Uncovering the signs can change the story

For many families, relentless seizures are clues that help uncover an underlying diagnosis—one that opens up a community of support, connections to foundations, different treatment options, and more. In this section of the site, we share candid stories from families who found a diagnosis. It wasn’t always easy, but they never gave up hope to get the answers they needed.

Brynleigh’s TSC Diagnosis Story

Brynleigh’s story | How one mom's gut instinct helped uncover tuberous sclerosis complex

Brynleigh’s mom, Lauren, had to trust her motherly instincts when fighting for a diagnosis for her daughter. She shares their story in this video.

Have you started the conversation with your doctor?

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 are the first steps to getting a more specific diagnosis.

Start the assessment today

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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.