Panayiotopoulos Syndrome
What is Panayiotopoulos syndrome?
Panayiotopoulos syndrome (PS) starts in early childhood, usually between the ages of 3-6 years, but children from 1-13 years have been described. Both boys and girls can develop PS. It occurs in approximately 3 out of 50 (6%) children between the ages of 1-15 who have epilepsy. Children with PS mostly have normal physical and cognitive development.
This syndrome is also known as early onset childhood occipital epilepsy.
A minority of people (about 17%) have a family history of seizures or epilepsy. No specific genes have been definitively associated with PS.
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Contact Our HelplineWhat type of seizures are seen?
Seizures in Panayiotopoulos syndrome usually start as focal seizures that evolve to a generalized seizure. Seizures happen at any time during the day. Most often they happen during sleep or shortly after falling asleep. During a seizure, they may:
- Look pale, complain of feeling sick and may vomit
- Faint and pupils may dilate or get large
- Keep interacting with the people around them
- Eyes may turn to one side and tonic-clonic movements may occur
- Be unable to see (lose vision temporarily), see flashing colorful or bright lights, or have blurry vision
Seizures tend to be prolonged, lasting 1 to 30 minutes. Longer seizures (lasting up to 2 hours) occur in 21-50% of children with PS. The longer the seizures last, the more likely they will progress to generalized tonic-clonic movements.
The seizure symptoms of PS are frequently mistaken as non-epileptic conditions, such as fainting, migraine, cyclic vomiting syndrome, motion sickness, sleep disorder, or stomach flu.
How is Panayiotopoulos Syndrome diagnosed?
PS is diagnosed based on description of the seizures. The majority of children with PS have spike discharges on their EEG in many areas. These abnormalities seem on the EEG are mostly found in the occipital area of the brain.
- These spike discharges can shift slightly from one EEG to another. Spikes will often be more frequent when children close their eyes or are not fixating on an object, a phenomenon known as “fixation-off sensitivity.”
- Background activity is normal.
- An EEG with some sleep is important to obtain if possible.
- Below are examples of EEGs of a child with PS
Download forms that help when describing seizures.
How is Panayiotopoulos syndrome treated?
Medication
Seizures in children with PS are often infrequent and antiseizure medication may not be needed.
When seizures are more frequent, the seizures can be controlled with antiseizure medications like oxcarbazepine (Trileptal), carbamazepine (Tegretol or Carbatrol), levetiracetam (Keppra), gabapentin (Neurontin), zonisamide (Zonegran), lacosamide (Vimpat), and others.
Other Treatments
Because children with PS often have long seizures, they may need emergency medical treatment. A rescue therapy may be helpful, such as diazepam rectal gel or another form of benzodiazepine given in the nose, under the tongue, or between the cheek and gum.
Parents of children with PS should talk to the treating neurologist or healthcare provider to learn about seizure emergencies. Talk to the care team about what kind of rescue therapy could be used and when to use it.
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Find Your Local Epilepsy FoundationWhat is the outlook?
Generally the outlook for children with this syndrome is good.
- Many children have few seizures during the course of the disease. Up to half of children have fewer than 4 seizures total.
- Children with PS will typically have normal physical and cognitive development despite the prolonged seizures.
- Nearly all children will stop having seizures 2-3 years after the first seizure.
- The risk of epilepsy in adult life is not higher than in the general population.
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