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Seizures and epilepsy: creating a seizure action plan

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Seizures are temporary episodes of abnormal electrical activity in the brain. This abnormal electrical activity can lead to signs and symptoms that range from mild to severe, including an abnormal sensation or smell, brief staring, uncontrollable jerking of the limbs and periods of unconsciousness. Seizures most often indicate the presence of a brain disorder called epilepsy, but they can also occur without epilepsy in conditions such as high fever, severe sleep loss,  medications, drug or alcohol withdrawal and abnormal sodium or glucose levels in the blood.
If you or a loved one receives medical supervision for seizures or takes medication to manage seizures, it's important to have a seizure action plan in place­, even if your seizures are well-controlled. Keep reading to learn about the benefits of a seizure action plan, what yours should include and who should have access to it.

The benefits of having a seizure action plan

At SIU Medicine, we stand with the Epilepsy Foundation and other organizations in recommending seizure action plans for anyone who receives treatment for seizures. A seizure action plan is a simple yet detailed written document that offers enormous benefits to you, your loved ones and the people around you.
Seizure action plans are particularly beneficial because they:

  • Keep your important health information well-organized and easy to access
  • Help others stay calm and informed about what to do if you have a seizure in front of them
  • Help prevent seizure-related emergencies and ensure you receive faster care in the event that a seizure-related emergency does occur
  • Help your health care team accurately monitor your seizures and modify your treatment plan as needed
  • Help you and your loved ones feel prepared, so you can enjoy life more fully and participate in desired activities with less worry or concern!


Things to include in a seizure action plan

Your health care provider can help you develop an appropriate seizure action plan for you (or your loved one). Here are some important things you may want to include:

  • Your (or your child's) full name and date of birth
  • Your designated emergency contact information
  • A list of pertinent health care contacts, including primary care physician, epilepsy provider, preferred hospital and preferred pharmacy
  • A list of the medications you're currently taking (including name and dosage)
  • A list of known seizure triggers
  • A list of basic seizure first aid steps, which should include the following:
    • Stay calm
    • Time the seizure (or seizures)
    • Ensure scene safety: remove nearby harmful objects and protect the person's head and airway
    • Do not restrain the person nor put anything in their mouth
    • Put the person on their side if they are unconscious (if able to do so safely)
    • Stay with the person until their seizure is over or until emergency medical personnel arrive
  • A section for helpers to fill out details about the witnessed seizure activity, including:
    • Seizure type, if known
    • How long the seizure lasted
    • How many seizures occurred (e.g., cluster seizures)
    • What happened during the seizure (e.g., symptoms)
    • What triggered the seizure, if known
    • Type of rescue therapy administered, if applicable
    • Your response after the seizure (e.g., how long it takes for you to resume normal activities)
  • Information about when, whether and how helpers should administer rescue therapy (including the name of the medication and dosage)
  • Information about when and whether to call 911 (e.g., if a seizure with loss of consciousness lasts longer than 5 minutes, if there is no response to rescue medications, if serious injury occurs or is suspected, if trouble breathing is observed or suspected)
  • Any other special information or instructions that first responders and other helpers should know (e.g., special diet, whether there are any implantable devices)

Who should have access to my seizure action plan?

You should share your seizure action plan with anyone who is likely to be around you during or after a seizure episode. You may consider giving copies of your seizure action plan to:

  • Your family members or anyone who lives with you
  • Your or your child's educational team, including teachers, administrative staff, bus drivers, school nurses and athletic coaches
  • Your or your child's employer
  • Anyone you or your child spend a lot of time with (provided that you feel comfortable sharing this information with them), such as friends and colleagues

As you may know, seizures can happen anywhere and unexpectedly. So, it's important to carry a copy of your seizure action plan with you at all times, especially while traveling or while going out in public. Seizure action plans can also be adapted and modified depending on your given surroundings or situation.

Do you need help creating your seizure action plan?

If you or a loved one has seizures, it's important to be prepared. Contact SIU Medicine today to find a doctor who can help you take proactive steps toward a healthier, safer life.

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