Batten disease is a rare, progressive neurodegenerative disorder caused by mutations in genes providing instructions for proteins that remove waste products from cells. The buildup of waste products leads to cell death, especially in the brain, causing a range of symptoms that can begin from a very early age, depending on the type of Batten disease.

Symptoms can vary, but a common one is seizures that may become worse as the disease progresses. To help prepare for and cope with seizures, it is recommended that Batten disease patients have an emergency seizure management plan.

What is an emergency seizure management plan?

An emergency seizure management plan is a written document that can help alert caregivers and bystanders about the patient’s condition, as well as what to do in an emergency situation. It can help identify who the patient is, and who should be contacted in case of emergency.

Incorrect reactions to a person having a seizure may cause more harm than help, so this plan is essential to ensure no additional damage is done. For example, an individual having a seizure should not be restrained, and nothing should be placed in his or her mouth.

What should an emergency seizure management plan contain?

The plan should contain basic identifying information about the patient, such as his or her name and age, as well as emergency contact details.

The document should detail the types of seizures the patient has or may experience, how to recognize them, and what may trigger them. It should also include the doctor’s recommendations for emergency first aid, when to call an ambulance, and, crucially, what not to do. This allows any bystanders to more easily identify the seizure and react appropriately.

The plan should be developed in conjunction with professionals involved in caring for the patient, such as a doctor, nurse, or specialist, to ensure that any medical information or advice is correct.

There are several examples available online to help with the writing of an emergency seizure management plan, for example, from the Epilepsy Foundation, Epilepsy Action UK, and Epilepsy Action Australia.

How should a seizure management plan be used?

Ideally, a paper copy of the plan should be kept on the patient at all times. It should also be discussed with and distributed to common caregivers such as teachers and nurses at school or day care facilities.

The seizure management plan should be reviewed annually and kept up to date following any new events or after appointments with healthcare professionals. Any changes to the plan should be discussed with caregivers.

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Batten Disease 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.