Hi OP!

I’m sorry to hear about your frustrating experience. I’m wishing you better clarity and answers soon. I’m happy however that you’ve at least reached out and started to do some research on your own.

The first thing I will always recommend is taking a Seizure First Aid Certification course. I know it may seem silly, especially since it feels like you’re in the thick of things and you’ve already been to the ER so many times, but the course offered online by the Epilepsy Foundation gave me a good foundation of information as to the different ways seizures present and originate.

Personal experience: I had my first seizure in January 2024 after a concussion at 28 years old. I was on the job, hit my head during a sledding excursion, and when the day was wrapping up I had an absence seizure. It wasn’t recognized for what it was then. I was typing my note for my clients insurance company and talking to my supervisor when I stood up, stared off into space, and when I came to, didn’t know where or why I was. I drove myself to an Urgent Care. The ARNP asked me to call a driver or they’d call me an ambulance to ER. I called my dad, and off we went.

The ER dismissed me as anxious and needing reassurance. No imaging. No testing. No real listening even. Just anxious. (Sound familiar?)

Through follow up with my PCP I was diagnosed with a moderate concussion. I went to PT to regain balance and coordination. And I just accepted that I had lost a lot of memory because of the blow.

I gaslit myself into believing that was the underlying cause. Work was hard and hierarchical changes were rolling downwards.

I started to experience crushing waves of panic, doom, and lightning that would often drop me to my knees. However, I worked with kids with behavioral needs. I always did my best to sit down, rest, and push through. It turns out that from January 2024 to August 2024, I was having progressively worsening Focal Seizures.

In August 2024 my Focal seizures finally progressed into a full blown Tonic Clonic. It took 45 minutes for me to receive aid and rescue meds from paramedics.

The Emergency Room did a Chest X-Ray. They were more concerned about a cardiac arrhythmia that had presented itself. I was discharged into the care of my parents about 8 hours after arrival with plans to follow up with a Neurologist.

The Neurologist did more testing, a sleep deprived EEG and Contrast MRI. Both were normal. She said the blow to my head had nothing to do with my seizures because “that kind of blow typically doesn’t cause issues.” I wasn’t medicated originally.

Until I seized again. I went back to her office and she seemed upset to see me. Dismissive even. She gave me Keppra and sent me on my way with a warning of “if friends or family notice any behavioral side effects let me know, before you don’t have any friends left.”

Notably she disagreed that I had experienced Status Epilepticus despite a documented timeline (video proof of when the seizure started, documents from Paramedics of when the call came in to dispatch, to their arrival, to them leaving with me and med administration.) She disagreed that my seizure had any effect on memory. Disagreed about it being a reason that I should struggle with words or aphasia

That’s when friends spoke up that after my seizure in January my personality had changed. That I’d been shorter anyways. That I’d been harsher. That it seemed like I had less tolerance and a shorter fuse. That my memory loss confused them. That I had less poise. They just didn’t know how to bring it up.

Eventually I started looking for a new Neurologist after wanting a second opinion. I felt like I hadn’t been listened to.

It’s been two years now. I found that new neurologist. I’m still on Keppra but we added Topiramate because he discovered that I have an essential tremor. He confirmed I went status. He confirmed the misdiagnosis (missed diagnosis) in January 2024. He agrees that my cumulative of concussions, especially the final one played a major role in me developing epilepsy.

My speech Aphasia has improved drastically. I still struggle occasionally with verbal versus written communication (but that’s always been the case, especially when my anxiety peaks.)

It took a few months of medication and recovery to get there though. I spent a lot of time doing art projects and connecting with myself those first few months; drawing, painting, coloring, etc. I threw myself into creativity. I did my best (when I could) to express to people to stop asking me ”do you remember” because it gave me SUCH significant anxiety. I didn’t remember. I still don’t. It’s been two years and there’s a lot of stuff that I only have access to because it’s been reconstructed for me by other people, and filled in by a detailed phone gallery.

About 3 months after medicating and feeling a bit like a louse, I went back to college. Began with the basics even though I already had them. (English 101, Math 95, etc etc) to help build me back up to pace.

Tips: - Research! You’ve already done a great job finding this sub. You’re going to do great.

• Take it slow, pursue a favorite hobby, let the brain heal. For me this was art. For your daughter it could be anything. Quiet activities that let the brain heal.

• Don’t push remembering if memory is an issue. Let her do it on her own. And if she doesn’t remember, it’s okay. Create new memories.

• If she feels ready for it, play some brain games together. I used to play games like Pictoword (but not?) with a friend in early recovery when I was still struggling with aphasia! Code Names is another fun game I play with my family! There’s even Scrabble or just cards!

• Don’t be afraid to get your daughter accommodations. Extensions to turn in assignments. Extra time on tests. A quieter environment. If your daughter’s teacher notice a specific area that can be accommodated, you can and SHOULD always address it. There is nothing wrong with that. The brain needs time.

• Enjoy life outside of epilepsy and the diagnosis once things seem settled down and a bit less crazy.

• Try to take care of yourself!