epilepsy.org.ukEpilepsy Helpline: 0808 800 5050

Children with epilepsy

Children with epilepsy2

Epilepsy Action aims to improve the quality of life and promote the interests of people living with epilepsy.

Our work... • Weprovideinformationtoanyonewithaninterestinepilepsy.• Weimprovetheunderstandingofepilepsyinschoolsand

raise educational standards.• Weworktogivepeoplewithepilepsyafairchanceoffinding

and keeping a job.• Weraisestandardsofcarethroughcontactwithdoctors,

nurses,socialworkers,governmentandotherorganisations.• Wepromoteequalityofaccesstoqualitycare.

Epilepsy Action has local branches in most parts of the UK. Each branch offers support to local people and raises money to help ensure our work can continue.

Your supportWehopeyoufindthisbooklethelpful.Asacharity,werelyondonations to provide our advice and information. If you would liketomakeadonation,herearesomewaysyoucandothis.

• Visitepilepsy.org.uk/donate• TextACTNOWto70700(Thiswillcostyou£5plusyour

usualcostofsendingatext.EpilepsyActionwillreceive£5.)• SendachequepayabletoEpilepsyAction.

Did you know you can also become a member of Epilepsy Actionfromlessthan£1amonth?Tofindoutmore,visit epilepsy.org.uk/joinorcall01132108800.

Children with epilepsy 3

ContentsIntroduction 4

About epilepsy 4

About seizures 5

Seizureclassifications 5

Focal(partial)seizures 7

Generalised seizures 8

Febrileseizures 11

Epilepsysyndromes 11

Seizuresatdifferentages 12

Diagnosingepilepsy 12

Treatingepilepsy 14

NICEandmovingtoadultservices 16

Risksofhavingepilepsy 17

Epilepsyandbehaviour 17

Learningandeducation 19

Unfairtreatmentandthelaw 20

Localservices 21

Helpandsupportforparentsandcarers 21

Furtherinformation 23

Firstaidforseizures 26

Children with epilepsy4

IntroductionAroundonein240childrenunder16intheUKhasepilepsy.Withafewsensibleprecautions,mostwillbeabletodothethingsotherchildrencando.However,somechildrenhave morecomplexepilepsyandneedspecialisthelpandsupport.Thisinformationwilltellyouaboutsomeoftheissuesthataffectchildrenwithepilepsy,andwhereyoucangoforanyhelpor support you need.

Epilepsy Action has more information about all the issues discussed.

About epilepsyTherearemanytypesofepilepsy.Ifyourchildhasepilepsy,itmeanstheyhaveatendencytohaveseizures(sometimescalledfits).Epilepsycanbeginatanyage.

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About seizuresElectrical activity is happening in our brain all the time. A seizure happens when there is a sudden burst of intense electricalactivity.Thisintenseelectricalactivitycausesatemporarydisruptiontothewaythebrainnormallyworks,meaningthatthebrain’smessagesgetmuddled.Theresultisanepileptic seizure.

Your child’s brain is responsible for all the functions of their body.Whathappenstothemduringaseizurewilldependonwhereintheirbraintheseizurebegins,andhowwidelyandrapidlyitspreads.Forthisreason,therearemanydifferenttypesofseizureandeachchildwillexperienceepilepsyinawaythatisunique to them.

Seizure classificationsTherearemanydifferenttypesofseizure.Theycanbeclassedbywhereinthebraintheepilepticactivitystarts.TheInternationalLeagueAgainstEpilepsy,aworld-wideorganisationofepilepsyprofessionals,hascompiledalistofthenamesofdifferentseizuretypes.Thenamesgiventodifferenttypesofseizures in this information are based on this list.

Givingseizurestherightnamesisimportantfordoctors,becausespecificdrugsandtreatmentscanhelpsomeseizuretypes but not others.

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Children with epilepsy 7

Focal (partial) seizuresIntheseseizures,theepilepticactivitystartsinjustapartofachild’sbrain.Theymaystayalertduringthistypeofseizure,ortheymaynotbeawareofwhatishappening.Theymayhaveunusualsensationsorfeelings.Thesearesomeexamples.

• Flushing,sweating,goingverypale,havingachurningfeelingintheir stomach

• Seeingthingsassmallerorbiggerthantheyreallyare• Seeingorhearingsomethingthatisnotactuallyhappening• Smellingnon-existentsmells• Tastingnon-existenttastes• Feelingfrightened,panicky,sadorhappy• Feeling detached from what is going on around them• Feeling sick• Having movements they can’t control• Chewing,smackingtheirlips,swallowingorscratchingtheir

head• Fumbling with their buttons or taking their clothes off• Having problems speaking or understanding• Wanderingoff,withoutanyawarenessofwhattheyaredoing,

or where they are going

Focalseizurescanbeverybrieforlastforminutes.Sometimes,focalseizuresareawarningthatyouaregoingtohaveatonic-clonicseizure.Thisiscalledanaura.

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Generalised seizuresTheseseizuresinvolveepilepticactivityinbothhemispheres(halves)ofachild’sbrain.Theywillusuallyloseconsciousnessbutthismaybesobriefthatno-onenotices.Theirmusclesmaystiffenand/orjerk.Theymayfalldown.

Tonic-clonic seizures

Thisisthemostcommonandwidelyrecognisedgeneralisedseizure.Therearetwophasestothistypeofseizure:the‘tonic’phase,followedbythe‘clonic’phase.

The tonic phaseThechildlosesconsciousnessand,ifstanding,willfalltothefloor.Theirbodygoesstiffbecausealltheirmusclescontract.Theymayalsocryoutbecausetheirmusclescontract,forcingairoutoftheirlungs.Theirbreathingpatternschange,sothereislessoxygenthannormalintheirlungs.Becauseofthis,thebloodcirculatingintheirbodyislessredthanusual.Thiscausestheirskin(particularlyaroundtheirmouthandundertheirfingernails)toappearblueincolour(called‘cyanosis’).Theymaybite their tongue and the inside of their cheeks.

The clonic phaseAfterthetonicphasehaspassed,theclonicphaseoftheseizurebegins.Thechild’slimbsjerknowbecausetheirmusclestightenandrelaxinturn.Theymayoccasionallylosecontroloftheirbladderand/orbowels.Itisnotpossibletostoptheseizure,and

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youshouldnottrytocontroltheirmovements,asthiscouldcause injury to their limbs.

Afteratonic-clonicseizure,somepeoplemaybeveryconfused,tired,orhavememoryloss.Thisisknownasapost-ictalstate,and can last from minutes to days.

Absence seizures

Duringanabsenceseizure,achildisverybrieflyunconscious.Theyappeartobedaydreamingorswitchingoff.Theydon’tknowwhatishappeningaroundthem,andtheycan’tbebroughtoutofit.Becauseanybodycandaydreamatanytime,absencescanbeveryhardtospot.Somechildrenhavehundredsofabsenceseizuresaday,stoppingthemfromfullytakingpartindailyactivities.Theycouldalsomisstinypiecesofinformationorevents.Thismaybemistakenforlackofattentionorconcentration.

Myoclonic seizures

Thewordmyocloniccomesfrom‘myo’meaningmuscle,and‘clonus’meaningjerk.So,ifachildhasamyoclonicseizure,theirmusclesjerk.Theseseizurescansometimescausetheirwholebodytojerk.Moreusually,theyonlycausejerkinginoneorboth of the child’s arms and sometimes their head. Although it maynotbeobvious,duringtheseizure,theyareunconsciousforaverybrieftime.Eventhoughtheseizuresarebrief,theycanbeextremelyfrustrating.Forexample,ifachildisholdingadrinkwhentheyhaveamyoclonicseizure,theyarelikelytospillit.

Children with epilepsy10

Tonic seizures

Inatonicseizure,allthechild’smusclestighten.Theirbodystiffensandtheyfalloverunlesstheyaresupported.Tonicseizuresusuallylastlessthan20secondsandmostoftenhappenduring sleep.

Atonic seizures (drop attacks or akinetic seizures)

Inanatonicseizure,achildlosesallmuscletoneanddropsheavilytothefloor.Theseizureisverybriefandtheyareusuallyabletogetupagainstraightaway.Theyarenotconfusedafterwards.Becausetheyusuallyfallforwardinanatonicseizure,they are at risk of banging their head on furniture or other hard objects.Ifyourchildhasfrequentatonicseizures,extrasafetyprecautions – like protective headgear – make sense. Epilepsy Action can provide further information on this.

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Febrile seizuresFebrile seizures happen to around three out of every hundred childrenundertheageoffive.Theyareusuallylinkedtoachildhoodillnesssuchastonsillitis,orteething.Febrileseizuresarenotepilepsy.However,childrenwhohavehadfebrileseizureshave a slightly higher chance of developing epilepsy later on than children in general.

Epilepsy syndromesSomechildrenhaveepilepsyaspartofasyndrome.Asyndromeisagroupofsignsandsymptomsthat,addedtogether,suggestaparticularmedicalcondition.Inepilepsy,examplesofthesesignsand symptoms would be things like the age at which seizures begin,thetypeofseizures,whetherthechildismaleorfemaleandwhethertheyhavedifficultieswithlearning.

Ifachildisdiagnosedwithaparticularsyndrome,itallowsdoctors to provide more information about what is most likely tohappentotheminfutureyears.Thisisnotonlyfromthepointofviewoftheepilepsy,butalsoinrelationtootherfeatures such as learning skills.

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Seizures at different agesChildrencanhavedifferenttypesofseizures,atdifferentages.Inbabies,seizuresmaynotbeobvioustoanonlooker.Theirseizuresmayshowaschangesinbreathingpatterns,ormovementsoftheireyelidsorlips.Theymayhavebicyclingmovementsoftheirlegs,briefjerksorepisodesofstiffeningoftheirbodyandlimbs.Astheirbrainmatures,olderchildrenhaveseizuresthataremoreeasilyrecognised,suchastonic-clonicseizures.Somebabiesandchildrencanhaveseveraldifferenttypes of seizures.

Diagnosing epilepsyIfyourchildhashadaseizure,theywillusuallybeseenbyapaediatrician(children’sdoctor).Tohelpdecidewhetheryourchildhasepilepsy,thisdoctorwillaskwhatyourchildexperiencedbefore,duringandaftertheseizure.Theymightaskwhether you have taken a video recording of your child’s seizure forthemtolookat.Theywilllookattheirmedicalhistory,andmay arrange for them to have some of the following tests.

Electroencephalogram (EEG)

TheEEGtellsdoctorsabouttheelectricalactivityinthebrain.DuringtheEEG,atechnicianplacesharmlesselectrodesonthescalp,usingaspecialglueorstickytape.ThentheelectrodesareconnectedtotheEEGmachine,whichrecordstheelectricalsignals in the brain on a computer.

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Computed tomography (CT scan)

ThisisatypeofX-ray.Itshowsthestructureofthebrain.Itdoesn’tshowifyourchildhasepilepsy.However,itmightshowan abnormality that could cause epilepsy.

Magnetic resonance imaging (MRI scan)

TheMRIusesradiowavesandamagneticfield,ratherthanX-rays.Itcanshowifthere’sastructuralcauseforsomeone’sepilepsy.TheMRIismorepowerfulthantheCTscanner,soitcanpickupsmallorsubtleabnormalitiesthattheCTscannercan’tfind. 

NotallchildrenwithepilepsywillneedaCTorMRIscan.

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Treating epilepsyEpilepsy medicines

Most children with epilepsy are prescribed epilepsy medicines. Theaimoftreatingseizureswithepilepsymedicinesistocontrolyourchild’sseizures,sothattheycangetonwiththeirlife.Therearemanydifferentepilepsymedicinesavailableandyour child’s epilepsy specialist will recommend the best one for yourchild.Theywillmaketheirchoicebylookingatyourchild’stypeofseizures,anyothermedicalconditionstheyhave,andyour and your child’s preferences.

Itmaytakeawhiletofindtherightdoseoftherightmedicineforyourchild.Butonceitisfound,theyhaveaverygoodchanceofbeingseizurefree.Infact,aroundsevenin10childrenwithepilepsycanbecomeseizurefree.Oncetheirseizuresarecontrolled,theywillstillusuallyneedtotakeepilepsymedicineforawhile.Sometimes,theymayneedtotakeitformanyyears.

Review

Your child should have a review of their epilepsy and treatment withtheirepilepsyspecialistatleastonceayear.Thisistomakesure that they are still on the right dose of the right medicine for their epilepsy. It is also to make sure they are not having any side-effectsfromtheirepilepsymedicine.

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Epilepsy surgery

Somechildrenhaveseizuresthatarenotcontrolledbyepilepsymedicines.Thesechildrenmaybesuitableforepilepsybrainsurgery.Theaimofepilepsybrainsurgeryistocontrol,orreduce,thenumber of seizures a child has and to improve their quality of life.

Diet

Generally,thereisnospecificdietforpeoplewithepilepsytofollow.However,somechildrenwithepilepsycanbenefitfromfollowing the ketogenic diet.

Theketogenicdietisahighfatdietthatcanhelptotreatseizuresinchildrenwithdifficulttocontrolepilepsy.Onestudyof children with epilepsy who had been on the ketogenic diet for around10years,foundthataroundsevenoutof10hadfewerseizures than before.

Triggers

Ifyourchildisoldenough,theymightbeabletorecognisethingsthatmaketheirseizuresmorelikely.Thesearecalledtriggers.Tiredness,lackofsleepandstressaresomeofthemorecommon triggers in children. A very small number of children with epilepsy have their seizures triggered by flashing or flickeringlights.Thisisphotosensitiveepilepsy.

Somechildrensaythattheycanavoidseizuresbyavoidingtheirtriggers.Butnotallchildrenhavethingsthattriggertheirseizures.

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NICE and moving to adult servicesNICE(NationalInstituteforHealthandCareExcellence)istheindependent organisation responsible for providing national guidelinesontreatmentandcareforpeopleusingtheNHSinEngland,NorthernIrelandandWales.

Atsomepointduringtheirteenageyears,childrenwithepilepsywill be transferred from children’s services to adult services. Thiscanbeabigchange,andNICErecommendsthatthisisdone through a transition clinic.

Sometransitionclinicsarejointlyrunbyadultandpaediatric(children’s)specialists,whowillreviewyourchild’sepilepsyandtreatment.Theyshouldgiveyourchildanyepilepsyinformationtheyneed,anddetailsofsupportgroupsthatmightbeabletohelp them.

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Risks of having epilepsyChildrenwithepilepsyareatriskofseizurerelatedinjuries.Childrenwhohaveepilepsybecauseofanothercondition,orhave only recently been diagnosed with epilepsy are at highest risk.Thisisbecausetheyaremorelikelytobehavingseizuresthan other children.

Everyyear,around40to80childrenintheUKdiebecauseoftheirepilepsy.Forexample,achildcouldhaveaseizureinadangerousplace.Ortheseizureitselfmaybethecauseofdeath.Butthereasonsforthesedeathsarenotalwaysknown.Whereachildwithepilepsyhasdiedsuddenly,andnoreasoncanbefound,itiscalledsuddenunexpecteddeathinepilepsy(SUDEP).

Knowing about the risks means you can do things to keep the risks to a minimum. It’s a good idea to talk to your child’s doctor or epilepsy nurse about this.

Epilepsy and behaviourBehaviourproblemsarecommoninchildren.Thisistruewhetherornottheyhaveepilepsy.However,somechildrenhavebehaviour problems that are related to their epilepsy or epilepsy medicine.Ifyouareconcernedaboutyourchild’sbehaviour,speaktotheirepilepsydoctor,epilepsynurse,orhealthvisitor,to see if they can help.

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Children with epilepsy 19

Learning and education Many children and young people with epilepsy go to mainstream schools.Andsomedoverywell.However,somechildrenwithepilepsydon’tachieveasmuchastheycould.Thismayormaynot be related to their epilepsy or epilepsy medicine. If you believeyourchildisnotdoingaswellastheycould,speaktotheirteacherorspecialeducationalneedsco-ordinator(SENCO).Theywillbeabletoassessyourchildtotrytofindwaystohelpthem.Iftheystillhavedifficulties,youcanaskforthemtobeassessedforspecialeducationalneeds(SEN).

Special educational needs

IfachildhasSEN,itmeanstheyneedsomeextrahelporsupporttoreachtheirfullpotential.TherearethreedifferentSENsupportframeworksforchildrenintheUK,dependingonwhereyoulive.EachoftheseframeworkswillexplainaboutSENinthatparticularcountry,andwilltellyouwhatyoushouldexpectforyourchild.

England and WalesSpecialeducationalneeds(SEN)frameworkWebsite:education.gov.uk

ScotlandTheEducation(AdditionalSupportforLearning)ScotlandAct2009Website:scotland.gov.uk

Northern IrelandCodeofPracticeontheIdentificationandAssessmentofSpecialEducationalNeedsandaSupplementtotheCodeofPracticeWebsite:northernireland.gov.uk

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Unfair treatment and the lawIfyourchildlivesintheUK,thereareequalitylawsthatmakeitillegaltodiscriminateagainstthembecauseoftheirepilepsy.TheEqualityActcoverschildreninEngland,ScotlandandWales.TheDisabilityDiscriminationAct(DDA)coverschildreninNorthernIreland.

Theequalitylawsmeanthatanyonewhoprovidesanykindofgoods or services must make sure that children with epilepsy are treated fairly.

Theequalitylawsalsomeanthatserviceprovidersmayneedtomake reasonable adjustments to make sure that your child is not atadisadvantagebecausetheyhaveepilepsy.Forexample,ateacher could provide written information for them if they have missed some of their lesson because they have had a seizure.

Your child is covered by the equality laws if they have epilepsy now,oriftheyhavehaditinthepast.Thelawsapplytothemeven if they take epilepsy medicines that control their seizures.

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Local servicesLocal authorities have a duty to provide a range of services for childrenwithepilepsy,whomayhavespecialneeds.Theseservices include the following.

• Medical care• Day care• Advice,informationandcounselling• After school activities• Help with transport and holidays • Shorttermorrespitecare• Cultural,socialandleisureactivities

Yourfamilydoctor,epilepsyspecialistnurse,healthvisitor,staffatyour local social services agency or local authority can advise you about these services.

Help and support for parents and carersComing to terms with your child’s epilepsy

It’snaturaltofeelanxiouswhenyouaretoldthatyourchildhasepilepsy. You may worry about how their epilepsy will affect them,andbeconcernedaboutside-effectsfromtheirepilepsymedicines.Youmayworrythatfamily,friends,andneighbourswillnotknowmuchaboutepilepsy,orhowtodealwithit.Findingout as much as possible about your child’s epilepsy and treatment,andsharingthatinformationwithotherpeople,couldbehelpful.Oncetheyunderstand,theyaremorelikelytoofferyou support.

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Talking about your concerns

Yourfamilydoctorcangiveyouinformationandadvice,butisunlikely to have time for long discussions. You could ask whether there is a children’s epilepsy specialist nurse attached to the epilepsyclinic.Thesenurseshavealotofexperienceofchildhoodepilepsy,andcanofferyouadviceandsupport.

Anothersourceofsupportisforum4e,EpilepsyAction’sonlinecommunity for people with epilepsy and their carers. You have tobe16orovertojointhisforum.So,althoughyourchildmaynotbeabletojoin,youcouldfinditarealhelpforyou,asaparent or carer.

Supporting your child with epilepsy

Somechildrendealwiththeirepilepsyandseizuresinaverymatteroffactway.Othersfeelembarrassedabouthavingseizures,particularlyiftheyhappenatschoolorwiththeirfriends.Oneofthebestwaystosupportyourchildisbytalkingtothemabouttheirepilepsy,andfindingoutwhattheirmainconcernsare.Youcouldtakeinformationintoschool,sothatstaffcanexplainepilepsytotheotherchildren.Theycanfindinformation for themselves on Epilepsy Action’s children’s and teenagewebsites.Goto:kids.epilepsy.org.uk/educationor

youngpeople.epilepsy.org.uk

Children with epilepsy 23

Further informationEpilepsy Action has more information about different aspects of epilepsy.

Other organisations

ACE Education AdvicelineFor independent advice on a wide range of education issues Tel:03000115142Website:ace-ed.org.uk

Carers UKCarersUKprovideinformation,adviceandsupportforcarersTel:08088087777Website:carersuk.org.uk

Contact a familySupportsthefamiliesofdisabledchildrenTel:08088083555Website:cafamily.org.uk

Disabled Living Foundation DLFcanprovideinformationaboutbedalarms,safetyhelmetsand other equipment your child might needTel:02072896111Website:dlf.org.uk

Children with epilepsy24

Independent Panel for Special Education Advice (IPSEA)OffersfreeandindependentadviceonLocalAuthorities’legalduties to assess and provide for children with special educational needsTel:08000184016Website:ipsea.org.uk

Local servicesThefollowingorganisationscantellyoumoreaboutservicesinyour area.EnglandandWales–yourlocalSocialServicesofficeNorthernIreland–DepartmentofHealth,SocialServicesandPublicSafetyScotland–yourlocalSocialWorkDepartmentAllofUK–yourlocalCitizensAdviceService:Tel:02078332181(fordetailsofyourlocalbranch)Website:adviceguide.org.uk

Mencap Supportspeoplewithalearningdisabilitytolivetheirlivesasthey chooseTel:08088081111Website:mencap.org.uk

NHS ChoicesNHSChoicesistheonline‘frontdoor’totheNHS.Itisthecountry’s biggest health website and gives all the information you need to make choices about your healthWebsite:nhs.uk

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About this publicationThisbookletiswrittenbyEpilepsyAction’sadviceandinformationteam,withguidanceandinputfrompeoplelivingwithepilepsy,andmedicalexperts.Ifyouwouldliketoknowwhereourinformationisfrom,orthereisanythingyouwouldliketosayaboutthebooklet,pleasecontactus.

Epilepsy Action makes every effort to ensure the accuracy of information in its publications but cannot be held liable for any actions taken based on this information.

Date:September2013;Dueforreview:September2015;Code:B002.03

AcknowledgementsEpilepsyActionwouldliketothankBernieConcannon,paediatricspecialistnurseinepilepsy,BirminghamChildren’sHospitalforhercontribution.BernieConcannonhasdeclaredno conflict of interest.

First aid for tonic-clonic seizuresThepersongoesstiff,losesconsciousnessandfallstothefloor.

Do... • Protectthepersonfrominjury(removeharmfulobjectsfromnearby)• Cushiontheirhead• Aid breathing by gently placing the person in the recovery position

whentheseizurehasfinished(seethepictures)• Staywiththemuntilrecoveryiscomplete• Becalmlyreassuring

Don’t... • Restrain the person’s movements • Putanythingintheirmouth• Trytomovethemunlesstheyareindanger• Give them anything to eat or drink until they are fully recovered • Attempt to bring them round

Call 999 for an ambulance if... • Youknowitistheperson’sfirstseizure• Theseizurecontinuesformorethanfiveminutes• Oneseizurefollowsanotherwithoutthepersonregaining

consciousness between seizures• Thepersonisinjured• You believe the person needs urgent medical attention

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1

2

3

First aid for focal (partial) seizuresThepersonmaynotbeawareoftheirsurroundingsorofwhattheyaredoing.Theymaypluckattheirclothes,smacktheirlips,swallowrepeatedly or wander around.

Do... • Guide the person away from danger • Staywiththepersonuntilrecoveryiscomplete• Becalmlyreassuring• Explainanythingthattheymayhavemissed

Don’t... • Restrain the person • Actinawaythatcouldfrightenthem,suchasmakingabrupt

movements or shouting at them • Assumethepersonisawareofwhatishappening,orwhathas

happened • Give them anything to eat or drink until they are fully recovered • Attempt to bring them round

Call 999 for an ambulance if... • Youknowitistheperson’sfirstseizure• Theseizurecontinuesformorethanfiveminutes• Thepersonisinjured• You believe the person needs urgent medical attention

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Children with epilepsy28

Further informationIfyouhaveanyquestionsaboutepilepsy,pleasecontacttheEpilepsy Helpline.

Epilepsy Action has a wide range of publications about many different aspects of epilepsy. Information is available in the followingformats:booklets,e-books,factsheets,posters,booksandDVDs.

Informationisalsoavailableinlargetext.

PleasecontactEpilepsyActiontorequestyourfreeinformationcatalogue.Ordownloadacopyatepilepsy.org.uk/catalogue

Epilepsy Action’s support servicesLocal meetings: a number of local branches offer support acrossEngland,NorthernIrelandandWales.

forum4e: our online community is for people with epilepsy and carersofpeoplewithepilepsy.Forpeopleaged16yearsorover.Join at forum.epilepsy.org.uk

Epilepsy awareness: Epilepsy Action has a number of trained volunteers who deliver epilepsy awareness sessions to any organisationthatwouldliketolearnmoreaboutepilepsy.Thevolunteers are able to offer a comprehensive introduction to epilepsy to a range of audiences.

Ifyouwouldlikemoreinformationaboutanyoftheseservices,pleasecontactEpilepsyAction.Contactdetailsareatthebackofthis booklet.

Children with epilepsy 29

Children with epilepsyWewouldliketoknowifthisbooklethasbeenhelpfultoyou.

Asaresultofreadingtheinformation,pleaseletusknowifyouagreewithanyofthefollowingstatements.Tickanyboxesthatapplytoyou.

I feel more informed about issues surrounding epilepsy.IfeelmoreconfidentabouttalkingtomyGP/epilepsyspecialist/epilepsy nurse.

Ifeelmoreconfidentabouttalkingaboutmyepilepsywithotherpeople.

Ihavetalkedtomyemployer/colleague/teacher/familyandtheyhave improved how well they support me.

IhaveusedotherEpilepsyActionservices,suchasthewebsite,theEpilepsyHelpline,supportgroupsoronlinecommunity(forum4e).

Ihaveusedothersupportservicesmentionedinthebooklet,andfound them helpful.

Please tell us how you think we can improve this information

Pleasereturnthecompletedformto:EpilepsyServices,EpilepsyAction,FREEPOSTLS0995,LeedsLS197YY

Ifyouwouldprefertotellusoverthetelephone,pleasecontacttheEpilepsyHelpline,freephone08088005050.

Thankyou!

B002.03

Epilepsy ActionFREEPOSTLS0995LEEDSLS197YY

RegisteredcharityinEngland(No.234343)

Children with epilepsy 31

How to contact the Epilepsy HelplineTelephonetheEpilepsyHelplinefreephone0808 800 5050MondaytoThursday9.00amto4.30pmFriday9.00amto4.00pmOurhelplinestaffareTextRelaytrained

Writetousfreeofchargeat FREEPOST LS0995, Leeds LS19 7YYEmail us at helpline@epilepsy.org.uk or visit our website: epilepsy.org.ukTextyourenquiryto0753 741 0044SendaTweetto@epilepsyadvice

About the Epilepsy HelplineThehelplineisabletoofferadviceandinformationin150languages.

Weprovideconfidentialadviceandinformationtoanyonelivingwithepilepsybutwewillnottellthemwhattodo.Wecangivegeneral medical information but cannot offer a medical diagnosis orsuggesttreatment.Wecangivegeneralinformationonlegalandwelfarebenefitissuesspecificallyrelatedtoepilepsy.Wecannot,however,takeuppeople’scasesontheirbehalf.

Ourstaffaretrainedadviserswithanextensiveknowledgeofepilepsyrelatedissues.Wherewecannothelpdirectly,wewill do our best to provide contact details of another service or organisationbetterabletohelpwiththequery.Indoingthis,Epilepsy Action is not making a recommendation.

Wewelcomecomments,bothpositiveandnegative,aboutourservices.

Toensurethequalityofourserviceswemaymonitorcallsto the helpline.

B002.03

Epilepsy Helpline: freephone 0808 800 5050

epilepsy.org.uk

Environmental statementAllEpilepsyActionbookletsareprintedonenvironmentallyfriendly,low-chlorinebleachedpaper.Allpaperusedtomakethisbookletis

fromwell-managedforests.

Epilepsy ActionNewAnsteyHouse,GateWayDrive,Yeadon,LeedsLS197XY

tel01132108800email epilepsy@epilepsy.org.uk

EpilepsyActionisaworkingnameofBritishEpilepsyAssociation.Acompanylimitedbyguarantee(registeredinEnglandNo.797997)

RegisteredcharityinEngland(No.234343)

Date:September2013;Dueforreview:September2015

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