Your questions answered
Below are a number of frequently asked questions about epilepsy and ant-seizure medications (ASMs) for children and young people.
Most ASMs will be available in a form suitable for children and young people. For young children, they’re most likely to be in liquid form.
All ASMs should be taken with food, if taken on an empty stomach they can make you feel sick.
Some medications come in a sprinkle form and some tablets can be crushed into food but check with your pharmacist before doing this.
Slow-release tablets should not be crushed.
It’s important to take ASMs at set times each day to maintain constant levels in the blood for the best seizure control.
If you miss a dose and remember up to three hours after the time it should have been taken, take the missed dose immediately.
If you remember only at, or near, the time the next dose is due, just take the usual dose.
If you’re a parent, and your child has missed a dose, do the same. Give your child the dose if you remember within three hours. If you only remember close to when the next dose is due, give your child the usual dose.
When ASMs are being taken regularly, they shouldn’t be stopped suddenly without advice from your doctor.
Always keep a record of the different medications prescribed.
We can all feel sure we remember which medications were prescribed in the past, but it’s easy to forget.
Find out about monitors, alarms, apps and subscriptions.
It’s best to have a record of when a medicine was started and stopped, the dose given, the results and any side effects.
Always check you have enough medication so you don’t run out.
Medications don’t always work and seizures may continue even with the right dose of the ASM.
If seizures continue as often as before, your doctor will recommend a different ASM.
This may be as an ‘add-on’ to the first ASM, which must still be taken.
Or, it may replace the first, which will need to be stopped gradually.
This can be very frustrating, because starting and stopping medications can take a long time to get right.
Again, don’t be discouraged – be patient and stick to the plan.
If you vomit within 15 minutes of taking a dose of medication, or you can see it in the vomit, take the dose again. If you can’t see the medication in the vomit, don’t take it again.
If you’re a parent and your child vomits within 15 minutes of taking a dose of medication, or you can see it in the vomit, give the dose again. If you can’t see the medication in the vomit, don’t give it again.
If you’re concerned, speak to your pharmacist or GP.
Continue with the same dose of medication and keep hydrated with fluids.
Consult your GP if you become unwell or can’t keep fluids down, or the diarrhoea is severe or does not settle within 24 hours.
If you’re a parent and your child has diarrhoea, continue with the same dose of medication and keep your child hydrated with fluids.
Consult your GP if your child becomes unwell or is not drinking, or if the diarrhoea is Severe or does not settle within 24 hours.
In the case of taking, or giving, too much medication, seek urgent medical advice from your doctor or pharmacist.
Some medicines may not cause much of a problem if an extra dose is taken, but others can cause side effects if the levels in the blood rise even a little.
Most medications have both a brand name and a generic name – usually the chemical name of the active drug.
When new drugs are developed, the manufacturers have exclusive rights to make that drug for a set period of time, as they have invested in the research, development and testing over many years.
This results in a branded drug.
Once this period is finished, other manufacturers are allowed to make the same drug and it is then called by its generic chemical name.
Generic drugs are generally cheaper. But it may be important for those on ASMs to remain on the branded version. Children, in particular, are very sensitive to any changes in medication.
If you’re a parent, your child’s consultant (specialist doctor) and GP will be able to prescribe the branded medication.
If there are any problems with a substitute brand, talk to your pharmacist and/or your doctor.
You can also download the Medicines and Healthcare products Regulatory Agency’s information sheet for patients or carers, "Antiepileptic drugs: changing between different manufacturers’ products", from the GOV.UK website – scroll to the bottom of the page to the "Further information" section.
With most ASMs, the normal dose of paracetamol or ibuprofen will not generally cause any problems.
But, ibuprofen and other anti-inflammatory drugs may increase the effects of phenytoin, an ASM used for preventing tonic-clonic seizures.
So, always consult your pharmacist or doctor before taking these or, if you’re a parent, giving these to your child.
Most of the common medications used in young children are safe to take alongside ASMs.
If you’re a parent, your GP will know what medications your child is on, but if their consultant has made a recent change to your child’s medication or its dose, tell your GP.
Also, always check with the pharmacist if you’re buying other over-the-counter medicines.
Children with epilepsy can be safely immunised with routine childhood vaccines if their condition is stable.
If their epilepsy is still being investigated, you can postpone your child’s immunisations.
Some vaccines can cause a rise in body temperature that can occasionally trigger a febrile seizure (a convulsion caused by a fever), especially in children with a family history of these.
The vaccine can still be given as normal, with the child monitored and treated as necessary for a rise in temperature.
A high temperature can occur within 24 hours of the 6-in-1 vaccine.
This can be prevented with regular paracetamol for 24 hours after the vaccine.
With the MMR vaccine, your child may have a temperature rise up to a week afterwards.
Teenagers and students are offered a meningococcal vaccine to protect against meningitis.
This can safely be given if seizures are stable. Any fever after the immunisation can be treated with paracetamol.
Girls and boys aged 12–13 years are offered the HPV vaccine. This is usually given at school.
Find out about HPV vaccine side effects.
If you’re a parent and you’re uncertain about any dose changes, check with your GP, who will receive details from your child’s consultant.
If you’re worried about side effects that your child is having, then your GP, epilepsy specialist nurse or pharmacist are all possible points of contact.
The consultant or neurologist usually initiate changes in medication doses.
For non-emergency queries, you can call the NHS on 111 to speak to an adviser.
There’s no evidence that children or young people with epilepsy are at higher risk of side effects after COVID-19 vaccination, including seizures, worsening of their epilepsy or brain injury.
As with other vaccines, a COVID-19 vaccination can cause a fever, which in some people could increase the chance of having a seizure.
If you have seizures triggered by fever, or are the parent of a child with seizures triggered by fever, speak to your healthcare provider – GP, consultant or epilepsy specialist nurse, as appropriate – about:
- Ways to reduce the risk of fevers triggered by vaccines causing seizures, eg taking paracetamol regularly for 48 hours after vaccination
- Locations with medical staff on hand where you, or your child if you’re a parent, should get a vaccination
- Emergency medication and individualised emergency management plans
Find out more about COVID-19 vaccine boosters.
