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Infants, Toddlers, and Preschoolers with Epilepsy

Patterns for healthy development

When it comes to managing epilepsy in young children, it is helpful to first consider what typical development is for infants and toddlers:

  • They generally have normal growth and weight gain, according to the standard charts used by paediatricians.
  • They achieve developmental milestones: these are specific skills achieved by most children at a particular age or stage in their development. They include motor skills (such as rolling over, sitting up, crawling, standing, walking, and holding things), language skills (such as making noises and talking), cognitive skills (such as recognizing caregivers and understanding simple commands), and social skills (such as smiling, responding to others, and interacting).
  • They begin to develop a sense of themselves, first as infants by developing a bond to their parents (attachment) and gaining trust in their environment, and later as toddlers by testing this environment (autonomy).
  • They enhance their knowledge of the world around them by constantly exploring, asking questions, and developing language ("Why this? Why that? Why the other thing?").
  • They begin to become more curious and independent, choosing some activities and rejecting others.

Impact of epilepsy on an infant, toddler, or preschooler

Attachment

Attachment is the term used to describe the parent-child bond from the child’s perspective. Attachment develops as a sort of "dance" between a baby’s need for protection and comfort and his parent’s response.

So-called attachment behaviours occur when an infant is emotionally distressed, physically hurt, or ill. In response to a threat, a child will stop what he is doing and seek close contact with his parents, cling to them, and signal his need for comfort. The way a parent recognizes and responds to the baby’s signs of fear or distress teaches the baby what to expect from the world around him. Secure attachment develops when a child knows he can rely on his parents to comfort and protect him. This in turn gives him confidence in the world as a safe place and allows him to establish trusting relationships with others later on.

For an in-depth look at attachment, please see the AboutKidsHealth  Attachment series by Susan Goldberg, PhD.

Although few studies have looked specifically at epilepsy in relation to attachment, a medical condition such as epilepsy may affect the relationship between an infant and his parents for a variety of reasons:

  • Babies with medical conditions such as prematurity, developmental delays, malformations, chronic illnesses, or seizures often look and behave differently compared with normally developing infants. This may be the result of physical limitations, medical treatment, or developmental differences. They may be less alert or have difficulty feeding, or their signs of distress may be subtle and hard to interpret.
  • These babies may have additional needs, such as monitoring, medication, invasive procedures, or hospitalization. This may reduce the amount of time that a baby spends with his parents and may interfere with the normal processes of bonding and attachment.
  • Parents often interact with many different members of the care team. While this provides important care for the baby and support for the parents, it can also make the parents less confident in their ability to meet their baby’s needs.
  • Babies with seizures and epilepsy have particular concerns. Although we cannot know exactly what a baby experiences during a seizure, it is probably safe to assume that a baby with epilepsy and frequent seizures sees the world differently than a normally developing baby. Because seizures can be subtle in infants, it can be hard for parents to tell whether a baby is upset or frightened or if he is having a seizure, and therefore it can be hard to know how to respond.

The available evidence indicates that parents can usually overcome these difficulties. For example, despite medical complications and prolonged hospital stays, most premature infants are securely attached to their parents by the time they are 12 to 18 months old. To promote attachment, it is important to take advantage of "windows of opportunity" when the child is feeling well and not having seizures to play and interact with your baby. For advice and help, talk to a member of the epilepsy care team.

Autonomy

When a baby becomes a toddler, his main "job" in terms of his social and emotional development is to separate himself from his parents and gain more autonomy and independence. His parents can encourage this process by giving him a safe environment and the freedom to explore it.

If a toddler has frequent seizures, it can be difficult for parents to achieve a balance between protecting him and encouraging him to take risks and explore the world around him. For this reason, it is important to make the home a seizure-friendly "safe zone" to minimize the chance of injury.

Other developmental concerns

Specific developmental concerns, including potential problems with self-esteem, emotions, learning, and behaviour, are discussed in more detail in the "Quality of Life" section.

Discuss any concerns you have about your child’s development with the epilepsy care team and find out what signs you may want to watch for that could give you reason for concern. Once a problem is spotted, early intervention is best. The epilepsy care team can suggest the right specialist to consult.

Parental concerns

When parents have an infant, toddler, or preschooler with epilepsy, they are often concerned about:

  • the fact that their young child cannot talk about symptoms of epilepsy and side effects of the medications
  • dealing with their own, and their child’s, anxiety about seizures
  • dealing with the seizures, at home and with a caregiver
  • dealing with medication side effects
  • developing a treatment plan that does not interfere with the child’s normal daily activities, including naps
  • giving medications on time
  • ensuring a healthy lifestyle: eating on time, adequate rest and sleep, avoiding over-exertion
  • normal child development: will he have language, learning, or behaviour issues?
  • instructing day-care staff or nannies about their child’s seizures
  • how to promote activities that will reinforce attachment in the infant and encourage autonomy in the toddler

Coping strategies

Some helpful hints in coping with epilepsy in a young child include:

  • Take advantage of seizure-free "windows of opportunity" to play, talk, cuddle, and interact with your baby.
  • Explain epilepsy to your child in an age-appropriate way. Use books, pictures, play, or videos. Talk about what needs to happen on a daily basis, such as taking medication, in a brief and practical way. Set a positive tone by focusing on what can be done to better manage the seizures.
  • Try to adopt a matter-of-fact approach to seizures and medications. Young children quickly pick up on parents’ anxieties. Try to be calm and reassuring when carrying out routines. Encourage your child, through play or artwork, to explore unusual feelings he may experience with his seizures.
  • In two-parent families, share responsibility for routines wherever possible. In single-parent families, try to have a friend or family member help with routines on a regular basis. Sharing the responsibility can help to decrease caregiver stress.
  • Create a healthy lifestyle for your child. Try to establish a regular routine for eating, sleeping, and medications. Encourage your child to be active and participate in activities to the best of his ability. Try to ensure he gets enough rest.
  • Make your house, and wherever else your child may spend a lot of time, a seizure-friendly zone by creating a safe environment that can minimize injuries in case of seizures or falls.
  • Try to achieve a balance between protecting your child and encouraging him to take risks. Encourage your child to become involved in activities and implement the necessary safety measures to maximize his chance of success.
  • To maximize help, minimize stress, and get the best possible care for your child, use the various support systems available, including the epilepsy care team, epilepsy support groups, family, friends, daycare staff, and other caregivers.
  • Watch for early signs of problems with language, learning, and behaviour, and get help early. Talk to the epilepsy care team and get their advice on evaluating and treating any such problems.
  • Educate other caregivers about your child’s condition so they can provide a safe environment while promoting your child’s normal development.

Irene Elliott, RN, MHSc, ACNP

Janice Mulligan, MSW, RSW

2/4/2010




Notes: