Daughter recently Diagnosed - Could she outgrow it?

@melissa1234
I want to express my sympathy for what your daughter and family are going through with her epilepsy. I was about her age when I experienced absence, generalized tonic-clonic seizures and also Status Epilepticus. Over time, I also developed focal aware and focal impaired seizures.
It took me nearly two years to fully accept my diagnosis, and for the next 45 years, my seizure disorder remained intractable. However, at 59, my seizures ceased—as long as I stayed consistent with my medication. Yesterday, I had a tonic-clonic seizure because I missed a dose the day before.
While I can’t predict if her seizures will resolve on their own, there’s certainly a possibility. Always hold onto hope but also prepare for various outcomes. when I was having absent seizures, I'm sure my parents never expected for me to be put into an induced coma for eight months and many more after I came out of that one.
In my experience, the neurologist I saw back then had a knack for making inaccurate predictions—as many of the things he claimed would never happen. If I had a neurologist now (mine has since passed away), I would take their advice with a healthy dose of skepticism. Ultimately, time reveals the truth about these conditions.
When obtaining seizure medication refills, it's crucial to stick with the same manufacturer and avoid switching between brand name and generic versions. This can make a significant difference for some individuals, myself included.
The most vital step your daughter can take is to accept her diagnosis and find her new normal. Her seizures may or may not resolve, but it’s essential not to let stress, anxiety, worry, or depression overshadow what lies ahead. These emotions can exacerbate the condition.
Stay strong and resilient. Blessings to you both,
Jake

My son is 19 and had his first tonic clonic seizure 2 years ago. He then proceeded to have, I think, 13 tonic clonic seizures over the next 5 mos. Thankfully, in that time, we found Mayo and they hospitalized him for a week and now he has a great medicine regime to keep him from seizing. His last one was January 8, 2024. When I ask, they don’t know if he will outgrow them. One of the neurologist at Mayo that we saw said he has seen after 30 being able to come off meds but no promises. I guess the most active time of your brain is late teens and 20’s. I am so sorry you’re going through this. Meds aren't perfect, they make our son tired and foggy headed. His first year of college didn’t go great so he is staying home this year to reevaluate. It’s all so frustrating to have a healthy child and then one day you don’t but I’m thankful he can live a long and mostly normal life. I’m glad there are meds that help him do that.

I don’t really have answers, just our experience, and to let you know you’re not alone. I will never ever get used to seeing my son having a tonic clonic seizure and I wouldn’t wish it on anyone.

Tracey

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

Thank you Chris! @santosha We just tried her on Lamotragine ER, she took her first 25mg pill on Saturday and ended up with a low grade fever, she also felt horrible...lethargic, couldn't get out of bed, when she stood up, she fell back down, no balance, she said she was very weak, extremely weak. Spent the day in bed. I called neuro to see if I give it to her again the next night maybe at night and her neuro said to hold until I saw her this next week. Fever left in evening and then when drug wore off next day she was fine. I am very scared that the best of the seizure meds had a significant impact on her at the lowest dose. I know I run super sensitive to drugs, I normally can only tolerate 1/4 of the lowest of drug meds (I used clonazepam periodically for sleep and take 1/4 of lowest dose). Her EEG showed across the brain - no specific areas - generalized charges. This was taken after her first seizure at 13 which she had due to influenza A. Her MRI taken at the ER was sited as being normal. I of course want all this re-run again as it has been almost 3 years with no symptoms but this next seizure. I see a new neuro next week, but still would LOVE to see how I can get in with a consult from Mayo and to get on that wait list. Thank you for tagging Colleen. @colleenyoung - I would love to hear from you on how I can get a consult with the Mayo team. She is a bit of a unique case. In between her seizures she went through a lot of rollercoaster items that could have easily kicked off a seizure but didn't. Including: Getting her period (which happened at 14.5) and emergency appendectomy which ran 4 days at childrens, staying up late late with friends, being stressed to the hill with dance competitions, travel, etc. I do wonder if she generally has a lower seizure threshold and her hormones are fluctuating, but you would think I would have seen something when she started her period and during that long period of stabilization. Her old Neuro seems to just think it is Generalized Seizure Disorder presenting slightly off (she was young for her first one and nothing then after that). I am pushing to rule other issues out.

@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.

@melissa1234, my apologies for the delay in responding. To start a request for an appointment at Mayo Clinic, you can get started here: http://mayocl.in/1mtmR63

You can submit the request on her behalf. Another option is to ask her doctor to submit a physician referral.

@melissa1234
Hi Melissa,
Thank you for sharing more details about your daughter's situation. I apologize for the delayed response. I'm glad to see that @colleenyoung has already provided helpful information about scheduling at Mayo Clinic.
I'm sorry to hear your daughter experienced side effects with her first pill of Lamotrigine. The initial weeks on a new anti-epileptic drug (AED) can be particularly challenging as the body adjusts and various side effects may emerge. Finding the right medication and dosage often requires patience and persistence - something I've experienced myself. I'm also super sensitive to drugs since childhood, having been mostly treated with homeopathy whenever possible. Fortunately, my current doctor, who understands and respects my medication sensitivity, treats my epilepsy below the typical adult dosage.
Regarding catamenial epilepsy, when I was diagnosed with it, my epileptologist worked together with my gynecologist to find a solution. Together, they prescribed a continuous birth control pill for five months to interrupt my menstrual cycle, which significantly reduced my hormonally-triggered seizures. Since your daughter is younger, this approach may not be appropriate for her. So, please discuss it with both her neurologist and gynecologist. I'm curious to know - does your daughter have regular menstrual cycles? Mine were typically irregular since my teenage years.
Thank you for sharing the details about your daughter's EEG and MRI results. If I understand correctly, the EEG was performed during an emergency while she was already having a generalized seizure, right? Is it possible that the seizure began as a focal seizure at home and had already progressed to a generalized one by the time it was monitored at the hospital? Has she had any follow-up EEG testing since then? If so, were potential triggers tested during the exam - things like sleep deprivation, hormonal timing, flashing lights, etc?
I hope you will soon get the answers to many of your questions from specialized epilepsy doctors.
Chris

There's a possibility depending on where the seizures start. If it was caused by an accident, there's less chance of it happening. I encourage her to exercise, listen to music. And start doing meditation. Keep away from Facebook and other media that can cause anxiety. And if she can find gainful employment to do so. A busy brain can help raise the seizure threshold.
If you have ability to see an Epilogists, do so.

Hi Chris, the EEG is as done 1.5 months following the first seizure so I think that works for valid testing. They did do the standard. Sleep deprivation, hyperventilation, and lights. She didn’t test positive for the lights. We were in the hospital for her skin graft surgery and she had another seizure. Tonic clonic. It was the next day following the start of her period. The hormones weigh on me and I need to start looking at that. She started her period at 14 without issue. Her cycles are a little off but not that drastic. In hospital she was under a lot of pain drugs and it was a high stress PTSD environment with little sleep and a ton of pain. This time I got a Deja vu but it happened a full day before her seizure which again happened in the morning. The neurologist there put her on vimpat. I am concerned it is the right drug for her. And wanted to try Lamotrigine again but we needed something to kick in quickly. Now that we are home she gets highly emotional with anxiety and panic attacks about 30 -50 mins after waking up. The time she typically has a seizure (now two). I can’t tell if this is her brain being lit up or her because she has been through so much. She had another EEG in the hospital. It only showed generalized charges again no focals. Also do you mind me asking what you use to control your hormone epilepsy now?

Also her MRI as clear again. She had one in the hospital.