Mar 22, 2024, 11:04:44 AM CDT Mar 26, 2024, 11:52:39 AM CDT

Riley's story: Unclear test results push the urology team to find answers

For two years, Riley was getting UTIs. No one knew why. When she arrived at the Children’s Health Urology Clinic, they promised Riley and her mom answers.

Little girl folding her arms while posing for a picture. Little girl folding her arms while posing for a picture.

Give 8-year-old Riley, a stage to dance on or a sport to play and she'll show up ready to perform. Few challenges intimidate her. The greater the learning curve, the more dedicated Riley will be. But in 2020, when Riley was 4 years old, she was at risk of having to hit pause on her favorite activities when she started wetting her bed and getting urinary tract infections (UTIs) every few weeks.

This came as a surprise to her family because at just two-and-a-half years old, Riley had directed her parents to begin potty training her like her older sister. Now, after repeated rounds of antibiotics failed to stop the infections, Riley's mom was referred to the Pediatric Urology Clinic at Children's Health℠.

"She never mentioned having any pain, even when we asked. But every few weeks she had another UTI. It was a big mystery for us and her pediatrician," Riley's mom Holly says. "The nurse practitioner at our pediatrician's office gave me all the confidence I needed when she told me that if it was her child, she'd go straight to Dr. Nosnik."

The urology team welcomes Riley to the family

Still, Holly didn't know what to expect. She had a 4-year-old who was getting UTIs with fevers that consistently went over 100 degrees. Despite Riley loving the spotlight, she didn't want her daughter to feel body conscious during an exam.

Dr. Israel Nosnik, Riley and Jennifer Ricker at the Children’s Health Urology Clinic.
Dr. Israel Nosnik, Riley and
Jennifer Ricker at the Children's Health
Urology Clinic.

"Any worries I had went out the door when we walked into the clinic. I knew right away that this care team knew how to meet Riley at her level and earn her trust, which meant they had my trust too," she says.

First, the family met Jennifer Ricker, LVN, a pediatric urology nurse.

"Riley was wearing her nervousness," Jennifer says. "I understand our area of care is uncomfortable, but that's not how we roll in our clinic. We're open and fun – we make scary topics normal."

When Israel Nosnik, M.D., Pediatric Urologist at Children's Health, joined them he started with an important question: Who was Riley's favorite Disney princess?

"In this job, it's important to know your Disney princesses. If Moana is the current favorite, we'll talk about how Moana goes to the bathroom, or Elsa. We all go – even princesses," Dr. Nosnik says. "We might even sing a song together."

Dr. Nosnik unpacks Riley's mysterious symptoms

The family came because of Riley's UTIs. But Dr. Nosnik was sure the UTIs were part of a larger medical issue, which meant Riley needed to do a urine flow test.

"The urine flow test evaluates the force and flow of your child's urinary stream. It tells us how long it takes to urinate and the pattern of flow, like if they stop quickly or continue to slowly go little bits at a time," Jennifer says.

This would help her care team understand how Riley's urinary tract muscles were working, identify the possibility of blockage or kidney stones and begin to find the cause of her infections.

"As soon as Riley sat down and started peeing, she made it a game. When you start peeing, a little receipt tape starts coming out of the machine. We named it the 'science potty' and it became her favorite part of our many many future visits," Holly says.

The urine flow test told Dr. Nosnik and Jennifer two things: Riley's urine flow rate had an abnormal pattern, giving them clues about how she was peeing, and it helped them understand if her pelvic floor was relaxing while she peed. Together, this information helped them figure out what was contributing to her recurrent infections.

Next, Dr. Nosnik did a sonogram on Riley's abdomen where he saw some inflammation, but no clear indication of blockage or where the kidneys grew abnormally. With a prescription for medication to help keep the infections from coming back, Dr. Nosnik began forming the next part of his diagnostic plan. He also instructed Holly to call or text him anytime she saw symptoms of an infection starting to appear or if anything about her urine was abnormal.

"The goal of our clinic is to protect the kidneys. If our patients have cloudy or bloody urine or if they get a fever, we need to get in front of them quickly. Because infections can get to the kidneys quickly, which can be very serious," Jennifer says.

Soon, Dr. Nosnik had Riley back in the clinic for a DMSA scan. It meant Riley would need to inject a fluid that would gather in her kidneys, giving Dr. Nosnik a better look at the function, shape and position of her kidneys.

"This was a tough one for Riley – she doesn't like needles. But once they got the IV in, she was a trooper," Holly says. "He could see some scar tissue from the infections, but nothing groundbreaking to give us a diagnosis."

Riley's resilience keeps Dr. Nosnik optimistic

For the next few months, Dr. Nosnik kept a close eye on Riley's condition. Between visits to the clinic and regular tests with the "science potty," he finally determined that the only thing to do was a procedure called voiding cysto-urethrogram (VCUG).

Little girl in hospital bed holding a stuffed animal.The procedure involves placing a catheter in the urethra and a special liquid that can be seen on X-ray machines is injected into the bladder. Then as the bladder drains, an X-ray machine takes rapid images to look for structural differences that might be causing her UTIs.

"Dr. Nosnik isn't going to put a patient under anesthesia unless there's a reason. But we had looked at every test Riley did over and over and we couldn't give her a diagnosis. Even with the medication, she was getting UTIs and had a couple of kidney infections," Jennifer says.

Still – nothing. There were no clear answers as to what was causing Riley's symptoms.

"At this point, we were getting pretty stressed. The preventative UTI medication really helped minimize her infections and their intensity, but whatever was going on was getting to her kidneys. She'd be fine for a few weeks and then pop a random kidney infection," Holly says. "Even though Jennifer and Dr. Nosnik had to tell us again that the results were unclear, I knew they were one step closer to solving this puzzle."

Dr. Nosnik was growing increasingly concerned because Riley's repeated kidney infections were putting the essential function of these organs at risk. It could eventually start to affect her immune system and other organs.

He needed to do another VCUG procedure. And if that didn't work, Riley was going to need a more invasive surgery.

Riley and her care team are finally rocking and rolling

Almost two years after their initial visit, more than a dozen "science potty" tests and some uncomfortable needle pokes, everyone leaned on hope.

"We're going through the same motions as the first procedure and then the radiologist says, ‘I see something. It's on the left side, the right side looks good.' And I leaped out of my chair to hug her," Holly says. "Finally, now we're rocking and rolling. We have an answer. Let's solve this thing."

Riley's official diagnosis was vesicoureteral reflux (VUR) Grade II. The X-ray showed that Riley had a piece of muscle tissue that prevented the urine from fully flowing down to the bladder on her left side.

"When the kidneys produce urine, they send it down small tubes to empty into the bladder," Dr. Nosnik says. "But if something isn't working properly in that process and the urine flows back up, we're going to get an infection – and in Riley's case, repeated infections. It's pretty unusual that it takes so long to find VUR. I don't like not having answers for my patients."

With the diagnosis, Dr. Nosnik made a plan to do a minimally invasive procedure to stop Riley's urine from flowing back up into her kidneys.

"I use a little camera to show me where the problem muscle tissue is and then I put a gel over that tissue that smooths out where it's rough and urine gets caught," Dr. Nosnik says.

Riley has had only a couple of UTIs since the procedure.

"We really felt for this family. Riley had a particularly sneaky case of VUR. It's a fairly common condition, but UTIs and kidney infections can prevent kids from participating in sports and activities. It can also be really embarrassing for kids who lose bladder control on top of being a health risk," Jennifer says.

For Holly, her gratitude for the urology team goes far beyond restoring her child's physical health. She's grateful that Riley never once felt uncomfortable. In fact, she was reassured that Riley was doing okay when a classmate's parent called her because Riley gave her classmate the heads up that she was going to have kidney surgery.

Little girl on a soccer field flexing her muscles."Riley gave her friend the facts – things weren't working right, so Dr. Nosnik and Jennifer were going to fix it. We're now years into this process and this kid is rolling with the punches," Holly says.

Despite the back-and-forth trips to Children's Health, Riley hardly let the long road to a diagnosis slow her down. She brings her moves to every dance team practice and her quick turns to every lacrosse game.

"To have this care team invest so many hours into my little girl and take such thoughtful care of her emotional needs, I'm beyond grateful," Holly says. "Riley has always been fearless and curious; she wants to try new things. Being sick and stuck at home is not for her, and Children's made sure VUR wouldn't hold her back."

Learn more

At Children's Health our Pediatric Urology team has the tools and resources to care for the full range of urologic conditions, while also prioritizing patients social and emotional needs. Learn more about our Pediatric Urology Clinic and care team.

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UTI, urinary tract infection, bacterial disease, infection, kidney, patient story, treatment

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