I Am Looking For Anyone Who Has Or Has Had A Similar Experience W/Absence Seizures. | MyEpilepsyTeam

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I Am Looking For Anyone Who Has Or Has Had A Similar Experience W/Absence Seizures.
A MyEpilepsyTeam Member asked a question 💭

I am looking for anyone who has or has had a similar experience with seizures. My daughter (16) developed absence seizures at the age of 9. Her neurologist did the sleep testing which showed she had seizures in her sleep (1 to 3 minutes). At the age of 13 she was taken off her medication and did great for 6 months. She took some over the counter medicine for a UTI and had a jerking seizure in the arms. After that she was diagnosed with Juvenile Myoclonic Epilepsy and placed back on… read more

posted February 28, 2023
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A MyEpilepsyTeam Member

You might want to look up information here on Auras and Focal aware seizures. I too have had this kind of seizure event, and they often lead into grand mal seizures, although I had them alone over a few years before the first witnessed grand mal happened.

posted February 28, 2023
A MyEpilepsyTeam Member

My daughter 16mos old has myochlonic epilepsy as well. Brief jerks. She is on kepra, ketogenic diet and epidiolex. Still don’t have full seizure control, working on meds to find the right fix. Can I ask what meds has helped your daughter?
🫶

posted February 28, 2023
A MyEpilepsyTeam Member

I have had these seizures. All you can do is wait until she is “there” again and comfort her. Ask her to make a journal of her seizures. What she ate, how she felt at the time of her seizure.

posted February 28, 2023

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