“For the families who have a retarded child with epilepsy, or with cerebral palsy and epilepsy, or a child with some other combination of multiple handicaps, then you may have to define success and failure differently. We often are faced with families with a severely-damaged child who also has seizures. They come to us before they really recognize how damaged the child is and how limited that child will be. The parents will focus on the seizures and the medication and overlook the other underlying problems.”Parents like this will need a lot of support over a long period of time. You can’t just tell them right off, ‘Hey, your child is never going to walk or talk or do anything.’ It is important to give them hope. Everyone needs to maintain some hope. But you have to help them to become realistic, gradually to come to terms with the child’s problems and to accept them. Realistic acceptance, coupled with hope, is the goal I set for these parents.”You have to help them to see and appreciate the small successes every child achieves. These little successes—smiling, responding, turning over, making a sound—may be minimal achievements to you, but they are major achievements to the parent who has waited for them so long. Parents’ reactions to severely-handicapped children like these often will depend on ethnic background and on the social context in which they were raised. There is also a lot of individual variation. It is amazing the reserves of strength that reside deep in many people.”I don’t know how I would respond if I were thrust into the situation that faces many of these parents. And I don’t think anyone knows how he will respond until he actually has to face it. But, somehow, virtually all of them do respond in a positive fashion. Somehow, virtually all of them learn to cope.”What they require most of all is support. They need to realize that they aren’t the only ones who have faced a tragedy. They need support from husband or wife, from grandparents, and from friends. The counselor can be a major source of that support but must also help in finding other community and family sources. I try to make sure that the grandparents are educated about the epilepsy and about the child’s other problems; if grandparents do not understand, they can be very destructive instead of supportive of the family.*232\308\8*

Although pregnancy might affect your seizures, your risks during pregnancy are little different from the risks other women face. If you have questions about conditions that might have caused your epilepsy or about the effect of pregnancy on other health problems, you should check with your physician before you decide to become pregnant.
Your seizures may change during pregnancy. Therefore, your obstetrician needs to know about your epilepsy and your neurologist about your pregnancy. In about one-third of pregnant women, seizures get worse, in one-third they improve, and in one-third they are unchanged. Since we cannot predict which group you will fall into, your pregnancy should be monitored carefully. Ideally you should be on the lowest amount of a drug, and on a single drug only, to control your seizures. This drug, and its level, should, if possible, be determined before you become pregnant. Anticonvulsants should not be changed during your pregnancy unless such a change is needed for seizure control or because of toxicity.
Since blood levels change as your body chemistry itself changes during the pregnancy, blood levels of your medications should be monitored. We generally recommend that these levels should be measured early in the pregnancy, then followed every month in the middle third of your pregnancy and every several weeks in the last trimester.
There are three principal reasons why seizures increase during pregnancy in almost one of three women with epilepsy. The first is that pregnant women are naturally fearful that taking drugs may affect the fetus and, therefore, may fail to take anticonvulsant medication according to schedule. A second reason is lack of sleep during pregnancy. A third cause of seizures during pregnancy is changes in the body’s metabolism of drugs. Although such changes can cause blood levels to rise and thus cause toxicity, blood levels can also decline, leading to seizures. Your physician should closely follow your blood levels and provide appropriate adjustments.
Although there is little evidence that brief seizures injure the fetus, a prolonged seizure might affect your fetus and any seizures might cause injury to you. Therefore, we strongly urge that pregnant women with epilepsy who need medication for seizure control continue to take the drug that has been controlling their seizures.
*266\208\8*

Individuals who have epilepsy controlled with medication and whose physicians are now recommending discontinuing medication pose special dilemmas for both the physician and the driver. Optimally, we would like to help patients be free of medication if possible. While in an ideal patient the risk of recurrent seizures is small, if they recur it is most likely to happen in the first three to six months after stopping medication. Most physicians recommend that the patient should not drive during that period of increased risk. If driving is absolutely essential, then risks should be minimized by limiting the amount of time behind the wheel. Driving while tired or for long distances should be avoided during this period.
Clearly there is need for better information on the risks of driving with epilepsy. Such information should assess the risks of recurrence of seizures and factors which are predictive of such a recurrence, as well as the risks and hazards of accidents and of injuries to others. These risks should be placed in the perspective of other health-related disabilities. The driving risks represented by persons who use drugs and alcohol far outweigh the risks associated with epilepsy. These factors should be considered by the regulating agency when deciding whose driving should be restricted and for how long. The availability of restricted licenses that might permit an individual to drive to work or to school or only under certain restricted circumstances might balance the public’s risk of allowing some people with epilepsy to drive against the high cost of restricting the privilege.
Above all, decisions about driving need to be based on individual needs and capacities.
*263\208\8*