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Charlene - posted on 04/23/2010

Hi! My name is Charlene. I am a stay-at-home Mom of two children: Julia, a Kindergartener, soon to be 7 in November; and Bobby who will be 4 in August. We live in Athol, Massachusetts. Life has been a bit of a rollercoaster ride for us with health issues.

Julia has severe food allergies to peanuts, tree nuts, egg and sesame which makes attending family functions, school events and the typical birthday party a challenge. She is a trooper and has learned to ask adults if foods are safe for her BEFORE eating them! :)

Bobby was a healthy, happy baby until 3 months old when he developed an unexplained fever of 103+ that was unresponsive to tylenol & motrin. He had other symptoms of rash, edema (swelling) and redness on the palms of his hands and soles of his feet. We were in contact with his Doctors office everyday during the Thanksgiving Holiday and was told (over and over) by the covering Doctor, that it was a virus that needed to run it's course. On day 6 Bobby's abdomin became noticably swollen and his inney belly button popped to an outie. I demanded an appointment, with a different covering Doctor, who had Bobby hospitalized. The Hospital's Pediatric Doctor suspected Kawasaki Disease and Bobby was transfered to Children's Hospital Boston for treatment. Unfortunately Bobby was resistant to standard treatment with IVIG, and despite proactive treatment by the leading Kawasaki Doctors, he developed giant coronary anurysms. A secondary complication of GI bleeding forced a discontinuation of all medications (even anti-coagulant therapy) for 24 hours, resulting in the formation of 5 clots. All in all he was hospitalized for 32 days.....In the year following his illness, he was frequently seen by his cardiologist, to monitor his aneurysms and anti-coagulant therapy, and we began to see regression (healing of the inner lining of the artery causing a decrease in the diameter of the aneurysms). Bobby underwent a cardiocatherization, in 2007, which confirmed that the arterial walls had smoothed out and were without pooling blood, so we were able to reduce his medications down to 1/2 (40 mg) asprin daily without any activity restrictions! His cardiologist is pleased with his progress and we only have to go back for yearly checkups! We have been warned that he still has a 50/50 chance of requiring bypass surgery at some point in his life and may be at a higher than average risk for artherosclerosis (hardening of the artery) but that is all something to worry about tomorrow.

We are happy to enjoy our family today!