Skip to content
How It Works
Explore
Resources Ask a Question
Who It's For
Patients
Decode results, prep for appointments, weigh options.
Caregivers & advocates
Carry the research load for someone you love.
Providers & clinicians
Resources for patients in your practice.
Log In Ask a Question
PubMed This is a summary of 18 peer-reviewed journal articles Updated
Neurology

Building Your Care Team and Staying Safe

At a Glance

Managing Lennox-Gastaut syndrome requires a multi-specialty care team led by an epileptologist at a Level 4 Epilepsy Center. Caregivers should prioritize daily safety by using protective helmets to prevent drop attack injuries, maintaining a written Seizure Action Plan, and securing school accommodations.

Managing Lennox-Gastaut Syndrome (LGS) is a marathon that requires a specialized support system. Because the condition is rare and impacts almost every part of a person’s life—from how they move to how they learn—you need more than just a general neurologist. You need a team that can address the whole person [1][2].

Building Your Multi-Specialty Team

A comprehensive LGS care team should ideally include several specialists who work together [1][3]:

  • Epileptologist: A neurologist with advanced training in complex, drug-resistant epilepsy [4][5].
  • Neuropsychologist: Helps track how LGS affects learning and behavior, which is vital for school planning [6][7].
  • Epilepsy Dietitian: Essential if using the ketogenic or modified Atkins diet [3].
  • Functional Neurosurgeon: A specialist who performs procedures like VNS or corpus callosotomy [8][9].
  • Social Worker or Care Coordinator: Helps navigate the healthcare system and connects you with disability resources [10][11].

Experts recommend that LGS patients be evaluated at a Level 4 Epilepsy Center, which provides the highest level of comprehensive care and advanced monitoring [7][12].

Daily Safety and Fall Prevention

Because drop attacks (sudden falls) are a hallmark of LGS, safety is the top priority in your home and daily life [13][14].

  • Protective Helmets: Many individuals with LGS wear specialized epilepsy helmets to prevent head injuries from sudden tonic or atonic seizures [13][15].
  • Home Modifications: Consider padding sharp corners of furniture, using carpets or soft flooring, and installing safety gates near stairs [13].
  • Know the Triggers: Identify common triggers, such as missed sleep, fevers or illness, and missed medication doses, to help prevent breakthrough seizures [1].

Seizure First Aid and Action Plans

Every caregiver needs a written Seizure Action Plan (SAP). This document describes the typical seizures and outlines what to do in an emergency [16][17].

Basic Seizure First Aid:

  1. Time it: Look at the clock when the seizure starts.
  2. Protect the airway: Roll the person gently onto their side to keep their airway clear.
  3. Clear hazards: Move hard or sharp objects away.
  4. Do NOT intervene: Never put anything in their mouth, and do not hold them down [16].

Rescue Medications: If a seizure lasts too long (often over 5 minutes) or occurs in clusters, your SAP will instruct you to use a rescue medication. These are typically fast-acting medications delivered in ways that don’t require swallowing, such as nasal sprays (e.g., midazolam) or rectal gels (e.g., diazepam) [16][17].

Preparing for the Specialist Visit

When you visit an epileptologist, you are the expert on your loved one. Bring the following to help the doctor make the best decisions [6][7]:

  1. Video Recordings: Use your phone to record different seizure types. A video is often more helpful than a verbal description [7].
  2. Seizure Log: Keep a simple diary of the date, time, and type of seizures [7].
  3. Past Records: Bring copies of previous EEG reports, MRI discs, and a list of every medication (including dosages) ever tried.

Advocacy in School (IEP)

LGS is a “hidden” disability because seizures like atypical absences may just look like the child is daydreaming [18]. An Individualized Education Program (IEP) should include a copy of the Seizure Action Plan, nursing support for administering rescue medications, and accommodations for “post-ictal” periods (the time after a seizure when a child is confused or sleepy) [1][2].

Common questions in this guide

What specialists should be on my LGS care team?
A comprehensive care team for Lennox-Gastaut syndrome should include an epileptologist, a neuropsychologist, an epilepsy dietitian, a functional neurosurgeon, and a social worker or care coordinator. It is highly recommended to seek evaluation at a Level 4 Epilepsy Center.
How can I prevent injuries from LGS drop attacks at home?
You can reduce injury risk by having your loved one wear a specialized epilepsy helmet to protect against sudden tonic or atonic seizures. Additionally, modify your home by padding sharp furniture corners, installing soft flooring or carpets, and using safety gates near stairs.
What should I include in a Seizure Action Plan for LGS?
Your Seizure Action Plan should describe your loved one's typical seizures and outline basic emergency first aid steps. It must also include specific instructions on exactly when and how to administer rescue medications, such as nasal sprays or rectal gels, during prolonged or cluster seizures.
What should I bring to an epileptologist appointment for LGS?
Bring video recordings of the different seizure types captured on your phone, along with a detailed daily seizure log. You should also bring copies of previous EEG reports, MRI discs, and a complete list of every medication and dosage ever tried.
How can a school IEP help a child with Lennox-Gastaut syndrome?
An Individualized Education Program (IEP) can incorporate a Seizure Action Plan and arrange nursing support to administer rescue medications. It also ensures the school provides necessary accommodations for both learning difficulties and the post-seizure recovery periods.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Does our current medical center meet the criteria for a National Association of Epilepsy Centers (NAEC) 'Level 4' designation?
  2. 2.Can you provide a written Seizure Action Plan that clearly defines exactly when we should use rescue medications like nasal midazolam?
  3. 3.How much experience does the surgical team have with corpus callosotomy and VNS specifically in LGS patients?
  4. 4.Which specific neuropsychological tests should we perform to get a baseline for the IEP and school support?
  5. 5.Can you refer us to a social worker or care coordinator who understands the long-term needs of families with LGS?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (18)
  1. 1

    Management of Lennox-Gastaut syndrome beyond childhood: A comprehensive review.

    Samanta D

    Epilepsy & behavior : E&B 2021; (114(Pt A)):107612 doi:10.1016/j.yebeh.2020.107612.

    PMID: 33243685
  2. 2

    Lennox-Gastaut syndrome: Comorbidities and clinical implications.

    Pino AF, Naik S, Erdemir G

    Seminars in pediatric neurology 2025; (56()):101239 doi:10.1016/j.spen.2025.101239.

    PMID: 41371878
  3. 3

    Cognitive and behavioral impact of antiseizure medications, neuromodulation, ketogenic diet, and surgery in Lennox-Gastaut syndrome: A comprehensive review.

    Samanta D

    Epilepsy & behavior : E&B 2025; (164()):110272 doi:10.1016/j.yebeh.2025.110272.

    PMID: 39854829
  4. 4

    Interrater reliability of interictal EEG waveforms in Lennox-Gastaut Syndrome.

    Hu DK, Rana M, Adams DJ, et al.

    Epilepsia open 2024; (9(1)):176-186 doi:10.1002/epi4.12858.

    PMID: 37920928
  5. 5

    Understanding the Burden of Lennox-Gastaut Syndrome: Implications for Patients, Caregivers, and Society in High and Low Resource Settings: A Narrative Review.

    Mourid MR, Oduoye MO

    Health science reports 2024; (7(12)):e70169 doi:10.1002/hsr2.70169.

    PMID: 39669191
  6. 6

    Applying the ILAE diagnostic criteria for Lennox-Gastaut syndrome in the real-world setting: A multicenter retrospective cohort study.

    Nightscales R, Chen Z, Barnard S, et al.

    Epilepsia open 2024; (9(2)):602-612 doi:10.1002/epi4.12894.

    PMID: 38135919
  7. 7

    Current practices and trends in surgical decision-making for children with Lennox-Gastaut syndrome: A cross-sectional survey by the Pediatric Epilepsy Research Consortium.

    Chiu MY, Keator CG, Warren AEL, et al.

    Epilepsia open 2025; (10(6)):1835-1846 doi:10.1002/epi4.70144.

    PMID: 40965114
  8. 8

    Epilepsy Surgery is a Viable Treatment for Lennox Gastaut Syndrome.

    Keator CG

    Seminars in pediatric neurology 2021; (38()):100894 doi:10.1016/j.spen.2021.100894.

    PMID: 34183143
  9. 9

    The impact of sub specialization within functional neurosurgery on patient outcomes in a comprehensive epilepsy center.

    Clark AJ, Samuel R, Saez I, et al.

    Clinical neurology and neurosurgery 2021; (205()):106636 doi:10.1016/j.clineuro.2021.106636.

    PMID: 33984798
  10. 10

    Development of the transition-age program (TAP): Review of a pilot psychosocial multidisciplinary transition program in a Level 4 epilepsy center.

    Reger KL, Hughes-Scalise A, O'Connor MA

    Epilepsy & behavior : E&B 2018; (89()):153-158 doi:10.1016/j.yebeh.2018.10.021.

    PMID: 30415138
  11. 11

    Neuropsychology Within a Tertiary Care Epilepsy Center.

    Morrison CE, MacAllister WS, Barr WB

    Archives of clinical neuropsychology : the official journal of the National Academy of Neuropsychologists 2018; (33(3)):354-364 doi:10.1093/arclin/acx134.

    PMID: 29718083
  12. 12

    Saudi Arabian Consensus Statement on Vagus Nerve Stimulation for Refractory Epilepsy.

    Alqadi K, Aldhalaan H, Alghamdi A, et al.

    Saudi journal of medicine & medical sciences 2021; (9(1)):75-81 doi:10.4103/sjmms.sjmms_578_19.

    PMID: 33519349
  13. 13

    Cannabidiol in patients with seizures associated with Lennox-Gastaut syndrome (GWPCARE4): a randomised, double-blind, placebo-controlled phase 3 trial.

    Thiele EA, Marsh ED, French JA, et al.

    Lancet (London, England) 2018; (391(10125)):1085-1096 doi:10.1016/S0140-6736(18)30136-3.

    PMID: 29395273
  14. 14

    Current and emerging pharmacotherapy for the treatment of Lennox-Gastaut syndrome.

    Besag FMC, Vasey MJ, Chin RFM

    Expert opinion on pharmacotherapy 2023; (24(11)):1249-1268 doi:10.1080/14656566.2023.2215924.

    PMID: 37212330
  15. 15

    Unraveling Lennox-Gastaut Syndrome: From Molecular Pathogenesis to Precision Diagnosis and Targeted Therapy Evolving Therapeutic Strategies.

    Na JH, Lee YM

    International journal of molecular sciences 2026; (27(3)) doi:10.3390/ijms27031382.

    PMID: 41683806
  16. 16

    Antiseizure medications for Lennox-Gastaut Syndrome: Comprehensive review and proposed consensus treatment algorithm.

    Samanta D, Bhalla S, Bhatia S, et al.

    Epilepsy & behavior : E&B 2025; (164()):110261 doi:10.1016/j.yebeh.2024.110261.

    PMID: 39854828
  17. 17

    Current and emerging pharmacotherapies in Lennox-Gastaut syndrome.

    Samanta D, Nath M

    Expert opinion on pharmacotherapy 2025; (26(10)):1133-1147 doi:10.1080/14656566.2025.2516630.

    PMID: 40468679
  18. 18

    Evolution and course of early life developmental encephalopathic epilepsies: Focus on Lennox-Gastaut syndrome.

    Berg AT, Levy SR, Testa FM

    Epilepsia 2018; (59(11)):2096-2105 doi:10.1111/epi.14569.

    PMID: 30255934

This page offers educational information on managing the daily life and safety of a person with Lennox-Gastaut syndrome. It does not replace professional medical advice from your epileptologist or neurology team.

Get notified when new evidence is published on Lennox-Gastaut syndrome.

We monitor PubMed for new peer-reviewed studies on this topic and email a short summary when something meaningful changes.