Bump in the Road

About mid May, I noticed my youngest, who was 18 mo at the time, had increased puffiness around her eyes. Every morning seemed to be when the puffiness peaked and by evening, it seemed to diminish. I would point it out to other family members, but no one else really noticed a difference. Dave saw the increased swelling, but we both chopped it up to allergies since the air was being stirred up by so much rain. Nothing else seemed to fit. We didn't change anything that would trigger us to think that the culprit was environmental. It was just odd because she didn't acted any different and no other symptoms were present. As those two weeks pasted, the swelling was getting worse and not going away at night time like it had before. Her belly was getting rounder and her feet were barely squeezing into the sparkly sandals that once fit to perfection.

On the Wednesday before Memorial Day weekend, I had decided that this puffiness was not getting any better and if we didn't do anything soon, her eyes would be swollen shut. I worked the next day, but made an appointment for the first thing in the morning with a different doctor than normal, since Brinlee's primary physician was on vacation. I got a surprise visit at work from Dave and the kids as they were passing time from the appointment and waiting for labs to come back on Brin. Dave mentioned that the doctor thought that whatever was causing Brinlee's issue may have stemmed from her protein level being off, but nothing was definite. I was confused and unfortunately there wasn't much clarity at that time. When I came home from work, Dave had said that Brinlee was prescribed eye drops, that lab was unable to get a good blood sample, and that he didn't know much more than that. Before we put Brinlee to bed that night, we put drops in her eyes and hoped the morning would bring her swelling down.

Unfortunately, her eyes were puffier than ever. She looked like she had been crying all night or punched in both eyes. I panicked, called Dave, then called the clinic to get in with a Pediatrician that I was familiar with. I knew that this Pediatrician wouldn't let us go on to the upcoming long weekend without answers. As I made the phone call to the clinic to get in with the Pediatrician, I had a bit of panic set in as the scheduler told me that if there was an opening with any of the other doctors in the clinic, we would have to see them because their policy is that if the doctor you are trying to get into is booked & also not your primary physician, then they must look at the other doctors' schedules for an opening rather than requesting to be squeezed into the Pediatrician's schedule. I held my breath as she searched for other openings and was relieved to here that everyone else was also booked too, so she could move forward and send an appointment request to the Pediatrician we wanted to see. We were called back within minutes from hanging up with a confirmation time to be seen.

I gathered all 3 kids together and we were quickly on our way to the clinic. Go figure that this would be the day that Dave was gone and working with a friend. When we walked in, some familiar faces who worked at the clinic, came up to us, trying to brainstorm what could possibly be causing the swelling. Every last one of them thought it was allergies. I knew it wasn't allergies. She hadn't itched them at all, was not sneezing, and her nose never drained. The Pediatrician came in and after reviewing the information from the day prier's appointment, he had guessed that her kidneys were to blame. He ordered labs and told me that we would know for sure if it was kidney issues once her results were back, but he was pretty certain that the labs would confirm his thoughts. After he walked out of the room and I let the information set in, I remembered that my maternal grandma & maternal aunt had kidney issues and quickly ran out of the room to let the Ped's doc aware of this information. Right away, he ruled out any relation between her kidney problem and my family's and set my mind at ease.

After about 20 minutes of waiting for the labs to be processed, we had her results. Her diagnosis confirmed... nephrotic syndrome. Her labs were completely the classic look of the syndrome with protein in her urine being 657 (normal value 1-14) and her albumin being 1.1 (normal being at least 3.5). Basically her kidneys were not working properly, to say the least, and her entire body was filling with fluid. The cause is unknown, but likely stemmed from some type of virus. He was 98% certain she had the type of nephrotic syndrome that can be treated and cured. The regimen would include a minimal of 6 weeks of high dose steroids twice daily and antibiotics once daily. Since steroids tend to wipe out immunity, she needed the antibiotics for extra protection. The doctor made it very clear that a fever at any point in the process would need immediate attention and give her a spendy admit ticket to the hospital. We pulled her out of swimming and tried to keep her away from crowded places those first few weeks to give her extra protection.

The true test would come the week after the steroids were started. If her labs showed improvement, we would know that the nephrotic syndrome is the type the the doc was 98% sure that she had and if not, it would mean she would need a kidney biopsy and a change in treatment plans. With lots of prayers, we hoped for the best. I had to work the night before her appointment that would determine her fate, but no matter how tired, I was not missing that appointment. First sign of improvement was her 1 pound weight loss showing us that her kidneys were starting to work better. Then came the true answer. Her blood was drawn and we went home with a plastic baggy on her bottom to collect urine. I arrived home, exhausted, and checked to see if her results were ready to view in the computer. Since she hadn't peed and thus the specimen not sent at that moment, we wouldn't know her protein level and thus would see only the albumin. Her albumin was ready to view. With a groggy mind, I seen that her albumin went from 1.1 to 1.2, barely anything to cheer about. As a matter of fact, I cried myself to sleep. I thought for sure that we would be scheduling a biopsy in the next week. After a few hours of sleep, I awoke to check for her protein lab value and had to do a double take to make sure my eyes weren't deceiving me. Protein level= 45!!!! It was 657 less than one week prior and had dropped significantly! Hooray!!!

Her labs are now back to normal and last week we were able to finally decrease her dose of steroids and discontinue her antibiotics. She is much more irritable than normal and doesn't sleep well from the meds, but we are so grateful that these meds have essentially cleared her body of the nephrotic syndrome. Next week, she will see the Nephrologist and hopefully be discontinued from the the steroids shortly after that. Her cheeks are bigger than ever from the steroids and at a family reunion an older lady thought she was looking pretty "healthy" due to her increased weight appearance. I explained to her that she had chubby cheeks from steroids and she knew then, that healthy may have not been the right words ;)  I know that this bump in the road is nothing compared to what other parents have endured and am so very grateful that we have the medicine available to treat our "baby."