Teenagers with Epilepsy

During adolescence there are many biological changes that affect physical, mental, and emotional development. As children reach their teens, they become increasingly self-reflective and sensitive to how others view them. In developmental terms, the major task of adolescence is transitioning into a more integrated personality with a stronger sense of self-identity. This evolves as youths become increasingly more autonomous, spend more time with peers, and eventually prepare for secondary education or employment after high school. For teens without health problems, the transition through adolescence can be challenging. For those with epilepsy, the transition can be particularly difficult.

Pattern for healthy development in teenagers

Physical development:

  • rapid gains in height and weight
  • puberty and development of secondary sex characteristics
  • continued brain development

Cognitive development:

  • developing advanced reasoning skills
  • developing abstract thinking skills
  • developing the ability to think about thinking

Psychosocial development:

  • establishing an identity
  • establishing autonomy
  • establishing intimacy
  • becoming comfortable with one’s sexuality
  • achievement

Impact of epilepsy on teenagers

As indicated earlier, the adolescent period can be particularly challenging for youth with epilepsy and their parents. For example, adolescence is often the time when seizure management and good lifestyle choices become an issue, including adherence to medication regimens and maintaining healthy eating habits and sleep patterns. There are many factors such as peer pressure, parties and other social events, part-time jobs, and a busy life in general that may interfere with the teen’s ability to translate this new awareness into good self-care. The unpredictable nature of seizures and epilepsy has a major impact on most areas of the teen’s life, including aspects of their development, such as independence, body image, identity, sexuality, socialization, and self-esteem. Feelings of embarrassment or frustration relating to their epilepsy can be accentuated during the teen years. This in turn can result in poor self-esteem. In addition, the onset of puberty can sometimes alter seizure patterns, requiring additional clinic visits, changing medications, or altering medication doses.

Parents can help to minimize some problems by being aware of what may happen to their teens and discussing issues openly with them; acting as positive role-models; and assisting their teens in developing positive coping strategies to deal with their epilepsy and its management. The epilepsy care team, local epilepsy chapters, and other "role models," such as older youths or adults who have epilepsy, can all provide support during the challenges of the teen years.

Epilepsy Canada has an information section called "Teen’s Corner" on their website, which discusses many of the issues faced by teens with epilepsy. It is a site you can recommend to your teen where they can read about issues related to teens and epilepsy. Also encourage your teenager to check out the Epilepsy Checklist for Teens and learn what they needs to know about epilepsy.

Teens with epilepsy may continue to experience learning, emotional and behaviour problems, as well as difficulties with social adjustment.

At around 18 years of age, your child will need to transition from child epilepsy care to adult epilepsy care. This will involve an adult neurologist and an adult epilepsy care team in the community or adult care facility. Begin the discussion about your teen’s transition to adult epilepsy care with your child’s epilepsy care team well before your child turns 18. Experts in the care of adults with epilepsy suggest that you start preparing your child for the transition to adult care when he is as young as 11 or 12. This will provide time for him to start thinking about assuming some responsibility for his own care well before he starts meeting with an adult neurologist.

Coping strategies

Keep lines of communication open with your teen so you know what he is experiencing, understand difficulties he may be having, and are able to offer him the appropriate help at the right time. Encourage your teen to express his concerns about his condition and together find ways to solve problems.

Make sure your teen has information about epilepsy that is related to his or her stage of development, such as the effect of certain medications in reducing the effectiveness of birth control, potential changes in seizure patterns, or the importance of adequate sleep during a rapid period of growth. In addition to yourself, the epilepsy care team and epilepsy organizations can help educate your teen. Encourage your teen to ask questions of the epilepsy care team.

Encourage independence, increased responsibility, and self-care during the teen years. It is, however, important to ensure that your teen is ready, willing, and able to take on the parts of epilepsy management before you fully hand over a responsibility. Continue to stay involved and informed, and be ready to help when needed.

Teens should be encouraged to develop their own relationships with members of their epilepsy care team. Encourage your teen to have some private time with the doctor or nurse at each clinic visit. It’s natural for parents to want to stay informed, discuss issues, and be part of developing the plan for the next phase. However, teens should be able to expect confidentiality in certain aspects of their health care.

Parents, teens, and the epilepsy care team may have different expectations regarding the goals of seizure management. Goals and expectations should be reviewed together, on a regular basis, to make sure they are still appropriate.

Because seizures may cause forgetfulness, a parent may need to build in some way of ensuring that their teen is taking his medications at the right time. Because a teen may resent constant reminders about whether or not they have taken their medication, it is important to discuss and agree how this can be achieved with your teen so that the issue does not become a source of frustration for the teen and excessive worry for you as the parent. For example, parents can provide the teen with a pill box with days and times medications need to be taken, or have the teen wear a watch that will beep when a medication is due. Instead of checking with your teen multiple times a day about whether he has taken his medication, you can agree with him to check the pill box at the end of the day or at the end of the week. Other tricks for remembering medications are discussed below.

All teens hate to be nagged, but most don’t mind a little help. A schedule of medications and a diary of seizures, symptoms, and doctor’s appointments may be helpful to your teen in remembering the routine tasks.

Praise your teenager freely for responsibilities assumed and handled well. There is no danger of giving him an inflated ego. Positive reinforcement will only result in more of the desired behaviour.

Stay involved in your child’s epilepsy care, at some level, right through his teen years. Even the most independent teen is going to need back-up during particularly stressful periods, such as a crisis in a relationship, an illness, or during a time of too many competing priorities. Be prepared to support or intervene with your teen as necessary. Interdependence is not a step backward. It’s just evidence of the family working together to ensure that the teen’s health is kept up at all times.

As with all teenaged children in the family, teach your teen the importance of a healthy lifestyle and how to achieve it in a practical manner. Encourage him to get proper rest, stick to medication schedules, and be physically active. Discourage drinking alcohol and drug use that might affect seizure control. Involve the epilepsy care team in encouraging a healthy lifestyle for your teen.

When needed, involve a health professional (such as a social worker, psychologist, or specialist in adolescent medicine) with expertise in dealing with teen issues. Some of these individuals may be affiliated with the epilepsy care team or the hospital’s neurology department. This is especially important if there is continued risky behaviour (such as sexual activity which might result in a pregnancy) or if your child seems unable to cope with particular emotional issues.

Continue a close relationship with teachers and the school to be aware of any learning and behaviour issues, and address them immediately. Use the epilepsy care team, school counsellors, psychologists, extra classes, tutors, and other support systems as necessary.

Epilepsy Canada has a comprehensive and easy-to-understand information section called "Teen’s Corner" on their website, which discusses many teenage epilepsy issues in a practical way. It’s a site you can recommend your teen to go to and read up for himself on issues surrounding epilepsy.

Tricks for remembering medications

It's not easy to remember when to take medicine. Teens have busy lives and it may slip their minds, or it may be a burden they'd rather forget. This is especially true if they are not experiencing symptoms that remind them of the need to take medication. Having to take drugs is also an unwelcome reminder that epilepsy is part of their life. It is, however, a critical part of treatment and must be an area for which they gradually assume responsibility. Here are some tips you can encourage your teen to adopt:

  • Incorporate pill taking into the daily routine.
  • Connect it with another daily habit, like walking the dog in the morning or teeth brushing at night.
  • Encourage the use of a pill container so it's clear what needs to be taken when. A pill container is also a visual reminder that lets you and your teen notice if pills are missed.
  • If your teen doesn't want to carry a pill container around, consider a fake watch, ring, or earrings that are designed to "hide" pills.
  • Consider electronic reminders, by way of a computer, personal digital assistant, or digital wristwatch equipped with an alarm.
  • If your teen breaks routine by going away for the weekend, for example, there is an increased risk of pills being forgotten. Make sure medicine is stored some place obvious.

Encouraging a positive attitude

It may sound like a cliché, but a positive attitude will go a long way to helping your child or teen manage his epilepsy. It is normal for young people with epilepsy to feel overwhelmed at times or to feel like no one understands them. But if your teen feels angry or resentful about his epilepsy, or is sad or having trouble coping, he may find it difficult to make the choices he needs to stay well. The epilepsy care team is there to help. Talk to them for ideas or encourage your child to talk to them, either with you present or privately. The epilepsy care team might even be able to put your teen in touch with others the same age who have epilepsy and who understand how he is feeling.

Healthy living in the teenaged years

It’s not unusual for some teens to try risky behaviours, such as drug or alcohol use. For teens with epilepsy, these behaviours can be particularly hazardous.

It’s important to talk to teens about the risks associated with these behaviours and ensure they have the right information to make wise choices. The epilepsy care team can also discuss these issues with your teen.

Parents also need to understand that routines in life that help to manage epilepsy may become a target for risk-taking behaviours. Teens may skip meals, stay up late and get insufficient sleep, or skip a dose of medication. They may not wear their medical alert bracelet, which offers important information in the case of an emergency.

Skipping a dose of anti-epileptic medication can result in seizures and missing school days. Teach your teen early about the importance of a healthy lifestyle, adequate sleep, taking medications on time, activity, and participation, and help him practice these things.

Alcohol and street drugs

It’s not unusual for teenagers to be offered alcohol or drugs, and to be faced with the decision of whether or not to try them. Teens with epilepsy, though, have to think about these decisions carefully because alcohol and drugs can adversely interact with anti-epileptic medications and increase the chance of seizures. Some teens with epilepsy have taken so many pills in their lives that they are not interested in trying drugs or alcohol; however, you may wish to discuss the following with your teen.

Alcohol

A teen who is under the influence of alcohol may miss the early warning symptoms of a seizure or forget to take his medications on time. Others who have been drinking may not recognize the problem. Or they may assume the teen’s unusual behaviour is due to the effects of alcohol, rather than a seizure. Alcohol may also contribute to poor judgement and risky behaviours such as unprotected sex or drinking and driving. Your teen will need to think carefully about drinking and take the necessary steps to drink safely and responsibly if he chooses to do so.

Marijuana and other drugs

A person under the influence of marijuana may miss the early warning symptoms of a seizure or forget to take medications on time.

Other street drugs may interact with anti-epileptic medication or trigger a seizure. They may also contribute to poor judgement and risky behaviours.

Ideas for talking about alcohol and drug use with your teen

The legal drinking age in Ontario is 19 years old. It may differ from province to province.

As a general rule, it’s better to teach teens with epilepsy about safe alcohol use rather than forbid the use of alcohol. You can’t assume that your teen will never experiment with alcohol.

Here are a few tips that can help your teen drink safely and responsibly:

  • Wear a medical alert bracelet. If anything does happen, the medical information is available.
  • Too much alcohol use is very risky.
  • If your teen chooses to drink, drinking light beer or diluting white wine with club soda may be better choices.
  • Don’t drink alcohol to quench thirst. Choose water or soft drinks instead.
  • Never drink on an empty stomach.
  • Drink slowly and don’t have more than two drinks. Have non-alcoholic drinks instead.
  • Stick with a friend who knows your child has epilepsy, can recognize the onset of a seizure, and knows what to do in case of a seizure, including who to call.

If your teen decides not to drink, it can sometimes be hard to be the only one not drinking. He may feel peer pressure to drink even though he doesn’t want to. Here are some ideas of things for your teen to say if anyone asks why he isn’t drinking:

  • If someone asks if he would like a drink, he could just say, "No thank you." (Polite and to the point.)
  • If your teen is comfortable talking about his epilepsy, he could say, "It’s not good for my epilepsy" or "It may cause me to have a seizure." Real friends won’t try to force him to do something that could make him sick.
  • Make a joke of it: "No thanks, I’m already on more drugs than anyone else here!"

Sexuality and birth control

Educate your teens about the importance of protection from sexually transmitted diseases (STDs) and unwanted pregnancy. If you wish, you can involve your child’s epilepsy team in discussing these topics with your child.

To prevent STDs, condoms are a must for all sexually active teens. To prevent pregnancy, an additional form of birth control, such as the pill or a diaphragm, is needed. In general, young women with epilepsy have the same options for birth control as other women. However, some anti-epileptic drugs may interact with hormonal birth control, such as the birth control pill, and make it less effective.

Pregnancies in teenaged girls are always considered high risk. This means there is a greater chance of things going wrong for both the mother and her baby. But being a pregnant teenager with epilepsy adds even greater risk. There may be specific dangers to babies who are exposed to anti-epileptic medication when they are in their mother’s womb. If your adolescent becomes pregnant, notify her epilepsy care team immediately. Also ask her family doctor or paediatrician to refer her for an appointment (as soon as possible) with an obstetrician who deals with high risk pregnancies. These specialists can advise you on medications and other epilepsy issues related to the pregnancy.

Teens with epilepsy should be given information about sexuality, contraception, and pregnancy well before they need it. These discussions should take place with members of the epilepsy care team and should be confidential. Your teen may wish to speak to the epilepsy care team alone. When the time comes to plan a family, she should be reassured that the health care team will be there to help her and her baby receive the best possible start.

Medical alert identification

Teens wear medical alert identification for all sorts of reasons: for example, because they wear contact lenses, have allergies to foods, medications, or bee stings, or have asthma or diabetes. The bracelet or neck chain gives emergency medical personnel information that could save a person's life. Ask your epilepsy nurse to show you samples of the kinds of identification available. You can also look at your options on the Medic Alert website.

Driving

If your child with epilepsy is thinking of driving, it is necessary to ensure his safety as well as that of others on the road. Consult the epilepsy care team first. They are good judges of your child’s condition and should be able to say if your child can drive, both safely and legally.

College or university

Leaving home to go to college or university is a time of upheaval for all families, but it may be especially stressful for a teenager with epilepsy and his family.

Coping with your child’s greater independence

Many parents of children with epilepsy find that, since they have spent so much time overseeing their child's care, it's difficult to "let go" and encourage and watch their children assume responsibility for their own care. However, it is important that teens take control of their own lives to ensure that they look after their health. Local community support groups that will allow you to discuss these issues with other parents can be helpful.

How does your child cope with greater independence?

Some children eagerly embrace their growing independence and responsibility for their own care. Others are fearful and may rely heavily on their parents. It’s important to find a middle ground; parents can continue to provide some support while they encourage their children to take gradual steps on their own.

Irene Elliott, RN, MHSc, ACNP

Janice Mulligan, MSW, RSW

2/4/2010


Notes: