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Living with your child's epilepsy

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A single seizure – especially a child’s first seizure – usually has its greatest effects on the parent, not the child. Witnessing your child’s first seizure can be devastating for parents.

Did you know that one in every 100 people in South Africa suffer from epilepsy? Yes, this is one of the most common neurological conditions. By now you have visited your neurologist with regard to the causes, treatment and medication of this “electrical storm” in your child’s brain. And, you have done your homework … you’ve read everything that you possibly can to prepare you and your family after the diagnosis. But, all you feel is fear!

To the parents of a child with epilepsy, the world may seem an especially dangerous place. Experts believe that the single biggest issue for parents raising kids with epilepsy is overprotection. Easier said than done, right? But remember, the effects of overprotection on children can be serious and long lasting. It may include dependency, hypochondria, low-self-esteem, under-achievement and immaturity. Remember your feelings about your child’s diagnosis can influence his perception about seizures and epilepsy.

What can trigger a seizure?

Lack of sleep, illness and fever, missed medications, alcohol use, a significant amount of physical or mental stress.

Is it possible to die from a seizure?

It is possible, though rare; to die from a condition of prolonged seizures called status epilepticus. Children who just have seizures are at a lower risk than children who have epilepsy and other neurological disorders; deaths are usually not related to seizures. Earlier studies of death in epilepsy included mostly adults.

Are seizures bad for the brain?

At present too little is known about the effects of seizures on neuron structure and function to understand how they affect the brain, or what their long-term effects might be.

Will epilepsy be part of their life forever?

Many kids with epilepsy do outgrow it and are able to live drug-free and seizure-free as adults.

Will flashing lights from TV’s, computers or video games trigger a seizure?

Flashing lights can trigger seizures in some children. For most kids with epilepsy, TV’s, computers and video games are safe. However, some precautions may be necessary when watching TV or playing video or computer games. Your child should never sit too close to the TV, take a 10 or 15 minute break if playing computer games for longer than an hour, and also avoid these activities when over- tired. The lights in the room should stay on.

Will they be able to drive a car?

If your child suffers from uncontrollable epilepsy he will be disqualified from obtaining a drivers licence, but a certificate from a neurologist stating that the condition is under medical control, could allow your teen to obtain a driver’s licence.

What about sports?

If seizures are well controlled, most children can play most sports. Precautions may be needed though. Water sports need to be supervised by an adult. Jonty Rhodes was diagnosed with epilepsy at the age of six. He was made aware of the various precautions he should take (such as not playing rugby – his type of epilepsy was triggered by head injury) he always wore a helmet, whichever sport he attempted.

What can your teen do to manage their epilepsy?

It is important for your child to play an active part in managing their epilepsy.

To prevent seizures they should:

  • Take their medicine every day at the same time.
  • Get at least 8 hours of sleep each day.
  • Don't use any alcohol, tobacco or other drugs that could interact with their medicine and/or trigger seizures.
  • Encourage them to speak to their neurologist; don’t as a parent do all the talking during appointments.

So, mom and dad, remember that your child is still the same child after the epilepsy diagnosis. Tell them the truth about their epilepsy – keeping their age and level of understanding in mind. Encourage and support them to explore new experiences and to develop a sense of confidence in their abilities.

There used to be an emphasis on what kids with epilepsy can’t do, but nowadays the emphasis is not on what they can’t do, but what they can do. Children with epilepsy can live full, happy and healthy lives.

Sources:www.nationwidechildrens.orgwww.epilepsy.com, kidshealth.org, www.webmd.com, www2.massgeneral.org, epilepsyontario.org, www.aboutkidshealth.cawww.epilepsy.org.zawww.joymag.co.zawww.reea.org.za

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