6-Year-Old Possibly Has Panayiotopoulos Syndrome – Neurologist Suggested Keppra, Unsure Whether to Start

Hi everyone,

I’m looking for advice and shared experiences from parents or clinicians. I have a 6-year-old son who recently had a nighttime seizure, and we’ve been told it might be Panayiotopoulos syndrome (PS). We’re unsure whether to start him on Keppra (levetiracetam) and would really appreciate your input.

What happened:
Late last year, my son vomited at night and then developed an episode of eye deviation to the right. It lasted around 10 minutes and looked like an active seizure. We rushed him to the ER, where he received lorazepam, and the seizure stopped. CT and MRI scans were clear.

He then had a 1-hour EEG, which came back as:

“Normal awake EEG with bilateral posterior head region irritative foci.”

Based on this, the neurologist recommended Keppra syrup 100mg/ml – 2 ml twice a day.

Important background:
Over the past two years, my son has had around five similar nighttime vomiting events, often after eating food like sausage or pizza. In most cases, the vomit was partly undigested. Only two episodes involved seizures or abnormal eye movements. In all events, he had no memory the next morning of vomiting or what happened afterward.

Some doctors suggested this pattern fits Panayiotopoulos syndrome, which I now understand is a benign epilepsy syndrome in young children, often involving vomiting, autonomic symptoms, and nighttime focal seizures.

However, others say that since seizures were limited and infrequent, starting anti-seizure medication may not be necessary. On the other hand, we were told that once Keppra is started, it has to be continued for at least 2 years.

We’re now planning an overnight EEG to get more clarity.

What I’m hoping to learn from you:

Has anyone had a child diagnosed with Panayiotopoulos syndrome?

Did you start medication or choose to wait it out?

If you used Keppra, did your child experience any side effects (especially emotional or behavioral)?

Is it risky to delay medication if future seizures are possible but rare?

Did your child also have no recollection of nighttime seizures?

Any thoughts from parents or professionals would really help us feel more confident in deciding what’s best for our child. Thank you so much for your time.

Note: I used ChatGPT to help organize and write this post clearly based on our experience.