Family Adjustment

The experience of LKS is likely to be bewildering and distressing both for the child and their family. Some children may be very aware of their loss of abilities or sudden difficulties relating to their friends, and those with severe impairments of language and comprehension may find this very frightening and/ or frustrating. It is not unusual for them to develop poor self-esteem and low mood as they adjust to their losses. It is important to support the child as much as possible during this difficult time, by facilitating opportunities for them to spend time with their existing friends and also creating opportunities for them to find a new and appropriate peer group, perhaps drawn from other children with language difficulties, learning difficulties, or even from the deaf community.

For parents, there is the very painful experience of having had a normal child who is apparently lost. In addition to the anxiety and distress caused by visible seizures and the need for medication or other treatments, parents must find ways to cope with a child who suddenly cannot understand the world as they did before, who may be distressed and frightened, and who may have extremely difficult behaviours and an apparent ‘personality change’. Many parents report that the behavioural changes in their child, particularly aggression and sleep disturbance, are the hardest thing to deal with. As well as the demands of caring for their child with LKS, there are also the needs of any other siblings to consider, who may be bewildered and resentful of the attention paid to their brother or sister. Changes in the behaviour of a child with LKS can also directly lead to deterioration in sibling relationships and increases in fighting, another cause of family stress.

Siblings may need information about what has happened to their brother or sister, and guidance on their role, particularly as they too may have lost a close playmate and now be the target of aggression.

The course of LKS is characteristically variable and fluctuant, and the treatments are not certain, so it may be impossible to detect any steady progress in a child or to predict their future outcome, and this can be particularly discouraging for parents. LKS is a rare diagnosis and there may be little local knowledge or experience of the condition so that parents find themselves spending hours on the telephone trying to deal with local education and health services to ensure that their child’s developing needs are met, or faced with a large number of differing views and approaches by successive professionals. This can be daunting, frightening and exhausting. It is common for parents to feel completely overwhelmed at times, and it is possibly all the harder that there is no identifiable ‘event’ such as a head injury or infection, to explain such a devastating effect on their child. It is important for parents to identify local sources of support.