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Daughter recently Diagnosed - Could she outgrow it?
Epilepsy & Seizures | Last Active: Aug 31, 2025 | Replies (21)Comment receiving replies
Welcome to our group!
I'm so sorry to hear about the difficult journey you and your daughter have been through, especially the traumatic burn injury from her last seizure.
I noticed you mentioned her seizures began around age 13, when hormonal changes typically start. This resonates with my own experience. I also developed seizures around the same age, which led to learning about catamenial epilepsy (hormone-related seizures). Here are some helpful resources from the Epilepsy Foundation:
Basics about Catamenial Epilepsy
https://www.epilepsy.com/stories/basics-about-catamenial-epilepsy
What is Catamenial Epilepsy?
https://www.epilepsy.com/stories/what-catamenial-epilepsy
Menstruation as a Seizure Trigger
https://www.epilepsy.com/what-is-epilepsy/seizure-triggers/menstruation
Based on my personal experience, Lamotrigine was my first medication and controlled my seizures very effectively with minimal side effects. I did experience a skin rash during the first month, but it resolved completely. The "Lamotrigine rash" is indeed a common side effect not only of Lamotrigine, but also of other AEDs. Given your daughter's upcoming skin graft surgery, I'd strongly recommend coordinating between her neurologist and surgical team about timing.
You mentioned she had an MRI and EEG, with the EEG showing generalized discharges. Did the EEG identify where in the brain these electrical discharges originated, or did they appear to be coming from multiple areas? What did her MRI reveal - was it completely normal, or were there any structural findings? Did her neurologist discuss whether the results fit a specific epilepsy syndrome?
Regarding the Mayo Clinic, my understanding is that your daughter doesn't need to be in a critical situation to be seen there. I was seen at Mayo as an international patient even during COVID times. I'm tagging @colleenyoung (Mayo Clinic Connect's Director), who can provide more specific guidance about accessing their epilepsy treatment services.
Wishing you and your daughter all the best, and let's stay connected.
Chris
Replies to "Welcome to our group! I'm so sorry to hear about the difficult journey you and your..."
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@santosha - A unique thing to think about but we don't have enough to go off of. She was late (~15 days / she is not active) getting her period and got her period that evening following the seizure. Can I get more information on how you have been able to control your seizures if she does end up with Catamenial Epilepsy? They say some do not work with seizure meds. Anything we can do medication wise or even homeopathic/Naturalpath wise to get in front of this? I watched her like a hawk when her ovulation hit and luckily nothing but concerned regardless. Is it possible she has just a low seizure threshold and that 15 day late bumped her hormones up like a spike and thus seizure, meaning if she stable and starts normally for this next one, she might be OK. Another ask is whether they have tied any of this to endocrine disorders? All the chemicals out there mess with our hormones so much. Any theories there? She has very low HR / BP and other very similar symptoms to some endocrine disorders, but docs are not wanting to test any of that. Says her blood work looks ok.