With International Epilepsy Day on February 11, and National Epilepsy Week running until February 17, find out more here
It can be a shock to learn your child has epilepsy, and feelings of dismay, inadequacy and even guilt are common. But while genes, a birth or head injury, fever convulsions or biochemical imbalances may play a part, in nearly 70% of cases the underlying cause remains unknown. (This is known as idiopathic epilepsy.) Rather than brood, aim to stay emotionally strong, confident and positive to help your child cope.
- Educate yourself about epilepsy – Empower yourself with knowledge in understanding the condition, treatment and effect it may have on your child’s health, emotions, social interaction and schooling. Know how to act during an epileptic seizure and when to call the doctor/emergency services. Contact Epilepsy South Africa (0860 EPILEPSY/0860374537, www.epilepsy.org.za, or find them on Facebook), or visit the sites of other reputable medical or academic institutions.
- Help your child understand the condition, and answer their questions honestly in age-appropriate terms. Even a toddler can grasp the idea that their brain controls their body, and that sometimes it sends the wrong messages to the body. (Epilepsy SA has a series of animated video clips to help children understand epilepsy.)
- Tell them what happens when they have a seizure and what you do to support them, so they know they are in good hands and can tell others what to do if they’re asked.
- Explain that medication can help control the seizures, but that they need to take care to stay safe when doing things like bathing, swimming or climbing, and do these only with adult supervision.
- Emphasise their abilities and what they can do, rather than what they can’t do – encourage them in things they are good at, whether art, music or sport, to build their self-esteem.
- Educate their siblings, friends, carer or teacher about their condition, and what should be done in the event of a seizure. (See Epilepsy First Aid.) Have a written protocol in case of a seizure, daily medication times and doses and a contact number of a responsible parent/guardian printed on your fridge, in your child’s school bag and available to their teacher/care giver in case of adverse event. This is very important especially in children under 5 who cannot relay information.
- Make sure your child takes their medication when they should, and in older children, teach them to take responsibility for this as they get older and are able to take ownership of their condition.
- Have a routine at home that includes three balanced meals, healthy snacks, exercise and lots of rest. “The reassuring regularity can help limit seizures, as stress is a significant seizure trigger,” says Marina Clarke, national director of Epilepsy SA.
- Avoid using negative words and phrases like “fit” or “attack” for a seizure, and refer to epilepsy as a condition, rather than a disease or illness.
- Don’t be overprotective, or allow epilepsy to become an excuse to avoid chores or schoolwork – encourage your child to live a full, engaged, independent life.
- Always wear a medic alert bracelet in case of the unfortunate event that a child might be found unconscious or in a confused, postictal state.
- Have regular follow ups at their physician/pediatrician to ensure correct drug levels, dose of medication and to surveil potential side-effects of medication.
The accuracy of this information has been verified by Dr Ilana Joubert.
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