Epilepsy and Tuberous Sclerosis

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Focuses on Epilepsy Management for poeple wth Tuberous Sclerosis. Includes information on: …

Focuses on Epilepsy Management for poeple wth Tuberous Sclerosis. Includes information on:
- Status Epilepticus
- Epilepsy Management
- First Aid Principles
- Seizure Management Planning

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  • 1.  
  • 2. Advances in Tuberous Sclerosis: From Pathway to Therapy Medical and Family Conference 3 – 4 November 2007 Sydney Children’s Hospital Randwick For more information: www.atss.org.au
  • 3. I want to show you how it feels to have a seizure Hannah Age 9 157-6/05
  • 4.
    • Confident living, despite seizures
    Vision
  • 5.
    • Epilepsy Action delivers innovative, high quality education and support services across Australia
    • to minimise the impact of epilepsy and other
    • seizure disorders.
    Mission
  • 6.
    • Information and Referral Service
    • Individual Service Programs
    • Professional Education Programs
    • Community Education Programs
    • Consultancy
    Services
  • 7. “ Epilepsy is the most common serious neurological disorder affecting an estimated 50 million people worldwide” (WHO) Epilepsy
  • 8.
    • 1-2% of Australians have epilepsy (ABS).
    • 5% of Australians will have a seizure during their lifetime (WHO ).
    • Approximately 80% of people with TSC will develop epilepsy
    Epilepsy
  • 9.
    • Epilepsy is a condition of recurrent, usually unprovoked, seizures often requiring medical management
    Epilepsy – What is it?
  • 10. 36% 14% 7% 23% 6% 3% 8% 3% Seizure types Seizure Types
  • 11. Seizure Classification Generalized Seizure involves whole brain & consciousness is affected Complex Altered awareness and behaviour Tonic Clonic “ grand-mal” or convulsion Atonic / Tonic “ drop attack” Myoclonic Sudden muscle jerks Absence “ petit mal” or staring fit Partial Seizure activity starts in one area of the brain Simple Retains awareness
  • 12. Secondary generalization (spreading from one area to the whole brain) Complex Altered awareness and behaviour Partial Seizure activity starts in one area of the brain Simple Retains awareness Seizure Classification
  • 13. Tonic Clonic “ grand-mal” or convulsion Atonic / Tonic “ drop attack” Myoclonic Sudden muscle jerks Absence “ petit mal” or staring fit Generalized Seizure involves whole brain & consciousness is affected Seizure Classification
  • 14.
    • Most Commonly associated with TSC
      • West Syndrome
      • Lennox Gastaut
    Epilepsy Syndromes
  • 15. Status Epilepticus “ Any seizure lasting for a duration of at least 30 minutes or longer from which a person does not regain consciousness” Appleton and Gibbs 1998
  • 16. Convulsive Status Epilepticus Easily recognised medical emergency requiring aggressive treatment
  • 17. Non-convulsive Status Epilepticus Subtle, under recognised, not considered to be life threatening Walker 2004
  • 18. Non-convulsive Status Epilepticus Simple partial status epilepticus Complex partial status epilepticus Absence status epilepticus Generalised myoclonic status
  • 19. Non-convulsive Status Epilepticus
    • Clinical indicators
        • Often subtle, long duration
        • Variation in responsiveness
        • Fluctuation in behaviour
        • Repetitive actions
        • Involuntary movements
        • Alteration in speech
  • 20. Non-convulsive Status Epilepticus
    • Treatment
        • Clinical diagnosis
        • EEG confirmation
        • Medicate
        • Monitor
  • 21. Epilepsy Management
    • Epilepsy diagnosis
    • Treatment options
        • Medication
        • Surgery
        • VNS
        • Ketogenic diet
        • Alternative therapies
    • Ongoing monitoring
  • 22. Taking control - What You Can Do
    • Knowledge
    • Working Partnerships
    • Accurate description
    • Seizure diary
    • First aid
    • ISP/SMP
    • Emergency medications
    • Peer support
  • 23. Taking control - Knowledge
    • Medical practitioner
    • Reputable websites
        • Major teaching hospital or university
        • Peak bodies
        • Professional body publications
        • Government organisations
    • Support organisations
        • National
        • International
    • Libraries
  • 24. Taking control - Working Partnerships
    • Medical practitioner
    • Allied health professionals
    • Early Intervention Unit
    • Teaching staff
    • Respite, day or accommodation service manager & staff
    • Employer
    • Recreational groups
  • 25. Taking control – Description
    • What was the person doing immediately prior to the seizure?
    • What called your attention to the seizure?
    • What did the person do during the seizure ?
  • 26. Taking control – Description
    • How long did the seizure last?
    • How did the person appear after the seizure ?
    • How long before the person became orientated and responsive?
    • Any memory of the event?
  • 27.
    • Protect from injury
    • Time seizure activity
    • Summon help
    Taking control - First Aid Principles
  • 28.
    • Complex Partial Seizures
      • Protect from injury
      • DO NOT restrain the person unless in danger
      • Time seizure activity
      • Reorientate
    Taking control - First Aid Principles
  • 29. Taking control - First Aid Principles
    • Tonic Clonic Seizures
      • Protect from injury
      • DO NOT restrain or put anything in mouth
      • Time seizure activity
      • Recovery position
      • Summon help
  • 30. Taking control - First Aid Principles
    • Tonic Clonic Seizure in Wheelchair
      • Brakes & seatbelt on
      • DO NOT tilt chair
      • If able, manage in wheelchair until jerking stops
      • If food, fluid or vomit in mouth, place on side immediately
  • 31. Taking control - First Aid Principles
    • Tonic Clonic Seizure in Water
      • Pool - support head and remove person after jerking stop
      • Surf - remove immediately
    • Assess ABC, place in recovery position
    • Always call ambulance
  • 32.
    • Call an ambulance if
      • Doubt
      • Injury
      • First seizure
      • Tonic clonic longer than 5 min
      • Complex partial longer than 15min
      • Another seizure quickly follows
    Taking control - First Aid Principles
  • 33.
    • Purpose
      • Assess risks
      • Documented plan of action
      • Easy identification of seizure activity
      • Step by step instructions
    Taking control – Seizure Management Planning
  • 34.  
  • 35. Emergency medications are used for the control of seizures that may occur in clusters, prolonged seizures or status epilepticus Taking control – Emergency Medication Training
  • 36. Taking control – Emergency Medication Training Indications Medical order Epilepsy awareness Training in administration Organisation require medication policy First Aid Certificate
  • 37.
    • Impact depends upon
      • Severity and frequency of seizures
      • Age of onset
      • Prior knowledge of epilepsy
      • Access to support services
    Taking control – Peer support
  • 38.
    • Consumer Consultation findings
      • Unmet needs
      • Unpredictability of seizures
      • Social isolation
      • Forced dependence
      • Impact on family and siblings
      • Medication
    Taking control – Peer support
  • 39.
    • Peer support programs
      • Family Camps
      • Youth Camps
      • Memory Workshops
      • Newly Diagnosed Groups
    Taking control – Peer support
  • 40. This is me having a seizure in the classroom. All these things are happening around me and I’m not registering. I’m off in my own little world Amanda 15yrs 156-6/05
  • 41. 1300 37 45 37
  • 42. Advances in Tuberous Sclerosis: From Pathway to Therapy Medical and Family Conference 3 – 4 November 2007 Sydney Children’s Hospital Randwick For more information: www.atss.org.au