A Unique Approach to Helping Kids Cope with Bladder Problems

Bladder problems (anything from daytime or nighttime wetting or surgery to a complex bladder disorder) can be upsetting for a child and their family and can affect a child socially, emotionally and psychologically. Progress can be slow going and hard-won, and often requires maintaining a rigorous bathroom regimen or undergoing complex surgery. It can be disheartening and depressing for a child to struggle so much with a process that seems so easy for other kids.

When the Urology team at Children’s Hospital of Philadelphia notices that a child is exhibiting emotional or behavioral issues due to their bladder problem, they refer the child to in-house pediatric psychologist, Christina Rouse, PsyD. Her goal is to help them live life to the fullest, despite what they’re going through, and not be defined — and consumed — by their medical issues.

Creating a comfortable environment

Rouse and a patient working together on a super-secret bathroom mission. Most children don’t want to acknowledge they have a bladder disorder, let alone talk about it to a stranger. As a result, it can take some patients a while to warm up to Rouse. She often needs to think outside the box to help patients get comfortable. Some ice breaking methods she uses are:

• Super-secret bathroom missions. Rouse and the patient pretend they are spies who need to get to the bathroom without being seen. After a few sessions, children who were fearful of using the bathroom are often eager to meet with Rouse and do the bathroom mission as soon as they arrive to their appointment.
  “Some of these kids grow to hate or fear the bathroom,” says Rouse. “They just need the bathroom to be something that is fun.”
• Role reversal. Rouse lets the patient be the “doctor,” wear her badge/lab coat and control the session.
• Creating songs, stories, poems or movies about care. For one patient, Rouse created a movie poster titled, “One Girl’s Journey from Pull-ups to Real Underwear.”
• Role-playing scenarios. For example, a patient pretends to ask their teacher to use the bathroom to practice how the scenario would play out.
• Drawing what they dislike most (often the toilet) and writing emotions and thoughts on the drawing to process some of the anxiety they are feeling.
• Finding a connection. Staying up to date on video games and pop culture comes in handy when trying to get a patient to open up. One patient didn’t talk for three sessions, and then Rouse mentioned Pokemon.
  “Pokemon Go was our way of connecting,” says Rouse. “Then we were solid. We talked about Pokemon for a bit, and then I said, ‘Should we play Pokemon when you come in for your surgery?’ And that’s how we got to talking about the surgery they were going to have.”
• Build self confidence. If a child is struggling with fear — fear of asking their teacher to use the bathroom during school, fear of being bullied if they wet their pants, fear of their peers knowing they still wear a diaper, or fear of using a catheter — Rouse helps increase the child’s self confidence so their fear doesn’t get in the way of them managing their condition.
• Making it manageable. If a child is struggling to fit their treatment regimen into their schedule, Rouse breaks care recommendations down to smaller goals they can fit in with their daily activities so they can be successful, and then build off that until they are up to what is recommended.

Rally’s experience

When Lindsey and Derek began potty training Rally at age 3, it didn’t go well. Rally suddenly started withholding urine, and when he could no longer hold it, he would have an accident. It got to the point where he was holding his urine for up to 24 hours at a time.

Rally’s primary care physician said she’d never seen a child withhold urine for so long. She referred the family to CHOP’s DOVE Center for Voiding and Bladder Function, which is among the largest, most comprehensive clinics in the United States devoted to pediatric bladder and urinary tract dysfunction.

At Rally’s first appointment with the DOVE Center, the team performed an ultrasound to determine if he had an obstruction or other medical condition. They found that medically, Rally was fine; his bladder issues were the result of anxiety over going to the bathroom.

The DOVE team referred the family to Rouse. She gave them practical behavioral interventions to lessen Rally’s anxiety around potty training and taught Rally different ways he could go to the bathroom. Slowly, Rally started to make progress. First, his parents got him comfortable with going to the bathroom at home; then he became comfortable going at his grandparents’ house; and then came the final frontier: preschool. Now 4, Rally has been fully potty trained for going on four months.

Adam’s experience

When Adam is anxious, he has bathroom issues. It got to the point where he was having about three accidents a week in school. He began meeting with Rouse to address his feelings and make the bathroom less of a cause of anxiety.

Adam’s mom, Kim, was immediately impressed with how Rouse got down on the floor and played with him to connect and make him comfortable. Adam’s anxiety over going to the bathroom has reduced significantly since he began working with Rouse. He has grown to love the super secret bathroom missions because they are silly and make him laugh, which helps him relax. Last year, he had only one accident … the whole year.

“For me as a parent, it’s very helpful to have a partner in helping my kid learn and overcome these challenges,” says Kim. “This is a necessary and amazing service for our community, and we are very grateful for it.”

Tips for parents

Rouse tailors her therapeutic approach to each child, reading the room to determine what the child needs in the moment. She offers the following tips to parents of children struggling with bladder disorders or other chronic conditions.

1. Listen. “A lot of times these kids just need a window where they can share what they need from their parents,” says Rouse. “Kids want to feel that there is someone who understands them. Let them vent and talk it out and be that sounding board for them. Over time, I find the more I listen, the more they open up.
2. Give kids control. “[A child’s] urological concerns are out of their control, and when kids feel out of control, that’s usually when we start to see concerning behavior and anxiety,” says Rouse. “The key is to help them feel in control. In my sessions, they choose where they sit in the room, what topics we talk about, what they share with me and how quickly we move. That control helps them feel like they can handle things.”
3. Be patient. Don’t rush progress. Some kids take multiple sessions to open up about their issues and find the motivation and hope to work toward fixing them.
4. Be honest with your child’s care team and psychological providers. “You are the experts on your kid,” says Rouse. “When parents tell me what their kid likes and how they respond to things, it helps me do a better job.”
5. Reward effort. Rewarding a child for daily cooperation of medical management tasks gives them incentive to continue on that path.