Rebecca DZebulon, GAI fight forMy son Porter
My son Porter was diagnosed with Systemic Juvenile Idiopathic Arthritis 18 months ago; just two weeks after his 3rd birthday. It all began on October 8th, 2015. Porter and I were sitting on the couch at 3 in the morning, watching cartoons and sucking down popsicles to remedy a fever that had awaken him. For three weeks, that fever never let up. For three weeks, we entered our Pediatrician's...
My son Porter was diagnosed with Systemic Juvenile Idiopathic Arthritis 18 months ago; just two weeks after his 3rd birthday. It all began on October 8th, 2015. Porter and I were sitting on the couch at 3 in the morning, watching cartoons and sucking down popsicles to remedy a fever that had awaken him. For three weeks, that fever never let up. For three weeks, we entered our Pediatrician's office, Urgent Care facility and the ER every few days only to be sent home with another diagnosis and a handful of antibiotics that didn't help. Porter grew worse by the day. His WBC and heart rate kept rising, he was extremely fatigued and couldn't walk, feed himself or move his head. He even stopped laughing.
On October 28th, we were back in the Pediatrician's office for a 4th time and before the nurse left the room, I requested another CBC. Our room suddenly filled with every doctor in the office that day along with about 3 nurses. Every one of them quiet and scared to speak. When one finally spoke, all he could muster was, "Go home, pack a bag.. probably for at least 2-3 days and take him to the hospital. Now."
I cried; pregnant, exhausted and scared on the nurse's shoulder as they prepared papers for me but I continued on and followed orders as instructed. Once in the ER, doctors again tried to send us home saying a WBC of 38 was "not the worst they've seen" but I insisted on answers and requested doctor after doctor until I found one that listened. Eventually, we met a Pediatrician who did and Porter was admitted to the PICU that night. Tests over the next few days revealed inflammation in all his major joints, lymph nodes, lungs and Pericarditis. At its highest, his WBC peaked at 43 and his heart rate reached to 166 bmp. Porter received his SJIA diagnosis 5 days after being admitted and WALKED out of the hospital on day 10.
Over the next few months, Porter responded really well to treatment. So well in fact that after only a year after his diagnosis, his Rheumatologist had considered his disease "inactive" and planned to start weaning him off his one and only medication at his next appointment. Two weeks before that day would arrive, we found ourselves fighting this disease once again.
Christmas was just a few days away, and flu season was in full swing. Porter unfortunately, caught the bug and developed a double inner ear infection as he recovered. Antibiotics helped clear the infection but not without triggering a flare-up in his neck. Again, he lost mobility of his head or couldn't lay down without screaming in pain. An MRI soon confirmed mild Synovitis at the base of the skull and we've been fighting to resolve the inflammation ever since. It's been 5 months now, and although he has made some improvement, his neck still isn't better and he's experiencing other flares in his legs/hip and also short bouts of fever in the evenings. If things don't improve in the next month, Porter may have to receive a new medication through an IV infusion every two weeks for the next 2+ years...
Our fight is ongoing but I endure for Porter, to share his story, to be his voice and show others what life is like for a child with SJIA. I fight to spread his story for those moms who have shed the same tears I've shed and want nothing more but to see their child live a normal life, free of fear, pain, needles and constant medication.
Porter is an amazing young boy, with a great spirit and amazing strength! I don't just say that because he's my son but because it's true. He's endured a lot in his short life (he also battled FPIES as an infant) but even during the worst of days, when he's in more pain than he's ever known, he smiles, cracks a funny and marches on.