The Burden of Waiting: Changing the Narrative of Bedwetting

Whew, congratulations, your 2.5 year old just started to go to the bathroom in the potty. What an exciting milestone! It’s likely a similar feeling to when they started sitting up on their own, feeding themselves, or walking on their own. You have a sense of pride, accomplishment, and also relief. They’re becoming more independent, checking the boxes of developmental milestones, and you get the sense of your own two hands and time being more of your own once again. And then there’s the financial burden of diapers, that sense of one major cost of having young children being lifted (for this child at least).

Over the next few months, they continue to stay dry during the day and have fully transitioned to underwear up until bedtime. You know the nighttime dryness will follow in the next few months, and you expect to start getting at least a few scattered mornings with a dry diaper, but it never rolls around.

Then their 3rd birthday passes. Maybe you mention it to the pediatrician, maybe you don’t. It’s still age appropriate to not be fully continent at night. The same thing at 4 years old. Same narrative, still normal. Maybe you start pressing the pediatrician. They may suggest stopping fluids before bed, but they are following the internationally set guidelines. Unless paired with other obvious concerns, bedwetting (enuresis as it is known in the medical world) doesn’t need to be addressed until age 6. Twice as long as it took your child to get daytime control.

The Impact and Incidence of Bedwetting

This whole time anticipation (or frustration, worry, …) is building. Parenting is hard in this day and age, and comparison to other kids is easier than ever. Plus, kids can often sense their parent’s disappointment, even if the parent knows and expresses that the child has no control over it.

It may be hard for the child to not feel they are doing something wrong which impacts their self-esteem. Add the possibility of peers finding out when they’re at the age where building strong peer relationships is a typical social milestone. Maybe they spent the night at their cousin’s house and wet their sleeping bag, or maybe they had a friend over and the box of big kid pull ups was sitting out in the middle of their bedroom.  How is a child supposed to react to the question, “You still wear diapers?”

This is around when you start to hear the statistics on incidence of bedwetting.  About 15% of 5-year-olds wet the bed. While roughly 15% of these children outgrow it naturally each year, it still leaves about 5% of kids wetting at age 10, and around 1% to 2% continuing into adolescence and adulthood.  So out of 100 young adults, 2 may still wet the bed? That may have a large impact on their choice of school, living situation, or livelihood.

Taking an Active Approach

What’s one of the most common questions kids are asked about themselves in elementary school?

What do you want to be when you grow up?

A teacher, a doctor, a firefighter, a physical therapist (sorry I had to…), a marine biologist, a professional athlete!  We let children have their dreams and then, in the ideal situation, we encourage them to take action and lay out the tools to make their dreams a reality.  We don’t tell them they have to passively wait and see if a football contract falls in their lap. So why are we doing this with bedwetting when there are tools available?  Let’s unlock their full potential!

This is a good opportunity to teach children to take an active role in their health and future. The age and cognitive abilities of the child will determine what level of decision making they get in this case, but letting them see and hear you taking actions on their behalf is a teachable moment for a critical life skill: asking for help (especially as it relates to their health).

Start with the primary care provider. Express your concerns and state your goals.

If you’re met with the “wait and see” after age 5 (outdated advice according to the International Children’s Continence Society) ask what can be done to take a more active approach.

This should drive more curiosity and investigation. If it doesn’t, get a clear answer why and decide if a second opinion is needed.

Differential Diagnosis

Medically, what typically happens first is ruling out other problems or comorbidities  (differential diagnosis) that may be related to bedwetting. For the sake of this blog, we are discussing what is called primary monosymptomatic enuresis, meaning they never achieved dry nights with potty training and there are no daytime urinary symptoms. For simplicity these include (but are not limited to):

• Constipation
• Urinary tract infections (UTIs)
• Disordered breathing during sleep (such as sleep apnea)
• Neurological disorders (such as tethered spinal cord)
• Neuropsychiatric conditions (such as ADHD)

The physician may start by asking a series of questions, make observations, refer for further testing or refer to another provider. This should then prompt treatments of these conditions, followed by periods of observation if improvements in bedwetting are seen. Sometimes the improvements are seen right away, sometimes they take longer. And sometimes there’s more than one concern that may need to be addressed. I won’t take the time to discuss each of these concerns individually, however, I would be doing a disservice if I do not highlight one of the common offenders, constipation.

In the pelvis, the bladder and rectum are neighbors, and imagine if your neighboring house or apartment started growing in size and encroaching on your space, mobility or ability to communicate with the world around you. It would be frustrating, may cause you to respond in irrational ways, and your cries may be drowned out. Excessive rectal filling may do just that, push on the bladder, limit its ability to expand and move, and may place added force on its nerves. This may lead to involuntary bladder contractions or dull the sensation of bladder filling, both of which may lead to incontinence. And the brain may never find out. I’ll touch on this again later as this is an important concept in how we look at bedwetting as a whole.

If constipation is diagnosed and treated, it can often take time to resolve and we have to give the bladder additional time to reduce its hypervigilance. This is why I am an advocate of ruling out constipation with a fine-toothed comb at the start. As many of us pediatric pelvic health providers say “You’re constipated until proven innocent.” There is nothing more frustrating for everyone involved than to go through various forms of routine changes, bladder retraining, bedwetting alarms, and medications only to find out later that the child was constipated all along.

The common signs of constipation, such as straining, pain, hard, lumpy, difficult to pass and/or infrequent stools, are not always present or the child does not have the skills to identify these things as a problem. A 2011 Dutch study of 8 to 18 year-old children found that of those that were found to have clinically diagnosed constipation, 64% of the children reported “normal” stool frequencies, and 49% reported “normal” stool consistencies (texture). This suggests that a child’s report alone is not adequate to rule this out as a problem. A detailed bowel diary (with adult oversight), a rectal exam, an ultrasound, and even better, an x-ray, are often recommended for a doctor to diagnose constipation. Make sure your child’s healthcare provider is taking a solid look at this possibility before ruling it out.

Genetics and Hormones

Now what? If and when all of these other reasons are ruled out we next look at genetic links.  A child with 1 parent with a history of bedwetting has a 44% chance of following in their footsteps, and that jumps to 77% if both parents had similar histories.

So what are genetics affecting? Although I often wonder if genetics may play a factor in some of the reasons discussed in the previous section, it is thought to come down to hormone regulation. Specifically antidiuretic hormone (vasopressin). This hormone is your body’s way of communicating to your kidneys to produce less urine to regulate vitals like blood pressure.  Depending on the quality of your sleep (which is also one of the reasons breathing concerns play a role in bedwetting), your body should release more of this hormone which slows kidney function and urine production down. This is why it is normal to be able to sleep 8+ hours a night without waking, you ideally produce less urine. This, along with tendencies towards a more infantile response of involuntary bladder contractions with bladder filling before the sensation of urge hits the brain, is why a child wets the bed.

And it happens in adults as well. Sometimes it manifests as true bedwetting, bladder emptying without awareness. Sometimes it manifests as frequent nighttime voiding, or nocturia. As many adults have more difficulty with sleep as they age, their body stays at daytime urine production levels which causes them to wake up multiple times a night.

Bedwetting is Not Their Fault

This is why kids may sleep through this whole process. Their bladder contracts involuntarily before the sensation of urge reaches their brain or is not loud enough to wake them up.

Then add the absorbency of a pull up, wicking away the fluid before it really reaches the skin.  Not even the wetness wakes them up.

So the brain may not be aware of the disturbance at all. So as frustrating as bedwetting is, it is vitally important to understand that it is not their fault, this is not a choice. Lift the blame off of the child and let’s take this opportunity to investigate what could be at play. Approach this with curiosity and teach the child to do the same. Hmm, why is the bladder acting this way?

Pediatric Pelvic Therapy Referrals

So where might pediatric pelvic therapists intervene, you ask? Most of my patients with bedwetting concerns come from families that find me on their own after getting the “wait and see” or “they’ll grow out of it.”  It may be a Google search or also could be when an adult family member who received pelvic therapy themselves asked if there was similar treatment for their kids.

Most of the kids I work with who are referred directly by a physician are sent because of a bowel concern, a day time urinary concern, or a pelvic or abdominal pain concern. I do not often get a direct referral from a physician specifically for bedwetting unless they already know that constipation is the driving factor.

I would love to have more physicians collaborate to help with bedwetting. And when I start seeing a patient, if not already involved, I often want a physician as a member of the team within the first 4-6 weeks of treatment. Yes in my state of California it is law (physician involvement in therapy plan of care within 12 visits or 45 days), but even if it wasn’t the case it is essential to ensure my patients have proper medical oversight, screening and can be on hand to order tests or make other referrals. In the case of bedwetting, this is usually a pediatrician or urologist, but can be other specialists depending on the situation.

Early Therapy Visits

This type of start allows the team to put on our detective hats. We run through history and start one of the most important aspects of the care, making the child an equal member of the team. This involves education on their body processes, learning about their body sensations (interoception), and discussing age appropriate responses and management.

Then the team agrees on early strategies to address, these are often changes in habits or schedules, urotherapy as it is called. This may be limiting fluid intake before bed, working on timed voids during the day and right before bedtime. A log or diary may be used to track the child’s urinary (and bowel) habits so that recommendations can be made and not just blanket advice.

This should already be what the physician recommended as this is standard protocol, and if so, we discuss if there was follow through. Sometimes too many recommendations come too fast and are too general and families need help implementing them in a reasonable way. This is a perfect role for rehab therapists to help with since we have more time to help make these recommendations easier to digest and implement, and we have more frequent follow up than a physician gets. I often start with once a week.

Then we start talking about bowel habits and will add recommendations as needed if a bowel component is suspected. These may include working on toileting posture, planned toilet sits, and/or conservative measures to stimulate bowel movements.

An Element of Play

My pediatric sessions (and even some of my adult sessions) almost always involve an element of physical play which has many benefits, even if not always obvious to the parents. And I often get asked, what is this helping? So, this is not a complete list.

It can get some wiggles out after a long drive to see me or after a long day at school.

It can help build trust with the child and add an element of fun. I want them to be motivated to have another therapy session and not dread that my presence means we just talk about sensitive topics. We get to celebrate the amazing things their body can do!

Play can also help to regulate the sensory system which makes the child more receptive to the more subtle pelvic floor work.

And then, I get to observe…

Observe how they breathe…Is their mouth open the whole time? Are they holding their breath? Do they breathe with their chest, belly, ribs or all of the above?

Observe their postural control. Can they sit tall for a period of time? Do they W sit? Can they play on all fours or do they prefer to stand? Are they losing balance?

Observe their hips. Can they hinge at the hips? Can they sit criss-cross? Do they naturally perform a deep squat in play or are they quick to drop down into kneeling or choose to stand and stoop over?

Observe their feet. Do they hold their toes curled? Do they walk on their toes?

Observe their core. What happens when they lift their legs off the ground when lying on their back? Can they push or pull heavy objects?

You won’t believe the things a pelvic therapist can start to hypothesize about someone’s bladder and bowel control, just by watching how they move and function around their environment and not even looking at or touching it directly.

The Pelvic Floor

Did you notice that pelvic floor weakness was not one of the common causes of bedwetting?  And pelvic floor strengthening, or Kegels, are not often given as a direct treatment for this concern.

Remember that bedwetting is often an involuntary reaction of the bladder without much input from the brain. So unlike during the day when we get a strong sense of urge and are able to contract our muscles to buy more time to get to the bathroom, we do not get to make that choice when we are asleep.

There is also an important neurological loop that actually turns the pelvic floor off when the bladder muscle contracts. This loop allows for optimal bladder emptying without resistance from the muscles. So if we are not conscious enough to stop the process before it starts, it is going to happen, regardless of pelvic floor strength.

That doesn’t mean that we do not address the pelvic floor, it’s just not for reasons that you may think. With concerns for constipation, UTIs and, believe it or not, airway concerns too, a pelvic floor aspect is often involved. This is where skill as a pelvic rehabilitation provider comes into play.  Remember all the play we did and observations I may have made? These help to drive my hypotheses about the coordination of the pelvic floor.

For example, a child who breathes more into their chest or struggles to come into a deep squat may have difficulty relaxing their pelvic floor or assuming an ideal toileting position contributing to constipation and UTIs.

The focus is often about building awareness of the muscles and basic understanding of how and when to contract and relax them relating to ideal bowel and bladder health.

Unlike in standard adult pelvic therapy, with children it is not standard of practice to perform internal (rectal or vaginal) pelvic floor palpation in children. It doesn’t mean that it is never done, but it should be the last resort to other forms of feedback such as watching their bottom in the mirror, using rehabilitative ultrasound imaging, and surface electromyography (sEMG).

My favorite is to use mirror feedback since we cannot see our pelvic floor work like we can see our arms and our legs moving. Watching their own body decreases fear or anxiety of an area that is often taught to be private and sometimes dirty.

The ultrasound is another favorite, because we can see a lot just by looking through the belly, no undressing required for those that are not comfortable with that. It also gives us a look at the rectum, so for those kiddos that do not have obvious constipation problems, seeing a large mass of stool sitting behind the bladder is great feedback to take back to the physician to take a deeper dive into a bowel component.

Lots of kids enjoy sEMG (often just referred to as “biofeedback”), which you can think of like an EKG to the pelvic floor. It involves placing small sticker sensors on the bottom, which connect to a computer and show a moving graph or picture animation of the pelvic floor moving into an excited or contracted state and into a relaxed state. At the time of this blog, I do not have access to it, however when I have used it in the past, I explain it to the kids, that you get to play a video game with your bottom, which often piques their interest.

And there are other ways we can work on the pelvic floor, so even if these are not preferred by the patient or parents, there are other options to explore.

And remember, this is more about the child learning awareness of the muscles, learning how to coordinate them, and linking this awareness to bladder and bowel control as well as other body movements.

Overnight Training

So what happens if we clear for constipation, UTI’s, airway, etc and bedwetting continues?

This is where the standard of care often will recommend bedwetting alarms which will alert the child or parent when the child is urinating. Alarms are considered the gold standard designed to retrain the brain via conditioning.  The alarm triggers at the first drop of moisture, ideally waking the brain right at the moment of bladder contraction. Over time, the brain anticipates the alarm and begins to wake up just before the contraction happens, or sends an inhibitory signal to keep the bladder relaxed.

Despite the evidence and mention in medical protocols, many families come to me after these alarms have presumably “failed.” I believe it is because the previous steps, most often clearing for or adequately treating constipation, were skipped.

And once this is cleared, I may recommend the Dry Morning Program. This involves a specially designed schedule waking the child before their bladder gets to the point of emptying. It is often found that bedwetting happens at roughly the same time, so after a period of investigation parents are taught how to gently wake their child to go to the bathroom and urinate. If successful for a certain length of time, the wake up time is progressively moved with the goal to phase it out. This program helps to break this pattern of bladder filling and involuntarily contracting running on auto pilot.

Both this and an alarm can be hard on the parents, but they are temporary and worth trying.  Even if I’m not seeing the patient on a weekly basis, I make sure I am available to answer questions and advise on the schedule to guide families through the process.

Medication

Medication is usually the last resort. However it should not be looked at as defeat.  This is often needed in those cases where it is simply genetics and it is the waiting game.

The medication used is often Desmopressin and it can be a solution to helping your child participate in activities like sleepovers and camps with confidence. Some families choose to use the medications routinely to curb the problem all together, and some choose to use it on an as needed basis (for specific events). This is a conversation that needs to happen with the physician.

And if used routinely, there should be phases of tapering off to see if it is still needed.

Conclusion

Bedwetting is an inconvenience and can be embarrassing. It can have large impacts on a child’s self esteem and social relationships so it is absolutely worth using a variety of tools to investigate and address several potential aspects we can control.

At the end of the day they are the star of the show. Remember, not everything is in their control, but it is how they read and respond to challenges that make the biggest impact on the outcome.

If we were to treat it like a sports team…

Other close family or friends (in the know) are cheerleaders.  Make sure they feel supported in their environment.  Do not let people in that are critical of the child, you or the rest of the team.

The pelvic PTs/OTs, and other health professionals are like the coaching staff.  The boots on the ground with the athletes. Spend time developing different aspects of the team’s plan and advising on certain plays on a routine basis.  There may only be one assistant coach, and sometimes there needs to be multiple types of coaches and coordinators.

The physician is the head coach. They position the athletes in the appropriate level of play, make sure everyone has the resources to do their jobs, and helps to make decisions on who are the best coaches for the job.

You, the parent/caregiver are the manager. Ultimately you get to decide what direction the team is going in, aligning with your beliefs and values, hopefully armed with the best coaching staff.

It may not be a perfect analogy, I’m sure you could rearrange some of the roles, but it still conveys the same message.

Build a team with the child at the center, everyone with one common, reasonable outcome.  Don’t take a passive approach to bedwetting. Let’s do this!

References

1. Arda, E., Cakiroglu, B., & Thomas, D. T. (2016). Primary nocturnal enuresis: A review. Nephro-Urology Monthly, 8(4), e35809. https://doi.org/10.5812/numonthly.35809
2. Nevéus, T., Fonseca, E., Franco, I., Kawauchi, A., Kovacevic, L., Nieuwhof-Leppink, A., Raes, A., Tekgül, S., Yang, S. S., & Rittig, S. (2020). Management and treatment of nocturnal enuresis—an updated standardization document from the International Children’s Continence Society. Journal of Pediatric Urology, 16(1), 10-19. https://doi.org/10.1016/j.jpurol.2019.12.020
3. Timmerman, M. E. W., Trzpis, M., & Broens, P. M. A. (2018). The problem of defecation disorders in children is underestimated and easily goes unrecognized: A cross-sectional study. European Journal of Pediatrics, 178(1), 33-39. https://doi.org/10.1007/s00431-018-3243-6