Once seizures are controlled, do you reduce meds?

[jennilee]

My daughter, who is ten months old has epilepsy and is currently on Keppra which is the first drug that we have found which keeps her seizures under control. Although it is fantastic that she isnt having seizures, the Keppra seems to be making her look a bit dazed, and she doesnt seem to be focussing terribly well when sitting up. Im wondering if its making her dizzy. Am wondering if people reduce their meds slightly once they find their seizures are controlled so as to eliminate side effects? The neurologist says to keep her on same dose but im not sure that she is comfortable on it. Difficult to know of course because of her age.

 

[epileric]

Even when seizures are controlled they usually keep you on that dosage of whatever you're on for at least a few years. It doesn't really make sense should you finally use medication to control them to stop once they're controlled. Most AED's have side-effects so with adults it's a matter of finding a balance between how badly the side-effects disable you & how badly the seizures disable you.

It's very hard to say with an infant because it's all our speculation as to how she is effected by her meds. My personal advice would be to start researching the alternative methods of controlling seizures to supplement her medication. Hopefully then you can ween her off (or at least lessen) her AED.

 

[Dutch mom]

My personal advice would be to start researching the alternative methods of controlling seizures to supplement her medication. Hopefully then you can ween her off (or at least lessen) her anti-epileptic drug.

This is just what we did. We turned to the ketogenic diet because dfferent combo's of 10 AEDs and benzo's didn't work to control our son's seizures. We had to wean off one drug (ethosuximide) before starting the diet because of sweetners not suitable for the diet. A few months later on the diet, we've weaned off topamax because of double riks of kidney stones together with the diet. Both drugs didn't help to control his seizures but the ketogenic diet did. Allthough the docs were more conservative and wanted him to stay on both diet and clobazam (by then add on to no AED), 6 Months after diet intervention we started weaning him of clobazam, which was the most difficult one with withdrawl symptoms and breakthrough seizures with every small step we weaned. The doc argued the med was working after all (together with the diet) because of this effect, we didn't believe this and persisted in weaning him of clobazam. Now he's on the diet for 5 years and med free for 4 years, not 100% seizure free, but significant seizure reduction and a >70% improved EEG. I believe the reduction of meds was as important for his development as the seizure control thanks to the diet is.

I do know several kids who were weaned of the Keppra (because off side effects) after seizure control for a year or more. Some are succesfully med free, others proved to be dependent on Keppra. Worth a try after a longer period seizure free. Always wean off very slow, even slower than the docs prescribtion in case of withdrawl symptoms (inluding breakthrough seizures as a result of weaning because the brain got used to the meds.)

 

[RobinN]

The side effects of the medication were not acceptable to me. I had a child of 14.
I chose alternatives, which are controlling her seizures far better than any medication did.
I believe being med free was also the reason my daughter has been able to stabilize.

 

[Bernard]

... Am wondering if people reduce their meds slightly once they find their seizures are controlled so as to eliminate side effects? ...

In general doctors/people only reduce medication levels because of severe side effects. If the medications are working (ie. seizures are controlled), then you really need to think hard about whether or not risking breakthrough seizures is worth a reduction in the side effects.

FYI:

http://www.coping-with-epilepsy.com...hen-seizures-have-been-controlled-years-1458/

vitamin b6 supplements can help curb some Keppra side effects

 

[Ruth]

Most of the time Keppra and 4 other medicines I am on control my seizures. Today, I am having several seizures. My doctor is cutting back my meds. He stopped at my last visit when he saw how bad I am becoming. I am under a lot of stress and that is trigger. I also have to have coffee, another trigger, to wake up.

Listening to soft melody music helps prevent seizures.

I would never change my meds without having a serious discussion with my Neurologist.

Ruth