Coping with anxiety is a crucial step in acceptance of your child and her problem. You may have sensed the teacher’s anxiety when you first told her about your child’s seizures, or perhaps you simply worried how she might react. Maybe her anxiety is a consequence of lack of information. Perhaps she has been exposed to the myths. Perhaps she once had a child in her classroom who fell and hit his head during a seizure. You may be able to reassure the teacher by saying, “I know that you’re worried that Steve will fall and be injured and that I’ll be furious and accuse you of not looking out for him. But I won’t. We’ll both be upset that it happened. But we both have to realize that Steve needs to be in school with his classmates. His seizures are really infrequent, and he usually has a little warning. We need to convince him to let you know that warning has come so that he can be in a safe place. We have to let him take some chances if he’s to have the opportunity to be a normal child.”
This kind of dialogue is critical to an understanding and working relationship between parent, child, and teacher. Teachers often need help in coming to terms with their anxiety, just as you do. Acceptance of the realities and accurate information can do a lot to relieve anxiety for everyone. When you have come to believe what you just said, you have come a long way in accepting your child and his epilepsy.
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“When are you going to start Frank on medication? What are its side effects?”
“Now that Sarah has had a seizure, how long before I can allow her to ride her bike again?”
“Billy was going to go on a trip out west this summer. Should I put down the deposit? Will he be able to go?”
Life is full of risks and benefits. We take risks for ourselves and for our children every day. Although no one would ever do it, the safest place to raise a child is in a padded cell. In that cell the child cannot be injured when he falls down, tumbles from a tree, or crosses in front of a car. Your child will be safe! But you will be sorry. Clearly, a child raised without risk would be a very abnormal child. Living, therefore, is best seen as a series of assessments of the relative importance of risks and benefits. Making decisions about which risks (costs) to take for which benefits is what we all do subconsciously all the time.
Risk-benefit analysis involves weighing the good against the bad. On the good side of the scale, we calculate the chance of a benefit and worth of the benefit. A small chance of winning a large amount of money in the lottery may be “worth it” and outweigh the risk involved in losing a small amount of money. Worth has different meanings in different situations and to different people. Achieving “worth” or “winning” always involves some risks and consequences that must be weighed against the potential benefits.
Medicine is a series of risk-benefit analyses. In the past, physicians tended to do all of the analysis for you and recommended what you should do—whether your child should take medication and what medications he should take. This is much easier for the parent, and perhaps for the doctor as well since it doesn’t involve as much time and discussion. With the advent of a more medically sophisticated public, however, the patient and the family are, and should be, more closely involved in the decision-making process. The physician will still weigh the risks and the benefits and make recommendations on the basis of his assessment, but you as parent should weigh them as well. The risks of what he recommends are your risks (or your child’s), not his, and the benefits that accrue, accrue to you or your child. You may evaluate the worth of the benefits or the consequences of the risks differently from your physician.
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Some people ask us about the risks for their child if other family members have epilepsy. Some parents who do not have epilepsy themselves ask about risks for subsequent children when one of their children has had seizures. The answers to these questions require more detailed explanation.
Epilepsy may be a manifestation of some other disease. Some metabolic diseases, such as the aminoacidurias like phenylketonuria (PKU), and degenerative diseases, like Tay-Sachs and metachromatic leukodystrophy, may cause seizures. If one of your children has such a metabolic disease, the risk of a subsequent child’s having it is one in four. That other child is also likely to have seizures. If your brother or sister had the condition and you did not, you might carry the gene. If you do, and if you were unlucky enough to marry someone else who also had the same abnormal gene, then the chance of your child’s being affected could be as high as one in four. If you do not carry the abnormal gene, your chances of having an affected child are zero.
In a few diseases such as tuberous sclerosis or neurofibromatosis, the recurrence rate may be as high as one in two. If you, as the parent, had tuberous sclerosis, for example, half of your children could also have the disease and may have seizures.
If one of your children has idiopathic seizures, seizures for which the cause cannot be identified, the chances of other children also having seizures is twice as high as in the general population. Thus, they would have a 3 to 4 percent chance of having epilepsy. If one of your children has a febrile seizure, or a seizure after head trauma, the chances of brothers and sisters having similar seizures are also twice as high as the general population.
In summary, there is a genetic tendency to inheriting epilepsy, but the risk is small both for the child of a person who has epilepsy and for her brothers and sisters.
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One of the principal advances in our ability to control seizures came when we learned how to measure the amount (level) of an anticonvulsant in the blood. From knowledge of this level, we were able to assess the amount of the drug actually reaching the brain. And yet this advance is less than two decades old.
Even now many physicians do not fully understand the use of blood levels and the concept of the “therapeutic range” of a given drug. Parents (and physicians) often believe that these levels ensure control of the seizures or guarantee the absence of side effects, misbeliefs that often lead to misuse of the blood levels.
Blood levels are measured in the serum (liquid portion) of the blood, which may be taken by needle stick from a vein or by pricking the finger. The level is measured in many laboratories, most, but not all of which belong to a quality assurance program. (There are several different methods of measuring the drug level, but those techniques are not important here.) The test must be requested and interpreted by your physician.
The level of the drug in the blood will vary, to some extent, depending on how long after the previous dose the blood is drawn. Remember, we have talked about a drug’s half-life. The level of the drug in the blood will be highest one to two hours after a dose, when most of the drug has been absorbed. The level will be lowest just before the next dose. How much variation there will be between those two will depend on the half-life of the drug and the time between the doses. While some physicians prefer to measure the level at the “trough,” the low point, this measure is only important if the child is having seizures at that time. It may be just as important to measure the blood level at a time when the child is having seizures to see if the level is low, or to measure it when the child is sleepy, dizzy, or having other unexplained symptoms in order to ensure that the level is not too high.
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