Seizure Action Plan for Angelman Syndrome

Seizures are common to Angelman syndrome, with some form of epilepsy found in more than 90% of these patients. To ensure that your child receives appropriate care during and after a seizure, it is important to have a seizure action plan handy.

Here is information about seizure action plans, why they are important, how to create one, and who should have a copy.

What is a seizure action plan?

A seizure action plan is a document explaining steps to take to best manage a seizure. It also contains information about medications your child may need, previous types of seizures and how they are managed, and who to contact in an emergency.

How can it help?

A seizure action plan helps to ensure that your child received quick and appropriate care in case of a seizure.

Having an action plan can also help you feel more comfortable, and allow your child to participate more in activities and be more engaged while outside your care — likely increasing both your and your child’s sense of well-being and quality of life.

What should a seizure action plan include?

The plan should include your child’s name, address, contact information for you and your child’s physician. aDetails of previous seizures experienced, including how long they typically last, and what steps to take to assist the child in getting thorugh the seizure and recovering are also essential.

Information about medications your child is taking, and known allergies, are important to include to assist medical personnel in the event of an emergency.

Information about possible seizure triggers can also be helpful.

Seizures that last for five or more more minutes, occur consecutively — one after another — without a person regaining consciousness, are accompanied by difficulties breathing, or take place in water or cause injury are considered emergencies and emergency medical help should be requested (dialing 911, say, in the U.S., or 112 across Europe and in a number of other countries). Not all seizures, however, are medical emergencies.

Who should get a copy?

It is important that the plan is easily accessible to any adult who may be responsible for your child’s well being in the event of a seizure.

If your child attends school or daycare, it is important that school administrators, the school nurse, and teachers that interact with your child have access to copies of the plan. This can ensure that they know what to watch for in terms of seizure triggers, and how best to respond to a seizure and handle care afterward, like recording details of the seizure and staying with a child until he or she is fully conscious and responsive.

Regular caregivers should have copies of the plan.

You should always keep a copy of your seizure action plan with you — in a purse, wallet or backpack — so you can provide it to emergency personnel if necessary.

Storing a copy in a central location in your house is also a good idea, ensuring easy access.

How do I get started?

To create a seizure action plan, first gather as much of the information needed as possible. Then you can begin to draft the plan.

There are a number of different templates available online, including electronic and print forms. The Epilepsy Foundation, for example, offers this form to fill out, while the Epilepsy Association of Western and Central Pennsylvania makes this one available.

If you have any questions or uncertainties as you go through the form, ask your doctor or healthcare team for guidance. Jot down questions you have, and bring them along to a next doctor’s appointment.

Be sure to show the completed document to your physician, and ask for him or her to review it carefully, making sure there are no errors in the medical information provided.

After the document is complete, give a copy to everyone who might need it.

Review the plan at least once a year, and update it whenever your child’s symptoms or medications change, or you change healthcare providers.

Last updated: Feb. 22, 2021

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Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.