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.
John was referred to Boston 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 Boston Children's Urodynamics. “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.”