Epilepsy Foundation

We have an appt. with DS's neurologist next month and we are looking at weaning him off his Keppra which of course has me a nervous wreck but I am wondering what your weaning scheudle was like.    I have talked to some others who said they did it over a period of about 6 months until they were totally off the Keppra.   I already have a bunch of questions for the Dr. about this and what we should be looking for as we wean him off.   I will be a nervous wreck as I cannot be with him 24/7 but I am sure we are not the first/last to go thru this.    Thanks all

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We took just 5 days to wean off.  No sure why it would ever take 6 months!

Recommended weaning is at a similar rate to which you went up to the dose you're at, i.e., 500mg or 1000mg at a time, maybe a week per level. 

We are currently weaning Andrew off of Keppra also.  Our Dr. has us go down 1 ML a week until we are at 0, he started his last week of weening yesterday.  I hope all goes well with changing meds. 

We have tapered my son off Keppra put him back off and tapered again and now he is back on while we taper Phenobarbital.I know all too well about tapering.The doctor will take it real slow a little at a time.Look for any seizure activity and report it.My doctor usally has us go up on 1 of his meds while tapering the other.Or will add Valium at a small dose if his activity spikes wile we taper good luck.

 

 

our nero scheduled us wean for a 3 month wean. we did not achieve it because he got sick and seized, but going to try again this summer.

My son is currently weaning from keppra and adding trileptal.  He was taking 3,000 mg.  1st two weeks he will have 2000mg/day.  Next two weeks will be 1000mg/day.

my daughter just finished weaning off it.  she was uptitrating her lamictal while coming down on keppra.  she started on 700 mg/day.  we went down by 100 mg/day every other week - which was a slow wean.  it took us 14 weeks.  I think it kind of depends how urgent it is for you to come off of it.  if he is allergic or having bad side effects - the neuro may choose to go more rapidly.  our situation was that it just wasn't working - so there wasn't any urgency to taper quickly.  any time you taper an AED, you run the risk of a withdrawal seizure.  I kind of favored a slow taper in our situation.

 

I know what you mean - it's nerve-racking.  good luck to you.  I will say that as much as I thought her behavior had normalized with the vitamin B6 - her behavior got a lot better once we got her off the keppra.

We took only 5 days as well to wean off keppra and wait 24 hrs-36 hrs before starting Depakote.  This had been done in the hospital, where he was admitted for weaning with video eeg.  Our stay was 7 nights.  He did go through mood swings and couldn't sleep-but also with the weaning off keppra, came more disharges/activity.  No seizures though.  But did show us that it use to be frontal lobes, then occipital, posterior region ( right sided) and finally while watching to see what spikes/discharges would come ( with little med in him) they saw generalized.  Thank god- since they were going to switch him to Tegretol for the occipital region-luckily, they saw it was generalized and needed a stronger, broader band med.

Best of luck!:)

My daughter weaned off of Keppra at 250mg per week first morning and the next week then the evening does.  It took about 8 weeks.  She tolerated the wean well.

My daughter is currently weaning off of Keppra and I am so nervous.  The first week which was this week, she had a seizure the first night.  Of course, I don't know if it was entirely from coming off of the keppra or if it is because she was getting sick.  She complained of a sore throat and we had to call the pediatrician that night and he asked to see her the following day first thing.

she has a virus, fever, sore throat etc.  She comes down off of the keppra on Monday again, this time at her morning dose. Then she has about three more weeks of tapering.  I am so incredibly nervous.  Keppra really worked for her, but had horrible side effects. she is now on vimpat.  Could use some prayers please.  Thanks.

Michelle

My son is currently getting weaned off of lamictal and keppra and being put on Topamax. The way that our neuro had us do it was to lower the lamictal slowly, keep him on the same dose of the Keppra (he was on a relatively moderate dose, not very high) and add the Topamax slowly over the course of three weeks. As soon as he is on a therapeutic dose of the Topamax, we are taking him off of the Keppra. I'm really nervous too, but the reason we are having to do this is he started having daily breakthrough seizures out of the blue that were more severe than before he was on AED.

Michelle - keeping you and your daughter in my prayers.

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