Daughter recently Diagnosed - Could she outgrow it?

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?

@melissa1234
Hi Melissa!
I'm very sorry to hear about what you and your daughter are going through.
Vimpat is one of the drugs given in emergency situations. When someone has breakthrough seizures, hospitals often use aggressive dosing to stop the seizure activity quickly. After the patient is out of immediate danger, the medication and dosage are reevaluated and adjusted by the patient's regular doctor. I experienced something similar last December when I had a cluster of seizures and had to be taken to the hospital. The hospital dosage caused significant side effects, but my doctor was able to reduce it to a more tolerable level afterward. I hope you and her doctor can find a dosage that brings her more benefits than harm. I've known many people who take Vimpat and are satisfied with it.
Thank you for sharing that additional information about your daughter. Regarding the déjà vu episode you mentioned - did you experience it, or did your daughter? Déjà vu episodes are often associated with simple partial seizures (also called auras) that sometimes precede other types of seizures.
About your question on managing catamenial epilepsy. My neurologist worked with my gynecologist to put me on continuous birth control pills (taken for 5 months without breaks to prevent menstruation). This approach has significantly reduced my hormone-related seizures. However, since I'm 54 and your daughter is much younger, her treatment approach would likely be very different. I'd definitely recommend having her neurologist consult with her gynecologist about age-appropriate options.
Have you been able to follow up with her neurologist since the hospital discharge? PNES and PTSD can indeed co-occur with epilepsy. I recently experienced some PTSD symptoms following a complex partial seizure myself. There are some helpful discussions about this topic here in our group if you're interested:
Epilepsy or PNES seizures?
https://connect.mayoclinic.org/discussion/epilepsy-or-pnes-seizures/
Have nonepileptic seizures/psychogenic nonepileptic seizures (PNES)?
https://connect.mayoclinic.org/discussion/non-epileptic-seizures-or-pnes/
I hope things improve for both of you soon. Please keep me updated on how she's doing.
Chris

Thank you. 1. Vimpat 100mg 2 times a day is what she is on, however that drug is not FDA approved for monotherapy in Generalized Seizure Disorder. I have asked 3 neuros on this and am not getting a straight answer. I have read that they have used it to treat some peoples Generalized Seizure Disorder, but my fear is it isn't enough to hold that flood gate of neuro activity back. It is approval for partial seizures and adjunctive therapy for generalized (only recently). She is tolerating it well, but the question is, is her risk covered being generalized seizure disorder? Or do I need to push to get her on something else. 2. Deja Vu is what she experienced - two episodes before her tonic clonic in the hospital. First one was about 24 hrs in advance of the tonic clonic, then the second one which was much smaller - just a passing quick feeling was about 12 hours before. I know these can be seen as small seizures. The problem is post that tonic clonic they did a 24 hr EEG and it showed no focals. Just again generalized discharges - no seizure activity. Not sure how accurate that is. 3. I understand that if she has a abnormal EEG she isn't likely having PNES seizures. I haven't read that those can be happening at the same time of other seizures picked up on EEGs. Given her electrical load in her brain I would assume anything she is dealing with is just Epilepsy and PTSD symptoms. But I could be wrong. 4. I have talked to a few people about "hormone impacting" epilepsy. Because she is younger it is harder as her hormones are all over the place. I have a lady who was put on estrogen and it stopped her seizures, but I thought estrogen spikes is what caused them so I am incredibly confused. Other docs have said a straight Progesterone pill/etc would be the first trial if they did anything. Current neuros are not focusing on this and I am just fearful for that next "month".

@melissa1234
Thank you, Melissa, for sharing this additional information about your daughter with me.
1.
My doctor once explained that while an AED is developed for a specific purpose - say, generalized seizures - it might still benefit patients with different seizure types. He gave me the example of Depakote, which is primarily indicated for generalized seizures, but some patients with only focal seizures have had excellent results with it. Finding the right AED requires a very individualized approach, as I've experienced myself.
By the way, 100 mg twice daily was exactly my dose when I was taking Vimpat.
2.
About the 24-hour EEG results, you mentioned that no focal seizures appeared, just generalized discharges. Did your daughter experience any déjà vu feelings during this EEG? As @jakedduck1 mentioned, many people with epilepsy have normal EEG results. I, for example, lived for decades with epilepsy without knowing it because all my EEGs were normal. As Jake suggested, getting to an epilepsy center would be ideal if possible.
3.
Unfortunately, you can have both seizures and PNES episodes, as I've recently discovered myself. As I briefly mentioned in an earlier post, after a strong complex partial seizure I had about three weeks ago, the episodes that followed - which I initially thought were simple partial seizures - were actually PNES episodes. These episodes felt exactly like my simple partial seizures, but the hospital EEG showed no seizure activity in my brain during those episodes.
4.
About catamenial seizures, the best approach would definitely be having your daughter's neurologist work together with a gynecologist to prescribe the optimal treatment for her catamenial seizures. If the current neurologist isn't addressing this, I would consider seeking another doctor if I were in your position.
Have you been able to contact Mayo Clinic for an appointment?
Chris

@melissa1234
Thank you, Melissa, for sharing this additional information about your daughter with me.
1.
My doctor once explained that while an AED is developed for a specific purpose - say, generalized seizures - it might still benefit patients with different seizure types. He gave me the example of Depakote, which is primarily indicated for generalized seizures, but some patients with only focal seizures have had excellent results with it. Finding the right AED requires a very individualized approach, as I've experienced myself.
By the way, 100 mg twice daily was exactly my dose when I was taking Vimpat.
2.
About the 24-hour EEG results, you mentioned that no focal seizures appeared, just generalized discharges. Did your daughter experience any déjà vu feelings during this EEG? As @jakedduck1 mentioned, many people with epilepsy have normal EEG results. I, for example, lived for decades with epilepsy without knowing it because all my EEGs were normal. As Jake suggested, getting to an epilepsy center would be ideal if possible.
3.
Unfortunately, you can have both seizures and PNES episodes, as I've recently discovered myself. As I briefly mentioned in an earlier post, after a strong complex partial seizure I had about three weeks ago, the episodes that followed - which I initially thought were simple partial seizures - were actually PNES episodes. These episodes felt exactly like my simple partial seizures, but the hospital EEG showed no seizure activity in my brain during those episodes.
4.
About catamenial seizures, the best approach would definitely be having your daughter's neurologist work together with a gynecologist to prescribe the optimal treatment for her catamenial seizures. If the current neurologist isn't addressing this, I would consider seeking another doctor if I were in your position.
Have you been able to contact Mayo Clinic for an appointment?
Chris

@santosha
Hi Chris,
How do you know they are functional seizures?
Maybe they are epileptic but either to deep in the brain or not generating enough electrical activity to be captured on scalp electrodes. Perhaps you weren't being monitored at the time. If not, what criteria was used to differentiate the seizures as functional versus epileptic?
Take care,
Jake

@melissa1234
Thank you, Melissa, for sharing this additional information about your daughter with me.
1.
My doctor once explained that while an AED is developed for a specific purpose - say, generalized seizures - it might still benefit patients with different seizure types. He gave me the example of Depakote, which is primarily indicated for generalized seizures, but some patients with only focal seizures have had excellent results with it. Finding the right AED requires a very individualized approach, as I've experienced myself.
By the way, 100 mg twice daily was exactly my dose when I was taking Vimpat.
2.
About the 24-hour EEG results, you mentioned that no focal seizures appeared, just generalized discharges. Did your daughter experience any déjà vu feelings during this EEG? As @jakedduck1 mentioned, many people with epilepsy have normal EEG results. I, for example, lived for decades with epilepsy without knowing it because all my EEGs were normal. As Jake suggested, getting to an epilepsy center would be ideal if possible.
3.
Unfortunately, you can have both seizures and PNES episodes, as I've recently discovered myself. As I briefly mentioned in an earlier post, after a strong complex partial seizure I had about three weeks ago, the episodes that followed - which I initially thought were simple partial seizures - were actually PNES episodes. These episodes felt exactly like my simple partial seizures, but the hospital EEG showed no seizure activity in my brain during those episodes.
4.
About catamenial seizures, the best approach would definitely be having your daughter's neurologist work together with a gynecologist to prescribe the optimal treatment for her catamenial seizures. If the current neurologist isn't addressing this, I would consider seeking another doctor if I were in your position.
Have you been able to contact Mayo Clinic for an appointment?
Chris

2. She didn't...
3. How can I address treatment for PNES to be proactive if there is a blend of what is going on here? She clearly has discharges across her EEG so obviously Neuro has said she has epilepsy and will ignore PNES likely (I haven't brought it up). But if I can treat PNES while treating epilepsy then we might be better off.
4. She hasn't ignored it just said we will discuss later. She is 15 and they do not get a gyno until post 21 now so I am going to see if I can get her in now so we have it on the calendar.
5. Yes - I submitted the paperwork, they called, logged my insurance and said they would get back to me in 2 weeks.

Question - what is an epilepsy Center? I have had 2 EEGs (morning test upon first seizure at 13), 24 hour test post 3rd Seizure and I have another morning standard EEG test in Oct (that I am waiting for). What else can I do ? I will do whatever I need to just need to know what other options. In Colorado there is only 1 predominate Children Neuro center and that is Children's Hospital. There are a lot of other options for adults but not Children.

2. She didn't...
3. How can I address treatment for PNES to be proactive if there is a blend of what is going on here? She clearly has discharges across her EEG so obviously Neuro has said she has epilepsy and will ignore PNES likely (I haven't brought it up). But if I can treat PNES while treating epilepsy then we might be better off.
4. She hasn't ignored it just said we will discuss later. She is 15 and they do not get a gyno until post 21 now so I am going to see if I can get her in now so we have it on the calendar.
5. Yes - I submitted the paperwork, they called, logged my insurance and said they would get back to me in 2 weeks.

Question - what is an epilepsy Center? I have had 2 EEGs (morning test upon first seizure at 13), 24 hour test post 3rd Seizure and I have another morning standard EEG test in Oct (that I am waiting for). What else can I do ? I will do whatever I need to just need to know what other options. In Colorado there is only 1 predominate Children Neuro center and that is Children's Hospital. There are a lot of other options for adults but not Children.