Childhood Epilepsy

In India, the commonest cause of epilepsy is epilepsy that results from brain injury. This brain injury is typically acquired around the time of birth. It could be due to lack of oxygen or a brain infection or low blood sugars. This brain injury also can cause developmental delays.

The second commonest cause of epilepsy in India is genetic. Epilepsy genetics has advanced significantly in the last few years. Many genes which cause childhood epilepsy have been identified.

Other causes of epilepsy in childhood include malformations of the brain, scars post late childhood infections such as tuberculosis/ neurocysticercosis, rare vitamin responsive epilepsies, rare childhood degenerative/ metabolic neurological conditions, et cetera.

Choice of treatment and expected outcome is mainly dictated by the underlying cause of the epilepsy.

For example a type of epilepsy syndrome called West Syndrome that’s often seen following perinatal brain injury has a grim outcome: the seizures can be incredibly difficult to control and the development could also be significantly affected.

On the other hand, an epilepsy syndrome called Childhood Absence Epilepsy occurs because of an underlying genetic tendency. An overwhelming majority of kids easily achieve seizure freedom with the development hardly being affected - eventually the medication can be stopped.

In epilepsies caused by cortical malformation, option of epilepsy surgery will be explored earlier ideally aiming at a cure.

These examples illustrate how the underlying cause of the epilepsy influences treatment choices and sets expectations. It also guides offering supportive treatments for allied issues like developmental delay/ learning problems etc.However the cause can be elusive – especially genetic- as tests are not yet comprehensive and are quite expensive. A definitive diagnosis of the underlying cause- at least a working hypothesis regarding the cause - is crucial to manage childhood epilepsy adequately.

Epilepsy is a disease with a lot of stigma attached to it. Hence there are significant misunderstandings and misinformation around it. This lack of social acceptance makes life of patients and their families with epilepsy very difficult. It hinders seeking timely treatment; it stops them from discussing the disease openly with the extended family and friends. This can cause problems at multiple levels- for example, first-aid is not done or done incorrectly which directly affects patient safety. It leads to a life wherein children are overprotected and hence deprived of typical social experiences whilst growing up – for example missing out on picnics, sleep overs, etc. The child inadvertently grows up thinking ‘I am different – there is something wrong with me’. It eventually contributes to lack of self-esteem and self confidence.

There are many avenues for psychosocial support in India. Most epilepsy doctors will have a clinical psychologist who can offer immediate support to the patient and the family if needed. There are NGOs which offer psychosocial support in the form of epilepsy support group activities. I am part of Samman, the Mumbai branch of Indian Epilepsy Association which regularly conducts Epilepsy support group meetings, one-on-one counselling sessions apart from conducting free medical camps/ free medicines for unaffording patients. The epilepsy support group meetings are crucial because they offer a sense of belonging to patients and families when they meet others with similar experiences. They also offer a unique opportunity to come together to effect a social change.