Epilepsy Awareness: Caring for teens living with epilepsy

It’s natural for teenagers and young adults to seek more independence, but when it comes to those living with Epilepsy, need to be able to control seizures remains essential.

Mercy Mboya recently turned 14 years and she has lived with Epilepsy since she was 2 years old. Although her seizures have greatly been controlled, his doctor, Eddie Chengo an epileptologist, at The Epilepsy Neurology Centre – Malindi, says that while younger children are usually compliant with taking their seizure medicines at their parents’ bidding, teens are more likely to be ambivalent about taking medications and may be less consistent.

“The problem is that even one missed pill can result in a seizure,” says Dr. Chengo. He also cautions that reduced seizure attacks does not always mean that they are completely gone. “If a patient forgets a pill and a seizure doesn’t happen, they may mistakenly think they no longer need the medicine,” he adds.

Caring for teens with epilepsy requires special patience and understanding. For children entering their teenhood with good self-esteem and a sense of independence, the impact of epilepsy can be minimal. But epilepsy can aggravate or create issues of low self-esteem, dependency, mood fluctuation, or behavioural difficulties in adolescents.

Compliance with drug treatment is a particular problem with teens. The reasons for this include denial of the condition, concern over side effects of the medications, and complacency about good seizure control. There is also an intense peer pressure to conform yet the drugs are a reminder that they are different. Rebellion against parental involvement in the management of their epilepsy is also another reason.

Side effects are extremely important at this age since even mild cognitive dysfunction may permanently harm education and employment prospects.

Advice on regular sleep is particularly important in idiopathic generalized epilepsy, the commonest form in teenagers. Abstinence from alcohol is also necessary as teenagers need to recognize alcohol’s potential when consumed alongside the epilepsy drugs as well as it impairing sleep quality and thus provoking seizures.

The risk of exposure to computer screens and flashing lights often concerns patients and parents. Photosensitive epilepsy may present in the teenage years, but such exposure is harmless to most teenagers.

For teens to make a successful transition into adulthood, they need to tackle issues such as:

Learning that the condition (epilepsy) is their own and does not belong to the parent or the doctor. It's a part of them, but does not need to define them. Learning about their epilepsy so they can make appropriate lifestyle choices and assume responsibility for their seizure medication and other care needs. Managing their seizures and daily lives safely. Living their life fully while navigating or adapting to safety precautions, lifestyle modifications, and the impact of epilepsy on their social, educational, and emotional lives.

 

- The writer is the National Secretary, NECC, and an Epilepsy Awareness activist