Hi Caren,
Welcome to the group. I was diagnosed as an adult and none of my
3 daughters have szs. But having 2 children with szs would be frustrating.
You were right to ask the pharmacist to stay with brand name meds.
I have found they work better. And you keeping track of meds and szs etc,
is a great idea!
Do take time to read the previous posts. Although I have had EP for 47
years I have learned so much here.
Millie
> 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.
> long story but basically I keep a log of EVERYTHING and I can look back at
> it and compare the Depakote levels with sz activity and it hasn't been
> working...we'
> go...he's been stable for the last yr only having 1 - but he was having
> multiple sz a day for months and months on end.
>
> 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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