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Toilet Training - spina bifida and hydrocephalus

Potty training for the non-disabled child is usually begins at the age of 18 months to two years, and the child is usually ‘trained’ by day at around two-and-a half years. Every child is different and it is advisable to watch for signs in the child’s development which may suggest he/she is ready to begin potty training, such as: awareness that they are passing urine or having bowel action; waking from naps with a dry nappy; asking to have their nappy changed.

Start at a time when you can spend a lot of time with your child, when your child seems happy and there are no major distractions or stressful events in his/her life(new brother or sister, divorce, moving, new carer etc).

A young child with Hydrocephalus may have trouble balancing when sitting. The potty or toilet should provide a stable and secure position, with a comfortable, supportive seat. If necessary, rails (or something for the child to holds onto) will give stability to the upper body. The child should be able to place his/her feet flat on the floor or a box/plinth. An occupational therapist should be able to help with equipment if the child has poor sitting balance.

Many children with Hydrocephalus learn better when there is a routine. Before you begin toilet training, plan what the routine will be and stick to it until a habit is established (e.g. Where the potty will be, what time to ‘try’, weather to use pants or ‘pull-ups’). Talk through each step of the routine each time, to reinforce it, being as consistent as you can. Watch the child for times he/she is most likely to have a bowel action, e.g. after breakfast, and try those times first.

Reinforce good behaviour i.e., sitting on the potty, with praise. If nothing happens, say nothing. If it is acceptable to your family, take your child into the toilet when you or family members go to reinforce what is expected.

It may take much longer than with other children, so be patient. Only stop as the very last resort, as children with Hydrocephalus can become used to wearing nappies through habit and this can be hard to break.

Once a good habit is established, you can gently vary the routine, to allow your child to deal with changes and become more flexible. Children with Hydrocephalus may have relapses in the toilet training when starting school; there is so much going on that the child may not listen to the body’s signals. They may need reminding to go to the toilet and may need showing several times where the toilet is. Classroom staff should be made aware of this.

Spina Bifida and Toilet Training

Every child is different and it is advisable to watch for signs in the child’s development which may suggest he/she is ready to begin potty training, such as: awareness that they are passing urine or having a bowel action, waking from naps with a dry nappy, asking to have their nappy changed.

For children with Spina Bifida, bladder and bowel continence should be addressed at the same time and the way the bladder works should be assessed in infancy in order to protect the kidneys from damage. There are many tests that can be done to check that the urinary system is functioning as well as possible. The tests vary from a simple blood test to more invasive procedures. All tests performed are done with your consent and should be fully explained to you beforehand. You may not necessarily have all the tests and or procedures performed. For more information see “bowel & bladder investigations and procedures” information sheet. Assessments should be done before starting toilet training and appropriate management should be in place.

Toilet training for a child with Spina Bifida is likely to be quite different from that of other children. Very often, damage to nerve pathways, which coordinate the bladder and bowel function and promote the sensations, mean that control cannot be learnt in the usual way.

Helping to Achieve Urinary Continence and Bowel Control?

The age at which a child begins to work towards urinary continence is individualised based on their physical capabilities and social situation. It is practical to consider urinary continence by the time a child enters school. While this is a realistic goal, it may not be appropriate for all children. In order to gain urinary continence, it will be important to adhere to a consistent programme. This programme may include medications, intermittent catheterization, and possibly operative reconstruction. When the urinary continence programme is initiated, it should be continued while the child is in a structured school environment.

It is practical to consider vowel continence at the same time or before a child is working toward urinary continence. It is essential for a child to maintain an appropriate stool consistency which can be achieved by a diet that includes plenty of fluid and fibre. Some children benefit from fibre supplementation. Even when the stool is of a normal consistency, some children need to have assistance when eliminating the stool from their rectum and colon. There are various techniques recommended including digital manipulation, rectal suppositories, enemas and washout therapy. When enemas are employed, only the very terminal end of the colon is washed free of the stool leaving the bulk of the stool in the remainder of the colon.

Bladder Training

Toilet training should begin at around two years of age. The toilet should be comfortable and not damage pressure areas (the skin on the buttocks and the backs of the legs). A young child with Spina Bifida may have difficulty balancing when sitting. The potty or toilet should provide a stable and secure position, with a comfortable, supportive seat. If necessary, there should be rails, or something for the child to hold onto, to give stability to the upper body. The child should be able to place his/her feet flat on the floor or a box/plinth. An occupational therapist should be able to help with equipment if the child has poor seating balance. A child who is using clean intermittent catherization can also be encouraged to sit on the toilet and pass urine, although it is not always necessary. It is essential to continue with the catheterisation regime as well.

Do’s and Don’ts for healthy kidneys, bladder and urinary tract:

  • Encourage the drinking of plenty of liquids, especially water, - start with 8 glasses a day – the aim should be 2 litres a day as your child increases in age. This should be taken at regular intervals during the day with fewer intakes in the evening and at night, and not all in one go. Fluid intake is extremely important in reducing UTIs (see Urinary Tract Infections) if this routine and habit is started early it will hold well for adolescents and adult continence management.
  • By drinking sufficient water each day, this will keep the system well flushed, especially in hot weather when a lot of fluid is lost through sweat. By not drinking enough water, the urine becomes dark and concentrated and can become a good breeding ground for germs and cause infections.
  • Not only will regular fluids keep the system well flushed it also helps with concentration which is extremely important particularly for the school aged child.
  • Cranberry juice (one or two glasses per day) can help prevent E. Coli bacteria and can assist with keeping kidneys clean and flushed
  • Avoid fizzy drinks and don’t drink too much tea, cocoa or cola as caffeine stimulated the bladder muscle.

Bowel Training

Bowel management and training should start in babyhood to be effective, as hard stools can stretch the colon or bowel over a long period.

The aim of bowel continence training is to achieve regular bowel motion, to avoid ‘accidents’ and to be clean, healthy and comfortable.

Training starts with the pre-school child and may take many years and a lot of perseverance, working with the child’s continence advisor.

Bowel training depends on developing a habit of opening the bowels as near to the same time each day as possible and cleaning a large amount of the bowels each time. Do not allow constipation to develop. Ideally, the faeces should be firm and formed.

Watch for times in the day in the day when the child opens his/her bowels to see if a pattern emerges. The bowel is more active after meals, especially breakfast. Sit the child on the toilet at these times and encourage him/her to push down gently sometimes this can be difficult for very young children so to encourage this push motion you can use blowing bubbles or blowing into a glass of water with a straw. Also, the knees of the child should be slightly above the hip bone this can be made easier by using a footrest.

To encourage this, try tickling to get the child to laugh or the child could blow a party toy(not balloons and always under supervision) and the effects of gravity will also help. Even if there is no result, continue to sit the child on the toilet after meals. However, the child should not sit on the toilet for longer than 5 minutes.

All programmes will involve sitting on the toilet even when there is no sensation (feeling) of a need for bowel action. If it becomes a normal daily routine from early childhood, it is less likely to become a major issue later on. If this is unsuccessful, it may be necessary to seek advice from your continence advisor. Encourage the child to clean her/himself with tissues and attend to clothing, as far as possible.

Dietary

  • Fibre is important in the diet to establish a soft stool and prevent constipation
  • Foods rich in fibre include cereals, whole-wheat bread, potatoes, fruit, vegetables, and pasta
  • Keep dairy content low – milk, cheese, yoghurts.
  • Omit sweets, chocolate, crisps and general junk food.
  • Allow one small treat per day, including fruit.

Fluid Intake

  • High fluid intake recommended.
  • Avoid milk as a thirst quencher
  • Avoid drinks high in sugar content.
  • Encourage fruit juices, water.

Regular Toilet Habits

  • The aim is to establish a regular time for bowel movements to occur.
  • To work for accident free days.

Advice for parents

  • Pick a time of day that suits both parent and child e.g., after evening meal.
  • Sit child on the potty for no longer than 10 to 15 minutes, 5-10 minutes after a meal.
  • The child’s knees should be higher than the buttocks. Use a footrest if using toilet.
  • Teach the child to push by coughing or grunting to ensure abdominal activity.
  • Praise the child if successful. If not, try at the same time next day.
  • The use of suppositories e.g., glycerine, microlax may be necessary to establish a routine.

Toilet training has many implications to a child’s development. For children with Spina Bifida, it is important to assess their needs. Then you can start a bowel and bladder control program. It is important to know that no one with Spina Bifida should live with uncontrolled bowel or bladder problems. Good health care and tailored programs can help.

For further advice, contact your Family Support Worker who can put you in touch with SBHI’s Continence Advisor if necessary.