Creating a seizure safety plan for home, school, and everyday life
Fact-checked by Even with the right care plan in place, your child with Lennox-Gastaut syndrome (LGS) will likely still experience seizures. Having a detailed, up-to-date seizure action plan — shared with all responsible adults who may be supervising — will help ensure your child receives appropriate care in any setting.
The LGS seizure safety plan should outline basic information about your child and seizures, how to respond to a seizure, and who to call. The goal is that all caregivers know exactly how to respond if your child has a seizure. It’s always important to work with your child’s neurologist to develop an individualized plan that accounts for your child’s specific needs.
Essential components of a seizure response plan
Your seizure safety plan should include all the information any adult supervising your child needs to quickly and appropriately respond to a seizure.
The LGS Foundation and other organizations provide templates for creating an individualized seizure action plan. Important information to have on the document includes:
- Basic information: The child’s name, age, diagnosis, and current treatments.
- Important contacts: How to reach parents/guardians and neurologists, and who to call first.
- Seizure description: The types of seizures the child usually has, and what they look like in real life, as well as how many typically occur in a day and how long they usually last.
- Triggers, patterns, and warning signs: Factors that are known to cause a seizure, and any warning signs that a seizure is on the horizon.
- Seizure first aid for LGS instructions: List of exactly what to do in the event of a seizure.
- Rescue medications: Detailed information on rescue medication names and doses, along with when these medicines should be given and who is authorized to administer them.
- Emergency instructions: When to call 911 or local emergency services.
- Seizure recovery instructions: What to do when the seizure ends.
Make sure to regularly review the plan and update it, in consultation with your child’s neurologist, when medications or seizure patterns change. The latest version should be distributed to anyone responsible for supervising your child.
Tailoring the plan for school
Make sure to give a copy of the seizure safety plan, signed by a neurologist, to your child’s school. You may want to tailor this version to be more specific to a school context, as this will make it easier for teachers and administrators to know how to respond. A school seizure action plan may include:
- what to do if a seizure happens in class, on the bus, during recess, or in the bathroom
- whether students should be moved to the nurse’s office or treated where they are if a seizure occurs
- who is responsible for calling parents, calling 911, and documenting the seizure, and who is authorized to administer rescue medication
- whether the student needs supervision in the bathroom, when using stairs, or during other high-risk activities
- if a child has any activity restrictions at school
- classroom modifications during seizure recovery, such as rest time, water, snacks, or a break from academics
Make sure to go over the plan in detail with your child’s teachers and school administrators. This will ensure they know exactly how to respond and gives them an opportunity to ask questions if anything about the LGS safety guidelines is unclear.
Safety on the playground
To avoid falls and injuries, your child with LGS may need closer supervision than peers at the playground, gym, or during sports activities. Guidance on the necessary precautions should be included in your seizure safety plan. This might include:
- a list of activities that are not safe for your child to participate in
- a list of activities that cannot be done without supervision
- required safety gear, such as a helmet
- a seizure protocol, including immediately stopping the activity, protecting the head, and following the rescue plan
Activities that may need to be restricted or heavily supervised include climbing, jumping, swimming, and those involving heights or hard, sharp surfaces.
Physical stress, fatigue, dehydration, and heat can be seizure triggers for some children. Make sure all adults who supervise your child’s play and sports know these triggers and when to take breaks.
Training others to administer rescue medications
Anyone who cares for your child should be trained to administer rescue medications. They will need to know:
- Medication basics: The name of the medication, dosing, route of administration, and where the medication is stored.
- Timing: How to recognize the seizure type and how long to wait before giving rescue medication.
- Positioning and safety: How to position the child during rescue treatment to help maintain an open airway.
- Documentation: How to document the time, seizure type, seizure duration, medication given, and response.
- Emergency response: When to call parents and emergency services.
When to call emergency services: Defining red flags
Your seizure safety plan should always include a clear list of red flags that warrant an immediate call to 911. You should work with your neurologist to develop this list, but reasons to call 911 may include:
- a seizure that has lasted longer than five minutes
- seizures that happen back to back without recovery of consciousness in between
- the child has difficulty breathing, turns blue or gray, or does not wake up normally
- the child is injured, sustains a hit tp the head, or has a seizure in water
- seizures continue or worsen despite rescue medication
Lennox-Gastaut 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.
