Epilepsies in children, young people and adults

Develop an individualised antiseizure medication treatment strategy with the person, and their family and carers if appropriate, taking into account:

• sex

• age

• seizure type

• epilepsy syndrome

• whether treatment is needed

• risks and benefits of antiseizure medications, including their importance in reducing the risk of epilepsy-related death

• possible interactions with any other medicines taken

• any comorbidities

• the preferences of the person, and their family or carers if appropriate

• personal circumstances, such as education, employment, likelihood of pregnancy, driving, alcohol use, travel

• how and when antiseizure medicines need to be taken.
  
  See also NICE's guidelines on shared decision making and decision making and mental capacity.

Take into account any particular issues for older people starting an antiseizure medication, especially those with comorbidities, for example:

• check for possible interactions with other medicines they are taking

• use a tailored approach to dosage and titration, usually starting at a lower dose and increasing slowly

• check if the person would benefit from an approach that takes into account multimorbidity; for more information, see NICE's guideline on multimorbidity.

Use a single antiseizure medication (monotherapy) to treat epilepsy whenever possible.

Review the diagnosis of epilepsy if seizures continue despite an optimal dose of a first-line antiseizure medication.

If first-line monotherapy is unsuccessful and epilepsy diagnosis remains confirmed, try monotherapy with another antiseizure medication, using caution during the changeover period:

• Increase the dose of the second medicine slowly while maintaining the dose of the first medicine.

• If the second medicine is successful, slowly taper off the dose of the first medicine.

• If the second medicine is unsuccessful, slowly taper off the dose of the second medicine and consider an alternative.

If monotherapy is unsuccessful, consider trying an add-on treatment.

When starting an add-on treatment, carefully titrate the additional medicine and review treatment frequently, including monitoring for adverse effects such as sedation.

If trials of add-on treatment do not result in a reduction in seizures, use the regimen that provides the best balance between effectiveness and tolerability of side effects.

Discuss with the person, and their family and carers as appropriate, the benefits of taking as few medicines as possible to maintain seizure freedom or control.

Start treatment with an antiseizure medication once the diagnosis of epilepsy is confirmed.

Consider starting treatment after a first unprovoked seizure if any of the following apply:

• an examination identifies signs of neurological deficit

• the electroencephalogram (EEG) shows unequivocal epileptic activity

• after a discussion of the risk of further seizures, the person or their family or carers consider the risk unacceptable

• brain imaging shows a structural abnormality.

Follow MHRA safety advice on switching between different manufacturers' products of a particular antiseizure medication.

Be aware that phenytoin is associated with an increased risk of serious skin reactions in people of Han Chinese or Thai family background.

Be aware that carbamazepine and potentially medicines with a similar chemical structure (such as oxcarbazepine and eslicarbazepine acetate) are associated with an increased risk of serious skin reactions in people of Han Chinese, Thai, European or Japanese family background.

Be aware that long-term treatment with some antiseizure medications (such as carbamazepine, phenytoin, primidone and sodium valproate) is associated with decreased bone mineral density and increased risk of osteomalacia. Follow the MHRA safety advice on antiepileptics: adverse effects on bone and consider vitamin D and calcium supplementation for people at risk.

Give women and girls with epilepsy information and support that is tailored to their age-specific and developmental needs. Review regularly information provided about:

• contraception

• folic acid supplementation

• conception

• pregnancy

• breastfeeding

• caring for children

• menopause.

Discuss with women and girls with epilepsy who are able to have children (including young girls who are likely to need treatment when they are able to have children), and their families or carers if appropriate, the risks to an unborn child of taking antiseizure medications during pregnancy, such as congenital malformations, neurodevelopmental impairments and fetal growth restriction.

Assess the risks and benefits of treatment with individual antiseizure medications when prescribing antiseizure medications for women and girls who are able to have children, now or in the future. Take into account the latest data on the risks to the unborn child and be aware that there are important uncertainties about the risks, particularly with newer drugs. Follow the MHRA safety advice on antiepileptic drugs in pregnancy.

Specifically, discuss the risks to the unborn child of using sodium valproate during pregnancy, including the increased risk with higher doses and polytherapy. Follow the MHRA safety advice on valproate use by women and girls.

Be aware that some antiseizure medications, for example, carbamazepine, oxcarbazepine, phenytoin and topiramate, can impair the effectiveness of hormonal contraceptives. Refer to the summary of product characteristics (SPC) and BNF or BNF for children for individual drug advice on the interactions between antiseizure medications and contraception.

Be aware that oestrogen-containing hormonal contraceptives and hormone replacement therapy can impair the effectiveness of lamotrigine.

Explain that breastfeeding for most women and girls taking antiseizure medications is generally safe and should be encouraged. Support each mother to choose a feeding method that bests suits her and her family.

Prescribers should consult individual drug advice in the SPC and the BNF or BNF for children when prescribing antiseizure medications for women and girls who are breastfeeding. Decisions about antiseizure therapy and breastfeeding should be made between the woman or girl and the prescriber, and take into account the benefits of breastfeeding alongside the potential risks of the medication affecting the child.

Arrange regular (at least annual) monitoring reviews for adults with epilepsy and any of the following:

• a learning disability

• drug-resistant epilepsy

• a high risk of sudden unexpected death in epilepsy (SUDEP; see the section on reducing the risk of epilepsy-related death)

• a serious comorbidity, such as complex psychosocial, cognitive or mental health problems

• who are taking antiseizure medications associated with long-term side effects or drug interactions

• who are able to get pregnant and are taking valproate or any other high-risk teratogenic antiseizure medication (see also the MHRA safety advice on antiepileptic drugs in pregnancy).
  
  See also, the section on epilepsy specialist nurses for epilepsy specialist nurse sessions for adults with ongoing seizures.

Discuss monitoring reviews with children and young people with epilepsy and their families and carers if appropriate, and agree a frequency for regular reviews that is:

• individually tailored to the child or young person's needs, preferences and the nature of their epilepsy and

• at least every 12 months.
  
  See also the section on infantile spasms syndrome for recommendations on additional monitoring reviews for children with infantile spasms. See the section on epilepsy specialist nurses for recommendations on epilepsy specialist nurse sessions for children and young people with ongoing seizures.

Consider monitoring antiseizure medication levels in people with epilepsy and any of the following:

• uncontrolled seizures

• side effects from their medication

• a specific clinical condition needing closer supervision (such as pregnancy or renal failure)

• poor adherence to medication.

Explain to people with epilepsy and, if appropriate, their families and carers, that they can ask for a review of their care if they have concerns, need support or their care needs change, for example, to support medicines withdrawal, pregnancy planning or to review treatment if seizures recur. Provide contact details and information on how to access epilepsy services.

Refer women and girls with epilepsy who are planning pregnancy or are pregnant to an epilepsy specialist team for a review of their antiseizure medication options.

Ensure information about the care of women and girls during pregnancy is shared between the epilepsy specialist team, a specialist obstetric team and primary care.

Explain to women and girls who are pregnant or are planning pregnancy the importance of adherence to their antiseizure medications and that they should not stop their medication without medical supervision (see also recommendation 4.6.1 on referral).

Discuss the relative benefits and risks of adjusting medication with the woman or girl planning pregnancy to enable her to make informed decisions. This should include discussing the balance between the risks of poorly controlled seizures and the risks to the baby when antiseizure medicines are taken in pregnancy or while breastfeeding.

Consider more frequent monitoring reviews for women and girls with epilepsy who are pregnant and are prescribed antiseizure medication, if they:

• have a learning disability

• are aged under 16 years

• have active epilepsy (a seizure within the past 12 months)

• have bilateral tonic-clonic seizures

• have modifiable risk factors for SUDEP (see recommendation 10.1.2).

Consider monitoring antiseizure medication levels in women or girls with epilepsy who are planning pregnancy and are considered to be at risk of their seizures worsening.

When starting monitoring in women or girls planning pregnancy, obtain a baseline (pre-conception) concentration of antiseizure medications (for example, carbamazepine, lamotrigine, levetiracetam, oxcarbazepine, phenobarbital and phenytoin) and check adherence to their medication.

For women or girls with epilepsy who are pregnant or planning a pregnancy and taking carbamazepine, lamotrigine, levetiracetam, oxcarbazepine, phenobarbital or phenytoin, monitor and adjust dosages following the MHRA safety advice on antiepileptic drugs in pregnancy.

If monitoring of antiseizure medications levels is carried out in pregnancy, discuss the results with the woman or girl with epilepsy to inform choices about any adjustments to doses.

If dosing of antiseizure medications is changed during pregnancy, discuss and make an antenatal plan with the woman or girl to return her medications to pre-conception dosages. Antiseizure medications should begin to return to pre-conception dosages in the first few days after the birth.

Discuss the benefits and risks of discontinuing antiseizure medication with the person with epilepsy, and their family and carers as appropriate, as part of an ongoing assessment of their treatment at any appointment or review. Provide information about the risks and benefits in an accessible format.

After a person has been seizure-free for 2 years, carry out an individualised assessment to determine the risk of seizure recurrence if antiseizure medications are discontinued. This should be carried out by an epilepsy specialist if there is any doubt or concern about the risks.

When deciding whether to discontinue antiseizure medications, discuss with the person with epilepsy, and their family or carers if appropriate:

• their individualised risk assessment, including their risk of seizures recurring and, if appropriate, the risk of SUDEP

• the person's preferences and lifestyle, including the implications for driving if relevant.

If a decision is made to discontinue antiseizure medication, agree a plan with the person, and their family or carers if appropriate, based on the person's risk and preferences. The plan should include reducing their antiseizure medications gradually:

• For most medicines, this would typically be over at least 3 months.

• For benzodiazepines and barbiturates, this would typically be over a longer period to reduce the risk of drug-related withdrawal symptoms.

For people with epilepsy taking multiple antiseizure medications, discontinue their medications one at a time.

If seizures recur during or after discontinuation, reverse the last dose reduction and seek guidance from the epilepsy specialist, in line with the agreed plan.

After epilepsy surgery, discontinue antiseizure medications under the guidance of the epilepsy surgery centre.