13-year-old daughter with refractory epilepsy

@santosha I don’t mind at all and appreciate your advice! She initially started in 2018 and had her last seizure on 2/14/19. About two and a half years later she started with absence seizures around age 11. She got her period in 12/23 and around that time started with myoclonic jerks, which seemed worse when she was menstruating. On 12/25/24, she had a TC. After that her myoclonics increased through March of this year and then completely stopped by the end of March. On April 4 she had another TC. Then she had one TC a week in April. In May she had 20 TCs and continues in June. She had a EMU stay at the end of May where she had a dose of steroids and added a new med. She is taking progesterone as well. She has had negative MRI and WGS.

@ebrown78
Thank you for sharing that additional information with us.
I am sorry to hear that the previous experiences your daughter had at epilepsy centers have not been of much help.
As a doctor once explained to me, seizures can start before the first menstruation because of hormonal changes. Perhaps this is what has happened to your daughter? As I suffer from catamenial seizures (hormone-related seizures), my doctor, together with my gynecologist have put me on a birth control pill that I take without pausing for up to 6 months. It has reduced my seizures triggered by hormonal changes greatly, especially while menstruating.
You mentioned your daughter's seizures start with focal ones evolving to secondary generalized seizures. My seizures also start with focal ones, and I was diagnosed with temporal lobe epilepsy. The first MRIs I had, did not show any brain damage; all was OK. But later, through a specific MRI, it showed that I have a small mesial sclerosis in my temporal lobe, a type of epilepsy which is known to be highly refractory to medication. My epilepsy is also not genetically related; it was caused by an accident I had when I was 5 years old. It remained silent until I started puberty.
Today, after several trials and errors in my epilepsy journey, my seizures have been under control for 5 months already with Keppra. So, there is hope!!!
You said that your daughter is taking progesterone daily. Has this changed her seizure pattern during her menstruation?
Do you know in which part of the brain the seizures of your daughter start?
I hope Mayo can bring you new perspectives and treatment options!
All my best!
Chris

Hi @jgu
Nice to hear from you again! I'm so happy to know that your MRI showed no brain damage 🙏 – that's wonderful news!
You asked about the MRI that first revealed my small mesial sclerosis in the left hippocampus. I'm sharing the details below:
MRI Technique: Magnetic resonance imaging with multiplanar reconstruction sequences including Sagittal T1-weighted, volumetric FLAIR; Axial T2, diffusion, FLAIR; susceptibility-weighted imaging (SWI); and volumetric T1 with post-gadolinium multiplanar reconstruction; post-gadolinium Coronal T1 with fat suppression.
I know this is full of complex medical terminology that's hard to understand, but this is all the technical information I have available on this MRI.
It's important to remember that not all types of epilepsy show abnormal MRI findings. For example, in temporal lobe epilepsy, cases involving the lateral temporal lobe have completely normal MRIs.
How did your follow-up appointment with your doctor go after getting your test results? Were your exams able to help identify what type of epilepsy you have or pinpoint where your seizures originate?
Chris

Hi Chris,
Thanks so much for the information! I had brain MRI and 72h EEG early this month. My appoint with docotr was reschdule to next month. My doctor did call and told me that the EEG seems normal too :-(. My medication changed from 1000mg per day of Keppra to 2000 mg/day, now 3000mg/day with ER version. It seems my seizures still happens 2-3 times/day (only when I take a nap in the afternoon or when I sleep at night). It has been more than a month and half since I took the medication. I am very frustrated. Just a quick question - you do not have to answer it. Have you consider the surgury options since you know the lesions that cause your seizures? I asked this because I was trying to lay out my options. And you are so knowledgeable! Thanks a lot!

Jgu

@ebrown78
Thank you for sharing that additional information with us.
I am sorry to hear that the previous experiences your daughter had at epilepsy centers have not been of much help.
As a doctor once explained to me, seizures can start before the first menstruation because of hormonal changes. Perhaps this is what has happened to your daughter? As I suffer from catamenial seizures (hormone-related seizures), my doctor, together with my gynecologist have put me on a birth control pill that I take without pausing for up to 6 months. It has reduced my seizures triggered by hormonal changes greatly, especially while menstruating.
You mentioned your daughter's seizures start with focal ones evolving to secondary generalized seizures. My seizures also start with focal ones, and I was diagnosed with temporal lobe epilepsy. The first MRIs I had, did not show any brain damage; all was OK. But later, through a specific MRI, it showed that I have a small mesial sclerosis in my temporal lobe, a type of epilepsy which is known to be highly refractory to medication. My epilepsy is also not genetically related; it was caused by an accident I had when I was 5 years old. It remained silent until I started puberty.
Today, after several trials and errors in my epilepsy journey, my seizures have been under control for 5 months already with Keppra. So, there is hope!!!
You said that your daughter is taking progesterone daily. Has this changed her seizure pattern during her menstruation?
Do you know in which part of the brain the seizures of your daughter start?
I hope Mayo can bring you new perspectives and treatment options!
All my best!
Chris

My pleasure @jgu!
I imagine you must be feeling anxious about the rescheduling of your doctor's appointment, which is completely normal when you're still trying to understand your situation. Don't worry, time flies—your appointment will be here soon. Try to stay busy with activities you enjoy in the meantime.
Regarding surgery, doctors investigated that option for me, but my sclerosis is located on the left side, which is the dominant side of my brain. Surgery wasn't recommended because the potential risks could outweigh the benefits. This is why it's so important to complete all the tests your epileptologist orders—he or she needs a complete picture to determine the best treatment options for your specific situation. I know this screening process and all these tests can feel overwhelming, but you'll be amazed by your own resilience when you get through it.
As for EEGs, all mine were normal until I was 48 years old, meaning no epileptic discharges showed up during those tests. However, having a normal EEG does not rule out epilepsy. Even today, my EEGs appear normal because of the medication I take, but I still have epilepsy.
During your 72-hour EEG, was your medication reduced? Were you put in situations that might trigger your seizures, like the afternoon nap you mentioned?
Chris

Hi Chris,
My doctor told me not to discontinue the drug during the 72 h EEG. I acturally had 3-4 seizures during those 72 h EEG period. My wife took the time down and provided those to my doctor. Just do not understand how would I had seizures but EEG did not show. I will ask my doctor in the next appointment.
Thanks again for all your advises.
Have a great weekend!

Jgu

Thank you for sharing your story! My daughter originally started with intractable focal epilepsy with secondary generalization at age 7. It went into remission after 8 months. She was seizure-free for over two years and then started with eye rolling episodes . Then about a year and a half ago started with what we thought were myoclonic jerks. Those would happen occasionally and seemed to worsen when she’s menstruating. She had a cluster of those jerks on Christmas and then had a tonic clonic. She went on progesterone in January but her cycles are still bee irregular. In April she started having TCs weekly and then in May, they became very frequent. She has had 2 hospitalizations in the last month. One hospital said that seizures are generalized and the other focal. The most recent said right focal.