Epilepsy in Children

My child has epilepsy what next?

Caring for a child with epilepsy can be a challenging task. The way parents deal with this responsibility plays a major role in how children cope with their condition.

Here are a few points that will help you raise your child in a safe, positive, and healthy environment.

  1. Finding the right doctor: The first step is finding a child neurologist. Your local doctor should be able to refer you to a paediatric neurologist or epileptologist who is a specialist in treating all forms seizure disorders including difficult-to-treat cases.
  2. Recording your child's seizure activity: The best way to identify the type of seizure is through a video EEG recording performed in an epilepsy monitoring unit or EMU. If your child does not have a seizure when in the EMU, a video recording of a seizure that may have occurred at home will help your doctor make a diagnosis and choose the correct drug therapy for your child’s condition. You should also maintain a journal of seizure activity, triggers, medication, etc.  Online seizure tracking can be done through www.seizuretracker.com or www.myepilepsydiary.com.
  3. Avoiding triggering factors: Certain medications may induce seizures and hence your doctor should be informed about all medications that your child is currently on or may be prescribed for other illnesses. If your child is sensitive to heat, overdressing and hot environments should be avoided. A cooling vest may also be an option. Blue-tinted, polarized glasses can be used to avoid photosensitivity-induced seizures.
  4. Maximizing seizure control while minimizing side effects: Child neurologists are continually training and are updated on the latest clinical studies and treatment protocols to ensure that your child is getting the best possible care available. You can also study published literature at www.pubmed.com or go to the ICE (Intractable Childhood Epilepsy) website www.ice-epilepsy.org for the newer treatment options.
  5. Following developmental milestones: Epileptic seizures are sometimes associated with developmental delays. Developmental monitoring can be done within the public-school system or through private monitoring. You can contact an infant/toddler program for children under 3 years of age. Children who are 3 years of age or older may require an Individualized Education Plan (IEP) to enhance learning and optimize education. 
  6. Importance of early diagnosis: Early monitoring will determine the need for speech, behavioural, physical and occupational therapy. Certain types of epilepsy are associated with abnormal gait and muscle tone. Identifying these conditions early will help avoid painful changes in the bones and tendons.
  7. Managing prolonged seizures: Seizures that last longer than 5 minutes or cluster of seizures (more than three seizures in 60 minutes) may require special rescue medication. It is preferable to have written instructions from your child’s neurologist regarding when to give rescue medication, when to call an ambulance, and what medications need to be avoided.
  8. Having a sickness plan: Your child’s neurologist may recommend alternative strategies or medications to help your child get through common conditions such as cold or infection without increasing the risk of developing a seizure.
  9. Planning for an emergency:  All caregivers including teachers at school must be specifically told what to do in case of an emergency. If possible, written instructions should also be given. You may also wish to purchase protective mats to prevent a head injury in case your child falls to the ground during a seizure.
  10. Respite care: It is very important to take some timeout for yourself to relax and renew your energy or else you risk experiencing caregiver burnout. To this end, it is a good idea to talk to your doctor or social worker about locating respite care services in your area.

What are the signs of epilepsy?

Epilepsy is a condition caused by abnormal electrical activity in the brain that produces symptoms such as confusion, staring spells, and most commonly, episodes of involuntary shaking (seizures), which may be followed by periods of unconsciousness. Epilepsy usually begins in childhood.

Photosensitivity as a seizure trigger

Photosensitivity can be a serious problem for epileptic patients. If your child has been diagnosed with photosensitive epilepsy, you may wish to avoid the following seizure triggers:

  1. High contrast patterns: These could include patterns such as black and white stripes as well as contrasting patterns in wallpaper or other surfaces. Research studies have indicated that polarized blue sunglasses reduce the effect of high contrast patterns and may help prevent a seizure.
  2. Flashing lights (Strobe Lights): The timing and the intensity of flashing light at which a seizure is triggered differs from person to person. To be on the safe side, you may wish to avoid discos or night clubs that have strobe lights as well as theme parks or firework displays. In case you unexpectedly come across strobe lighting, you should place the palm of your hand over one eye and look away from the light source.
  3. Fluorescent lighting: With a flicker rate of 100 Hz, fluorescent lighting should not be a problem for most people. However, faulty fluorescent lighting has been known to trigger seizures on rare occasions. If fluorescent lighting is causing discomfort, you can opt to use fluorescent light filters where possible.
  4. Low emergy light bulbs or CFLs: These light bulbs have become quite popular because they use 80% less energy and last longer when compared to traditional light bulbs. There have been claims that low energy light bulbs are linked to headaches, nausea and seizures. Research into these claims is still ongoing.
  5. Sunlight: Sunlight through the trees, window blinds, or reflected off wet surfaces such as a pool may cause seizures in people diagnosed with photosensitive epilepsy. Polarized blue tinted sunglasses can be used to minimize the risk of seizure by blocking the horizontally reflected light from hitting your eyes.
  6. Ceiling fans: A light source seen through the rotating blades of a ceiling fan can produce a flickering effect and might trigger a seizure. Slowing down the speed of the rotating fan has been known to reduce the risk of developing a seizure.
  7. Flashing bicycle lights: Red flashing lights emitted from diodes on the backs of bicycles or the flashing lights of a police car or ambulance has been known to induce seizures. When encountering such situations while traveling on the road, it is best to slow down and put some distance between yourself and the flashing light source.

Helping your child avoid the above-mentioned photosensitivity triggers and following the doctor’s instructions can greatly minimize the risk of future seizures.

When to see a child neurologist/Epileptologist?

Infants and children should be referred to a pediatric neurologist or epileptologist at the onset of the first unprovoked seizure (seizure not triggered by infection or fever), especially if the seizures occur often or are prolonged (lasting more than 5 minutes). It is important that a child is diagnosed and treated for epilepsy appropriately and the seizures are controlled as well as possible. In certain syndromes such as Infantile spasms, B-6 dependent seizures, and Dravet syndrome, early aggressive treatment may change the course of illness.

Why is early diagnosis important?

Early diagnosis and treatment of certain seizure disorders such as B-6 dependent seizures, infantile spasms, and Dravet syndrome can help minimize the negative impact of the disorder on the life of the child and improve treatment outcomes.

Who is a Child/Paediatric Neurologist?

Child/Paediatric neurologists are specialists in treating children with disorders of the nervous system. Care for children from birth to young adulthood is the core of their medical practice. They receive advanced training and experience that makes them well qualified to appropriately manage your child’s unique condition.

Who is a Child Epileptologist?

A child epileptologist is a child neurologist who specializes in the field of childhood epilepsy and is better qualified to treat epileptic conditions in children. Both the child neurologist and the child epileptologist complete:

  • Four years of medical school
  • About one or two years of paediatric residency
  • Three plus years of residency training in adult and child neurology

In addition, a child epileptologist also receives further specialization in EEG interpretation and epilepsy diagnosis and treatment.

What types of services do Child Neurologists/Epileptologists provide?

Child neurologists are usually involved in the diagnosis, treatment, and management of the following conditions:

  • Seizure disorders that include seizures in newborn children, febrile convulsions, and epilepsy
  • Medical management of brain tumours and head injuries
  • Weakness associated with the nervous system such as cerebral palsy, muscular dystrophy, and nerve/muscle disorders
  • Headaches/migraines
  • Behavioural disorders such as attention-deficit/hyperactivity disorder (ADHD), failure at school, autism, and sleep problems
  • Developmental disorders such as delayed speech, motor milestones, and neuromuscular coordination problems
  • Mental retardation
  • Hydrocephalus

Dr Ubaid Shah is a paediatric neurologist and epileptologist specializing in childhood epilepsy. Dr Shah provides consultation at Brisbane Child Neurology and Mater Children’s Private Hospital.

What if medications do not work?

Coming soon

  • Australian Medical Association (AMA)
  • Royal Australasian College of Physicians, Australia (RACP)
  • Australian and New Zealand Child Neurology Society, Australia (ANZCNS)
  • Epilepsy Society of Australia (ESA)
  • International League Against Epilepsy (ILAE)
  • International Child Neurology Association (ICNA)