Daughter recently Diagnosed - Could she outgrow it?

Posted by melissa1234 @melissa1234, Aug 8, 2025

Hi team, my daughter had her first Tonic Clonic age 13 when she had a bad case of Influenza A. EEG showed Generalized Discharges. They ruled it Generalized Seizure Disorder. I chose not to medicate as there was a theory this could have been provoked (febrile seizures can happen to those over 6 yrs of age, just not common). I spent the next 2 years watching her like a hawk for other symptoms. At the 2 year mark with no other symptoms her Neuro though she could rule provoked but Children's changed their mind. Kept Epilepsy rating. Fast forward to almost 3 years with zero other symptoms and she experienced another seizure (unmedicated). Unfortunately she ended up on her curling iron and sustained 2nd and 3rd degree burns + epilepsy re-diagnosis. Given the PTSD/Pain/Recover and Fear at now almost 16, her mood has been all over the place. I have panicked thinking she is having Focal Awareness Seizures but doc is thinking it is more PTSD saying if General disorder not likely Focal. She doesn't have Myclonic or Absence seizures, however her first one (which I was there for), started with Absence. This second one I am not sure. Given only these data points (2 tonic clonic seizures in ~3 years) plus her age, 13 and almost 16, plus her type of epilepsy. Does she have a chance to grow out of this? In the 3 year period she got her period (no issue), had emergency Appendectomy - hospitalized due to partial tear and pain, become a competitive dancer (lots of body and mind stress) and etc, with no hiccups...but her neuro said this could be the start of it getting worse. Worse time is this decade for her (given it opens up the doors to staying up late, alcohol, stress, college, etc), however research says there is a chance for early onset epilepsy to resolve especially if it happens pre-puberty? Any advice would be great.

She is set to start Lamotrigine ER (Praying we don't have a rash); but we have been hesitant as we are setup to do skin graft surgery next Friday.

Also - would Mayo or any other Level 4 clinic ever see us? Given we are not critical enough? I wanted more diagnostic tests. We have 1 MRI from 3 years ago and 1 EEG (basic). What addition testing should I ask my neuro to do?

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FYI - Her MRI came back with a slightly smaller hippocampus on left than right. Very small difference so tech noted to be normal as most people have this, however this slight variation can be seen in people with PTSD. She is and has for a while had an overactive flight or fight response. Very jumpy. I need to get her into the right 15 year old appropriate therapy but she is afraid of it as the thought of processing trauma makes her anxious.

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@melissa1234
Good Morning Melissa!
I'm happy to know that Mayo Clinic has already contacted you.
Thanks for sharing that additional information. Here are some thoughts based on what you've mentioned recently:
- PNES
My understanding is that an experienced and caring doctor will treat both epileptic seizures and PNES. Since you haven't yet discussed PNES with your daughter's doctor, I'd encourage you to bring this up and ask about possible treatment approaches. Both conditions are real and treatable.
- Catamenial Epilepsy
When I was on Vimpat, my catamenial epilepsy hadn't yet been diagnosed. The 100 mg twice daily dosage I took in 2019-2020 helped increase my seizure threshold and seemed to provide some protection from my hormone-related seizures. I hope this dosage will also help protect your daughter from those seizures while her doctor addresses a specific treatment with a gynecologist.
- Epilepsy Centers
I see that @tchandos has already provided you with valuable information about these centers. If you'd like to learn more about specialized epilepsy centers and what they offer, here's a helpful resource:
Epilepsy Centers - Epilepsy Foundation
https://www.epilepsy.com/treatment/epilepsy-centers
- MRI Results
The results from your daughter's most recent MRI seem to have provided valuable insights into her epilepsy type. A smaller hippocampus in epilepsy is typically associated with mesial temporal lobe epilepsy. I also have a slightly smaller left hippocampus, which is the cause of my epilepsy. Interestingly, my initial MRIs showed normal results until a more detailed scan was recommended, which revealed a small shrinkage in my left hippocampus. Here's more information about this type of epilepsy.
Temporal Lobe Epilepsy (TLE)
https://www.epilepsy.com/what-is-epilepsy/syndromes/temporal-lobe-epilepsy
I know how overwhelming all these revelations can feel at first – the anxiety and uncertainty are completely understandable. With proper diagnosis and treatment—especially early diagnosis like your daughter is receiving—many people with epilepsy live full, active lives. Take things one step at a time, and remember that having answers is actually a positive step forward, even when it feels frightening initially.
Please feel free to reach out with any questions or concerns, and keep me updated on how things are going.
Chris

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