Epilepsy - the thunderstorm in the brain

Paul is a good pupil and enjoys playing with his friends. However, he has been having increasing problems concentrating for some time now and keeps daydreaming. His eyes are blank and he doesn't notice when someone speaks to him.

The eight-year-old is struggling to keep up at school and his friends begin to avoid him. The parents have the feeling that something is wrong with Paul. When his teacher also describes that Paul has changed dramatically, the parents turn to the paediatrician. At the end of the assessment process, the diagnosis is finalised: epilepsy.

Epilepsy is often not initially recognised in children and adolescents. Many parents think of epilepsy as convulsions. This type of seizure does occur, but more often in adults and only rarely in young children.

According to Georgia Ramantani, neuropaediatrician and head of epileptology at Zurich Children's Hospital, there are many forms of epilepsy in which the seizures are not so dramatic: «As a parent, caregiver and teacher, you have to be alarmed if a perfectly healthy child suddenly can't keep up at school, shows behavioural problems, behaves aggressively, withdraws into themselves or has socialisation problems, for example. This happens out of the blue. The child changes drastically within a very short space of time.»

One in 20 children affected

Epilepsy usually occurs for the first time at the age of two to three years. However, it can appear for the first time at any time during childhood or adolescence, although the incidence is significantly higher in the first few years of life.

Epilepsy is a widespread disorder. Up to 5 per cent of the population up to the age of 20 have at least one epileptic seizure in their lifetime, with girls and boys or men and women affected almost equally often.

Epilepsy is a disorder of brain function. The parents are not to blame.

Georgia Ramantani, neuropaediatrician

However, an epileptic seizure is not the same as epilepsy: An epileptic seizure is a disorder of the brain due to a short-lasting increased discharge of nerve cells. We speak of epilepsy when epileptic seizures occur repeatedly without a recognisable trigger. This means that the seizure is not provoked and therefore cannot be attributed to a specific cause, such as a brain injury due to an accident, a stroke or meningitis.

There are more than ten forms of epileptic seizures and many more forms of epilepsy, as different types of seizures occur in combination due to different causes. Which symptoms occur during an epileptic seizure and how intense they are depends on how many nerve cells discharge at once, which area of the brain is affected and whether the discharge spreads. The intervals between seizures can vary from seconds to years or even decades.

Parents and carers should take the warning signs seriously - every day counts.

The diagnosis of epilepsy comes as a shock to Paul's parents. They inevitably ask themselves why this could happen and what it means for Paul and the family.

Georgia Ramantani confirms that such a diagnosis can represent a total loss of control: «The diagnosis sounds terrible. Just 100 years ago, epilepsy was categorised as a mental illness. Today, however, we know that it is definitely not. The cause of epilepsy is a brain dysfunction. The parents are not to blame.»

Fast action is crucial for the prognosis

There are many causes of brain dysfunction, including potential triggers such as brain injuries, genetic predispositions, brain malformations or metabolic disorders. Often, however, no visible or clear cause for the epilepsy can be identified.

It is crucial for parents and carers to take alarm signs seriously, because every day counts. The earlier the disease is recognised, targeted and successfully treated, the better the prognosis for the child's cognitive development. If treatment is recommended, doctors endeavour to keep the time window from diagnosis to the start of therapy short.

Epilepsies can be recognised and classified by measuring brain waves using an EEG (electroencephalogram). Neuropaediatrician Georgia Ramantani explains that children with difficult-to-treat epilepsies sometimes have to attend weekly or monthly check-ups at the paediatric hospital.

Once epilepsy has been diagnosed, treatment with medication is usually started. These are intended to normalise the brain waves and prevent new seizures. The drugs show an effect within a few days or weeks, which means that the dosage can be adjusted relatively quickly.

It is important to individually weigh up which therapy offers the best quality of life for the child and their environment.

According to Georgia Ramantani, there are currently around 25 seizure suppressants that are selected and used depending on the type of seizure and epilepsy syndrome. Long-term administration of medication usually shows the best effects, but unfortunately severe side effects can also occur. The art of therapy is to give as little medication as possible, but also as much as necessary.

At the Children's Hospital Zurich, the necessity of the medication is discussed openly, along with the prospects of good efficacy and possible side effects. These include undesirable effects on the child's cognition, attention and behaviour. Some preparations are known to cause severe word-finding disorders as a side effect. Children often find it difficult to speak and show a poor cognitive profile in language performance tests.

Getting a grip on life again

It can be a challenge for parents and affected children to accept a strong drug therapy with drastic side effects, even if they are aware of the necessity.

The ultimate goal of epilepsy treatment is freedom from seizures, without side effects. In reality, this is a challenge and not always feasible.

«One third of the children become seizure-free promptly after being put on their first medication, which is well tolerated. Another third have occasional seizure relapses with well-tolerated medication. A final third have seizure relapses and struggle with side effects despite numerous attempts at treatment,» says Georgia Ramantani. It is therefore important to weigh up which therapy offers the best quality of life for the child and their environment on an individual basis.

Actively coming to terms with the diagnosis opens up many opportunities. Knowing that these can be temporary episodes gives you back a lot of creative freedom and control.

It can be unsettling at the beginning that medication must be taken regularly even in times without obvious symptoms. That's why doctors should make it clear that discontinuation and irregular or incorrect doses can quickly lead to relapses. «I like to compare medication to an umbrella, which you should always take with you because it can start raining at any time,» explains Ramantani.

Inform and involve family members and neighbours

Which strategies are helpful in dealing with the illness must be considered on an individual basis. It is helpful if parents deal with the topic constructively, are open to questions and remain in dialogue with specialists. For example, treatment should not be limited to medication alone if the seizures are accompanied by other impairments. Specialists such as remedial teachers, speech therapists, occupational therapists and psychologists offer valuable support to affected children and families.

The involvement of relatives is still one of the most effective measures for maintaining quality of life. It makes sense to have a network of contacts who can support affected families in the long term. This can be in the form of organisational support when many medical appointments are due, or through conversations that provide support in difficult moments.

It is also advisable to inform and involve the wider environment such as daycare centres, schools or clubs. «Unfortunately, some parents don't talk about the illness outside of their family for fear of stigmatisation. Support from school or other carers is particularly important,» says Ramantani.

It was very helpful for Paul that the parents involved the school management at an early stage. This enabled the teacher to correctly assess his behaviour and respond appropriately. The special needs teacher was able to provide support with the school problems and cushion the social difficulties. In the event of an epileptic seizure, the teaching team knew where to find the emergency medication. This gave everyone involved a sense of security and understanding.

Experience shows: Every illness is different for each individual. Every child and every family has to find their own way of dealing with it. Activating all protective factors makes children and their environment strong for their life with epilepsy.