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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.
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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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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.
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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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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
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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
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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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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.
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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!
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Epilepsy ActionFREEPOSTLS0995LEEDSLS197YY
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How to contact the Epilepsy HelplineTelephonetheEpilepsyHelplinefreephone0808 800 5050MondaytoThursday9.00amto4.30pmFriday9.00amto4.00pmOurhelplinestaffareTextRelaytrained
Writetousfreeofchargeat FREEPOST LS0995, Leeds LS19 7YYEmail us at [email protected] 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 [email protected]
EpilepsyActionisaworkingnameofBritishEpilepsyAssociation.Acompanylimitedbyguarantee(registeredinEnglandNo.797997)
RegisteredcharityinEngland(No.234343)
Date:September2013;Dueforreview:September2015
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