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Epilepsy and Raising Teens

This post will examine a variety of issues when raising adolescents with epilepsy or seizure disorders. I specifically want to zero in on teenagers because teenagers tend to tune out their parents due to normal hormonal changes, and the perfectly healthy need to feel independent and find their own way. Like so many diseases, epilepsy is not a one size fits all condition. I will briefly describe the illness and how many people are afflicted by it, but for more specific information you can access the Epilepsy Foundation website in your city, WebMD, your personal neurologist and other resources. Fifty million people worldwide suffer from epilepsy. Three million people in the United States are affected by epilepsy. It cuts across socioeconomic strata, religions and genders. Epilepsy is a brain disorder in which a person has more than two seizures over a period of time. Seizures are defined as episodes of disturbed neurological activity that creates changes in attention and or behavior. The symptoms vary in each patient with some seizures being so subtle as to be almost unseen with others resulting in a complete loss of consciousness for a period of time. My own neurologist describes it aptly “as sticking your fingers into an electrical socket and having a resulting shock.” It often takes quite a while before the accurate medication is pinpointed to control the illness and, in some cases, control is unpredictable. In other cases, surgery has resulted in a measure of success. Unfortunately there is no one size fits all solutions leaving family members (both caregivers and patients) frustrated, depressed and hopeless. So how do you deal with this illness particularly if it affects your adolescent child? Can they have goals, like marrying and having children? Are your offspring able to have any control over their medical situations? I want to be clear here. I am not a medical doctor. Any medical questions should be directed to a neurologist or epileptologist. However, we can have a discussion about how to create a life with a future. Remember, some forms of epilepsy can be under substantial control. Parents with children who have chronic illnesses naturally want to protect their children from other children who might be cruel, from the results of potential accidents due to seizures, and from anything they can’t predict. Unfortunately adolescence is the one time when it’s most difficult for a parent to have any influence over their child. Most young people want their independence. This is challenging for them when their parents are hovering over them worrying about potential negative repercussions from seizures. Having been diagnosed with epilepsy at seventeen, I was very fortunate in that my parents allowed me to go to a university 6000 miles away from home only 8 months later. I was diagnosed with “grand mal” (or tonic clonic) seizures. This was an extremely difficult decision for my parents to make. And while the transition due to the medication, the chronicity of the illness, and the distance made the first year of college very difficult, it also taught me numerous coping skills. I began learning how to advocate for myself in the doctor’s office, compliance with taking the right medications, receiving regular doctor’s care and learning how to interact in completely new social settings. There were unexpected side effects. These included some
depression from the medication, frustration with not being able to drive and learning how to accommodate myself to young people who didn’t have similar issues. It took time to realize that I had to create my own place in the world. Even today, I have to accommodate myself to the changes that the disease brings me. Most of the time I view these as challenges to overcome. I try to sort out what I have control over. In this area there are some very specific things; for example, I don’t drink alcohol. Alcohol has a deleterious effect on medication and on epilepsy. I try to exercise and eat healthy foods. I try to sleep regular hours and minimize my stress level.
As I mentioned earlier, realistically speaking, parents have very little control over teenagers. What you can do is believe in them. You can teach them how to build strong support systems. You can listen to them when they talk with you and you can allow them to fall on their backsides while communicating that you know that they will make the right decision in the years ahead. You can teach your children how to tweak situations and how to deal with disappointment. All of us have to deal with frustration in some areas of our lives. How we do this creates the people we become. To answer the original questions, in many cases, people with seizure disorders may have normal lives. Many individuals with this diagnosis can go to college, get married, may have children; may engage in hobbies, a variety of careers and have, consequently, full lives. It is true that you may not be able to jump out airplanes with a parachute or even drive, but that doesn’t mean you can’t be completely fulfilled. Sometimes it is easier to identify with a live example. In my case I have been and am married, I have a grown daughter, two dogs, a previous career working with abused kids, and am now embarking on a second career as a marriage and family therapist. I was able to obtain my bachelor’s and master’s degrees along with a marriage and family therapist’s license in the state of California. Yes I have had to make concessions. I have had to work with a neurologist. I had had to take medications. There have been periods in my life where I wasn’t permitted to drive a vehicle. I still do not drink alcohol nor take illegal drugs. Sometimes I’m scared, sometimes I’m angry, and sometimes depressed. I always know these emotional states are temporary. I always try to spend more time living in the present rather than worrying about the future. No, I never know when I will have another seizure but these do not govern my life or significantly alter my goals. By and large I consider myself happy, successful and hopeful.
With some safeguards, your teenagers have all that same potential waiting for them.