In March 2014, about a month before Kaylor’s 5th birthday, he developed an upper respiratory infection. There was nothing out of the ordinary, running nose and coughing with a visit to the doctor. I noticed when they took his weight it had spiked up 10 pounds, but I couldn’t remember the last time I weighed him. The doctor didn’t mention it and I thought about it for a couple of days and it had maybe been 3 months since I weighed him last and he looked very puffy. 10 pounds is a lot on a little frame. A couple of days after that he was feeling better, but his stomach was distended and his legs looked large. I pushed on his skin and there was no give, off to the Emergency Room we went.
After waiting quite awhile in the ER (not NCH), they finally took him back and were immediately concerned. His blood pressure was up, something like 124/78 and he had gained 2 more pounds. They kept us for quite awhile double checking his vitals, each time his blood pressure was rising. They didn’t have anything but our word about his weight gain, but they could tell he was retaining water. They did blood work and a urine test and after about 5 hours and a couple of calls to NCH they decided that it was Nephrotic Syndrome. What is that?
The easiest way for me to explain it is that it is very similar to Preeclampsia in a pregnant woman. Here I have a 4 year old with high blood pressure, protein in his urine with a lot of swelling in his body. A 4 year old that has been healthy is now being diagnosed with something that they don’t know the cause or the cure. What they know is that the filters in the kidneys stop working, usually after an illness. This can be a one time occurrence or can go on until he is an adult.
For us, it was not a one time event, or even a 5 time event, but something that reoccurs every few months. Steroids have been our answer but the long term effects are not good. He now takes cyclosporine twice daily, blood pressure meds once a day and steroids when there is a flare up. I test his urine twice a week and visit NCH every few months. They have been wonderful with him, and especially with easing my mind. He knows that he is ill, but he doesn’t let it get him down. He is still a spunky little boy that likes to play baseball, be adventurous and drive his older siblings crazy. His doctor is reviewing his treatment plan and deciding how to treat long term. As long as Kaylor smiles everyday and is still a happy boy, his Mommy is happy and grateful for the wonderful staff at Nationwide Children’s.