6-Year-Old Possibly Has Panayiotopoulos Syndrome – Neurologist Suggested Keppra, Unsure On Staarting

epilepsy_disorder_qa

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.

SaraC_Scope

Morning @epilepsy_disorder_qa

Welcome to the community. It sounds like you are coping with so much and it's normal to have lots of questions. It's great you've written them all down. You can keep track of answers you receive and refer back to things when needed.

I have epilepsy and understand how frightening it can be for family to witness seizures. You are doing the right thing to explore how best to support your son and speaking to others, can be reassuring.

I would recommend contacting Epilepsy Action's helpline. They have a wealth of knowledge and can support you through this process. I've included the link to their website where they discuss this type of seizure and the helpline number is listed at the bottom of the page.

Self-Limited Epilepsy with Autonomic Seizures

Best wishes