← Return to 13-year-old daughter with refractory epilepsy

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13-year-old daughter with refractory epilepsy

Epilepsy & Seizures | Last Active: Jun 21 9:48am | Replies (20)

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Profile picture for Dan Noyes @dannoyes

@ebrown78 It's so funny to hear you say the words "mystery" because I hear that every time I go to the doctor. I have to remind my doctors that this is why I am seeing them. If my case were easy, then I would have no reason to see the best of the best. Have you been to the Mayo epilepsy program before? I'd love to learn more about your experience. I also want to say that you're doing such an incredible job. The fact that you haven't given up is what sets you apart. You and your daughter are true champions, even if you don't feel like it. Show yourself self-love and know how much you inspire others, even if they don't say it. Keep up the fight and let me know about your Mayo experience.

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Replies to "@ebrown78 It's so funny to hear you say the words "mystery" because I hear that every..."

@dannoyes Thank you for your kind words and advice! We have not been to Mayo yet. We are really considering it because our daughter has been refractory to medication and has had such a strange course. When she was 7, she was diagnosed with focal epilepsy with secondary generalization. She went into status 3 time in the beginning and had so many seizures. They stopped completely after 8 months, and now they’re back 6 years later. All genetic testing has been negative as is her MRI. They say she has generalized epilepsy now.