We exist to improve the lives
of everyone affected by epilepsy

 

Childhood absence epilepsy (CAE)

This is a common epilepsy syndrome starting in early childhood. Absence seizures can happen in many different epilepsy syndromes occurring in childhood and adolescence. This information refers specifically to the syndrome of childhood absence epilepsy.

Symptoms

The seizures of childhood absence epilepsy usually start between the ages of 4 to 7 years of age; rarely the seizures may start under 4, and as late as 8 years of age. They happen slightly more often in girls than boys. They can also happen many times a day, from 10 and up to over 100. They are sometimes divided into ‘typical’ and ‘atypical’ absence seizures.

A typical absence seizure consists of a sudden loss of awareness. The child will suddenly stop talking or what they are doing and stare blankly into space. They will not respond to people talking to them. The seizure is sometimes associated with repetitive, purposeless movements of the fingers, hands or mouth, such as some lip-smacking. These are called automatisms. There may also be eyelid flickering or fluttering.

A seizure usually lasts between 5 and 15 seconds and usually stops as suddenly as it starts, with the child resuming their normal activities.

Absences that last longer than 15 or 20 seconds or that have a lot of automatisms or brief jerks of the head are usually called ‘atypical’ absences.

Absence seizures tend to happen more commonly when the child is bored, sitting quietly or when they are tired or unwell. They happen less often when the child is busy or focused on an activity that they enjoy.

Children with CAE usually develop and learn normally, although uncontrolled absence seizures that happen many times a day may cause some learning difficulties. Sometimes a child’s concentration and memory are thought to be poor before the diagnosis of the childhood absence epilepsy is made – and improves after treatment is started.

Diagnosis

The diagnosis is usually suggested by the history. The doctor may ask the child to hyperventilate (over-breathe) for 3 to 4 minutes while counting out loud and sometimes with the eyes shut. If an absence seizure occurs, the child will stop hyperventilating and will open their eyes. Hyperventilation will trigger an absence seizure in over 90 per cent of children with typical CAE, and is important in making the diagnosis.

An EEG test is useful in confirming the diagnosis. The EEG may also be used to monitor response to treatment. No other tests such as a brain scan are required in CAE. If the absences are not controlled with treatment and continue to happen may times a day, children may need to have a magnetic resonance imaging (MRI) brain scan or genetic tests to make sure the diagnosis of CAE is the right one.

Epilepsy Action has more information about diagnosis.

Treatment

CAE usually responds very well to treatment. The epilepsy medicines of choice are sodium valproate (Epilim), ethosuximide (Zarontin) and lamotrigine (Lamictal). Occasionally a combination of two of these medications may be required to completely control absences. Rarely, the medicines topiramate (Topamax) and zonisamide (Zonegran) might be helpful. Some children may also benefit from the ketogenic diet if their absences are not controlled by any combination of epilepsy medicines.

Information about treatments for children can be found on the Medicines for Children website.

There may be research studies open that are relevant to this epilepsy syndrome. Your child’s doctor will be able to discuss this with you.

Outlook

The outlook of typical CAE is excellent, with the majority of children becoming seizure free as they pass through puberty.

About 70 per cent of children with CAE will have their absence seizures completely controlled with one or two epilepsy medicines.

Approximately 10 per cent of children will develop other seizure types in adolescence, usually generalised tonic-clonic seizures. However these seizures are infrequent and usually respond to treatment with sodium valproate (Epilim) or lamotrigine (Lamictal).

Some children with CAE may also develop other seizure types such as myoclonic seizures (sudden, brief jerks of the head, limbs or body). When looked at in more detail these children will almost certainly not have CAE but instead have a different epilepsy syndrome such as juvenile absence epilepsy, juvenile myoclonic epilepsy, epilepsy with myoclonic absences or an ‘atypical’ absence epilepsy.

Support

Contact a Family
209-211 City Road
London EC1V 1JN
Phone: 0808 808 3555
Website: www.cafamily.org.uk

What is a syndrome?

A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition. In epilepsy, examples of these signs and symptoms would be things like the age at which seizures begin, the type of seizures, whether the child is male or female and whether they have physical or learning disabilities, or both. The results of an EEG are also used to help identify epilepsy syndromes.

If you would like to know more about an epilepsy syndrome, please speak to your doctor. If you would like to know more about epilepsy in general, please contact Epilepsy Action.

Code: 
S016.03

Our thanks

Epilepsy Action would like to thank Drs Richard Appleton and Rachel Kneen (at Alder Hey Children’s Hospital, Liverpool) and Stewart Macleod (at Yorkhill Children’s Hospital, Glasgow), consultants who specialise in children’s epilepsy, who have updated this fact sheet.

This information is exempt under the terms of The Information Standard.

  • Updated February 2016
    To be reviewed February 2019

Comments: read the 16 comments or add yours

Comments

My 6 year old son has been diagnosed with Childhood Absence Epilepsy. We are a week into taking Epilim. He's on a low dose 5ml daily. We only found out 4 days before we saw the consultant that something wasn't right with our son. We pulled in a family favour with the Dr so he was squeezed in. Not much time to prepare or get our heads around it all. We were still in shock to think he could have epilepsy.
What I forgot to ask was is the medication (Epilim) supposed to suppress the seizures completely?
He's still having 3 to 5 a day but they are only lasting 5 seconds now. So we have halved the seizures and reduced how long they are lasting already. We have been given the authority to double the dose next week but unsure if the medication is supposed to stop them completely or just bring it to a level that he can cope with.

Any help or advice would be great.

Submitted by Sarah on

Hi Sarah

 

Thank you for your question.

 

It’s good that you have already seen some improvement in your son’s seizures. The aim of his epilepsy medicine is to hopefully stop all of his seizures. It’s usual for the doctors to start a patient on a low dose and gradually increase it. It can take a few weeks or months to reach the maintenance dose (this is the amount of medicine which is thought to work well at controlling seizures). Starting at a lower dose, then gradually increasing it, allows your son’s body to slowly get used to the medicine. This reduces the risk of side-effects.

https://www.epilepsy.org.uk/info/treatment/anti-epileptic-drug-treatment

 

I hope things continue to improve for your son.

 

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

 

Regards

 

Diane

Epilepsy Action Helpline Team

Submitted by rich on

Hello everyone, I have a 2 and a half year old daughter who is developmentally delay and goes to speech and physical therapy. A few months ago and recently she will stare out and continue what she is doing in a short amount of time. There have been a few times where she will chew on a corner of a pillow in the middle of being staring out or fidgeting with her pull-up too. She goes to her follow up developmental and behavioural clinic next week and I've been told to tell them about it. My daughter yesterday had a staring out but this time she tilted her head up and her eyes were fluttering for a good 10 seconds and then afterwards acted as if nothing happen. Can someone please tell me what this is or whats going on with my daughter.

Submitted by Karalee Henderson on

Hello Karalee 

Being a parent can be so difficult sometimes, even when you don’t face extra challenges such as these.

Although some of what you describe could be experienced by someone having a seizure, I am not able to tell you whether this is a seizure or not.

When someone is worried about a child though, we always recommend getting them checked out. The best thing would be to speak to your GP about what you have noticed. Your GP may then refer your daughter to a specialist doctor who can try to find a cause for what has happened. Getting her checked out may give you some peace of mind too.

If you are able to capture a video of one of these episodes, this can be very useful  to the doctor as they are able to see what you have seen. It may also be useful when you go to your meeting next week. Some people also tell us that keeping a diary of what is happening helps them to talk to the doctors about it.

If you would like to talk about this, or if we can be of any more help, please feel free to get in touch.

Karen
Epilepsy Action Advice & Information Team

Submitted by rich on

when I was a baby back in 1958 I was told later on in life that I had petit mall or now it's called CAE. at two I couldn't walk so I had to have cortisone treatment. by the time I was 7 years old I had my last seizure. because it was congenital i wouldn't pass it on to any children I might have in the future. however, if I married someone with grand mall epilepsy any children I would have would inherit the condition. so in 1986,1989 and 1994, i had three children who are ok no signs of the condition although the doctors had to watch me careful whilst I was in labour with each one, but thankfully I didn't have any seizures. I was told that strobe lighting could trigger an attack so I avoid anywhere that have these. the condition has left me with weakness skills my working memory isn't good and my numeracy skills are not good either. what I'm worried about is that recently I have shown signs of the CAE symptoms might have returned is this possible? sometimes I gaze into space for a few seconds and switch off so to speak. can this return later on in life? if so what do I need to do to be sure? I have been under a lot of stress lately. how do I go about finding out? who do I go and see? is it classed as a learning difficulty? my coordination skills are not good and I can't think of more than one thing at a time otherwise it becomes too overwhelming for me. Any suggestions?

Submitted by susan elizabeth... on

Hi Susan

I can see that would be worrying. It might be a good idea to talk to your family doctor about it. They may well want to refer you back to a neurologist to check what is happening for you. Make sure the GP knows about your co-ordination and other problems as they may also have some thoughts about how to support you with this.

If you do see the neurologist, make sure to check with them whether you have a diagnosis of photosensitive epilepsy. There are not that many people with epilepsy who have this. If you don’t have that diagnosis then you may find strobe lights are not a problem for you.

Here’s our information about memory. Many people with epilepsy have problems with this. Hopefully you will find something useful in there.

Stress is one of the possible seizure triggers people can experience.

I hope you can get a clearer idea of what is happening for you soon. But if it would be any easier to talk about this on the phone do feel free to ring our Epilepsy Action helpline on freephone 0808 800 5050.

Regards 

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

My Daughter is 8 years old and has been having seizures since being 18 months and was diagnosed with epilepsy at 3. She originally had once a month a tonic clonic seizure 99 % of the time at night whilst she was asleep. She no longer has his type of seizure but has around 80 absences seizures a day which last for between 5 - 10 seconds. She is currently on Epilim and lamotrigine these seizures don't appear to be controlled what other options are open to be used by her consultants etc. As all that is currently done is increasing the amount of medication she takes which doesn't appear to be helping.

Submitted by David on

My older daughter now 12 has been having Absence seizures for the past 3 years. We have been only using Lamictal through out this time, the specialist recently increased the dosage to 300mg once a day as we were still seeing them in the morning. So far so good, but he doesn't want to see any for at least a year before the meds are reduced.

We were gutted to learn that our younger girl (5 years) also has them. had an EEG last week. my questions are:

1. As my younger one started earlier will she likely have them till 13-14 or will hers stop 2-4 years after the first episodes?

2. are AS solely genetic (as I had them too) stopped when I was 13ish - only used Epilim?

2. Has any one tried any other alternative treatments successfully, without medicating? I'm very holistic and hate giving kids any type of medication, but I guess its a matter of keeping them safe at school or during activities.

3. have any adults noticed long term side effects?

kind regards.

Submitted by Sanj on

Hi Sanj, 

Thank you for your message, 

Most children with Childhood Absence Epilepsy (CAE) will become seizure free as they pass through puberty, regardless of how old they were when they had their first seizure.

CAE is thought to have a genetic cause, but as far as we are aware it hasn’t been linked to any specific gene as yet.

Some children with CAE can benefit from a Ketogenic diet. However this diet needs medical supervision so we would recommend speaking to a doctor if this is something you are wanting to try. This is because it’s not a natural diet. So the balance of the diet needs to be carefully worked out on an individual basis and vitamins and supplements are needed.

As with any medicine it’s impossible to say how it will effect someone in long term. But lots of people take Lamictal for many years without any adverse effects. It might be a good idea to have a look at the list of side-effects on the patient information leaflet. This way you know what to look out for and can get advice from a doctor straightaway if your daughters experiencany side-effects. It is possible for children with CAE to have lots of absences. And if these aren’t controlled it can have an effect on behaviour and learning. Currently the best way to control these absences is with anti-epilepsy medicine.  

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050.

Kind regards

Regards


Jess

Epilepsy Action Helpline Team

Submitted by rich on

Hello 😊

I'm 18 and I occasionally I experience this weird vision of things being further away than they actually are and even in size and proportion, such as seeing my hand thiner and further away, or people's heads are smaller or bigger than their body. I kind of lose my awareness for about 5 seconds staring into space but then I gain my awareness however the vision distortion is still evident. I do remember experiencing this very often growing up, and during the experience everything is going at a faster pase than it actually is, for example i hear myself or someone else talking faster than in reality and so on.

I don't know if there would be any twitching that took place when I loose my awareness for a few seconds and no family member took this seriously 😂😂

What could this be?

Submitted by Rufaidah on

Hi

That certainly sounds like a disturbing experience for you. I’m not sure it would be related to epilepsy. Though we have heard of people having some similar symptoms. But as we’re not medically trained, we aren’t able to say.

However I do think it would be a good idea to mention this to your doctor, just in case they think it could be worth investigating.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

hi
i'm 24 years old now, i have been having Absence seizures for the past 17 years.
I lose my awareness for about 5-15 seconds staring into space but then I gain my awareness. I do remember experiencing this very often growing up, and during the experience i will not respond to people talking to me. my family and friends told me when the episodes happen i move my hands or mouth, when i gain my awareness i don't remember what i was saying or doing my mind is always blank i don't even feel pain.

Submitted by dagi on

Hi my daughter is 6 and was diagnoised with CAE in March she is currently on 40mg of lamatorgine a day we have seen no seizures for a good 4 months so really happy. We are struggling with her sleep though she doesn't seem to go to sleep very well could this be related to the medication?

Submitted by Leanne Bryant on

Hi Leanne

Thank you for your question. 

Insomnia is listed as a side-effect of lamotrigine. If things don’t improve it may be best to talk to your daughter’s epilepsy specialist to see what other options may be available.

As there is a connection between epilepsy, seizures, medicines and sleep, we have our sleep and epilepsy information that also gives hints and tips for better sleep. 

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards

Diane

Epilepsy Action Helpline Team

 

Submitted by rich on

i am suspicious that my six year old son may have absence seizures. his teacher reported he finds it difficult to stay on task without 1:1 support. he appears 'daydreamy' at home particularly at mealtimes. we are waiting for a paediatrician appointment and we are told this can take up to a year. could any parents share with me their typical journey to having this issue investigated/diagnosed? should i really be waiting a year to see a paediatrician?

Submitted by JV on

Hi JV

Ideally you shouldn’t be waiting for a year for a first appointment. We are aware that the waiting time can vary from one NHS service to another. But there are guidelines for first referrals. 

For people in England or Wales, the National Institute for Health and Care Excellence (NICE) guidelines on epilepsy say that after a first suspected seizure, your son should see an epilepsy specialist within 2 weeks of his GP making the referral.

The NICE guidelines are recommendations, and not law. The actual length of time it takes to see a neurologist for the first time is likely to depend on how many appointments are available and how many people are on the waiting list. But he should be seen within NHS maximum waiting times. In England, the NHS Constitution says people have a legal right to see a specialist and start treatment within 18 weeks of their GP making a referral. In Wales, NHS targets say you should be able to start treatment within 26 weeks.

In Northern Ireland and Scotland the guidelines are slightly different. 

I hope this will help you get your son seen sooner.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm. 

Regards 

Diane
Epilepsy Action Helpline Team

Submitted by Diane on

e-action newsletter

Subscribe to our e-action newsletter and stay informed

Subscribe to e-action newsletter feed