Medication for children
Treatment for children aged 12 and under
Most people with epilepsy take anti-epileptic drugs to stop or reduce the number of seizures they have. This page looks at the drugs available for the treatment of epilepsy in children. It also answers some of the questions that you may have about anti-epileptic drugs. If you have any questions or concerns about your child’s epilepsy and treatment, their paediatrician or a pharmacist may be able to help.
What is the aim of anti-epileptic drugs?
Anti-epileptic drugs (AEDs) are used to stop seizures happening. They make the brain less likely to have seizures by reducing the excessive electrical activity - or excitability - of the brain's neurones (nerve cells). They are not used to stop seizures while they are happening and they do not cure epilepsy.
Different AEDs work in different ways, but they all aim to stop seizures happening.
Around 66% (66 in 100) of children will get seizure control (stop having seizures) once the best medication is found for them. This depends on the type of epilepsy they have.
'Optimal therapy' is seizure control using the smallest dose of the fewest AEDs, and with the least side effects.
Managing epilepsy can often be a balance between stopping seizures and keeping side effects to a minimum. Also, getting seizure control can sometimes take a while to happen (to find the right drug at the right dose) and this can vary from one child to another.
Some children may not get complete seizure control, even though they have had the most suitable drug treatment. In this case they may need to take more than one type of AED, to reduce seizures as much as possible, while still keeping treatment as simple as possible. This reduces the chances of side effects.
Before starting on AEDs, it is important that the paediatrician finds out as much as possible about your child's epilepsy. This is because the AED that they prescribe depends on the type(s) of seizures your child has. Some AEDs work better for certain types of seizures, or types of epilepsy, than others.
AEDs are taken every day to stop seizures happening. As AEDs may need to be taken over a number of years, the paediatrician will take into account the age and lifestyle of each child when prescribing AEDs.
How the body absorbs and gets rid of medication changes with age. For children under 12, AED doses usually depend on their weight, and so increase as they get older. At about 12 years old, a child will have the same dose as an adult.
The National Institute for Health and Clinical Excellence (NICE) recommends that people with newly diagnosed epilepsy are treated with one drug at a time where possible - this is called monotherapy. If the medication needs to be changed, it should be done very gradually. If the child still has seizures after trying two different AEDs, then the paediatrician may review the diagnosis before suggesting other AEDs to try.
If a single drug does not stop your child's seizures, the paediatrician may add a second drug (so they take two different types of AED each day). This is called polytherapy.
Usually AEDs are started at a low dose that will slowly be increased, if needed, until the most effective dose is found. This varies from one child to another, and is sometimes called their 'individual therapeutic concentration'. This is done by carefully monitoring the child's seizures and how they feel on the drug.
Some children will have a treatment plan. This records the types, doses and how often AEDs are taken. It may be useful to think about who could be given a copy of this plan (for example, their teachers).
AEDs come with a patient information leaflet. This tells you what the medication is, what it is for, and possible side effects.
Suddenly stopping AEDs can cause seizures to start again, or happen more often and last longer than before. Also, taking extra AEDs can cause side effects. For these reasons, any changes to AEDs need to be agreed with the paediatrician.
Versions of AEDs
Most AEDs have at least two names:
- a generic name (for example, carbamazepine) and
- a brand, or trade, name given by the manufacturer (for example, Tegretol).
Some AEDs have more than one generic version and each version can be given its own name.
For some AEDs, different versions of the generic drug can vary slightly and this could affect seizure control. For this reason it is recommended to take the same version of AED all the time, whether it is a generic or brand version. This is sometimes called 'consistency of supply'.
If a prescription only has the generic name of the drug, a pharmacist can give any form of the drug with that generic name. However, if the prescription has the brand name of the drug, the pharmacist has to give that brand. To ensure consistency of supply it might be helpful to get the prescription from the same pharmacist each time. Many pharmacists keep patient medical records and can help with questions about prescriptions. Some can also review medications (called a medicines use review).
If you are not sure if the AEDs you have been given are the same as those your child normally takes, you can check with the pharmacist or doctor.
Sometimes medication is labelled in a different language or has different packaging from usual. Often this happens if the drug has been made in another country and brought into the UK (a 'parallel import'). Some people find that parallel imports affect their seizure control. If you do not want your child to take medication that has been imported from outside the UK you can ask for a supply from within the UK, if possible for that drug. By always taking the same form of a drug there may be less risk of having a seizure.
All medications can cause side effects, but whether or not someone has them depends on their individual reaction to the medication. Side effects can vary from person to person, and from drug to drug. It is important to balance any side effects against the seizure control the medication gives.
Some children have allergic reactions to medication. This is rare but can be serious. A skin rash is often the first sign of an allergic reaction and usually happens soon after starting treatment. If you think your child has an allergic reaction, contact their doctor as soon as possible.
Dose-related side effects happen if the dose is too high. Starting medication at low doses and increasing it slowly may avoid this. Some side effects happen when starting new AEDs, and normally wear off after a few days or weeks. If your child has any side effects that continue it is worth talking to their doctor about them.
If drugs are taken for a long time (many years), long-term side effects may happen. Keeping drug treatment as simple as possible may lower the risk of these effects.
What do side effects look like?
Side effects can be difficult to recognise in babies and young children as they can't say how they are feeling. If your child feels unwell but is not able to tell you, you may notice a change in their behaviour.
Some side effects can be particularly important for teenagers, such as weight gain, acne or those that affect their concentration. Sometimes this means that they don't want to take their medication.
Some side effects are particularly important for girls. Some AEDs can affect a girl's periods, and affect some methods of contraception. Also, some AEDs can affect an unborn baby. Even if these issues are not relevant to your daughter right now, the paediatrician will usually take this into account if a girl is likely to be on AEDs for some years.
If you are concerned about side effects that your child has, or you think they have, you can talk to their paediatrician. Sometimes AEDs can be swapped or doses altered if side effects are a problem.
What can I do if my child has a side effect that is not listed?
The Yellow Card Scheme is a way of reporting side effects to the Medicines and Healthcare products Regulatory Agency (MHRA), particularly any not listed in the patient information leaflet. The MHRA ensures the safety of medications licensed for use in the UK. You can get a Yellow Card form from your GP, pharmacy, hospital or NHS drop-in centre, by calling 0808 100 3352 or from yellowcard.mhra.gov.uk (opens in a new window).
Frequently asked questions
Does my child have to take AEDs?
Around 66% of children will get seizure control with AEDs. But whether to start taking medication or not is a personal choice, and it can be hard to make this choice for another person. You can discuss the possible risks and benefits of your child taking, or not taking, the medication, with their paediatrician. You can also talk about other treatment options. Whatever decision you make, you can talk through with their paediatrician if you have concerns or questions at any time.
Should AEDs be taken regularly?
AEDs work best when they are taken regularly. This is because once taken, they start to be broken down and absorbed into the bloodstream, and go to the brain to start working. As time passes, the drug leaves the body, so the level of drug in the body goes down. Taking the drugs regularly means that the drug is 'topped up' so there is a steadier level in the body all the time.
The exact timing of doses is not usually crucial but it is recommended that the right dose is taken around the same time or times each day, and that they are evenly spaced out. For example:
- if the AED is taken twice a day, take a dose every 10-12 hours
if the AED is taken three times a day, work back from the child’s bedtime to plan the time to take the doses.
Taking AEDs either just before or just after a meal can be a useful routine to remember to take them, and also helps the AED to be absorbed into the body.
For most people, missing one dose on a rare occasion is unlikely to result in a seizure. However, generally if a dose is missed and the AED is usually taken:
- once a day - give the forgotten dose as soon as you remember it; or
- twice a day - give the forgotten dose if you remember within six hours of it being due, otherwise, don't take the forgotten dose and just take the next dose at the due time.
The patient information leaflet should have specific instructions for what to do.
How can I help my child take AEDs?
This depends on your child's age and how involved they can be in their epilepsy management. Young children may need help to remember their medication, and setting a routine may help. Encouraging older children to get involved in managing their medication may help them to feel more in control and involved in managing their epilepsy.
Drug wallets can help to take the right dose at the right time. They usually have seven containers to keep medication in (one for each day of the week). Each container is divided into sections for the morning, afternoon and evening. Dispersible tablets (that dissolve in water) can't be stored in drug wallets because they react to the air.
You can buy drug wallets through our online shop.
What forms of AED are available?
Some AEDs come in a number of forms:
- tablets that can be swallowed whole
- tablets that can be chewed or crushed
- tablets that can be dissolved in water, milk or fruit juice
- liquids like syrups, which may be flavoured to taste nice, and sugar-free so they are kinder to teeth
- sprinkles and granules that can be added to food.
For babies, medication that can be dissolved in water can be given in a feeding bottle or with a special oral syringe. Giving medication this way, rather than mixed in with food, means you can check that they have taken all of it even if they don't eat all of their food.
Some drugs are called chrono or prolonged release (for example, Epilim Chrono or Tegretol Prolonged Release). 'Chrono' and 'prolonged release' mean slow-release. In slow-release drugs, the active ingredient is released more gradually, and is taken less often, than in non-chrono forms.
You can talk to your child's paediatrician, or a pharmacist, about what forms your child's AEDs are available in.
What should I do if my child is sick?
If your child vomits or has diarrhoea this could affect how well the medication is absorbed. General guidelines are that if your child is sick:
- within one hour of taking the medication, you can give another dose; or
- more than an hour after taking the medication, wait for the next dose time.
The patient information leaflet should have specific instructions for what to do.
If you are concerned, or if your child is ill for a long time, it may help to talk to their paediatrician or GP about what to do.
What if my child is on other medication?
Some AEDs affect how other medications work and some other medications can affect how AEDs work. There is usually no interaction (when different drugs affect each other) between AEDs and paracetamol, Calpol, Duprol and Nurofen. However, it is often a good idea to check with the GP, paediatrician or pharmacist before giving any medications, including those you buy over the counter (not on prescription). This helps to avoid possible interactions.
Will AEDs affect my child's behaviour?
The aim of medication is to stop seizures with minimal side effects or impact on behaviour. However, some children may have side effects, even if only short-term (disappearing after a few weeks). Also, if their seizures are not well controlled, the seizures themselves could affect the child's behaviour.
Some changes in a child’s behaviour could be due to other things, such as:
- where in the brain the seizures happen and what happens during the seizure
- how often the seizures happen
- how the child feels about having epilepsy and how it affects them
- how other people react to their epilepsy
However, some changes in behaviour are a normal pattern of growing up and may not be related to their epilepsy.
Will AEDs affect my child’s learning?
Many children with epilepsy find that their epilepsy and medication does not impact on their learning. However, for other children, epilepsy might affect their learning. Problems with learning could be due to the cause of the epilepsy or because they are having seizures. If you are concerned about this you can talk to the paediatrician.
Will my child always be on AEDs?
Some children's seizures stop happening on their own - called spontaneous remission. This can happen with some childhood epilepsy syndromes. However, some children need to take AEDs for a long time, sometimes many years.
If a child has not had a seizure for two or more years then you might think about them withdrawing (coming off) their AEDs, to see if their seizures have stopped. This depends on the child and the type of epilepsy or syndrome they have. In some syndromes seizures are known to stop around a certain age. With others, the seizures are likely to start again if medication is stopped.
Withdrawing from AEDs is best done with advice from the paediatrician as it needs to be done very slowly, often over several months. The paediatrician can advise what to do if the seizures start again. For most children, if seizures start again, taking the same AED straight away gives the same seizure control as before. But sometimes the AED might not work as well as it did before.
When thinking about coming off AEDs, it is important to consider the impact on your child's life if their seizures start again.
Some types of epilepsy continue into adulthood. If this is the case, your child will usually start to see a neurologist at around 16-18 years of age. Changing from seeing a paediatrician to a neurologist is often called transition, and can be a good time to review their epilepsy and its management.
Monitoring your child's epilepsy involves checking whether their seizures are controlled or how often seizures happen, and if they are having side effects.
Therapeutic drug concentration monitoring (TDM)
Therapeutic drug concentration monitoring (TDM) is one way of managing epilepsy treatment, and is done by measuring the amount (concentration) of the drug in the blood. This is done to try and get the best seizure control with the least side effects for each person.
For some AEDs, an alternative to testing blood levels is testing saliva levels. This may be easier and less painful than a blood test and gives a more accurate measurement of the therapeutic level of the AED.
TDM can be useful in certain situations and with certain AEDs, but it is not used routinely in children. If you have any questions about drug monitoring, you can ask your GP or paediatrician.
What happens if AEDs don't work?
If a child does not respond to AEDs, other treatment options may be available. They include epilepsy surgery, vagus nerve stimulation (VNS) therapy and the Ketogenic diet.
Usually a seizure will stop by itself. However, if a seizure continues for more than 30 minutes (or one seizure follows another with no recovery in between) this is known as status epilepticus (or 'status').
Status during a tonic clonic (convulsive) seizure is a medical emergency and needs urgent treatment. Seizures that last longer than usual, or an increased number of seizures, often happens before an episode of status. For some people, missing doses of AEDs can trigger status.
Treatment of status (prolonged seizures)
The emergency medication used for the treatment of status is usually a sedative. Sedative drugs have a calming effect on the brain and can stop a seizure. The point at which emergency medication is used depends on how long someone's seizures usually last.
The two emergency medications used to treat status in the community (outside the hospital setting) are midazolam and diazepam.
- Buccal (oromucosal) midazolam - is given into the buccal cavity (the side of the mouth between the cheek and the gum).
- Rectal diazepam - is given rectally (into the bottom).
Both these drugs are sedatives. Although it is rare, they can cause breathing difficulties so the person must be closely watched until they have fully recovered.
For children who have gone into status before, their doctor may prescribe midazolam or diazepam so that a parent or carer can give it to them if necessary in future.
Specialist training is needed to give emergency medication. It is also important that every individual who is prescribed diazepam or midazolam has a written plan (or protocol) about when to give the medication.
Epilepsy Society is grateful to Professor Helen Cross of the UCL Institute of Child Health, Great Ormond Street Hospital for Children, and Young Epilepsy, for her guidance on this information.
You can order a copy of our leaflet 'medication for children' from our online shop as part of our 'first five free' offer.
© Epilepsy Society
Information produced in September 2012