27 year old son first seizure March 2025, still having small seizures

Do I have your permission to copy and send to my neurologist? Professional ethics will not allow him to give specifics, but I think he'll provide a few interim recommendations (testing, etc.). I'll share with him my participation in our support group. I have compassion for your family. From personal experience, my reduction in seizures was getting more sleep. It is a major trigger for seizures

@royanthony yes please. He was diagnosed with nocturnal seizures so the thing he needs the most is what is hurting him. The neurologist responded about an hour ago and suggested taking Xcopri which has horrific side effects like a life-threatening rash!! Considering he already has rashes, probably NOT a good idea, also leads to heart issues where you could just drop dead... How is this a good med for him. He has a wife and 2-year-old son, this news just terrified us all.

So sorry this is happening to your son. My experience with epilepsy is not helpful as it is much lower level and correctable with surgery (which I've had). My first thought about Xcopri was the same as yours (what a crazy drug side effect list). My second thought was drug companies seem to list crazy side effects on every commercial for drugs I've ever seen. So I wonder how much the real risk is.
@royanthony seems to have a possible great connection for information. Make sure he has the new drug info as well. So you can get a better opinion on the drug's real risk.
Sorry I can't help. But I will commit to praying for your son and your family.
BTW I know how much of a trigger lack of sleep is for epilepsy. Prior to my surgery they needed for me to have a monitored seizure but days past and it wasn't happening. Doctor walked in and said "no sleeping tonight" and I had the seizures, they wanted to see, that night.

@hattenburg5, I can imagine how frightened you, your son and the whole family are about these unwanted side effects.

Was he able to see his own neurologist? How is he doing?

I'm sorry to hear of your troubles and that it's taken me so long to respond. Seizure medications are almost always psychotropic drugs, and they will affect moods and emotions. There isn't a lot that can be done to prevent it. Some drugs are worse than others. My neurologist first told me they would search to find a drug cocktail that would stop my seizures but that I could live with the side effects. That's the stage you're in right now.
Make sure the side effects can be lived with and if they cannot, look for another drug cocktail. I would suggest that you find him someone to talk to that understands epilepsy.
Believe me his lack of control is as frustrating for him as it is for you.

Hi @hattenburg5
I see you have joined our community on my first day of holiday. Be very welcome to it!
Every antiseizure medication comes with a long list of potential side effects, but that certainly doesn't mean your son will experience all — or even any — of them. When my current doctor recommended Keppra, I was honestly quite scared by everything I'd read about Keppra rage. But he reminded me that we're each unique, and what affects one person may not affect another, even among people with the same epilepsy diagnosis. And thankfully, in my case, that particular side effect never showed up!
How is your son doing? Did he end up starting XCopri alongside the Lamictal (lamotrigine)? I hope things have been going more smoothly for him 🙏
Chris