Practical advice for Social Workers, Health Visitors and Therapists working with Children and Adolescents who have been ill with Encephalitis

Introduction

This guide is designed to provide those professionals who will come into contact with a child who has suffered an encephalitic illness with an overview of the general approach and steps to be taken to enable the parents and child to be reintegrated back into “normal” life.

Your Role

Whatever form your contact takes with a child who has suffered from encephalitis, you need to be aware that the problems outlined elsewhere in this pack affect famliy life, with parents becoming more anxious, apprehensive and overprotective towards their newly disabled child.

Sadly, what often happens is that these children are discharged home following acute care and receive liftle, if any, assessment or rehabilitative follow-up.  You are in a position to organise and offer support to the family at this time.

Support for  the family

The effects of encephalitis in children are not short lived and have wide ranging effects. This in turn requires a need for experienced and appropriate support for the whole family, often for an extended period of time.

• Appropriate support would include
• respite care
• organising a befriender for the child
• counselling for the parents
• advise on benefits e.g. DLA, ICA
• arrange Portage, if relevent, for under 5 affected by encephalitis
• arranging contact with relevent support groups
• frequent contact to diffuse tension caused by the behaviour problems
• arrange holiday play scheme with special needs provision if appropriate
• Rehabilitation.

Brain damage in the child causes problems with the normal stages of development and may prevent the brain from maturing fully.  Early apparent recovery does not necessarily mean that problems will not occur later.  The brain damage resulting from encephalitis can have a cumulative effect over the years.  Any rehabilitation programme needs to consider fully how these developmental problems manifest themselves in a brain damaged child and how a normal pattern of development can be facilitated and enhanced by appropriate and consistent rehabilitation.

It is common for children recovering from encephalitis to get tired very easily.  After only a short time even the simplest task will become too much.  It is important that all mental and physical activity and rest are carefully planned as part of an appropriate education and rehabilitation programme.

Sleep problems

Sleep disorders are also common.  This is partly due to the disruption of the child's normal routine while in hospital and partly due to the effect of the infection on the brain.  It is now universally accepted that as babies grow older they develop a type of chemical clock in their brain which establishes a daily "rhythm" of sleep and wakening.  This mechanism may become disrupted by diseases such as encephalitis and lead to sleeplessness, sleeping at odd times or sometimes sleeping too much.  Of these, sleeplessness causes most problems for parents, especially if the child is also over active in the daytime.  Initially, it is worthwhile trying to re-establish a normal sleeping pattern by sticking to a routine,, making the bedroom as dark as possible and taking the child straight back to bed if he/she gets out.  Sometimes however, medication may be needed for a while for children who do not sleep.  Such children often become more active in the daytime which in turn leads to more difficulty settling at night.  Medicine can be used to break this vicious circle.

Another point to be aware of is that "brain-damaged" children may be much more sensitive to side-effects of drugs than normal children.  Drugs normally used to help anxiety or sleep sometimes have the opposite effect in susceptible children.  This is not to say that they must never be used, merely that it may be a matter of trial and error to find something which suits the child.  It may be that some children with brain damage are more susceptible to food additives or colourings as well, although this has not been proved.

Personality change

Unfortunately, some children are left with permanent personality changes ­which is very difficult to cope with.  On the one hand, parents may be feeling glad that the child has survived but on the other hand be grieving for a "lost" child which has been replaced by a very different one.

These are conflicting emotions and it takes time, and sometimes professional help, to adjust and learn how to handle and react to this new situation.  Instead of knowing from experience how the child whom the parent has watched grow from a baby will react, the parent now seems to be faced with a stranger.  The tried and tested strategies used previously no longer work. This is NOT the parent's fault and it is NOT happening because the parent is over-anxious or incompetent.  The parents' learning process about the child has to begin all over again, discovering the ways the child has changed - and the ways she/he has remained the same.  It is bound to take some time for everyone concerned to readjust.  Given the appropriate level of long term support the family can adjust to their new and challenging situation.