FAQs

As you and your family go about your usual lives or face new situations, you may question if the activity or situation will impact the epilepsy or vice versa. You are not alone. Below are just some of the questions posed by parents, answered by Epilepsy
Nurse Educators at Epilepsy Action Australia.

Have a question? Click here to submit your query for an individual response.
 
Learning & Attention

 
Memory

 
Psychological Wellbeing

 
Epilepsy & Seizures

 
Medication

 
Can epilepsy affect my child’s learning ability?

Most children with epilepsy don’t have significant learning problems. However, children with epilepsy do have a higher rate of learning difficulties than the general public. These learning difficulties don’t necessarily mean the child is not smart but they may require additional support to learn.

Neurological
damage, frequent seizures, or unwanted side effects
of antiepileptic drugs
can all affect school performance. Most of the time it is a combination of factors.

This online course is designed to give you ideas for helping your child with learning
and to give you details for professionals who may be able to assist your child
 
How can we work out what is causing my child to have learning difficulties?

Firstly keep a diary. You can trace things back and look at when things (such as more seizures, medication changes) happened that might affect learning, concentration and memory. Usually you can identify a cause this way if it’s related to the epilepsy.

If you are not sure about your child’s learning it is best to speak with the teacher and to arrange an assessment with a professional such as a neuropsychologist
or an

This online course is designed to give you ideas for helping your child with learning
and to give you details for professionals who may be able to assist
your child.
 
My daughter is on a high dose of antiepileptic medication and is struggling in school. Could the medications be the problem?

Medications can be part of the problem. If so, it is usually when they are first started – side effects are usually worse in the first few weeks of starting an antiepileptic drug – or can be related to the dose. Certainly a high dose can have an effect on learning and thinking. Some signs that learning difficulties are related to medication include:

  • Difficulties happen at a certain time of day, such as shortly after taking medication, corresponding to the peak levels of medication in the blood;
  • Difficulties coincided with starting medication rather than when the seizures started;
  • Difficulties or side effects are noticed the first few weeks of starting medication or when there is a change or increase in dosage in medication.

It is important to discuss this with your neurologist
to see if there is any room to reduce the dose without high risk of seizures happening or even consider changing medications. The ideal situation is to be on one medication, the lowest dose possible without seizures. Obviously this is not always possible, but unacceptable side effects should be addressed.

It’s a good idea to speak to your daughter’s school as well to discuss what to do and have a plan such as an Individual Education Plan. They need to recognise she has some difficulties and put strategies
in place to help her.
 
Do children with epilepsy have trouble with attention?

Impaired attention leads to learning problems. Children with epilepsy often have more problems with attention, particularly sustained attention. One disorder most commonly associated with attention impairment is Attention-deficit/hyperactivity disorder (ADHD). ADHD is more prevalent among children with epilepsy than in the general population. Antiepileptic drugs can also affect attention.

This course includes ideas about helping your child with attention.
 
Is ADHD more common in children with epilepsy?

Approximately 1 in 3 children with epilepsy have symptoms of ADHD. Stimulant
medications are usually used and are both safe and effective.

Behavioural and learning strategies that are used for children with ADHD may be useful for a child with epilepsy and ADHD type symptoms.
 
School is insisting I get my son tested for ADHD because they feel his behaviours are not related to his epilepsy. How do we do this?

The two key symptoms of ADHD are inattention and hyperactivity
Many of the symptoms of ADHD are shared by other conditions and it frequently overlaps with other conditions. Usually a doctor such as a paediatrician or child psychiatrist does the initial assessment or diagnosis
and it is also common for psychologists to be involved. Psychologists focus mainly on how the disorder affects behaviour and learning, and what can be done to improve this.

There are various ways to measure ADHD. Rating scales, questionnaires and other tests for collecting information from the children themselves, their parents/caregivers and their teachers are used. Children are observed at home and school.

See your GP for a referral to an appropriate paediatrician to start the ball rolling.
 
School continues to be a struggle for my son, but he masks it by being the class clown. He is well liked by his peers and is actually very popular. This is not helping his grades though.

Many class clowns struggle with academic concepts and, in an attempt to hide their inabilities, focus their attention on disrupting the class. By doing so, they can make it appear as if they aren’t working simply because they don’t want to, not because they can’t.

Whatever the reasons for children taking on the role of class clown, their behaviour should not be ignored. Try to generate some alternative strategies. For example if the clowning is a cover for fears of failure, the teacher might be able to provide or arrange for instructional support. It is important to work with the school on this and if necessary, seek out some external support as well, such as a tutor or psychologist.
 
Recently my son has been complaining of being “unable to focus”. He has grown quite a bit and I am worried his medication will need to increase – which will be VERY upsetting to him because he actually wants to come off medication. What should I do?

It might be a good idea to work on your son’s concentration first, to see if you can improve his focus. His inability to focus may or may not be related to the dose of his medication.

You will need to see his doctor and get the medication blood levels checked. The medication dose may need to go up or down (more likely up in this case, given his growth spurt).

This course includes information and ideas about attention and ‘focus’
and also suggestions for professionals who may be able to assist.
 
How can you help a child with memory problems? It is frustrating for us all.

Memory difficulties can be frustrating for everyone and there are some simple strategies that may help. This course includes a section on memory
which may be of assistance.
 
Can antiepileptic drugs affect the memory?

As with all medicines, antiepileptic drugs have many possible side effects. Side effects often happen when you start taking a new antiepileptic drug, or if the dose is too high for you. Epilepsy and anti-epileptic drugs can cause or make memory problems worse, particularly if the dose is too high. Lowering the dose or changing to a different antiepileptic drug may help.

Speak with your child’s doctor about your concerns.
 
My son missed his dose of medication yesterday morning but has taken his usual doses since. He hasn’t missed it before. Will he be alright? Will it trigger a seizure?

Some people are more sensitive to missing a dose than others. Particularly in children the medication gets broken down faster because they have a faster metabolism
. It is therefore even more important that kids take their medication regularly. If you realise a dose has been missed then give it as soon as possible and then take the next dose as normal. If the dose is completely forgotten, don’t double the dose next time; just take the next dose as normal.

If you notice that seizures are happening when they have been controlled previously, it could mean either the child is regularly forgetting doses or they may have gone through a growth spurt and medication levels may no longer be in the therapeutic range
 
What can be the long term effects of seizures on the brain?

There is no ‘one-size-fits
-all’ answer to this, and there are many different factors involved such as:

  • The type of seizures and how often they happen is the strongest reason for decline in brain function. So as one example, if someone has regular tonic
    -clonic seizures, say 2-3 per week, for a number of years then there is a likelihood this will affect their abilities such as thinking, learning and memory (cognition).
  • Severe or prolonged seizures are more harmful. If someone has a number of episodes of prolonged seizures (>30mins) this can have a negative impact.
  • The type of epilepsy and the part of the brain where the seizures are happening affect the brain differently. Some seizures are harmful to the brain, whilst others can be quite benign
  • People on high doses of medication or many types of antiepileptic medication are more likely to show signs of decline. Many of these effects can be reversed with changes in medication.
  • Gaining good seizure control even after years of poor seizure control can improve thinking and memory function.

Poorly controlled epilepsy and repeated seizures of any type affect quality of life, and also may take a long-term toll on brain function. Prolonged seizures are clearly capable of causing injury to the brain.

Aiming for good seizure control is the best thing you can do to maintain and improve brain function.
 
Our son’s epilepsy is not controlled and we administer midazolam as emergency medication several times a month. I am worried about long-term effects.

The effects of midazolam go away quickly and long term effects are very rare. It has less harmful effects than other benzodiazepines as it is water soluble. Long term use for the management of epilepsy is not recommended due to the risk of tolerance (reduced effectiveness) but it is a very effective “rescue” medication for seizure emergencies. You may find as your son gets older, he may need a higher dose.

It is important to speak to your doctor about any of your concerns.
 
What is the best emergency medication to use?

This is not a simple question to answer as some medications will be suitable for some people and not others. The two most frequently used emergency medications for seizures in Australia are midazolam and diazepam
. Midazolam is used because it is a shorter acting sedative than diazepam
(meaning it clears out of the body faster) but it is not used in people who have respiratory problems because it can cause breathing changes. It is also administered in an easy way – either in the nose or mouth.

It is best to discuss this with your doctor as it’s an individual thing.
 
I have heard there is a ‘laughing seizure’. I have a child who is autistic and has Tourette’s and has episodes of inappropriate laughing and we are not sure if it’s behaviour or a possible seizure.

A laughing seizure is called Gelastic seizure
. It is rare and involves sudden crying or laughing. It is not the usual sound of happy laughter and it is usually out of context. It is usually followed by signs of focal
seizures, such as altered awareness and lip smacking.

Gelastic epilepsy can go on for very long periods of time without a diagnosis, because it is often mistaken as a normal laughing or crying, especially in your son’s case where there are other factors involved. It is difficult to say if it is behavioural unless you keep a diary and it would be a good idea to record it on camera to show the doctor.

It is important to speak to the doctor about these though because they are often caused by a lesion in the brain.
 
My seizures are becoming more frequent and lasting longer. This has dramatically affected my learning – memory, word finding, processing – I feel like I have become “slow”. Are there any exercises I can do to combat this? It’s really affecting me, not only academically, but personally too.

Firstly it is important to address the change in your seizure patterns. There may be a reason for it, and you shouldn’t just accept it. It can be hard to know what’s going on when a seizure pattern
changes. Sometimes it is stress or major life changes – physical, physiological or emotional. It could be a sickness, hormonal, fever, or an infection. Whatever the cause, it sounds like your medications aren’t effective anymore. You will need to see your doctor to check levels and review your medications.

Certainly you can put in place strategies to help with your learning as well, but it sounds like your epilepsy needs a review as a priority first. If you reduce the seizures, it will definitely show an improvement on your learning.
 
Some children grow out of their epilepsy – is that typically those with absence only seizures?

If your child has been diagnosed with epilepsy, you may be worried that it will be a life-long condition. About 7 in 10 children diagnosed with epilepsy, not just absence epilepsy, will “grow out of it” by the time they are 20. A recent study shows that the majority of children with epilepsy grow out of it, with or without treatment. If a child has been free of seizures for some years, it may be worth seeing your doctor to review reducing or weaning off epilepsy medications, to see if it’s still really needed. The remission rate for childhood absence epilepsy is 80-90%.
 
My son has just started to be weaned off his medication. He seems to be getting very tired. Is this a normal side effect to reducing medication?

Just like commencing a medication, weaning off a medication can cause side effects, or withdrawal effects. If anything out of the ordinary happens get in touch with the doctor for guidance. Coming off medication is like going on; it needs to be done gradually and sometimes needs to be adjusted according to how the person is tolerating the change.
 
My child has been diagnosed with epilepsy and we want others to know about it without her being negatively affected. We don’t want to keep secrets. How do we go about this?

The effects of an epilepsy diagnosis are not limited to just your family. A child with epilepsy should be supported in leading as normal a life as possible, given his or her particular situation. This view should be shared with extended family members, teachers, coaches, and friends. It is important for you to recognise how the diagnosis might affect others and communicate with them accordingly.

This resource includes a section about talking to others about your child’s epilepsy
which may be of interest.
 
My child only has seizures at night, but he is having a lot of trouble staying awake and concentrating during the day. Are the seizures the reason? He seems to sleep well otherwise.

When seizures happen during sleep, they cause awakenings disrupting sleep which causes daytime drowsiness. A seizure during sleep affects sleep patterns for the rest of the night. People with epilepsy are not often aware of seizures that happen during sleep and may suffer for years from daytime sleepiness and concentration problems without knowing why. So if someone has regular seizures, particularly during sleep, this can significantly affect their functioning during the day.
 
My child has been diagnosed with depression. Can this affect learning?

Depression will affect mood, physical health and psychological health, including learning ability.

Symptoms of depression occur in 25-30% of adolescents with epilepsy. Trouble with concentration and learning are major symptoms. Anxiety
is seen in 23% of children with epilepsy. Symptoms include distractibility
and restlessness.

Depression can impair
learning. It interferes with thought process, the ability to make decisions and concentration. Depression changes the brain, which can slow the brain’s functioning. It usually causes memory problems and your child may have trouble remembering events or details. It can even cause confusion, or the child being overwhelmed or becoming frustrated easily. Even everyday tasks can be difficult for someone with depression.

It may assist to speak with your GP about a referral to a professional to assist your child with depression.
 
It’s hard to tell if our child is daydreaming or having an absence seizure. How can we tell them apart?

It can be very difficult to differentiate between a daydream and an absence seizure. A general rule of thumb, but not always is:

  • An absence seizure is very brief and usually over in a few seconds. Daydreaming can go on for longer.
  • An absence seizure starts and stops suddenly, where as in daydreaming they may wander off gradually.
  • Absence seizures can have other features such as loss of facial expression, upward eye movements, blinking, chewing or fidgeting.
  • A child is not aware of having an absence seizure, whereas they will usually be aware they have drifted off daydreaming.
  • A child won’t respond to a gentle touch on the arm if they are having an absence seizure (unless it coincides with the seizure stopping) whereas a daydreamer can be brought back to attention by gentle touch.

 
When I have a seizure I forget details I just studied over the past couple of days. I have exams coming up soon, so what can I do?

Short term memory loss of events before and after a seizure is very common. Some people eventually get some memory recall, while others lose it forever. It’s probably best to study thoroughly, over a period of time rather than cramming, and take notes.

If a seizure occurs very close to exam time, and you do have memory loss, most education institutions should make allowances and have exemptions from the exam on medical grounds, or have special conditions to allow you to take it on another day.

Remember to try to avoid seizure triggers
such as sleep deprivation, stress and excessive caffeine or stimulants.
 
My 11 year old is really sensitive about the seizures she has experienced (she wet her pants at school) and won’t talk with me about them. She gets really upset if anyone broaches the subject, even the doctor. I have tried everything and am at a loss to know how to help.

Your daughter is at a difficult age and is probably too upset and embarrassed to discuss her seizures at this point. A possibility is to seek another person around her age, who also has epilepsy, and is willing to talk about it with your daughter – either on the phone or online. Just knowing that she is not alone and others experience the same difficulties, feelings and issues may help. You may want to contact Epilepsy Action Australia
to see if we can put someone in touch with your daughter.

Alternatively, we run camps and weekends away at times, which is another way your daughter can meet other people with epilepsy around her own age. There are also many forums online about epilepsy which are listed in the services
section of our website.

If her school has a school counsellor, then see if your daughter is interested in speaking to him/her instead.
 
My child is taking a new drug that seems to be affecting his learning and word finding. I’m pretty sure it’s the drug because it has coincided with starting it. Can this happen?

All antiepileptic drugs have some side effects and different people have a different response to many drugs. Usually after the initial few weeks, side effects should lessen or disappear. Unfortunately there are times when a drug has unacceptable or ongoing side effects for that person, and it usually means it needs to be changed.

If you feel the medication is affecting your son’s learning and daily life, then you should speak to your neurologist to review it.
 
The side effects of my child’s antiepileptic drug are causing insomnia. We have just been given a script for Melatonin from the paediatrician. Can you tell me a bit about it?

Melatonin is a hormone that is produced in the brain. Melatonin levels vary in 24 hour cycles and are controlled by our body clock. Melatonin appears to be important in helping regulate the internal body clock’s cycle of sleep and wakefulness. Melatonin is used to treat insomnia. It comes in a slow release form to last throughout the night, much like the naturally-occurring melatonin. All melatonin tablets need a doctor’s prescription in Australia.

Melatonin use in children appears to be safe and works well in the short term. Long term use is only appropriate if there is a specific sleep disorder.

Side effects in children are very rare. When people report them, it is not yet certain if they are caused by melatonin or by something else. You should talk about this with your doctor.

For more information go to the Sleep Health Foundation website.
 
My son seems to yawn all day and always be tired. Could he be having seizures at night?

Your son’s excessive daytime sleepiness could have many causes. His doctor should be able to help you determine if he is experiencing night seizures or if epilepsy medication side-effects are the cause of the sleepiness. If not, there are a number of sleep disorders such as sleep apnoea, hypersomnia, narcolepsy, or restless legs syndrome
. Ask your GP for a referral to a sleep specialist.

You could also try the following for a better night’s sleep:

  • Keep a regular bedtime and before bed try relaxation techniques (yoga, deep breathing) to reduce anxiety. A light snack of warm milk or foods high in the amino acid tryptophan like bananas, may also help.
  • Avoid day naps, cola and other fizzy drinks or heavy, spicy or sugary foods 4-6 hours before bed.
  • Exercise regularly, but not within 2 hours before bed, to help deepen sleep.
  • ‘Clean up’ the sleep environment – use a comfortable bed, block out noise and light, don’t use the bedroom for gaming or watching TV.
  • Do not use too many blankets as overheating might wake him up and keep him awake.

 
Why was I told by the specialist to watch my other children for seizures after we were told that my youngest child had his seizures set off by flashing lights?

If your child has seizures that are set off by flashing lights, then he has what we call photosensitive epilepsy. This type of epilepsy has a genetic
link and is considerably more common in relatives of the affected persons. So it is likely your specialist is thinking there is a small chance that one of your other children may also develop photosensitive epilepsy.
 
We are having trouble getting any clear answers from our paediatrician and unsure of what pathway to take next? Can I take my child to see a neurologist?

There are many paediatric neurologists around Australia, and this would probably be the next step to take. There are also paediatric neurologists that specialise in epilepsy (epileptologists), so if you can see an epileptologist
, then this is even better.

Your paediatrician or GP will need to write a referral.
 
What is an IEP?

Any school child who receives special education and related services must have an Individualized Education Program (IEP). The IEP creates an opportunity for teachers, parents, school staff and students (when appropriate) to work together to improve educational results for children with disabilities or learning needs.

To create an effective IEP, parents, teachers, other school staff and often the student must come together to look closely at the student’s unique needs. These people pool knowledge, experience and commitment to design an educational program that will help the student be involved in, and progress in, the general curriculum. The IEP guides the delivery of special education supports and services for the student with a disability. The IEP helps the child set, and attain, his or her chosen goals.