Epilepsy is the most common chronic disorder of the nervous system. In childhood, it is more common than much better-known chronic conditions such as diabetes or rheumatism. Approximately 1 percent of the population in Europe suffers from epilepsy, and 50 to 60 percent of cases occur during childhood. With optimal treatment, more than 70 percent of patients can become seizure-free. A correct diagnosis of epilepsy or an epilepsy syndrome is essential for the best possible treatment.
Here you will find further information as well as a list of selected specialists and centers for pediatric epilepsy.
The term “epilepsy” is derived from Greek and means “to be seized” or “to be gripped.” This accurately describes the fact that “something happens” to the affected person that they cannot control themselves.
About 5 percent of all people experience an epileptic seizure at some point in their lives. A single seizure does not necessarily mean a person has epilepsy. Under certain conditions, anyone can have an epileptic seizure, such as after a severe head injury or an acute illness.
Epilepsy is only diagnosed when epileptic seizures recur without any external trigger.
Detecting Epilepsy in Children Early
More than half of all cases of epilepsy begin in childhood.
If epilepsy goes undiagnosed, the child may be at high risk of injury, depending on the type of seizure. In other cases, undiagnosed seizures can lead to learning difficulties and even academic failure.
Therefore, early recognition of signs of epilepsy in childhood is important. This allows doctors to initiate appropriate pediatric neurological treatment.
The occurrence of epileptic seizures can also be the first symptom of another condition. Possible examples include
- a brain tumor,
- a metabolic disorder, or
- meningitis.
In these cases, rapid and specialized diagnosis is particularly important.

A “grand mal seizure” in a child © Satjawat | AdobeStock
What types of seizures occur in children?
Epileptic seizures occur due to a dysfunction of nerve cells in the brain, which is often short-lived. They can manifest as
- sudden motor phenomena and
- changes in consciousness, behavior, and sensation
. There are two main groups of seizures:
- generalized seizures, which affect the entire brain, and
- focal seizures, in which the dysfunction begins only in a localized area of the brain.
In some cases, the dysfunction in focal seizures can spread to the entire brain during the course of the seizure. This is called secondary generalization.
When people think of epilepsy, they often first imagine dramatic-looking seizures with
- muscle twitching (clonic),
- muscle stiffness (tonic), and
- loss of consciousness
These are known as grand mal seizures.
But epileptic seizures can also look quite different:
- Fidgeting with a piece of clothing for a few moments for no apparent reason,
- brief, unexplained swallowing and smacking of the lips,
- Twitching of a hand or a limb,
- The occurrence of strange, unexplained sensory perceptions (auras),
- A brief “zoning out” (absence).
Not all seizures result in a loss of consciousness. In some epileptic seizures, consciousness is fully preserved; in others, it is impaired.
Perception of aura symptoms
Focal epileptic seizures often begin with what is known as an aura: Affected children notice unusual sensory impressions, such as
- tingling in a limb,
- visual disturbances,
- hallucinations, or
- strange tastes or smells.
Others feel strange sensations in the abdomen or rising from the abdomen (epigastric sensations). Some children recognize from the aura that a larger seizure is about to occur. However, an aura can just as easily be—and remain—the only symptom of a seizure.
An aura is a brief seizure that occurs in a very limited region of the brain. It usually cannot be observed by others, as it is purely a sensory experience.
Aura symptoms provide clues as to the region of the brain that triggers the seizure. Therefore, it is important to ask children with epilepsy specific questions about these symptoms.
Absences
Absences are very subtle epileptic seizures. As a result, they may go unnoticed at first. They are characterized by a brief lapse of consciousness with a lack of responsiveness and a memory gap.
Absences are most common in toddlers and school-age children. Furthermore, they are by far the most common type of epileptic seizure in children overall. They also occur in adolescents and adults. However, they become increasingly rare with age.
Because absence seizures are so brief and those affected are unaware of them, they often go undiagnosed for a long time. They are often mistaken for inattention (“daydreaming” children, “spacey” kids) or—especially at school—for a lack of concentration or motivation.
Infantile Epilepsies
In infancy, epileptic seizures can appear very atypical. In very young infants, they often manifest as a pause in breathing (apnea) or a brief pause, sometimes accompanied by
- a deviation of the eyes to one side (ocular deviation),
- eyelid fluttering, or
- rolling or twitching eye movements (nystagmus).
If muscle twitching (clonic movements) occurs, it often affects only a localized area of the body, which may change during the course of a seizure. Other seizure symptoms may include repeated smacking of the lips or thrusting out the tongue.
In another form of seizure that occurs in infancy, children suddenly open their eyes in fright and throw both arms up to the sides. This repeats in series with short pauses.
These so-called BNS seizures (West syndrome) can, if left untreated, lead to a halt in development or even developmental delays. For this reason, they must be recognized early as a form of epilepsy.
Epileptic seizures, especially in very young infants, are not always easy to recognize, even for experts. Therefore, parents should try to document these episodes on video.
Episodes are more likely to be seizures if
- recur multiple times in the same manner and appear atypical for the child’s age,
- cannot be stopped by touching the child and, conversely, cannot be triggered simply by changing the child’s position.
Infantile myoclonus
Much more common than epileptic seizures in infancy are a variety of benign, non-epileptic motor phenomena. These include, among others, sleep myoclonus. These are brief, rhythmic twitches that occur only during sleep. They can be interrupted by waking the child.
Furthermore, if the twitches (myoclonus) can be stopped by holding the affected limb still, this suggests that the phenomenon is not epileptic.
Diagnosis Following a Child’s First Epileptic Seizure
Any first epileptic seizure may be the first—and possibly, for some time, the only—sign of acute brain damage. Therefore, it must always prompt an examination by a pediatrician or pediatric neurologist as soon as possible.
All further decisions depend on the results of this examination. The diagnostic workup includes
- measuring brain waves (electroencephalography = EEG),
- a blood test, and
- often an electrocardiogram (ECG) to rule out other causes.
Depending on the findings, further tests such as magnetic resonance imaging (MRI) may be necessary. In some cases, a lumbar puncture is performed to examine the cerebrospinal fluid.
A normal EEG cannot definitively rule out epilepsy. For some children, repeated EEG recordings or even specialized EEG tests such as
- a sleep EEG or
- a long-term EEG
may be necessary.
Treatment of Epilepsy in Children
The primary treatment for epilepsy in children is medication. The choice of antiepileptic drug depends primarily on the specific epilepsy syndrome present. The more precisely the child’s epilepsy can be classified as a specific epilepsy syndrome, the more targeted the treatment can be.
With optimal treatment, more than 70 percent of children remain permanently seizure-free.
If medication does not lead to improvement, epilepsy surgery may be considered. This is only possible in cases of focal epilepsy—that is, epilepsy that originates in a well-defined region of the brain.
Another treatment option is a special diet (ketogenic diet). Patients follow a low-carbohydrate, very high-fat diet. Since this diet significantly impairs quality of life, it is used only for very severe forms of epilepsy.
While complete freedom from seizures is generally not achieved, a significant reduction in seizure frequency can be attained with the help of an electrical stimulator. It is implanted under the skin beneath the collarbone, similar to a pacemaker (vagus nerve stimulator = VNS). Regular stimulation of a cranial nerve—the vagus nerve—can suppress epileptic seizures.
Training for Families of Affected Children
A diagnosis of epilepsy in a child is a life-changing event for most families. Whenever possible, the family should participate in specialized training.
The modular training program “Epilepsy for Families” (FAMOSES) offers separate training sessions for parents and children in affected families. Parents
- receive information about the diagnosis of epilepsy,
- reflect on prevailing attitudes and opinions, and
- develop strategies and coping mechanisms for everyday life.
In the children’s social circles (friends, as well as preschool and school), there is often a great deal of uncertainty regarding the diagnosis and how to interact with a child who has epilepsy.
The first step is to convey that there is no single form of epilepsy. Rather, it is a highly heterogeneous condition with individual courses and environmental factors.
The majority of children with epilepsy have normal intelligence. However, specific learning disabilities or attention problems may occur more frequently. This is caused in part by the epilepsy itself, but also in part by the side effects of treatment.
Provided that those around the child are prepared for this, these issues can be identified early on, and the child can be supported through appropriate measures.
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