tablet talk

The topic of generic vs. brand AEDs (seizure meds for those unfamiliar with epilepsy lingo)

effectiveness has burned up the forums over recent months.

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If I had a nickel for every parent whose pharmacy switched them to generics...and their child had a breakthrough seizure...

If you're one of those parents...you now have an outlet to share that experience. And hopefully benefit future families by allowing them to more easily access brand meds for their children.

"The FDA encourages people with epilepsy and physicians to report any breakthrough seizures resulting from switching formulations of a product to the FDA's MedWatch program. For information, call 1-800-FDA-1088 or visit the web
site at
http://www.fda. gov/medwatch."


On topic...

It was nice to read...

"The Epilepsy Foundation has had a historical position opposing mandatory substitution of generic drugs for brand name since generics first became available because of concerns about reported breakthrough seizures in some people with epilepsy when they are switched from one version of a medication to another..."

I hope this public statement is indicative of individual involvement should parents need strong advocates when negotiating with their insurance policies?


I also appreciated the information in this article. Again compliments of the Foundation. Be sure to check out the side bar links which include a survey to share your personal generic med experience with The Foundation.


blogzilly said...

Forgive me for lack of info...is a breakthrough seizure a good thing or a bad thing? The word 'breakthrough' is confusing me.

baby trevor's mommy said...

Weird...the thought's never crossed my mind. I've been swimming in seizure lingo for so long now!

For the rest of society breakthrough is a good thing right?!

For seizure parents it's bad.

Breakthrough seizures are those that "break through" the seizure control.

I've heard many stories of parents whose children were seizure free on a brand AED...for instance Zonegran. But when the pharmacy or insurance company switched their RX to the generic Zonisamide...suddenly they're seeing seizures.

Breakthrough seizures can also be a sign that you need to increase the doseage. Which with kiddos and weight gain is common.

And then sometimes children will have a "Honeymoon". Where their seizures are either completely or close to controlled for a few weeks.

It's a lot to digest I know...there's nothing simple about IS! Including access to the drugs our kids need!


Monica, James, Connor McGuire said...

thank you for posting this. i have been working on my rant about it for over a week, but start crying everytime i try to work on it. connor's seizures have been extremely worse, and i feel so guilty for going against my gut and giving him the generic. we've been back on the brand depakote for a week now, and i'm hoping we start to see some change soon. i even tried to call duke to see if we could get in sooner, but no such luck. with each passing day i hate seizures a little more!

baby trevor's mommy said...

Monica...I know sweetie. I'm SO tired anyway. And then to have to fight for drugs for a kid that has 100s of seizures a day?! To me it's mind blowing! Even if it takes you months to put it together...I think you should share your frustration. You're good at sharing your feelings! And another voice adds to the noise!


Love you & your monkey!