Girl with Dravet syndrome

Zora’s story | How treatment changed after receiving a diagnosis of Dravet syndrome

Finding the right diagnosis can help you understand your child better, including certain behaviors and treatments, just like with Zora’s story.

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While everyone’s diagnosis story is different, many started by trusting their instincts and having a conversation with their doctor. Knowing what questions to ask and how to explain the signs you are seeing is the first step to getting a more specific diagnosis.

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  • Previously known as petit mal seizures
  • Causes a short period of “blanking out” or staring into space
  • Usually affect only a person’s awareness of what is going on at that time, with immediate recovery
  • 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)
  • Also known as ADHD
Atypical absence 
  • Blank staring with eye blinking, chewing movements, or lip smacking
  • Could include finger or hand rubbing, or other small hand movements
  • 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 
  • Associated with repeated jerking movements lasting a few seconds to a minute that cannot be stopped by restraining or repositioning the arms or legs
  • 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
  • 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
  • Used to be called complex partial seizures
  • Person loses consciousness, may not respond, and has 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, remove clothing, repeat words or phrases, etc
Generalized tonic-clonic
  • Formerly known as “grand mal” seizures and is what most people think of when they hear the word seizure
  • Person loses consciousness or awareness, muscles extend and become rigid, and then muscles jerk rhythmically on both sides of the body 
Infantile spasms
  • Occur within first year of life, usually by 4 to 8 months
  • Typically seen as a sudden bending forward of the body with stiffening of the arms and legs lasting for a few seconds
  • Some infants arch their backs as they extend their arms and legs
  • Frequently occur in clusters upon awakening or going to sleep
  • May look like a startle reflex in infants
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.
  • 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 
Personality disorders
  • Such as oppositional disorders
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
  • 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.