Nocturnal Epilepsy

[letsgetamoveon]

Hi

So have just spent the day in A&E with my son.

3 years ago my then 10 year had a seizure in the night, visually trembling, eyes rolling, foaming mouth and he bit all inside his mouth.

At the time the doctors put it down as a febrile convulsion even though no temp or infection to cause this. I thought maybe Covid had something to play in it but no positive test.

He has been absolutely fine since then until last night when he had another seizure during his sleep, same thing again, visually tending and trembling, eyes rolling etc with confusion when he came out of it.

We have spend the day in hospital having numerous tests ecg's blood tests etc an nothing has been found. We are being referred to the epilepsy clinic for EEG for possible nocturnal epilepsy.

Has anyone got any experience of these. He is completely fine both before and after these episodes.

I have read this evening that nocturnal seizures can lead to more frequent episodes.

Just looking for any advice really from anyone who has experienced this.
Thanks

Your situation has probably changed since this post... but yes, I have experience of this. My daughter started having nocturnal seizures a couple of years ago, when she was nearly 9. The first seizures were quite long (about 5 minutes of convulsions), occurring at intervals of about 2 weeks. The paramedics recommended filming the seizures to help doctors diagnose - it seems counterintuitive to film when your child is so vulnerable but it did really help to have the video footage. An EEG confirmed a diagnosis of Generalised Epilepsy Disorder - so the diagnostic process was all quite straightforward though I do remember having to chase things to see the specialists ASAP. Medication has worked really well to control my daughter's seizures - in the past 18 months I've only seen one seizure, when her medication dose needed increasing. Of course with nocturnal epilepsy, the difficulty is knowing whether you've missed one. I look out for a wet bed (because bladder control stops during a seizure), a morning headache or unusual fatigue. We got free anti-suffocation pillow from HOPE (https://www.hopeforepilepsylondon.org.uk/) who help families whose children suffer from nocturnal epilepsy.