Watching your child have a seizure can be scary. If you’re a parent or caregiver of a child with Lennox-Gastaut syndrome (LGS), you may have witnessed several types. You might have seen your child’s face change during a seizure, like staring, repeated eye or mouth movements, or other unusual expressions.

Some seizures can cause sudden falls that may result in face or head injuries. One MyEpilepsyTeam member described how their daughter was hurt during a seizure: “It is scary. She banged her head and burst blood vessels in her eye when she had one in the hospital.”

Here’s how different types of seizures might affect the face in people living with LGS.

Types of Seizures in Children With Lennox-Gastaut Syndrome

LGS is a rare type of epilepsy syndrome (seizure disorder) that’s typically diagnosed early in life. This form of childhood epilepsy can involve several different types of seizures over time. The most common are tonic, atonic, and atypical absence seizures. Other types — including myoclonic, tonic-clonic, and focal or partial — are less common. LGS can significantly affect quality of life, and many children live with developmental delays, cognitive impairment (learning difficulties), and behavioral problems.

Most seizures are short, but they can be hard to control. Children with LGS often have frequent seizures that are clustered together. Many people with LGS will have more than one seizure in 30 minutes, without fully waking up in between, or a seizure lasting five to 30 minutes. This is called status epilepticus, and it’s a medical emergency.

Seizures often happen in three stages:

• An aura (warning)
• The seizure itself
• Recovery

During the aura stage, a child might feel strange. They may have altered vision, like seeing flashing lights, or have a sudden change in mood or behavior. Parents or caregivers may notice these signs just before a seizure starts, allowing them to prepare or act quickly.

When muscles relax during an atonic seizure, your head may nod or drop.

However, not every child has an aura, which means seizures can occur all of a sudden. “This can be very dangerous and scary,” shared one MyEpilepsyTeam member. “I have experienced this as a mother with a son who has had seizures for over 20 years with no warning.”

How Tonic Seizures Can Affect the Face

Tonic seizures cause muscles, sometimes including those in the face, to stiffen. These seizures usually last less than a minute and often happen during sleep. You may notice subtle abnormalities, such as your child stiffening or bending slightly, or taking brief pauses in breathing.

Muscle Spasms

Tonic seizures usually affect the torso, arms, and legs. Muscle contractions may cause a child to extend or flex their limbs — for example, they may raise their arms above their head like they’re dancing. However, these muscle spasms sometimes involve the face. Parents or caregivers may notice twitching or other kinds of repetitive movements in the eyes, nose, or mouth.

How Atonic Seizures Can Affect the Face

Atonic seizures cause a sudden loss of muscle tone, making the body go limp. A child may lose consciousness completely or partially. These seizures usually last less than 20 seconds, with a quick recovery.

Head Nodding

When muscles relax during an atonic seizure, your head may nod or drop. “I get this feeling in the back of my head and then my head drops forward,” shared one MyEpilepsyTeam member. “If I try to hold the feeling back, it gets more intense and the head drop gets more intense.”

Drooping Eyelids

The loss of muscle tone can also affect the face. You may notice your child’s eyelids drooping during a seizure. The eye area can be affected on its own or along with the rest of the body.

How Atypical Absence Seizures Can Affect the Face

Atypical absence seizures also cause a brief loss of muscle tone in the head, arms, and legs, and a child may appear to gradually slump or sag. These seizures can start and stop suddenly. Often, a child will return to whatever they were doing before as though the seizure never happened. Absence seizures tend to last just a few seconds, and milder ones may go unnoticed.

Staring

Absence seizures are marked by a loss of awareness rather than shaking or jerking. A child may stare blankly and not respond to you. Blinking is common during these spells. Because their eyes are open, a child may appear to be daydreaming or simply distracted.

Eye or Mouth Movements

Atypical absence seizures can also cause repetitive facial movements, usually affecting the eyes and mouth. Your child may make chewing or smacking motions.

How Other Seizures Affect the Face

Less commonly, children with LGS may experience other kinds of seizures that can involve the face. Partial (focal) seizures start in one part of the brain and may affect different areas of the body depending on where they begin.

Tonic and atonic seizures are often called “drop attacks” because they can make someone drop to the ground, potentially injuring their face.

Eye Rolling

Tonic-clonic (formerly “grand mal”) seizures cause the body to become stiff and then jerk rhythmically. The seizures can also affect the face, making it appear rigid or causing repeated jerky movements. Some children’s eyes may roll back.

Facial Twitches

The fast muscle jerks, or twitches, of myoclonic seizures can happen in the face, as well as in the neck, shoulders, and arms. A child may be briefly unable to speak or eat.

Risk of Injury Due to Falls

Several types of seizures can cause children to fall, often because of sudden muscle tone changes or loss of consciousness. Both tonic and atonic seizures are sometimes called “drop attacks” because they can cause someone to collapse without warning. Tonic-clonic seizures also raise the risk of falling.

Tonic seizures are more common during sleep, but they could cause a child to fall out of bed. These seizures can also happen during the day when a child is awake. If their body suddenly goes limp, a child may not be able to stay upright and could fall.

Facial Injuries

During a seizure, the brain temporarily loses control of the body, including the muscles that help you stay balanced or brace yourself. This means you can fall hard and be unable to protect your face or head.

Members of MyEpilepsyTeam have discussed falling during seizures. “For those who have drop attacks or tonic-clonic seizures, what are you using for fall protection? Any hacks out there that have seemed helpful as an alternative to a wheelchair?” asked one MyEpilepsyTeam member. “I wear a helmet and occasionally knee pads, but lately I’ve been having drop attacks where I fall backward.”

Other team members have described being injured during drop attacks:

• “I had a drop seizure a month ago — busted my nose up pretty good.”
• “Most of the time, I hit something on the way down. At work, I hit a drinking fountain, and at home, I put a big hole in my wall … more than once.”
• “I have broken a shower door, hit my head multiple times on the way down on the wall, the shower seat … fallen down a step onto the concrete. It seems to never fail that I end up hitting the left side and back of my head on the way down.”

Another member shared what happened to them during a tonic-clonic seizure: “I experienced one many years ago. I was folding clothes at the kitchen table when it happened, and I hit my head on the table when I fell. After being checked on at the hospital, I had to wear a neck brace for a time.”

Falling during a seizure can cause serious harm to the face and other parts of the body. Talk with a healthcare provider about ways to help reduce injury risk for yourself or your child, including safety gear or fall prevention strategies.

Talk With Others Who Understand

On MyEpilepsyTeam, the social network for people with Lennox-Gastaut syndrome and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with epilepsy.

Have seizures from Lennox-Gastaut syndrome affected your face or that of a loved one? Share your experience in the comments below, or start a conversation by posting on your Activities page.