Sunday, December 29, 2013

KAWASAKI DISEASE AWARENESS



It is a MUST that I post about Kawasaki Disease to help awareness!  My son Carson just turned 4 years old.  He was born a very healthy boy with no problems at all, and had hardly ever been sick. At a year and a half he got sick with a slight rash, a fever, and red eyes.  (He did not have many of the symptoms which made it even harder to diagnose.)  I am going to try to make a long story short and hit the high points.  

We went to the doctor 3 times.  They said it was strep.  They gave him 2 different antibiotics that didn't work. Moms, Listen to your instincts!  I knew something was wrong.  I kept taking him back to the doctor. I am sure they thought I was nuts, but the fever would not break.  The third time the doctor mentioned something called Kawasaki Disease and sent us to the hospital.
  
Kawasaki Disease is an autoimmune disease in which the medium-sized blood vessels throughout the body become inflamed.  To read more in detail about this disease click here  http://en.wikipedia.org/wiki/Kawasaki_disease

They ran all kinds of tests at the hospital and kept saying it was a virus. Still...I knew it was something more. They were ready to send us home saying his fever broke.  I threw a fit.  I asked them to stop giving him Tylenol and his fever shot up to 104. They started running tests again. There is no test to say that a child has Kawasaki Disease.  They normally come up with this diagnosis with the process of elimination...which can mean life or death.  If a child gets IVIG which is a blood product that is administered intravenously ( http://en.wikipedia.org/wiki/Intravenous_immunoglobulin ) within 10 days of the first day of the fever...the child will in most cases by okay. My child got his dose after the 10 day window.  The first dose did not even take with him.  We had to stop it because his lips turned blue and he was struggling.  (This is very rare from what I hear)  We went to the ICU the second time and got a different type of dose.  We went home and problems continued.

Carson's whole process with Kawasaki Disease was very A-Typical.  He ended up in and out of the hospital with trial and error.  He ended up with aneurysms in the coronary artery to his heart.  One went away and the other one...rather large, has hung on at the same size since.  To get rid of the Kawasaki Disease symptoms all together Carson went to the hospital many times. He got another dose of the IVIG.  He went in twice for High Dose Steroids...He was on steroids at home as well.  After none of that worked they put him on Remicade http://www.remicade.com treatments for over a year.  


This is our last Remicade treatment

The Kawasaki Disease symptoms are gone (Thanks to God) but he is still on an Aspirin a day and a blood thinner.  The blood thinner prevents clots from forming inside the aneurysm.  We still go to the hospital once a week to regulate his blood since he is on the thinner.  We also visit the heart doctor often to get Echo's to look at his heart.  Once or twice a year we either get a hearth cath or a ct scan to check everything out. The doctor is especially looking for scarring which could cause the arteries blockage. (I am not a Dr. or any type of specialist...I am just telling my story in my own words.)

It is tough to have a 2, 3, and 4 year old on a blood thinner...especially a boy!  He is all over the place!  ;-)  I am sure the worry will never go away as he gets older.  They say that once you have an aneurysm over 2 years it usually doesn't go away, but I have met a couple of ladies online that have given me hope.  Their child's aneurysms did go away after 2 years. I pray about it daily and trust in God.  People ask me how we get through this...it is through God!

Carson is a happy, healthy little boy otherwise!  He now goes to preschool and has many friends!  His personality is awesome. Through it all he has never complained and he has handled it all like a champ! He is our Blessing!


This is Carson Now!  :-) We had a great Christmas! 

  
I am writing this blog to share with those of you LOOKING.  I looked and looked.  There are groups out there to join that have other moms that share their stories.  Ask me about it and I will lead you to them.  As I said earlier, this is such a rare disease and it is so hard to diagnose. Moms, trust your instincts and push those Doctors and Nurses!  If your child has a fever that will not go away...mention Kawasaki Disease!  I pray for all of you that are going thought this and I am here if you need someone to talk to!  

Luv,

Dawn