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Talking to a teenager about their epilepsy

talking to daughter while sitting on couch.

Teenagers can be encouraged to gradually take an active role in managing their epilepsy. Begin by encouraging your teen to fill in their seizure diary and write down any questions they may want to ask their medical team. Encourage them to take increasing responsibility for their medication and lifestyle. This will help them cope later on. Many teens have mobile phones and might like to keep medication reminders, seizure charts and epilepsy-related apps on these. At this stage the role of lifestyle in epilepsy management becomes more important and it can be helpful to discuss seizure triggers and ways of reducing seizures such as regulating sleep and meals, and managing stress. Your teen can benefit from learning how they can help themselves reduce their seizure risk. As a parent you need to be aware of any potential implications for your teen’s lifestyle, education and career choices. Openness is key with your teenager, as they need to have accurate information and support to make better choices for daily life. The teenage years are times when the young person is striving for increased independence.

As a parent you might be concerned about whether or not your teenager will make the best choices for their own health and well-being, but it is important to balance this concern with firstly: a growing ability to educate them in their epilepsy management, and secondly: trusting them to build up their own skills in this regard.

Teens have a need to belong to a peer group and not to feel different. Someone who has epilepsy may feel different because of what they believe they can or can’t do. Some of the restrictions that epilepsy brings − having to plan activities with safety in mind, rather than fun − can be frustrating. Getting the safety balance right shouldn’t mean they can’t have fun too. However, it may seem to a teenager with epilepsy that they have to fight to avoid what they see as overprotection by their parents. They may resent having seizures or having to take medication. Seizures and the side effects of medication can leave them low on energy and affect concentration levels too. Teens may have worries about school, exams, future careers, driving and relationships. Peer pressure can be hard to resist and if it involves late nights and using alcohol or drugs it can cause problems for a young person with epilepsy. They may have concerns about telling others and how others react.

It is advisable to ask your teenager if they would like to see a recording of their seizures, if one is available. Some teenagers have told us that they would like to see their own seizures as such a viewing demystifies their epilepsy and allows them to regain some knowledge and control in their lives. Other teenagers don’t want to. Another approach to educating a teenager is to select appropriate YouTube clips of seizures with them so that they have a familiarity with what happens during their seizure. This has been beneficial for some families.

Key points: talking to your teen about their epilepsy

• Encourage your teen to take an active role in their epilepsy care.

• Suggest they use a diary or app to log seizures, triggers and side effects.

• Encourage them to ask any questions they have at appointments.

• Discuss lifestyle issues that could affect them now or later on.

• Support them when they are finding out how to be more seizure safe.

• Discuss life choices like careers and college.

• Discuss epilepsy in terms of relationships, dating and disclosure.

• Discuss any concerns they have about epilepsy, sex and sexuality.

• Be open to discussing any worries they have or changes in mood.

• Acknowledge it if they find restrictions or limitations frustrating.

• Support them if they feel they are missing out in some way.

• Reassure them that epilepsy is part of their life and doesn’t define them.

• Support them when they are finding out information that is relevant to them.

• Encourage them to seek support for themselves.

• Support them when they are making decisions about leisure activities.

Our new (2018) 'Moving Forward' booklet has comprehensive information for teens and young people with epilepsy and can be dowloaded here