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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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  • Transcript

    • 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