Impact on development domains
Cognitive development
By cognitive development we mean the development of thinking. 
This is because the cause of epilepsy lies in the brain, which means that the organization and functioning of the brain network does not always function optimally. Epileptic seizures are a visible consequence of this, but cognitive challenges and problems can also occur. In addition, the underlying epileptic process itself can cause cognitive problems. These can be even more pronounced in children with demonstrable brain damage. Other factors also play a role, such as side effects of medication, stress, fatigue or additional diagnoses such as ADHD or a learning disability. Cognitive problems are often present early in the course of epilepsy and can even precede the onset of the seizures.
Common difficulties are in the areas of attention, memory, processing speed (work rate) and learning ability. These problems can sometimes persist, even with good seizure control and the use of the right medication. With certain types of seizures we also see typical consequences for cognition and learning, for example during an absence seizure the brain will not imprint new information.
At the same time, it is important to know that not all children with epilepsy have cognitive problems, this varies greatly per child and type of epilepsy. The vast majority of children develop no or only mild cognitive problems. Moreover, the presence of (subtle) difficulties does not necessarily mean that a child will also have problems in daily (school) life.
Intelligence
Intelligence refers to a person's ability to learn, solve problems, think logically, and adapt to new situations. It is often measured by IQ tests, which provide an indication of cognitive functioning.
Epilepsy and intellectual disability can co-occur. Approximately 20–30% of people with intellectual disability have epilepsy. Conversely, approximately 25% of people with epilepsy have intellectual disability. The combination of epilepsy and intellectual disability affects various areas of daily life, including learning, social interactions, communication and independence.
Children with difficult-to-treat, symptomatic epilepsy generally have a lower IQ, while children with easily treatable epilepsy generally have an IQ that is at most slightly lower than average.
Attention and concentration
Attention problems are common in epilepsy, partly because the brain areas involved in attention are widespread throughout the brain. Sustained attention, or the ability to stay focused for extended periods of time, especially when something feels boring or unpleasant, is a common problem in children with epilepsy. Different epilepsy syndromes can affect attention in different ways.
Attention problems can manifest themselves in:
- Difficulty maintaining attention on a game or task
- Little attention to detail
- Being easily distracted by (environmental) stimuli, such as sounds, movement or one's own thoughts
- Difficulty organizing tasks
- Seem forgetful
- ...
A pleasant, stimulating learning environment that can respond to difficulties can make a big difference for the child.
ADHD
In some children, attention problems are so severe and disruptive to daily functioning that ADHD is present. Research has shown that epileptic seizures occur more frequently in children with ADHD and vice versa.
Many children and adolescents sometimes display inattentive or hyperactive behavior. ADHD should only be considered if this is sufficiently serious. Some children with epilepsy display behavioral characteristics that resemble those of children with ADHD. Attention problems without hyperactivity (ADHD predominantly inattentive type) are the most common. In contrast to the general population, where ADHD is more common in boys, the distribution between boys and girls in children with epilepsy is approximately equal. The relationship between ADHD and epilepsy is reciprocal, with having one condition increasing the risk of the other. Early detection and treatment of ADHD in children with epilepsy is important, because this combination can have a negative impact on behavior, learning and social development.
The educational and behavioral support used for children with attention problems (without epilepsy) is also effective for children with epilepsy.
Executive functioning
Children with epilepsy, like students with ADHD or learning disabilities, can experience difficulties with executive functions. These are the thought processes that are needed to plan, organize, direct and regulate our behavior. Because epilepsy is associated with disruptions in the brain, this can hinder the development of these functions. Planning and organizing in particular can be more difficult as a result.
Many children, even those without epilepsy, have difficulty with this to a greater or lesser extent. By providing a child with a lot of structure and breaking down assignments into small, manageable steps, they can learn to deal with these challenges better.
Processing speed
Children with epilepsy sometimes have slower or variable processing speed. This is the speed at which a person can understand and respond to information. It is the efficiency of the brain in processing information, such as visual, auditory or movement stimuli.
A slower processing speed can result in:
- Responding in a mixed manner
- A slower response time to commands
- Difficulty working quickly and methodically
- Difficulty learning a routine
- Difficulty keeping up with the pace of lessons
Memory
Children with epilepsy may have difficulty using their memory properly. This can manifest itself in problems with recording, retaining or recalling newly learned information.
The causes of these memory problems are varied. They can be the result of the seizures themselves, especially when they originate in the temporal lobe, a brain area important for memory. Disturbed sleep, side effects of medication, underlying brain abnormalities and additional problems such as attention disorders or learning disabilities can also contribute.
Memory problems often occur just before or after an attack. During an attack, the brain is temporarily disrupted, which can lead to memories of the period just before the attack being lost. The period afterward can also cause confusion or fatigue, which temporarily makes the memory work less well.
The most common memory problems in children with epilepsy are:
- Forgetting what they just heard or read
- Forgetting events from long ago, such as school trips
- Problems retrieving words (word finding problems) or information
- Quickly forget information they have previously learned
School skills
At school, we work together with the children towards acquiring school skills. In this way, children gradually learn to better control their executive functions such as planning and structuring. In addition, in primary school, there is also a strong focus on acquiring reading, spelling and arithmetic.
Epilepsy can affect the brain networks involved in reading, learning or spelling. These difficulties are often already present before the diagnosis. In addition, some children have a comorbid primary learning problem, such as dyslexia, dyscalculia or dysorthography. Research shows that epilepsy is more common in people with learning disabilities, but that learning disabilities are also more common in people with epilepsy. Both epilepsy and learning disabilities can be a symptom of an underlying brain disorder. These disorders mainly affect school performance, especially in reading, writing and arithmetic.
Social-emotional development
Social-emotional development is the process by which a child learns to understand themselves and others, to recognize and express feelings, and to develop skills to interact positively with others within the social environment. Behavior and emotions change as children grow, and what you see depends greatly on the age and developmental level or mental age of your child. Therefore, it is necessary to always view expressions of behavior and emotions from a developmental perspective.
All children face different challenges during their development that can sometimes lead to difficulties, whether or not they have epilepsy. This can be related to your child’s temperament, cognitive vulnerabilities, sleep, social factors, and so on.
Behavioral and emotional problems
Because controlling behavior and emotions is also a function of the brain, epilepsy can also affect these areas. Behavioral problems such as inattention, irritability, increased excitement, negativity and angry outbursts are therefore common in children with epilepsy. These behaviors can be the direct result of neurological factors, such as a seizure originating from the emotional control centers of the brain, but can also be an indirect expression of underlying anxiety, sadness or stress.
Emotional difficulties, such as anxious or depressed feelings, may in turn be related to structural abnormalities in the brain or to repeated attacks that affect the functioning of emotion and mood regulating areas. In addition, they may arise from the psychosocial burden of the disease itself, such as worries about the disease, the unpredictable nature of attacks or the loss of control over one's own body. In some cases, negative feelings such as irritability, anger or fear also occur temporarily just before or during an attack, after which they usually decrease again.
In some children, these feelings last longer. In some cases, it may be an anxiety disorder or depression. This is slightly more common in children and adolescents with epilepsy than in peers without epilepsy. If you have any questions or concerns, it may be helpful to discuss this with the treatment team so that the right support can be provided.
Epilepsy medication and behavioral and emotional problems
Anti-epileptic medication can cause behavioral changes, but is almost never the direct cause of them. However, the medication can have side effects, such as concentration problems, irritability, strong emotions or hyperactive behavior. This is not the same for every child and depends on various factors such as the type of medication, the dosage and how someone reacts to it. It is true that the impact is greater the more medication has to be combined. A child who naturally has to deal with behavioral problems will be extra sensitive to the impact of the medication on behavior.
Social problems
It is important for children to develop social skills. These skills are needed to interact with other children and adults in an appropriate and positive way. Many children learn social skills easily, but some children with epilepsy may experience more challenges.
On the one hand, this can be related to the zone in which the epileptic activity takes place. As a result, children can experience problems with, among other things, reading facial expressions or empathy. On the other hand, children with epilepsy sometimes avoid social situations for fear of having a seizure or being bullied by others. Teachers can play an important role in this by informing classmates about what epilepsy is and how it manifests itself in the specific child.
In addition, children may experience less independence due to extra adult supervision. Although parents and teachers often do this with good intentions, overprotection can limit participation in age-appropriate activities and the associated social learning experiences. This can make children feel different or that the world is unsafe. It can also make them too dependent on adults.
Because children with epilepsy have an increased risk of delayed social-emotional development and self-reliance, it is important to pay sufficient attention to this and to support them in a positive way.
ADHD
Epileptic seizures are more common in children with ADHD, and on the other hand, ADHD is more common in children with epilepsy. Many children and adolescents sometimes show inattentive or hyperactive behavior. Children with epilepsy also often have (subtle) attention problems, even without ADHD. Only when these problems are clear and serious enough, ADHD can be considered.
ADHD is a neurodevelopmental disorder that can manifest itself in inattention, hyperactivity and impulsiveness. These symptoms lead to problems or limitations in daily life, such as at home, at school or during leisure time. There are three forms of ADHD, of which attention problems without hyperactivity (ADHD predominantly inattentive type) is the most common in children with epilepsy. In contrast to the general population, where ADHD is more common in boys, the distribution between boys and girls in children with epilepsy is about equal. The relationship between ADHD and epilepsy is reciprocal, with having one condition increasing the risk of the other. Early detection and treatment of ADHD in children with epilepsy is important, as this combination can have a negative impact on behaviour, learning and social development.
The educational and behavioral support used for children with attention problems (without epilepsy) is also effective for children with epilepsy.
ADHD Medication and Epilepsy
There is no evidence that ADHD medication would have a negative effect on well-controlled epilepsy. However, if a child with regular epileptic seizures starts ADHD medication, it is good to monitor the frequency and severity of the seizures in the beginning. If a clear connection is noticed between the medication on the one hand and the seizures on the other hand, the use of the medication can be re-evaluated.
ASD
Autism or Autism Spectrum Disorder (ASD) and epilepsy often occur together, both in children with normal intellectual development and in children with an intellectual disability. Children with ASD have an increased risk of epilepsy, and conversely, the diagnosis of ASD is more often made in children with epilepsy. In addition, children with epilepsy more often show (subtle) behavioral characteristics that are reminiscent of ASD, such as limited empathy, less flexibility in thinking or limited social insight. This can make it more difficult to connect with other children.
It is not yet clear why epilepsy and ASD often occur together. The simultaneous presence of ASD and epilepsy is probably caused by underlying genetic and environmental factors that increase the risk of both conditions. In the treatment of this group of children, it is very important to take both conditions into account. Both with sensitivity to stimuli and stress, and with the fact that stress can be a triggering factor for epileptic seizures. This may be why the threshold for a seizure is lower in these children.
Language and speech development
The abnormal brain activity associated with childhood epilepsy can have an impact on the development of various cognitive processes, including language and speech development. The language skills of children are important for the development of school skills, but also on a social-emotional level (being able to express oneself, making friends, etc.). Within language development, we recognize various language components: phonology, lexicon, morphology, semantics, syntax and pragmatics.
Not every child with epilepsy can be observed with language difficulties. In children with language difficulties, a lot of variation is found in the area of language and speech development. Sometimes difficulties are seen within one specific language component and sometimes the difficulties seem to be situated within multiple language components. Various factors play a role in this, including the age at which the epilepsy started, the type of seizures, seizure control, the location of the epilepsy, etc.
The literature states that language difficulties in children with epilepsy can also be subtle. For example, the child may be able to construct completely correct sentence structures, but have difficulty understanding underlying meanings, which can lead to misunderstandings and difficulties in conveying information. Another example of more common but rather subtle language difficulties are difficulties in word fluency or word finding. However, some children have serious language development difficulties or even see a regression or relapse of language development (aphasia).
When we look at the entire population, we see large differences between children in the speed at which they learn language. This also means that not every child who needs a little more time to learn to speak has a language delay or developmental difficulties. Speaking standards were drawn up to help recognize a language delay. The speaking standards describe the skills that a child must at least master at a certain age. If these standards are not met, there may be a language delay or language developmental difficulties. These standards were drawn up for monolingual, Dutch-speaking children. When a child is raised multilingually, they often do not achieve these standards at the same age as monolingual children.
Minimum speaking standards (to recognize a language delay)
- 1 year: lots of varied babbling (e.g. 'atata meme wewetutu jojujoe')
- 1.5 years: use at least five words (form may be incomplete, e.g. 'ba' instead of 'bal')
- 2 years: forming two-word sentences (e.g. 'mama weg') word structure still incomplete
- 3 years: use three to five words together (e.g. 'Jan koek hebben') little grammatical structure 50-75% understandable
- 4 years: simple single sentences (e.g. 'I want a cookie'), problems with plurals and conjugations, 75-90% understandable
- 5 years: well-formed, compound sentences (e.g. 'I want a cookie because I'm hungry') language use is usually still clearly understandable in concrete terms
If you think your child does not meet these minimum standards, you can also do the SNEL-test to find out. This test can be found at www.kindentaal.nl.
Sleep
Sleep and epilepsy are closely related. The relationship between sleep and epilepsy works both ways: seizures disrupt sleep, while sleep deprivation lowers the seizure threshold.
Research shows that children with epilepsy are more likely to have sleep problems than healthy children. These problems include less sleep duration, reduced sleep quality, more frequent nighttime awakenings, parasomnias and breathing disorders during sleep. (Nocturnal) epileptic seizures can cause children to get too little sleep or their sleep to be disturbed. There are also certain forms of epilepsy that only occur at night.
Lack of sleep can affect cognition, exacerbating difficulties with attention and memory. Lack of sleep can also contribute to daytime behavioral problems, such as poorer mood or increased irritability.
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