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of everyone affected by epilepsy

Will my child have problems with learning and behaviour?

Epilepsy is a varied condition. Different children will have very different experiences of how epilepsy affects them, and the impact it has on their school life.

Some children with epilepsy have no major problems with their learning or behaviour. Other children with epilepsy (for example, those with some epilepsy syndromes) are severely affected by their condition, and may have significant problems with learning, language or behaviour throughout their lives. These children need extra support. This is so that they can be fully included in the school day and reach their full potential.

Overall, children with epilepsy are at greater risk of learning and behaviour difficulties than children without epilepsy. These difficulties also affect children without identified special educational needs. A recent study found that these difficulties often go unrecognised and unsupported .It is important to think about the whole child, and consider all aspects of their life that might be affected by living with epilepsy. This is because learning, behaviour and wellbeing are all related to each other

What sort of learning could be a problem?

A recent study of school children with active epilepsy in West Sussex showed that:

  • Over half of the children found it more difficult to learn than other children
  • Over half of the children had problems with their memory
  • Just under half of the children had problems with the speed with which they processed information
  • Just under half of the children were not achieving as much as they could at school. The greatest difficulties were in mathematics and understanding their work
  • 6 out of 10 parents reported that their child had difficulties with attention and concentration

How might epilepsy affect my child’s learning?

Causes of the epilepsy
For some children, difficulties with learning can be caused by damage to their brain, which also causes their epilepsy. This damage could have happened before, during, or after their birth. Some children with some epilepsy syndromes are more likely to have learning difficulties than others.

The effects of seizures
Epileptic seizures can disrupt normal brain activity, and this can stop memory from working properly. The confusion that can happen for your child after a seizure may also cause memory loss.

Some children have a lot of epileptic activity in their brain, but don’t appear to be having any seizures. This can happen when your child is awake or asleep. If this happens very frequently, it can also affect your child’s memory and how they learn.

Depending on the type of seizures a child has, they may feel very tired or confused after a seizure. They may also have interrupted sleep which will make them tired. Feeling tired or confused can affect how well a child can learn.

The more seizures a child has, the more pieces of information they will miss. For example, if a child has hundreds of short absences in a day, they will miss many little bits of information. This will make gaps in their learning.

Side-effects from epilepsy medicines
The majority of children and young people with epilepsy are treated with epilepsy medicines. These don’t just reduce the numbers of seizures a child has. They also affect the way the brain controls all its electrical impulses. This is why epilepsy medicines can have an effect on your child’s learning.

Some children may have side-effects that affect their learning. These could include hyperactivity, irritability, aggression, drowsiness, dizziness, memory problems, problems concentrating and mood swings.  

Epilepsy Action has more information about children and epilepsy medicines

Absences from school
Some children miss parts of their education because they need time off school to go to appointments with the nurses and specialists who manage their conditions. They may also be absent as a result of seizures, recovery after a seizure or injuries from a seizure. If these are significant, you may want to talk to the school about possible reasonable adjustments for your child to catch up with missed lessons

Related conditions

A recent study of school children with active epilepsy in West Sussex showed that 6 out of 10 of the children showed some symptoms of at least one of the following disorders:

  • Attention deficit hyperactivity disorder
  • Autism spectrum disorder
  • Developmental co-ordination disorder  
  • Depression or anxiety

Only 2 in 10 of these had been diagnosed with one of these conditions. This is worth bearing in mind if your child is struggling with their learning.

What sort of help can my child get with learning?

Reasonable adjustments
Identify any ‘risks’ for your child with learning. Answers to our risk assessment questions may help you with this. The table gives some examples of possible risk and reasonable adjustments.  

Possible risksPossible reasonable adjustments
Missing information because of absence seizuresHaving a teaching assistant to watch for and provide information missed
Missing information because of absence from schoolHaving teacher provide notes from missed lessons   
Swimming lessonsHaving extra adult to watch for seizure activity
Chemistry lessonsWorking in pair with someone responsible who could make situation safe if seizure happened

Individual healthcare plan
Any action which has been identified to help will need to be agreed between you and the school and included in your child’s individual healthcare plan.

Support at exam time
It may be possible for your child to get help at exam time.

What should I do if I think my child needs extra support in school?

First you need to ask the local authority if they will do an assessment. They will say yes or no. If they say yes, they will first look at whether your child needs special educational needs support. Here are some examples:

  • Extra help from a teacher or assistant
  • Working in a smaller group
  • Observation in class or at break      
  • Help taking part in class activities
  • Extra encouragement in learning, for example encouraging the child to ask questions or to try something they find difficult
  • Help communicating with other children
  • Support with physical or personal care difficulties, eg eating, getting around school safely or using the toilet

After this assessment the local authority will decide if your child needs any of the things on the list.

If you or the local authority think that your child needs more than is offered by a special educational needs support you will need to ask them to do an education, health and care assessment (EHCA). This used to be called a statement.

How do I get an education, health and care assessment for my child?
The first person to talk to would be your child’s teacher or the school’s special educational needs co-ordinator (SENCO). They could give you some guidance on how to apply to your local authority for an assessment (EHCA) for your child.

The local authority must:

  • Consider requests for assessment
  • Consult with the relevant people
  • Make a decision within 6 weeks of the request about whether an assessment will be carried out

What is an education, health and care plan (EHCP)?
In order to get a plan for your child you will need to ask your local authority. A decision about whether a child needs special educational provision must be made within 16 weeks of the request. If the local authority says the child doesn’t have a special educational need, you, as the parent can appeal to the SEND Tribunal.

If the local authority says your child does have a special educational need requiring an EHCP, the EHC checklist must be completed. The local authority must send a draft to you, as the parent with 15 days for you to give feedback. Then a copy including a named school if relevant must be sent to you and the named school.

If the local authority agree that your child needs an EHCP, they will then draft the plan and send it to you for comment. There are strict time lines for this communication. The assessment or your comments on it might include a request for your child to attend a special needs school. It might include a recommendation that you have a personal budget for your child’s education. The plan should include what the needs of your child are and what the extra help should be. 

A checklist should include:

  • The views, interests and hopes of your child
  • Special educational needs (SEN)
  • Health needs related to SEN
  • Social care needs related to SEN
  • Outcomes - how the extra help will benefit your child
  • Special educational provision (support)
  • Health provision
  • Social care provision
  • Placement - type and name of school or other institution
  • Personal budget arrangements. This is the amount of money a local authority gives you for your case, based on an assessment of your needs
  • Advice and information - a list of the information gathered during the EHC needs assessment

The plan should be reviewed every year. It can last up to the age of 25.

You can find out more about your local authority’s policy on special educational needs, by searching using the name of your local authority and the words “local offer”.

Here are some organisations that would be able to help you with applying for an EHCA:

If the local authority don’t agree that your child needs an assessment or plan, you have the right to appeal. This would be to the Special Educational Needs and Disability (SEND) Tribunal.

Epilepsy Action resources

Epilepsy Action has more information on supporting pupils with specific learning or behaviour issues in the epilepsy training section of our website. The topics include:

  • Memory
  • Attention and concentration
  • Speech and Language difficulties
  • Behaviour problems

It also has video clips of four young people talking about their learning experience.

How might having epilepsy affect my child’s behaviour and wellbeing?

Medical/physical issues

Causes of the epilepsy
For some children, difficulties with learning can be caused by damage to their brain, which also causes their epilepsy. This damage could have happened before, during, or after their birth. Some children with some epilepsy syndromes are more likely to have learning difficulties than others.

The effects of seizures
Some children may behave differently in the time before, during and after a seizure.

In the hours or even a few days before a seizure, a child’s mood or behaviour may also change. This is called a prodrome.

During a focal seizure, it’s quite usual for a child to appear to be behaving differently. These behaviours may include gagging, lip smacking, running, screaming, crying, and/or laughing. They may not be conscious of what they are doing, but they are in fact having a seizure.

After a seizure, it’s quite usual for a child to be confused, have a headache, feel sleepy or have problems with vision or speech. This can also change their behaviour.

Very rarely, a child might have a condition called post-ictal psychosis.  This can be very frightening and can change a child’s behaviour. It can cause them to have a strong belief that something unreal is true, or hear or see things that are not there.

Side-effects from epilepsy medicines
Some children may have side-effects that affect their learning. These could include hyperactivity, irritability, aggression, drowsiness, dizziness, memory problems, problems concentrating and mood swings. 

Epilepsy Action has more information about children and epilepsy medicines

Related conditions
A recent study of school children with active epilepsy in West Sussex showed that 60 percent (60 in 100) of the children showed some symptoms of at least one of the following disorders: attention deficit hyperactivity disorder, autism spectrum disorder, developmental co-ordination disorder, depression or anxiety. Only 20% (20 in 100) of these children had been diagnosed with one of these conditions.

Social and emotional issues

Children with epilepsy are at higher risk of behavioural, emotional, psychiatric and social problems than children without epilepsy. This risk is also higher than for children with other long-term health conditions and sensory impairments.

Why has my child’s behaviour changed?
There are many ways in which your child may be affected by their diagnosis.  They may:

  • Be self-conscious of their epilepsy
  • Be frightened that they are going to have a seizure
  • Experience anxiety or depression because of their epilepsy
  • Be bullied because they have epilepsy
  • Have frequent short-term absences from school, due to medical appointments or seizures, causing them to miss some school activities
  • Have long-term absences from school because of their epilepsy and need help to get back into their school routine
  • Experience side-effects from epilepsy medicine, which could include drowsiness, dizziness, memory problems, problems concentrating and mood swings
  • Feel very tired, because they are recovering from a seizure or have had disturbed sleep
  • Have another condition which is also affecting how they feel and how they learn

It is important that the school is aware of these possible things your child might be going through. They could all have an effect on your child’s learning and emotional wellbeing.

If my child’s behaviour changes what can I do about it?
The first thing to work out is where the behaviour is happening and who with. If the changed behaviour is happening everywhere, there may be a medical cause. If the change is only happening at home, or at school, it may be worth looking at what might be happening in that particular setting.

Here are some questions to help you work out where the problem might be.

Ask yourself

  • Where is it happening?
  • What is their teacher saying about how they are in school?
  • What do other family members think is happening for your child?
  • Can you identify any particular triggers for the behaviour?
  • Are they being bullied?
  • Has it started happening at the same time as a change of epilepsy medicine?
  • Has it changed at the same time as poorer seizure control?
  • Are there any seizure triggers that might be avoided?
  • Do they need to see the specialist to check for underlying seizure activity?
  • Are they getting stressed? Do they need help with staying more relaxed?

The answers to these questions will help your family, the school and the specialist to work out what is affecting your child’s behaviour and what it is a good idea to do about it.

Keeping a seizure diary is a really good way of seeing if there may be a link between the timing of a change in epilepsy medicine and the timing of a behaviour change.

Epilepsy Action has seizure diaries

Coming to terms with the diagnosis
It can be really difficult to terms to terms with a diagnosis of epilepsy. This can affect all members of the family in different ways. As a parent finding a way for you to come to terms with your child’s diagnosis and feel less anxious, may help your child do the same.

When your child is first diagnosed it may be a challenge to find a balance between keeping them safe and allowing them their independence. Many parents find that helping their child maintain as much independence as possible helps with their general wellbeing. This should help them come to terms with the epilepsy. And the more positive your child feels the more likely it is that other people will not see his or her epilepsy as a problem.

It is very easy to put all your attention into the child with the diagnosis. Try to make sure any siblings are included in sharing information about what has happened and how you are going to adapt as a family. This is also likely to help the child with epilepsy accept their condition with less fuss.

Information for siblings

How can the school support my child?

The school should be aware of ways that your child’s epilepsy might have an effect on their behaviour and wellbeing.

The school should make sure that your child receives the support they need to deal with these issues. To help them do this, they should get advice from relevant healthcare professionals. They should also listen to, and value the views of you and your child about how they can do this.

It is important to bear in mind that anything that affects a child’s behaviour and wellbeing can have an effect on how well they learn. Helping your child reach their potential as a whole person should be a key focus of education.

Bullying
For any child who is different there is a risk that they may be bullied.

Contact a Family have detailed information and guidance on how to support your child if you think this is happening to them.

What can I do to help the school support my child?

You have a very important role in helping school to provide your child with the support they need. Here are some ways you can help:

  • Keep the school up-to-date with detailed information about your child’s epilepsy and needs. This is especially important if there are any changes in their condition or treatment
  • Find a means of communicating important information with the school in a way that works for both of you. This is likely to include you and school staff being able to record information on a daily basis. Some people use a communication book for this
  • Make sure you carry out any responsibilities listed in your child’s individual healthcare plan
  • Go to all the meetings that you are invited to. Try to think beforehand about any information you can provide that will be helpful
  • Make sure that the school are easily able to contact you, if there is an emergency
  • If it is needed, make sure that the school has the correct rescue medicine. This needs to be in date, clearly labelled and in the correct container
  • Make sure your child knows who to tell if they get a warning of a seizure
  • Even if you feel angry about the way you or your child has been treated, a calm, organised approach to the conversations with the teachers will usually get a better result

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code: 
F143.02
Event Date: 
Monday 8 August 2016 - 11:18

Epilepsy Action would like to thank June Massey, Specific Learning Difficulties Consultant, for checking this information.

June Massey has no conflict of interest to declare.

This information has been produced under the terms of The Information Standard.

  • Updated August 2016
    To be reviewed August 2019

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