Kawasaki Disease

Kawasaki Disease

is a children's illness. It's also known as Kawasaki syndrome or mucocutaneous lymph node syndrome. It and acute rheumatic fever are the two leading causes of acquired heart disease in children in the United States.

The coronary arteries are most often affected. Part of a coronary wall can be weakened and balloon (bulge out) in an aneurysm. A blood clot can form in this weakened area and block the artery, sometimes leading to a heart attack. The aneurysm can also burst, but this rarely happens.
Other changes include inflammation of the heart muscle (myocarditis) or the sac surrounding the heart (pericarditis). Arrhythmias (abnormal heart rhythms) or abnormal functioning of some heart valves also can occur.

Where have I been? Well, for the last week at least I've been in the hospital with Douglas. It started last Saturday when he had a high fever. 3am Sunday morning he threw up twice and after his bath Travis noticed a big bump on his toe and on the other leg little bumps around his sock line. Later Sunday morning his fever returned and Douglas was miserable. He wouldn't stand but just buckle his legs and cry. Every 4-5 hours we were giving him Tylenol. We took him to a pediatric instacare on Sunday where the doctor just thought the bumps were a viral rash. The rest of Sunday Douglas' fever kept going. By Monday morning his rash had spread, covering his feet and most of his legs, a little on the arms and up the back. His lips were brown from dried blood and cracked from dehydration. The whites of his eyes were completely pink. So I took him to his pediatrician Monday morning. The nurse practitioner saw him which I am extremely thankful for because of her 6 years, 2weeks ago she saw her first case of Kawasaki Disease so the symptoms were fresh in her mind when she saw Douglas. They sent us to the lab to get blood work to see if certain levels were elevated. At the lab they couldn't take his blood b/c he was so dehydrated that his veins just collapsed. So we went to Allen hospital where after a couple pokes they got some blood. My pediatrician called me Monday afternoon saying that some of the bloodwork came back and that the levels they were looking for were elevated. She sent us to Medical City of Dallas. We were in ER for 5 horrible hours. I swear that was the worst day of Douglas' life. He had already been poked by 2 places trying to get blood. The ER people were poking him more b/c of the other normal places already having been poked. He had 2 EKGs, xrays, a catheter for a urine sample, and suctioned nose. We found that he tested positive for Strep but they can't be sure if that is separate from the Kawasaki or not. Anyways, Tuesday morning they did an echo cardiogram on his heart and it came back good. The biggest risk of Kawasaki is if left too long it can damage the heart. We caught this way early. Again they need a place to start an IV for fluids to hydrate him and to run his Kawasaki treatment of hemoglobin G. They didn't have too many places left to poke so they suggested the head, saying it wasn't as bad as it sounded. She made it sound fail proof. When they brought him back in they said it didn't work. So they made an appointment to sedate him so they could thread the tube in an outer vein across his chest to the main vein that goes to the heart. Anyways, 2 hours before that appointment they tried the head again and it worked. So he had his IV running through this head. Almost immediately the rash, brown cracked lips and red eyes went away. The hemoglobin was going for 12 hours. Wednesday we just tried to get Douglas to eat and drink. Wednesday was actually pretty miserable b/c he was hooked up to for different machines, therefore, stuck in one place and the wires getting tangled. So between that and sleeping on his IV by Wednesday night the IV was just barely hanging in his head so they held him down and pulled it out. They knew it would be disastrous to try to put another IV in so the doctor said if he drank 3oz in 3 hours he wouldn't need an IV. Well, Douglas did it, barely. Anyways, we went home Thursday afternoon. Douglas is walking again. When he first started walking it seriously looked like he was being rehabilitated and had braces on his legs. It's still not as fluid but much better. Our biggest struggle remains to get him to drink more. Also, he's on aspirin for the next 6-8weeks. If you've heard Reyes syndrome then you know that if taking aspirin and you get chickenpox or the flu then the risk for Reyes syndrome is greatly increased. The doctors assured me that the benefit of aspirin for Kawasaki is greater than the risk of getting Reyes syndrome. So, Douglas meets with our pediatrician for a followup in 1 week and the hospitals cardiologist in 2 weeks. So in the meanwhile our goals are to get Douglas to drink more and to not get the flu or chickenpox, which means NO contact with other children. I'll be anal with that one.


So to sum it up they don't know what causes Kawasaki. They think it's from a virus yet not contagious. Over 4,000 cases of Kawasaki disease are being diagnosed annually in the United States. The symptoms of Kawasaki disease include...
fever
rash
swollen hands and feet
irritation and redness of the whites of the eyes
swollen lymph glands in the neck
irritation and inflammation of the mouth, lips and throat

The only symptom Douglas didn't have was the swollen lymph glands.


Anyways, thanks for everyones prayers!

This is his rash. No, thats not his normal feet color. They were bright red/Purple.

This was Douglas last day when he was feeling much better!