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There are many ways you can help children and their families get the care they need.
by Scott Howe
“He was 8 years old and still wearing diapers. We knew he had a problem.” – Mother of a boy with a bedwetting issue
“It really wasn't difficult to talk about her wetting as she knew something was wrong. We concentrated on making her comfortable and assuring her all would be fine.” – Mother of a young girl with a wetting problem
Urinary incontinence, otherwise known as “enuresis” or “wetting,” is fairly common, often embarrassing and sometimes difficult to talk about it. Of children 6 to 7, about 20 percent of boys and 17 percent of girls have some problem with daytime or nighttime wetting. Still, many kids are reluctant to talk about wetting with parents, friends and teachers. Parents themselves often have a hard time confronting the issue.
The Voiding Improvement Program (VIP) at Boston Children’s Hospital uses noninvasive methods to help children overcome incontinence and other urinary issues, such as urinary tract infections. Treatments can include biofeedback training, Reiki therapy, behavioral therapy and referral for acupuncture. The program’s director, Carlos Estrada, MD, believes that open communication is the essential first step in addressing a wetting issue.
“Kids have a hard time talking about their wetting problems for one obvious reason: It’s embarrassing,” he says. Over time, that embarrassment can build and build. In fact, Estrada explains, for some boys and girls, urinary incontinence “becomes a focal point for a family, and the negative attention results in kids turning inward.”
Adding to the embarrassment are feelings of helplessness. Estrada says that wetting the bed at home or having an accident at school or on the playground can trigger these feelings and cause kids to postpone voiding. “Holding too long can lead to an overactive bladder and possibly more serious problems,” Estrada reports.
Parents can compound the problem by failing to discuss wetting with their children. Some fear that they will further embarrass their child, so they ignore urinary issues, hoping they will simply go away. What’s more, kids with wetting issues feel worse and worse over time, so it’s important to talk about them early. “As they get older,” Estrada explains, “the expectation becomes greater that this problem should be gone by now.”
“Positive communication is essential to creating a feeling of comfort and to creating a plan to deal with enureris,” Estrada says. He offers a few communication tips:
“Tell your kids that the condition is very common,” he says. “It’s important for children to know that there is nothing unusual about it and that the problem is not their fault.”
Estrada urges parents to “be proactive and bring up the problem with their pediatrician during a regular check-up.” He explains that many PCPs may simply not have time to fully cover the condition during a routine visit. “VIP appointments for new patients take 45 minutes to an hour,” he says. “A PCP usually doesn’t have that much time to talk about wetting.”
Once the problem has been discussed and a treatment plan has been created, kids need to be thoroughly involved in the process. At the VIP, Estrada says, “kids know everything.” That’s because “unless they are fully engaged and motivated, they’re not going to do what’s necessary to overcome their problem.”
Also, kids need to know that the problem can be solved, usually through noninvasive methods. Many children, Estrada reports, are fearful that treatment for wetting could be painful or involve surgery. “We have a set of tools to help children fix their problem and put it behind them,” he states, and most of those tools are noninvasive and painless.
Positive reinforcement is essential. At the VIP, when kids complete goals and hit milestones in their treatment, there are celebrations, certificates, even graduation ceremonies. “Our program is very goal oriented,” Estrada explains. “The vast majority of kids respond well to that, and they respond poorly to the opposite,” he says.
The girl’s mother quoted above worked with the VIP and saw first-hand the importance of positive reinforcement: “Watching our daughter do everything asked of her and showing no results for a while was tough. But when small improvements began to arrive, the celebrations with staff were wonderful. We began to look forward to trips to Boston Children’s. In a way, we were sad when our visits began to be less frequent because we enjoyed our time with the staff and looked forward to the stories we shared.”
Turning a negative into a positive through shared goals and constant encouragement are the hallmarks of the VIP program. But ending a wetting problem starts with communication. As Estrada says: “Don’t be afraid to talk about it.”
The VIP is available at Boston Children’s Hospital locations in Boston, Peabody, Waltham and Weymouth. Call us for more information at 617-355-7796 or visit our website at bostonchildrens.org/vip
Amy knew something was wrong when her 10-year-old daughter Julia began having frequent bathroom accidents in school and began straining when urinating.
Then, Julia began experiencing more serious symptoms. Her temperature would shoot up to above 100 degrees and she would vomit violently. Julia would often be forced to miss school for up to a week until her medicine kicked in.
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, 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 Boston 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 Boston 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 of Wayland had normal toileting habits throughout his early childhood.
Yet at the age of 7, John began experiencing loss of bladder control, urgency and frequency. He began voiding more than a dozen times a day, often leading to bathroom accidents while in school and on family vacations.
At first, John’s mother assumed the problem was emotional as opposed to urological, given his history of attention-deficit hyperactivity disorder (ADHD). “I knew something was wrong, but I first thought he was doing this out of rebellion or 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 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.”
The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”