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Amy knew something was wrong when her ten-year-old daughter Julia started to have frequent bathroom accidents in school.
Then, Julia began experiencing more serious symptoms: She began straining when urinating. Her temperature would shoot up to above 100 degrees and she would vomit violently. Often, she’d be forced to miss school for up to a week.
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Collecting urine samples for a doctor’s appointment, Amy noticed very little urine, even though Julia drank lots of liquids beforehand. Her hunch was that Julia was not emptying her bladder ("voiding") properly.
“It was really scary for us,” says Amy. “I kept telling every doctor and nurse that would listen until someone finally called Children’s." Julia was referred to the Voiding Improvement Program. Once there, pediatric nurse practitioner Pamela Kelly, RN, PNP, identified Julia’s main issues and then referred her to Biofeedback training in Urodynamics. These two initiatives work hand in hand.
The main function of Children’s Urodynamics Program, a hospital-based program within the Department of Urology, is to evaluate how the bladder carries out its two main functions: filling and emptying. The characteristics of how the bladder and sphincter muscles work together can give clues as to why a child may be wet, have a urinary tract infection and/or have urinary tract abnormalities.
When the Parkers arrived at Urodynamics, everything Amy suspected was validated. Julia was not emptying her bladder properly. She was holding in her urine for very long periods of time and had been experiencing urinary tract infections.
Julia was diagnosed with kidney reflux, an abnormal flow of urine from the bladder back into the kidneys that often leads to urinary tract infections. After a successful surgery led by Children's urologist-in-chief Alan B. Retik, MD, Julia stopped getting kidney infections. Yet she continued to get bladder infections due to a dysfunctional voiding pattern which further exacerbates her symptoms and her wetting. This is when she was referred to the VIP, and in turn for Biofeedback training in Urodynamics.
“When Julia is off of her medicine, she gets one urinary tract infection after another,” Amy says. “That’s why we are here.”
As part of her ongoing treatment, Julia visits Urodynamics every two to three weeks. First, her care team scans her bladder, using a painless ultrasonic probe (similar to an ultrasound machine). Next, Julia goes to the bathroom in privacy wearing a special patch, and urinates in a special toilet, which lets her team monitor how much urine flows out and how tightly or loosely she holds her sphincter muscle.
“Some steps are difficult, but everybody here is phenomenal in making Julia feel comfortable,” Amy says. “I ask a lot of questions and they are always responsive. They gave us lots of information before we even started. They tell us exactly what’s going on, and clearly explain to Julia about what she’s supposed to do to void properly.”
With the help of the Urodynamics team, Julia has shown drastic improvement in just a short while. To treat her dysfunctional voiding, the team uses Biofeedback therapy—a series of exercises and techniques that teach patients how to control their sphincter muscle in order to improve flow and be able to empty their bladders.
Julia performs these exercises at home as well. The Biofeedback program also teaches proper toileting techniques, timed voiding schedules and relaxation exercises. And the team helped the Parkers identify certain foods that were affecting Julia’s condition, recommending some helpful changes to her diet.
The Parkers hope that the urodynamics procedures will improve Julia’s voiding to the point when she will no longer require medicine.
“Urodynamics is a very important part of the whole puzzle if your child is going through this,” Amy says. “My advice to other concerned parents is to follow through with the recommendations from Urodynamics and to keep up with the exercises. Keep asking questions and keep pushing. If you get here and follow their advice, you will see significant improvements.”
John had normal toileting habits throughout his early childhood. Yet at the age of seven, he began experiencing urgency, frequency and loss of bladder control. John began voiding more than a dozen times a day, often leading to bathroom accidents in school and on family vacations.
At first, John’s mother assumed the problem was emotional, given his history of Attention Deficit Hyperactivity Disorder. “I knew something was wrong, but at first I thought he was doing this as a way to get attention,” she says.
As John’s situation worsened, Nancy began to suspect another underlying reason and brought John to see area specialists. But the medications they prescribed were not leading to improvements. “We felt like we were reaching a dead end,” Nancy says.
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John was referred to Children’s Department of Urology and underwent a series of tests to determine the cause of the problem. Doctors did not find a urinary tract infection, and his bladder appeared normal. “Everything was in good condition,” Nancy says. “This is when our doctor recommended that we start Biofeedback training in Urodynamics.”
Biofeedback training involves a series of relaxation techniques used by urotherapists to teach patients how to control their sphincter muscle in order to improve their urinary flow.
“It’s as if the connection between brain and bladder was not working properly and John didn’t know how to manage this function,” Nancy says. “The urodynamics team needed to retrain him to void properly: how to hold it in and how to let it out.”
Nurses placed surface electrodes on John’s perineum to detect muscle activity using a special software program that includes fun, yet challenging exercises. Similar to playing a video game, John was challenged to tighten and relax his sphincter muscle in order to successfully launch and land computer-generated rocket ships and to open and close blooming flowers.
“He’s an awesome kid. We worked with his highly competitive personality,” says Cynthia Graziano, RN, of Children's Urodynamics Program. “At first, we challenged him to hold his sphincter in for 15 minutes, then 30 minutes. Later, we would ask him “John, do you realize that you held it for one hour?”
The technique has worked wonders: When he began Biofeedback, John was unable to hold his urine for more than 20 minutes. Today, he is not only able to hold his urine, he is in full control of it all day and night and is only urinating twice a day during school and is on a normal frequency pattern at home, says Nancy. As part of his ongoing therapy, John continues his Biofeedback exercises at home and keeps a voiding diary to monitor his bladder flow.
“They touched our lives in a way more than just curing an illness. They helped him to take control of his body,” says Nancy. “Not only did they enable him to get control of his bladder, they enabled him to feel good about himself.”
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”