rheumatoid Arthritis or Lupus…the list goes on.
If you haven’t caught on by now, our family lives a very green lifestyle. We have a 100% organic diet and we only use natural products to clean our home. We avoid all toxins and allergens the best we can.
Now, I’m not saying this is exactly what happened but it makes me wonder…
A few days before Carson got really sick, he had spilled a can of paint on the carpet (lime green paint on my cream colored carpet! And how he even got the paint and got the lid off, I have no idea!!! …Children!) So, I called a carpet cleaning service to try to get it out.
While researching Kawasaki’s, I discovered that there is a theory that the chemicals in carpet cleaners could be a potential trigger. This is not confirmed, but I do find it very interesting that after we had our carpet cleaned, with products we would not normally use, Carson was triggered. With taking everything into consideration, I really do feel like this was the final blow to his immune system.
I realize that maybe I have said some things that not everyone will agree with or approve of. My intention is not to be controversial. This is just our story.
And again – please do not think I am putting down the medical profession in any way. The fact is, they just didn’t know. This story could have ended very differently had I not followed my intuition and also had a doctor who was willing to listen to me. Which finally brings me to one of my main points in this whole post!
Mama’s – listen to your intuition! No one knows your child better than you do! Don’t you ever doubt yourself for a second! If something doesn’t feel right in your heart, you do everything that you need to do to figure it out!
The next message I am trying to convey is this:
It took the biggest slap in the face of reality for me to get my crap together and stop worrying about all of the petty things that bothered me. (Yes, I still overthink things, get worked up about things I can not control, and have ridiculous expectations of how clean my house is really supposed to be with 3 children…but over all, I have an entirely different perspective on life). Things that used to bother me, just don’t anymore. And for that, I am forever thankful. Every day I can enjoy being present with my children, snuggling them, hugging them, laughing with
them…every tantrum, every meltdown in the grocery store, every pile of poop I clean off the floor (…the joys of potty training…). All of it. THIS IS LIFE. Real life. Enjoy every moment of it.
Please share, share, share! Help spread awareness, inspire other mama’s, we don’t have to face the world alone! I have never talked about our story publicly, and if this post can help one mom feel a little more connected, mission accomplished!
Sending love to all of my sisters,
…One more picture of this adorable face!
Carson, November 2017.
We have done an incredible amount of healing and he is thriving! Since the original post, we have learned even more. My children and I all have MTHFR, which is a genetic mutation (approximately 60% of the population has this), which can lead to several other issues. This explains even more so why our Carson has an autoimmune disease, as well as the other health issues our family has experienced.