Article by Dr.Arif Khan is a Senior Specialist Registrar in Pediatric Neurology at Leicester, London. He took his M.B.B.S. from Al Ameen Medical College, Karnataka and Diploma in Child Health from J.J.M Medical College, Karnataka. He is currently pursuing an MSc in Epilepsy from Leeds Metropolitan University, UK. He is a member of the General Medical Council, UK, Indian Medical Council, India, MDU Membership, British Medical Association, Royal College of Paediatrics and Child Health and the British Academy of Childhood Disability, UK. This is the first article in a series on Epilepsy in Children by Dr Arif Khan who will write articles on other areas of Pediatric Neurology as well.
Epilepsy is a condition in which disturbances to the brain’s normal electrical activity cause recurrent seizures or brief episodes of altered consciousness. Epilepsy comes in many forms and each person’s experience is different. The incidence of epilepsy in children is estimated to be 700 in every 100,000 children under 16 years. There are about 7 million children in Kerala below this age and therefore, about 7000 children with epilepsy. There is significant discrepancy in the care that these children receive, depending mainly on socio-economic status, geographical location and literacy.
It’s not possible to prevent epilepsy from developing, but for those with the condition the chance of attacks can be reduced. Anti-epileptic medication can prevent seizures from recurring. Once epilepsy has been diagnosed and the doctor has discussed it with you, an anti-epileptic drug (AED) will be prescribed to prevent further seizures. The choice of drugs depends on your health and the type of epilepsy you have. The initial dose will be low and will be gradually increased until the seizures stop.
When a teenager or child of any age develops seizures, the impact on the family can be enormous. The effects of epilepsy on children’s behavioral, intellectual, and social development are extremely variable. Most children with epilepsy lead normal lives and have few or no restrictions on social or physical activities. Even if the seizures are well controlled, however, the diagnosis of epilepsy and the medical visits can be frightening to them. For some children, seizures and the effects of the antiepileptic drugs cause many difficulties. Other children have additional medical and neurological problems that affect their lives. Regardless of the severity of the condition, children with epilepsy need special attention to ensure that their outlook and self-esteem are positive.
Children with epilepsy see the disorder through the window of their parents’ eyes. On hearing the diagnosis of epilepsy, parents are likely to go through a series of responses: shock, bewilderment, disappointment, hopelessness, guilt, anger, and grief, but not necessarily in that order. The adjustment period is followed by the realization that life goes on, that the child and family can enjoy life and flourish. If the parents take a positive outlook, the child’s outlook will be positive.
The situation for children with epilepsy, in the developing world remains problematic. The misrepresentation of epilepsy often results in children with the condition being socially ostracized. Most children with epilepsy do not receive the treatment they require to bring their seizures under control and which would render their epilepsy less visible to others.These children express a feeling of stigma and are more likely to report other impairments like low self-esteem, anxiety and depression which would additionally contribute to poor quality of life. They grow up into adulthood with reduced opportunities for social interaction, employment and marriage.
As responsible members of society, we ought to understand this stigma and work towards developing measures to overcome it. Both personal and public adaptation is required if the impact of stigma is to be lessened. Efforts to educate people with epilepsy and their families need to focus on the relation between knowledge, stigma and adjustment, and public education initiatives need to be further developed to promote increased awareness of epilepsy as both a social and medical disorder. Better awareness of the disease can very well reduce the misconceptions and misinformation about epilepsy that pose threats to the identity, self-esteem, security and opportunities of children with epilepsy.