Epilepsy and the Adolescent

1
Epilepsy and the Adolescent

• Sandya Tirupathi
• Epilepsy Fellow
• Beaumont Hospital

2
Epilepsy in adolescence

• Commonest neurological disorder.
• Prevalence 1 in 100 in 14-16yrs old
• About 75 of epilepsies- onset before 20yrs.
• Epilepsies syndromes
• Juvenile myoclonic epilepsy
• GTCS on awakening
• Symptomatic partial seizures (less frequently)

3
JME

• Lots of blanks and jerks then I had a grand
  mal I usually have fits when rushing after
  getting up usually does not happen later in the
  day
• .An extract from a patients diary

4
JME Clinical Characteristics

• Peak age of onset 12-18yrs
• Absences (33), onset10.53.4 yrs
• Myoclonic jerks (97), onset 153.5yrs
• GTCS (79), onset 163.5 yrs
• Seizures are usually after 30-60min of awakening
• Men and women equally affected
• Triggers sleep deprivation, stress, alcohol
  or menstruation
• Represents 2-5 of all patients with epilepsy.

5
JME EEG Characteristics

• An EEG showing interictal or ictal 3.5-6hz
  multispike and wave.
• EEG Photosensitivity is common (27-41) but
  1/10 experience clinical photosensitivity.
• HV accentuates the abnormalities in all patients.

6
JME Asymmetries

• Asymmetries are common
• Clinical only (14)
• EEG only (14)
• Both clinical and EEG asymmetries (2)
• Focal abnormalities are common
• 54 had focal clinical or EEG or both.
• Lancman ME et al, Epilepsia 1994
  Mar-Apr35(2)302-6
• Usui et al, Epilepsia, 2005
  46(10)1668-1676

7
JME Misdiagnosis (90)

• Factors contributing
• Physician failure to inquire about early morning
  myoclonus.
• Misinterpretation of absences as complex partial
  seizures
• Misinterpretation of jerks as partial motor
  seizures
• High prevalence of focal clinical and EEG
  abnormalities.
• Panayiotopoulos CP et al, Epilepsia 1991
  32672-676

8
Management

• Long term AED and avoidance of precipitating
  factors is essential.
• Advice on alcohol and sleep deprivation is
  mandatory.
• Valproate, Lamotrigine, Topiramate, Clonazepam,
  Levetiracetam, Zonisamide potentially
  effective.
• CBZ, Vigabatrin, Tiagabine and Phenytoin are
  potentially aggravating- avoided
• Relapse when AED is withdrawn is gt90

9
Adolescence

• Adolescence is a transitional stage involving
  biological (i.e. pubertal), social, and
  psychological changes.
• WHO10-20 years
• USA 13-23years
• End of adolescence and beginning of adulthood
  varies by country as well by function.

10
Adolescence time for bodily changes
11
..Time for constant battles
12
Adolescent with Epilepsy

• Challenges
• Uncertainty of seizure timing
• Side effects of medications
• Associated educational difficulties
• Parental tendency toward overprotection
• Face restrictions and fight for freedom
• Social stigma

13
Adolescent Issues

• 1. Medical Issues
• 2. Educational and Employment issues
• 3. Social issues and restrictions
• 4. Transition/transfer of care issues.

14
Medical Issues Establishing diagnosis

• Provide a final screen to confirm (or refute)
  diagnosis of epilepsy, to corroborate, or
  correctly identify, the epilepsy syndrome and to
  ensure that the most appropriate AED is being
  prescribed.
• Many paroxysmal events are non epileptic and it
  is not uncommon to be mistakenly diagnosed as
  having epilepsy and treated with AEDs.
• Patients with TLE associated with Hippocampal
  sclerosis present often in late childhood or
  adolescence- appropriate neuroimaging.

15
Medical Issues Ensuring most appropriate
treatment

• Review AED regimen and consider all possible side
  effects.
• Delaying Surgery until adult life denies
  possibility of growing up in a seizure free
  environment which compromises emotional and
  employment potentials.
• Consider cosmetic side effects as body image and
  peer acceptance are key issues in their lives.
• Consider AED and OCP interactions.
• Counsel on the teratogenic effects of AEDs
• Folic acid supplementation

16
Medical issues Compliance

• 50 of teenagers with chronic diseases do not
  comply with care.
• 20 - fully complied, 44- satisfactory
  compliance and 34 -poor compliance
• Compliance with recommended life-style was
  poorest.
• Compliance with health regimens of adolescents
  with epilepsy
• Kyngas, H. Seizure 2000 9598-604

17
Predictors of compliance in epilepsy

• Physician support complied 10.56-fold
• Parent support- complied 10.47-fold
• Good motivation complied 9.77 times
• Adolescents who did not feel their disease was a
  threat to social well-being complied 8.38-fold
• Predictors of good compliance in adolescents with
  epilepsy.
• Kyngas, H. Seizure 200110549-553

18
2. Educational and Employment issues

• At risk for failing to reach their goals.
• Cognitive dysfunction
• Side effects of AEDs
• Family stress
• Lack of school support
• Employer discrimination

19
Education and Employment

• What can/may help
• Educational assessment in elementary school years
  
• Education and counselling of families.
• Epilepsy education as part of syllabus of
  teacher- training curriculum.
• Minimise side effects from AEDs and treat
  comorbidities
• Programs like Training for Success
• Fighting employer discrimination through local
  epilepsy societies.

20
3. Social issues

• Social difficulties-Result from
• Cognitive abnormalities
• Adverse experiences
• Social stigma
• Parental psychopathology ( gt32 -depression)
• Patient psychopathology (28.6 vs 6.6)
• Physicians failure to recognise and promote
  patient autonomy.
• Hoare P. Dev Med child Neurol 19842614-9
• Rutter M, William Heinemann Medical 1970

21
.. Social Issues

• What can/may help
• Activities promoting friendships
• Decision making- to shift to teenagers
• Physician to encourage autonomy
• Early recognition of parental psychopathology and
  early intervention of family dynamics by
  neuropsychologist
• Early recognition and treatment of patient
  psychopathology

22
..Social Restrictions
23
..Social Issues Restrictions freedom

• Sports
• Most are acceptable- builds self esteem
• Driving
• rite of passage.
• Early discussion of regulations may promote
  compliance.
• Alcohol
• Balanced discussion vs outright proscription-
  promoting normal peer group socialising.
• Recreational drugs
• Cocaine, heroin, amphetamine, ecstasy,
  phencyclidine
• are proconvulsants.

24
4.Who should look after the teenager with
epilepsy?

• Physicians with particular interest in
  adolescents should ideally treat them
• Where specialist involvement is strictly defined
  by age Transition clinics staffed by both
  Paediatric and Adult specialists may permit to
  address their special needs

25
Paediatric Adult Cultures
Adolescent

• Family Concerns
• Development
• Growth
• Growing Independence
• Adult behaviour
• Reproduction and
• Employment

• Family Concerns
• Development
• Growth
• Patient Autonomy
• Reproduction
• Employment
• Recreation

26
Why transition and not transfer

• To address inherent problems of the teenage
  population
• To avoid transfers of a haphazard and
  idiosyncratic fashion.
• To prepare the child to take on responsibilities
  in a graded way.
• To instil a sense of security and confidence
  amongst parents and families.

27
Obstacles to a smooth transfer

• Problems with coming of age
• Problems with paediatric professionals
• Problems with parents
• Problems with receiving adult services
• Structural hospital problems
• Russel Viner Arch Dis Child 199981271-275
  Transition
• from Paediatric to adult care- Bridging the gap
  or passing the buck

28
Problems with Adolescence

• Transition is a life event- losing respected and
  loved carers and being forced to trust unknown
  carers.
• Non-adherence and oppositional behaviour may
  prompt abrupt transfers to adult care.
• Some make contact with medical profession again
  in times of emergency, crises that regular
  contact, health promotion and education might
  have avoided (pregnancy, suicide attempts)

29
Obstacles from paediatric professionals

• Inability of the paediatric professionals to Let
  go
• Inability to trust the independence of the
  adolescent
• Inability to trust the skills of the adult
  services.
• This is especially true if there is no contact
  with target adult services.

30
Obstacles from adult services

• Individual rather than family approach of adult
  physicians can be threatening to young people and
  families. Families often remain the strongest
  support and this approach may sabotage effective
  transition if they feel excluded from all
  decision making in new setting.
• Adult physicians can be tempted to embark on
  extensive investigations and management
  reassessments soon after the first meeting this
  can be unsettling for families and patients.

31
Obstacles from the hospital system

• Poorly established and unreliable communication
  channels for transfer of old medical records and
  imaging results between hospitals.
• During the transition period neither the
  paediatric nor adult services may feel fully
  responsible for patient care resulting in
  miscommunication, contradictory advice and
  potential conflict.
• If a period of limbo occurs, patient may take the
  opportunity to opt out of both systems.

32
Worldwide

• N America and Australia In the past 2 decades
  lead to rise of Adolescent Medicine
• In Most parts specialists treat both children
  and adults with epilepsy (specialist involvement
  not defined by age)
• UK- Transition Clinics Hand held transfers

33
Managing the teenager with epilepsy
Paediatric to adult care

• 1991 a clinic for teenager with epilepsy.
• Clinic Consultant paediatric neurologist, adult
  neurologist and a nurse specialist in paediatric
  epilepsy. (SR in absence of PN or AN but not
  both)
• Referrals from 2 PN, Gen Paeds, rarely GPs.
• Each patient was seen by all 3 jointly.
• R.E.Appleton, D.Chadwick A.Sweeney. Seizure
  1997627-30

34
ResultsR.E.Appleton, D.Chadwick A.Sweeney.
Seizure 1997627-30

• 120 new patients. 63 males.
• Referral age ranged from 12.8 to 21(16.3)
• 64 PN, 33 from Gen P, 3 GPs
• 116- diagnosis of epilepsy- PNs Gen Ps
• Remaining 4 2 new onset epilepsy at 16 years and
  2 recurrence of szs following stability (GPs)
• 58 - PGE including JME (45),
• 22 - LRE (Cryptogenic)
• 18 - symp/cyrptogenic gen syndrome
• 2- 2 brothers had PME of unknown cause.

35
.Did the clinic make a difference?

• 18(15) patients had diagnosis revised. 15 had
  been ref by gen Ps and 3 by a PN.
• Vasovagal in 8, panic attacks in 2, hemiplegic
  migraine in 1, paroxysmal CA in 1 all 12 were
  on AEDs
• NES in 1( she also had well controlled epilepsy)
• A different syndrome was identified in remaining
  6. 4 with JME- all referred by a Gen P.

36
.Changes to therapy

• Following initial consultation 14 patients had
  meds changed and in 12 gradually stopped.
• 85 were on monotherapy ( from 80)
• No one was on more than 2 AEDs in most recent f/u
  and none on phenytoin.(8 were on 3 AEDs at
  referral)
• 3 were undergoing surgical evaluation.

37
Issues and concerns raised by teenagers

• Education and career choices/opportunities (60)
• s/e and possibilities of withdrawal of AEDs (33)
• Driving risks and regulations (30)
• Leisure activities and alcohol use (20)
• Contraception, pregnancy and inheritance (14)
• Epilepsy surgery (2)
• Clinic team also offered teenagers opportunity to
  attend informal
• meetings outside hospital and at weekends. Forum
  for sharing
• ideas, concerns and socialising

38
2007 survey of the transition clinics in epilepsy
in GB and NI

• 11 centres 6 in Adult services and
• 5 in paediatric unit
• 10 staffed with AN and PN.
• 1 Nurses led
• 6 ANS PNS
• 2 have ANS only
• 2 No nurse support
• Results presented at ILAE in Southhampton, 2007

39
Survey results

• Frequency of clinics 3-12 (4-6 mostly)
• 2 F/U patients only (6-12)
• 2 Only new patients (5-6)
• Rest New F/u patients (66)
• New Patients Min Age 11yrs (Av15-16)
• Max Age 20yrs (mostlt19)
• 8 will see all plus 2 have special clinics for
  severe LD
• GP referral accepted in 4/11.

40
What about here??

• Aim for a co-ordinated transfer process
• A policy on timing of transfer
• A preparation programme and education programme
• See teenagers on their own from 13years (with
  parents invited to join session later)
• Uninterrupted and accessible care
• Information on how to seek help and how to
  operate within the medical system.
• Hope! Adolescent Unit in
• National Epilepsy Centre

41
Start at 11-13yrs.(depending on developmental
readiness) Review young persons knowledge know
the diagnosis? Discuss AED therapy side effects
Pubertal changes
At 13-14 See them on their own for part of
consultation. Discuss professional and
recreational restrictions Encourage independence
all of above
At 14-15 See them on their own. Discuss sexual
health, Folicacid contraception in girls,
educational and career options, educate
on teratogenic effects of AEDs. Information on
how to seek help operate within the medical
system all of above

• By 16years should be seen by the Adult
  neurologist. If growth
• not complete ideal to overlap between paediatric
  and adult services
• until development satisfactory. Reinforce all
  above issues.

42
Comments from clinic patients

• Transfer process was incredibly slow and
  dreadful waiting for 2 years.
• .not knowing who to turn to when his seizures
  really were at its worst
• I was dismissed from the childrens hospital as
  they felt I was too big for them
• food for thought..

43
Final Thought .. Transition years

• These are the years that young people change
  into whoever they are going to be for the rest of
  their lives
• .lets get the change
  right for them..

44

• Thank you