Epilepsy management in children and young people

What does managing childhood epilepsy involve?

Epilepsy means a tendency to have repeated seizures, which are bursts of abnormal electrical activity in the brain. Seizures look very different from child to child — from brief 'absences' to stiffening and jerking — and epilepsy has many different causes and types.

Managing epilepsy is not one treatment but ongoing care. It usually involves anti-seizure medicine to make seizures less likely, a plan for keeping your child safe day to day, an emergency plan for a prolonged seizure, and regular review by a children's specialist as your child grows and their needs change.

The aim is the fewest seizures with the fewest side effects — ideally none of either. Many children become seizure-free on medication, but it can take time and adjustment to find what works, and not every child becomes completely seizure-free. Some childhood epilepsies are outgrown.

Medicine controls seizures; it does not 'cure' the underlying tendency, and it must be taken regularly to work. Stopping suddenly can trigger seizures, so changes are always made with the specialist.

Types, options & approaches

There may be different ways to do this. The right approach depends on the clinical question and your circumstances.

Options at a glance

These are the main approaches described in this guide. The right option depends on the diagnosis, your goals and what your clinician thinks is safe.

Preparing for your treatment

• Keep a seizure diary: dates, times, what the seizures looked like, how long they lasted, and any triggers (illness, missed medicine, poor sleep).
• Bring videos of seizures if you safely can — they help the specialist enormously.
• Bring a full list of medicines and doses, including anything bought over the counter.
• Note any side effects you have wondered about: sleepiness, mood or behaviour changes, rashes, or anything new.
• For older teenagers, be ready to talk about school, exams, alcohol, contraception, driving and independence.
• Make sure school or nursery has an up-to-date care plan and knows what to do in a seizure.
• Bring questions — managing epilepsy is a partnership and your observations guide treatment.

What happens

Care is led by a children's specialist (a paediatrician with expertise in epilepsy, or a paediatric neurologist) supported by an epilepsy nurse. They confirm the type of seizures and epilepsy, often using the story, videos, an EEG and sometimes a brain scan (MRI).

If medicine is recommended, it is usually started at a low dose and increased gradually. You will be told what to expect, what side effects to watch for, and how to give it. Where there is a risk of prolonged seizures, you will be trained to give rescue medicine and given a written emergency plan.

At reviews, the team checks how well seizures are controlled, asks about side effects and development, and adjusts treatment if needed. They will talk about safety, school and, as your child gets older, the practical issues of teenage and adult life. Blood tests are sometimes done to monitor certain medicines.

Is this treatment right for me?

A good consultation should explore whether it's the right choice for you now — including reasons to wait or consider something else.

Before you decide

Use this as a shared-decision checklist. The aim is not just “can this be done?”, but whether it is right for you, now, with the risks and alternatives clearly understood.

Two points deserve particular attention. First, never stop or change anti-seizure medicine suddenly, as this can trigger seizures. Second, sodium valproate can seriously harm an unborn baby; it should not be used in girls or women who could become pregnant unless there is a strict pregnancy-prevention plan, and any concerns should be discussed with the specialist rather than acted on alone. The rules on valproate have recently widened. It is no longer normally started in any new patient under 55 — male or female — unless two different specialists agree in writing that no other suitable treatment will work, or that the reproductive risks do not apply. There is also precautionary advice for males: a young man who could father a child should use condoms, and ask his partner to use effective contraception, while he is taking valproate and for 3 months after stopping; he should not donate sperm during that time, and should arrange a specialist review before trying for a baby. As with any change, valproate must never be stopped suddenly.

Published figures to discuss

Outcomes vary widely by epilepsy type. Many children become seizure-free on the first or second medicine, while a minority have epilepsy that is hard to control. Side-effect rates depend on the specific medicine. Because of this variation, and because Vuemedics does not invent figures, the rates below are limited to well-established, broad statements; your specialist can give figures for your child's specific epilepsy and medicines.

These are literature figures, not a personalised prediction. Your own risks and likely benefits depend on your circumstances, your health, and how your care is carried out and followed up.

What happens afterwards

Epilepsy management is ongoing rather than something you recover from. 'Afterwards' here means living well day to day, responding safely to seizures, and reviewing treatment over time.

• Some tiredness or settling-in side effects when a medicine is started or changed.
• A period of dose adjustments before the best control is found.
• Occasional breakthrough seizures, especially with illness, missed doses or poor sleep.
• Regular reviews and, for some medicines, blood tests as a normal part of care.

Aftercare

• Give medicine at the same times every day; use reminders or a dosette box, and do not run out.
• Never stop or change the dose without the specialist — sudden changes can trigger seizures.
• Keep rescue medicine in date and make sure trained adults know how and when to use it.
• Keep school, clubs and carers supplied with an up-to-date care and emergency plan.
• Protect sleep and manage illness early, as both can affect seizure control.
• Keep a seizure diary and report changes in pattern, new side effects or rashes.
• Attend reviews and any monitoring blood tests, and tell other doctors and dentists about the epilepsy and medicines.
• For older teenagers, follow the agreed rules on driving, alcohol and contraception, and discuss pregnancy plans early.

• An up-to-date seizure diary and any videos
• A current list of medicines and doses
• In-date rescue medicine and trained adults to give it
• A written emergency plan (when to give rescue medicine, when to call 999)
• School / club care plan shared and signed
• A named contact (often the epilepsy nurse) for questions
• Dates for the next review and any blood tests

⚠ Get urgent help if…

• A seizure lasting 5 minutes or more, or one seizure running straight into another without recovery — give rescue medicine if prescribed and call 999.
• Difficulty breathing, blue lips, or the child not waking up after a seizure — call 999.
• A seizure in water, or a serious injury during a seizure — call 999.
• A new or spreading skin rash after starting a medicine — get medical advice the same day.
• A big increase in how often or how long seizures last — contact the epilepsy team.
• A fever with a rash that does NOT fade under a clear glass — call 999 (possible meningococcal sepsis).
• Thoughts of self-harm or a serious change in mood (some medicines can affect mood) — seek help promptly.

Who to contact: your clinician, clinic or test provider first (keep their number to hand). For urgent advice when you can't reach them, call NHS 111. In an emergency, call 999.

General guidance — it doesn't replace the specific advice your specialist gives you.

Results & realistic expectations

Good management means seizures are as well controlled as possible with side effects the child can live with. Many children become seizure-free, but not all do, and 'success' is judged for each child against their own seizure type and goals.

Being seizure-free on treatment is a very good result, but it does not prove the epilepsy has gone — that is a separate decision the specialist makes over time, sometimes considering a careful, planned reduction of medicine. Treatment reduces risk; it does not offer a guarantee against any future seizure.

Epilepsy and its treatment are reviewed over years, not fixed once. Some childhood epilepsies are outgrown, and a small, carefully planned withdrawal of medicine may be considered after a long seizure-free period — only ever with the specialist. Others continue into adult life, when care transfers to adult services. As a child grows, doses, medicines and the whole plan are revisited.

Related tests, treatments or support

Epilepsy care often sits alongside support for related needs — for example learning, behaviour, sleep or mental health. Some children also have an EEG, brain scan (MRI) or blood tests as part of diagnosis and monitoring. Where seizures are hard to control, specialists may add or consider other options such as a ketogenic diet, vagus nerve stimulation or surgery.

Follow-up & long-term care

Children with epilepsy are reviewed regularly by the specialist team, with an epilepsy nurse usually available between appointments. Reviews check seizure control, side effects, development and school, and update safety and emergency plans. Older teenagers have a planned transition to adult services, and certain medicines need monitoring blood tests.

• Take daily medicine reliably and keep a small buffer so you never run out.
• Keep rescue medicine in date and trained adults available to give it.
• Keep the school and emergency plans current as your child grows.
• Attend reviews and any monitoring blood tests.
• Protect sleep and manage triggers such as illness.
• For older teenagers, keep driving, alcohol, contraception and pregnancy plans under review with the team.

Repeat, follow-on and what comes next

• It is common to adjust doses or change medicines before the best control is found.
• Breakthrough seizures can happen even with good treatment, especially with illness, poor sleep or missed doses.
• Reducing or stopping medicine after a seizure-free period is a planned specialist decision and can occasionally lead to seizures returning.
• Care is re-evaluated over time, including the move to adult services.

Ask what happens if the result is unclear or needs repeating, and what is included if further tests or follow-up are needed.

What good aftercare looks like

• A named contact, usually an epilepsy nurse, for questions and advice between appointments.
• A written, up-to-date emergency plan stating when to give rescue medicine and when to call 999.
• Care plans shared with school and clubs, and regular reviews of control, side effects and development.
• Honest, ongoing discussion of safety, SUDEP risk where appropriate, and (for teenagers) driving, alcohol, contraception and pregnancy.
• A planned, supported transition to adult epilepsy services.

What affects the cost

Costs vary a great deal between people and providers, and we don't publish prices. What matters is understanding what drives the cost and making sure your quote is complete. The main things that affect it:

• The complexity of the epilepsy and how often reviews are needed.
• Whether tests such as an EEG, brain MRI or blood tests are required.
• Specialist input (paediatric neurologist as well as paediatrician) where seizures are hard to control.
• Epilepsy nurse support and rescue-medicine training.
• Ongoing medicine costs and any monitoring blood tests.
• Letters and care plans for school and other services.

• The specialist's fees and how often reviews are expected.
• The cost of any tests (EEG, MRI, blood tests) and who reports them.
• Whether rescue-medicine training and a written emergency plan are included.
• How prescriptions and monitoring blood tests are arranged and charged.
• Who to contact between appointments and whether there is an extra cost.
• What happens, and what it costs, if seizures are not controlled and more input is needed.

On the NHS? Specialist epilepsy care for children — including epilepsy nurses, rescue medicine training and emergency planning — is a core NHS service; private appointments are sometimes used for speed or a second opinion, but ongoing care and emergencies are usually best linked to NHS services.

You're entitled to your total cost in writing — including reports, follow-up and what happens if the result is inconclusive — before you decide.

Consent traps and marketing red flags

These are not small details. They are often where patients lose choice, time to reflect, or realistic expectations.

Choosing a specialist safely

• Check the specialist is on the GMC Specialist Register for this area.
• Make sure they work at a CQC-registered service, and look for membership of the relevant Royal College or professional body.
• You're entitled to time to consider and to have your questions answered before you agree — the specialist who looks after you should explain it, not a salesperson.
• Be wary of pressure: time-limited offers or deposits taken before you've had time to think are red flags, not bargains.
• You're entitled to your total cost in writing — including any follow-up — before you decide.

How Vuemedics verifies every consultant →

Take this to your consultation. A good specialist will welcome every one of these.

• What type of epilepsy and seizures does my child have, and what does that mean for treatment and outlook?
• Why this medicine, what side effects should I watch for, and does it need blood test monitoring?
• Does my child need rescue medicine, and can you train us and give us a written emergency plan?
• What is our seizure safety plan for water, baths, sleep and activities?
• For my teenager: what are the rules on driving, alcohol, contraception and pregnancy, and when should we discuss them?
• What would make you consider changing treatment, or reducing medicine in future?
• Who do we contact between appointments, and when should we call 999?
• Are you on the GMC Specialist Register for this area, and which Royal College or professional body are you a member of?
• Will you be the specialist who carries out my treatment, and who looks after me afterwards?
• What are the risks for someone like me, and how often do your own patients have a problem or need it repeated or redone?
• What does a realistic result look like — and what can this treatment not achieve?
• What are my options, including waiting, doing nothing for now, or choosing a different approach?
• Can I have written information, results and aftercare instructions in a format I can use, including any accessibility or communication support I need?
• What is the total cost in writing, including any follow-ups, and how much time do I have to decide?

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How we made this page

Medically reviewed by a GMC-registered consultant. Written in plain English, checked against NHS, NICE, GMC and relevant Royal College / specialist-society guidance, and kept under review. No clinic paid to appear on this page, and we publish no pricing. This is general information to help you prepare — it is not a substitute for advice from your own clinician. How we review our guides →

Source hierarchy: UK regulator and NHS/NICE guidance first, then relevant Royal College or specialist-society guidance, then peer-reviewed evidence for procedure-specific figures where available.

Sources & standards: NICE NG217 — Epilepsies in children, young people and adults NICE NG217 — Treating status epilepticus and prolonged/cluster seizures Epilepsy Action — Emergency (rescue) medication Epilepsy Action — Driving rules for epilepsy NHS — Epilepsy in children MHRA — Valproate use in girls and women MHRA — Valproate reproductive risks MHRA — Valproate use in men (precautionary contraception advice) DVLA — Assessing fitness to drive (Great Britain) DVA Northern Ireland — Telling the DVA about a driver medical condition

Reviews reflect patients' experience of care, not clinical outcomes. For procedure volumes and outcome data see PHIN.

Last medically reviewed 2026-09-21. Spotted something wrong or out of date? Report an error in this guide.