Studies show that the mere diagnosis of epilepsy causes the most difficulty for the family.
When an illness or medical uncertainty affects a family members, whether a father with a heart condition, a child with diabetes or a mother with migraine headaches, the entire family is affected. With each of these conditions, various aspects of family life can be altered. The same is true with epilepsy.
People with epilepsy do not live in isolation
Epilepsy affects not only the individual with epilepsy but also can have a great impact on all members of the family unit. Many of the negative events experienced by children with epilepsy are likely to extend to all family members.
As stress in the family increases, it may exasperate any pre-existing marital quarrels .
Perceptions Matter
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Parents' reaction
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 importance of attitude
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.
Interventions
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.
Children's reactions
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.
How does epilepsy affect different members of the family? Find out below.
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Parents
Caring for a child with epilepsy adds extra pressure to an already demanding job. Regular breaks, social connection, and time alone are essential—without them, stress, exhaustion, and burnout creep in fast. Lean on family when possible, and consider trained babysitters, special-needs daycares, or parent-to-parent arrangements to get the rest you need.
Seizures and medical responsibilities often disrupt routines—appointments, medication schedules, school calls, and unexpected care needs. Plans may change quickly, and time with siblings might get pushed aside. These disruptions are part of the landscape, not a sign of failure.
Parents’ Experiences
Shock, fear, and confusion during early seizures.
Worries about their child’s safety and the unpredictability of future seizures.
Feeling helpless or unsure if they handled an episode “properly.”
Anxiety brought on by extra medical appointments and routine changes.
Tips for Parents
- Stay connected with your local epilepsy agency, support groups, and other parents who understand the journey.
- Seek counselling if needed—for you, your child, or the whole family.
- Help your child talk to friends, ask questions at appointments, and recognize their own emotions.
- Plan family outings with a simple back-up strategy in case a seizure occurs.
- Consider practical questions, such as siblings’ roles during seizures, when to pause activities, and when an outing should end early.
Parenting Through Developmental Stages
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Infants (0–18 months)
Let babies explore milestones naturally. Over-helping, even with good intentions, can slow development. If fears get overwhelming, seek guidance from a professional familiar with parent–child dynamics.
Toddlers (18 months–3 years)
Independence grows here. While it’s natural to worry about bumps and bruises, children still need chances to try, climb, and test boundaries. Caregivers should aim for a balance between safety and independence.
Preschoolers (3–5 years)
Kids need structure, imagination, play, and social experiences. Overprotection or excessive permissiveness can backfire—so maintain clear expectations while still supervising appropriately.
Latency Age (7–11 years)
Self-esteem comes from mastery. Avoid holding children back unnecessarily, and help them learn to explain their seizures to peers in ways they understand. Your comfort with epilepsy shapes theirs.
Adolescents (12–18 years)
Teens naturally push boundaries as they seek independence and peer connection. Epilepsy can intensify family worries, but open conversation works better than rigid control. Encourage involvement in safe social environments and help them build a peer group familiar with their needs. This sets the foundation for confident adulthood.
Grandparents
People of earlier generations are more likely to have misunderstandings and stereotypes regarding epilepsy. They may be set in their ideas and opinions of the disorder and may be unwilling to accept it in the way parents feel they should. Parents should try to explain to grandparents what epilepsy is so they can better understand it. They may even want to invite grandparents to attend one of their child’s medical appointments so they can meet the doctors and learn more.
Grandparents may be afraid to take care of their grandchild if they feel they won’t be able to manage the child should s/he have a seizure. While this is understandable, there are things that parents can do to help grandparents feel more confident in their abilities to help the child having a seizure. Parents should explain to them what they will need to do if the child has a seizure.
If the grandparents spend time with the parents and witnesses them during a seizure, they will probably be more confident in handling a seizure themselves. Of course, this may not be possible, especially if the child’s seizures are very infrequent. Still, a good description of what the child’s seizures look like will let grandparents know what to expect and will help prepare them to deal with a seizure, should one occur.
Siblings
Siblings of a child with epilepsy can feel overlooked, jealous, scared, or overly responsible. They may struggle with mixed emotions, feel disconnected from parents, or worry about seizures without understanding what’s happening. With reassurance and clear information, many of these feelings can be eased.
Siblings are an important part of socialization. Playing, arguing, and spending time together give the child with epilepsy a sense of normalcy and help build social skills. They shouldn’t be asked to treat their brother or sister differently, as that can lead to resentment.
Siblings as Caregivers
Brothers and sisters can be helpful by staying calm during seizures and getting an adult if needed. Involving them in simple, age-appropriate ways helps them feel included and valued.
However, they should never be placed in a supervisory or parental role. Offering support is healthy; making them responsible for managing the epilepsy is not.
Tips to Help Siblings
- Give clear, age-appropriate explanations about epilepsy and correct myths.
- Reassure them that seizures are not contagious, not their fault, and rarely dangerous.
- Make space for conversations so they can express worries, frustration, or questions.
- Spend individual time with each child to reduce feelings of being left out.
- Help siblings learn how to explain seizures to friends.
- Treat all children equally when it comes to responsibilities and expectations.
- Encourage normal play between siblings, following the same safety rules for everyone.
Babysitters
For a child with well controlled epilepsy, a competent babysitter should be able to manage quite well. It can, however, be very difficult to find a babysitter/caregiver for a child whose epilepsy is not well controlled. This is no surprise, since helping a child manage a seizure is a great responsibility. Regardless of the child’s level of control, parents should ensure the babysitter/caregiver is confident and content in dealing with the child who has epilepsy.
Whether or not the child’s epilepsy is well controlled, parents should leave clear instructions regarding:
General care of the child
What to do in the event of a seizure
Where they can be reached
The physician’s phone number and/or other emergency medical phone numbers
Caregivers
- Provide a clear explanation of what epilepsy is.
- It is important to note that epilepsy is not contagious, and it is not a mental illness.
- A list of the medications the child is taking (including the dosages), who should administer it and when it should be administered. Also mention any pertinent side effects which the child may experience.
- A description of the type of epilepsy the child has, any auras the child experiences, what a seizure looks like and the frequency of seizures.
- How to administer first aid to the child experiencing a seizure, both during and following the seizure.
- Any other relevant information including emergency phone numbers.
