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Panayiotopoulos syndrome

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 difficulties, or both. The results of an electroencephalogram (EEG) are also used to classify epilepsy syndromes. 

Epilepsy Action has more information about seizure types, learning disabilities, and the EEG.

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

Panayiotopoulos syndrome

This is 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 as young as one, and as old as 15 years. 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.

Panayiotopoulos syndrome is different to the epilepsy syndrome called ‘benign epilepsy of childhood with occipital paroxysms (BECOP)’. In 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 my turn and become fixed to one side. It may remain turned to the side for many 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 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, once 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 Panayiotopoulos syndrome is made on a detailed account of the child’s symptoms. Important features in making the diagnosis are that 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 EEG 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 (CT and MRI) are usually normal.

Epilepsy Action has more information on diagnosing epilepsy.

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 soon after the seizures start. An epilepsy medicine is usually prescribed if the child has had more than three or four seizures and particularly if the parents are worried. 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.

Epilepsy Action has more information about treatment.

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 two or three years after the seizures first start. 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 type of epilepsy 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

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Code: 
S022.02

Epilepsy Action would like to thank

  • Dr Richard Appleton, and Dr Rachel Kneen, consultant paediatric neurologists at Alder Hey Children’s Hospital, Liverpool, UK and
  •  Dr Stewart Macleod, consultant paediatric neurologist at Royal Hospital for Sick Children, Glasgow, UK.
    They have kindly prepared the information on this page. It is based on their own research, experience and expertise.

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

  • Updated June 2013
    To be reviewed June 2016

Comments: read the 9 comments or add yours

Comments

My daughter was diagnosed with this syndrome at age of 7.
They prescribed Carbamazepine and it didnt work, she was still having problems when sleeping. untill we found a doctor In Argentina that prescribed her OSPOLOT (Sulthiame) and never again.
Her epilepsy type is benign and partial, and she had only one big seizure. But was too long and really scary, and just like this article says, got pale, feeling sick and wanting to throw up.
Now she's 12 and we can notice on the exams (night studies or Polysomnography) how its dissappearing, we make tests every 6 months.
Hope you find the right doctor and the medication too.
Kind regards and best wishes
Mstar

Submitted by Mstar on

My 4 year old grand-daughter has PS and after the first attack had nothing further for 6 months. She then had another attack and was given tegretol which after a few weeks she refused to take. She was then given another medication which she refused and now takes ospolot tablets as they have no taste. However, she is getting more frequent attacks on the medication than she did without any during the first 6 months. How can this be?

Submitted by Diane Green on

Hi Diane

It is really difficult to say why someone has seizures in the pattern they do. Of course your grand daughter’s seizure activity could be directly related to the epilepsy medicine. But it may be that her seizures would have changed or increased anyway. It may be that this is not the best medicine for her to be on. Hopefully the epilepsy nurse specialist or doctor will be able to provide some answers, and the right medicine is found for her soon.  

Cherry
Advice and Information Team

Submitted by AndyWeb on

Hi just an update, reading comments here I'm quite sure I'm doing the right thing by not giving my son medication. Nothing has happened since august an before the long august seizure we had a 6 months gap. From all the other comments I see that meds arenot helping that much. Maybe just making episodes milder but then more frequent. It's now 1.5 years since it started so I'm hoping that we might have just one or two more ahead of us. Unless something changes and he starts having more seizures ( maybe once a month) I do not want to medicate him. Of course each of our cases is different and I don't recommend that everybody with PS should not have meds but I'd rather have a couple of episodes a year than lots of mild ones and all possible side effects of the drugs.
Babs x

Submitted by Babs on

Hi,
My 6 year old daughter had only one seizure. She has been put on Tegretol. She has had no siezure since then. Her learning capabilities and other stuff that kids do is very normal. Doc has advised her not to swim. She has given up on the same. But she does skate, running, debating and also is excellent in her studies. She is 7 years now.

It seems she is proceeding towards a healthy adult life. I wish all parents would soon have their kids off this one.
Take care all of you.

Submitted by Monika on

My daughter is now 15 and suddenly developed this condition at the age of 4. She has mild CP and learning difficulties also.
It is extremely distressing and I really understand the worry of parents when this seems to happen at night. As my daughter would always vomit, I got an alarm for her pillow which would let me know if she had been sick. Carbamazepine provoked an allergic reaction and we found that epilim really slowed her down and did not stop the seizures. She has lamotrigine which seems to suit her but, I have to say, she is still liable to seizure if her medication is missed or reduced for any reason.
This may be due to the underlying CP..
I am interested to find that this syndrome is now recognised as 11 years ago, we were put in isolation units as the presentation was similar to severe gastroenteritis .....even though I insisted it wasn't !
Also, buccal midazolam administered as early as possible, seems very effective in averting a full on seizure.
I'm glad to see that PS is now a recognised condition. I researched this when my daughter started having seizures and put it forward as a possibility to paediatricians but at the time they hadn't heard of it.
Best of luck everyone. Very frightening and I do know how horrible it is .

Submitted by Sue Paterson on

My just turned 3 son was diagnosed with P.S. at 2 years old but has been having seizures since he was 4 months old , he has also had over 40 episodes(as we call them) in this time so kind of bucks the trend with this syndrome both in age and frequency of attacks.
He always complains of violent headaches and nearly always projectile vomits when having a seizure. We administer buccal midazolam which stops the seizure very quickly but wipes him out when the drug takes effect.
I'm mainly posting this to let people know that this syndrome can effect children outside the 3-15 year old age range ussually quoted.

Submitted by Carl on

hi there my son at 3.5 yrs had a long seizures lastin longer then 30mins and it only stopped when paramedics gave him meds, b4 the seizures he woke and spewed and then went quiet and then started we was in hospital for 2 days for monitoring as we live 1.5hrs away from the hospital he then had a EEG which showed epileptic activity the lady doing the EEG could see this easily the results were sent to a pediatric nurologist and he came back with this panayiotopoulos syndrom they wanted an mri done just in case and that came back clear we then seen a regular pediatrician by this my son was about to start school and in his enrolment there was the question so i told them and they wanted the pedi to do up a action plan type thing just in case but he refused and said he doesnt have epilepy because he has only had 1 seizures so he is too old school to condisder thy syndrome now my son is 5.5yrs and has started waking up and spewing and is a bit vagiue he has also started wetting the bed and his teacher has said he has been abit vagiue at school too do u thinkin this maybe related? is it possible he is having smaller seizures and then spewing ?

Submitted by karlisle on

Hi

If you have one diagnosis from a paediatric neurologist and a different one from a general paediatrician, it would seem reasonable to pay more attention to the doctor who has more experience in the field, that is the paediatric neurologist. I wonder if the two doctors could be in touch with each other, then the regular paediatrician could maybe feel more reassured about the diagnosis.

It may be worth talking to your family doctor or the epilepsy nurse, if your son has one. They could possibly help with lines of communication between the two paediatricians. And also find a way for you to get the answers to your questions about what is happening for your son now. I’m afraid we aren’t in a position to be able to answer your questions as we’re not medically trained.

I do hope the situation becomes clearer and more straightforward for you and your son very soon.

Cherry

Advice and Information Team

Submitted by Cherry on

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