Connect
← Return to 13-year-old daughter with refractory epilepsy
Discussion
13-year-old daughter with refractory epilepsy
Epilepsy & Seizures | Last Active: Jun 21 9:48am | Replies (20)Comment receiving replies
@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.
Replies to "@santosha I don’t mind at all and appreciate your advice! She initially started in 2018 and..."
Connect
@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