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13-year-old daughter with refractory epilepsy
Epilepsy & Seizures | Last Active: Jun 21 9:48am | Replies (20)Comment receiving replies
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.
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@ebrown78,
Good Morning
Thank you for sharing these additional details about your daughter's journey. I can only imagine how challenging this must be for both of you, especially with the recent increase in seizure activity. What gives me hope in your story is that your daughter has already shown she can achieve remission - she was seizure-free for over two years!
The connection you've noticed with her menstrual cycle is actually very valuable information. You're clearly an observant and devoted mother, tracking patterns and advocating for your daughter. Catamenial epilepsy is well-recognized, and the fact that this has already been addressed is a good sign. Like your daughter, I also had very irregular cycles when I was younger - it wasn't until my forties that they finally became regular.
I came across an article this week that made me think of you and your daughter:
https://www.myepilepsyteam.com/resources/types-of-epilepsy
Have you been able to connect with one of Mayo's epilepsy centers yet?
You're both in my thoughts, and I'm hoping for calmer days ahead for your family. 🙏
Chris