Seizure Action Planning for CDKL5

Does your loved one with epilepsy have a Seizure Action Plan in place? It's an important tool to ensure the safe and timely response to seizures and seizure emergencies!

On episode 8 of the CDKL5 in Color podcast we are talking seizure action planning and amplifying an awareness effort led by the Seizure Action Plan Coalition called "Seizure Action Plan Awareness Week."

Celebrated this year from February 10-17, Seizure Action Plan Awareness Week aims to educate patients, healthcare providers, and the general public about the importance of having a Seizure Action Plan.

What is Included in a Seizure Action Plan?

A Seizure Action Plan can be as individualized as necessary, but it generally includes:

• Basic identifying information (name, DOB)
• Emergency contact(s)
• A description of seizures (type, length, what happens)
• When to administer rescue medication and/or call 911
• Any after care or comfort care needed
• What seizure medications are taken regularly
• Other helpful medical information

A Seizure Action Plan can be created at home using one of the available templates on the coalition's website or it can be created in conjunction with a neurologist. This is likely what will be required for your child's school.

What Do I Do With the Plan Once it is Made?

You'll want anyone who has caregiving responsibilities for your child to be familiar with their Seizure Action Plan. That includes babysitters, nurses, school personnel, family members, and therapists. You'll also want to make sure the plan is accessible on your refrigerator with the other information you have prepared for first responders in case of emergency.

It is also appropriate to keep a copy in your purse, car, and in your child's backpack so it is always on hand.

Do you have questions about seizure action planning? Let us know! Chances are, we can help.

Until next time 💚

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Disclaimer: CDKL5 in Color (podcast, website, blog, text and visual content, social media, and other creative works) constitutes lived experience and is not intended as medical advice. Always consult your doctor.