Q:
My 18-year-old has epilepsy and says it’s no one's business except her own. She plans to work full-time as a camp counselor and is then headed for college. When she was young, I would inform the people who I thought should know about her medical condition. But what now? When is it important for her to disclose her condition and when is it OK to keep it private? How can I help her be more accepting?
A:
The teen years are a critical time for people who were diagnosed with epilepsy as children. It is important to balance the need for an independent and fulfilling lifestyle, including things like driving, going to college, and holding down a job, with the need to continue managing epilepsy in a responsible manner.
Above all, any young adult with epilepsy needs to understand that, although they have a medical condition, it does not define who they are. As many as one in every 100 people has epilepsy, and epilepsy is the most common neurological disorder among teens.
The degree of independence that a teen with epilepsy can achieve will depend largely on how well seizures are controlled. The goal in any treatment plan is seizure freedom with minimal medication side effects. This is usually accomplished by taking antiepileptic drugs (AEDs). If your daughter is seizure-free, then there is no reason she cannot participate in most aspects of college life. It is really her choice whether to confide her condition to new friends. However, if she still experiences seizures, she should tell teachers and colleagues that she has epilepsy and what kind of seizures she experiences, so they know how to help should a seizure occur. She should also see a physician who fully understands her condition—a neurologist or an epileptologist. An epileptologist is a neurologist who specializes in epilepsy.
With all the life changes your daughter is experiencing, it is crucial that she continues taking her medication. Non-adherence to medication is thought to be the most common cause of poor epilepsy control. In addition, your daughter can wear a medical alert ID bracelet, necklace or watch and carry a first aid card to alert strangers and acquaintances about what to do if she does have a seizure. Medical alert jewelry now comes in a range of styles and materials from gold, silver and stainless to silicone, leather and cotton.
Another important factor to consider is continuity of care. Due to recent health care legislation, your daughter may be able to stay on your health insurance plan as a dependent up to the age of 26. Now might be a good time for you and your daughter to talk with her current health care provider about finding a new "medical home." It should be near her new residence, staffed by professionals who understand her condition, and be easy to visit when the need arises.
College can be a time to test the limits of independence. People with epilepsy need to be careful to avoid possible seizure triggers or lifestyle choices that may cause problems. Stress and lack of sleep are common seizure triggers, so getting enough rest and developing strategies for coping with increased life stress are important. In addition, alcohol and recreational drugs are seizure triggers and can be extremely dangerous in combination with many AEDs. Talk with your health care provider to find out what should be avoided.
Hormonal changes around the time of the monthly period may trigger seizures for some women. Periods are often less regular when young women are under stress, such as when they go away to college. Also, be aware that hormone levels in birth control pills may be affected by AEDs, and the pills may not be as protective as intended. It is important to talk to your doctor about dosing adjustments to ensure full pregnancy protection.
The stresses of college life may also bring on anxiety or depression, both common conditions associated with epilepsy. As a parent it will be important to keep an eye on your daughter's psychological health and continue to encourage her to participate fully but sensibly in her new life.
