Seven things to know about epilepsy in children as new drug rolled out

Children in England living with a rare and severe form of epilepsy could soon benefit from a new drug being rolled out on the NHS.

Fenfluramine has been recommended by the National Institute for Health and Care Excellence (NICE) for patients aged two and over with Lennox–Gastaut syndrome (LGS).

LGS is a rare and severe form of epilepsy that starts in early childhood and is resistant to many treatments. It is thought that around 1-2% of the 60,000 children in England with epilepsy have LGS.

The drug, the first non-cannabis-based treatment approved for this form of epilepsy, is taken as an oral liquid medicine daily and works by increasing the levels of serotonin in the brain to reduce seizures.

Lisa Suchet, whose 10-year-old son has LGS, says the drug offers her son hope of “seizure freedom”.

“My son has suffered with seizures since he was five weeks of age, including drop seizures, which are the most devastating,” she said. “They occur without warning, cause immediate collapse and the risk of head injury is high due to the sudden fall.”

Suchet says until now there have been so few effective drugs for seizure control. “Many don’t work for all patients; many have debilitating side effects or interactions with other meds a patient might have to take,” she explains.

“That there is another option now available, which has shown effective results and minimal side effects is a huge comfort. It is essentially providing a chance of seizure freedom, which is essentially another chance at life really; for the patient and the family or carers who are impacted so significantly by this awful disease.”

What is epilepsy?

Epilepsy is a neurological condition (affecting the brain and nervous system) where a person has a tendency to have seizures that start as a disruption of signals in the brain.

Some children stop having seizures after a period of being on treatment, others, however, need treatment for long periods.

The condition is more common than many people realise, with around one child in every 200 living with epilepsy.

What causes epilepsy in children and is it hereditary?

The NHS says that while there is sometimes a clear reason for epilepsy developing, for example a severe blow to the head, an infection of the brain such as meningitis, or brain damage due to lack of oxygen during a difficult birth, in other cases it isn’t obvious.

It’s possible a child’s epilepsy could be partly caused by their genes affecting how their brain works, as the NHS estimates around one in three people with epilepsy have a family member with it.

What happens during a seizure?

Seizures are caused by a sudden burst of electrical activity in the brain, which temporarily disrupts the way messages are passed between brain cells.

There are a number of different types of epileptic seizure, but the type a child has depends on which part of their brain is affected by the condition.

The Epilepsy Society says there are two main types of seizure: focal seizures and generalised seizures.

“Focal seizures start in only one side of the brain and generalised seizures affect both sides of the brain,” the charity explains. “Generally, adults and children have the same types of seizure. However, some may be more common in childhood (for example, absence seizures which can be very brief and are often mistaken for ‘daydreaming’ or not paying attention).”

The kind of symptoms a child experiences during a seizure can include:

• unusual sensations such as a strange taste in the mouth or a strange smell, or a rising feeling in the stomach.

In some types of seizure, a child may be aware of what is happening. In other types, a child will be unconscious and have no memory of what happened afterwards.

Some children may have seizures when they are sleeping (sometimes called “asleep” or ‘nocturnal’ seizures).

What causes a seizure?

The Epilepsy Society says some children’s seizures can occur in response to triggers such as stress, excitement, boredom, missed medication, or lack of sleep.

The charity recommends keeping a diary of your child’s seizures, which can help to see if there are any patterns to when they happen and what may have triggered them.

What to do if your child has a seizure?

If a child experiences a tonic-clonic seizure (when their body goes stiff and the type of seizures most people associate with epilepsy) the Great Ormond Street Hospital recommends not trying to stop it.

“Instead, move any furniture out of the way, try to loosen any tight clothing around the neck and stay with the child until the seizure has finished,” the site explains. “As soon as uncontrolled movements finish, lay the child on their side in the recovery position.”

If a child has another type of seizure, it is recommended you sit them down quietly and stay with them until they are fully recovered and alert. Reassure the child calmly.

The NHS recommends calling 999 for an ambulance if your child:

• is having a seizure for the first time

• has a seizure that lasts more than 5 minutes

• has lots of seizures in a row

• has breathing problems or has seriously injured themselves

Do children grow out of epilepsy?

The number and type of seizures your child is having may change over time. But some children do outgrow their epilepsy by their mid to late teens. According to the Epilepsy Society this is called “spontaneous remission”.

Can epilepsy in childhood be cured?

There is currently no cure for epilepsy, but treatment can help most children with epilepsy have fewer seizures or stop having seizures completely.

• medicines called anti-epileptic drugs – these are the main treatment

• surgery to remove a small part of the brain that’s causing the seizures

• a procedure to put a small electrical device inside the body that can help control seizures

• a special diet (ketogenic diet) that can help control seizures

In very rare cases when medication does not help, and scans indicate a structural brain abnormality is the cause, surgery may be suggested.

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