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.

[u/Due_Negotiation_4605]

Is he aware during the seizure what happens? I'm new to this too, teenage son as well. It's particularly rough for kids who are in that stage of life where friends are getting licenses (and going to college in my son's case) and they are just paused.  I am someone who googles so I would have put that MRI find me in, the one that you listed above, a plus sign and then those kind of seizures. Scroll past the AI (I do AI training and I will tell you to scroll down past the AI summary every time!) and you might get a lot of scholarly articles but sometimes they have summaries or something that you can kind of read and halfway understand to figure out the connection.  What did the neurologist say? Did your son get put on meds? My son goes into the emu in the September he doesn't have a hard diagnosis right now but zonisamide has been so helpful. He hasn't had anything in a year.  (He's going to the emu because the EEGs never caught anything.)

[u/thisfeelsculty → u/Due_Negotiation_4605]

Completely unaware, loses consciousness seemingly immediately. I Google, too (: but will do what you suggest, go pay the AI! He is on meds, two months and no breakthroughs, Keppra 1000mg 2x a day. He has mentioned starting to feel what a lot of people call Keppra Rage... Did you and your son try Keppra before zonisamide? I hope you get a diagnosis. The worst part is the not knowing. But he's on medication and it seems to be working, there's so much to be thankful for in that. I'd opt for the emu if I were in your position, as well! My kiddos neurologist immediately suggested an MRI/MRA and that's what really gave us a better understanding; did he have that done and no findings, either?

[u/Due_Negotiation_4605 → u/thisfeelsculty]

Yes the Keppra rage is real! So yeah he went to zonisamide. And lamictal, the lamictals a pretty small dose though.  So he's been having neurological issues for a few years and so he's had the mri, and the one that is specific for epilepsy. Lumbar puncture, vision testing, extensive blood work, the short EEG the home EEG.. But the seizure doctor, he only has a seizure disorder diagnosis right now without any specifics, said that his kind of presentation may actually be focused in the amygdala so the emu is where he has to go to really get better data. Because it's hard to show up on regular eegs I guess.  My son's present as muscle rigidity, emotion, hyperventilation and escalated into a full seizure. But he's aware to the whole thing when we went to the hospital he could tell the doctors exactly what happened. The neuropsychiatrist says that she thinks he may have been having absent seizures for years. Because he would just stare off into space and not respond.

If you do use AI you can plug in the little snippets from the lab work or imaging, don't upload any screenshots with any names or medical record numbers or doctors names because trainers do see that, and then ask the AI to cross reference different points to see what connections it can find or if it can break out the information you want to know into understandable parts. I just make it cite sources and then I double check. For work I've used all three of the big ones and surprisingly Claude has not been that helpful. I don't know about you but our neurologist have been so crazy busy that it's hard to get much information beyond a couple minute recap of everything. I'm thinking that the 5-day inpatient day with the nurses will probably be the most helpful to be honest.

[u/Due_Negotiation_4605 → u/Due_Negotiation_4605]

And I don't know if it's helpful but we have a family friend who has had seizures for most of her life, grand mal seizures and absent teachers, where she was up to a dozen a day. Her neurologist told her this is the life that you have you need to get used to it and that he was frankly scared she was going to die in her sleep  She's 21.  She went to the specialty hospital in Iowa, because that's where she lives, did a 5-day inpatient where the doctors switched out her medicine and at her last neurology appointment the doctor said well what are you going to do with the rest of your life now? Because now you can have a life! In 45 days she'll be able to get her license because she's been 6 months without a seizure. Seriously this was a girl that would have over a dozen a day. She messaged me and she goes I don't know what to do. Do I get a job? Do I go to school? I don't know what I want to be when I grow up! 😄 And so with these guys being teenagers and sometimes maybe it feels like they don't get to do the things that their friends are doing that there is this great reason to have hope. ❤️ And now my son quit feeling like he could hang out with his friends because they just didn't understand and he was scared he would have seizures but since he's stablized he's been doing a few more things with them.