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Anti-epileptic drugs to offer based on epilepsy Anti-epileptic drugs to offer based on epilepsy syndrome syndrome NICE Pathways bring together everything NICE says on a topic in an interactive flowchart. NICE Pathways are interactive and designed to be used online. They are updated regularly as new NICE guidance is published. To view the latest version of this NICE Pathway see: http://pathways.nice.org.uk/pathways/epilepsy NICE Pathway last updated: 11 June 2020 This document contains a single flowchart and uses numbering to link the boxes to the associated recommendations. Epilepsy Epilepsy © NICE 2020. All rights reserved. Subject to Notice of rights . Page 1 of 26

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Page 1: Anti-epileptic drugs to offer based on epilepsy syndrome · Anti-epileptic drugs to offer based on epilepsy syndrome NICE Pathways bring together everything NICE says on a topic in

Anti-epileptic drugs to offer based on epilepsy Anti-epileptic drugs to offer based on epilepsy syndrome syndrome

NICE Pathways bring together everything NICE says on a topic in an interactive flowchart. NICE Pathways are interactive and designed to be used online.

They are updated regularly as new NICE guidance is published. To view the latest version of this NICE Pathway see:

http://pathways.nice.org.uk/pathways/epilepsy NICE Pathway last updated: 11 June 2020

This document contains a single flowchart and uses numbering to link the boxes to the associated recommendations.

EpilepsyEpilepsy© NICE 2020. All rights reserved. Subject to Notice of rights.

Page 1 of 26

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Anti-epileptic drugs to offer based on epilepsy syndrome Anti-epileptic drugs to offer based on epilepsy syndrome NICE Pathways

EpilepsyEpilepsy© NICE 2020. All rights reserved. Subject to Notice of rights.

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1 Person with epilepsy having pharmacological treatment

No additional information

2 Benign epilepsy with centrotemporal spikes, Panayiotopoulos syndrome or late-onset childhood occipital epilepsy (Gastaut type) in children and young people

First-line treatment

Discuss with the child or young person, and their family and/or carers, whether AED treatment

for benign epilepsy with centrotemporal spikes, Panayiotopoulos syndrome or late-onset

childhood occipital epilepsy (Gastaut type) is indicated.

Offer carbamazepine1 or lamotrigine as first-line treatment to children and young people with

benign epilepsy with centrotemporal spikes, Panayiotopoulos syndrome or late-onset childhood

occipital epilepsy (Gastaut type).

If carbamazepine or lamotrigine are unsuitable or not tolerated for benign epilepsy with

centrotemporal spikes, Panayiotopoulos syndrome or late-onset childhood occipital epilepsy

(Gastaut type):

Offer levetiracetam or oxcarbazepine to women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years). If the first of these AEDs tried is ineffective, offer the other one.

Do not offer sodium valproate to women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years) unless other options are ineffective or not tolerated and the pregnancy prevention programme is in place. Follow the MHRA safety advice on valproate use by women and girls.

Offer levetiracetam, oxcarbazepine or sodium valproate to boys, men and women who are not of childbearing potential. If the first AED tried is ineffective, offer an alternative from these AEDs.

Be aware that carbamazepine and oxcarbazepine may exacerbate or unmask continuous

spike and wave during slow sleep, which may occur in some children with benign epilepsy with centrotemporal spikes.

Levetiracetam is not cost effective at June 2011 unit costs2. It may be offered provided the

acquisition cost of levetiracetam falls to at least 50% of June 2011 value documented in the

National Health Service Drug Tariff for England and Wales.

Anti-epileptic drugs to offer based on epilepsy syndrome Anti-epileptic drugs to offer based on epilepsy syndrome NICE Pathways

EpilepsyEpilepsy© NICE 2020. All rights reserved. Subject to Notice of rights.

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1 At the time of publication (January 2012), this drug did not have UK marketing authorisation for this indication and/

or population (see the BNF or BNFC for details). Informed consent should be obtained and documented. 2 Estimated cost of a 1500 mg daily dose was £2.74 at June 2011. Cost taken from the National Health Service

Drug Tariff for England and Wales.

EpilepsyEpilepsy© NICE 2020. All rights reserved. Subject to Notice of rights.

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Consider adjunctive treatment if a second well-tolerated AED is ineffective.

Adjunctive treatment

If first-line treatments (see above) for children and young people with benign epilepsy with

centrotemporal spikes, Panayiotopoulos syndrome or late-onset childhood occipital epilepsy

(Gastaut type) are ineffective or not tolerated:

Offer carbamazepine, clobazam, gabapentin,1, lamotrigine, levetiracetam, oxcarbazepine or topiramate as adjunctive treatment to women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years).

Do not offer sodium valproate as adjunctive treatment to women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years) unless the other options are ineffective or not tolerated and the pregnancy prevention plan is in place. Follow the MHRA safety advice on valproate use by women and girls.

Offer carbamazepine, clobazam, gabapentin,, lamotrigine, levetiracetam, oxcarbazepine, sodium valproate or topiramate as adjunctive treatment to boys, men and women who are not of childbearing potential.

If adjunctive treatment is ineffective or not tolerated, discuss with, or refer to, a tertiary epilepsy

specialist. Other AEDs that may be considered by the tertiary epilepsy specialist are

eslicarbazepine acetate, lacosamide, phenobarbital, phenytoin, pregabalin,, tiagabine,

vigabatrin and zonisamide. Carefully consider the risk–benefit ratio when using vigabatrin

because of the risk of an irreversible effect on visual fields.

Continuing treatment

See continuing pharmacological treatment.

3 Childhood absence epilepsy, juvenile absence epilepsy or other absence epilepsy syndromes

First-line treatment

For first-line treatment of absence seizures:

Offer ethosuximide to women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years), unless it is unsuitable.

Do not offer sodium valproate to women and girls of childbearing potential unless other options are ineffective or not tolerated and the pregnancy prevention programme is in place.

Anti-epileptic drugs to offer based on epilepsy syndrome Anti-epileptic drugs to offer based on epilepsy syndrome NICE Pathways

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1 As of 1 April 2019, gabapentin and pregabalin are Class C controlled substances (under the Misuse of Drugs Act 1971) and scheduled under the Misuse of Drugs Regulations 2001 as Schedule 3. Evaluate patients carefully for a history of drug abuse before prescribing and observe patients for development of signs of abuse and dependence (MHRA, Drug Safety Update April 2019).

EpilepsyEpilepsy© NICE 2020. All rights reserved. Subject to Notice of rights.

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Follow the MHRA safety advice on valproate use by women and girls.

Offer ethosuximide or sodium valproate to boys, men and women who are not of childbearing potential. If there is a high risk of GTC seizures, offer sodium valproate first, unless it is unsuitable.

Adjunctive treatment

If two first-line AEDs for children, young people and adults with absence epilepsy syndromes

are ineffective:

Consider a combination of ethosuximide and lamotrigine1 as adjunctive treatment for women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years).

Do not offer sodium valproate to women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years) unless other options are ineffective or not tolerated and the pregnancy prevention programme is in place. Follow the MHRA safety advice on valproate use by women and girls.

Consider a combination of two of these three AEDs as adjunctive treatment for boys, men and women who are not of childbearing potential: ethosuximide, lamotrigine or sodium valproate.

If adjunctive treatment is ineffective or not tolerated, discuss with, or refer to, a tertiary epilepsy

specialist and consider clobazam, clonazepam, levetiracetam, topiramate or zonisamide.

Do not offer carbamazepine, gabapentin2, oxcarbazepine, phenytoin, pregabalin, tiagabine or

vigabatrin.

Continuing treatment

See continuing pharmacological treatment.

4 Dravet syndrome

Discuss with, or refer to, a tertiary paediatric epilepsy specialist when a child presents with

suspected Dravet syndrome.

First-line treatment

For first-line treatment of Dravet syndrome:

Consider topiramate for women and girls of childbearing potential (including young girls

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1 At the time of publication (January 2012), this drug did not have UK marketing authorisation for this indication and/or population (see the BNF or BNFC for details). Informed consent should be obtained and documented. 2 As of 1 April 2019, gabapentin and pregabalin are Class C controlled substances (under the Misuse of Drugs Act

1971) and scheduled under the Misuse of Drugs Regulations 2001 as Schedule 3. Evaluate patients carefully for a

history of drug abuse before prescribing and observe patients for development of signs of abuse and dependence

(MHRA, Drug Safety Update April 2019).

EpilepsyEpilepsy© NICE 2020. All rights reserved. Subject to Notice of rights.

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who are likely to need treatment into their childbearing years).

Consider sodium valproate or topiramate1 for boys, men and women who are not of childbearing potential.

Do not offer sodium valproate as first-line treatment to women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years), unless other options are ineffective or not tolerated and the pregnancy prevention programme is in place. Follow the MHRA safety advice on valproate use by women and girls .

Adjunctive treatment in children, young people and adults

Discuss with a tertiary epilepsy specialist if first-line treatments in children, young people and

adults with Dravet syndrome are ineffective or not tolerated, and consider clobazam or

stiripentol as adjunctive treatment.

Do not offer carbamazepine, gabapentin2, lamotrigine, oxcarbazepine, phenytoin, pregabalin,

tiagabine or vigabatrin.

Cannabidiol with clobazam

The following recommendations are from NICE technology appraisal guidance on cannabidiol

with clobazam for treating seizures associated with Dravet syndrome.

Cannabidiol with clobazam is recommended as an option for treating seizures associated with

Dravet syndrome in people aged 2 years and older, only if:

the frequency of convulsive seizures is checked every 6 months, and cannabidiol is stopped if the frequency has not fallen by at least 30% compared with the 6 months before starting treatment

the company provides cannabidiol according to the commercial arrangement.

This recommendation is not intended to affect treatment with cannabidiol, with clobazam, that

was started in the NHS before this guidance was published. People having treatment outside

this recommendation may continue without change to the funding arrangements in place before

this guidance was published, until they and their NHS clinicians consider it appropriate to stop.

For children and young people, this decision should be made jointly by the clinician and the

child or young person, or the child or young person's parents or carers.

See why we made the recommendations on cannabidiol with clobazam for Dravet syndrome.

NICE has published information for the public on cannabidiol with clobazam for Dravet

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1 At the time of publication (January 2012), this drug did not have UK marketing authorisation for this indication and/or population (see the BNF or BNFC for details). Informed consent should be obtained and documented. 2 As of 1 April 2019, gabapentin and pregabalin are Class C controlled substances (under the Misuse of Drugs Act

1971) and scheduled under the Misuse of Drugs Regulations 2001 as Schedule 3. Evaluate patients carefully for a

history of drug abuse before prescribing and observe patients for development of signs of abuse and dependence

(MHRA, Drug Safety Update April 2019).

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syndrome.

Continuing treatment

See continuing pharmacological treatment.

5 Epilepsy with generalised tonic–clonic seizures only

First-line treatment

For first-line treatment of GTC seizures only:

Offer lamotrigine to women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years), but be aware of the risk of exacerbating myoclonic or absence seizures.

Do not offer sodium valproate to women and girls of childbearing potential unless other options are ineffective or not tolerated and the pregnancy prevention programme is in place. Follow the MHRA safety advice on valproate use by women and girls.

Offer lamotrigine or sodium valproate to boys, men and women who are not of childbearing potential. If they have suspected myoclonic seizures, or are suspected of having JME, offer sodium valproate first, unless it is unsuitable.

Consider carbamazepine and oxcarbazepine1 but be aware of the risk of exacerbating

myoclonic or absence seizures.

Adjunctive treatment

If first-line treatments for children, young people and adults with GTC seizures only are

ineffective or not tolerated:

Offer clobazam, lamotrigine or levetiracetam as adjunctive treatment to women and girls of

childbearing potential (including young girls who are likely to need treatment into their

childbearing years).

Do not offer sodium valproate as adjunctive treatment to women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years) unless other options are ineffective or not tolerated and the pregnancy prevention programme is in place. Follow the MHRA safety advice on valproate use by women and girls.

Offer clobazam, lamotrigine, levetiracetam, sodium valproate or topiramate as adjunctive

treatment to to boys, men and women who are not of childbearing potential.

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1 At the time of publication (January 2012), this drug did not have UK marketing authorisation for this indication and/

or population (see the BNF or BNFC for details). Informed consent should be obtained and documented.

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Continuing treatment

See continuing pharmacological treatment.

6 Idiopathic generalised epilepsy

First-line treatment

For first-line treatment of newly diagnosed IGE:

Do not offer sodium valproate to women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years) unless other options are ineffective or not tolerated and the pregnancy prevention programme is in place. Follow the MHRA safety advice on valproate use by women and girls.

Offer sodium valproate to boys, men and women who are not of childbearing potential, particularly if there is a photoparoxysmal response on EEG.

Offer lamotrigine1 if sodium valproate is unsuitable or not tolerated. Be aware that lamotrigine

can exacerbate myoclonic seizures. If JME is suspected see juvenile myoclonic epilepsy [See

page 15].

Consider topiramate but be aware that it has a less favourable side-effect profile than

lamotrigine.

Adjunctive treatment

If first-line treatments for children, young people and adults with IGE are ineffective or not

tolerated:

Offer lamotrigine, levetiracetamor topiramate as adjunctive treatment to women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years).

Do not offer sodium valproate to women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years) unless other options are unsuitable, ineffective or not tolerated and the pregnancy prevention programme is in place. Follow the MHRA safety advice on valproate use by women and girls.

Offer lamotrigine, levetiracetam, sodium valproate or topiramate as adjunctive treatment to boys, men and women who are not of childbearing potential.

If adjunctive treatment is ineffective or not tolerated, discuss with, or refer to, a tertiary epilepsy

specialist and consider clobazam, clonazepam or zonisamide.

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1 At the time of publication (January 2012), this drug did not have UK marketing authorisation for this indication and/

or population (see the BNF or BNFC for details). Informed consent should be obtained and documented.

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Do not offer carbamazepine, gabapentin1, oxcarbazepine, phenytoin, pregabalin, tiagabine or

vigabatrin.

Continuing treatment

See continuing pharmacological treatment.

7 Infantile spasms

Discuss with, or refer to, a tertiary paediatric epilepsy specialist when an infant presents with

infantile spasms.

Offer a steroid (prednisolone or tetracosactide2) or vigabatrin as first-line treatment to infants

with infantile spasms that are not due to tuberous sclerosis. Carefully consider the risk–benefit

ratio when using vigabatrin or steroids.

Offer vigabatrin as first-line treatment to infants with infantile spasms due to tuberous sclerosis.

If vigabatrin is ineffective, offer a steroid (prednisolone or tetracosactide). Carefully consider the

risk–benefit ratio when using vigabatrin or steroids.

Continuing treatment

See continuing pharmacological treatment.

8 Juvenile myoclonic epilepsy

First-line treatment

For first-line treatment of JME:

Do not offer sodium valproate to women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years) unless other options are ineffective or not tolerated and the pregnancy prevention programme is in place. Follow the MHRA safety advice on valproate use by women and girls.

Offer sodium valproate to boys, men and women who are not of childbearing potential.

Consider lamotrigine3, levetiracetam or topiramate if sodium valproate is unsuitable, ineffective

or not tolerated. Be aware that topiramate has a less favourable side-effect profile than

lamotrigine, levetiracetam and sodium valproate, and that lamotrigine may exacerbate

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1 As of 1 April 2019, gabapentin and pregabalin are Class C controlled substances (under the Misuse of Drugs Act

1971) and scheduled under the Misuse of Drugs Regulations 2001 as Schedule 3. Evaluate patients carefully for a

history of drug abuse before prescribing and observe patients for development of signs of abuse and dependence

(MHRA, Drug Safety Update April 2019). 2 At the time of publication (January 2012), this drug did not have UK marketing authorisation for this indication and/

or population (see the BNFC for details). Informed consent should be obtained and documented. 3 At the time of publication (January 2012), this drug did not have UK marketing authorisation for this indication and/

or population (see the BNF or BNFC for details). Informed consent should be obtained and documented.

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myoclonic seizures.

Adjunctive treatment

If first-line treatments for children, young people and adults with JME are ineffective or not

tolerated:

Offer lamotrigine, levetiracetam or topiramate as adjunctive treatment to women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years).

Do not offer sodium valproate to women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years) unless the other options are unsuitable, ineffective or not tolerated and the pregnancy prevention programme is in place. Follow the MHRA safety advice on valproate use by women and girls.

Offer lamotrigine, levetiracetam, sodium valproate or topiramate as adjunctive treatment to boys, men and women who are not of childbearing potential.

If adjunctive treatment is ineffective or not tolerated, discuss with, or refer to, a tertiary epilepsy

specialist (see when to refer to a tertiary epilepsy service) and consider clobazam, clonazepam

or zonisamide.

Do not offer carbamazepine, gabapentin1, oxcarbazepine, phenytoin, pregabalin, tiagabine or

vigabatrin.

Continuing treatment

See continuing pharmacological treatment.

.. (3) [Epilepsy / Pharmacological treatment of epilepsy / Continuing pharmacological treatment]]

9 Lennox–Gastaut syndrome

First-line treatment

Discuss with, or refer to, a tertiary paediatric epilepsy specialist when a child presents with

suspected Lennox–Gastaut syndrome.

For first-line treatment of Lennox–Gastaut syndrome:

Do not offer sodium valproate to women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years), unless other options are

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1 As of 1 April 2019, gabapentin and pregabalin are Class C controlled substances (under the Misuse of Drugs Act

1971) and scheduled under the Misuse of Drugs Regulations 2001 as Schedule 3. Evaluate patients carefully for a

history of drug abuse before prescribing and observe patients for development of signs of abuse and dependence

(MHRA, Drug Safety Update April 2019).

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ineffective or not tolerated and the pregnancy prevention programme is in place. Follow the MHRA safety advice on valproate use by women and girls.

Offer sodium valproate to boys, men and women who are not of childbearing potential.

Adjunctive treatment in children, young people and adults

If first-line treatment with sodium valproate is ineffective or not tolerated, offer lamotrigine as

adjunctive treatment to children, young people and adults with Lennox–Gastaut syndrome.

Discuss with a tertiary epilepsy specialist if adjunctive treatment is ineffective or not tolerated.

Other AEDs that may be considered by the tertiary epilepsy specialist are rufinamide and

topiramate.

Only offer felbamate1 in centres providing tertiary epilepsy specialist care and when treatment

with all of the AEDs listed above has proved ineffective or not tolerated.

Do not offer carbamazepine, gabapentin2, oxcarbazepine, pregabalin, tiagabine or vigabatrin.

Cannabidiol with clobazam

The following recommendations are from NICE technology appraisal guidance on cannabidiol

with clobazam for treating seizures associated with Lennox–Gastaut syndrome.

Cannabidiol with clobazam is recommended as an option for treating seizures associated with

Lennox–Gastaut syndrome in people aged 2 years and older, only if:

the frequency of drop seizures is checked every 6 months, and cannabidiol is stopped if the frequency has not fallen by at least 30% compared with the 6 months before starting treatment

the company provides cannabidiol according to the commercial arrangement.

This recommendation is not intended to affect treatment with cannabidiol, with clobazam, that

was started in the NHS before this guidance was published. People having treatment outside

this recommendation may continue without change to the funding arrangements in place before

this guidance was published, until they and their NHS clinicians consider it appropriate to stop.

For children and young people, this decision should be made jointly by the clinician and the

child or young person, or the child or young person's parents or carers.

See why we made the recommendations on cannabidiol with clobazam for Lennox-Gastaut

syndrome.

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NICE has published information for the public on cannabidiol with clobazam for Lennox–Gastaut

syndrome.

Continuing treatment

See continuing pharmacological treatment.

10 Other epilepsy syndromes

Refer to a tertiary paediatric epilepsy specialist all children and young people with continuous

spike and wave during slow sleep, Landau–Kleffner syndrome or myoclonic-astatic epilepsy.

Continuing treatment

See continuing pharmacological treatment.

Anti-epileptic drugs to offer based on epilepsy syndrome Anti-epileptic drugs to offer based on epilepsy syndrome NICE Pathways

1 At the time of publication (January 2012), this drug did not have UK marketing authorisation for this indication and/

or population (see the BNF or BNFC for details). Informed consent should be obtained and documented. 2 As of 1 April 2019, gabapentin and pregabalin are Class C controlled substances (under the Misuse of Drugs Act

1971) and scheduled under the Misuse of Drugs Regulations 2001 as Schedule 3. Evaluate patients carefully for a

history of drug abuse before prescribing and observe patients for development of signs of abuse and dependence

(MHRA, Drug Safety Update April 2019).

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Glossary

Absence seizures

(seizures characterised by behavioural arrest associated with generalised spike wave activity on

EEG)

Adjunctive treatment

(where a medication is added to a first-line anti-epileptic drug for combination therapy)

AED

(anti-epileptic drug: medication taken daily to prevent the recurrence of epileptic seizures)

AEDs

(anti-epileptic drugs: medication taken daily to prevent the recurrence of epileptic seizures)

Benign epilepsy with centrotemporal spikes

(an epilepsy syndrome of childhood (5–14 years) characterised by focal motor and/or

secondarily generalised seizures, the majority from sleep, in an otherwise normal individual,

with centrotemporal spikes seen on EEG)

Continuous spike and wave during slow sleep

(an epilepsy syndrome with childhood onset, characterised by a plateau and regression of

cognitive abilities associated with dramatic increase in spike wave activity in slow wave sleep (>

85% of slow sleep); there may be few seizures at presentation)

Dravet syndrome

(previously known as severe myoclonic epilepsy of infancy: an epilepsy syndrome with onset in

infancy, characterised by initial prolonged, typically lateralised, febrile seizures, subsequent

development of multiple seizure types including myoclonic, absence, focal and generalised

tonic–clonic seizures, with developmental plateau or regression)

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EEG

(electroencephalogram: an investigation that involves recording the electrical activity of the

brain)

GTC seizures

(a seizure of sudden onset involving generalised stiffening and subsequent rhythmic jerking of

the limbs, the result of rapid widespread engagement of bilateral cortical and subcortical

networks in the brain)

IGE

(idiopathic generalised epilepsy (a well-defined group of disorders characterised by typical

absences, myoclonic and generalised tonic–clonic seizures, alone or in varying combinations in

otherwise normal individuals))

Infantile spasms

(a specific seizure type presenting in the first year of life, most commonly between 3 and 9

months; spasms are brief axial movements lasting 0.2–2 seconds, most commonly flexor in

nature, involving flexion of the trunk with extension of the upper and lower limbs (sometimes

referred to as 'salaam seizures'))

JME

(juvenile myoclonic epilepsy; an epilepsy syndrome with an age of onset of 5–20+ years (peak

10–16 years) characterised by myoclonic seizures that most commonly occur soon after

waking)

Landau–Kleffner syndrome

(a very rare epilepsy syndrome with an age of onset of 3–6 years characterised by loss of

language (after a period of normal language development) associated with an epilepsy of

centrotemporal origin, more specifically bitemporal spikes on EEG with enhancement in sleep or

continuous spike and wave during slow sleep)

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Late-onset childhood occipital epilepsy (Gastaut type)

(epilepsy that starts in mid-childhood to adolescence with frequent brief seizures characterised

by initial visual hallucinations, ictal blindness, vomiting and post-ictal headache; EEG typically

shows interictal occipital spikes attenuated by eye opening)

Myoclonic-astatic epilepsy

(an epilepsy syndrome with an age of onset of 18–60 months, characterised by different seizure

types with myoclonic and myoclonic-astatic seizures seen in all, causing children to fall; the

EEG shows generalised spike/polyspike and wave activity at 2–6 Hz (also known as Doose

syndrome))

Myoclonic seizures

(sudden brief (<100 ms) and almost shock-like involuntary single or multiple jerks due to

abnormal excessive or synchronous neuronal activity and associated with polyspikes on EEG)

Panayiotopoulos syndrome

(epilepsy syndrome presenting in early childhood (mean 4–7 years) with rare, prolonged

seizures; characterised by autonomic features including vomiting, pallor and sweating followed

by tonic eye deviation, impairment of consciousness with possible evolution into secondary

generalisation; prognosis is excellent and treatment often unnecessary)

Tertiary epilepsy specialist

(an adult neurologist who devotes the majority of their working time to epilepsy, works in a

multidisciplinary tertiary referral centre with appropriate diagnostic and therapeutic resources,

and is subject to regular peer review)

Tertiary paediatric epilepsy specialist

(a paediatric neurologist who devotes the majority of their working time to epilepsy, works in a

multidisciplinary tertiary referral centre with appropriate diagnostic and therapeutic resources,

and is subject to regular peer review)

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Sources

Epilepsies: diagnosis and management (2012 updated 2020) NICE guideline CG137

Cannabidiol with clobazam for treating seizures associated with Lennox–Gastaut syndrome

(2019) NICE technology appraisal guidance 615

Cannabidiol with clobazam for treating seizures associated with Dravet syndrome (2019) NICE

technology appraisal guidance 614

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful

consideration of the evidence available. When exercising their judgement, professionals and

practitioners are expected to take this guideline fully into account, alongside the individual

needs, preferences and values of their patients or the people using their service. It is not

mandatory to apply the recommendations, and the guideline does not override the responsibility

to make decisions appropriate to the circumstances of the individual, in consultation with them

and their families and carers or guardian.

Local commissioners and providers of healthcare have a responsibility to enable the guideline

to be applied when individual professionals and people using services wish to use it. They

should do so in the context of local and national priorities for funding and developing services,

and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to

advance equality of opportunity and to reduce health inequalities. Nothing in this guideline

should be interpreted in a way that would be inconsistent with complying with those duties.

Commissioners and providers have a responsibility to promote an environmentally sustainable

health and care system and should assess and reduce the environmental impact of

implementing NICE recommendations wherever possible.

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Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after

careful consideration of the evidence available. When exercising their judgement, health

professionals are expected to take these recommendations fully into account, alongside the

individual needs, preferences and values of their patients. The application of the

recommendations in this interactive flowchart is at the discretion of health professionals and

their individual patients and do not override the responsibility of healthcare professionals to

make decisions appropriate to the circumstances of the individual patient, in consultation with

the patient and/or their carer or guardian.

Commissioners and/or providers have a responsibility to provide the funding required to enable

the recommendations to be applied when individual health professionals and their patients wish

to use it, in accordance with the NHS Constitution. They should do so in light of their duties to

have due regard to the need to eliminate unlawful discrimination, to advance equality of

opportunity and to reduce health inequalities.

Commissioners and providers have a responsibility to promote an environmentally sustainable

health and care system and should assess and reduce the environmental impact of

implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after

careful consideration of the evidence available. When exercising their judgement, healthcare

professionals are expected to take these recommendations fully into account. However, the

interactive flowchart does not override the individual responsibility of healthcare professionals to

make decisions appropriate to the circumstances of the individual patient, in consultation with

the patient and/or guardian or carer.

Commissioners and/or providers have a responsibility to implement the recommendations, in

their local context, in light of their duties to have due regard to the need to eliminate unlawful

discrimination, advance equality of opportunity, and foster good relations. Nothing in this

interactive flowchart should be interpreted in a way that would be inconsistent with compliance

with those duties.

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Commissioners and providers have a responsibility to promote an environmentally sustainable

health and care system and should assess and reduce the environmental impact of

implementing NICE recommendations wherever possible.

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