Epilepsy and seizures in children: a first seizure, tests, treatment and keeping safe

The NHS describes epilepsy as a condition that affects the brain and causes seizures, sometimes called fits. Usually the only symptom is having seizures, which can mean the body becoming stiff or floppy, suddenly falling, jerking or twitching, losing awareness or staring into space, unusual feelings such as strange smells or changes in vision, or unusual behaviour. A seizure usually lasts a few seconds or minutes and stops by itself. Symptoms often start in young children and people over 50.

Having a seizure does not always mean epilepsy, since seizures can have other causes. The NHS says epileptic seizures are different from febrile seizures, which can happen when children have a high temperature. Epilepsy Action describes children's seizures in child-friendly terms, including getting a funny taste, a strange feeling in the tummy, pulling at clothes, going stiff then falling and jerking, or staring into space for a few moments.

For a febrile seizure the NHS advises noting the time the seizure starts and ends, protecting the child's head with your hands or something soft, removing dangerous objects, and, once it ends, putting the child in the recovery position and making sure nothing is in the mouth or throat that could affect breathing. It says not to move the child or try to hold them, not to put anything in their mouth, and not to try to cool them by undressing or sponging them with cold water. The NHS epilepsy page points readers to separate first aid guidance for other seizures, and says people with epilepsy usually have a care plan that sets out what to do, so follow the child's own plan if there is one.

For epilepsy in general the NHS says to call 999 if someone is having a seizure and:

• it is the first time it has happened

• it lasts longer than is usual for them, or longer than 5 minutes if you do not know how long theirs usually last

• they do not recover as usual, or have another seizure without recovering in between

• they have had 3 or more seizures in 24 hours

The NHS says a febrile seizure can sometimes happen when a child has a high temperature, usually lasts 2 to 3 minutes and rarely longer than 10, and usually affects children aged 6 months to 6 years. It can look frightening but is unlikely to harm the child or cause long-term effects. A child may become stiff and twitch, become unconscious, be sick or wet themselves, and be sleepy, irritable or confused for up to an hour afterwards.

The NHS says to call 999 or go to A&E if a child has a seizure for the first time, one lasting more than 5 minutes, difficulty breathing, stiffness and twitching on only one side, is more sleepy than usual for over an hour after, or has more than one seizure in 24 hours. A child who has a first febrile seizure needs to be checked in hospital, and may need blood tests, a urine test or a lumbar puncture. Children who have had one have a slightly increased chance of epilepsy later in life, but this is rare, says the NHS.

The NHS says a child who has had a seizure will see a specialist doctor who checks what caused it and asks what happened before, during and after; bringing someone who saw it helps. Tests may include an electroencephalogram (EEG) to check electrical activity, an ECG to check the heart, MRI or CT scans, blood tests and genetic testing. Epilepsy Action says the doctor may ask a parent to keep a seizure diary or film a seizure, that children usually have an EEG, and that a brain scan may also be requested.

The NHS says epilepsy is usually diagnosed if a person has had more than 1 seizure or tests show a risk of more seizures. Epilepsy Action says the cause is only sometimes found, for example after a head injury, a serious infection or where there is family history, and that it is certainly not because of anything the child has or has not done.

The NHS says the main treatment is anti-epileptic or anti-seizure medicine, with emergency medicine for seizures that last longer than usual given by a family member or carer. The choice depends on the type of seizure and the child's age and other conditions, and children may need to try different medicines. A GP and specialist team support the child, with check-ups at least once a year and a care plan that tells family and carers what to do during a seizure. The NHS says to follow the plan and never change doses or stop medicine without advice. Rarely, treatment includes brain surgery, vagus nerve stimulation or the ketogenic diet.

Epilepsy Action says that when children first start the medicine they may feel sleepy, dizzy or a bit sick for a few days, that some children have a medicine change before the right one is found, and that some children grow out of their epilepsy and are able to stop treatment while others carry on. The NHS says that if a person has not had a seizure for 2 years the specialist may suggest gradually reducing treatment.

Epilepsy Action suggests children avoid climbing up high, have a grown-up present for baths or showers and swimming, wear a helmet if cycling and avoid busy roads while still having seizures, and be careful around flashing lights if they have photosensitive epilepsy. The NHS suggests a seizure diary to identify triggers such as tiredness, stress or flashing lights, a family that knows what to do, medical ID and showers instead of baths where possible.

The NHS says seizures are not usually harmful though they can cause accidents. Rarely a seizure lasts a long time or several happen without recovery (status epilepticus), which needs urgent treatment, and there is a small risk of sudden unexpected death in epilepsy (SUDEP), which treatment can reduce. For most people medicine works well and epilepsy has a small effect on daily life.