In 2011, at her 20-week ultrasound, Carson’s mother discovered that he would be born with kidney reflux, a disorder in which urine flows backward from the bladder. After testing and a hospitalization over the course of the first year of Carson’s life, the reflux was assumed resolved.
In April 2015, Carson went for a routine appointment to see his allergy doctor who discovered he had a heart murmur. Concerned, the allergist contacted Carson’s pediatrician for a more detailed exam to determine if it was an “innocent” murmur - harmless sounds made by the blood circulating through the heart.
In May of 2015, Carson became ill. Thinking it was just a virus, Carson’s mother took him to the emergency room at Children’s Hospital at Erlanger. Extensive testing didn’t reveal anything. And over the course of four days and a stay in the Pediatric Intensive Care Unit (PICU), he miraculously improved. Carson recovered so well – virtually overnight – even the doctors were scratching their heads.
A few days shy of one month after his hospital stay in May, Carson fell ill again with the same symptoms. Not taking any chances, he was readmitted to Children’s Hospital. Over the course of a month, labs were drawn countless times and various specialists ordered detailed testing. Carson had severe nausea, vomiting, and had virtually no appetite. He did not eat for more than 10 days, so a feeding tube was put in place. He also stopped walking, sitting up, slept 20 out of 24 hours, and had extreme sensitivity to touch. When he was awake, he would stare off in the distance, causing concerns. His kidneys were enlarged and as was his heart (the left side being significantly larger than the right). Doctors administered a scope procedure, EEGs, Echocardiograms, MRIs and other tests to determine the cause of this ordeal. Through the testing, the amazing team of specialists discovered many layers to his deteriorating health. He was diagnosed with epilepsy, grade-4 kidney reflux, Guillian-Barré Syndrome (GBS) which is an immune system disorder, and a rare heart defect called pulmonary anomalous venus return (PAVR).
With these results, Doctors immediately put a game plan in motion. Carson received five doses of immunotherapy for his GBS as well as daily physical and occupational therapy. And he was on his way to spend some time in inpatient intensive rehabilitation, when he surprised everyone once again by improving overnight. It was such an improvement that he was seen in out-patient therapy and was discharged for home!
Carson now sees a neurologist, and will do so for the foreseeable future. His parents are hopeful that the epilepsy will resolve itself. He is awaiting a correction procedure for his kidney reflux and will have to follow up with urologists and nephrologists as he grows. For his PAVR, he will have correctional open heart surgery in the spring of 2016. He will have multiple specialist appointments to monitor these issues throughout his life. Carson’s mom, Heather says, “Thanks to the amazing team at Children’s, he is now back to his vibrant, rambunctious, dinosaur-loving, 4-year-old self.”