Parents may become too attached to their child, which is often very unpredictable. Communication between family members may shut down since parents may withdraw emotionally to protect themselves from painful feelings. Parents should be aware of the potential complications, which may result from their feelings while trying to deal with their child’s condition. That way, parents can get help from support groups, counselling or other available resources.

When a child is diagnosed with epilepsy, parents may experience a number of consequences and the family may face many issues. Parents often find themselves dealing with feelings such as, “I’ve lost my perfect child,” and “My child will be different now.” Parents may feel very vulnerable and experience anger, guilt, shock, denial and grief before finally accepting their child’s disorder.

Family members also may report feelings of depression, helplessness, frustration, low self-esteem and high levels of stress. Family members may blame an individual in the family for causing the child’s epilepsy. Parents may blame themselves or their spouse. Siblings often blame themselves. These difficulties may continue as the disorder progresses.

The family environment is very important in the course of epilepsy and may influence both the severity and the impact of the condition. If family members’ attitudes towards epilepsy are negative, the child with epilepsy will be affected negatively, which in turn will negatively affect the family unit and its functioning. Negative attitudes toward epilepsy may result from the stigmas society attaches to epilepsy. These attitudes may include lowered expectations for the child with epilepsy, and the belief that the child must be protected.

Parents’ overcompensation in an effort to try to gain control over the unpredictability of the seizure disorder may lead to overprotectiveness. Studies show overprotectiveness or restrictive families are associated with poor adjustment and poor acceptance of epilepsy. Studies also show that children who perceive their parents are more over-controlling are more depressed and have more behavioural problems. Overprotectiveness can also impede the child’s emotional maturity and cause the child to become over-dependent on the family. The child may also lack social skills, act passively and be unable to make normal peer relationships.

When families are having difficulties coping with epilepsy, interventions are essential to improve the outcome for the entire family. Education helps to eliminate the stigmas associated with epilepsy and may help to improve family functioning. Information is an important component to help parents, the child and siblings come to terms with the diagnosis of epilepsy.

Many families, however, report that they receive little advice from health care professionals when their child is initially diagnosed with epilepsy. Parents feel forced to seek out most information for themselves. Without accurate, clear information, children may experience inappropriate adjustment or maladjustment because of the way they feel about their disorder or the way they are treated.

Studies show that when individuals know more about epilepsy, they respond more positively towards people with the disorder. Thus, educating people about epilepsy has a great beneficial impact on making their attitudes more positive towards people with the disorder.

The child with epilepsy may perceive the functioning of the family very differently from the way the rest of the family views it. If the child with epilepsy has additional difficulties, such as learning and/or physical disabilities, these in turn may put additional strain on the whole family.

Remember that children also have to deal with the demanding task of growing up, which has its own stresses and stains on the family. Any negative effects of epilepsy may become intertwined with the process of growing up and lead to further negativity as the child matures. Thus, the effects of epilepsy are far reaching and can have negative effects on everyone who is involved with the child who has epilepsy.

For more information on parents and siblings who have been touched by epilepsy, see Siblings and Epilepsy.

• Terror and confusion the first time they see their child have a seizure.
• Fear that their child will die during a seizure.
• Feelings of helplessness, fear or panic when their child experiences a seizure. Feeling that they have no control during the seizure may cause parents to scream, cry, freeze or yell for help from onlookers.
• Feelings that they didn’t handle the crisis adequately.
• Feelings of intense anxiety as to when seizures will occur and their future implications.
• A sense of loss of control as there are an increased number of medical appointments and changes in daily routines.

• Get information from your local epilepsy agency.
• Talk to other parents who have children with epilepsy.
• Get counselling for you, your child and/or the entire family.
• Find a support group for yourself and/or your child.
• Encourage your child to actively share information with his/her friends about epilepsy.
• Encourage your child to spend some time alone with the doctor, asking questions and discussing any concerns.
• Help your child to identify emotions – anxiety, sadness, anger, disappointment, uncertainty, fear, frustration, guild and worry – and to learn to deal with them appropriately.
• When planning family outings, create a back-up plan, should a seizure occur.

Consider the following:

• How can brothers and sisters help during and after a seizure?
• Can your child resume activity after a seizure?
  • If not, who will tend to the child after the seizure while other family members continue with their trip to the park, birthday party, picnic, or camping?
• Under what conditions would it be necessary to cancel or end an outing prematurely?

It is very important for parents to inform their child about his/her epilepsy. The child may have no knowledge of the seizures if s/he is not conscious during them. How much parents tell their child depends on how much they think their child can handle. Generally, the younger child is, the more satisfied s/he will be with a brief explanation of his/her seizures.

As the child grows, however, it is likely that s/he will want more information. Books, diagrams and information from your local epilepsy chapter can help explain epilepsy to the child and help answer any of his/her questions or concerns. Parents may also want their child to speak to his/her doctor or counsellor for further information.

Parents should discuss what epilepsy is, triggers (what causes a seizure), what happens during a seizure, how to manage epilepsy in terms of diet, lifestyle, medications and medical care, and how the child can tell others about his/her epilepsy. Parents should reassure their child that although some seizures look dramatic, the vast majority are painless for the person involved. Parents should also consider mentioning that it is extremely rare for anyone to die while having a seizure if they suspect their child has fears about death.

Children should also be encouraged to ask any questions and mention any concerns they have. The child should be encouraged to become more and more involved in managing his/her own epilepsy. This includes taking his/her own medication, researching epilepsy him/herself, becoming aware of his/her triggers, and building his/her own relationships with medical professionals.

Parenting a child with epilepsy is not so different from parenting any child. Children still need the same love, attention and encouragement from their parents to grow up. There is no specific “one way” of parenting a child with epilepsy; however, there are some extra factors to take into consideration.

Infants (newborn to 18 months)

Toddlers (18 months to three years)

Preschoolers (three to five years)

Latency Age (seven to 11 years)

Adolescence (12 to 18 years)

Remember that brothers and sisters play a significant role in the life of your child with epilepsy. Siblings who understand seizures and are not fearful of them can often be helpful by ensuring that other children do not overreact to a seizure and by calling a designated adult to assist the seizing child.

Include brothers and sisters in the care of your child with epilepsy. This can help them to feel useful and can also be a welcome support to you as parents. It is important to note that placing responsibility on the sibling to supervise a child with seizures is not recommended. This places the sibling in a parental role and is too much responsibility for a child. Brothers and sisters need to feel included in helping their brother/sister manage the disorder but should not feel responsible for managing it.

• Explain what epilepsy is and is not.
• Explain that the child with epilepsy will not die from seizures.
• Explain to the siblings that they did not cause their brother/sister to have epilepsy.
• Be aware that brothers and sisters may fear catching epilepsy. They can believe the myths and stereotypes held by schoolmates. They may have a difficult time coping with ridicule, teasing and ignorance. Parents’ understanding and response to their child’s seizures provide a model for siblings to follow.
• Take time to talk with your other children about epilepsy. When siblings have someone to talk to, this can increase their ability to cope and ease any frustration they feel about their sibling’s epilepsy.
• Be sure to spend time one-on-one with each child. Brothers and sisters are aware of the extra time that parents spend with their child with seizures and do feel left out.
• Give them information about how to explain seizures to their friends.
• Give your child with epilepsy responsibilities, duties and privileges as you do your other children in the family. Don’t give in to your child for fear s/he will have a seizure. Some children may threaten with a temper tantrum that parents often fear may lead to a seizure. Treat your child with epilepsy the same as you do your other children.
• Don’t limit play opportunities between your child with epilepsy and their brothers and sisters. Any precautions for brothers and sisters will usually apply to your child with epilepsy. For example, no child should ever swim alone. (You should have already spoken to your child’s doctor about any special precautions.)