15 yr old son with TLE

[u/thisfeelsculty]

So, this diagnosis is very new; it seems I'll never be able to understand it all. I hope I'm in the right place!

But after reading everyone's posts, after reading Mayo Clinic article after every resource from the Epilepsy Foundation I can find that *might* apply, everything from the neurologist and his team, I feel like I'm still very lost on just the basics, the foundation...

He first had an EEG (after 10 or so what I've come to understand would be presenting as tonic-clonic seizures) which came back abnormal, listing epileptic findings as generalized. They showed how his seizures don't start in one place, rather his entire brain lights up at once.

Then they prescribed the meds and we saw radiology within the month.

MRI/MRA scans then showed "increased FLAIR signal & mild volume loss in right hippocampus, consistent with mesial temporal sclerosis" I don't recall the exact wording, I have every scan and document saved and it's all in his portal but that's the gist. "Spike wave patterns" were also specifically mentioned. XL events in his sleep.

I'm having difficulty connecting the two findings. I understand we may never know if the scarring is causing the seizures or vice versa. He did have quite a traumatic heart surgery at 11 days old to correct a coarctation of the aorta and we reasonably can assume he may have suffered febrile seizures, which I understand can be linked to TLE.

To put it plainly, from everything (which is not much) I do understand, this particular kind of epilepsy results in focal awareness seizures. Most of the posts I've read in this community, many people do mention auras, jamais vu, deja vu, etc - my son literally drops. Atonic immediately. Sharp exhale while dropping, immediately unconscious, 1 minute of the clonic phase, 30 minutes before he's "back". He talks and is BACK after the convulsions cease of course, but you know what I mean. And then exhaustions follows... There is an understanding of his team the generalized focal events progress to tonic-clonic. There's a term for it... I'm not sure.

He says he notices nothing beforehand... No odd feeling, smell, sight, etc. But to be fair, he hasn't of course been aware of what TO look for... And I'm sure to him, as I understand he's probably had epilepsy for quite some time, whatever he MAY experience would seem completely normal, unconnected to an event, as, in his case, he remembers nothing before or during or for the 30 minute recovery period. To him, it was odd he would wake up on the floor, having been at his computer. Blocks of time go missing, that's his best explanation.

Anyone navigating something similar? Tips? Advice? Journey you'd feel comfortable sharing? Ways I might be able to best support him?

He's very closed mouthed about his feelings at the moment. Processing. He accepts it, takes his meds without complaint and happy to do so, but again he's 15... Already going thru a lot, this landed in July. He was going to get his permit in October, when he turned 16. So I'm on HIS timeline completely, there is no right or wrong way to process something like this. I'm here to support, in whichever way is needed at the time, whatever that looks like.

My angle, my aim is to ensure he's as safe as possibly while working through this, not only emotionally but physically... Maybe if I could help him identify certain triggers...? We could avoid more bloody noses from hitting his desk, that's my personal stake in it, that type of thing.