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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
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 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

My 8 year old adopted daughter has PVL. It has very little impact on her day-to-day functioning and there are no outward signs of it at all. She had been discharged from community paediatricians approximately 3-4 years ago. We were told by medical professionals that she may be at increased risk of developing epilepsy in the future. A couple of days ago she had what I believe was an absent seizure. She literally froze for about 10 seconds, was completely unresponsive and was just staring straight ahead. It happened just seconds after she had woken up and as I was helping her get out of bed. My instinct is that I should make a GP's appointment to discuss this now rather than wait and see if it happens again. Could I have your views please?

Submitted by Kirsty on

I was diagnosed with epilepsy around the age of 6, at 12-13 years old i was given the magnificent news that i was no longer epileptic. At the time i wasn't exactly sure what was going on but now that i am older i wanted to learn more about the battle that i fought and won, thank you for helping me educate myself and help others in learning about epilepsy
Keep teaching and educating the world because you truly help us learn
Thank you

Submitted by Rachel D on

Hi, we have 6 year old twins...the youngest started having absences about 6 months ago....after being our GP, paediatrician and neurologist we have been advised she has epilepsy....we are obviously upset and worried...we have another appointment with senior neurologist in three weeks to get the final result...

Submitted by Karen on

My granddaughter is 4yrs 8 mths and is having trouble at school as to not paying attention. She started a few months ago, stopping what she was doing and her eyes cross and roll, when told she is doing it she stops. Is this a sign of petit male seizure?

Submitted by Pauline on

Hi Pauline – Its not possible for us to say what these episodes are. But it would be helpful to get in touch with your granddaughter’s GP and explain what you are noticing. If you can, video the episodes and keep a diary of when they happen and take this along.

Regards

Mags

Epilepsy Action Helpline Team

Submitted by rich on

Hi Karen

It can be very upsetting and worrying when you first hear that your child has epilepsy. You might find our information for parents helpful, but if you have any questions or just want to talk things through please don’t hesitate to call us on the Epilepsy Action Helpline, freephone 0808 800 5050.

Best wishes

Grace

Epilepsy Action Helpline Team

Submitted by Grace-Epilepsy ... on

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