Management of Seizures/Epilepsy

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1 Seizures and Epilepsy Witnessing a child or adult having a seizure is frightening to families and bystanders. When most people think of the term seizure, they think of someone shaking on the ground or floor, with teeth clenched and eyes rolled back, being incontinent and having decreased breathing for many minutes. Although this can and does happen, there are many other types of seizures that are not as severe and may even be unrecognized by the average person. Seizures are very common in children; up to 4 percent will have had at least one seizure by the time they enter kindergarten. Most of these seizures are brief convulsions associated with fever (febrile seizures). However, some can be prolonged and require medical intervention to stop. Luckily, most children who have epilepsy stop having seizures when they get older. Not all children who have had a seizure need to be treated with daily medication. The term epilepsy is defined as recurrent, unprovoked seizures (any and all types). We exclude seizures triggered by fever, infections, minor head trauma, low blood sugar, etc. Some children and adults who have provoked seizures may develop seizures which occur without specific provocation. If and when that happens, the term epilepsy is appropriate. Neuroscientists have recently learned that many specific pediatric epilepsy syndromes span the entire age spectrum and have unique diagnostic, treatment and prognostic features. It is beyond the scope of this discussion to describe these in detail. However, information is available on the Internet (as many of you know!). Some helpful Websites include: Management of Seizures/Epilepsy The first step is to make sure the child is having seizures caused by electrical storms in the brain. Other causes of what appear to be typical seizures include breath-holding spells in infants and young children, syncope (fainting), cardiac arrthymias and some sleep disorders. It is crucial to make a correct diagnosis so patients are not subjected to unnecessary tests and treatments. Sometimes reactions to stress may be manifested in episodes which look identical to true epileptic seizures, a condition known as nonepileptic seizures (also called pseudoseizures). These can be difficult to diagnose and may in fact coexist with epileptic seizures. It is important to differentiate these since treatment of nonepileptic seizures with standard epilepsy medications will not be effective. Taking a careful history, performing a neurological examination and obtaining an EEG (brain wave test) are the first steps in establishing a proper diagnosis. Neuroimaging of the brain (MRI, CT) is often useful to look for structural abnormalities or lesions. In selected children, testing for enzyme deficiencies and other metabolic disorders may be needed. If the patient has had recurrent, unprovoked

2 seizures, the diagnosis of epilepsy is appropriate. If medication is deemed necessary, the most appropriate for the child s seizure type and/or epilepsy syndrome is selected. Typically, we start at the lowest possible dose of the drug, hoping to achieve seizure control with the least number of side effects. If the initial medication is not successful or has intolerable side effects, a second drug is chosen and the child is slowly tapered off the first. This process may continue when the selected medications do not control the seizures and/or cause too many side effects. If two or three of the appropriate single drugs fail to control the seizures, a combination may be tried. If this is not successful, the child is diagnosed as having refractory epilepsy. In this case medical evidence strongly suggests additional trials of standard antiepileptic medications will not work. Consideration of epilepsy surgery, the ketogenic diet or placement of a vagal nerve stimulator may then be necessary. (This topic is discussed in greater detail in a separate publication.) Frequently Asked Questions (FAQ) What is a seizure? A seizure is an excessive electrical discharge of neurons, or brain cells. This is often referred to as a lightning storm of the brain. The visible, outward clinical manifestations of the seizure depend on the location within the brain in which the abnormal discharge begins, and the brain pathways it follows. Most seizures are brief and spontaneously stop without intervention. Do seizures cause brain damage? It is rare that an individual seizure will cause permanent injury or damage to the brain; however, if the seizure is prolonged and lasts more than five minutes, medical intervention may be necessary. We now have medications that can be administered at home or school to stop a prolonged seizure. What causes seizures? There are many reasons why a child might have a seizure. The most common is fever in a young child. Head trauma also can cause seizures. Inherited seizure disorders are more commonly being recognized. In at least 50 percent of pediatric cases, no specific reason is found for the seizures. We think the rapidly developing brains of children make them more vulnerable to seizures. That is why most, but not all children with seizures stop having them during adolescence. How can I help someone who is having a seizure? There have been several brochures developed to assist in describing first aid for seizures. They can be obtained from Dayton Children s department of neurology or the Epilepsy Foundation (

3 What is epilepsy? Although epilepsy is a term that still has negative implications in society, epilepsy is defined as recurrent, unprovoked seizures. Epilepsy does not include seizures triggered by acute events such as fever, low blood sugar, infection, etc. Whether the seizures have tonic-clonic (grand mal), absence (petit mal) or other clinical manifestations are not factors in the diagnosis of epilepsy. In most instances the terms seizure disorder and epilepsy are synonymous. Do all seizures need to be treated? The answer to this is an emphatic NO! Some pediatric seizure disorders are benign and self-limited, some are very serious and dangerous and many are in-between. All children with seizures or epilepsy need a careful evaluation by a pediatric neurologist experienced in the care of children. EEG, MRI and other laboratory studies may help in defining the epilepsy syndrome and assessing the risks and benefits of medication. Are there alternatives to medications for the treatment of epilepsy? If a decision to treat the seizures is made, daily medication will be needed. It is only the rare patient who has an epilepsy syndrome that can be managed by vitamins. Typical dietary restrictions and additions are not effective in preventing seizures. A special diet, called the ketogenic diet, may reduce the number of seizures in a small, selected population of epileptic children who have refractory, severe seizures. In some children who have been tried on multiple medications, a vagal nerve stimulator may be considered. We have used this device in many children. Finally, if a surgically resectable lesion is found to be the cause of seizures, removal of this part of the brain may be considered. This requires an extensive functional evaluation of the child s motor and language functions. Is it true that all medications have dangerous side effects? The term side effect is often a misnomer. All medications have multiple effects on different parts of the body. Of course, the one we are interested in is controlling seizures. All others are described as side effects, but the drug doesn t know our wishes or reasons for taking it. A negative side effect such as weight gain to a heavy person can be a positive side effect to one who is too thin. There are many serious and potentially life-threatening side effects of medications used to treat epilepsy; fortunately, these are not common. Some can be anticipated and treated by appropriate laboratory monitoring. Most are minor and predictable; they typically occur at higher doses and relatively soon after being started. The ones you may read about online or in the PDR may be serious but infrequent. The FDA requires manufacturers list all potential adverse effects of their medications, even if rare. Your doctor can help you put these in perspective, help gauge the possible risks and benefits. Our goal is always to use the fewest number of medications at the lowest doses possible to control seizures. This helps limit unwanted side effects.

4 Never abruptly stop taking or giving anti-seizure medicines. This could trigger prolonged seizures (status epilepticus) in some children that could be life-threatening. If your child is having problems with medications, please call the department of neurology. How do you select which medication to use? The initial choice of a medication is typically based upon the child s age, type of seizures or specific epilepsy syndrome being treated, EEG pattern and any other comorbid conditions which may be present. This is a very important point. Many children who have epilepsy have other problems in addition to seizures. Some have learning and/or attention problems which can interfere with school performance. There is a higher incidence of migraine and other headaches in children who have seizures. A significant percentage of epileptic teenagers are depressed. Behavioral problems are more common in epileptic children. These conditions are referred to as comorbid and may be more disabling to the child than seizures. Different anticonvulsant drugs may also have properties which can help or worsen these conditions. Therefore, selection of an initial or additional medication is a complicated procedure, taking into account all aspects of the child s life, not just the seizures. Physicians must remember that we are dealing with children who have seizures, not an epileptic who happens to be a child! What if medications don t completely stop the seizures? Some epilepsies cannot be controlled even by combining the older and newer medications. It has been shown that after using three medications in an attempt to control seizures, additional medications are unlikely to work. In these cases, the ketogenic diet, surgical implantation of a vagal nerve stimulator or more radical epilepsy surgery may be indicated. For some children, control of their seizures is possible only with multiple drugs which have intolerable effects. The primary goal of epilepsy management is optimizing functionality, not only eliminating seizures. In children who have severe brain injuries and refractory seizures, permitting them to have occasional, brief and relatively minor seizures may be preferable to achieving total seizure control by making them medication zombies. Many children have been treated whose seizures are no better on multiple drugs than on no daily medications. For them, using a rescue medication such as Diastat rectal gel for prolonged seizures may be a preferable treatment option. However, never stop taking or giving medications cold turkey, as this could potentially trigger severe, life-threatening seizures. Should other medications be avoided if my child is taking seizure medication? Medications used to treat and prevent fever, such as ibuprofen (Motrin, Advil) and acetaminophen (Tylenol) are safe to use with anti-seizure drugs. In rare cases, antihistamines may provoke seizures or cause more seizures. Therefore, we recommend avoiding use of antihistamines to treat colds and coughs, routine seasonal allergies. Decongestants are generally safe. Certain antibiotics can dramatically raise the blood concentration of certain anticonvulsant medicines to toxic levels. Make sure the doctor who is prescribing antibiotics for your child knows which other medications he/she is taking (always a good idea). Some anti-seizure medicines may make birth control pills less effective.

5 Why is my child having more behavioral problems? There are many possible reasons for this common problem. The medications being used may have behavioral effects. This is more likely with some drugs than others, especially the older ones like phenobarbital. Even the newer medications may have behavioral side effects, but they can often be positive. In more handicapped children, sometimes treating the seizures can unmask underlying behavioral issues that were kept hidden because of frequent seizures. We know that the injured brain does three things: 1) develops seizures 2) has developmental and learning consequences and 3) manifests behavioral problems. It is often frustrating for families and physicians to obtain better seizure control at the expense of worsening of behavior. The behavioral issues may need to be separately addressed with counseling, therapy, and if necessary, additional medications. The behavioral issues may have nothing to do with seizures or medications. There may be changes in the home and/or school environment which are triggering emotional responses. Especially during and beyond puberty, we see the consequences of earlier lack of discipline by the family to typical childhood tantrums and limit-testing. Parents often feel they cannot discipline a child who has medical problems, who may not be treated as normal by others. Although this is understandable, it can have disastrous consequences later on. We counsel that if a child is mentally capable, treating him or her like other children is in the child and family s best interests in the long run. Will my child have to take anti-seizure medication forever? On average, three times more children than adults have epilepsy. This means that most children stop having seizures and can stop taking medication for them when OK d by the neurologist. Whether and when a child who has a specific epilepsy syndrome will outgrow his/her seizures depends on many factors. Some of these include the age when seizures started, the reasons for the seizures, if discoverable, how many seizures the child had and how many drugs were needed before they were stopped, and whether neurodiagnostic studies (EEG, MRI) were abnormal. Only a few of the pediatric epilepsies, such as juvenile myoclonic epilepsy (JME), will require medication for life. Our physicians and staff will address this issue with you and your child. What are the chances that my other children will have seizures? This will depend on the etiology (cause) of your child s epilepsy. Specific diseases or disorders which cause seizures may have their own particular genetic pattern of inheritance. Many of the epilepsy syndromes themselves have genetic risks, some are sporadic. Every day, scientists are finding more epileptic conditions, chromosomes and genes being identified. There is a slightly increased risk of birth defects in children of epileptic mothers. Some medications used to treat seizures may increase these risks and should be avoided if possible. We strongly support the recommendation that ALL females who are biologically capable of having babies should take daily supplements of folic acid.