The consequences of urinary incontinence can be devastating for both the child and the family. There are, however, many things that both parent and child can do to make it manageable.

Incontinence may take several forms. With urge incontinence–an overactive bladder–some children may have a constant urge to urinate and be unable to hold their urine at any time. Other children may have occasional difficulty, such as nocturnal enuresis (bedwetting) or accidents during the day, causing embarrassment and limiting normal activity. Another form of incontinence, called overflow incontinence, is when children feel the need to urinate, but their bladders are unable to voluntarily release the urine.
Initial assessment
John Wiener, MD, is Division Chief of Pediatric Urology and a member of the Department of Surgical Urology at Duke University Medical Center, Durham, NC and a member of the project advisory council of the National Association for Continence. Dr. Wiener explains that bladder control is a function of both brain and muscle activity. No one is truly able to control his or her bladder before the age of 18 months. It requires a certain cognitive ability to sense when the bladder is full, and muscle control to allow an individual to get to the toilet. Children learn to walk and talk before they learn to control their bladders. Girls tend to gain bladder control before boys, and by the age of 3 or 4, almost all children will begin to voice concerns about incontinence. This is a signal that the child is prepared to begin learning self-management techniques. Dr. Wiener stresses that most children will reach this stage eventually.

Though helping their child achieve continence can be frustrating for parents, punishment is never effective and is often harmful. The child may simply have no ability to control the bladder. Cheryle B. Gartley, Founder and President of the Simon Foundation for Continence (an organization dedicated solely to providing help and support for individuals with urinary incontinence) agrees. It s just agony to hear about it–all the punishment in the world is not going to change the situation.

Some disabilities may make achievement of continence problematic; both physical and intellectual limitations can have an effect. Neuromuscular problems such as spasticity, hypotonia, paralysis, balance, coordination, ability to sit and range of motion can all affect muscle usage and control. Severe or profound mental retardation will likely constrain a person s ability to understand and manage the process. It is certainly worthwhile for parents and children to try to achieve continence, using the methods discussed below. However, it is important for parents to accept that their children s incontinence may be permanent. They then should teach their children that their disorders cause their incontinence and they are not at fault.

Helping the child build self-esteem
Incontinence in any child will challenge his or her self-esteem, and this can be a particularly significant issue for a child with a disability. The challenge begins when the child becomes aware that other children do not have this problem. Children may interpret their lack of bladder control as still being babies, and may be taunted or teased by their classmates and friends.

Even young children, though, can understand the idea of the bladder as a muscle that contracts and relaxes, as when they make a fist; Gartley recommends referring to the bladder as a muscle that can misbehave. What the child has–and so do a lot of other people, including grown ups–is a muscle that misbehaves. This lessens some of the perception of all my friends are grown-up kids now, but I m still a baby.

A positive attitude in a child results from a positive attitude in the parent. Parents worrying too much and putting too much focus on the child s incontinence is detrimental. They shouldn t focus on it so much that it interferes with the child having an otherwise normal childhood, says Dr. Wiener. Fretting about it is not going to make it better. Let the child be a child. Do things to help the child s self-esteem. For example, if it makes a child feel better being in (an underwear-like product such as GoodNites) Pull-Ups underpants, and it helps his or her self-esteem, that s great.

First steps
Wiener suggests that, to the extent possible, parents introduce a child with a disability or condition that causes incontinence to a potty just as they would any other child. Get the child on the potty, have him spend time on the potty, help her understand what it is used for, and teach about normal bathroom habits. This introduces the child to regular toileting. Engaging the child in the effort is important–obviously, if the child has no interest, there s a low likelihood of success. And if this is impossible, don t push it, thereby setting the child up for failure.

Setting a schedule
Dealing with incontinence is often a matter of finding out what routine the child needs to follow, and then helping him or her learn to follow it. We have ways of doing this (managing incontinence) that do not require surgery. Not everybody requires (intermittent) catheterization. There are so many simple measures that work.

The first thing Dr. Wiener teaches children with incontinence is scheduled voiding. He describes his approach with an example. Think of your bladder as a bucket. Your kidneys are making urine continuously, filling up your bladder. What happens if you try to walk around with a full bucket? Children usually respond, It s going to spill. Agreeing with them, Dr. Wiener suggests, If you empty the bucket before it gets full, then you re less likely to spill.

Dr. Wiener has found that some children benefit from keeping a chart by the toilet and checking off each time they go. He adds, If they can keep on schedule through the day, they receive a star or a sticker. If they can string together five to seven successful days, there is a reward (such as a new toy or video). Some call it bribery, but we call it positive reinforcement. The most important thing is to get the child on schedule. It is important to remember that this process is very personal. Children may be embarrassed if a parent or other adult keeps asking–in the presence of others–if they need to use the bathroom. Privacy is important.

Another technique for managing incontinence is Kegel (or pelvic-floor) exercises. Dr. Wiener explains that continence is a combination of the bladder staying full and the pelvic floor muscles holding urine in. Voiding occurs when the pelvic floor muscles relax and the bladder contracts. He continues, It s hard to teach children how to contract and relax their pelvic-floor muscles, but it s often necessary. Sometimes this is taught using biofeedback by putting a sensor on the perineum, the external surface of the tendon that runs between the anus and the genitals. The sensor will pick up the pelvic-floor muscle contracting and relaxing and depict it on a monitor so that children see and can learn how to contract that muscle.

Sometimes, Wiener reports, anticholinergic drugs are prescribed. They relax the bladder muscle so it is less likely to contract and empty spontaneously. The bladder can hold more but the urge to urinate is reduced, possibly prolonging the time between voidings. The common side effects of these drugs are constipation, dry mouth, and flushing of the skin. These drugs may also decrease sweating, thereby reducing heat tolerance.

Self-catheterization
Some children have overflow incontinence; that is, their bladders do not empty. If this is the case, consult your doctor to see if self-catheterization, or use a catheter intermittently (usually every four to six hours) to empty their bladders is an option.

As children enter the teen years, they do not always do what is best for good health. We often have trouble in teenagers who have been taught self-catheterization, Dr. Wiener reports. Many of these patients have normal cognition and are in school. The kids who can walk have the hardest time because they look ‘normal, but their bladders still do not work properly. So they try to make the problem go away by stopping catheterization. As some children try to be more ‘normal, they may often try to ignore or just deny their problem. They don t follow the regimen they are supposed to.

When dealing with bedwetting, get the child s input from as early in life as possible so that incontinence management is a normal part of life. Frank and open discussion about urination from the early years on can help avoid creating an atmosphere of embarrassment, either for the child or the parent. Also, the use of disposable underpants such as GoodNites is a great way to help both you and your child cope with the issue.

by Gale Jurasek

Resources
Both of these organizations can refer parents and professionals to continence support groups.

The Simon Foundation for Continence
Call 800-23-SIMON (800-237-4666) for a free information packet
The Simon Foundation also offers many resources, including their book Managing Incontinence: A Guide to Living With Loss of Bladder Control.
Web site: www.simonfoundation.org
E-mail: simoninfo@simonfoundation.org

The National Association for Continence
(800) 252-3337
Web site: http://www.nafc.org
E-mail: lloudon@nafc.org