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Telling Others Who Need to Know

The following article first appeared on Epilepsy.com and is reprinted here with permission from Epilepsy.com.

Anyone who is teaching, caring for, or closely associated with a child with epilepsy should know about the child's disorder. Epilepsy, a disorder characterized by transient but recurrent disturbances of brain function that may or may not be associated with impairment or loss of consciousness and abnormal movements or behavior. If someone responsible for a child's health or safety doesn't know that the child has epilepsy, the door is opened for potential problems. In some cultures, parents may be especially reluctant to discuss their child's epilepsy. These are often the same cultures in which there are strong concerns about epilepsy and marriage. For example, some communities have strong reservations about disclosing the presence of epilepsy in a family member. This attitude is mostly based on realistic concerns regarding the stigma and discrimination still associated with epilepsy in some groups, embarrassment for the family and the family name, and future concerns about the child's ability to find a spouse. However, a child's health should take precedence over other concerns. For this reason-as well as to help break down the cultural walls of the stigma-all people caring for a child with epilepsy should be informed about the disorder.

Relatives

Relatives can be the most supportive and helpful people in the world or the most difficult. As a general rule, relatives should be told about a child's epilepsy. Who and how much to tell should depend on whether or not the relatives are likely to be alone with the child, and how they may react. Practically speaking, however, if one relative has been told, they have all been told! A potential problem with relatives is that they love to give advice. Advice is often helpful, but the primary caregivers (usually the parents) must do what they feel is best for the child. Just as it is important that one doctor manage a child's care, it is important that parents assume primary responsibility for their child's disorder. As the child gets older, he or she should begin to assume some of this responsibility.

School nurses, teachers, and classmates

School is a major part of the child's day. If the child has daytime seizures, school nurses and teachers should be told about the child's epilepsy. The school nurse is an important part of the child's health care team and serves as the advocate for the child in the school and a resource for teachers who need information about epilepsy. The school nurse is most likely to be called on if the child has a seizure. A seizure is a sudden, excessive discharge of nervous-system electrical activity that usually causes a change in behavior or experiences adverse effects Adverse side effects; negative effect from medication or therapy. The nurse should be informed about the nature of the child's seizures and the medications being used, and should be kept up-to-date on any changes. The nurse should also have the parent's and doctor's telephone numbers. In some cases, the school nurse may confer with the gym teacher or sports coach to discuss possible precautions during some activities. Children's Hospital of Orange County Epilepsy Center offers a School Nurse Guide which provides introductory information about epilepsy:

The teacher should always know the type of seizures the child has and what they look like. Teachers who are not familiar with epilepsy or with the child's seizure type can be given a book or a pamphlet from the Epilepsy Foundation. They also can look on a website like epilepsy.com, which will inform them about how to recognize seizures and adverse effects of medications, and will teach the principles of first aid for seizures.

The teacher should be asked to observe the child carefully for possible seizures or adverse effects of medication. If the teacher notices any unusual behavior, such as staring, lip smacking, repetitive hand movements, or involuntary movements, the parents and the doctor should be told. These behaviors may represent seizures. Further, certain problems such as tremor, lethargy, nausea, or double vision may occur only when the medication levels reach a peak during school hours. In this case, the teacher's observations will be critical in adjusting the dosage to relieve these symptoms. Thus, the teacher is an extension of the parents' and doctor's eyes and ears.

On the other hand, the teacher must balance the careful observation of the child with the need to treat him or her just the same as the other children. The teacher is a powerful role model for children's attitudes toward epilepsy. How the teacher responds to the occurrence of a seizure in the classroom can have a strong influence on how it is perceived by the other children. A calm and matter-of-fact manner and openness to questions can do much to lessen fears and encourage acceptance in classmates.

If daytime seizures are frequent, it is important to discuss the disorder with the rest of the children in the class. A period of time can be set aside to discuss epilepsy and the child's seizures. By discussing it openly, all of the children can be educated and a sense of community is fostered. A staff member from the local Epilepsy Foundation affiliate or an epilepsy center may be asked to conduct an educational program for the child's classmates or the whole school. These open forums can be helpful in shifting the other children's perspective from fear and teasing to respect and friendship.

The child's friends and their parents

More than anything else, Pete just wants to be one of the kids. He has overcome a learning disability and is now in mainstream classes and doing well. He has a few good friends and loves intramural basketball. Although his seizures are now well controlled, he doesn't want anyone at school to know about his epilepsy. We have tried to convince him to tell his close friends, but he refuses.

Children with epilepsy should be encouraged to pursue friendships and social activities. Healthy socialization with other children is essential for self-esteem and future success. The decision to tell a child's friends about epilepsy is often difficult. Children are immature and can be insensitive. In addition, if the friends' parents are uninformed about epilepsy, they may unnecessarily fear for their children's safety or be afraid that they will suffer "psychological trauma" or an injury or wound caused by external force or violence if they witness a seizure.

The child's friends and their parents should be carefully told about the child's epilepsy; it should not just be casually mentioned. It may be a good idea for the young person to discuss the epilepsy with his or her close friends and for the parent to discuss the disorder one-on-one with the friends' parents. The discussion should explain the type of seizures, their frequency, how the seizures affect the child, and what to do in case a seizure occurs. Most important, they need to know that epilepsy is just another episodic medical problem, like asthma, which affects otherwise healthy, active children, and it is not something that a person can "catch." The other children and their parents also should be given a chance to ask questions.

The need to conform and to belong to a group makes many adolescents (starting at around age 12) want to hide their epilepsy. Therefore, whether to tell their friends about epilepsy can be a difficult decision. The adolescent must always be involved in the decision to reveal his or her disorder-whom to tell, how to tell, and how much to tell. Older children, perhaps as young as 8 or 9, should also be involved in decisions about who is told and what is said. Because the maturity of teens and preteens varies, some friends may be frightened by the disorder, whereas others may react with teasing and try to isolate the young person with epilepsy. For adolescents whose seizures are not fully controlled, it is especially important that their friends know about the epilepsy and what to do in case a seizure occurs, but the decision to confide still should be the adolescent's, not the parents'. For adolescents with well-controlled seizures who have few or no adverse effects from medications, it is less important to tell other people about epilepsy.

Although such negative reactions are becoming less frequent, ridicule remains a part of life for many children with epilepsy, especially in the lower grades. When a child makes fun of another child with epilepsy, the most effective strategy is to pay little heed. It may be worthwhile to respond calmly that epilepsy is a medical disorder, or to ask if they would make fun of their own mother or grandfather who had a heart condition, or an athlete who broke a bone. Most children are actually understanding and supportive.

Babysitters

Babysitters allow parents to have some independence from their children. Babysitters who are educated about the disorder can care for children with epilepsy. Although parents are right in thinking that no one will watch and care for their children the way they do, mature and responsible babysitters can do a very good job. It is also important for children's maturation for them to learn that their parents cannot be there every minute. This will pave the way toward successful separation from the parents when it comes time to go to school and camp.

Babysitters should be told that a child has epilepsy before they agree to watch the child. Because babysitters are left alone with the child, they should be knowledgeable about the epilepsy and basic first-aid measures. They should be reassured that dangerous situations and emergencies are extremely uncommon, but they must be prepared. They should know the type and frequency of seizures, medication dosage, where the medication is stored, and the telephone numbers of those to call in an emergency, including the doctor's number. For children with seizures associated with incontinence, keeping a change of clothing on hand for the child (and the babysitter) can be helpful.

The Epilepsy Foundation has an educational pamphlet for babysitters. It gives basic information about children with epilepsy and describes first aid.

The dentist and orthodontist

Although children with epilepsy rarely require special attention during dental procedures, dentists should be made aware of the child's seizure disorder. The dentist may want to speak briefly with the doctor about the child's condition. For children who have frequent tonic-clonic, myoclonic, or atonic seizures, a low dose of a benzodiazepine, such as lorazepam, may be helpful before dental procedures. Children with epilepsy who are taking medications that affect gum growth should receive regular dental care and should be taught to brush with care and, when old enough, to use dental floss.

Children with severe epilepsy, cerebral palsy, Cerebral palsy; a condition with various combinations of impaired muscle tone and strength, coordination, and intelligence. Or associated neurological disorders may require general anesthesia for major dental work. Before such procedures, it may be helpful for the dentist and doctor to discuss the medications and precautions. Finally, the orthodontist using braces or other equipment should know that the child has epilepsy because special precautions or procedures may be needed when braces are fitted.

Topic Editor:Steven C. Schachter, M.D.

Last Reviewed:12/15/06

 
IMPORTANT SAFETY INFORMATION

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In clinical trials with DIASTAT®, the most frequent side effect was somnolence (23%). Less frequent adverse events reported were dizziness, headache, pain, vasodilation, diarrhea, ataxia, euphoria, incoordination, asthma, rash, abdominal pain, nervousness and rhinitis (1%-5%). Please see full DIASTAT AcuDial Prescribing Information.