Content for Families, Carers and Professionals

Continence/Bowel Care

Your child’s medical and healthcare needs are the responsibility of your local NHS health services. This will include any medical equipment, such as special beds, bed equipment, hoists and aids to help with incontinence, mobility or hearing (NHS Choices 2015).

Incontinence is when you unintentionally pass urine or stools because you are unable to control your bladder or bowels.

We at CDKL5 UK feel that it is important to acknowledge that although the majority of children with CDKL5 that we are aware of do have issues with incontinence it is not a given. We do have children that have successfully gained some toilet training skills and we recognise that all our children are individuals. This is why we feel that it is important to have a proper assessment by a trained health professional. Advice and support can be obtained from your local NHS Continence Service which will be staffed by Specialist Nurses. You do not need to obtain a GP referral to book an appointment with this service you are able to contact them directly. Although it is important to know that if you prefer your GP or School Nurse may also be able to do this for you.

Once you've been assessed, the healthcare professionals treating you will say which incontinence products are available on the NHS. If you're eligible for incontinence products, you should be given as many as you need. If this doesn't happen, or if you have any concerns, tell the healthcare professionals treating you. You can also seek advice from the Patient Advice and Liaison Service (PALS).

In August 2010, David Cameron wrote to Mumsnet and the Every Disabled Child Matters (EDCM) campaign in response to emails from Mumsnet posters and supporters of EDCM. He said that the Secretary of State for Health has now asked the Chief Executive of the NHS to tell PCTs that: ‘Pads (nappies) should be provided in quantities appropriate

Mumsnet and EDCM launched this campaign in response to a commitment to address nappy restrictions that the PM gave following a Mumsnet web chat during the election campaign. The message that the Chief Executive of the NHS has given to PCT Chief Executives is that they should act in accordance with Good Practice in Continence Services, the 2000 Department of Health guidance on continence provision.

At CDKL5 UK we recognise that as our children are unable to express their needs in conventional ways it is important to be aware of some basic facts that can help us be aware of potential problems in our children’s continence care.

Maintaining a Healthy Bowel

The digestive system can get upset very quickly and so keeping it healthy is very important. A few simple steps could help it keep in good working order;

  • Maintaining a healthy balanced diet rich in fibre, fruit, vegetables, starchy carbohydrates, and protein and dairy.
  • Maintaining a healthy fluid intake, around 6-8 glasses per day.
  • Consider adding a probiotic daily (under guidance) to maintain the good gut bacteria.

Factors that can affect the bowel

  • Antibiotics, as they can destroy the healthy good gut bacteria.
  • Sleep, the digestive system needs to rest as the body sleeps and so little or no sleep can affect it tremendously.
  • Stress, the digestive system is one of the first to feel the effects of stress.
  • Dehydration, little or no fluids can lead to constipation.

Symptoms of constipation

  • Having your bowels open less than three times per week.
  • Foul smelling wind.
  • Painful tummy.
  • Stools appear like hard pellets.
  • Pain when opening your bowels.
  • Straining.
  • Poor appetite.
  • Unhappy, angry or an irritable mood.

Treatments for constipation

  • Increase the fibre, fruit and vegetable intake.
  • Prune juice (30-50 mls) daily followed by a hot drink.
  • Hot drinks.
  • Increase fluid intake.
  • Check the side effects of regular medication.
  • Laxatives prescribed under medical guidance.
  • Seek medical advice.

If these symptoms persist we at CDKL5 UK feel that it may be prudent to introduce a regular bowel maintenance regime agreed and devised by a medical professional.

Maintaining a Healthy Bladder

Trying to drink at least 1.5 - 2 litres (6-8 glasses) of fluid each day will help to keep the bladder working properly. When you do not drink enough, the bladder gets used to holding smaller amounts of urine and can become sensitive. As we previously stated it can also cause constipation.  When the bowel does not empty properly it will swell up and push down onto the bladder.

Factors that can affect the bladder

  • Fluid intake.
  • Some medication.
  • Some fruits can be acidic causing irritation.
  • Caffeine.
  • Fizzy drinks
  • Infections, otherwise known as UTI’s (Urinary Tract Infection).

Symptoms of Urinary Tract Infections

  • A high temperature.
  • Vomiting.
  • Tiredness.
  • Irritability.
  • Pain or a burning sensation when urinating.
  • Needing to urinate frequently.
  • Pain in their tummy (abdomen), side or lower back.
  • Unpleasant smelling urine.
  • Blood in the urine.

Treatments for Bladder Infections

  • A good fluid intake will help to keep the urine diluted and will help to ‘flush out any infection’.
  • Cranberry juice is slightly acidic and as so has therapeutic properties when an infection is suspected.
  • Antibiotics.

Continence is an important issue with our children and we feel that as our daily caring role with our children is hard enough. Being able to spot any potential problems is a vital skill for us as parents.