This pack has been produced with by Frimley Health NHS Trust in partnership with Healthier Together
This pack is aimed at children and young people who have long lasting abdominal (tummy) pain. When a physical cause cannot be seen on a test or a scan, it is called ‘Functional pain’, because it affects your functioning (what you are able to do).
This pack has been produced with by Frimley Health NHS Trust in partnership with Healthier Together.
This pack is aimed at children and young people who have long lasting abdominal (tummy) pain. When a physical cause cannot be seen on a test or a scan, it is called ‘Functional pain’, because it affects your functioning (what you are able to do).
The urinary system, also known as the renal system or excretory system. Its purpose is to eliminate waste from the body, regulate blood volume and blood pressure, control levels of electrolytes and metabolites, and regulate blood pH. The urinary tract is the body's drainage system for the eventual removal of urine. It consists of the following:
The medical term for the inability to control urine in individuals who are already toilet trained. Such accidents commonly occur at night, when the individual is sleeping, but wetting can occur during the daytime as well. Daytime wetting occurs in roughly 3.5% of healthy children, with 67% of these children experiencing night time wetting.
Enuresis Signs/Symptoms Include - Damp underwear, urine accidents during the day and irritation and/or redness around the genitals.
A child who experiences daytime wetting may feel the urge to urinate at the last minute and may ‘curtsey’ using their heel to stop the flow of urine. When the child/young person does go to the toilet, the outlet valve may not relax fully. This means that the bladder does not empty fully. When the child returns to what they were doing, the outlet valve will relax, and urine can leak out. The child becomes at risk of urinary tract infections (UTI) when the bladder does not empty fully. The bladder can continue to fill and become overstretched. This results in a loss of sensitivity and confusion of the signals between the brain and bladder.
The medical term for the involuntary wetting during sleep. Bedwetting is considered as a medical difficulty when a child older than seven years of age has one or more episodes per month. Whilst the causes are not fully understood, help with this has a positive effect on the self-esteem of children and young people.
Nocturnal Enuresis Signs/Symptoms Include - Many parents/carers observe wet bedding or nightclothes in children and young people with bedwetting.
Sometimes a child may not drink enough during the day, and then drink more in the evening, filling the bladder before bed. The sleeping child may then not feel the urge to urinate resulting in bedwetting.
Some children do not produce enough of the hormone that stops urine production overnight, therefore too much urine is produced.
For other children the signals from the bladder to brain are not working as they should. This means the bladder overfills and stretches, and the signals between the brain and bladder become more confused. Finally, a child may withhold urination due to a fear of using the toilet, or because they do not like using the toilet in certain environments.
Dysfunctional Voiding
Many children who experience daytime wetting feel the urge to urinate at the last minute and may ‘curtsey’ using their heel to stop the flow of urine. When the child/young person does go to the toilet, the outlet valve may not relax fully. This means that the bladder does not empty fully. This means that when the child returns back to what they were doing, the outlet valve will relax, and urine leaks out. The child becomes at risk of urinary tract infections (UTI) when the bladder does not empty fully. UTI’s also increase the risk of bedwetting; indicators of UTIs include smelly and cloudy urine, pain or burning during urination, and stomach aches.
Weak Outlet Valve
The outlet valve opens and closes to control the flow of urine. A weak outlet valve may lead to a child/young person wetting themselves when they laugh, cough, or strain.
Structural Abnormalities
Structural abnormalities in the bladder or the kidney tubes can also cause daytime wetting. This can result in pain while weeing, a poor wee stream or continuous trickling wee.
Nerves
The brain and bladder are connected by nerves; messages are sent from the bladder to the brain via these nerves. Sometimes these messages get confused and the warning of urgency, sent from the bladder, is not received by the brain. The child then may not realise they need a wee.
Functional Causes
Enuresis can also be described as a functional disorder, meaning that it has a physical impact of the body without any apparent visible, organic, biological cause. Psychological factors contribute in the progress of functional disorders.
Constipation
A bowel that is full of stools presses against the bladder. The bladder then becomes squashed and struggles to expand to hold large amounts of urine. As a result, the child/young person feels the urge to urinate frequently, and has to do lots of little wees.
Bladder Size
Some bladders do not stretch enough to hold all of the urine made during the night.
Urine Production
Some people produce too much urine at night, the bladder cannot hold this extra urine.
Sleep
Some children/young people do not wake up when their bladder signals to their brain that it is full.
Constipation
A bowel that is full of stools presses against the bladder. The bladder then becomes squashed and struggles to expand to hold large amounts of urine. As a result, the child/young person feels the urge to urinate frequently and has to do lots of little wees.
Type 1 Diabetes & Diabetes Insipidus
Symptoms of Type 1 Diabetes include more than typical urination, fatigue, weight loss, and thirst. People with Diabetes Insipidus experience excessive urination and increased thirst. If you are concerned, you/your child may have diabetes please see your GP urgently.
Bedwetting is nobody’s fault, it does not happen because of laziness or bad behaviour. It is an accident! Children/young people should not be punished for accidents.
You can see if you are drinking enough water-based fluid by looking at the colour of your wee. Hydrated, healthy wee is a light yellow colour (almost like water). Dehydrated, unhealthy wee is a dark yellow colour, and means you need to drink more water!
Water
Drink the recommended amount of water (information provided in the table below) based fluid throughout the day to help your bladder fill and stretch. This helps the bladder to hold more urine and stay healthy. Drinking also helps to keep your bowels moving too! By drinking lots of water and keeping your bowels moving healthily, there is less pressure on the bladder, increasing its capacity. Drinking less fluid is more likely to result in constipation, worsening day and nighttime wetting.
Drinks with caffeine in them can make an overactive bladder misbehave. These drinks include some fizzy-pop, coffee, tea, and hot chocolate.
Try to do most of your drinking in the daytime and just drink a small cup of water an hour before bed, if you are thirsty.
Diet
One of the causes of enuresis is constipation. It is important to eat a diet high in fibre, fruit, and vegetables (e.g. whole wheat products, peas, broccoli, carrots, sweetcorn and oranges, apples)
to enable healthy bowel movements. During episodes of constipation, the bowel presses against the bladder, limiting its capacity, meaning the child/young person urinates much more frequently. By having healthy bowel movements, the bladder has a larger capacity meaning urination will be less frequent.
Tip: Add more vegetables to soups and stews, have baked and boiled potatoes and keep the skins on, swap white bread for brown bread.
Toilet Routine
Try to have a regular toileting routine. Go to the toilet every 1.5 – 2 hours, even when you are busy doing something, it is important to listen to your bladder. Setting alarms might remind you to use the toilet. Try doing a wee before brushing your teeth and then another one just before you get into bed, so that your bladder is fully emptied before going to sleep.
When you do use the toilet, try to empty all of the wee out of your bladder. Sit down, relax, and take your time. Wee doesn’t need the same amount of force to push out like poo.
Bedwetting Alarms
Bedwetting alarms are attached to a sensor on the young person’s underpants, if the sensor gets wet the alarm goes off. This then wakes the young person up. Over time this should help the young person learn when they need to wee and wake up to go to the toilet.
A key element in the success of bedwetting alarms is the young person’s motivation and understanding that waking to the sound of the alarm is the treatment that will help to eliminate their night-time wetting. It is also important to start the treatment with realistic expectations. It can take an average of 2-3 months for a young person to be consistently dry at night, others can take longer. Furthermore, it is important that the child knows what to do when the alarm goes off (go to the bathroom, change their pjs, and strip the wet bedding).
More information about bedwetting alarms can be found at: https://www.eric.org.uk/guide-to-bedwetting
Bladder Training
The aim of bladder training is to help your bladder get bigger and stronger. During this process you should drink a water-based drink every 1-2 hours and try and wee 10 minutes after every drink. It will help if you are sitting on the toilet properly; girls should have their feet supported on a step, and boys might find it better to sit down to wee once or twice a day to help make sure the bladder is emptied properly. It is important to not rush when trying to wee, take time to empty your bladder completely. Try sitting on the toilet for 10-20 seconds when trying to wee; when finished, wait for 20-30 seconds, and attempt to wee again to ensure the bladder is empty.
For more information on Bladder Training and to read The Wendy Wee Comic, click here.
Advice for Parents and Children Using Toilet Charts…
Understand what Enuresis is
To understand the young person, you must first need to know what enuresis is, and what causes it. There are many potential causes of enuresis and nocturnal enuresis as described on pages 5 and 6 in this pack.
Normalise the Toilet
It is important to talk openly and honestly about going to the toilet.
This allows those close to the child to intervene at an early stage with simple measures to help them use the toilet.
Allowing your child to observe normal toileting behaviour, such as seeing parents use the toilet frequently, shows the child that the toilet does not need to be feared.
‘Toilet Area’
Sometimes it is necessary to build up confidence to sit on the toilet and relax before the child can comfortably pass urine on the toilet. Suggest that children who insist on using a nappy to urinate do so in the toilet area. Adopt a gradual exposure approach; encourage the child to sit on the toilet with the nappy on, and over time gradually remove it. It is important to create an environment without anxiety and pressure.
Teacher Support
Education settings should be aware of bladder and bowel conditions in their role in supporting affected young people. Education settings should also be aware of how to promote healthy bladders and bowels by encouraging students to remain hydrated, and ensuring all young people have access to clean, well stocked toilets at intervals appropriate to the need of the individual child. Parents/carers should also not be expected to come to school to change the young person, a care plan should be in place to ensure their individual needs are met in school. For younger children, it might be helpful for the teacher to have a spare change of their clothes available incase of any accidents during the school day. Older children may prefer to carry their own spare clothes, and clean themselves up.
Be Positive, Encouraging, Patient, and Understanding.
Evidence of your support, encouragement, and understanding will help your child to relax and eventually move forward in their journey to overcoming enuresis. Your support and understanding is VITAL – they can do it if you think they can. It is important to understand bedwetting is a medical condition, and is not the young persons fault.
Supporting those With Autism and Development Disabilities
Many children with autism are visual learners: they understand and learn more easily if pictures are used to help explain what is required. Social Stories and Picture Exchange Communication Systems can be used to give the child an understanding of the toileting process.
Enuresis can cause a lot of emotional distress for children and young adults. Muscle tension is commonly associated with stress and anxiety, it is the bodies natural response to potentially dangerous situations. Even when there is no danger, our bodies can still respond in the same way. You may not always realise that your muscles are tense, it may be as subtle as your jaw clenching, or as obvious as your shoulders feeling really tight and hunched. PMR is a deep relaxation technique which is based upon the simple practice of tensing one muscle group at a time . This is followed by a relaxation phase with release of tension. This is very useful before bedtime.
During deep breathing your blood is oxygenated, triggering the release of endorphins, whilst also decreasing the release of stress hormones, and slowing down your heart rate.
Help yourself to feel more relaxed by thinking about things that make you feel calm and rested. For example, picturing your favourite place. This can be either independent, or you can take a guided visualisation approach. A guided visual imagery relaxation task has been provided in this pack.
Safe Place Visualisation
A powerful stress reduction and relaxation tool, that can be applied at any time, in any location.
The Ladder Hierarchy
Help yourself to change how you cope with toileting difficulties, by gradually exposing yourself to different toileting scenarios over time.
These are phrases that you can say to yourself that are supportive. For example “Just because it has happened before it does not mean it will happen again”
⦁ Mindfulness and Sleep: https://www.smilingmind.com.au/
⦁ Meditation and Sleep: https://www.calm.com/
⦁ Meditation: https://www.headspace.com/kids
⦁ Progressive Muscle Relaxation: https://www.thinkpacifica.com/
ERIC, the Bladder and Bowel Charity website: https://www.eric.org.uk/ There is a free downloadable Guide to Children’s Toileting Problems. ERIC have also created Poo and Wee characters and a range of videos for children and parents.
Bladder and Bowel UK website : https://www.bbuk.org.uk/children-young-people/
National Institute for Health and Care Excellence (NICE) Guidelines: www.nice.org.uk/guidance/CG111
Books:
Bedwetting In Children and Young People: A Simple Guide For Parents – Dr C Yemula
General Resources:
⦁ Free Online Counselling for Young People: https://www.kooth.com/
⦁ Stress and Anxiety: https://www.moodcafe.co.uk/for-children-and-young-people/feeling-worried
⦁ Relaxation Techniques: www.getselfhelp.co.uk/relax.htm
⦁ Relaxing Imagery: www.getselfhelp.co.uk/imagery.htm
⦁ Thought Distancing: www.getselfhelp.co.uk/cbtsetp6.htm
When accessing online resources and communities, it is important that children and young adults are supervised, and are aware of online safety.
Acute kidney injury (AKI) is when the kidneys stop working over a short period of time – a few days or a few weeks. It is sometimes called acute kidney failure (AKF) or acute renal failure (ARF).
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Arthritis doesn’t just affect the elderly. Find out more about conditions affecting the bones and joints of children and young people; to hear the experiences of a young person with arthritis, click here. The Centre for Adolescent Rheumatology and the Children’s Chronic Arthritis Association provide extremely useful information for young people.
Don’t let having asthma stop you living your life. Learn more about asthma and find ways to help you stay well.
Click here for videos on inhaler technique.
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Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that can't be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn't improve with rest.
For more information on CFS and the Specialist Chronic Fatigue (ME) Service for children and young people anywhere in the UK, please click here.
Chronic kidney disease (CKD) is a lifelong condition. The kidneys gradually stop working as well as they should. This usually happens over many years.
The Pain Toolkit is for people who live with persistent pain and Healthcare teams who support them. It helps people all over the world self manage persistent pain.
There are many young people in the UK who are born with a cleft lip or palate. Some of them have shared their stories about everything from school to surgery.
Growing up with coeliac disease, especially in your teenage years, can have its challenges, especially as you eat out more with friends. Don’t be embarrassed about having coeliac disease; it’s part of you and your friends will understand.
Cystic fibrosis(CF) is one of the UK's most common life-threatening inherited diseases. Cystic fibrosis is caused by a defective gene. As a result, the internal organs, especially the lungs and digestive system, become clogged with thick sticky mucus resulting in chronic infections and inflammation in the lungs and difficulty digesting food. Find out more…
Being a teenager is hard enough, without having Type 1 diabetes. Find out more about successfully living with Type 1 diabetes and getting through your teenage years. Listen to the experiences of young people with diabetes by clicking here. Or, to read a diabetes-inspired comic click here
‘Why do I have eczema?’ is a question asked by a lot of the young people with eczema. Find out more about eczema or listen to the experiences of other young people with eczema.
If you’re a teenager with epilepsy, you probably have all sorts of questions about how epilepsy could affect your life. For example, will you be able to go on holiday with friends, go to concerts and clubs and drink alcohol? Or maybe you have a friend, brother or sister who has epilepsy and you just want to understand more about it. Or you can listen to the experiences of a young person with epilepsy by clicking here. Young epilepsy provides great help and support.
Focal segmental glomerulosclerosis (FSGS) and IgM nephropathy cause nephrotic syndrome. This causes swelling in the body, especially in their face, legs and feet.
Glomerulonephritisis a group of conditions that cause inflammation (swelling) in the kidneys. Children with glomerulonephritis have blood and protein in their urine, and may have swelling in their body, especially in their face and legs. Find out more…
Haematuriameans there is blood in the urine (wee). If there is a lot of blood, the urine may be red or dark brown. In most children, haematuria is not serious. In some children, it is a sign that there is a problem with their kidney and these children may need special treatment. Find out more…
In haemolytic uraemic syndrome (HUS), the small blood vessels inside the kidneys are damaged. There are changes in the blood and the kidneys stop working properly.
By the time you are a teenager, you may already be used to living with a bleeding disorder. However not all people with bleeding disorders are diagnosed earlier on in life, and a bleeding disorder may be entirely new for you. The information here should be able to reassure you about your bleeding disorder, and let you get on with the enjoyment of being a teenager..
If you have a congenital heart condition, you might feel like you don't want to know every detail because it scares you. In fact you're not alone - many adults feel the same way. Find out more…
Henoch-Schönlein purpura (HSP) is a condition that affects different parts of the body. Tiny blood vessels in the body become inflamed or swollen.
It’s difficult being a young person with HIV but you’re not alone. Hear the experiences of other young people living with HIV. Find ways of accessing local support as well as the Body & Soul Beyond Boundaries programme.
Click here to watch a video from the BBC called HIV Positive: Seriously, you can't catch it from kissing.
If you’re a teenager or young adult affected by hydrocephalus, it’s important to remember that you’re not alone. You’ll find useful information to help you overcome the different challenges you may face.
Hypertension means that your blood pressure is too high. In some children, hypertension can be a serious condition. It can increase the risk of getting other diseases, especially if the hypertension continues into their adult years. Find out more…
Crohn’s Disease and Ulcerative Colitis are the two main forms of Inflammatory Bowel Disease, affecting more than 300,000 people in the UK. Yet it is largely a hidden disease, and one that causes stigma, fear and isolation – it’s thought that many people with the condition go undiagnosed and suffer in silence. It doesn’t have to be like this. Learn more….
Don’t let a medical condition change your life. Change the way you deal with it – by living as best you can with the security of a Medi band or Medic alert medical ID bracelet or wristband.
Climb is the leading patient organisation for Inherited Metabolic Disorders, supporting thousands of families worldwide.
Mitochondrial Disease is a chronic, genetic disorder that can be inherited in a number of ways. Because there are many forms of mitochondrial disease and therefore Mitochondrial disease presents very differently from individual to individual.
When a person has Mitochondrial Disease the mitochondria in the cells are not producing enough energy. Sometimes they are not very efficient or they do not work at all. Depending on which Mitochondria are affected will depend on which organs are affected.
Activities like running, swimming, cycling or even simple ones likes walking or breathing can be difficult or completely impossible if you are suffering with Mitochondrial Diseases.
For help and for more information, visit the Abel Foundation website by clicking here.
Bladder problems are not a subject that is openly discussed, hence there is a general lack of public knowledge on what it is like to have Mitrofanoff. Mitrofanoff Support offers emotional support and reassurance to anyone who may be about to have, or already has a Mitrofanoff and the people closest to them.
A multicystic dysplastic kidney (MCDK) is a kidney that has not developed normally in the womb. Instead of a working kidney, there is a bundle of cysts, which are like sacs filled with liquid. Find out more…
Living with a neuromuscular condition can be a steep learning curve, but support is available. Find out more…
In nephrotic syndrome, the kidneys leak too much protein into the urine, leading to a drop in the levels of protein in the blood. This causes swelling in the body, especially in the face, legs and feet. Find out more… About half of children with steroid-sensitive nephrotic syndrome (SSNS) have frequent relapses. This means that although the nephrotic syndrome gets better with steroids, it keeps coming back in a short space of time. Learn more about frequently relapsing nephrotic syndrome.
Neurofibromatosis type 1 is a condition that causes lumps called neurofibromas to grow on the covering of nerves. Although doctors sometimes call the lumps tumours, they are not cancer. This information sheets offers you some facts and advice to help you.
PIGN causes inflammation (swelling) in the kidneys. Young people with PIGN have blood and protein in their urine, and may have swelling in their body, especially around their face and legs. Find out more…
If you are a young person with a primary immunodeficiency, there are probably loads of questions you’d like to know the answers to, things you maybe feel a bit embarrassed to ask about or you simply don’t know who to ask. Learn more here…
Proteinuria means there is an abnormal amount of protein in the urine (wee). Normally there is very little protein that is lost in the urine. Find out more…
Renal dysplasia (or kidney dysplasia) means that a kidney does not fully develop in the womb.The affected kidney does not have normal function – which means that it does not work as well as a normal kidney. It is usually smaller than usual, and may have some cysts, which are like sacs filled with liquid. Find out more…
Renal hypoplasia (or kidney hypoplasia) means that part of a kidney does not fully develop in the womb. The kidney may only be slightly smaller than usual or it may be tiny. Because of its size, it may not work as well as a normal-sized kidney. Find out more…
Advice on what you can do if you have scoliosis or if you have just been diagnosed with it. Find out more…
Advice for young people living with sickle cell disease. You are not alone. Click here for more information.
Spina bifida literally means ‘split spine’. A fault in the development of the spinal cord and surrounding bones (vertebrae) leaves a gap or split in the spine. The spinal cord has not formed properly, and may also be damaged. Find out more…
Syncope (pronounced sin-co-pee) is a medical term for a blackout that is caused by a sudden lack of blood supply to the brain. Reflex syncope is one of the most common forms of syncope. Find out more…
Thalassaemia is a complex condition affecting the blood that requires constant monitoring and treatment. However, it is no longer just a disease of childhood; with our current level of knowledge, of treatment, of support and care there is no reason for a young person with thalassaemia to not reach their full potential.
An estimated 1 million people worldwide have TSC. Some will be diagnosed with TSC very early in life whilst others may not be diagnosed until later childhood, adolescence or adulthood. Find out more…
A urinary tract infection (UTI) is a common infection that may cause you pain when you pee. Sometimes it can result in a kidney infection. Find out more…
Von Willebrand disease is the most common type of bleeding disorder: it’s estimated that around 1% of the world population may be affected. It affects the blood’s ability to clot and can cause symptoms such as easy bruising, nosebleeds, and heavy periods. It may also be hard to stop bleeding after injury or surgery. Find out more…