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SUDEP and Safety


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Tom Stanton from the Danny Did Foundation discusses SUDEP, sudden unexpected death in epilepsy, and safety devices currently available

Published in: Health & Medicine
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SUDEP and Safety

  1. 1. Risks in Epilepsy: Understanding Sudden Death and Advancing SUDEP Awareness Tom Stanton ⎪Danny Did Foundation ⎪
  2. 2. Danny Stanton’s Story
  3. 3. Danny’s New Place in the World: Danny Did Foundation Protecting Kids With Epilepsy.
  4. 4. Safety in Epilepsy: Communication is the Key
  5. 5. The Risk of Sudden Death: - What is SUDEP? -What causes SUDEP? -How often does it happen?
  6. 6. Risk Factors for SUDEP: -Uncontrolled seizure activity -Habitual tonic clonic seizures -Key: Learn your tailored risk level
  7. 7. How to Minimize the SUDEP Risk: -Talk with your doctor -Work toward better seizure control -Track your seizure activity -Consider alternative treatments
  8. 8. Technology and Devices: Another resource in your toolkit
  9. 9. Considering a Device? 5 Things to Think About
  10. 10. Examples of Device Systems: Visit our to learn about specific products
  11. 11. Considering a Device? How to talk with your doctor
  12. 12. Advocate Community: Ongoing SUDEP Initiatives
  13. 13. Research to Know About
  14. 14. We Need You! There has been progress. With your help, we can gain more.
  15. 15. Questions?
  16. 16. It is important that you are the voice for your child. You know them best.
  17. 17. Joey loves music. Music is a like and preference that is used as a tool to teach and differentiate Joey’s instruction.
  18. 18. The PLEP is the narrative section that speaks directly to academic, social, physical and management needs…..You have a voice here. This is where you can best share your child…..
  19. 19. This is Joey…so happy to hear he is going to see his big brother. He is playing with his musical toy that gives letter sound correspondence….from his big bother.
  20. 20. LGS doesn’t stop our children from loving physical activities and interactive and physical ways of learning… means adaptations. These are expected and necessary in the school setting. They are responsible for making that happen.
  21. 21. No matter where you live, the family is the driving force behind your child’s education. You are the primary person who has a say….always ask for support when you need it. Its your child’s right to a fair and free education.
  22. 22. Share with the school what makes your child happy. LGS individuals don’t love being “seizure sick” but they do love life and school when it meets their needs…
  23. 23. Joey is a kid….a teen. He is in many ways like every other child….
  24. 24. It is important we help the school and educators understand physical and medical challenges…not just academic challenges.
  25. 25. Just remember the teacher does know your child best and loves your child…that is why they do what they do, but your voice, your concern, your knowledge only helps the teacher advocate if you communicate and share life at home….especially meds….so important. They don’t know what they aren’t told