About childhood epilepsy
There are over 600,000 people with epilepsy in the UK.
Epilepsy is a disease of the brain in which there is a tendency to having repeated seizures.
The brain controls the way our body works. The billions of nerve cells in our brain communicate with each other through electrical signals, so electrical activity is happening in our brain all the time.
During a seizure there is disruption of electrical signals resulting in sudden abnormal, intense, excess electrical brain activity.
An estimated 1% of children worldwide have epilepsy. There are over 60,000 children with epilepsy in the UK.
It starts most often during the first five years of life.
Sometimes the epilepsy is from an obvious cause such as brain damage from a difficult birth, an infection such as meningitis, or a severe head injury. For others, the cause is genetic.
In up to 70% of children with epilepsy the cause is unknown.
There isn't a test that can prove that you do or you don't have epilepsy. Tests such as the electroencephalogram (EEG) - which records brain electrical activity - can give doctors useful information.
A diagnosis of epilepsy should be made by a doctor with specialist training in epilepsy.
There are many different types of epilepsy. People with epilepsy will feel, and or behave in many different ways depending on where their seizure begins, and how widely and rapidly it spreads.
Some symptoms include: loss of awareness, loss of vision or unable to see, numbness, tingling or electric shock like feeling in body, arm or leg, feeling of panic/fear, pleasant feelings, appearing distracted/daydreaming.
Although a tendency to repeated seizures is central to the diagnosis of epilepsy, epilepsy is more than just seizures. Up to 95% of children with epilepsy will have significant difficulties in learning and or behaviour.
These difficulties can often go underdiagnosed and mismanaged when the emphasis is only on treatment of seizures.
Epilepsy is mainly treated with medicines but if they do not work, other treatment options inlcude the ketogenic diet, vagus nerve stimulation and in some cases brain surgery.
In 30% of cases the seizures are not stopped by current treatments.
30% of children with epilepsy will continue to have seizures into adulthood. Most children will become seizure free before they enter adulthood but 30% will continue to have seizures. Children that are more likely to be seizure free by adulthood are those who have no additional learning problems. In adulthood, a further 20% will eventually become seizure free within 40 years after their epilepsy started.
Some adults who had epilepsy in childhood, will have successful careers and happy families. However, overall, adults who had childhood onset epilepsy, whether they become seizure free or not, are more likely to have worse socioeconomic outcomes and to die at an earlier age than the general population. Thus, long-term support may be needed.
Listed below are some organisations providing useful information and support for people affected by epilepsy.
Epilepsy Research Institute UK
Royal Hospital for Children and Young People Edinburgh