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Toilet Training and Spina Bifida

Potty training for the non-disabled child usually begins at around 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 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. This 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.

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 on to, 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 sitting balance.

A child who is using clean intermittent catheterisation 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 catheterising regime as well.

Bowel training

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

Watch for times 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 her/him to push down gently.

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 part of the 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 adviser. Encourage the child to clean her/ himself with tissues and attend to clothing, as far as possible.

For further advice; contact your continence adviser, school nurse or Shine medical adviser.

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Did You Know?

Some babies with spina bifida are now operated on before they are born, via keyhole surgery.

Hydrocephalus can be congenital or acquired.

NPH (Normal Pressure Hydrocephalus) is an excessive build-up of fluid in the head.

Hydrocephalus is a build up of excess fluid in the brain.

Some 11 - 35% of people with Intracranial Hypertension recover spontaneously.

Most babies with spina bifida undergo surgery within 48 hours of birth.

“Every effort should be made to ensure that all children are immunized, no opportunity to immunize should be missed.”

If you have spina bifida +/or hydrocephalus you should receive the same vaccinations as any others, when going abroad.

Hydrocephalus comes from the Greek "hydro" meaning water and "cephalie", meaning brain.

Some forms of hydrocephalus require no specific treatment.

Medical advice should always be sought if shunt infection is suspected.

Shunt: a device that diverts accumulated cerebro-spinal fluid around the obstructed pathways back to the bloodstream.

Possible signs of chronic shunt blockage include: fatigue, general malaise or behavioural changes.

A shunt alert card should be carried at all times by people with hydrocephalus treated by a shunt.

Possible signs of acute shunt blockage may include: visual disturbances, drowsiness and seizures.

Symptoms of Normal Pressure Hydrocephalus are similar to Alzheimer's, Parkinson's disease or simply increasing age.

NPH (Normal Pressure Hydrocephalus) occurs most often in people aged over 60.

Benign Intracranial Hypertension aka Idiopathic Intracranial Hypertension affects about one or two in every 100,000 people!

Symptoms associated with raised intracranial pressure; headache, visual disturbances, photophobia, vomiting, problems with balance...

Diagnosis of Intracranial Hypertension is by scan + measurement of the CSF pressure.

Babies born prematurely are at increased risk of developing hydrocephalus.

Shine can raise money by recycling your used inkjet cartridges, toners or CDs and DVDs.

Para-athletes with spina bifida and hydrocephalus compete in sports ranging from cycling to dressage.

Hydrocephalus may affect memory, concentration and behaviour.

The usual treatment for hydrocephalus is to insert a shunt into the brain.

CSF stands for cerebro-spinal fluid.

Benny Bear is a teddy with hydrocephalus who helps children understand the condition.

Shine is always looking for Marathon Runners to help with fundraising.

Spina bifida occulta is a hidden form of spina bifida.


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