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Living with epilepsy - Introduce yourself & meet others
Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)Comment receiving replies
@djsmom
You mention “I feel so useless to her” and “I can’t fix it” I think all parents feel like that. But what can parents do? All things considered doctors and pharmaceuticals do a fairly good job. About 7 out of 10 seizure patients are controlled on meds. Of course that’s not helping your daughter but don’t give up. Hope the Keppra works and her seizures are controlled. About 70% of Epilepsy patients have Idiopathic Epilepsy will never know the cause of their Epilepsy. I don’t understand why she is taking Clonidine? Does she have ADHD or anxiety? Since Diastat is a rescue medication I assume she is having cluster seizures. How often do you administer Diastat?
Hope the Keppra works soon and her dose doesn’t have to be increased too much.
Blessings,
Jake
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Her neuro said he feels her biggest seizure trigger is stress and lack of sleep,I have to give it to her at nite, helps calm her and help her go to sleep. It's been very random and frequent lately...last one was 10 days ago, but was close Saturday afternoon while we were swimming. So we took them home and I immediately gave her the dose of lamctil. It took about an hour but it passed. She just seems to be going backwards. Where we had gotten to where we only had 3 or 4 breakthrough seizures a year for 2 years now we're back to 1 about every week or two, with no response to the diastat anymore, I have to take her to the er for Adivan thru an iv.
Have a blessed day,
Dj's mom