Dr Carole Buckley and Dr Colin Dunkley give guidance on understanding and treating non-febrile seizures in children and young people.
Top ten tips:
1 Take a detailed history to determine if the seizures may be epileptic
Seizures can be a one off or an ongoing symptom of a range of acute and chronic disorders. It is important to take an accurate history to establish the type of seizure, whether it has an epileptic basis and to consider any possible underlying causes.
This is not always straightforward. For example, as many as 80% of those referred to a first seizure clinic will not have epilepsy.1
The misdiagnosis rate of epilepsy in the UK is approximately 30%. Other conditions that can be misdiagnosed as seizures include faints, daydreaming, panic attacks, sleep disturbance, migraine, breath-holding, cardiac abnormalities or non-epileptic attacks (pseudo-seizures).
2 Understand the diagnostic criteria for epilepsy
Epilepsy is the commonest significant neurological disorder and affects people of all ages. It is usually diagnosed when there are two or more epileptic seizures, more than 24 hours apart. Approximately half of those with epilepsy have no known underlying cause; known causes include infection, structural brain abnormalities, metabolic, immune-related or genetic factors.
Epileptic seizures are now classified as generalised onset (including tonic-clonic and absence seizure), focal onset (previously called partial seizure) and unknown onset (when the beginning is not known).
An aura is the experienced first sensation of some focal epileptic seizures.
An epileptic seizure has an ictal phase, which correlates with the electrical activity in the brain and ends with the post-ictal recovery period.
Some people recover immediately, while others may take several hours to return to normal.
3 Refer seizures in children or young people to the seizure clinic
Many children or young people will present to the emergency department after a first convulsive seizure, and after assessment be referred to a paediatric first seizure clinic.
If they present in general practice the vast majority will need referral for further assessment as accurate diagnosis is the key to effective treatment.
For most, the parents or carers can be reassured that the seizures themselves rarely cause lasting damage.
It is also helpful if parents or carers can video any further episodes and keep accurate descriptions of any seizures they have witnessed.
4 Urgently refer epileptic spasms in infants to the seizure clinic
In general practice, be particularly aware of epileptic spasms in infants, as these can be easily misdiagnosed at first. Urgent referral is important. These occur in very young children, usually under the age of one, and can cause a seizure that can be mistaken for colic or reflux. Typically, they cause a sudden bending forward and stiffening of the body and limbs, are bilateral and last just a few seconds, recurring frequently every few seconds. They represent a chaotic brainwave pattern seen on EEG and are associated with loss of skills if untreated. There are about 400 cases a year in the UK.2
5 Be aware that a perceived trigger may not actually be causing the seizures
A trigger is an event that occurs consistently before a seizure and more often than by chance. To establish a trigger, it is not usually necessary to keep an accurate diary noting the time and situation of a seizure. It is common to ascribe a trigger to seizures only to realise after looking at the diary that the triggering event occurs quite regularly but doesn’t always cause a seizure. Common triggers for different seizure types may include sleep deprivation, flashing lights, alcohol or drug use, stress, menstrual changes and intercurrent illness. Identifying a trigger can give clues to the nature of the seizure and often help to lessen the frequency.
6 Give parents or carers safety-netting information following a first seizure
Seeing a child have any type of seizure is a frightening experience. The Royal College of Paediatrics and Child Health (RCPCH), in conjunction with key organisations such as the RCGP, has produced a leaflet to ensure both parents and carers, as well as children and young people, have correct early information on what to do following a first seizure. First Seizure, First Safety-Net includes signposting, safety and first aid advice.3 Further advice about seizures and epilepsy can be found at the RCPCH’s decision-support tool (see resources).
7 Monitor medication compliance and support ongoing prescriptions
Epilepsy treatment is confined to those with confirmed epilepsy.4 Treatment is guided by the type of epileptic seizure, the frequency and the side-effects of medication. The primary aim is to be seizure free, as this is shown to be associated with improved quality of life and, in some epilepsies, improved learning outcomes.
The most important role for the GP is to support ongoing prescriptions, monitor compliance, consider any side-effects of medication and offer support for any new concerns. Escalation to the epilepsy team is essential if there are problems. Rescue medication may be required if there is any history of prolonged seizures (those that last five minutes or longer). This is most commonly in the form of buccal midazolam and does not take the place of regular treatment. There should be an individual care plan and training in the circumstances for which rescue medication is needed.
8 Other treatment options
While medication is the mainstay of treatment some patients may also need surgery, a ketogenic diet or neurostimulation.
Surgical intervention, while not common, may be considered if medication has not been successful, or an MRI identifies a focal area suitable for resection. It can either involve resection of the affected area or separation of an area from the rest of the brain.
The ketogenic diet is a high-fat, low-carbohydrate, controlled protein diet that has been used since the 1920s for the treatment of epilepsy. It is an established treatment option for children with hard-to-control epilepsy but should be introduced with the help of a specialist paediatric dietitian to prevent harm.
Neurostimulation can be either vagus nerve stimulation (VNS) when a stimulator is connected to the left vagus nerve and sends regular mild stimulations to calm down the irregular electrical activity that leads to seizures, or deep brain stimulation (DBS) with surgical implantation of stimulators when surgery is contraindicated. DBS is not currently funded by the NHS and carries some significant risks but can be requested using exceptional funding routes in those with very hard-to-manage epilepsy.
9 Be aware of the impact of epilepsy on everyday life
Unfortunately, there still can be a stigma associated with epilepsy, and comorbid learning and mental health problems are common. There may be activities from which the child or young person is unnecessarily excluded, although some activities require specific supervision, for example swimming.
Bathing will need closer supervision because of the risk of a seizure occurring in the bath, and as such, showers are usually recommended. Most careers are possible with appropriate occupational health advice, except for in the armed forces. Common adverse effects of medication include tiredness, increased changes in appetite and behaviour. It is also important to recognise the impact on the care givers and siblings who may find themselves constantly on alert for the next seizure.
10 Reassure that outcomes for childhood epilepsy are generally good
Most children with epilepsy may have no serious consequences and can achieve good seizure control on one or two medications. However, there will be some who have drug-resistant seizures or associated mental health and learning problems.
Sudden unexpected death in epilepsy (SUDEP) is a particular risk in young people, particularly where there are ongoing night-time seizures or drug adherence problems.
After two years without seizure activity it is possible in some children to consider reducing and stopping epilepsy medication. This is more likely to be successful in those with specific epilepsies like childhood absence epilepsy and childhood epilepsy with centrotemporal spikes.
Because of the impact of Covid-19, GPs may find themselves supporting families and young people for a prolonged period before access to specialist services is available. Giving the family the First Seizure leaflet3 and if necessary asking for specialist support via email will help worried carers and young people through a time of uncertainty.
Dr Carole Buckley is a retired GP and RCGP clinical representative
Dr Colin Dunkley is a consultant paediatrician at Sherwood Forest Hospital NHS Foundation Trust and RCPCH Epilepsy12 audit clinical lead
1 Beach R, Reading R.
The importance of acknowledging clinical uncertainty in the diagnosis of epilepsy and non-epileptic events, Arch Dis Child 2005;90:1219-22 tinyurl.com/y26r4ao7
2 The UK Infantile Spasms Trust (UKIST).
3 Royal College of Child Health and Paediatrics (RCPCH). First Seizure, First Safety Net: Following a first seizure without fever in children and young people. December 2019 rcpch.ac.uk/first-seizure-information
4 NICE. Epilepsies: diagnosis and management. CG137 nice.org.uk/guidance/cg137
Paediatric Care Online UK (PCO) pcouk.org/
Young Epilepsy youngepilepsy.org.uk/
Epilepsy Action epilepsy.org.uk