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A Mac Mom's Medical Journey

Story of fear and hope

By Kelly Roma, Rocco's Mommy June 30, 2013

Rocco, my four-year-old son, had a fever and a cough over the weekend of May 18th. When Monday and Tuesday came around, he seemed fine, so he went to school.  Tuesday morning, I got a text from his teacher that he wasn't feeling well and had a fever.  By the time I got to his school, ten minutes away, he had started vomiting.  For the next 24 hours, he got sick nearly every half hour.  

 

On Wednesday afternoon, I noticed a rash on his back and underarms.  His hands were red and swollen and he still had a fever, so I made an appointment with his pediatrician.  While waiting to leave for our appointment, his eyes became bloodshot and his lips were dry and cracked.  He just looked miserable.  My motherly instinct kicked in, and I packed an overnight bag with anticipation of being directly admitted to Arnold Palmer Hospital for Children.

 

At our pediatrician’s office, German Measles and Scarlet Fever were mentioned.  Our doctor also pointed out that he had swollen lymph nodes and a strawberry tongue, so off to Arnold Palmer we went.  When we got to the hospital, not knowing what was wrong, they had placed a sign on his door that prohibited entry without a mask.  I was so scared and nervous for my little boy.

 

After chest x-rays, an ultrasound of his abdomen, an EKG, an echocardiogram, and umpteen blood tests, we got the diagnosis:  Kawasaki Disease.  What in the world is Kawasaki Disease?  I have read “it's like having sunburn on the inside of your body!”

 

Kawasaki Disease (KD) is a serious illness characterized by inflammation of blood vessels throughout the body that primarily affects young children and infants.  It is the leading cause of acquired heart disease in children. Without treatment, about 25% of children develop heart disease involving the coronary arteries. Timely diagnosis and treatment -- within 10 days after fever appears -- is highly effective in preventing heart complications.  Treatment includes intravenous gamma globulin (IVIG) and high doses of aspirin.  IVIG is antibodies from over 1,000 blood donors! DONATE BLOOD TODAY

 

We are very fortunate that Rocco got the treatment he needed in time and that his pediatrician recognized the signs and did the appropriate testing.   He will be on a low-dose aspirin daily for six to eight weeks.  He has had an echocardiogram two weeks after his discharge, which showed no heart damage, and will have another one in six weeks to be sure there was no damage to his heart.

 

Part of the second phase of Kawasaki Disease is peeling of the skin and joint pain.  Luckily, Rocco's fingers and toes have had minimal peeling, but the joint pain hit him hard.  He was in so much pain one day he couldn't even stand up, let alone walk.  He still complains of joint pain, but he is doing much better now. I can't help but wonder what is in store for him in the future.  

 

A Japanese pediatrician, Tomisaku Kawasaki, first described the illness in medical literature in 1967.  Since this disease has not been around for that long and is so rare, there are not a lot of studies about the long-term effects. 

As of right now, there is no specific laboratory test to diagnose KD.  A doctor makes the diagnosis based on the child’s symptoms.  Symptoms of Kawasaki Disease include: a fever that lasts for five or more days, bloodshot eyes, dry or cracked lips and strawberry tongue, a rash, swollen feet and hands, and swollen lymph nodes.  If you notice or suspect your child is having these symptoms, please mention Kawasaki Disease to your doctor.

 

Actress Sarah Chalke, whose son suffered from KD, has started a fundraiser to help fund a new test which could quickly diagnosis this disease.  I have created my own team through the fundraiser.  If you would like to donate, please click here.

 

If you would like more information about this disease, please visit the Kawasaki Disease Foundation – click here, and remember to trust your gut when it comes to your kid. We are grateful we trusted ours.

 

Kelly Roma

-        Rocco’s mommy