This is also known as:
- early-onset benign partial epilepsy with occipital paroxysms
idiopathic susceptibility to early-onset benign childhood seizures with electroencephalographic (EEG) occipital spikes.
This is a recently described epilepsy syndrome. It is said to be a relatively common type of epilepsy affecting about one in seven or one in 10 of all children with epilepsy. The most common age it begins is three to five years but it may affect children aged as young as one, and as old as 15 years of age.
Boys and girls appear to be equally affected. It does not usually run in families. However, more research needs to be undertaken in this epilepsy syndrome.
Early-onset benign partial epilepsy with occipital paroxysms (Panayiotopoulos syndrome) is different from the epilepsy syndrome called ‘benign epilepsy of childhood with occipital paroxysms (BECOP)’. In this other syndrome (BECOP), the children are usually older and the seizures consist of problems with vision and flashing lights and are usually accompanied by headaches.
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) and there may be a lot of sweating and drooling (these 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. Very often the seizure will then end by jerking movements (called clonic movements) down one, or occasionally both, sides of the body. After the seizures the child will be upset and may sleep.
Over two thirds of the seizures will occur 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, and after the child has woken up, they will be back to normal.
The seizures are very infrequent. Many children will have just one or two seizures while others may have four or more.
Diagnosis
The diagnosis of early-onset benign partial epilepsy with occipital paroxysms or Panayiotopoulos syndrome is made on a detailed account of the child’s symptoms.
Important features in making the diagnosis are: the episodes usually occur during sleep and are nearly always accompanied by autonomic features and vomiting. The child’s age is also important, as most seizures occur in young children.
The electroencephalogram (EEG) often shows abnormal activity (called spikes) on both sides of the brain and 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 (CT and MRI) are usually normal.
Treatment
Not every child needs to be given anti-epileptic drugs. This is because the seizures occur infrequently and because most children will stop having seizures soon after the seizures start.
An anti-epileptic drug is usually prescribed if the child has had more than three or four seizures and particularly if the parents are worried.
The anti-epileptic drugs most commonly used are sodium valproate (Epilim) or carbamazepine (Tegretol); the newer drugs may also be effective, but this is not known for sure.
Prognosis (outlook)
Most, if not all children with early-onset benign partial epilepsy with occipital paroxysms or 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 two or three years after the seizures first started. This is called a ‘remission’ of the epilepsy. The remission of the epilepsy is spontaneous (it happens of its own accord) and is not affected by the use of anti-epileptic drugs.
Finally, it seems to be very rare for a child with this type of epilepsy to have seizures either continuing into, or re-starting, in adult life.
Support organisation
Contact a Family, 209-211 City Road, London, EC1V 1JN, telephone 0808 808 3555, http://www.cafamily.org.uk/
Epilepsy Action is indebted to Dr Richard Appleton, a Consultant Paediatric Neurologist who specialises in children’s epilepsy, and to Dr Rachel Kneen, Consultant Paediatric Neurologist and Dr Stewart Macleod, Specialist Registrar in paediatric neurology, at Alder Hey at Alder Hey Children’s Hospital, Liverpool, who have kindly prepared the information on this page.
Because this page is written by an epilepsy healthcare professional and not by Epilepsy Action, it falls outside the requirements of the Information Standard. This is why the Information Standard logo is not shown on this page.
This information is exempt under the terms of The Information Standard.
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Updated July 2009To be reviewed March 2012
Comments: read the 10 comments or add yours
Comments
My son has suffered with this for 18 months now, since he was two, with an episode on average every 8 weeks. Very upsetting to see him but they always occur in his sleep and as he has a very rare genetic syndrome, we have come to see these seizures for what they are, a temporary upset to his otherwise happy and normal routine. They are extremely distressing at the time but after 2 - 3 days he is ok again and back to being a happy, wonderful little boy. And we give thanks avery day, because it could have been a lot worse.
Recently I discovered some information on Panayiotopoulos sydrome off the internet. From the ages of 7-11 I suffered from seizures, however I was never diagnosed with any specific syndrome or disease. I am now a healthy 17 year old and after contacting Dr. Panayiotopoulos himself (the doctor who discovered and named this syndrome) I believe that this is the condition that I had as a child. I suffered from many of the symptoms described, most notably vomiting and fixed staring in one direction, however I was never prescribed any medication as my paediatrician was wary of doing so. When I first began to have seizures they would often be violent and prolonged however as time went by these became progressively shorter and I would also be conscious for them. I am aware that every case if different but I am personally happy that I was never prescribed any medication as I feel it would not have been beneficial in the long run. If I could offer any advice to children and families affected by this syndrome is to try and keep calm in the face of it (which I know is often hard to do) and to not let it prevent you doing the things you want to do, if you do you will regret it later. I am now applying to university and I am planning to do a course involving neuroscience so that I am able to better understand syndromes like this.
My daughter was diagnosed with Panayiotopolous syndrome a year ago. As she was having monthly - 6weekly seizures she has been put on medication (epilim) as she was allergic to tegretol. She had her first seizure when 4 years old and she is now 6. She has just had an MRI scan last week and the results have come back normal. I feel it is now a waiting game to see if the seizures continue or if she grows out of them.
So lovely to see your comment on here and congratulations on going to university. My daughter who is four started having seizures nearly a year ago and had a status seizure last December and was hospitalised from it. To say we are very worried parents is an understatement. Evie is a happy, bouncy and intelligent little girl and we are so proud of her. Although we haven't had a clear diagnosis of what type of epilepsy she has after researching on the Internet I am really convinced she has this syndrome also. Her main ictal symptoms are deviation of her head and eyes to one side, retching and/or vomiting, very dilated pupils, sweating and excess of saliva only one of her seizures has generalised and have been mainly partial with the head and eye turning. They have so so far only been whilst she is asleep. She is much to my better judgement being treated with medication however it has given us the much needed peace of mind and seems to cope with the medication very well with little or no side effects. We are hoping to wean her off if she stays seizure free for two years. I would love to hear more from you or anyone else who has any information about this syndrome.
My son was diagnosed with this condition last Friday. The info on this site has been really enlightening. Although brief- it captures key areas. My son has been prescribed Carbamazepine because he was getting the seizures more and more frequently. He first had one in Dec 2010, then Dec 2011- after which he had two in Jan 2012 and three in Feb 2012. Thank God, he has now been diagnosed. It was very distressing for all of us in the family (not least him). Unfortunately- he has behavioural problems and learning difficulties- so our journey has just begun. He'll be eight years old in May
My daughter has just been diagnosed with this type of seizure today, she had a week of having two or three a day, she has not been prescribed any medication yet though. But my worry is how to tell when she is having an episode in her sleep, as she only had one seizure which included the clonic movements and this was while she was awake, on the other occasions the symptoms were more of a fainting episode and sickness feeling, also pins and needle in the face
It’s a worry for parents when their child has seizures during the night. Some parents use bed alarms to alert them if a seizure happens.
You can get bed alarms that sense different things, such as unusual sound, movement or moisture. With Panayiotopoulos syndrome the child tends to drool or vomit, and most seizures usually end with a jerking movement. You could see if there is an alarm that would be suitable for your daughter’s symptoms. For details on bed alarms, please contact the Disabled Living Foundation. They have details on a wide range of bed alarms, and hopefully there will be a suitable one for your situation.
If a bed alarm isn’t suitable or available, some parents we’ve spoken to, have used a baby intercom that can pick up sound. This may be a noise the child makes during their seizure. Or there could be something on their bed that makes a noise when the child moves. Someone has told us about tying small bells on to the bed.
You could talk this over with your daughter’s epilepsy nurse or doctor. They may have some other ideas too.
Diane Advice and Information Team
After posting here back in march we have now had the official diagnosis and as I suspected it is panayiotopoulos syndrome. Unfortunately despite being on the highest dose of carbamazapine our 4 year old daughter has continued to have seizures once a fortnight all during her sleep within the first hour of falling asleep. These have however become a little milder and she has not vomited during one for a while and it is mainly head and eyes etc. they have been lasting about 6-8 minutes! When she wasnt on medication the seizures were only every 8 weeks or less????! Does anyone else have experience of a child with this syndrome having frequent seizures and/or continuing to have them whilst on anti epileptic medicine?? I would love to hear from someone as I feel really nervous as most sites state that the seizures are infrequent and only 1 or 2 over the whole course of the condition. Kindest regards
Hi Lindz - our son was diagnosed 3 years ago with benign occipital epilepsy - we are in the US so we could never get our neuro to diagnosis his episodes as PS (even though it fits him to a T). But I just wanted to say we took him off Keppra after 8 months because the seizures were getting more frequent (the higher the dose, the more seizures). As our neuro explained, some medications suppress the wrong part of the brain, thus allowing the seizure threshold to be even lower. So that medication is not targeting the right part for your child. We were told it would be lots of trial and error until we found the right drug. I didnt buy it and took him off everything. We were doing awesome until about 2 months ago. He was seizure free/medicine free for almost 2 years. And within the past 5 months he has had 2. We are not sure if this has progressed, or migrated to something else, but it is frustrating all over again. I still dont think I will do medication as he is still growing and developing. neurologically. Our neuro also forewarned us that often times it gets worse before it gets better - reassuring, huh?! Hang in there!
Also wanted to mention we have got a video baby monitor so we can see her in the evening and when she's in bed. I can honestly say it has been a god send and I would recommend buying one. It cost around £100. Hope this is helpful.