$5HVRXUFH *XLGH IRU3DUHQWV
www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide
¡ ¡ ¨ ©
£ ¤
¢ ¥ ¦ § ¦
!
"
$
#
¡ ¨ '
(
£ ¤
¢ ¥ ¦ %& ¥
- .
, ! # !
) * + *
'
- /
! !! ! # !
+ )
'
- 00
! , ! # !
+ )
¡ ¡¡ ¨
( (
£ ¤ ##
¢ ¥ ¦ % 12
- - 03
! # #
) *
0
!!
) +
0
, # ! !
) * + "
'
4 0$
! ! , # !
+ )
5
8 9
£7 7
162 6 ¦ ¥ 2:
( - 0;
!
< - 0>
=
? @ 3A
! = ! #
'C
B D 3 0
! !
C
D 33 ?
! !
D 3 B
!
< 3;
= ! #
- 3> @
! !
EF
¤ ¤ 7
¢ G % H
? 3/
! ! =
C
- A
I 0
J
www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide 2
WWhathat is epilepsy/seizure disorder?
7KHEUDLQFRQWDLQVELOOLRQVRIQHUYHFHOOVFDOOHGQHXURQVWKDWFRPPXQLFDWH HOHFWURQLFDOO\DQGVLJQDOWRHDFKRWKHU$VHL]XUHRFFXUVZKHQWKHUHLVDVXGGHQDQG EULHIH[FHVVVXUJHRIHOHFWULFDODFWLYLW\LQWKHEUDLQEHWZHHQQHUYHFHOOV7KLVFDQ FDXVHDEQRUPDOPRYHPHQWVFKDQJHLQEHKDYLRURUORVVRIFRQVFLRXVQHVV
6HL]XUHVDUHQRWDPHQWDOKHDOWKGLVRUGHU,QVWHDGHSLOHSV\LVDQHXURORJLFDOFRQGLWLRQ WKDWLVVWLOOQRWFRPSOHWHO\XQGHUVWRRG
+DYLQJDVLQJOHVHL]XUHGRHVQRWPHDQWKDWDFKLOGKDVHSLOHSV\$FKLOGKDVHSLOHSV\ ZKHQKHRUVKHKDVWZRRUPRUHVHL]XUHVZLWKRXWDFOHDUFDXVHVXFKDVIHYHUKHDG LQMXU\GUXJXVHDOFRKROXVHRUVOHHSGHSULYDWLRQ$ERXWPLOOLRQ$PHULFDQVKDYH HSLOHSV\DQGRIWKHQHZFDVHVWKDWGHYHORSHDFK\HDUXSWR%DUHFKLOGUHQ DQGDGROHVFHQWV,WGHYHORSVLQFKLOGUHQRIDOODJHVDQGFDQDIIHFWWKHPLQGLIIHUHQW ZD\V
What are the different kinds of epilepsy / seizure disorder?
7KHUHDUHPDQ\NLQGVRIHSLOHSV\7KH\HDFKFDXVHGLIIHUHQWV\PSWRPVDQGWKH\HDFK QHHGGLIIHUHQWWUHDWPHQWV,GHQWLI\LQJWKHW\SH'RUW\SHV(ZLOOKHOS\RXUFKLOGVGRFWRUVXJ JHVWWUHDWPHQWRSWLRQV Generalized Seizures 7KLVW\SHRIVHL]XUHLQYROYHVWKHZKROHEUDLQDQGLVWKHPRVWFRPPRQW\SHRIHSLOHSV\,QD JHQHUDOL]HGVHL]XUHWKHDEQRUPDOHOHFWULFDODFWLYLW\DIIHFWVWKHHQWLUHEUDLQ7KHVHVHL]XUHV SURGXFHPXVFOHWZLWFKHVFRQYXOVLRQVDQGORVVRIFRQVFLRXVQHVV3HRSOHZLWKWKLVW\SHRI HSLOHSV\GRQRWUHPHPEHUKDYLQJDVHL]XUH Partial Seizures 7KLVW\SHRIVHL]XUHLQYROYHVRQO\SDUWRIWKHEUDLQ6RPHWLPHVDSDUWLDOVHL]XUHFDQ VSUHDGWRLQYROYHWKHZKROHEUDLQ7KLVLVNQRZQDVDSDUWLDOVHL]XUHWKDWVHFRQGDULO\ JHQHUDOL]HV
)RUPRUHLQIRUPDWLRQRQVHL]XUHW\SHVSOHDVHUHIHUWRWKHFKDUWRQSDJH www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide 3
How is epilepsy/seizure disorder diagnosed?
What causes epilepsy/seizure disorder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www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide 4 What might trigger a seizure? 6RPHSHRSOHUHSRUWYHU\VSHFLILFWULJJHUVRULPPHGLDWHFDXVHVWKDWFDQEULQJDERXWD VHL]XUH&KLOGUHQZLWKHSLOHSV\DUHPRUHOLNHO\WRKDYHDVHL]XUH'KDYHDORZHU VHL]XUHWKUHVKROG(ZKHQWKH\KDYHDFROGWKHIOXRURWKHUFRPPRQLOOQHVVHV6RPH FRPPRQVHL]XUHWULJJHUVLQFOXGHWKHIROORZLQJ 1RWHQRXJKVOHHS )RRGDOOHUJLHV 6WUHVV )ODVKLQJOLJKWV'HJIURP YLGHRJDPHVVWUREHOLJKWV( $OFRKRO 'HK\GUDWLRQ 3RRU'LHW ,QDFWLYLW\ What are the treatment options? &KLOGKRRGHSLOHSV\LVXVXDOO\WUHDWHGZLWKPHGLFDWLRQVWKDWSUHYHQWVHL]XUHV,IWKH PHGLFDWLRQVGRQRWZRUNRULIWKHFKLOGKDVWRRPDQ\VLGHHIIHFWVWKHUHDUHRWKHU WUHDWPHQWRSWLRQV7KHVHLQFOXGHVXUJHU\WKHNHWRJHQLFGLHWRUYDJXVQHUYH VWLPXODWLRQ'916(2WKHUWUHDWPHQWWKHUDSLHVDUHEHLQJWHVWHGEXWKDYHQRW\HWEHHQ )'$DSSURYHG Medication &KLOGUHQRIWHQWDNHWKHVDPHDQWLHSLOHSWLFPHGLFDWLRQVDVDGXOWV0HGLFDWLRQPD\EHLQ WKHIRUPRIWDEOHWVVSULQNOHVFDSVXOHVRUV\UXS 7KHVHPHGLFDWLRQVDUHGHVLJQHGWRSUHYHQWVHL]XUHV6RPHDUHVXFFHVVIXOZLWKDIHZ VHL]XUHW\SHV RWKHUVKDYHDEURDGHUUDQJHRIDFWLRQ:KHQHYHUSRVVLEOHGRFWRUVWU\ WRFRQWUROVHL]XUHVZLWKRQHPHGLFDWLRQ6RPHFKLOGUHQKRZHYHUPD\QHHGWRWDNH PRUHWKDQRQH www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide 5 &KLOGUHQPD\UHVSRQGVRZHOOWRPHGLFDWLRQWKDWQRIXUWKHUVHL]XUHVRFFXUDVORQJDV WKHPHGLFDWLRQLVWDNHQUHJXODUO\DVGLUHFWHGE\WKHGRFWRU1RWKDYLQJVHL]XUHVGRHV QRWPHDQWKDWWKHPHGLFDWLRQLVQRORQJHUQHHGHG$OZD\VDVNWKHGRFWRUEHIRUH VWRSSLQJDVHL]XUHPHGLFDWLRQ'RLQJVRZLWKRXWPHGLFDOVXSHUYLVLRQPD\UHVXOWLQD VHL]XUHRUDQRWKHUW\SHRIUHDFWLRQ )RUPRUHLQIRUPDWLRQUHJDUGLQJ\RXUSUHVFULSWLRQVDVZHOODVPHGLFDWLRQWLSVVHHSDJH Ketogenic Diet ,IPHGLFDWLRQVGRQRWFRQWURODFKLOGVVHL]XUHVDGRFWRUPD\ UHFRPPHQGDVSHFLDOKLJKIDWORZFDUERK\GUDWHGLHWFDOOHGD NHWRJHQLFGLHW &DUERK\GUDWHVDUHVWULFWO\OLPLWHGDQGSDUHQWVKDYHWREHYHU\ FDUHIXOWKDWWKHFKLOGGRHVQRWHDWIRRGVWKDWDUHQRWRQWKHGLHW RUKDYHQRWEHHQSUHPHDVXUHGDQGSUHZHLJKHG 7KHGLHWUHTXLUHVDWHDPHIIRUW− WKHIDPLO\WKHSK\VLFLDQWKH GLHWLWLDQWKHQXUVHDQGLIWKHFKLOGLVROGHQRXJKWKHFKLOG KLPVHOIKHUVHOI−DOOZRUNLQJWRJHWKHUWRPDNHVXUHWKHGLHWLV IROORZHGDQGDQ\VLGHHIIHFWVDUHPRQLWRUHG Vagus Nerve Stimulation 9DJXVQHUYHVWLPXODWLRQ916LVDW\SHRIVXUJLFDOLQWHUYHQWLRQWKDWPD\EHWULHGZKHQ VHL]XUHVFDQQRWEHFRQWUROOHGE\RWKHUPHWK RGV7KHWUHDWPHQWZRUNVE\VHQGLQJUHJXODU VPDOOEXUVWVRIHOHFWULFDOHQHUJ\WRWKHYDJXV QHUYHDODUJHQHUYHLQWKHQHFNWKDWOHDGVGL UHFWO\LQWRWKHEUDLQ7KHHQHUJ\FRPHVIURPD VPDOOGLVNOLNHJHQHUDWRUDERXWWKHVL]HRID VWRSZDWFKVXUJLFDOO\ LPSODQWHGXQGHUWKHVNLQRQWKHFKHVW 7KHJHQHUDWRULVFRQQHFWHGWRZLUHVXQGHUWKH VNLQWKDWDUHZUDSSHGDURXQGWKHYDJXVQHUYH7KH916LVSXWXQGHUWKHVNLQE\D VXUJHRQ www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide 6 What do I need to know about taking care of my child? 7KHPRVWLPSRUWDQWZD\WRKHOS\RXUFKLOGDQGKLVRUKHUSK\VLFLDQVLVWREHDQDFWLYH PHPEHURI\RXUFKLOGVKHDOWKWHDP7KLVPHDQVEHLQJSUHSDUHGIRUYLVLWVNHHSLQJ UHFRUGVOHDUQLQJWRDVNTXHVWLRQVDQGDGYRFDWLQJIRU\RXUFKLOG1HWZRUNLQJZLWKRWKHU SDUHQWVRIFKLOGUHQZLWKHSLOHSV\PD\EHFRPHDVRXUFHRILQIRUPDWLRQVWUHQJWKDQG LQVSLUDWLRQDV\RXOHDUQWROLYHZLWK\RXUFKLOGVHSLOHSV\$QGPRVWRIDOOGRQRWIRUJHW WRWDNHFDUHRI\RXUVHOI?ZLWKRXW\RX\RXUFKLOGVQXPEHURQHDGYRFDWHLVJRQH. Make observations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www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide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ttend support groups and networks with other parents )LQGVXSSRUWJURXSVIRU\RXUVHOI\RXUVSRXVHDQG\RXUIDPLO\7DNHFDUHRI\RXUVHOIWR DYRLGEHLQJRYHUZKHOPHGRUJHWWLQJVLFN $OVRSDUHQWVPD\EHQHILWIURPPHQWDOKHDOWKFRXQVHOLQJVHUYLFHVDQGDUHHQFRXUDJHG WREULQJXSWKHLUPHQWDOKHDOWKFRQFHUQV'HJGHSUHVVLRQDQ[LHW\(WRWKHLUSULPDU\ KHDOWKFDUHSURYLGHU www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide 8 How can I pay for or access the care my child needs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anaged Care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www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide 9 Mental Health Services for Children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hat is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• 9LHZJHWDFRS\RI\RXUKHDOWKUHFRUGV • +DYHFRUUHFWLRQVDGGHGWR\RXUKHDOWKLQIRUPDWLRQ • 5HFHLYHDQRWLFHWHOOLQJ\RXKRZ\RXUKHDOWKLQIRUPDWLRQPD\EHXVHGDQGVKDUHG www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide ,I\RXEHOLHYH\RXUULJKWVDUHEHLQJGHQLHGRU\RXUKHDOWKLQIRUPDWLRQLVQRWEHLQJSURWHFWHG K OPQ O Z ZO \] O Z ZO ] O LM N RSTUMRVL WXU MY N MR VVX TR MY N V [ \RXFDQGRWKHIROORZLQJ [ ^ K Q ] ] _ ` a a ` ai in a n W b cdecf g b h eg ld c l f h ed k m k ILOHDFRPSODLQWZLWK\RXU j k o o in a i n q r ` a s rtuu a i a in b p c b g b h f hf dec g b h v lcf d wd v k SURYLGHURUKHDOWKLQVXUHU k o i x x i a ` a i a rn a n b cd g b h f lbh d d b c y c l g b h fc cd f h ed mk m m k k k ILOHDFRPSODLQWZLWKWKH j z i i n a q b p p ff b d 86JRYHUQPHQW 0( 1+ How can I assure the best health care for my child? Coordination of care $VPRUHKHDOWKFDUHSURIHVVLRQDOVDUHLQFOXGHGLQ\RXUFKLOG VKHDOWKFDUHWHDP\RX PD\IHHORYHUZKHOPHGDQGFRQIXVHG+HDOWKFDUHSURIHVVLRQDOVKDYHUHFRJQL]HGWKH QHHGWRSDUWQHUZLWKIDPLOLHVLQFDULQJIRUFKLOGUHQHVSHFLDOO\WKRVHZLWKVSHFLDOKHDOWK FDUHQHHGV)RUFKLOGUHQZLWKHSLOHSV\DQGWKHLUIDPLOLHVVXFKFDUHLVWKHUHIRUHLGHDOO\ SURYLGHGLQDZD\WKDWIHHOVOLNHD 2 KRPH 3 ,WLVVRPHWLPHVUHIHUUHGWRDVD 2 PHGLFDO KRPH 3 ZKLFKLVQRWDEXLOGLQJKRXVHRUKRVSLWDO EXWDWHDPDSSURDFKWRSURYLGLQJKHDOWKFDUH www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide WhereWhere can I find support from other parents like me? 6XSSRUWJURXSVPD\EHLQSHUVRQFKDWURRPV DQDUHDRQWKHLQWHUQHWZKHUH\RXFDQ FKDWZLWKRWKHUPHPEHUV HOHFWURQLFPDLOLQJOLVWV XVHUVFDQVXEVFULEHWRDPDLOLQJ OLVWE\VHQGLQJDQHPDLOQRWHWRDPDLOLQJOLVWWKH\OHDUQDERXW RUPHVVDJHERDUGV DQDSSOLFDWLRQWKDWDOORZVXVHUVWRSRVWDQGUHSO\WRPHVVDJHVIURPRWKHUXVHUVDQG UHYLHZWKHIORZRIDGLVFXVVLRQ−DOVRNQRZQDVDGLVFXVVLRQJURXS *URXSVFDQEH XVHGWRVKDUHYDOXDEOHLQIRUPDWLRQDERXWGRFWRUVPHGLFDWLRQVDQGWUHDWPHQWV7KH LQIRUPDWLRQH[SHULHQFHVDQGVXFFHVVHVJDLQHGWKURXJKHDFKIDPLO\ VMRXUQH\FDQEH VKDUHGWRKHOSRWKHUIDPLOLHVLQVLPLODUVLWXDWLRQV $OZD\VUHPHPEHUWKDWVXSSRUWJURXSVDQGRQOLQHJURXSVDUHPDGHXSRIRWKHUSDUHQWV OLNH\RX'RQRWWDNHPHGLFDODGYLFHIURPDQXQWUXVWZRUWK\VRXUFHDQGDOZD\VFKHFN ZLWK\RXUGRFWRUEHIRUHWU\LQJVRPHWKLQJQHZ In person support Online support (SLOHSV\)RXQGDWLRQH&RPPXQLWLHV +HUH\RXUNLGVFDQLQWHUDFWZLWKRWKHUVDIIHFWHGE\HSLOHSV\IURPDURXQGWKHZRUOG WKURXJKWKUHDGHGGLVFXVVLRQVDQGUHDOWLPHFKDWV6HOHFWIURPDPRQJWKHIROORZLQJ JURXSV o o t a n s ` in t a n u a ` a ` a n nx axi n i x a n i ` i ` q d cf d v d cf v b h b d cf v h f b e l d y c l d d fg m k k k k k m m k − u x i a ` x i ai x i in x in nx be eg l f v b h fe hffdf b hf be eg ff hdf | e h v b e | fc cd | j k j k k j k m m k m k k − { o oo x a a q d d d b cf k m o }ai nx } i x n ` ` a a i ` ` a q d f | p g | ~ b d d f h b c b c lbfd y lb v d f h b c k m j j − o n u n in a ` n nx n a a q ld bh vd b p ed cb l v b hc v dc cb by bc ld pdp wd f k m mk k k { − o u ` a n q n a ` ed hfc b cd d f dd b h mk { − o n i x ` a i a n ` n nx ` i ` q b c c d d f d ec c v lc c cd d f wbhc eed c ed d d fg m k k m k k k k m − z o o z z ix ai nx ` ` ` ` in i ix ix q f ld d g h g ebb cdf f b hw v df cb f h w b pd b hc cb m j m k mm k m −{ t a nx i i } n ` x ai q t i ` ` ` q c ld g v b h f c c ld h f lb d fb pd fcb d f g v pdf y c l c ld h g b mk k mk k `i ` } nx i n s ` n a q cb c ld d fg b h c b f b pd vd cb d cd m k k www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide Do you know what to do when a seizure occurs? $QLPSRUWDQWZD\WRDVVXUH\RXUFKLOG H VVDIHW\LVWRNQRZZKDWWRGRZKHQDVHL]XUH RFFXUV7KHQ\RXFDQPDNHRWKHUVDZDUHRIWKHQHFHVVDU\ILUVWDLGLQFDVH\RXUFKLOG KDVDVHL]XUHZKHQWKH\DUHDURXQG 0RVWVHL]XUHVDUHRYHUVRTXLFNO\WKDW \RXGRQRWUHDOO\KDYHPXFKWLPHWRGR DQ\WKLQJ$IWHULWLVRYHU\RXVLPSO\ PDNHVXUHWKDW\RXUFKLOGZDVQRW LQMXUHG7RQLFFORQLFVHL]XUHVDUHWKH PRVWGUDPDWLFDQGIULJKWHQLQJRIWKH VHL]XUHVDQGWKH\XVXDOO\ODVWORQJHU WKDQRWKHUVHL]XUHV&35LVUDUHO\XVHG ZKHQDFKLOGLVVHL]LQJ 3OHDVHUHIHUWRSDJHIRUILUVWDLGSURWRFRO How can I make sure others are aware of what to do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eizure Action Plan %HVXUHWKDW\RXUFKLOGLVSURWHFWHGDQGVDIHHYHU\ZKHUHKHRUVKHJRHVE\KDYLQJD 6HL]XUH$FWLRQ3ODQ,WRXWOLQHVHPHUJHQF\PHGLFDOFDUHPHGLFDWLRQVFRQWDFWVDVZHOO DVRXWOLQLQJ\RXUFKLOGH V VHL]XUHVDQGWULJJHUV$VN\RXUQHXURORJLVWDERXWFUHDWLQJD VHL]XUHDFWLRQSODQIRU\RXFKLOG7KH\FDQEHGLVWULEXWHGWRWHDFKHUVVFKRROQXUVHV IDPLO\PHPEHUVFRDFKHVDQGEDE\VLWWHUV7KHUHLVD6HL]XUH$FWLRQ3ODQORFDWHGRQ SDJH www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide WhatWhat do I need to know about my child attending school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www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide HowH ow can I educate others about my child’s epilepsy/seizure disorder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eizure Classification Seizure Type Description Tonic-Clonic or Grand Mal This is the most common sort of generalized seizure and is the most (loss of consciousness) recognized seizure. The person becomes stiff and falls to the ground. Teeth clench and the arms, and usually the legs, begin to jerk rapidly and rhythmically. The seizure usually lasts no more than a few minutes, after which the jerking slows and stops. Absence or Petit Mal During an absence seizure it might seem like the person is daydreaming. (loss of consciousness) However, in an absence seizure the person cannot be alerted or woken up as they are unconsciousness and unaware of what is happening around them. These seizures usually last a few seconds. Myoclonic or Jerks Myoclonic means jerking of twitching of a muscle. During this seizure (no loss of consciousness) brief shock-like jerks of a muscle or group of muscles occur. These usually involve the neck, shoulders and upper arms. They usually occur in the morning and in clusters. GENERALIZEDTonic and Atonic Tonic seizures result in all muscles contracting. The body stiffens and (loss of consciousness) the person will fall over if unsupported. Atonic seizures are, in a way, opposite, as all muscle tone in lost and the person simply drops to the ground. When the body goes limp it inevitably falls forward, potentially causing head injuries. Status Epilepticus This seizure is characterized by frequent, long-lasting seizures without (loss of consciousness) regarding consciousness between attacks. Simple In these types of seizures, even though a person is consciousness, the (no loss of consciousness) person will not remember experiencing this type of seizure nor can they stop or control the seizure. Simple partial seizures can be different depending on where in the brain the epileptic activity is occurring. Examples of symptoms are the movement of a limb, tingling, experiencing a smell or taste and going pale or sweating. Complex During these seizures a person will pick at the air or clothing, move their (loss of consciousness) mouth, or repeat other purposeful actions. These movements are called P A R T I A L “automatisms.” They usually last between 30 seconds to 2 minutes. The person’s consciousness is impaired so they will not remember seizure or their memory will be distorted. o o u x ` x a `i ` u i n a i i `i ` u i i n ` i ` rn a i n i a ` cd b p d fg ec b c f l d fg ffb e c b | d fg b p c b d h d g d f | k m m k m k { o ` q `i ` q a q in a q u q lcc yyy d d fg b v h b e l c lcp hv hfc | m k m www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide Diagnostic Tips TOOLS FOR DIAGNOSIS Information about Seizure(s) Questions that may be asked: • What circumstances surrounded the seizure? The doctor will ask for a com- • What seemed to bring on the seizure? plete description of what hap- • What happened before the seizure? pened. • How did you child feel before, during, and after the seizure? • Can you describe the seizure behavior? • What happened after the seizure? • Where was the child when the seizure occurred? I N T E RMedical V I E W History You may be asked about: • Family history of seizures • Medical conditions or medications • General medical history of your child An examination of muscle strength, reflexes, eyesight, hearing and ability to detect various sensations, are tested to better understand the cause of the seizure(s). E X A M P H Y S I C A L EEG An EEG measures the electrical impulses in the brain. During an (electroencephalogram) EEG, electrodes (small metal disks) are attached to specific locations on the head and monitored. Abnormal electrical spikes indicate seizure activity. CT or CAT Scan A CT scan is an x-ray of the brain that creates three-dimensional (computerized axial images of the brain and shows possible abnormalities. tomography) MRI An MRI is another imaging method using magnets instead of X-rays. (magnetic resonance imaging) MRI tests provide detailed images of the brain. CT or MRI scans may be used to search for any growths, scars or other physical conditions in the brain that may be causing the seizures. Blood Tests Tests to measure white blood cell count, blood sugar, sodium, calcium and electrolyte levels, and liver and kidney function. Blood tests also help rule out other illnesses. NEUROLOGICAL EXAM (TESTS) Other Tests Other tests may be ordered as needed. z o a x ` x a i n in `i ` ` q x q ` i ` ix l c cd b p d w | v b f v d fg | lcc yyy y d wp eb p d d fg v h d k k k k m m x i n in `i ` u q v b f v d d fg hvhfc | k m www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide First Aid for Seizures Seizure Type What to Do Tonic-Clonic or Grand Mal • Move child away from hard, sharp, or hot objects. Put something (loss of consciousness) soft under the child’s head and turn the child on one side to keep airway clear. • Do not put anything in the child’s mouth or give liquids or medications during or immediately after the seizure. • Do not try to hold the child’s tongue; it cannot be swallowed. • Do not restrain movement. • Reassure child when consciousness returns. • Call for emergency aid if: ∗ This is the child’s first seizure of unknown cause ∗ Multiple seizures occur ∗ The child seems sick, injured or unresponsive Absence or Petit Mal • Observe the child carefully. (loss of consciousness) • Reassure the child if he or she is frightened or confused. • Try to count and record episodes. • No first aid is necessary, but if this is the first observation of an absence seizure, medical evaluation is recommended. Myoclonic or Jerks • Speak calmly to the child. (no loss of consciousness) • If the child is walking guide him or her gently to a safe place. GENERALIZED • If the seizure is a first occurrence, a medical check-up is recommended. Tonic and Atonic • Comfort the child and check to see if he or she is hurt. (loss of consciousness) • If the seizure is a first occurrence, a medical check-up is recommended. Status Epilepticus • This condition requires immediate medical attention. (loss of consciousness) • Do not attempt to transport an actively seizure child in your car unless an ambulance is not available. • If the child has had this type of seizure before, follow advice specifically given by the child's doctor. Simple • No first aid is necessary, however, if the seizure is a first occur- (no loss of consciousness) rence, a medical check-up is recommended. Complex • Speak calmly to the child. (loss of consciousness) • If the child is walking guide him or her gently to a safe place. • Pay attention to the duration of the seizure; most partial seizures last a minute or two. However, a child may be confused for up to P A R T I A L half an hour afterwards. Longer periods of confusion may mean that seizure activity is continuing and the child needs medical attention. www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide Pharmaceutical Contact Information $EERWW/DERUDWRULHV ' 'HSDNRWH 2UWKR0F1HLO ' 7RSDPD[ ( ZZZKHOSLQJSDWLHQWVRUJ ZZZDFFHVVZHOOQHVVFRPDZSDWLHQW SDSKWPO &HSKDORQ,QF ' *DELWULO ( 3IL]HU ' 'LODQWLQ1HXURQWLQ=DURQWLQ ( (LVDL=RQHJUDQ ( ZZZSIL]HUKHOSIXODQVZHUVFRP 8&%3KDUPD ' .HSSUD ( *OD[R6PLWK.OLQH ' /DPLFWDO ( ZZZEULGJHVWRDFFHVVFRP 9DOHDQW 'LDVWDW0\VROLQH 1RYDUWLV ' 7HJUHWRO7ULOHSWDO ( ZZZSKDUPDXVQRYDUWLVFRPQRYDUWLVSDS SDSMVS Medication Tips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www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide Medication Assistance Programs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www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide Local Resources New Hampshire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www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide Local Resources Maine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www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide National Resources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www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide National Resources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www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide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www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide Seizure Action Plan: Name: Childs DOB: / / Childs Weight: Date Taken: Parents: Emergency Contact: Email: Relation: Phone: Phone: Pediatrician: Neurologist: Phone: Phone: Email: Email: Seizure Information: Seizure Type: What Happens: Length: Frequency: Triggers: Daily Seizure Medication: Medications: How Much: How Often: Diet: Special Instructions: When Started: Devices Type: Special Instructions: Date Implanted: Serial # / Model #: Seizure First Aid: □ Keep calm, provide reassurance, remove bystanders □ Keep airway clear, turn on side if possible, nothing in mouth □ Keep safe, remove objects, do not restrain □ Time, observe, record what happens □ Stay with person until recovered from seizure □ Other care needed: Emergency Care / Rescue Treatments: Name: Amount to Give: When to Give: How to Give: Call 911 or Seek Emergency Medical Attention If: □ Generalized seizure longer than 5 minutes □ Two or more seizures without recovering between seizures □ “Emergency Care / Rescue Treatments” don't work □ Injury occurs or is suspected, or seizures occurs in water □ Breathing, heart rate or behavior doesn't return to normal □ Unexplained fever or pain, hours or few days after a seizure Authorizations: I have read this action plan and agree with the information . I also give permission for the school nurse to discuss the management of epilepsy with members of the medical team. Parent / Guardian Signature ______Date___/___/___ The school nurse may administer medications per this action: Provider Signature______Date___/___/___ In general, children with seizure disorders should not be limited in their activities. However, climbing to heights without a harness or swimming should always be closely monitored. Patient Information Sheet Patient Information Sheet Please check what happens (or happened) during your child’s seizure DESCRIPTION OF SPELL OR SEIZURE / DESCRIPCIÓN DEL ATAQUE O CONVULSIÓN Body / Cuerpo whole/ right/ left can’t tell entero lado derecho lado izquierdo no sabría decir ? J jerking/ J stiffness/ J jerking and stiffness/ can’t tell Movement/ espasmos rigidez espasmos y rigidez no sabría decir Movimiento ? & up/ ↑ closed/ right/ → left/ Eyes en blanco cerrados a la derecha a la izquierda Ojos stare/ stare and blink/ no change/ can’t tell/ mirada fija mirada fija y parpadeo sin cambio no sabría decir ? → → Skin Color Color de piel blue/ no change/ can’t tell/ morada sin cambio no sabría decir ? Accident J pee – pee J poop J none can’t tell/ Accidente orina popo ninguno no sabría decir ? Mouth J dry J drool J foam J bite tongue can’t tell/ Boca seca babea le sale espuma se muerde la lengua no sabría decir ? How Often / J daily J weekly J monthly J other : Frecuencia diariamente semanalmente mensualmente otro AFTER SEIZURE OR SPELL / DESPUÉS DEL ATAQUE O CONVULSIÓN J asleep/ J drowsy/ J alert/ J confused/ J paralyzed se duerme soñoliento alerta confundido paralizado www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide Quick Tips: Antiepileptic Medicines 7KH$('QHHGVWREHWDNHQHYHU\GD\WRSUHYHQWVHL]XUHV+HUHDUHVRPHWLSVIRU UHPHPEHULQJWRJLYHPHGLFLQH • *LYHWKHPHGLFLQHDWWKHVDPHWLPHHYHU\GD\DVSDUWRI\RXUFKLOG V GDLO\ URXWLQH+DYH\RXUFKLOGWDNHLWZLWKDPHDORUZKHQWHHWKDUHEUXVKHG • /HW\RXUFKLOGSXWDVWLFNHURQWKHFDOHQGDUZKHQHYHUWKHPHGLFLQHLVWDNHQ 7KLVSURYLGHVDIXQUHZDUGIRU\RXUFKLOG,WLVDOVRDJRRGZD\WRNHHSWUDFN RIWKHPHGLFLQHGRVHV • 8VHDSLOOER[WRKHOSFKHFNWKDWDGRVHZDVQ W IRUJRWWHQ ,WLVLPSRUWDQWWRQRWPLVVDQ\PHGLFLQHGRVHV • ,I\RXIRUJHWDGRVH!JLYHWKHPHGLFLQHDVVRRQDV\RXUHPHPEHU'RQRW JLYHGRVHVDWWKHVDPHWLPH $ XQOHVV\RXUGRFWRUVD\VWKLVLVRND\WRGR % *LYHWKHQH[WGRVHDWOHDVWKRXUVODWHU'RQRWWU\WRFDWFKXSRQPLVVHG GRVHV • ,I\RXUFKLOGWKURZVXSWKHPHGLFLQHZLWKLQPLQXWHVRIJLYLQJWKHGRVH! WU\WRJLYHWKHGRHVDVVRRQDV\RXUFKLOGLVDEOHWRNHHSGRZQVPDOO DPRXQWVRIFOHDUOLTXLGV,I\RXUFKLOGWKURZVXSWKHGRVHDVHFRQGWLPH! GRQ WUHSHDWWKHGRVH&DOO\RXUGRFWRURUQXUVHIRUKHOS ,I\RXUFKLOGEHFRPHVLOORUKDVVLGHHIIHFWVZKLOH\RXDUHHLWKHULQFUHDVLQJRU GHFUHDVLQJWKH$('PHGLFLQH!FDOO\RXUGRFWRURUQXUVH7KH\ZLOOJLYH\RXLQVWUXFWLRQV DERXWWKHSODQIRUWKHQH[WPHGLFLQHFKDQJH 6RPHPHGLFLQHV!LQFOXGLQJRYHUWKHFRXQWHUPHGLFLQHVPD\DIIHFW\RXUFKLOG V$(' PHGLFLQHVE\PDNLQJLWWRRVWURQJRUWRRZHDN&KHFNZLWK\RXUSKDUPDFLVWWREHVXUH WKDWRWKHUPHGLFLQHVDUHRND\WRWDNHZLWKWKH$('PHGLFLQH,WLVRND\WRXVH DFHWDPLQRSKHQ $ 7\OHQROp % RULEXSURIHQZKHQ\RXUFKLOGLVWDNLQJDQDQWLVHL]XUH PHGLFLQH ,WLVJRRGLGHDWRFDUU\DOLVWRI\RXUFKLOG VPHGLFDWLRQVZLWK\RX7KLVOLVWVKRXOG LQFOXGHDQ\YLWDPLQV!VXSSOHPHQWV!RUKRPHUHPHGLHV :KHQ\RXUFKLOGLVROGHQRXJK!KHOSWKHPOHDUQWRUHPHPEHUWRWDNHWKHLUPHGLFLQHRQ WKHLURZQ$JRRGWLPHWRVWDUWLVZKHQ\RXUFKLOGLVEHWZHHQWKDQGWKJUDGH www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide Quick Tips: Lifestyle Factors &HUWDLQWKLQJVPD\PDNHVHL]XUHVRFFXUPRUHHDVLO\7KHVHDUHFDOOHG ! WULJJHUV " 6RPHWULJJHUVFDQEHDYRLGHG$VXFKDV • /DFNRI6OHHS • )RUJHWWLQJWRWDNH\RXUPHGLFDWLRQ • 'ULQNLQJ$OFRKRO 2WKHUWULJJHUV$VXFKDVJHWWLQJVLFNRUIRUZRPHQ$JHWWLQJ\RXUPHQVWUXDOSHULRG$FDQ ' W EHDYRLGHGWKH\DUHMXVWSDUWRIOLIH2IWHQWDNLQJJRRGFDUHRI\RXUERG\FDQKHOSWR DYRLGVRPHRIWKHVHL]XUHWULJJHUV • (DWZHOOEDODQFHGPHDOVHYHU\GD\ • *HWUHJXODUH[HUFLVHWRNHHSWKHERG\KHDOWK\%HLQJLQYROYHGLQVSRUWVRU DQ\IXQDFWLYLWLHVDUHJRRGZD\VWRJHWH[HUFLVH7DONZLWK\RXUGRFWRURU QXUVHDERXWWDNLQJSDUWLQSK\VLFDODFWLYLW\ • *HWDIXOOQLJKW VVOHHS&KLOGUHQVKRXOGJHWDWOHDVWKRXUVRIVOHHSD QLJKW!DQGWHHQDJHUVVKRXOGJHWDWOHDVW • $YRLGFDIIHLQHFORVHWREHGWLPH&DIIHLQHPD\PDNHLWKDUGHUWRJHWDSURSHU QLJKW VVOHHS5HPHPEHUWKDWFKRFRODWH!PRVWVRGDV!WHDVDQGFRIIHH FRQWDLQFDIIHLQH!HVSHFLDOO\HQHUJ\GULQNV $V\RXUFKLOGJHWVROGHU$KHOSWKHPOHDUQWRWDNHSDUWLQWKHLURZQ KHDOWKFDUH • :KHQ\RXUFKLOGWXUQV!EHJLQWDONLQJWRWKHPDERXWWKHFKDQJHVWKDWZLOO KDSSHQLQFOLQLF7HOO\RXUFKLOGWKDWGRFWRUVDQGQXUVHVZLOOVWDUWWRDVNWKHP TXHVWLRQVGLUHFWO\7KLVZLOOOHW\RXUFKLOGJHWFRPIRUWDEOHDQVZHULQJ TXHVWLRQVZKLOHWKH\KDYHWKHVDIHW\RIDSDUHQWLQWKHURRP • :RUNZLWK\RXUFKLOGDWKRPHWRWDNHDQDFWLYHUROHLQWKHLUFDUH*HQWO\ HQFRXUDJHLQGHSHQGHQFH!EXWNQRZWKDWLWZLOOWDNHWLPH • :KHQ\RXUFKLOGLV!HQFRXUDJHWKHPWRVHHWKHKHDOWKFDUHWHDPZLWKRXW \RXIRUPRVWRIWKHYLVLW www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide Quick Tips: Travel $GYDQFH3ODQQLQJ ; &DOOWKHDLUOLQHVDQGH[SODLQ\RXUQHHGV$VNZKDWDFFRPPRGDWLRQVWKH\SUR YLGH$VNDERXWJXLGHOLQHVIRUFDUU\RQPHGLFLQHV ; ,I\RXDUHWUDYHOLQJWRWKHPHSDUNVRURWKHUORFDWLRQV!FDOODQGDVNZKDWKHOS WKH\SURYLGH ; 3LFNRXWVQDFNV!ERRNVRUWR\VZLWK\RXUFKLOGWRKHOSWKHPHQMR\WKHWULS 3XWWRJHWKHUDSDFNHWWKDWKDVSKRQHQXPEHUV\RXPD\QHHG!LQFOXGLQJ\RXU FKLOG V 3ULPDU\FDUHSURYLGHU 1HXURORJ\SURYLGHU 3KDUPDFLVW (PHUJHQF\IDPLO\FRQWDFWZKRNQRZV\RXUFKLOG VPHGLFDOKLVWRU\ 3KDUPDF\DQGKRVSLWDOZKHUH\RXZLOOEHWUDYHOLQJ 0HGLFDWLRQ • %HVXUHWRKDYH\RXUSUHVFULSWLRQVILOOHGDQGSLFNHGXSEHIRUH\RXOHDYH KRPH • *HWSUHVFULSWLRQVUHILOOHGZHHNVEHIRUHWKHVWDUWRI\RXUYDFDWLRQWREH VXUH\RXKDYHHQRXJKWRWDNHZLWK\RX • ,IQHHGHG!FDOO\RXULQVXUDQFHFRPSDQ\WRVHHLIWKH\ZLOOJLYH\RXDGYDQFH GRVHVVR\RXZLOOQRWUXQRXW • )RUDLUWUDYHO!FDUU\WZRVXSSOLHVRIPHGLFLQHVZLWK\RX3XWRQHLQ\RXUFDUU\ RQDQGWKHRWKHULQ\RXUFKHFNHGEDJJDJH,I\RXUFKLOGXVHV'LDVWDWp!NHHS WKLVLQ\RXUFDUU\RQEDJ • &DUU\DZULWWHQOLVWRIPHGLFLQHVDQGGRVHV7KLVLVFDOOHGD+RPH0HGLFDWLRQ /LVW • %ULQJ\RXUSKDUPDF\SKRQHQXPEHUIURPKRPH,IQHHGHG!WKH\FDQKHOS \RXZLWKSRVVLEOHLQVXUDQFHLVVXHVDWDQHZSKDUPDF\ • ,I\RXUFKLOGLVQRWXVLQJDUHVFXHPHGLFLQHQRZ!VXFKDV'LDVWDWp!FDOO\RXU QXUVHRUGRFWRUWRVHHLILWLVQHHGHGIRUWKHWULS (PHUJHQF\&DUH $VNIRUDQGFDUU\DFXUUHQWHPHUJHQF\FDUHSODQVLJQHGE\\RXUFDUHSURYLGHU www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide Quick Tips: Travel 9DJDO1HUYH6WLPXODWRU • &DUU\WKHUHJLVWUDWLRQFDUGZLWK\RXLQFDVHLWLVQHHGHGDWWKHDLUSRUW • ,IDLUOLQHRUWRXULVWDWWUDFWLRQVFUHHQLQJLVQHHGHG!DVNWRKDYH\RXUFKLOG PDQXDOO\VHDUFKHG7KLVZLOODYRLGVHWWLQJRIIWKHVHFXULW\VFUHHQLQJGHYLFH .HWRJHQLF'LHW • $VNWRKDYHDUHIULJHUDWRULQ\RXUKRWHOURRPWRVWRUHVSHFLDOGLHWIRRGV • 0DNHHQRXJKPHDOVWRKDYHRQKDQGGXULQJWKHWLPHWKDW\RXDUHWUDYHOLQJ 3ODQH[WUDPHDOVLQFDVH\RXDUHGHOD\HGE\ZHDWKHU%HVXUHWRWDNHDQ LQVXODWHGFDUULHUDQGHQRXJKFRROLQJSDFNVWRNHHSIRRGWKDW\RXFDUU\LQJ VDIH • )RUWUDYHORXWRIWKHFRXQWU\!\RXZLOOSUREDEO\QHHGDOHWWHUIURPWKHGRFWRU WRWDNHIRRGVIRUWKHGLHWLQDQGRXWRIWKHFRXQWU\ $W\RXUGHVWLQDWLRQ • &KHFNIRUWKHORFDWLRQDQGSKRQHQXPEHURIDSKDUPDF\DQGKRVSLWDOQHDU \RX • &DOODKHDGIRUDGYDQFHVHDWLQJDWUHVWDXUDQWVDQGORFDODWWUDFWLRQV • +DYHDKRVSLWDOEDJSXWWRJHWKHUDKHDGRIWLPHVRWKDW\RXZLOOKDYH HYHU\WKLQJWKDW\RXQHHG,QFOXGHDFKDQJHRIFORWKHV!PRQH\!WKH HPHUJHQF\FDUHSODQDQG\RXUFDUHQRWHERRNRUQRWHVDERXW\RXUFKLOG V FDUH • ,I\RXQHHGWRYLVLWWKH(PHUJHQF\5RRPZKLOHRQYDFDWLRQ!WKHIROORZLQJWLSV PD\KHOSPDNHLWDVPRRWKYLVLW • &DUU\DQHPHUJHQF\FDUHSODQIRU\RXUFDUHSURYLGHU7KHSODQVKRXOGLQ FOXGHWKHGRVHVRIHPHUJHQF\PHGLFLQHVDOUHDG\FDOFXODWHGIRU\RXUFKLOG V ZHLJKW7KLVFDUHSODQVKRXOGEHVLJQHGE\\RXUFDUHSURYLGHU • %ULQJQRWHVRQZKDWKDVEHHQGRQHLQWKHSDVWWRFRQWURO\RXUFKLOG VVHL ]XUHV,QFOXGHLQIRUPDWLRQRQZKDWKDVQRWZRUNHGIRU\RXUFKLOG • %HDQDGYRFDWH www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide References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www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide 3KRWRJUDSKVDSSHDUFRXUWHV\RI'DUWPRXWK+LWFKFRFN0HGLFDO&HQWHU2ULJLQDOO\ 3XEOLVKHG6HSWHPEHUE\86&8QLYHUVLW\&HQWHUIRU([FHOOHQFHLQ 'HYHORSPHQWDO'LVDELOLWLHV!&KLOGUHQV+RVSLWDO/RV$QJHOHV(GLWHGDQGUHFUHDWHGE\ +RRG&HQWHUIRU&KLOGUHQDQG)DPLOLHVWKURXJK'DUWPRXWK0HGLFDO6FKRROLQ 4XLFN7LSVDUH7LS6KHHWVPDGHSRVVLEOHWKURXJKWKHJHQHURVLW\RIWKH:LVFRQVLQ 6HL]XUH&RQWURO1HWZRUNDQG+56$*UDQW $ L + 0& % 7KHFRQWHQW GRHVQRWH[SUHVVWKHYLHZVRI+56$DQGDUHH[SUHVVO\WKHYLHZVRIWKHDXWKRUV ¼ ½ ¾ ¿À À ¾  ¼ ½ ¡¢ £ ¤ ¥ ¦§ ¨©§ £§ ª « ¬ © ¦§ ® ¦£ ¯©§ °¡§ ¢ ± ² ³´ µ¶· ¶ ¸¹ º¶µ ² » µ » Á ¹ à ¶ ¾  ¼ ÂÀ À ½ ¼ ½ Ç ¿Â ¿È ¼ ½ É Â À ¿Â À ¼  ¼ À ¿À   À¼ ¶µ¶ ³ ¸ ij ¶ ³ ¸ ³ µ Å »¸µ ƶ³ ¸ ¶³ ƶ³ ¸ ¶ · »Ê¶´ ³ µ ˶´¹ ʶ´ Ì µ à » »´ ³ »¹ µ¶ Á ³ Í ÎÏ ÎÒÓ È ¾ ¿À ¼ ¼ ½ É À  ¼ Õ À¼  ¾ Â Ö À À Ø À¼ Ø ¼ È Æ ÄÅÐ Ñ µ¶µ ¹ ¶ Ô Å Ô »·¶ ´» Ŷ ¶ ¹ × Ê¶ ¸¸¶ ʶ » ¶· ¶ ¸¹ º ö ³ ¸ »´³ Ù»¸» »¶´ Û á á ½  À ¼ À È ¼ ½Â ¿ ½ ¼ À ¼ ¼ È Å » ¸µ ¶ ´ ƹ´ º » ³ ¸ Ú¹´ Ì Á¶ ¸¶´ ¹ Á » ´ » » »³ »·¶ °§© ± « ª ÜÝ §© Þ¢ß à¡§ ¯©§ à £§ ¢ â± Û Õ ã É¿ ¼ Â Õ ¼ ¼ ½  ¼ À  À ¼ ½ ¼ À À ¼ ¼ ¾  ºº¹ ² ³´ ³ ¸´¹ º ¹· »µ¶ µ Ù ² ¹ ¹ ¶ º³ ¶ ´ » °§© ± « ä ¶ å³ »¹ ³ ¸ æ » »³ »·¶ ¹ ç Í ì Ò ÏÏÎ ½  À ¼ ½  ¿ ¼Õ é ¿À   À¼ È À ¼ ½ Ö Õ í ¿À ¼ ÀÈ Å » ¸µ ¶ ´ ƶ³ ¸ ʳ ¶ è ³ ¸ » å æÅ Æè ê ë µ¶ Á ³ Ô Ñ ÄÅ Ñ Ñ ³ µ ¶ º»¸¶ º´ ¹ µ³ »¹ Í ì Ò Î ÒÎ ¿À   À¼ ã  ¼ Õ ¼ ½ À¼  ¾  ½  À À í ¼ ¾ µ¶ Á ³ Ô Ñ ÄÅ Ñ Ë¶Ê ¶³ ¶µ Ù ¶ ƹ¹µ Ŷ ¶ ¹ Å »¸µ ¶ ³ µ ³ à »¸»¶´ ³´ º³ ¹ Ø Â¼ ¿¼½ É ½ ã ³ ù Ķµ »Ê³ ¸ Ê ¹¹ ¸ www.chadkids.org/epilepsyonline Epilepsy and Seizure Disorder: A Parent Resource Guide