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Toolkit for Families of Children with Special Healthcare Needs - Epilepsy

Tool 1: Seizure Action Plan

As the mother of a child with epilepsy, I know that I am my daughter's best advocate and that through years of experience I have a certain knowledge of how she is best cared for, particularly when she has a seizure. I've worked over the years in collaboration with her professional caregivers so that her every need is met. I have found that writing things down is the best way to ensure that if she was to have a seizure and I wasn't around, those who are taking care of her will respond in the best possible way. At NICHQ, I served as the Parent Co-Chair with teams from across the country, working to improve the quality of care that our children with epilepsy and other special healthcare needs received. Each team worked on and produced what we came to call a Seizure Action Plan. The Seizure Action Plan is a one-page document with clear and concise instructions, personalized for your child, that can be given to schools, daycare centers, babysitters and family members so that they are prepared to care for your child with epilepsy in the event of a seizure.

Here are a few examples of the Seizure Action Plans that we found particularly helpful: 


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