More than 51 miles one way. That’s how far Jessica and Milton Lewis travel each time their 5-year-old son Olin has an appointment with his pediatric nephrology care team.
Residents of Katy, the family eagerly travels across Houston to see UTMB Health’s Dr. Shivaiah Balachandra, nurse practitioner Ashley Moses and the attentive nurses, medical assistants and others tasked with helping manage Olin’s Focal Segmental Glomerular Sclerosis (FSGS).
A rare condition with no known cure, FSGS causes scarring of the filters in the kidneys and ultimately leads to protein being released from the body through the urine – a situation commonly referred to as nephrotic syndrome. If left untreated, it can lead to anemia, high blood pressure, swelling and even kidney failure.
Often presenting without any obvious symptoms, FSGS typically goes undiagnosed for quite some time. Thanks to some minor swelling and an astute allergist, Olin was put on the path to diagnosis quicker than most, with some twists and turns along the way.
“Everything started in early 2021,” said Jessica, Olin’s mom. “We actually took him to an allergy doctor initially because we noticed he had swelling around his face in the mornings when he would wake up. His older brother has allergies, so we just assumed that’s what it was.
“Familiar with our older son’s situation, the doctor wasn’t convinced that’s what was going on with Olin, so they ordered labs to take a closer look at his kidneys, and within 24 hours, Olin was being admitted to the hospital,” she said
Between the testing and the efforts to get Olin’s swelling under control and replenish the protein he had lost, his initial hospitalization lasted about a week.
The family walked away from that experience knowing he for sure had nephrotic syndrome, but the root cause of why (his FSGS) was still unknown.
They also had a new normal that consisted of daily, at-home urine tests for Olin to monitor his protein levels, follow-up appointments with the specialists from the hospital and steroid medications they were to taper each week to find a dosage that would be just right for Olin.
But things weren’t just right.
A fortuitous meeting
A few weeks after a follow-up appointment, Olin’s levels increased on his home tests. Feeling a little frustrated by specialists’ recommendation to come back in six months and a little ignored when she raised concerns, Jessica took Olin to urgent care to see if a urine test would match what they were seeing at home.
That’s when they encountered Ashley, who happened to be working part-time at the clinic near them.
Given her role with Dr. Balachandra and the UTMB Health pediatric nephrology team, Ashley was more than familiar with cases like Olin’s.
“I was curious why they would come in for just a urine test, so I asked,” Ashley said. “And that got us talking about what I do with UTMB.”
After doing some calculations, Ashley realized the dosage of medication Olin was taking was more than two times lower than it should have been.
“After that interaction, I immediately worked to schedule an appointment in their office,” Jessica said.
Given Olin’s background, Dr. Balachandra required a once-a-month follow-up appointment, bringing the family so much peace of mind.
A better path
“It made me feel so much better than the path we had been on,” Jessica said.
The frequent appointments allowed Dr. Balachandra to more closely monitor Olin and his body’s response to the slight adjustments he was making to his medications. It also gave the care team a chance to assess what might be causing Olin’s then-blanket diagnosis of nephrotic syndrome and build a case for ordering a biopsy of the kidney.
That biopsy helped them confirm their suspicions: Olin did, in fact, have FSGS. 
While it wasn’t great news, given the rarity of the condition and the lack of a clear, definitive treatment plan for it, finally knowing what Olin was facing was a step in the right direction.
“By [Dr. Balachandra] pushing for [the biopsy] we got what could be considered an early diagnosis of FSGS,” Jessica said. “From all the reading I’ve been doing on the subject, it was record time going from nephrotic syndrome to narrowing it down to FSGS—and I give all the credit to those monthly visits and follow-ups.”
While knowing what they’re up against is helpful, Olin and the Lewis family aren’t out of the woods yet. They likely never will be.
A lifetime of care
“This is a lifelong condition and, depending on the severity and the cause of it, some of these patients will eventually need a renal transplant,” Ashley said. “The normal plan of action is to just put them on medications to help control the protein in the urine, and in the process it helps protect and prolong the life of the kidneys.”
In addition to the medications, patients with FSGS can mitigate some of the issues by keeping excessive sodium out of their diet—something little Olin already is well-versed at doing.
“He knows how to read a nutrition label and look for the sodium,” Jessica said.
Olin’s family and care team focus on keeping him stable day to day and out of the hospital—something they’ve successfully done outside of one scary ER visit on a summer night in 2023.
“He was vomiting and we honestly didn’t think the FSGS was the cause, but it was. He was relapsing,” Jessica said. “Dr. Balachandra was literally on the phone with the doctors there at 10 on a Monday night. Given where we live, he put us up in the Med Center rather than having us go down there, and between [Dr. Balachandra] and Ashley they were in constant contact with the team caring for us there. It was incredible.”
With that second big scare now months behind them, Olin and his family are back to life as they now know it.
“This is what we do now,” Jessica said. “We’ll forever have checkups, and that’s OK. Right now, it’s all about finding the right concoction so that he can live a normal life and not have to worry about side effects.
“It’s been a scary journey,” she said, “but we’ve leaned on our faith in God and this amazing team, and that’s made it so incredible.”