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Panayiotopoulos syndrome

It is not known how common this syndrome is. It may affect between 1 in 10 or 1 in 20 of all children with epilepsy. The most common age it happens is 3 to 5 years, but it may affect children as young as 1, and as old as 10 years. Boys and girls appear to be equally affected. It does not usually run in families. More research needs to be undertaken in this epilepsy syndrome.

Panayiotopoulos syndrome is different to the epilepsy syndrome called ‘benign epilepsy of childhood with occipital paroxysms (BECOP)’. BECOP is sometimes called Gastaut syndrome. Gastaut syndrome is less common than Panayiotopoulos syndrome. In BECOP, or Gastaut syndrome, the children are usually older, between 6 and 13 years. The seizures include problems with vision and flashing lights and are usually accompanied by headaches. The seizures are briefer in duration than in Panayiotopoulos syndrome. 

Other names for Panayiotopoulos syndrome

• Early-onset benign partial epilepsy with occipital paroxysms
• Idiopathic susceptibility to early-onset benign childhood seizures with EEG occipital spikes

Symptoms

The main seizure type is known as ‘autonomic’. The child may have a sudden change in behaviour and then they become pale, complain of feeling sick and will usually vomit. The pupils of the eyes often become very large (dilated), the face becomes flushed and there may be a lot of sweating and drooling. The eyes may fill with tears, even though the child is not crying.

All of these symptoms are the ‘autonomic’ features. The child may become unresponsive and their head may turn and become fixed to one side. It may remain turned to the side for many minutes, even up to 20 or 30 minutes. Very often the seizure will then end with jerking movements (called clonic movements) down one, or occasionally both, sides of the body. After the seizure the child will be upset and may sleep.

Over two-thirds of the seizures happen in sleep. The sleep may be during the night or during a day-time nap. The seizures are often long-lasting, and may last 20, 30 or even 60 minutes. Even following the long seizures, once the child has woken up, they will be back to normal. The seizures do not usually happen that often, only once or twice every few months. However, some children may have much more frequent seizures.

Diagnosis

The diagnosis of Panayiotopoulos syndrome is made on a detailed account of the child’s symptoms. Important features in making the diagnosis are that the episodes usually happen during sleep, and are nearly always accompanied by autonomic features, and vomiting. The child’s age is also important as most seizures happen in young children.

The EEG (electroencephalogram) often shows abnormal activity (called spikes) on both sides of the brain. This is usually towards the back of the head (in the part of the brain called the occipital lobes). Sometimes the EEG may only show the abnormality if it is carried out when the child is sleeping. However, the EEG may also be normal in up to a quarter of children with this epilepsy syndrome.

Brain scans such as CT (computerised tomography) and MRI (magnetic resonance imaging) are usually normal. Rarely, some children with Panayiotopoulos syndrome have been reported to have had abnormal brain scans. This is why more research is needed in this particular epilepsy syndrome. 

Treatment

Not every child needs to be given epilepsy medicine. This is because the seizures happen infrequently and because most children will stop having seizures within a few months after the seizures start. Epilepsy medicine is usually prescribed if the child has had more than 3 or 4 seizures and particularly if the parents are worried. The medicines most commonly used are sodium valproate (Epilim) or carbamazepine (Tegretol). Lamotrigine (Lamictal) or the newer medicines such as levetiracetam (Keppra), may also be effective, but this is not known for sure.

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

There may be research studies going on in this epilepsy syndrome. Your child’s hospital doctor will be able to discuss this with you.

It will be very unlikely that a child with this epilepsy syndrome will have prolonged or repeated seizures. However, if this does happen, your child’s hospital doctor (paediatrician or paediatric neurologist) will discuss a ‘rescue’ or emergency care plan with you to treat any prolonged or repeated seizures.

Outlook

Most, if not all children with Panayiotopoulos syndrome, will show normal development in the first few years of life. Most will also have no learning or behaviour problems. Even the longer seizures do not cause any problems, and it is not thought that the seizures are dangerous.

Nearly all children will stop having seizures within 2 or 3 years after the seizures first start, sometimes earlier. This is called a ‘remission’ of the epilepsy. The remission of the epilepsy happens of its own accord and is not affected by the use of epilepsy medicines. Finally, it seems to be very rare for a child with this epilepsy syndrome to have seizures either continuing into, or re-starting, in adult life.

Support 

Contact a Family
Freephone helpline (UK only): 0808 808 3555
Website: cafamily.org.uk
Email: info@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 the child has 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: 
S022.03

Epilepsy Action would like to thank Dr Richard Appleton, consultant paediatric neurologist at Alder Hey Children’s Hospital, Liverpool, UK for preparing this information.

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

  • Updated November 2016
    To be reviewed November 2019

Comments: read the 6 comments or add yours

Comments

Hi, my son started when he turned 3yo and has had four seizures since and he is now 4yo. It started one day when he had a nap, he woke up being sick and then his head turned to the right and his eyes rolled to the right. He was responding to my questions but also looked very dazed, sweating and drooling. His EEG and MRI scan came back all clear but it still plays on our mind every time he sleeps. We set up cctv in his bedroom so we can watch him at all times, he is very restless in bed all night but he has not had a seizure for 2 months now. I filmed his seizure which lasted 50 minutes, the doctors said the video gave them the best evidence to pinpoint the condition as Panayiotopoulos syndrome and are now using the video for training purposes. Heres the thing i am realising now, his temper/attitude has worsened since the seizures started and the doctors want to put him on medicine (which i am against). Does anyone else give there child medicine for this and what medicine have you been prescribed? Another thing i want to clerify is my son was carried/born breach, this wouldnt have anything to do with it would it? thanks

Submitted by James Gargan on

Hi James

Thanks for your message. It must be hard to see your son’s behaviour change since his seizures started. We often speak to parents who are worried about their child’s behaviour so you are not alone. You might find it helpful to read our information about epilepsy and behaviour problems.

It’s understandable that you want to know if there’s a cause for your son’s epilepsy. Sometimes epilepsy is caused by brain damage that happened during a difficult birth. But in around 6 out of 10 people doctors can’t find a cause for their epilepsy.

Do the doctors want to put him on epilepsy medicine or medicine to help with his behaviour? Children with panayiotopoulos syndrome don’t always need treatment with epilepsy medicine but doctors might recommend it if they have had more than three or four seizures. The medicines most commonly used are sodium valproate (Epilim) or carbamazepine (Tegretol). The newer epilepsy medicines may also be effective, but this is not known for sure. We can’t offer any advice on medicines to deal with behavior, but hopefully you will get some replies from other parents here. You could also try forum4e. It’s our online forum for people with epilepsy and their families.

It’s good to get opinions from other parents, but it’s important to remember that every child is different and medicines that suit one child may not suit another. If you have any concerns about your son taking medication it’s worth discussing your worries with his doctor.

I hope this information is useful. If you have any other questions feel free to contact the Epilepsy Action Helpline.

Grace
Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

James,
I had all of the same with my Daughter. I live in Texas and my doctors all wanted to medicate my daughter. I had to fight a long and hard battle but won by finally reaching out to non other than Dr. P himself. Across the world from me with today's technology he was able to review my records and tell me his thoughts. For the record my daughter is very healthy having had her first one of these when she was 3 and he last one a year ago when she was 11 for a total of 6 in her life. She has now what seem to be Auras where she has the feeling of dejavu followed by extreme nausea and sometimes headaches then she sleeps for hours. This has happens about three times a year.

Submitted by Kimberly Molder on

Hi. My 5 yr old daughter has had 2 seizures. Except for vomiting, she has almost all of the characteristics of this seizure type. Her first seizure was initially thought of as a stroke (until CT and MRI came back ok) b/c she was flaccid, incoherent, posturing, eyes fixed up and to the left, drooling, left sided paralysis, neck rigid and head turned to left, chewing motion, both happened about 15-20 mins after falling asleep. Right before she became incoherent and flaccid during the first one, she called to my husband from her room where she was napping and she was standing in the middle of the floor, he said her eyes were unfocused and she held her sternum area and said "it's deep, daddy, it just broke" and at the start of the second one, we saw her "chewing" after falling asleep and when we picked her up she was mumbling, "I feel gross, I feel gross" and then eyes fixed up and to left again, as well as head to the left, body flaccid and she was unresponsive. First seizure lasted 90 mins in this way before convulsions began, Second seizure was this same presentation until we gave a rescue medicine after 30 mins of this presentation and then she fell asleep. As I read about this syndrome, I feel so certain this is what she has. Her EEG shows Occipital lobe spikes in both hemispheres. The only thing that I'm not sure about is that in the 8 or so weeks leading up to each seizure, she had a drastic and scary personality change. Profoundly sad, aggressive, total mood dysregulation, said that her body was dying, her insides were dead, she wanted to die, etc). Don't see anything in this syndrome that would account for that change. Incidentally, the neurologist does not the the mood/personality change is related to the seizure activity at all. I could not disagree more; particularly given that those symptoms all disappeared within days of each seizure. She is now on a daily medicine (Trileptal) but if what I read is true, sounds like she may not need to be on a daily medicine - maybe just treat with rescue medicine if/when she has another one. Any advice would be greatly appreciated. Would like to find an expert to review her information if possible. Thanks for reading!

Submitted by Amanda Janulis on

Dear Amanda
It sounds like a very difficult and worrying time for you and your daughter.

Some children have hard to classify epilepsies, that’s why it’s important that your daughter is being seen by an epilepsy specialist. If you let me know where you are, I can see what service are near you. You can see our information about getting the right treatment and care for your epilepsy here.

It’s not ideal to only treat status seizures. It’s best to take epilepsy medicine to stop the epileptic activity so preventing status seizure. It’s possible for seizures that last longer than 30 minutes to cause damage to the brain, or even death. They can also be destressing for your daughter.

Mood and behaviour can alter due to epilepsy its self. When it’s before a seizure this is known as the "prodromal" stage. Mood changes at this time are usually relieved by the seizure. These moods can be brief, or last for hours or days. The best way to treat this, is to try stop the epileptic activity with epilepsy medicine

I hope this information has helped. If we can be of any more help, please feel free to contact us again. You can contact the helpline team directly either by email hwlpline@epilspsy.org.uk 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 Advice and Information Team

Submitted by Diane, Epilepsy... on

My 9-year-old has just been diagnosed with PS. She had one episode a month at the end of last year (Oct, Nov, Dec).
After removing stresses with the help of the school counsellor and doing breathing & relaxation exercises before bed (progressive muscle relaxation) she has been seizure-free!
Amanda, I am glad you mentioned the personality change. Prior to her seizures my daughter was also not herself with depression. I assumed this was the '9 year change' but after reading your comment I am wondering if it was a precursor to the PS.
Hopefully our children will grow out of it soon, it's scary to see.

Submitted by Rooibos on