What to do next when your child has been diagnosed with Lennox-Gastaut syndrome

Top resources for finding accurate medical information on Lennox-Gastaut syndrome

Resources written for the general public

• Genetic and Rare Diseases Information Center: Lennox-Gastaut Syndrome
• MedlinePlus List of Genetic Conditions: Lennox-Gastaut Syndrome
• National Organization for Rare Disorders (NORD) Rare Disease Database: Lennox-Gastaut Syndrome

Science-heavy resources targeted at clinicians:

• National Library of Medicine StatPearls: Lennox-Gastaut Syndrome
• OMIM Online Catalog of Human Genes and Genetic Disorders

What causes Lennox-Gastaut syndrome?

Lennox-Gastaut has many possible causes. Most children with LGS develop the condition because of an existing neurological problem. These can include brain malformations, injuries that occurred before or during birth, problems with blood flow to the developing brain, or infections affecting the central nervous system. Many children have a history of infantile spasms before developing LGS, though why those conditions evolve into LGS is not fully understood.

LGS likely has a genetic component, though scientists are still learning about how this manifests. Genetic changes (variants) in several genes have been identified in some individuals with Lennox-Gastaut syndrome, including SCN1A, SCN8A, CHD2, FOXG1, STXBP1, GABRB3, ALG13, and DNM1. These genes are involved in how nerve cells communicate in the brain. LGS can also occur as part of a broader genetic condition, such as tuberous sclerosis complex.

Most cases of LGS are sporadic, meaning that they happen due to random chance and are not passed down in families. However, some children with LGS have family members with some form of epilepsy, suggesting that inherited genetic factors may play a role in some cases. In around 40% of cases, no identifiable cause can be found after thorough evaluation, but scientists are actively working in this area.

Should I get a second opinion for a Lennox-Gastaut syndrome diagnosis?

Rare diseases require specialized expertise. Consider seeking a second opinion from a physician who focuses specifically on epilepsy like a pediatric epileptologist. A fresh perspective can confirm the diagnosis, reveal additional treatment options, or simply provide reassurance about your care plan.

For many rare diseases, it can be hard to find a specialist with relevant experience. You can try asking providers you have seen, referring to community resources (see Section 5 below), or consulting a genetic counselor. The LGS Foundation maintains a physician directory as does the Epilepsy Foundation, which may also be useful starting points for finding experienced specialists.

What does a genetic counselor do when my family has received a Lennox-Gastaut syndrome diagnosis?

Certified Genetic Counselors have completed a program of study focused on understanding and providing information about genetic disorders. 

Given the complex genetics of Lennox-Gastaut syndrome, a genetic counselor can be a valuable member of your child's care team. A genetic counselor can help you understand what genetic testing has been done (or should be done), what any identified variants mean, and if there are implications for other family members. 

Genetic counseling can take place in person or in a telemedicine visit. The National Society of Genetic Counselors offers a tool for finding a genetic counselor.

Should other family members undergo genetic testing for Lennox-Gastaut syndrome?

Because LGS most often arises from new (de novo) genetic changes rather than inherited ones, the risk for siblings or other relatives is usually very low. However, the answer depends on whether a specific genetic cause has been identified for your child.

If a genetic variant has been found in your child, your genetic counselor can advise whether testing is recommended for parents, siblings, or other relatives. If no genetic cause has been identified, the picture is less clear, and a genetic counselor can help you think through next steps.

What symptoms should we monitor for Lennox-Gastaut syndrome? 

• Children with LGS can experience several different seizure types. Which ones are present and how often they occur varies from child to child. The most common are tonic seizures (sudden muscle stiffening, often during sleep), atonic or "drop" seizures (a sudden loss of muscle tone that causes the child to fall), and atypical absence seizures (brief staring spells with a gradual rather than abrupt start and end). Tonic-clonic, myoclonic, and focal seizures are also seen in some children. 
• Children with LGS commonly have intellectual disability, developmental delays, and behavioral or psychiatric challenges such as hyperactivity, aggression, or autistic features.

What is the expected progression of Lennox-Gastaut syndrome?

• LGS is a lifelong condition, and complete seizure freedom is rare. Seizure types and frequency can shift over time.
• Many children experience some degree of cognitive or developmental decline, particularly when seizures are frequent or severe.
• Most people with LGS require ongoing support with daily activities, though a small number of adults are able to live more independently.

What treatments are available for Lennox-Gastaut syndrome? 

Because children with LGS have multiple seizure types and their seizures often don't respond well to a single medication. Treatment for LGS is usually a combination of approaches tailored to your child's specific needs:

• LGS is primarily treated with anti-seizure medications (ASMs), which your child's neurologist can recommend based on your child's specific needs. Finding the right combination takes time and ongoing adjustment.
• Other options include the ketogenic diet (a high-fat, low-carbohydrate diet), surgically implanted devices, or surgical procedures.
• Although current treatments cannot cure LGS, the right combination of interventions can reduce seizures and meaningfully improve quality of life.

What healthcare providers should be on my child’s LGS care team?

Your child’s care team is the group of providers who work together to support your child's health, development, and quality of life. Lennox-Gastaut affects multiple body systems, so your child's care team will likely extend well beyond a single doctor, and building it early matters, as waitlists for specialty and therapeutic services can be long.

Specialists who may be relevant include:

• Developmental pediatrician: for cognitive, behavioral, and developmental assessment and support
• Gastroenterologist: for feeding difficulties, reflux, or nutrition concerns
• Pulmonologist: for swallowing or breathing issues
• Orthopedist: for musculoskeletal issues 
• Specialty Therapists: for physical, occupational, and speech therapies

Finding clinical trial opportunities & supporting research into Lennox-Gastaut syndrome

When you participate in research, you help your child and other families in the future. Medical research studies can be very different from each other. Some test new treatments, while others are "natural history studies" that just collect information about a disease’s impact over time. 

Clinical trials are research studies that help doctors find new treatments. Some trials test new medicines or therapies that aren't available yet. Even if you may choose not to participate, it can be good to know what options exist for Lennox-Gastaut syndrome. Your child's doctor or disease organization can help you find trials that might be a good fit. The U.S. government also maintains a registry at clinicaltrials.gov

Natural history studies are designed to help researchers learn more about the condition. This information is important for creating future treatments. Traditional natural history studies can involve additional medical appointments over the course of several years. Through the Citizen Health platform, families can also contribute to this kind of research by sharing the health data from their child's regular care, no extra appointments needed.

Patient registries collect health information from individuals with Lennox-Gastaut syndrome to advance research and connect families with trials. Joining a registry signals to researchers and drug companies that families are engaged and ready to help, which can attract more funding and research attention. Some diseases have more than one registry you can join. Patient Advocacy Groups typically establish and maintain patient registries for specific rare diseases. (See Section 5 below to learn more).

Organizing and maintaining your child’s medical records for Lennox-Gastaut syndrome

Rare disease patients see many different doctors, often across different medical and technological systems that may not talk to each other. Unfortunately, that means the burden often falls on caregivers to track care holistically, identify “gaps,” and make sure nothing gets missed. Keeping your records as organized and centralized as you can from early on is likely to improve your ability to manage your child’s care down the road.

You can start by creating a one-page sheet with your child's diagnosis, current medications, allergies, and emergency contacts. Bring this sheet to every appointment. It can really help in emergencies or when you see a new doctor.

Many caregivers establish one (or several) records binder(s) in which they keep track of appointments, medication updates, symptoms, and other ongoing medically relevant information.

We also encourage caregivers to consider Citizen Health’s free tools for centralizing, managing, accessing, and extracting key information from health records. Our system will collect all your health records, across doctors and health systems, making them available on our secure online platform that can provide answers in real time based on questions you ask (like “What medications has my child been prescribed in the past year?” or “When did we last see an orthopedist?”) 

As a company built by rare disease caregivers, we aim to overcome the need for physical records binders. But ultimately the important question is what works for you and your family.

Early intervention provides therapies and support for children from birth to age 3 who have delays or disabilities. Services may include physical therapy, occupational therapy, speech therapy, and other developmental support. 

Every state has an early intervention program, and you can ask for an evaluation even if your child doesn't have a formal diagnosis yet. In some states, early intervention programs are called “birth to three,” “early steps,” or “first steps.” 

It’s never too early to search for early intervention services in your state. Learn more from ECTA, the Early Childhood Technical Assistance Center.

3 & up: School services for children with Lennox-Gastaut syndrome

IEPs and 504 plans

When your child turns 3, they move from early intervention to school-based services. An Individualized Education Program (IEP) is a legal document that describes the special instruction, therapies, and support your child needs to learn at school. 

A 504 plan provides accommodations for students who don't need special instruction but need support because of a disability. Understanding your rights and these plans helps make sure your child gets the right services throughout their school years. 

Communicating with your school

Building a good relationship with your child's school team is important. You know your child better than anyone, and that knowledge is incredibly valuable. Come to meetings prepared with information about your child's needs, share your concerns and hopes openly, and never hesitate to ask questions if something isn't clear. 

You are an equal and essential member of this team. Other families in the LGS community can also be valuable resources for navigating your child’s school experience. 

Assistive devices and equipment for Lennox-Gastaut syndrome

Depending on your child's needs, assistive technology and adaptive equipment can help with independence, communication, and quality of life. This might include communication devices (Augmentative and Alternative Communication or AAC), safety helmets, or adaptive toys and tools. Your therapists can recommend the right devices, and many are covered by insurance or available through school programs.

Some devices and equipment can be expensive but can very often be covered by insurance. If coverage is denied, be sure to talk to your doctors about writing an appeal letter or a Letter of Medical Necessity. These documents can be critical for getting insurance coverage for devices and equipment. 

Respite care

Caring for a child with complex medical needs is hard work, and taking breaks is important for your health and your family's wellbeing. Respite care provides temporary relief, giving you time to rest, handle other responsibilities, or just recharge. Options range from a few hours with a trained caregiver to overnight or weekend programs. 

Respite isn't a luxury. It's a necessary part of taking care of your family long-term. The non-profit Access to Respite Care and Help (ARCH) provides guidance on how to find a respite care provider.

Building your support systems as a Lennox-Gastaut syndrome caregiver

Being a caregiver to a child with Lennox-Gastaut syndrome is a heavy responsibility. You can't do it alone, and you don’t have to. Building a network of support including family, friends, medical providers, therapists, other parents, and community resources, creates a safety net for hard days as well as people to celebrate victories with. 

When asking for help, it helps to be specific: people want to support you but often don't know how. Whether it's meals, watching your other children, or just someone to listen, letting others help is good for everyone.

Don’t forget about support for other family members! If your child has siblings check out the Sibling Support Project.

Medicaid and Social Security eligibility for Lennox-Gastaut syndrome

Even if your family income exceeds typical Medicaid limits, children with Lennox-Gastaut syndrome may qualify for Medicaid through special pathways designed for those with disabilities or significant medical needs. 

A program called Katie Beckett or TEFRA waivers allows children with disabilities to qualify for Medicaid based on their own income rather than family income. Additionally, children with significant functional limitations may qualify for Supplemental Security Income (SSI), which provides monthly payments and often automatically qualifies them for Medicaid. These programs can provide crucial coverage for therapies, equipment, and services private insurance won't cover. 

Learn more about Medicaid in your state through this interactive map from NORD.

ABLE accounts for rare disease

On that note, iIf your child qualifies for SSI, they may also be eligible for an ABLE (Achieving a Better Life Experience) account. ABLE accounts are tax-advantaged savings accounts specifically designed for people with disabilities that are opened in a child’s name but do not count against the $2,000 asset limit that typically applies to programs like SSI and Medicaid. Find out more here: ablenrc.org.

Understanding your insurance coverage for Lennox-Gastaut syndrome

for lWhat’s covered

• Your insurance policy determines what services, therapies, equipment, and medications are covered for your child. Start by reading your plan documents to understand your benefits, deductibles, co-pays, and out-of-pocket maximums. Call your insurance company's customer service or case management department as many insurers assign case managers to children with complex medical needs who can help you understand your coverage. 
• Don't assume something isn't covered until you've asked. Many families are surprised to learn what benefits are available when properly documented. 
• Keep notes of every call you make, including the date, time, person you spoke with, and what they said. This documentation can be very helpful later.
• Most children’s hospitals also have a financial counselor or patient navigator who may be able to help with insurance or financial coverage issues.

Therapy & rehabilitation

• When considering insurance coverage for therapies and rehabilitation services, make sure to see if your plan has a cap for the number of therapy visits per year. Many children with complex needs will exceed that cap and appeals or additional insurance coverage plans may be needed. 

Medical equipment

• If your child needs durable medical equipment such as a wheelchair, walker, orthotics, or at home equipment, getting insurance coverage for that equipment will likely require prior authorization or a letter of medical necessity.

Targeted treatments

• For individuals with an identified genetic cause of LGS, targeted treatments (also called precision medicines) may become available. Targeted treatments such as gene therapy are designed to address a specific genetic change causing a disease. Unlike treatments that only manage symptoms, these therapies aim to address the underlying genetic problem itself.
• Even after targeted treatments receive FDA approval, insurance coverage can sometimes be difficult because these medications are often very expensive. Medical teams and the drug manufacturer may offer support programs to help with insurance approvals, appeals, and financial assistance. 

Denials & appeals

• Insurance companies often deny coverage for therapies, equipment, or medications at first but denials can often be overturned with the right documentation. If coverage is denied, you have the right to appeal, and many families win their appeals. 
• An effective appeal letter includes: your child's diagnosis and how it affects their daily life, specific medical reasons from doctors explaining why the service or item is necessary, references to your insurance policy language that supports coverage, research or medical guidelines supporting the treatment, and a clear request for reconsideration. Many patient organizations and hospital financial counselors can help you write strong appeals. You can even appeal multiple times, and many families win on their second or third attempt. You're advocating for your child, and persistence often pays off.

Finding and connecting with families who have walked in your rare disease shoes can be life-changing. Other parents navigating the same diagnosis can offer practical advice, emotional support and hope based on their shared experience. They can understand the daily challenges and the victories, big and small, in ways that others can’t. Disease-specific communities often become a lifeline and a source of hope that remind you that you are not alone. 

Local Lennox-Gastaut syndrome support groups

Your genetic counselor or other healthcare provider may be able to connect you with local families in your area. It is totally appropriate to ask your providers if they know of any local families who might be willing to connect with you for a phone call or even a play date.

Some rare diseases are so exceptionally rare that it might not be possible to connect locally with another person with the same rare disease. But collectively, rare diseases are not that rare! Connecting with broader rare disease groups is another great option. Many states and communities have organizations that support all rare diseases. 

Patient advocacy groups (PAGs) for Lennox-Gastaut syndrome

Patient advocacy groups exist for many rare diseases and serve as a central hub for connections, reliable information, research updates and advocacy efforts. These organizations work to advance research, improve care standards, raise awareness, and support families. They often host conferences, maintain family directories or registries, fund research, provide educational resources, and fight for policies that benefit the community. 

Connecting with your disease's advocacy organization gives you access to experts, researchers, and a network of families while contributing to the larger mission of finding treatments and cures.

Citizen Health partners with the LGS Foundation, an organization dedicated specifically to Lennox-Gastaut syndrome. It provides educational resources, funds research, hosts events, and maintains a physician directory. Learn more about the partnership here. 

The Epilepsy Foundation also offers broad resources for people affected by any form of epilepsy, including LGS, and maintains the Rare Epilepsy Network, which supports families and facilitates research.

Disease-specific conferences and events

Many patient advocacy groups will help spread awareness through conferences and events. These can include in person events or online events and are great opportunities to connect with others and to stay on the cutting edge of new research opportunities. 

​​Attending a conference focused on LGS can be transformative. These gatherings bring together families, researchers, doctors, and advocates in one place. You'll hear about the latest research, learn from medical experts, meet families at different stages of the journey, and let your child connect with others like them. 

Many families describe their first conference as the moment they felt less alone. While attending may require travel and expense, many organizations offer scholarships or financial assistance to help families participate. If you can go, it's often worth it.