3yo seizure without a fever

[onthenightfeed]

DS had a seizure this week for the first time, and in hospital they only seemed to check for infections (UTI, chest/respiritory infections etc). He didnt have a fever at the time so it can’t have been a common febrile seizure, even though they seemed to keep offering that as one option. When they discharged us they basically said he’s out of the woods for sepsis and they can’t find any source for his elevated infection markers and from monitoring him for over 24hours he’s “clearly a well child” (he’s an extremely energetic & bubbly 3yo who was bouncing around the hospital like a Duracell bunny). At the time I was obviously feeling totally stressed and anxious and just trusting the doctors on top of trying to keep my DS entertained with very little to entertain him with!!

Now that we’re home and the dust has settled I’m feeling stressed about leaving with no answers? Just because he’s back to his notmal self now he’s clearly not “well” if he’s just had a seizure for no apparent reason!! Am I being crazy for thinking they should have done some head CT/MRI to rule out head injury/tumor/stroke etc??? They seemed to just send us on our way saying if it happens again then they’ll do further investigations.

But I’m now in floods of maternal panic (I’m also 6m postpartum with 2nd baby so admittedly hormones are raging and massively sleep deprived) that it will happen again in a year or 2 and it will be something really serious and they’ll say oh no if only we knew about it a year ago we could have done something about it but now it’s too late. 😩

I guess I just want to know, am I being paranoid? Has anyone else been in a similar situation?

I would seek advice from the GP. I had seizures - first one 3 hours old, second one 10 years, 3rd one 11 years, 4th one 12 years. Now 43, haven't had one in 31 years. Now I have cerebral palsy from birth due to mum having undiagnosed placenta previa and me having oxygen deprivation. They linked the seizures to that but not very specifically. The thing is I think that children actually can have them when they are "well". Most of the sinister things that would cause them are epilepsy which would require an EEG which is a hard procedure for a 3 year old, or a brain abnormality, probably a tumour. A tumour is VERY VERY unlikely and is even less likely to cause ONE seizure and no other symptoms. Epilepsy is likely to cause more seizures soon. So while it could be the start of something horrid, the chances are, if it is one seizure it is likely to be nothing to worry about, if it becomes more, you'll know that soon and they will often more investigation. I'm truly sorry you are going through this, but I would be weary of submitting a 3 year old to a EEG or cat scan for one seizure.

I know it is very scary to witness your child having a seizure. To reassure you some children never have another seizure after the first one, it doesn't mean your DS has epilepsy or anything medically wrong with him at all. The chance of it being anything more serious is very rare. If your child does have a second seizure then they will be referred to a paediatric epilepsy specialist and have further tests.

The best thing you can do is familiarise yourself with the advice on what to do if your DS does have another seizure so that you know what to do if it happens again. If your DS does seem unwell in himself or develops other worrying symptoms then get him checked over again, although it sounds like he is back to his usual self from your description of him which is reassuring.

https://www.rcpch.ac.uk/sites/default/files/2020-07/following_a_first_seizure_without_fever_in_cyp_parent_a4_2019_v1.2.pdf

Did anything obvious trigger the seizure other than fever? Look up reflex anoxic seizures. My ds had those starting at 18 months old, took a while to work out the triggers.

I think you're right to want to get to the bottom of it. Not the same situation as he never had a seizure but my son had strange tremors when he was 1 and then a headshake... eventually diagnosed with a brain tumour. He had an EEG (which revealed nothing) and later an MRI. I'm glossing over this... we had to see 4 different neurologists before he was diagnosed. But if you were my friend in real life I would be saying not to just leave it here.

Do you have health insurance? Get a referral to a paediatric neurologist.
What also may be helpful is seeing an ophthalmologist.

Here's some information from the Brain Tumour Charity also

Baby signs and symptoms - Better safe than tumour

Unfortunately it happened at a play centre with his childminder so I didn’t see exactly what happened 😔 From what they said, he seemed to just be running around playing as normal and then crawled into the little reading tent for a story but put his head down on the floor and then his arm started shaking and he was unresponsive for about 5mins 😣 Thanks for that though very interesting!

@BlackSwanThis is exactly my fear and reading through those symptoms to look out for, it’s so hard to know whether things are symptoms or just him! He is super clumsy, has he always been and that’s just him or is it a symptom? He has seemed a little more tired sometimes recently but there’s also a lot going on with a new little brother in the house.

I don’t have insurance unfortunately but I think I will definitely follow it up as I don’t think I could forgive myself if it did turn out to be something more sinister and I’d just written off these feelings as paranoid mum worries.

Thank you!! I hope your son is ok xx

@Choconuttolatathanks for that link, that’s far more information than we were sent away with! She literally just gave us the discharge papers and told us to video it if it happens again!

Good to know about them just in case that's what it turns out to be because it took for 3 seizures in my son before the hospital worked out what it was, I'd never heard of them before.

Over heating can cause seizures, at a play centre, running around, perhaps wearing a jumper because it was cold outside.

My dsd has severe epilepsy and my dd occasional seizures so I’m well versed in causes and overheating is a major issue for both of them.

And yes to video, it’s so useful to medical professionals, it took 14 years to get a diagnosis for dd but this was pre smart phones and they were only occasional (diagnosis was just it’s one of those things!) whereas dsd got a diagnosis in 3 months but she was seizing multiple times a day quite different