Urotherapy Book

Urotherapy Book A Case-Based Approach ESPU, ESPU-N, ICCS 2022 ANKA NIEUWHOF-LEPPINK, JENS LARSSON, GUNDELA HOLMDAHL, ANJU GOYAL ILLUSTRATIONS: DIMME VAN DER HOUT

1 Table of Contents Foreword 2 Section 1 Introduction 3 1. Preface 3 2. Learning Objectives 4 Section 2 General aspects 6 1. Functional bowel and bladder dysfunction 6 2. Urotherapy and urotherapists7 3. Team approach 8 4. Assessment and diagnosis 9 5. Therapeutic Interventions 11 6. Evaluation of treatment 14 Section 3. Cases 16 CASE 1 Constipation treatment in a 7 year old boy 16 Case 2 Overactive bladder and Enuresis treatment in a 9 year old boy 24 Case 3 Dysfunctional voiding treatment in a 10 year old girl38 Case 4 Underactive bladder treatment in a 14 year old girl 50 Case 5: Giggle incontinence and treatment in a 10 year old girl 57 References 66 Useful websites 71

2 Foreword It is a great pleasure and an honour to write a foreword to the Urotherapy web book. This book has been completely conceived and realized within the ESPU thanks to the efforts of the Authors belonging to the ESPU Nurses Group and to the Educational Committee. Urotherapy is an important therapeutic modality and a key-stone in the treatment of functional bladder disorders, but it requires expert and dedicated personnel, with specific training and motivations. Unfortunately, even in Europe, urotherapy is not so widespread utilized as it would be necessary and desirable, because of the lack of specialized Urotherapists and lack of resources. These reasons have prompted us to promote this web book, in the hope that it may help in diffusion of the knowledge and practice of these techniques and procedures but, specially it will help in the understanding of the functional mechanisms underlying the onset of lower urinary tract dysfunctions. This book is a very practical one, based on the description and discussion of typical cases of LUT dysfunctions and I am sure that it will soon become popular among our members who will find it on our website. Once again ESPU has demonstrated to be an active Society with a special interest in promoting and diffusing all the aspects of Paediatric Urological knowledge. I wish to thank again, also on behalf of ESPU Members, the Authors for their tremendous efforts and dedicated work. Emilio Merlini F.E.A.P.U. President of ESPU, 2022- September

3 Section 1 Introduction 1. Preface Urotherapy is the first line treatment for functional bladder and bowel problems like daytime urinary incontinence, nocturnal enuresis, functional constipation, and faecal incontinence. The treatment is non-invasive and focuses on re-education and rehabilitation for bladder and bowel management. Urotherapy aims to reach the normalization of the voiding and bowel pattern and to prevent further functional disturbances by repeated training. Standard urotherapy emphasizes the education of the family and the child and suggests simple lifestyle changes as treatment. Such lifestyle changes include how much fluid to drink throughout the day and how often the child should be urinating. Urotherapy also aims to teach the child the correct way to urinate i.e., posture and muscle contractions. Regular follow-ups alongside a bladder diary are then used over a period of months as the child implements the treatment advice. Bowel problems can result in lower urinary tract dysfunction. Bladder-bowel problems can be complex, and the causes can be intertwined, making treatment plans challenging. Problems such as constipation and any urinary tract infections (TI) are addressed at the start of the treatment plan. The endpoint of urotherapy treatment is considered to be when both parents and child are sufficiently satisfied with the progress and healthcare professionals are satisfied that any intake and voiding factors that can affect bowel and bladder function have been addressed. If standard urotherapy doesn’t work, then specific urotherapy is recommended. Specific urotherapy focuses on intensive training of the child whereby three learning elements, how to void, when to void and how often to void, are essential to teach adequate voiding behaviour. Specific urotherapy involves multidisciplinary elements, like psychological support and behavioural modification, biofeedback by the use of a flow meter and/or physiotherapy.

4 Urotherapy is regarded as a ‘specialization’ and can be performed by health care professionals like a nurse, physiotherapist, or psychologist, who has had specific training. Due to multifactorial aetiology of the condition, the professional is expected to provide care for these children with intertwined somatic, psychosocial, and behavioural problems. Important indicator of lower health related quality of life is the severity of incontinence and/or comorbidities, like social and emotional problems. 4. This book contains proven steps and strategies on how to correctly apply the principles of urotherapy. Using clinical cases, we aim to present the realities of practice. We hope that this will facilitate urotherapists including nurses and physiotherapists to master essential information on bladder and bowel problems, diagnostics and therapeutic tools including biofeedback, behavioural interventions, and pharmacologic therapy. Each of the 5 cases present the story of a unique child with one or several conditions related to bladder and/or bowel. The cases cover school-age children with different backgrounds and conditions of functional bladder disturbances, like constipation, overactive bladder, dysfunctional voiding, giggle incontinence, underactive bladder and bedwetting, as well as a variety of aspects of urotherapy assessment, diagnosis, and intervention. The text contains hyperlinks providing useable materials, such as a bladder diary, drawings, explanations and training instructions. Assessment, diagnostics and the urotherapy elements are emphasized throughout each case, helping to promote clinical decision-making. 2. Learning Objectives Topics addressed: - Diagnostics: how to assess the child and prioritize care appropriately. How to formulate a diagnosis/sub-diagnosis based on the medical and psychosocial history - Diagnostics tools: how to use flowmetry, bladder diary, ultrasound and questionnaires

5 - Patient Teaching: how to educate the child and parents in an effective way - Patient: how to recognize and address the child’s/parents’ concern. Which questions are helpful in clinical reasoning and making the correct diagnosis? - Behavioural problems in children with incontinence. - How to formulate – a treatment plan based on current best evidence, professional knowledge and the value(s) and preferences of the child and its environment - What are the urotherapeutic elements, and how to use therapeutic tools depending on the (sub)diagnosis; flowmetry, bladder diary, biofeedback, pelvic floor training, - How is cognitive-behavioural psychotherapy embedded in the treatment plan? - The behavioural therapeutic techniques: what are the pitfalls and success in treatment, how do you motivate and support the child. - If the treatment is not successful, what are the most obvious causes and what the next steps are. - The role of the Urotherapist.

6 Section 2 General Aspects This book uses the globally accepted ESPU-ICCS terminology 1-4 We briefly discuss terminology, the aspects of diagnostics, the role of the urotherapist and the rationale of treatment plans, below. 1. Functional Bowel and Bladder Dysfunction Bladder and Bowel Dysfunction (BBD) is an umbrella term that encompasses lower urinary tract dysfunction (LUTD) and bowel dysfunction. LUTD symptoms are classified according to their relation to the storage and/or voiding phase of bladder function. Lower urinary tract symptoms (LUTS) can manifest as urgency and frequency with or without incontinence, or recurrent UTI. The possible diagnoses in children with LUTS are overactive bladder, dysfunctional voiding, underactive bladder, voiding postponement, stress incontinence, giggle incontinence, vesicovaginal reflux incontinence and enuresis. There are several subtypes of daytime incontinence, (see table 1) which are classified according to their relation to the storage and/or voiding phase of bladder function. Risk factors for these subtypes of incontinence can be genetic, demographic, environmental, behavioural, and physical. Therefore, treatment is multidisciplinary, and an accurate diagnosis is required for the treatment to be successful. 1,2,4-8 Subtypes Symptoms Signs Overactive bladder  Frequency  Voiding urgency  Incontinence  Constipation  Enuresis  (Cystometric) detrusor overactivity  Holding maneuvers  Bell shape/ tower shape pattern  Thick bladder wall  Low volume voids

7 Dysfunctional voiding  Failure to relax the sphincter during voiding  Normal micturition frequency  Incontinence  Constipation  UTI’s  Enuresis  Post void residual  Staccato or interrupted flow pattern Normal amount of voids Underactive bladder  Low micturition frequency  Incontinence  Constipation  UTI’s  Post void residual  Staccato or interrupted flow pattern  Frequent big volume voids  (Cystometric) weak detrusor contractions Voiding postponement  Low micturition frequency  Incontinence  Normal flow pattern  Normal fluid intake  Often associated with behavioural problems Subtypes of LUTD; The assessment and documentation should be based on the following parameters; urinary incontinence (presence or absence and frequency), voiding frequency, voiding urgency, voided volumes, fluid intake, ROME- IV criteria. 2. Urotherapy and Urotherapists Urotherapy (also known as bladder training) is the first-line treatment for all types of functional incontinence. It can be defined as bladder re-education or rehabilitation aiming at correcting any correctable anomalies of the filling and voiding function of the bladdersphincter unit. Comorbid problems like constipation, urinary tract infections and behavioural problems, should be assessed and treated during urotherapy. For

8 comorbidities and severe bladder overactivity, medication may be necessary. Treatment of incontinence in children is often complex and requires time and patience. Urotherapist is a term (ICCS) for healthcare professionals with psychology, nursing, physiotherapy, or medical background, who have obtained their expertise through specific training and include the children’s continence nurse/nurse specialist, child (pelvic floor) physiotherapists and psychologists. The urotherapist must have a knowledge of the anatomy, physiology, and pathophysiology of the gastrointestinal and urogenital system. In addition, the urotherapist should understand the psychological and behavioural assessments in children allowing them to analyse the problem of the incontinent child and recommend modifications.6 3. Team Approach Treating children with bladder and bowel problems is teamwork. Therefore, it will always be multidisciplinary in its approach. Each healthcare provider will do incontinence assessment, initial screening of behavioural comorbidities, education of child/family and teaching voiding/bowel regimes. However, shared areas of expertise and discipline-specific expertise is needed. The role of the Urotherapists Urotherapy is specifically provided by the urotherapist making a treatment plan and counsels the child and the parents during treatment. Urotherapists teach skills and advise to change behaviour patterns; therefore, they must be able to coach the child and have frequent contact with the child and parents. In certain situations, the urotherapist must have the courage to take a treatment break. Continuous treatment without good outcomes causes frustration and demotivation in children and parents. The role of Physiotherapists Physiotherapists are skilled at assessing muscle dysfunction and prescribing exercises such as pelvic floor muscle relaxation, strengthening or endurance to facilitate defecation and treat dysfunctional voiding. The physiotherapist contributes to musculoskeletal assessment

9 and movement analysis. Physiotherapists may use abdominal and perineal ultrasound for the assessment of pelvic floor and abdominal muscle function and provide biofeedback. The role of Clinicians Clinician (urologist/pediatrician) will assess the child's symptoms, medical history and do a physical examination and rule out neurogenic and anatomical problems. In case urotherapy fails, the medical team may decide to prescribe medication and/or perform further investigations, such as invasive urodynamic investigation or cystoscopy. The role of Psychologists Incontinence can be associated with a wide variety of psychological symptoms and disturbances. If behavioural questionnaires, like the CBCL or SDQ suggest emotional and behavioural problems, a full psychiatric/psychological assessment and treatment are necessary. Also, when treatment fails due to behavioural problems, anxiety, or depression, it is good to seek the advice of a psychologist.20 4. Assessment and Diagnosis The diagnosis can be made based on history, physical examination, uroflowmetry, noninvasive ultrasound, and voiding /bowel diaries. The dysfunctional voiding symptom score (DVSS) is the most commonly used tool to evaluate and monitor treatment progress. Behavioural questionnaires and quality of life (QoL) questionnaires are important tools to evaluate children’s functioning. 1,-8, It is the task of a urotherapist to assess a child’s problem, its severity, the impact on quality of life, and motivation for treatment and to decide which steps (treatment sequence) or elements of urotherapy are needed. Critical thinking is crucial, and the following three questions should be asked in the beginning and re-evaluated during treatment:

10 1. Is there a clear diagnosis and which subtype of incontinence is present? An accurate diagnosis is important to start correct treatment. The cornerstone of good diagnostics is primarily an extensive micturition history including frequency, urgency, when and how incontinence occurs, ways of dealing with bladder problems, history of febrile urinary tract infections, and toileting position. Defecation history focused on the Rome IV criteria for constipation is important. 2. Is urotherapy the preferred therapy for the child’s problem? Before starting bladder training, anatomical and neurological causes of incontinence should be excluded. Treatment should first address urinary tract infections (if present), followed by managing the bowel dysfunction (if present) and then daytime incontinence and finally bedwetting. 3. Are the development, maturity, and social environment of the child suitable to undergo this treatment? Assessing psychosocial history is important to judge whether the child has the psychological ability and motivation to understand his/her bladder bowel problems and to understand the rationale of the therapy. Treatment requires a change in the child’s voiding-bowel behaviour and therefore the child should have the discipline and motivation to persist, and the family should be able to support the child during this process. Under the age of 6 years, children do not have sufficient body awareness or the ability for self-reflection and discipline. Therefore, children under the age of 6 years should not receive intensive urotherapy. However, it is more important to explain to the parents how to support their child. Important events such as moving with perhaps a change of school, or the arrival of a new baby may be valid reasons to postpone the start of treatment. Interaction problems within the family can also have a negative impact on treatment results. Behavioural and emotional disorders, such as ADHD, are more often seen in children with functional incontinence. It is essential to take note of this reality. It is recommended to use questionnaires like the Child Behaviour Checklist (CBCL) (see:

11 www.aseba.org ) or Strength and Difficult Questionnaire (SDQ) (see: www.sdqinfo.org/a0.html) to gather information about a child’s behaviour if there is a cause for concern. Behavioural problems interfere with treatment and result in less favourable outcomes. 18-20 It will be useful to look at each of these three items separately, but it is important to note that these elements are interrelated. 5. Therapeutic Interventions Toilet training for constipation Constipation should be addressed before treating daytime incontinence. Faecal impaction causes pressure on the bladder neck and urethra which may be contributing to LUTS. Treatment consists of a toileting program and medication with laxatives and healthy lifestyle advices.1,4,14 Toileting program: The child is advised to go to the toilet for approximately five minutes after meals (to make use of the gastrocolic reflex) to try to defecate. The child should be encouraged to actively push, with the feet firmly on the floor or take support of a footstool if necessary. The aim is to flex the hips beyond 90 degrees which allows the anorectal angle to straighten, making it easier to defecate. The child should be actively involved in this and should not, for example, read a book which distracts his/her attention. To optimize the effect of the toileting regime, it is good to give the child a specific task. For example, children can be asked to actively push ten times with the belly and hold it for a while, then relax and then press ten times again. The results are recorded in a defecation diary, distinguishing between spontaneous defecation and planned defecation during toilet sitting. This will help the child to re-learn the sense of urgency. The diary gives an insight into the progress of the treatment and will have a motivating effect on the child and parents. In doing so, it also provides an

12 impression of therapy adherence. Some children who have a very dilated rectum with no sense of filling will require help with washouts or enemas to kick start the toileting regime. Standard urotherapy Standard urotherapy combines assessment (with registration of voiding frequencies, voiding volumes and incontinence episodes in a bladder diary) and education and demystification, behavioural modification instructions, lifestyle advice regarding fluid intake, and support and encouragement to children and their parents.4,5,6, 1. A crucial part of urotherapy is providing parents and children with good explanations regarding aetiology, prevalence, and pathophysiology. This will reassure parents and help them understand the causes of the child’s wetting accidents and the rationale of the therapy. This will improve compliance. 2. Instructions are given on appropriate fluid intake and regular voiding during the day. Child is encouraged to try to go to the toilet seven times and drink seven glasses per day. 3. Explanation of the correct toilet posture is provided and advised to use a stepping stool for foot support if feet don’t touch the floor easily. Also, they are taught to relax the belly when they voiding. 4. A bladder diary should be kept for self-monitoring and motivation, and to provide the child and parents with insight into treatment progress, compliance and adherence. After introducing the elements of urotherapy, the child practices at home for a maximum of three months. During this practice period, counselling is given during frequent followups which may be face-to-face or telephone/or video. Specific urotherapy When the results of standard urotherapy are unsatisfactory, specific urotherapy is recommended for select sub-types of LUTD. Specific urotherapy is multidisciplinary and comprises specific interventions such as psychological support and behavioural modification, biofeedback, physiotherapy, alarm training, and neuromodulation. It can be combined with pharmacotherapy if indicated. 5-8

13 Biofeedback is an important component of specific urotherapy. It is the process of gaining greater awareness of pelvic floor muscle/sphincter action using external instruments that provide information about the action of these muscles to increase awareness and voluntary control by the child. Visual or auditory feedback can be used, and this together with coaching and encouragement from the therapist, aims to improve motor control. It involves showing the child when their bladder is empty by using real-time uroflowmetry, ultrasound and /or, electromyography (EMG). - Real-time flowmetry: In this method, the child can observe the flow curve during voiding. The child will be taught to recognise when urinating incorrectly and will be instructed to keep trying, through a relaxed posture (relaxed pelvic floor) until they can achieve a continuous, bell-shaped curve. - Ultrasound can be used to check if the bladder is empty after urination and this measure gives feedback to the child about performance. - In addition, trained and experienced physiotherapists/urotherapists can perform transabdominal or transperineal ultrasound which provides direct feedback to the child on the movement of pelvic floor muscles and its effect on the bladder neck when the child contracts and relaxes the pelvic floor.(5,6) - EMG electromyography provides additional information on the use of the pelvic floor during voiding, this will help the child to learn how to contract and relax the pelvic floor muscles at will. Pelvic floor muscle training Pelvic floor muscle awareness can be taught via the whole-body approach using techniques such as progressive relaxation, seated ball work and known synergistic patterns. PFM action on the voiding pattern is a sign of dysfunctional voiding. Characterized by a staccato or intermittent flow pattern with usually prolonged voiding time and incomplete bladder emptying. The aim is for the child to internalize the sensation of relaxation, and have sufficient awareness to practise correctly and apply it during the initiation of the void and throughout voiding. How to teach PFM awareness to a particular child depends on the

14 motor learning needs of that child which vary with many factors, including age, sensorimotor awareness and cognitive ability. Beware that only pelvic muscle training alone does not seem to be useful to teach continence. The combination of all elements of specific urotherapy, behavioural modification, frequent follow-up is paramount ,6-,8 Key learning elements of urotherapy. In essence, the children learn how to void, when to void, and how often they have to void. To reach optimal training results, these three learning elements must be repeatedly practised together. 6.Evaluation of Treatment Treatment results can be objectively assessed based on the ICCS criteria: no response (049% reduction of symptoms), partial response (50-99% reduction of symptoms) and complete response (100% improvement). However, treatment success is also determined by the extent to which the child and parents are satisfied with the results. Satisfaction and improved quality of life can be a reason to end treatment instead of persistent striving for optimal results. When urotherapy fails, it is important that the Urotherapist can explain the reason. An underlying medical condition can account for failure. It is advisable to re-evaluate whether the initial diagnosis was correct by performing additional physical examination and urodynamics.1-4 When children are too immature, they may not have the cognitive skills or motor abilities to understand and complete urotherapy. A problematic family situation such as divorce can be a reason for failure. Sometimes it may be due to an inability to form a rapport and working relationship with the family ('it doesn't click'). Then it may be useful to ask a

15 colleague to take over and continue the training. Sometimes more psychological support is needed. Children with comorbid behavioural problems such as ADHD may also struggle with understanding and following instructions.

16 Section 3. Cases CASE 1: Constipation Treatment in a 7 year Old Boy Objectives: After completing this chapter, you will be able to:  Understand the basic anatomy and physiology of the gastrocolic system and be able to explain it to the patient and families.  Understand the impact on patient and family when constipation and faecal incontinence occur.  Know the symptoms of functional constipation in children  Know about both basic assessment and treatment of constipation  Know about non-pharmacological and pharmacological treatments of constipation. Keywords: Constipation, bowel diary, Rome IV criteria, toilet training, ultrasound Background; From outpatient clinic John is a 7 years old boy with normal weight and height. He has been suffering from faecal leakage 1-2 times per week for the last couple of years. He opens his bowel 4-7 times a week and has a stool that is 3-5 on the Bristol stool scale. He doesn’t like to use school toilets and avoids opening his bowels there. His stools are large and clog the toilet but are not painful to pass and are not hard.

17 He urinates 3-4 times a day without incontinence, urgency or any problems with emptying the bladder and there is no enuresis. He eats a variety of foods and has regular breakfast, lunch, and evening meals. He drinks 3-4 glasses of water or milk per day. Abdominal ultrasound of the rectum shows a dilated rectum of 3,7 cm and he does not feel the urge to poop. The abdomen feels soft and nontender, but some faeces can be felt in the lower left side. At Home and School Divorced parents and he lives with each parent a week at a time. Has two smaller siblings, 5 and 3 years old. He is in his first year in school and is very much into playing video games with his friends over the interne  Signs: what are the signs/problems If using the Rome IV criteria there are signs of functional constipation. o Leakage of faeces at least once a week o Withholding his stool in school o Large stools in the toilet sometimes. o Widened rectum above 3 cm without the need for pooping. Problems in his daily life  Not going to the toilet in school  A lot of sitting in front of the computer.  A different approach from the two parents could make it difficult to maintain routines Rome IV criteria: Must include two or more of the following occurring at least once per week for a minimum of 1 month with insufficient criteria for a diagnosis of IBS:  Two or fewer defecations in the toilet per week in a child of a developmental age of at least 4 years  At least one episode of faecal incontinence per week  History of retentive posturing or excessive volitional stool retention  History of painful or hard bowel movements  Presence of a large faecal mass in the rectum  History of large diameter stools which can obstruct the toilet  After appropriate evaluation, the symptoms cannot be fully explained by another medical condition

18  Parents blame him for the faecal leakage and tell him to go to the toilet to avoid leakage and don’t be lazy. Assessment & engage phase:  Request for help,  Referred from the outpatient clinic because of faeces leakage.  Correct diagnosis, With a normal height and weight and a previous history of normal bowel habits, it strongly tells us that he has not got any physical illness causing his problems with constipation. It is always good to inspect his lower back, genitals, and anus at least one time to assure that it’s looking normal and that he has no scars or bruises giving suspicion of sexual abuse. This could have been done by the general practitioner, but not always. The use of the Rome IV criteria gives the correct diagnosis of functional constipation he fulfils four of six criteria44,14. Use the Bladder and Bowel Diary and British Stool Scale to ask the child about the type of stool.  Treatment goals,  Stop faecal leakage.  Stop withholding behaviour.  Establish good bowel habits.  Treatment plan  According to the ESPGHAN (European Society for Paediatric Gastroenterology, Hepatology and Nutrition) 14 guidelines from 2014, there are three main steps of treatment; evacuation of old stool, long treatment with softeners to prevent relapse and make it pleasant to poop and lastly toilet regime with toilet visits every day. Treatment phase:  Psycho education/instructions

19  It is essential to provide parents and child with good explanations regarding the aetiology, prevalence and pathophysiology of constipation. In doing so, it may be helpful to illustrate with drawings that faecal incontinence does not occur intentionally. Explain to the child and parent the signs of constipation and how that effects the function of the rectum and the normal defecation patterns. By using anatomical models and child oriented short films, it can be made understandable for even smaller children. Use the POO factory. For example, start by showing the normal function of the rectum on an anatomical model and how the child gets signal and feels when it is time to poop. Then explain the different findings and what they mean for the function of the rectum and how that effects the child. This information is vital for adherence to treatment which can be distressing for the family with medication and struggling with routines at home. By explaining about the defecation signal, the child can understand why it is important to go to the toilet when they feel the urge to poop.  Parents should be encouraged not to punish the child but rather approach it positively. It should also be explained that constipation is recurrent in nature, which means that it is often accompanied by good and bad periods. In addition, dietary advice should be given with regard to a normal fluid and fibre intake.  Pharmacotherapy  Disimpaction of old stool It is recommended to use either enema once a day for at least 4 days in a row, or a high dose of Polyethylene glycol (PEG or Macrogol) for 4-6 days. According to ESPGHAN guidelines, the dose is 1-1,5 g/kg/day. For example, a 20 kg child gets 3-4 sachet a day. Enemas often make a good and direct effect, but the drawback is that it must be given rectally which some children and parents find distressing.

20 Polyethylene glycol is administered orally but its drawback is that it needs to be given for at least four days in a row and increases the risk of faecal leakage during treatment. This treatment could be repeated if constipation and/or faecal leakage come back. This is not uncommon in the beginning of the treatment.  Maintenance treatment The maintenance dose of Polyethylene glycol is smaller than what is given in the disimpaction regime. The dose needs to be sufficient to make the stool soft and there are individual differences in how big the ideal dose is. The family can use the Bristol stool scale to monitor the correct dose for their child. The goal of the treatment is that the child shall have soft poo daily or every other day. Polyethylene glycol shall be mixed with the correct amount of water and works by retaining the water in the colon. If the child has difficulties taking Polyethylene glycol it could be mixed with lemonade or juice. It can be taken in the morning or evening.  The family needs to be observant of relapses in the treatment. Signs of this can be faecal leakage or infrequent defecation. When this happens, the parents need to treat with either enema for 1-2 days or increase the dose of Macrogol for 2-3 days to make the treatment work again.  The treatment with Polyethylene glycol needs to be continued for at least 3-6 months and in many cases longer. The child needs to have a regular bowel habit without holding behaviour for a couple of months before the Polyethylene glycol dose can be lowered and finally ended. If there are recurrent problems with faecal leakage or the child starts to poop infrequently, the treatment needs to start again.  Urotherapeutic interventions  The third part of treatment is regular toilet visits after meals 1-3 times a day. This is to use the gastrocolic reflex and establish good bowel habits. Sitting 5-10 minutes after food increases the chance of passing stool regularly.

21  How to sit on a toilet is also important because this can vary a lot between children. If sitting badly (the pants too far up, sitting with legs not enough apart, too much forward-leaning etc.) can make it harder for the child to poop effectively. By sitting with the pants lowered under the knees, with legs apart and feet on the ground or a stool, the pelvic floor can relax properly making pooping more efficient.  How the child pushes the poo out is also important to assess. If the child when straining pulls the stomach inwards, they tighten their pelvic floor and prevent the poop from coming out. If they push their belly out when straining the pelvic floor relaxes and the poop pushes out more easily.  According to the ESPGHAN guidelines, there are 3 advices about food that are recommended:  Eat breakfast, lunch, and evening meals. This is the best way to activate the gastrocolic reflex.  Do not eat too much bread and pasta. This needs a lot of water to make the poo soft which children could have difficulties drinking.  Drink a normal amount of water, 6-8 glasses a day. There is no evidence that an increased fluid intake could solve constipation but if the child drinks too little it could affect the softness of the poop.  The child should be encouraged to be active in their spare time and not sit still all the time e.g. playing video games.  Practice Support the child during treatment, helps when the child understands that he/she needs to practice. Clear instructions and a bowel diary helps the child to stay motivated. The aim of toilet training is that the child learns to recognize the urge to poo and eventually understands that he must go to the toilet and not postpone it. Erreur ! Source du renvoi i ntrouvable.

22  Modification When deciding on the treatment plan it is important to assess the family’s abilities to adhere to the plan. Can the family handle enemas, give the child Macrogol regularly and have regular toilet visits after meals? 14 If the parents are divorced; how is the relationship between the parents and how are the arrangements for the child decided? Who has the custody? How much time the child spends with each parent? If the parents have poor communication, the information must be given to the other parent who might not attend the visit to the clinic. If there is a concern for the child’s wellbeing because of the conflict between the parents, social services may be involved to help the family. Do the schoolteachers need to be involved in the treatment? It is hard in most cases to make toilet visits during schooltime but if the faecal leakage occurs during school that might be needed. Teachers need to be informed so that they can help the child change clothes in case of leakage.  Evaluation (adjust treatment plan) Contact and support with the family after the initial appointment is vital to control how the treatment is going. There is a risk that because of the tough treatment, the family don’t do it as planned. By contact through telephone or video the family gets support and encouragement to continue the treatment. On an outpatient clinic visit, the reassessment of symptoms gives a clue on how the treatment is working. Use the Rome IV criteria again and see if there are any changes for the better. If successful, ultrasound assessment of the rectum should reveal an

23 empty rectum with a width under 3 cm if the child doesn’t need to poop. Has the treatment resulted in the anticipated effect? Has the defecation pattern changed, and faecal leakage stopped? If the leakage of faeces gets better but then comes back, there might be a relapse in constipation. Another round of evacuating the hard stool might be needed. This is not uncommon in patients. Is the toilet routine working? If the leakage does not stop despite aggressive treatment of constipation, there might be a need for transanal irrigation (TAI) for some time. By adding water rectally to the colon via an irrigation set daily or every other day, the bowel empties better, and a normal defecation pattern is supported. The patient has a better chance to be free from leakage of faeces or have an improvement. TAI is an invasive treatment that can be very distressing for some patients and parents but if they are bothered by the leakage, they are often more positive to give it a chance. Ending phase When the treatment has resulted in a period of at least 3-6 months of good bowel habits with daily pooping and no leakage, the treatment can be reduced slowly. If the child has started to poop by itself, the routines after meals can be skipped on those days. The macrogol dose can be lowered gradually, for example once a week by ¼ dose. Some families want to go even slower. If the child has TAI, the irrigation days can be reduced, and it is ok to use the irrigation more sporadically in the end.

24 Case 2: Overactive Bladder and Enuresis Treatment in a 9 year old boy Objectives After completing this chapter, you will be able to: 1. Understand the impact of persistent wetting on quality of life 2. Implement a teaching plan for 9-year-old boy and his parents 3. Compare and contrast anatomic and physiological characteristics of the lower urinary tract in children 4. Relate the assessment findings to the child’s lower-urinary tract status. 5. Identify various factors associated with OAB, daytime incontinence and bedwetting 6. Outline the therapeutic regimen for OAB / Daytime Urinary Incontinence (DUI) and bedwetting. Keywords: OAB, bedwetting, non monosymptomatic, flowmeter, ultrasound, bladder diary, DUI Background David is a 9-year-old boy who was diagnosed with daytime incontinence and bedwetting At home and at school He is the middle child of three siblings. He has a 12-year-old brother and a 6-year-old brother. He lives with his mother and father, out in the countryside. He and his family have a dog and some chickens. His father is a teacher at a local high school and his mother is a childcare worker.

25 His older brother wetted his bed until he was 10 years old. David likes playing football and video games with his friends after school. He enjoys going to school and loves math. During summer he went on a summer camp and his family doctor prescribed desmopressin to manage bed wetting during the camp. Assessment History: David comes with his mother to the clinic He has been referred by the general practitioner since his daytime and night wetting persists. Based on their answers you get the following information: He is wetting day and night; both his underpants and his pants are often wet. He usually walks around with it. It often starts with a big wet spot that gets bigger and bigger. Mother told you that she sends him to the toilet when she sees him holding up, visible by holding manoeuvres, like wiggling. After school, when he is playing football outside or videogames, he is wet more often. The imperative urge to urinate is particularly bothersome to him. In total, his micturition frequency is about 9× per day. He doesn't have to strain while voiding. His fluid intake is about 7 glasses a day. At night, he wears diapers. He is a deep sleeper and he never wakes up for weeing. He has no poo problems, no faecal incontinence, his bowel movements are daily and Bristol stool chart scores 3-4. Psycho socially: Before the visit, his mother completed the SDQ (strength and difficulties questionnaire): his total score was 10, which is normal and there are no suspicions of any behavioural problems. His school results are fine and he has normal concentration. He likes to go to school and see his friends. Family situation: happy and healthy family situation. Impact of his bladder problems: He feels embarrassed when he needs to go often to the

26 toilet especially when he is at school. His wet pants are frustrating but not everyone can see it. Only his best friend knows about his wetting problems. He doesn’t like to stay over with friends. The prescribed desmopressin during summer camp wasn’t effective and he was still wet. He doesn’t want to use that again. He has never been bullied. Sports: Football and being a supporter of the local football club is his passion.

27 His bladder diary Time Mict vol (ml) Urine incontine nce Drink (ml) Tim e Mict vol (ml) Urine incontinence Drink (ml) 8.30 200 8.00 150 10.00 200 10.0 0 60 200 11.15 70 11.3 0 200 11.30 Under pant wet 100 12.0 0 20 drops 13.0 0 200 12.30 80 13.3 0 90 14.00 90 200 15.3 0 200 17.00 70 Jeans wet 250 17.0 0 50 Underpants wet 18.00 400 18.0 0 200 18.30 100 18.1 5 100 19.30 100 19.0 0 80 200 19.2 0 120 19.4 0 110 20.0 0 120 Total 6 times 1350 Tota l 9 times 1350

28 Flowmetry Ultrasound Rectum diameter Post void Physical examination (done by a medical doctor) - Neurologically and anatomically, no abnormalities. Ultrasound of the kidneys: normal length, normal size, normal ureters. Bladder wall thickness after voiding 4 mm. 0 10 20 30 40 50 5 10 15 20 25 30 35 40 45 50 55 60 Flowrate (mL/sec) Uroflow

29 Conclusion David is a boy with urinary incontinence during day and night. Based on symptoms and bladder diary, a diagnosis of an overactive bladder is made. He has no constipation or other complaints. The first step is starting urotherapy. Since he has a small bladder volume, also prescribe Oxybutynin 2,5 mg twice a day, before school and after school, to help him to control his bladder urgency. Starting with Oxybutynin is not only for urological reasons but also for mental support; the sooner he experiences control of his bladder, the better motivation he will have to continue his training and, it will help to improve his self-confidence. 1-3,6,9 Treatment phase Conditions for the success of urotherapy. The rationale of the therapy, the patient's motivation and expectations have been thoroughly questioned and discussed. Final goal: At the end of the urotherapy treatment, he has less or no wetting accidents during the day and night. He and his parents are satisfied. Short term goals: 1. Explanation & demystification: He and his mother have gained an adequate understanding of how the bladder works and what goes wrong in an overactive bladder. They are aware of why it is difficult to stay dry during the day: Wee factory 2. Voiding regimes: See textbox below and the Training Instructions He and his mother know what average fluid intake is appropriate for his age and how to properly distribute the fluid intake throughout the day.  How to void: he has gained insight into his toilet position, knows how to adjust it, and what aids are needed for this.

30  When to void: He understands that he should go to the toilet ‘’when you feel you have to go, you need to go’’  How often to void: He understands that when and how often he should go to the toilet., a bladder diary will be his feedback tool  Inhibit urgency by prescribing anticholinergics, this will give him some relief regarding urgency complaints. Long term goals: 1. An increase in his maximum voided volume, according to his expected bladder capacity 2. He will be able to inhibit urgency, increase the time that he can hold his urine 3. He will be dry at night

31 Training instructions (also case 3) You will learn 1. How you should wee (in a relaxed way) 2. When you should wee (try and go when you feel the need) 3. How often you should wee (about seven times each day) If you’re busy and you feel that you must wee, you must go to the toilet straightaway! You’ll be thinking: “I’d better wee to make sure that I can reach my target to wee seven times per day.” At school, you will have to wee as well (during the break if you can). Try to go even if the toilet is very dirty. If you must, you can wee standing up at school. When you are on the toilet, remember to:  Sit up straight, with your feet on the ground or a footstool.  Keep your tummy relaxed.  Wait until the wee comes and don’t force it out.  Wee in one go (listen carefully to make sure you are weeing in one steady stream).  Breathe out gently or hum while you are weeing. Every time you’ve done a wee, sign the list. Make sure the list is kept in the same place so that you can sign it quickly and easily. If you wee’d while you were at school, you must remember that for a while. You could write a line on your hand for example so that you don’t forget. You can add this to the list when you get home. At the end of the day, your father or mother will write something on your list. To remember!!!???? Try to do it as well as possible. Go to the toilet because you know that it is important. You don’t feel very good?? how full your bladder is, that’s why you must go always on time, 7 times each day. If you forget to do this, there is a risk your bladder would be too large. If you don’t like to go, think “I better go and reach my target. Make sure you drink enough at home (1.5 litres). You must try and feel when you need to go. Your mother or father can help you by saying “1-2-3”. You then ask yourself, “Do I need to wee

32 Therapy David gets information from the Urotherapist about how the bladder works and what an overactive bladder is. He gets a written training explanation about the training and a bladder diary to keep his training results. The Urotherapist explains what Oxybutynin does and what side effects can occur: Training instructions – Bladder diary Inhibit urgency by prescribing anticholinergics, this will give him some. It is important that he drinks sufficient and has bowel movements every day. Furthermore, he gets the message that when he is feeling his bladder signals, he must go. Postponing is not permitted at this stage of the treatment, and he must learn to react adequately to his bladder signals: Wee factory He gets instructions about how to keep training rules at home. The Urotherapist teaches him the 3 training rules: how to void, when and how often. The Urotherapist agreed on how to support him in the coming weeks: They will ring him weekly. He is doing bladder training, and his mother/father may reward him, and help by reminding him to practice and to hold on. Follow-up During the first three weeks, the Urotherapist rings him every Monday after school time. She discussed how training is going. David must tell his training results. How often did he stay dry, what went well, and what is difficult? First phone contact: The Urotherapist speaks with David. The phone is on the speaker so his mum can listen too. Together they discuss his training process. David follows the training instructions. He has worked on his toilet and drinking routine. After he goes to the toilet, he signs his list. At the end of the day, he drew a sun or a cloud on his list: A sun when he stayed dry or a cloud when he was wet. He scored 2 suns this week! Of the 7 days during the week, he was dry for 2 days. A record for him and he and his mom were really very proud. Excellent!

33 The Urotherapist compliments him on this good result. And she asked him how he manages to train so well. He told her that keeping the list reminds him to go to the toilet when he feels his bladder signal. He noticed some effects of the medication on his number of wee's per day which now varied between 7-8 times. Tele-coaching Third week phone contact; the Urotherapist repeats and mentions the key training elements: (How to void, how often to void and when to void). He is training really hard. He is able to apply all trainings elements on his own and little help is needed from parents. His training result from last week are as follows Day Number of Drinks/ voidings Dry/wet Notes from his mom Monday 1 December 6 glasses 6 Normal school day, went to tennis after school Tuesday 2 December 7 8 Played with friends after school, went to the toilet timely Wednesday 3 December 6 7 Wet just before dinner, had an exciting day, due to his brother‘s birthday. Thursday 4 December 7 9 Did great, had a few drops in his pants. Smaller than 2 euro coin. Friday 5 December 5 8 went to school, trained hard. Saturday 6 December 8 7 He was dry till afternoon then he became wet. He didn't notice his bladder due to playing with his father and brother. Sunday 7 December 6 7 We went to the forest. Monday 8 December 5 6 Still dry …till phone call

34 During the following weeks, he reported similar trainings results. However, concentration slightly waned during the last 4 weeks. His parents had to remind him more often about the training, and when it was pointed out to him to pay attention, he manages to stay dry again. Treatment outcome Follow-up After 3 months, he returns to the clinic to evaluate how things are going then. He has fewer wetting accidents during the day, 2-3 per week and when he is wet, it’s only his underpants, not his trousers anymore. With full days program and distractions when he is playing with friends, he becomes wet. He is aware that it will take him effort to stay dry during the day. He and his mum are satisfied with the results. He has less urgency complaints, he had bowel movements every day. His voiding frequency has improved to 6-7 times a day and his bladder volume increased to max 200 mls. Wetting still occurs during the night, and he is wearing a diaper during the night. He would also like to become dry at night. 0 10 20 30 40 50 5 10 15 20 25 30 35 40 Flowrate (mL/sec) Uroflow Time (sec)

35 David finished his bladder training and received a Diploma! The plan is to continue with Oxybutynin to support his bladder and to help to increase the bladder volume. After 6 months he is coming back at the outpatient clinic for treatment of bedwetting. Six months later: After completing his bladder training, David learned during the training how to stay dry during daytime. The most difficult moments are still after schooltime, while playing with friends or the PlayStation. He voids 6-7 x per day. He has measured his maximum voided volume at home, and it has increased to 250mls, although this volume is still small according to his expected bladder capacity (EBC). He is 10 years now, so it should be around 330 ml. Beware that constipation can be a contributory factor for OAB, incontinence and bedwetting and hence always check defecation habit/bowel movement. It is possible that he has developed constipation due to the use of Oxybutynin. It’s important to check it according the Rome 4 criteria. David has no severe side effects of Oxybutynin, no dry mouth, and he still has bowel movement every day, Bristol stool chart is 3 and he has no faecal incontinence.

36 At night he is still wet, and he is motivated to train. This is the most important factor in your decision to start an alarm treatment. The plan is to start a bedwetting training with alarm. Due to his small bladder volume, prescribing desmopressin (Minrin) is not preferred. It is expected that the alarm treatment in combination with oxybutynin will be sufficient. The Urotherapist provided him with instructions about the bedwetting alarm training, as he is ready for that. Mother has already purchased the alarm, so he can start immediately the same evening. Phone contact 4 weeks later. His mother told you that he had 13 dry nights during the first four weeks, That’s an amazing result. He takes his own responsibility and keeps the rules. He wakes up when the alarm goes off. He is keeping his bedwetting diary every day. The Urotherapist discussed that they may reward him with compliment or with his favourite food. He is working hard and doing his best. Rewarding will help him to keep the motivation. The final goal is 14 dry nights in a row. Phone contact 6 week later. David proudly told you that he has achieved 14 dry nights in a row. Super! He is still dry during day and during night. He is able to continue his good drinking, voiding and bowel habits. He may stop his alarm treatment.

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