National Reyes Syndrome Foundation UK

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Life After Reye's Syndrome or a Reye-Like Illness

When the child comes home from hospital

There are many adjustments required by the family suddenly faced with the fact of a brain-injured or otherwise disabled child. These children need a great deal of attention and therefore use a great deal of the family’s energy. Parents need to realise that the child who returns from hospital can be a very different child from the one who entered the hospital. His or her abilities may be very altered and indeed the child’s personality may be changed. The following traits are common following a period in hospital:-

  • Over dependency, clinging
  • Refusing to eat or overeating
  • Sleep disturbances
  • Bed wetting or soiling
  • Regression to earlier levels of behaviour
  • Tics
  • Depression/anxiety
  • Fear of hospitals and medical personnel
  • Restlessness
  • Uncommunicative states (withdrawal from contact with others)
  • Over concern with the body (hypochondria)

It is very easy for the affected child to become the centre of attention. He or she should be given responsibility equal to ability as soon as possible. Every effort should be made to return to as near as normal family life as soon as possible.

The recovering child can reduce anxiety and fear through play activities and speech depending upon his or her age. At the same time, such play can help the child to gain confidence and security through the control of the play situation. The recovering child can benefit greatly from play therapy which may be available through opportunity play groups and local toy libraries. Listening to the child patiently and lovingly will be very helpful.

As there is a grieving process following the death of a child, so there is also a grieving process for the family of a child who is diagnosed as disabled. The whole family will be involved with the care of the child and discussions about the situation should be open and frank, and all family members participating where possible.

Whatever the reaction, a family with a multiple handicapped child needs support emotionally as well as financially. The family needs to know that there are benefits and services available to help them and what these resources are. The level of service provision for families will be dependent upon where they live and their local resource priorities. Family counselling may be useful but may not be available locally.