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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 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 22 comments or add yours

Comments

My 8 yo son has cae he had been on zarontin syrup 7.5 mls twice a day .But over the last month he has been having more siezures and even been sick and has started to get hot red ears every si often is this normal .He also goes very pale and gets grey looking skin under eyes .is this normal .I am worried .ne help or advice would be great thanks

Submitted by claire on

Hi Claire
I can understand that situation would cause you concern.

Your son’s symptoms aren’t listed as possible side effects of Zarontin. But it would certainly be a good idea to find out why this is happening for him.

I would suggest either making an appointment with your GP or ideally contacting the epilepsy nurse if you have one. Or the paediatrician if you don’t.

I do hope things improve for him very soon.

Cherry
Advice and Information Team

Submitted by Cherry, Epileps... on

Hi, im from indonesia
This link is bery usefull for me. Big thanks.
I want to ask you some questions
I think my 6 yo daughter have an epilepsy.
It started 3 months ago, when she almost slept, than her eyelid flickering, and her upper body was convulse, if my words not wrong. It was like her upper body vibrating. I than pray for her, didnt think about epilepsy.
Then, yesterday, she got a same symptom. When she get slept at night, suddenly, i see her eyes flickering again, no convulse, but her breath sound roughly and it just 20-30 sec.
This night, same pattern, when she is going to sleep, almost sleep, suddenly, she sit on her bed, but her eyes flickering, cant talk, little spittle on her mouth, 20-30sec, and after that she is crying. She said that she had a nightmare.
Can u give coment for this? Is it an epilepsy too?
How about the prognosis?
Can my daughter get free from it?

Submitted by Eunike on

Hi Eunike

Seeing this happen to someone you love must have been difficult for you. It is good that you are trying to find out what might have caused this to happen to your daughter.

Epilepsy is different for every person. Sometimes a child does grow out of their epilepsy, but for some people it is a lifelong condition. Some of the things you have described can happen to a person when they have a seizure, but this does not mean she has epilepsy. The only person who can diagnose epilepsy is an epilepsy doctor. Maybe you could ask your family doctor to help you find one in the country you are living. This will help you to try to find a cause and get the best treatment for her if she needs it.

You may also be able to find support and information from the Indonesian Epilepsy Association.

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen@Epilepsy ... on

My 12 year old daughter has complained for a few years that she can't remember short periods of time or a teacher will be looking at her expecting an answer but she can't remember being asked a question but I thought she was just daydreaming. The other day, I watched her in a ballet class. The music came on but she just stared into space for about 10 seconds while the music played. Then she suddenly looked around & joined in the dance. Then yesterday she said she had her hand up in class & then suddenly the teacher was telling her off for daydreaming. Apparently she had been asked a question but couldn't remember being asked it. I've tried to make an appointment with the doctor but they said they can't see her till next week. Does this sound like CAE? I'm worried that, because I didn't take her seriously, I have made things worse.

Alison Calvert

Submitted by Alison on

Hi Alison
Thank you for your question.

It’s good that once you noticed these events you arranged to see the doctor. If it is a type of epilepsy, you will not have made things worse. With absence and focal seizures it can be difficult to detect them when you’re not looking for them.

As trained epilepsy advisers, we can give general information on epilepsy and related issues. But we’re not able to diagnose your daughter’s symptoms. So it would be best if you, the school and your daughter keep a diary of her events. This will be helpful when you see the doctor. If they think it might be epilepsy, they will usually arrange for your daughter to see an epilepsy specialist at the hospital. This is to make sure she gets the right diagnosis. You may wish to view our information on diagnosing epilepsy before seeing the doctor.

I hope all goes well for your daughter. I’d like to know how she get on at the doctors.

You can contact me either by email helpline@epilepsy.org.uk or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Also 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.                                                                                                                                                                  

Regards
Diane Wallace
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

I have almost 3 year old twin boys who have both had 1 febrile convulsion each in the last year. Back in the summer we were in the car and when we parked up to get out one of them was just sat there staring & unresponsive, we don't know when it started (as he was in the back) but it continued for about a minute. Then he snapped out of it & started chattering away. Tonight my other son had gone to sleep & I suddenly noticed on the video monitor that he was sat up. I went up & his eyes were open but he didn't respond to me. I turned him to face me & still no response but he seemed a little shaky. I picked him up & gave him a cuddle & laid him back down & he went straight to sleep. Do these sound like absence seizures? I have epilepsy, only diagnosed when I was 38. I don't know if I had any seizures when I was a child & I have no-one alive to ask.

Sorry for the long post xx

Submitted by Karen Convery on

Hi Karen
It sounds like you are doing a really good job of keeping an eye out for how your children are.

I think what you have described sounds enough like seizures for it to be worth discussing with your doctor. I know these episodes only tend to last a very short time, but if it were possible for you to video one, that would be really helpful in diagnosis.

I hope that helps.

Cherry
Epilepsy Action Advice and information Team

Submitted by Cherry, Epileps... on

Is CAE actual epilepsy or just episodes? Silly question really but am new to all this as my little one has just been diagnoised so still trying to figure it all out

Submitted by Christina maria on

Hi Christina
There is a lot to take in when your child gets a diagnosis. CAE is definitely epilepsy. But the ‘symptoms’ are absences. And once someone is on the right dose of the right medicine there is every chance that the absences will stop.

And as you can see, for most children who are diagnosed with CAE, it is very likely they will grow out of this during puberty.

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

Cherry
Epilepsy Action Advice and Information team

 

Submitted by Cherry, Epileps... on

Thank you so much for your reply. He also has hydrocephalus thats treated with a vp shunt. It certainly is alot to take it x

Submitted by Christina maria on

Hi my 6year year old daughter having absence epilepsy started when she was in nursery she is on zarontin syrup I m just worrying about her health since she is taking medicine she become thinner her weight is still same as last year she always complain about headache and legs pain is this because of medicine?she was really chubby girls but now she is to much slim if u tell me my answer I ll be grateful to you.thanks

Submitted by Safina iqbal on

Hi Safina
Weight loss and not feeling as hungry as usual are possible side-effects of Zarontin syrup, so your daughter’s weight changes could be down to her medicine. It’s possible the headaches and leg pain could also be connected, but we’re not medically trained so we can’t say for sure. It’s worth talking to your daughter’s doctor or epilepsy specialist about any unusual symptoms or changes to her general health. They will be able to look into whether it could be down to her medicine.

I hope this helps. If we can be of any more help, please feel free to contact the Epilepsy Action Helpline.

Grace
Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

Hello again
Thank you for your response. I have finally managed to get an appointment for my daughter to see a specialist. The GP was so supportive & agreed with me that it didn't sound right. We then waited 2 months for an appointment. It happened to be the week I started a new job, so my husband took my daughter. He told the consultant what I had said, but confessed that he'd never seen an episode (he works a minimum of 6 days a week, so he's often not around). My daughter is embarrassed at the thought of having epilepsy & played it down, saying she was 'just thinking', which I know is not the case, as I have witnessed it. The consultant has referred her for an eeg but has written a letter, also sending me copies for the school & drs surgery, saying that it's highly unlikely that Maisie has anything wrong with her at all.
Obviously, if this is actually the case, that would be fabulous, but I think the consultant has completely ignored the fact that both the gp and I felt worried enough about her symptoms to refer her to hospital! I'm really frustrated!
The one positive is that they are still going to carry out the tests, but the consultant said that is only because Maisie is a gymnast, & does a lot of tumbling. Thank goodness that is the case, otherwise she would have been discharged straight away.
I shall keep you informed as to the outcome.
Alison

Submitted by Alison Currant on

Hi hope you don't mind but was just wondering how your daughter got on. My daughter has what I think are absence seizures. She sounds just like your daughter. She just blanks out in mid sentence just for a few seconds sometimes i have to remind her what she was saying sometimes she just carries on. It's not affecting her school work , the teachers have never noticed anything. The only time she did something odd at school a group of teachers just laughed at her and told her to wake up! She's 13 now but terrified of doctors so I've never forced her to go as it's not causing any problems. I have said I will take her the minute it does cause any problems or when she's 16 and not grown out if it. I don't fancy her taking medication with side effects when it's not a huge problem! Hope you don't mind me asking how you got on

Submitted by Marianne smith on

The other day my little grandson was standing in the living he suddenly went pure white and very vacant lifted him on to the settee and the colour came back again and at the sides of his face was very blotchy and his arms were limp and his eyes were blinking .
He then fell asleep and was very warm soaking with sweat he has had a few other episodes were he would be white and have blue lips and mottled skin these put down as blue episodes could these be absences very worried as I had a daughter who died aged 24 when she had a seizure shad epilepsy .Sorry for long post

Submitted by Ellen on

Hello Ellen

This sounds like it would have been scary for you.

It doesn’t sound like an absence seizure, but some of what you describe sounds like a focal seizure. Although we’re not saying it is this type of epilepsy, it seems similar to what happens to people who have Panayiotoupulos Syndrome.

When someone is worried about a child we always recommend that they get them checked out by a doctor. It would be worth you all talking to your grandson’s GP about what you have noticed. The GP can then explore what has been happening, and make a referral to a specialist doctor if they feel it is needed.

We would be interested to hear how you get on.

Karen

Epilepsy Action Helpline Team

Submitted by Karen-Epilepsy ... on

My grandson attends the paidiatrian for the blue episodes and for low iron but will speak to GP first thank you for your reply will keep you posted Ellen

Submitted by Ellen on

My 7 year old daughter has been seen by the Gp and she has been referred to see a specialist for CAE.
The appointment isn't until for sometime yet :(
I just wondered can anyone give us insight into what the specialist will do on this 1st appointment. I'm assuming they will want a history but that's about it. Will any tests be offered or a trial of medication?
In the meantime my daughters seizure seem to be getting more frequent and lasting longer. Her behaviour since the increase of these seizures seems to have got v challenging too.
Any advice and help would be gratefully received. Just be nice to know some people going through the same as it feels quite a lonely place at times.
Many thanks in advance
Jenny

Submitted by Jenny on

Hi Jenny

How you are feeling is understandable. It can be a very worrying time waiting for appointments.

We have information on our website about getting the right treatment, questions to ask the specialist and tests for epilepsy

If it will help you to talk to someone, you can phone Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

We also have various ways you can contact others who will understand what you are going through. We have our local groups, including coffee & chat groups and we have our forum4e online community,  facebook and twitter.

Regards

Diane

Epilepsy Action Helpline Team

Submitted by Diane-Epilepsy ... on

My 16 month granddaughter today lolled her head back whilst I was drying her from a swimming lesson and her eyes rolled almost losing all the pupil. it lasted about 4 seconds. She did not go rigid or twitch but was subdued and quiet for the next 5 minutes. I cuddled her and we tested her blood sugar (my daughter is diabetic) but she was 5.1 so we ruled out hypoglyceamia. My daughter said it had happened the previous week with her eyes rolling but she didn't associate it with a problem. We are monitoring her and she is going to ask the health visitor re toddlers eyes rolling . Just wondered if, without any other symptoms this can be sign of some form of epilepsy but appreciate you cannot offer a diagnosis as such. To test a toddler would a EEG be suitable?

Submitted by Gill capaldi on

Hi Gill

It would be a good idea for your daughter to take her to the GP to see if they want to refer her on at this point.

And yes it is possible to give babies and young children EEGs.

Here is all our information about babies and epilepsy.

It would be useful for your daughter to monitor how often this is happening and getting an exact description of what is happening before, during and after these episodes. And if the doctor does suggest your granddaughter seeing a paediatrician, it would be really helpful to see if it is possible to catch one or two of these episodes on video. I know this might feel strange and difficult. But it is definitely the most useful thing if the paediatrician is trying to make a diagnosis.

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

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by Cherry, Epileps... on