The passage from childhood to adulthood is surrounded by issues of rebellion, indepen dence, heightened self-consciousness, experimentation, dating, driving, and concerns for the future. Adolescents and their parents share the highs and lows of this often stormy period, and communication between them is essential to temper its turbulence. This is a challenge for both parents and adolescents as intense emotions and feelings create conflicts; parents are heroes and villains, best friends and “police officers,” and sources of great affection and frustration.
The adolescents’ tidal waves of emotions can consume them and those around them. Emotions are infectious. Parents must maintain their perspective and remain sensitive to their child’s insecurities, peer pressures, and need for support. The parents must communicate with their children about drugs, smoking, drinking, and sexually transmitted diseases. The key to communication is allowing children to be comfortable opening up. Becoming judgmental too quickly can damage trust and openness. Parents need to educate their children and share their feelings, but in a positive manner. If adolescents engage in dangerous or irresponsible activities, parents may need to “read them the riot act,” but they should try to pause first before reacting in their own emotional storm. Adolescents often know when they have done something wrong and are embarrassed and frustrated by their actions.
Adolescence does not need any complicating factors, but epilepsy is just that. In a time of life marked by continuous adjustments to dramatic physical, mental, social, and academic changes, epilepsy can upset the tenuous balance. Epilepsy, even if it is well controlled, can torment adolescents, arousing fears of or actual isolation and stigma fed by their heightened self-consciousness and exaggerated concerns over physical and social image. Restrictions on activities can accentuate differences from others. For children entering adolescence with good self-esteem and a sense of independence, the impact of epilepsy can be minimal. But epilepsy can aggravate or create problems of low self-esteem, dependency, or behavioral difficulties.
Puberty marks the sexual transition from childhood to adolescence. The sex hormones initiate physical and mental changes. The age at which puberty begins varies considerably; children who have early or late changes are often concerned, and sometimes teased, about the differences in their bodies and their schoolmates.
The sex hormones affect the body and the brain, altering electrical and chemical activity, personality, mood, and, in some cases, seizure activity. Hormone release is both continuous and episodic; there are periods when large amounts are released over short periods, causing relatively rapid changes in mood and physical features.
Seizures may begin or stop or change around puberty. This relationship may be coincidental, but hormonal changes are likely involved in some cases. Hormones such as estrogen may increase the likelihood of seizures, and many women report that seizures most often occur around their menstrual and ovulatory periods. Rapid changes in growth during puberty can alter antiepileptic drug blood levels. If seizure control worsens, the possibility of a decrease in antiepileptic drug levels should be considered.
Maturity should make adolescents more aware of the benefits of taking antiepileptic drugs. For some, however, rebellion or denial dominates, making them less compliant. Adolescents can usually understand the consequences of taking or not taking their medications. Education about antiepileptic drugs can come from both the parents and the doctor, but the adolescent should be enlisted as an active partner in his or her treatment. Teenagers with epilepsy should take greater responsibility for their care. It may help for the adolescent and doctor to be alone for part of each visit, fostering independence, a sense of self-control, and trust with the doctor and the parents.
With older children and adolescents, the easiest and the best assessment of compliance is simply to ask them straight out: “Are you taking your medication?” Measuring the antiepileptic drug blood levels at intervals can tell the doctor and the parents if the medications were taken as prescribed and can reinforce compliance. However, problems with drug absorption or metabolism, or a period of rapid growth in height and weight, can cause lower levels.
Driving a motor vehicle is an act of independence. The “driving birthday” is very special. Many people with epilepsy can drive, but there are safety concerns and legal issues that limit driving for many people with epilepsy. In most states, a person with epilepsy must submit a letter or form from the doctor about his or her seizure disorder. Many states ask the doctor about their recommendation, which is influenced by compliance with medications: remind adolescents that a favorable report depends on their taking the medications as prescribed.
As the age for driving approaches, review the adolescent’s medical care. If no seizures have occurred for several years, it may be wise to attempt to lower and eventually stop medications at least 6 months or a year before the driving age. If the adolescent’s seizures are poorly controlled, however, approaching the legal age for driving may prompt referral to an epilepsy center for reevaluation and possible changes in therapy. Adolescents with uncontrolled seizures that affect consciousness or motor control cannot obtain a driver’s license.
Dating does not come naturally to most people. Adolescents are often uncomfortable or uneasy when they start to date, and epilepsy is often a complicating factor. Although epilepsy should be discussed with anyone who is being dated regularly, it is reasonable to wait until the relationship feels comfortable. The person should not be tested. For example, don’t make up “people you know with epilepsy” to see how the other person reacts. If the discussion is open and honest, friends will be more willing to ask questions and share their feelings. If the adolescent’s seizures are not well controlled, however, discuss epilepsy sooner rather than later, and preferably in person.
Every person who has asked someone for a date has known the fear of possible rejection. Someone with epilepsy has the added fear that he or she will be rejected because of the epilepsy. This fear is not completely unfounded. Some people who hear the word epilepsy become frightened, a fear based on lack of knowledge. But they can be educated. Their understanding of epilepsy and feelings about it will reflect those of the person who lives with it: if the person with epilepsy is comfortable in discussing it, those around them will usually be supportive and comfortable.
Rejection is part of the dating game. No one is spared. People are rejected for many reasons. Although epilepsy is one of many possible reasons that someone may reject someone else, often it is not the reason.
As one grows closer in a relationship, there is a natural tendency to have intimate contact. There is no reason to fear having a seizure during kissing or other intimate contact any more than at other times, but intimate contact does not protect someone from a seizure. The more frequent the seizures, the more likely a seizure may occur during intimate contact, so the partner should know what to do if a seizure occurs.
Although the vast majority of people with epilepsy are able to enjoy sexual feelings and activities, some have less interest in sexual activity than their peers. The libido, or interest in sexual activity, may be affected by some antiepileptic drugs, especially those that activate liver enzymes (for example, carbamazepine, phenytoin, phenobarbital), or possibly by the epilepsy itself. The person with epilepsy is often not aware of a problem. Instead, it maybe noticed by a parent or significant other. If it does become an issue, it may be helpful to discuss it with a doctor since changing medications or reducing the dosage maybe helpful.
Use of Alcohol and Illegal Drugs
When adolescents use alcohol or illegal drugs, trouble is not far behind. Their immaturity, impulsivity, and willingness to take chances often put adolescents who use alcohol or other drugs in particularly dangerous situation, such as driving or sex. Few adolescents fully understand the potential dangers of drugs. Alcohol is the leading cause of motor vehicle accidents in the United States, and teenage drivers in fatal accidents are more likely to have used alcohol than other age groups. Cocaine can cause strokes, heart attacks, seizures, or death.
The rules concerning alcohol use and epilepsy apply to both adolescents and adults, but greater caution applies to the younger group. One or two alcoholic beverages usually cause no meaningful changes in antiepileptic drug levels or in seizure control. The problem is that one or two drinks become three or four, intoxication clouds judgment, and serious problems can follow. Teenagers often will sleep off a hangover, and those with epilepsy may fail to take their bedtime and morning medications. Adolescents with epilepsy should know that alcohol use can worsen seizure control. In addition, the combination of antiepileptic drugs and alcohol can be very sedating. Teenagers with epilepsy should not drink alcohol, smoke marijuana, or take other drugs.
Cocaine can cause seizures in someone who has never had one before and worsen seizure control in someone with epilepsy. Seizures associated with cocaine use are much more dangerous than seizures that occur from other causes or spontaneously, and they can be fatal. Seizures can be caused or made worse by the use of stimulants (amphetamines), heroin or other opiates, LSD (“acid”), PCP (“angel dust”), “ecstasy,” or the withdrawal of sedative-anxiety drugs such as benzodiazepines and barbiturates. These drugs are illegal and very dangerous for adolescents with epilepsy.
Thinking About a Career
Although most adolescents don’t choose their future career in high school, some thought to their future is often helpful. Certain classes in high school or college can advance knowledge and skills related to an area of interest. Guidance counselors and vocational counselors often are available in high school to discuss career plans.
Persons with well-controlled or infrequent seizures should have few or no limitations on possible careers, but those with uncontrolled seizures may face some limitations. Adolescents with epilepsy and developmental disabilities such as mental retardation, cerebral palsy, or blindness now have greater work opportunities. Realistic but progressive and positive expectations are critical.
Part-time work can be rewarding for adolescents who have epilepsy. In addition to their paycheck, work can provide discipline, skills, education, and a sense of accomplishment and success. A part-time job is often an important step toward independence. The job should be balanced in the child’s academic and social life; sleep deprivation or the stress of overwork can increase seizure frequency.