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Get the answers and the support you’re looking for

From finding a doctor to finding a community of support, these educational tools and resources are available to support you throughout your diagnosis journey.

Tips for your appointment

Tips for your appointment

Four key pieces of information caregivers recommend gathering before an appointment to share with your doctor.

  1. Describe what you saw
  2. Take a video
  3. Keep track of and log the time and/or duration of each seizure
  4. Keep track of and note any environmental or other factors that might be triggering seizures
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Find the right doctor

Finding the right doctor, specialist, or center is one of the most important steps toward a specific diagnosis. Check out the "Find a doctor" or "Find a center" links below to connect with doctors and centers who specialize in epilepsy near you. Or you can click on these individual hyperlinks if you suspect LGS, Dravet syndrome, or TSC. It’s important to seek out a specialist or center with experience working with rare and severe epilepsies. Remember that you may have to get a second or even third opinion.

If you need to travel for an appointment, there may be resources available for travel, housing, or even virtual visit opportunities.

Find a doctorFind a center

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Explore a treatment option

It may be time to explore a treatment option and talk to your doctor for more information. Don't wait to get the conversation started.

Learn more

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Importance of genetic testing

Approximately 30% to 40% of epilepsy cases may be genetic in origin. Genetic testing may help uncover an accurate diagnosis, which can open the door to more appropriate treatment plans as well as provide information on how to improve long-term outcomes. That’s why it’s so important to know which tests are available to you. Genetic test results can be a great tool to start a conversation with your doctor. Keep in mind, testing companies may offer patient assistance programs that significantly lower or eliminate out-of-pocket costs. Click the buttons below to learn about common genetic tests, including how the tests are performed and information on insurance coverage.

Genetic testing and
counseling resources
Find a genetics clinic

Downloadable resources

Seizures bring a level of uncertainty few can understand—and in most cases, parents are the first responders. That’s why we compiled top caregiver-recommended tools and resources for easy access.

Seizure readiness kit
Seizure readiness kit

Advice from a Dravet syndrome mom on how to put together a personalized seizure readiness kit to help you feel more prepared.

Download now

Seizure Action Plan Template
Seizure Action Plan (SAP) template

Use this template to create a personalized Seizure Action Plan (SAP), or set of guidelines on how to respond during a seizure. It includes health and medical information specific to the person and aims to help others recognize seizures and take the appropriate steps.

Download now

Individualized Education Plan worksheet
Individualized Education Plan (IEP) worksheet

Tips to help you navigate the annual goals and support services designed for each individual’s needs, ranging from speech therapy, counseling, and curriculum modifications, to mobility amenities.

Download now

Lennox-Gastaut syndrome (LGS) brochure
Lennox-Gastaut syndrome (LGS) brochure

A PDF with detailed educational information and resources to help you and your loved one understand and navigate an LGS diagnosis.

Download now

Disponible en Español

Dravet syndrome brochure
Dravet syndrome brochure

Educational information and important resources in a PDF to help you and your loved one once you have a Dravet syndrome diagnosis.

Download now

Disponible en Español

Tuberous sclerosis complex (TSC) brochure
Tuberous sclerosis complex (TSC) brochure

A PDF with important resources and educational information to help you and your loved one learn more about TSC.

Download now

Disponible en Español


Advocacy groups are a great way to connect with other families who may be going through what you’re going through. It’s a community of support that brings families together to share advice, support, participate in events, learn about grant opportunities, or simply feel at ease in each other’s presence. For many, the opportunity to connect with a disease-specific community of people who truly know what they are going through made a world of difference.

Federal and state programs

A number of programs are available to help you gain access to education, financial assistance, and home healthcare services. If you don’t qualify for Medicaid or Social Security Disability Insurance (SSDI) benefits, you can apply for a state waiver to get the support you need. We’ve put some helpful links all in one place.

Federal programs

There are several federal programs that offer various levels and categories of assistance to people with disabilities.

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Supplemental Security Insurance (SSI) and SSDI are programs that offer benefits to disabled people (including children) who have limited income and/or are unable to work due to their disability.

Go now

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Medicaid provides health coverage to millions of Americans, including people with disabilities.

Go now

State programs

Check your state to find out about available programs, such as state financial assistance and resources for those with disabilities. Home and community-based services (HCBS) waivers are also available to help people with long-term care services and support at home.

State waivers

The National Academy for State Health Policy provides a list of resources for children and youth with special healthcare needs.

Find your state waiver
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Absence/petit mal seizures
  • Previously known as petit mal seizures
  • Causes a short period of “blanking out” or staring into space
  • During the seizure, the person's eyelids may flutter
  • Usually affect only a person’s awareness of what is going on at that time, with immediate recovery
Atonic seizures
  • May be referred to as a “drop attack” or “drop seizure”
  • Person has a sudden loss of muscle tone and goes limp
  • Mild seizures look like a head nod or drop, while severe seizures can cause a person to fall to the ground
  • People with these types of seizures may wear helmets to protect from injuries 
Attention-deficit/hyperactivity disorder (ADHD)
  • Chronic condition characterized by a persistent pattern of inattention (inability to maintain focus), hyperactivity (excessive movement that is inappropriate to the setting), or impulsivity (acting on sudden desires without consideration) that interferes with functioning or development
  • Often first identified in school-aged children
  • Affects both children and adults and is more common among boys than girls
Atypical absence seizures
  • Blank staring, with eye blinking, chewing movements, or lip smacking
  • Could include finger or hand rubbing, or other small hand movements
  • Electroencephalogram (EEG) shows a slow-spike wave pattern (SSW)
  • May begin and end gradually, usually lasting for about 5 to 30 seconds
  • May be difficult to distinguish between this seizure type and typical behavior in those with cognitive impairment 
Behavioral issues
  • Issues with behavior or irritability 
Clonic seizures
  • Associated with repeated, rhythmic jerking movements lasting a few seconds to a minute that cannot be stopped by restraining or repositioning the arms or legs
  • Hemi-clonic seizures (a type of focal seizure) occur when sustained rhythmic jerking rapidly involves one side of the body at seizure onset
  • Most commonly occur in babies
  • Often seen as part of a tonic-clonic seizure and may be difficult to distinguish from a myoclonic seizure; however, the jerking is more regular and sustained during a clonic seizure
  • May also be associated with jerking or clonic movements that follow stiffening of muscles, as in a tonic-clonic seizure, and can last seconds to 1 to 2 minutes
Cognitive impairment
  • Or developmental delays, such as losing interest in toys
Developmental delays
  • Losing interest in toys, speech delays, or other delays identified by a doctor
Dravet syndrome
  • Dravet syndrome is a rare form of epilepsy that typically begins in the first year of life and is marked by frequent, often prolonged seizures in the early phases
Focal aware/simple partial seizures
  • Used to be called simple partial seizures
  • Person is fully alert and able to interact

Experiences can include

  • Involuntary motor movements on one side of the body
  • Intense sensory or emotional episodes, such as déjà vu or feeling unexplained emotions
Focal impaired awareness/complex partial seizures
  • Used to be called complex partial seizures
  • Person loses awareness, may not respond, and may have no memory of the seizure

Experiences vary, but can include

  • Starting with a blank stare, followed by chewing/lip smacking
  • Random activity like picking at the air or clothes, attempting to pick up objects, removing clothing, repeating words or phrases, etc
Generalized tonic-clonic/grand mal seizures
  • Formerly known as “grand mal” seizures. This seizures type is what most people think of when they hear the word “seizure”
  • Person loses consciousness or awareness, muscles extend and become rigid, and then jerk rhythmically on both sides of the body 
Infantile spasms/epileptic spasms
  • Occur within first year of life, usually by 4 to 8 months
  • Typically seen as a sudden stiffening of the body and brief bending forward or backward of the arms, legs, and head (can occur with limbs coming inwards towards chest, but not always)
  • Face may grimace or look surprised
  • Some infants arch their backs as they extend their arms and legs
  • Some infants may experience head drops
  • Frequently occur in clusters upon awakening or going to sleep
  • May look like a startle reflex in infants

According to the Epilepsy Foundation, treating seizures early and appropriately is critical to maximizing developmental potential.

Contact your doctor right away if you think your child is having infantile spasms.

Lennox-Gastaut syndrome (LGS)
  • Lennox-Gastaut syndrome (LGS) is a rare form of epilepsy that usually begins in childhood and is associated with multiple kinds of seizures.
Myoclonic seizures
  • Sudden, brief, shock-like muscle movements or jerks that usually don’t last more than a second or two
  • Person is alert
  • May occur in clusters and may be more pronounced upon wakening 
Refactory epilepsy
  • May also be referred to as "uncontrolled," "intractable," or "drug-resistant" epilepsy
  • Occurs when a person has failed to become (and stay) seizure free with adequate trials of 2 appropriately selected antiseizure medications
Renal problems
  • Problems with the kidneys
Severe aggression
  • Aggression that is extreme or unpredictable
Skin problems
  • Including bumps on skin or white spots
Sleep disturbances
  • Difficulty sleeping or staying asleep
Strange eye movements
  • Such as gazing or staring
Tonic seizures
  • Muscles in the body, arms, or legs suddenly become stiff or tense
  • May happen during sleep or can cause a person to fall if standing
  • Typically lasts for less than 20 seconds at a time 
Tuberous sclerosis complex (TSC)
  • Tuberous sclerosis complex (TSC) is a genetic condition characterized by the development of noncancerous tumors that may cause a range of symptoms, including seizures.