This is our precious D’Angelo Antonio in late Summer of 2008. Shortly after this picture was taken, he was diagnosed with a little known syndrome called Kawasaki Disease. This was, by far, the scariest week of our lives, as well as a week to really appreciate the quick thinking of his pediatrician. This is our Kawasaki Disease story:
It was Thursday, October 30, 2008…Halloween Eve (We had been looking forward to this Halloween because, although it wasn’t his first, it was the first year D’Lo would really be aware of the costumes and candy, and we were all looking forward to the reactions of our one year old). He had a well child check with his pediatrician that included immunizations. Nothing eventful, the appointment came and went, and we continued on about our busy day. That evening, D’Lo started to feel warm to the touch and just didn’t seem like himself. I assumed he was having a mild reaction to his immunizations, gave him some baby Motrin, and we all went to bed.
Late the next morning he began spiking another temperature but he seemed to respond well enough to another dose of fever reducer that we decided to proceed with the Halloween festivities taking place at my sister’s house. He had so much fun, a little fussy, but mostly amazed by the abundance of funny characters coming to the door and that big bowl of candy that was so accessible. Saturday he began to worsen, and on Sunday I was called away from the dance team’s halftime performance (I was coaching my two daughters’ dance team) because he had grown so miserable that we could no longer accept this as a small fever or mild reaction to his shots. In just the two hours I had been away from him, his symptoms had significantly increased and further worsened. He was now much hotter than before and not responding very well to the fever reducer, he was extremely uncomfortable and inconsolable. He was beginning to develop a body rash that extended down into his groin area, his eyes were becoming pink, and his mouth was red, not pink, it was red, and I’m talking about his entire mouth-lips gums, and tongue.
I rushed him into the emergency room where, of course, after a long wait, they summed up his symptoms with the simple explanation that he had an ear infection and that he was probably having an allergic reaction to something. I kept pointing out the bumps that were forming on his little tongue and asking if it was even possible to get a rash on a tongue. My questions and concerns seemed easily dismissed, as those of an overly protective mother would be, and we were sent on our way with a paper prescription for antibiotics.
This just couldn’t be right…I mean something seemed wrong and that feeling just wouldn’t leave me. We went directly into our own pediatrician’s office the next day. She took one look at him and began talking to me about Kawasaki Disease. No, I had never even heard of this but I listened eagerly as she began to explain. The nurse came in to check my son’s temperature and when it quickly read 106 .7 degrees, she immediately called for a transport and we were quickly taken to the Children’s Hospital.
The following five days were something we will never forget. Nearly a week of watching my baby boy being poked with needles, IV’s, blood draws (many unsuccessful and traumatizing), and the worsening of his symptoms which now included swollen, red palms of his feet and hands. He was so miserable and found myself thanking God that I still nursed him, as that was his only source of comfort. He just laid there, lifeless, on either my chest, lap, or next to me on that uncomfortable, little couch-bed. The only time he seemed to have any energy at all was when he was being terrorized by yet one more blood draw…God, please help my baby!
After an inaccurate diagnosis of a bacterial blood infection, which included the necessity of a spinal tap on his tiny one-year old back and a broad spectrum antibiotic, they finally settled back in with the original thought, that this was Kawasaki disease. They began to treat him immediately with IVIG (explained to me as concentrated antibodies from someone else’s blood). Through that night, and as an answer to prayer, I began to quickly see him improving. He was responding well to the IVIG and regaining some of the life I had seen slipping out of him. Now the concerns about his little heart became the issue. With Kawasaki Disease, there is a critical ten day window in which treatment is crucial in order to slim the child’s chances of complications to the heart. Now, a whole new set of worries as the cardiologist met with us to perform an echocardiogram, checking for initial damage. None…thank You again Lord.
Three months later we were to meet further with cardiogists to recheck my baby’s heart for damage that may have been undetected or not yet developed during the initial echo. Please God, give us some good news one more time. Again my prayers were answered and we walked out of that office with a healthy, “normal” seventeen month old. We realized just how fortunate we really were to have received precious treatment in time.
There are not enough words to both thank those in the medical field who recognized the symptoms, as well as to encourage those in the medical field who are uneducated about this disease to get educated. Our D’Lo is here today, alive, active, and healthy, and we appreciate every minute of it, because he got the help he needed.
If you want to learn more about Kawasaki Disease, its symptoms and treatment, and read other personal stories on the subject, please visit the Kawasaki Disease Foundation Website at www.kdfoundation.org
