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If your child frequently stares off into space, it’s easy to assume they’re a daydreamer or have difficulty paying attention. But if you can’t seem to get their attention during those few seconds — no matter how hard you try — they could have childhood absence epilepsy (CAE).
This doesn’t mean your child has generalized tonic-clonic seizures (GTCS), which include a loss of consciousness and intense muscle contractions. Instead, with CAE, they may stare blankly into space and be unaware of what’s happening around them for anywhere from three to 20 seconds.
And while most kids outgrow CAE by adolescence, for some it can persist into adulthood. Here’s what you need to know about CAE, including the symptoms and potential complications, as well as what to be aware of if it continues into adulthood.
Childhood absence epilepsy affects 10 percent to 18 percent of kids with epilepsy in the U.S. and is one of the more common types of pediatric epilepsy syndromes. Kids with this type of epilepsy have absence seizures, which often include brief staring spells where they don’t respond when people touch them or talk to them.
These seizures can happen every day and may occur more than 100 times per day. They also can include automatisms (subtle repetitive movements) like eyelid fluttering and lip smacking. Because these seizures last up to 20 seconds at a time and occur so frequently, they can be mistaken for daydreaming or inattention.
Typically, kids with CAE are diagnosed when they are ages 4 to 10. But the condition most often starts between ages 6 and 7. According to the Clinical Neurological Society of America, childhood absence epilepsy is also more common in females than males, with girls making up about 60 percent to 75 percent of cases.
Usually, the first sign of childhood absence epilepsy is a blank stare that parents or teachers may confuse with attention issues or daydreaming. When a child is having an absence seizure, they stop what they’re doing and stare into space.
They also don’t talk or seem to understand if someone speaks to them. When the seizure is over, they may go back to what they’re doing or they may even appear slightly confused. Other potential symptoms of typical absence seizures may include:
Sometimes absence seizures are more gradual rather than sudden and last longer than 20 seconds. In these situations, the seizures are considered atypical absence seizures.
Because absence seizures are often subtle, they can be missed early on. For this reason, it’s important to pay close attention to what your child is doing when they’re staring off into space and keep a record of the symptoms.
Diagnosis of CAE typically involves a physical exam and an electroencephalogram (EEG), as well as a hyperventilation test. Hyperventilation plays a key role in CAE and can cause absence seizures in up to 90 percent of kids with the condition.
Once your child is diagnosed with childhood absence epilepsy, they’ll likely be prescribed an anti-seizure medication. The most common medications used are ethosuximide, lamotrigine, and valproic acid.
Some research suggests that ethosuximide may be more effective and have fewer side effects than some other options. However, this drug still fails about 50 percent of the time. So it’s not uncommon for kids to try more than one drug before finding one that works for them.
Early on, childhood absence epilepsy was thought to be a benign condition because these types of seizures are often easy to control and kids usually outgrow them. But in more recent years, researchers have discovered that despite these facts, children with CAE can experience a number of complications.
Here are some consequences of having absence seizures during childhood:
Risk of developing other seizure disorders — About 10 percent to 15 percent of kids will develop other types of seizures in their teens, including generalized tonic-clonic seizures and myoclonic seizures.
Risk of experiencing side effects from medications — Anti-seizure medications can cause side effects like nausea, vomiting, weight gain, sleep issues, attention difficulties, rash, and more.
Increased risk of injury during certain activities — Loss of awareness can make some activities more dangerous, like swimming, driving a car, and crossing the street. Parents need to provide increased supervision until seizures are controlled.
Increased likelihood of having problems in school — In addition to the risk of learning differences like attention-deficit/hyperactivity disorder (ADHD), kids with CAE may be easily distracted, forgetful, and disorganized. They may also get in trouble more often and miss important instruction time.
Increased risk of mental health conditions — Children with CAE tend to be diagnosed with depression and anxiety more frequently than kids in the general population.
Lower likelihood of finishing education — One study found that kids with absence seizures were less likely to complete high school. They were also less likely to have a job, especially if specialized skills were needed for the role.
Increased risk of problem behaviors — Some research suggests that kids with CAE may be more likely to abuse alcohol or have unintended pregnancies when they get older.
Continuing to have absence seizures into adulthood isn’t very common. Some experts estimate that around 6 in 10 kids with childhood absence epilepsy will outgrow their seizures by early adolescence. Others say that up to 74 percent will be seizure-free when they’re older. But for a few young people, the seizures will continue into adulthood.
They may also develop other types of idiopathic generalized epilepsy. In addition to CAE, these types include juvenile absence epilepsy, juvenile myoclonic epilepsy, and generalized tonic-clonic seizures.
While researchers aren’t exactly sure why absence seizures continue into adulthood, there are several theories for this phenomenon. One thought is that childhood absence epilepsy is simply an early sign of other types of seizures.
Another explanation is that the child actually had juvenile absence epilepsy — a condition that lasts into adulthood — rather than CAE. When absence seizures start around age 10 or later, it can be hard for a neurologist to determine which condition a child has. Consequently, they may diagnose them with CAE, especially if they have a lot of seizures each day.
If absence seizures start at an older age, it’s more likely that a person will continue to have seizure activity as an adult. In fact, epilepsy that begins after age 12 is unlikely to go into remission. Remission in epilepsy occurs when a person stays seizure-free for a significant period, typically measured in years.
Other factors associated with people whose childhood absence epilepsy persists into adulthood include:
Even if your child’s absence seizures appear to have resolved, you may want to continue having them monitored by a neurologist. You also should take your child to a neurologist if they’re experiencing breakthrough seizures or other changes. They can suggest treatments or interventions before something becomes an issue.
On MyEpilepsyTeam, people share their experiences with epilepsy, get advice, and find support from others who understand.
If your child was diagnosed with childhood absence epilepsy, how has this affected them long term? Let others know in the comments below.
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