Hi Everyone, I haven't read any of the previous post - just wanted to hurry up and get this out there. I do belong to another Epilepsy group but they've been really slow and I need some help!
Our oldest son Logan is 5 and was dx with refractory Epilepsy at 3 1/2 yrs. He's had every single different type of seizure, we've tried 13 different meds, went gluten-free in the beginning, failed the Keto and have been on Depakote & Keppra for the last yr. We're weaning the Depakote AMA - the neuro is helping us but its not recommended.
Logan was pulled out of school for a while, had to re-learn a lot but to everyone's amazement he is doing great and continues to make progress every day despite being denied all the "services". I quit my job of 17 yrs to stay home with the kids.
Our younger son Wesley started having seizures a couple wks ago and we're just shocked! The dr says it's familial but there is no one in several generations that can say someone had a seizure. Wes had been dx with hand, foot, mouth disease – was running a fever of 104.3 but then was on the mend and back to preschool for 3 days when the first sz happened. We thought it was the virus and that'd be the end of that…all his test at the ER were clear and his EEG later was normal. He another sz one a wk later and now has had a couple more since then…pretty sure its not the virus :-( we started meds last night, using the same that Logan's on Keppra…hoping n praying that it works and we wont see any aggressive behavior that is so common in Keppra (Logan has not had any aggression). His EEG the other day was "showing changes that are seen in kids with seizures"...
Brooke, Wesley's twin sister - died at birth...7 months later Logan uncontrolable seizures...1 1/2 yrs later Wesley develops seizures! I feel like i'm gonna loose it! I almost started a fight with the pharmacist last night bc they were gonna give me generic keppra for Wes...she saw my anquish and said they'd take care of it...they put on both Logan and Wes rx "do not convert". i was so thankful I didnt have to fight that fight that I was crying by the time I walked out the door!
So that's me in a nut shell...Wondering if anyone out there in the same boat with siblings having seizures? Hopefully will have some time soon to read about the group.
Caren
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