Glossary​

Download the Doctor Discussion Guide

Seizures may be a sign of something more, so don’t wait to start the conversation with your doctor. This resource will provide you with:

  • Important information to share with your doctor that may help lead to a more specific diagnosis
  • Conversation starters to help keep your discussion on track
  • Useful tips to prepare for your upcoming appointments
  • A summary of why each question matters

Download the guide here or view it in its entirety below.

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Please keep in mind that this is not a diagnostic tool, but a conversation starter for you and your doctor.

Guide

Doctor Discussion Guide

Answer these questions to share with your doctor

  1. Do you or your loved one have a family history of seizures?
  2. When did the seizures start?
  3. What types of seizures have you or your loved one experienced, and can you describe the most recent one?
  4. What time of day do the seizures typically occur, and what happens before, during, and after the seizure?
  5. Are there any specific triggers that cause a seizure?
  6. Are the current seizures different from the seizures you or your loved one originally experienced?
  7. Do you or your loved one (whomever is experiencing seizures) have developmental delays?
    1. At what age did you first notice signs of developmental delays?
  8. Are you or your loved one still having seizures even though you take medication to prevent them? What kinds of medication have you tried, and has it helped? Has it caused adverse reactions?

Questions to start the conversation

These questions were created with input from parents of children and adults living with rare and severe seizure disorders to help you make the most of your appointment. Whether you’re talking to a new doctor or your current doctor, this page was created to help get the conversation started. Keep it for your records.

Before you start, let your doctor know that you read about uncontrolled seizures and wanted to ask a few questions.

  1. I’m worried about uncontrolled seizures and took an assessment to share with you. Can we talk about the assessment together?
  2. Is it possible that my loved one has a specific syndrome, and would you recommend doing any additional tests, such as genetic testing?
  3. Would having a specific diagnosis open up the door to more tailored treatment options or services?
  4. Is there anyone, in addition to you, who you would recommend we see or make an appointment with?
  5. How should I be tracking the seizures to help you get the information you need?
    1. A seizure tracker app
    2. Virtual hub
    3. Written log/seizure diary
    4. Mobile phone videos of the seizures
    5. Other
  6. How often should we communicate, and what’s the best way for me to reach you in between appointments or in case of emergency?

4 tips to prepare for your appointment

  1. Call your doctor’s office and ask the staff if the doctor would prefer that you send questions ahead of time or bring them with you. You can include some of the questions on this page.
  2. Bring this document along with any relevant medical records, seizure tracker logs, paperwork, and/or video recordings of recent seizures, including what happened before, during, and after.
  3. Print, save, and review this document ahead of time and jot down any additional notes or questions.
  4. If you can, bring someone with you to the appointment that can help take notes while you talk to the doctor.

For your records: Why each assessment question matters

The Seizures Are Signs assessment was created with the support of a medical team to help you and your doctor begin a conversation that may lead to a more specific diagnosis. This page is for your background information. Review it before your appointment as a reminder of why each assessment question matters, and keep this page for your records.

  1. Family history of seizures matters because...

    1. There are only a few epilepsy syndromes that are hereditary, so this may help your doctor uncover a specific diagnosis sooner, and a simple genetic test may help rule out Lennox-Gastaut syndrome (LGS), Dravet syndrome, or tuberous sclerosis complex (TSC); however, not all seizure disorders are associated with a family history.
  2. When the seizures started matters because...

    1. People with LGS tend to experience seizures later in childhood than those with Dravet syndrome or TSC. Unrecognized and/or uncontrolled seizures are linked to developmental delays, learning and behavioral disorders, and other negative long-term outcomes. By catching seizures early on, you and your doctor can develop the right treatment plan.
  3. Seizure types matter because...

    1. Every seizure disorder presents with a different combination of seizure types. Seizure types, frequency, and duration are important for a doctor to know and may help uncover an accurate diagnosis.
  4. The time of day matters because...

    1. You or your loved one may experience too many seizures to count. However, it’s important to try to take note of the most problematic seizure types, their time of day, and the duration of those seizures, so you can give your doctor a clearer picture of what’s happening. These details could be a clue to a more specific diagnosis.
  5. Seizure triggers matter because...

    1. Seizures can be brought on by a number of different triggers. While not everyone experiences triggers, some syndromes, like Dravet syndrome, are triggered by things like heat and illness. If you’re unsure about whether there are triggers, try keeping a seizure diary to help you identify patterns so you can relay them to your doctor.
  6. Whether or not the current seizures are different matters because...

    1. Seizures can change and new seizure types may emerge over time. Tracking them helps you identify if they do. This is important information for your doctor to know because some epilepsy syndromes are diagnosed when specific combinations or patterns of seizures emerge.
  7. Signs of developmental delays matter because...

    1. This can serve as a potential clue to determining a specific diagnosis. While not everyone will experience developmental delays, early detection can potentially reduce developmental delays or cognitive impairment.
  8. Still having seizures even though you take medication to prevent them matters because...

    1. Finding a treatment for uncontrolled seizures can be challenging and the more you know about your specific epilepsy syndrome, the more likely you are to get a treatment regimen that works. Sodium channel blockers, for example, may exacerbate seizures in Dravet syndrome. Knowing what to avoid is just as important as knowing what to take. An accurate diagnosis can help drive to better treatment decisions.

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Glossary/Tab/Desktop
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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.