possible epilepsy

[tobi21]

Our DS is almost 18 months, over the past 2 months or so he has had around 4 episodes of trembling/shaking all over, with the worst being last night that lasted 5 minutes with him clearly distressed looking scared/confused and crying.
The first few times we weren't overly concerned as he was fine during and after but last night was scary to watch and left us both shook up. As he was fine we didn't seek any urgent care. He has already seen a GP and has a paediatric epilepsy appointment at a hospital next week. I guess the point of this post is to ask if anyone out there has been through something similar with their DC and can share their outcomes/experiences? To help calm my over active worrying mind.

bumping

My DS1 had epilepsy from infancy. We found it really difficult for it to be taken seriously. Video his seizures and keep a diary of them. Btw, he was on meds from age 4-12 and then we weaned him off them as he hadn’t had a seizure for years. He’s now 17 and doing his A levels.
Btw, I’d keep your child in the same room as you and use a video baby monitor to check for nocturnal seizures. Also get him a seizure pillow when he needs a pillow. Hugs to you. It’s so stressful but, look, my son has had a good outcome. Apparently if they go two years seizure free on meds then there’s a fifty percent chance of the brain rewiring itself and the child becoming seizure free.

@Mistlewoeandwhine thanks for your response, if you don't mind me asking how did his seizures present? We aren't even sure if what's happening is a seizure because it doesn't present like anything I've seen or would imagine it to be, he's fully conscious and apart from being upset seems okay? We will get more answers at his appointment hopefully

Seizures can come in loads of different ways. That’s why my son didn’t get medicated until he was nearly five - because no one actually thought he was having seizures apart from me and my husband. My son’s were nearly all at night but then he had a daytime one and the paediatric dr finally told us it was epilepsy.

It sounds like your son might be having partial seizures.

DS was diagnosed aged 18months with myoclonic epilepsy.

If you have ever jerked when you've been falling asleep that's basically what he was experiencing but it happened when he was awake too. He had an awake eeg and a sleeping one which showed he was fitting up to 300 times a night, each fit only lasting a few seconds.

He had 3 years with permanent bruising on his forehead as when he had fit he would basically head butt whatever was in front of him. The waiting list for a helmet was over 2 years on the nhs so we bought a rugby skull cap which he wore from he got up in the morning til he went to bed.

We were lucky in that the first medication they tried worked (sodium valproate) and he was medicated until he was 9. Sodium valproate works on a active ingredient to body weight ratio so we got to the stage as he grew that the ratio had dropped below effective levels without any breakthrough seizures so his consultant decided to wean him off the meds when he was 9

He's now 15 and sitting his GCSEs this year and has been fit free since he was 7.

He only ever had one grand mal seizure but we did notice several absences along side the myoclonic jerks.

It's scary facing something like this and I wish you the very best of luck getting to the bottom of it x

I was fully conscious during my seizures all my life, nobody thought anything was wrong apart from me, I understood whatever that scary 30-60 seconds was, it wasn’t normal. I think I’d just look a bit blank to those around me, my mother wasn’t as vigilant as you. Eventually I started having generalised seizures, so you could see I had epilepsy, but I’d had partial seizures and absences for many years before diagnosis.
think it’s great how many mums got a diagnosis for their child so early in life, if my mum was as vigilant as you guys I might not of ever had a generalised seizure xxx