Epilepsy in children - how to discuss the diagnosis with them and their parents
Epilepsy is a condition that affects the brain and by which the individual has a tendency to have seizures. Children are keen to know why these unpleasant events are occurring. It is advisable to educate them on their condition at the earliest. This will reduce their anxiety and build their confidence. They will take ownership of their epilepsy and recognizing what the diagnosis means to them may help them feel more in control of their situation from the start.
In my clinic, I usually discuss the diagnosis with the child in this manner. ‘The brain is made up of millions of nerve cells that talk to each other and also use electrical signals to control the rest of the body’s functions. If these signals are disturbed the child may have an epileptic seizure or what is commonly called a fit’. The child and parents have many questions and concerns that evolve during the child’s condition and may not be related to the diagnosis itself. I have attempted to address one of these, ‘change in behaviour’ in this article.
Epilepsy is a very individual condition, so the impact of it varies differently with every child. Change in behavior is a common cause of concern for parents and teachers. Having epilepsy and taking anti-epileptic medications will not affect many individuals. However, some may be affected by it in varying degrees.
They may become more withdrawn and irritable. Some may have a subtle change of mood, lack of attention at school, or lack of concentration. All these factors may contribute to a decrement in scholastic achievements and social interaction. Many contributory factors may cause these changes. In some, this change in behavior may be a part of their normal growing up process, and in others, it may be due to embarrassment, isolation, and fear following the diagnosis. These factors can be minimized by educating them on their condition and talking to them regularly about it. The school staff has to be informed about the condition, as they will need to know what to do if a seizure happens
Epilepsy and the Family
Children with epilepsy want to be treated the same as their siblings and to feel that epilepsy is not holding them back. They should be encouraged to take part in the same activities as their peers and siblings, making sure that there is someone with them who can provide help if they have a seizure. They should be encouraged to have dreams and goals as other children. Parents and teachers should reinforce the fact that their seizures will not prevent them from reaching their goals. Many children will not be affected in their ability to learn and progress at school, but others may need extra support and time from their teachers and parents to help them achieve their goals.
As they grow up into the teenage years, they want more independence and choices. Educating them and encouraging them to take ownership of their epilepsy is the most important aspect of their management to help them in making informed choices. They should be aware of the triggers that can make seizures more likely to happen. Compliance with medication and regular follow-up with their doctor is essential.
In a few children, irritability, hyperactivity, inattention, and lack of concentration could be due to the process of epilepsy itself or due to the anti-epileptic medications that have been prescribed. If any such significant changes are noted, you should talk to their doctor about it. The medications can be altered appropriately to reduce these unwanted adverse effects. Usually, these behavioural symptoms are only short-term and disappear after a few weeks. If the seizures are not well controlled, then the seizures themselves could affect the child’s behavior. The pattern of seizures such as their type, frequency, which part of the brain they are originating from, and how long they last can also contribute to their behaviour.
Most forms of epilepsy in childhood remit spontaneously and their anti-epileptic medications can be stopped after two years of seizure freedom. Some children will continue to have seizures and may need to be on treatment longer. Therefore, they need a sustained and professional approach to their behavior.
Accurate information along with a positive outlook will help the child enjoy his/her childhood, in spite of a serious condition such as epilepsy. You, as parents should be willing to discuss epilepsy with your child. They should be told as much as they understand about epilepsy and start showing them ways to manage their condition.
Charles Dickens, Leonardo Da Vinci, Julius Caesar, and Jonty Rhodes are enough proof that children with epilepsy have immense potential. Fyodor Dostoevsky a Russian writer, once said “It is not the brains that matter most, but that which guides them—the character, the heart, generous qualities, progressive ideas.” I would like to add “family and friends” to this.