ASSOCIATED DISABILITIES

lactulose or high dietary fibre are best avoided as soft stools are more difficult to evacuate.

Information for parents and professionals is avai- lable from Education, Resources and Information for Childhood Continence (ERIC) in the form of book- lets and advice [29].

If constipation does occur it may be signaled by ‘over-flow’ diarrhea. Clear out using Polyethylene Glycol based osmotic laxative granules suitably mixed with flavored drink is usually satisfactory. If the diarrhea is secondary to an overactive bowel then attention to dietary factors with the addition of anti- diarrheals may be effective.

Anal tampons are useful when swimming but should only be used with a bowel evacuation program. When fecal incontinence is associated with urgency and/or frequency or urge incontinence, intravesical electrical stimulation to decrease involuntary detru- sor contractions and increase bladder capacity / sen- sation has also shown to decrease the number of epi- sodes of fecal incontinence although not the number of bowel movements [45].

As soon as the child is able to understand and coope- rate they should be taught the anatomy and basic functions of bladder and bowel. Showing pictures and using a small mirror can help them to identify their urethra and anus. They need to be able to iden- tify these structures accurately with their eyes closed and then can practice inserting mini-enemas or sup- positories while lying back on pillows with their legs apart. After 10 minutes they can transfer to the toilet to allow evacuation to take place.

Problems are related to associated lack of co-ordina- tion, poor spacial awareness and fine motor difficul- ties and in spinal lesions with impaired sensation in the lower half of the body. Care needs to be taken regarding the position of the child on the toilet, making sure the child’s feet are supported and he or she is comfortable. The child should not be left too long in this position.

Some children have memory and attentional pro- blems and prompts with a bleeper device may be useful to ensure regular toileting. They may respond well to continual encouragement with rewards for sticking to a regular daily routine that is carefully broken down into step by step manageable stages. If this conventional management fails or becomes unworkable for any reason, then a caecostomy with regular daily or alternate day ante colonic enemas are known to work well although there is the inevitable possibility of leakage or stenosis at the stoma site for

some [46]. Children do need to be able to sit for up to an hour on the toilet to allow their bowel to empty completely using this method and this factor needs to be considered in the pre-op assessment. Sometimes additional aids may be needed if the child has an associated handicap such as a severe scoliosis. Supervision from a multidisciplinary team in both home and school environments is imperative to esta- blish care plans and ensure a smooth transition if the child should move house or school. Pediatrician, Occupational Therapist, Physiotherapist and Specia- list Pediatric Continence Advisors all have a role to play.

To ensure support is provided at school a special sta- tement may be required and this should reflect in detail the support the child requires for his/ her conti- nence needs in school. Individual care plans need to be revised at important change over periods and in particular when transition to adult services is planned. If children do require intimate help with their conti- nence needs in school, training of staff and consent issues become important and must be resolved to the satisfaction of care staff, child and family.

2. F

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When the mega rectum becomes so large that it is impossible to keep clear with oral laxatives or even with regular enemas or suppositories then considera- tion of a caecostomy to allow antegrade continence enemas [ACE] is now a well recognized alternative. Results from this procedure are generally good with 85% attaining continence and can sometimes allow the mega rectum to resolve [59]. However, this approach does not suit all children with the most common complication being stoma stenosis. The child also needs to be able to co-operate with the enema routine (see under practical management points).

A further approach has been to surgically reduce the affected bowel. This has also shown good results [69] but has only been undertaken in older children who are not responding to a conservative treatment. Another new avenue of approach may be to tackle the hypertrophy of the internal anal sphincter either by internal anal myectomy or with injections of intras- phincteric botulinum toxin injections. Early evidence from a randomized control trial suggests both may be effective in allowing better and more complete emp- tying of the rectum with the advantage that the toxin injections should be without the long term potential side effects resulting from surgery [70].

Several studies have demonstrated the chronicity of this condition. The prognosis seems better in those diagnosed before the age of 4 years with recovery in 63% of children followed up by Loening Baucke [71]. In older children approximately 50% will have discontinued laxatives at 12 month follow-up, with a further 20% coming off laxatives in the next 2 years [72,73,74]. In Clayden’s series of over 300 children with severe constipation, laxative treatment was required by 56 % for over 12 months [31]. At a mean of 6.8 years after treatment nearly 70% of 43 consti- pated children reviewed by Sutphen were entirely asymptomatic. Mild constipation persisted in 13. Fecal incontinence persisted in 3 of the 17 children who first reported it [75].

Most children have gained bowel control by 4 years of age.

The prevalence of fecal incontinence is around 1.5% at 10 – 11 years of age.

A comprehensive and holistic assessment is necessa- ry with consideration of family, psychological and educational issues.

The few children with organic causes of fecal incon- tinence must be identified, investigated and managed appropriately. Children with a neurogenic bowel or congenital bowel anomalies should be managed within specialist pediatric units.

Functional results of reconstruction of congenital anorectal anomalies (e.g. imperforate anus and Hirschsprung’s disease) may be poor. These children require long term follow-up.

The vast majority of soiling children have functional retentive soiling secondary to constipation with no underlying organic abnormality. Stool holding is a common antecedent of constipation.

Psychological and behavioral problems are common and are usually secondary to the soiling. These improve when the child becomes continent.

Functional non-retentive soiling is less common and may be due to delay in establishing bowel control or to significant psychological and behavioral problems associated with other family and relationship diffi- culties.

Biofeedback training has been found useful for some children with functional non-retentive soiling. A multidisciplinary team approach engaging both parents/carers and school staff is important in the management of any child with fecal incontinence of any cause but essential for children with a neuroge- nic bowel.

Parents and children need a clear understanding of the reasons why soiling is occurring in order to pre- vent intolerance and encourage compliance with the program. Behavioral issues need to be addressed in conjunction with a combined laxative and toileting program.

A number of reports indicate that treatment with macrogols (based on polyethylene glycol) is proving useful for both “clear out” and maintenance in chil- dren with functional fecal retention.

Laxative therapy may be needed for many months to maintain regular bowel actions.

Outcome is generally better when the condition is diagnosed early.

Ante-colonic-enemas [ACE] are showing good long term results in both neurogenic bowel and refractory chronic constipation.

(See algorithm for management of fecal incontinen- ce in children (Figure 18).

There is often a considerable delay before chil- dren with fecal incontinence present to knowled- geable health professionals indicating a need for general health promotion and professional trai- ning in this area.

Definitions and classification of fecal incontinence are not yet universally agreed and would benefit from clarification. Classification needs to take into account the development of further subdivi- sions by causal mechanisms within this group, which will assist research.

The research base in this common and important condition is still generally poor with no recent trials of laxative therapy suitable for a systematic review.

Levels of evidence and research into the most common cause of fecal incontinence in children – functional retentive soiling - are generally poor although combined laxative and behavioral toile- ting programs have been shown to be more effec- tive than either alone.

X. RECOMMENDATIONS