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27 year old son first seizure March 2025, still having small seizures
Hello,
My son at 26 had a seizure, precursors of deteriorating health were lack of sleep. The big event led to him on a ventilator for 2 days under observation in the ICU. Before the event he had odd symptoms like run a fever every 6-8 weeks, throw up, rash, exhausted, fatigue, brain fog. Since the event he has been stable up until Jan 2026, he started to present sleep issues and mild seizures while on the same med, Lamotrigine. After adding a 2nd med at 7 days in, he had a rash it went away in 15 minutes but also started having small seizures for the past 4 nights. His neurologist is out sick, so we have no guidance. 4 days ago, we went to the ER just to get him checked out after the rash to make sure he wasn't developing an allergy. They said it would have presented sooner so to keep taking it until you speak to his neurologist. It is Friday, so the weekend is coming and we still have no guidance, are very frustrated and scared. My son is having emotion swings which is opposite of his laid-back nature, angry to crying in frustration. We need help and do not know where to turn. Why are the seizures appearing again? Thank you to anyone who can help.
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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
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4 Reactions@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.
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4 ReactionsSo 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.
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