KEPPRA!!! OMG please help!

Jenia - posted on 04/20/2010 ( 31 moms have responded )

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Seriously, this is the drug from he!! for my baby :( He was on Keppra in January and it made him extremely violent and hyper active, plus he was still having seizures every 2 weeks or so. I couldn't control him at all. The Dr had us to wean him off of the Keppra and put him on Topamax and trileptal. I immediately noticed a change in his behaviors. He was calm and could actually focus on things, when he could not do that while on Keppra. Well 2 weeks ago, he came down with strep throat and bronchitis. He suffered with high fevers for 3 days (easter holiday) and then went to the clinic and got a penicillin in jection. Came home and 4 hours later he started having seizures, non stop. We took him to the ER and he was given a huge dose of Keppra and admitted for observation. He didn't have any more seizures in the 24 hours of observation, so he was admitted and we were told to continue his current meds, and he didn't need the Keppra. 2 days later, he started seizing again. Everything set him off anf he was having seizures like every 10 minutes. He was admitted again, and of course, given Keppra. This time they kept him for 3 days and on the Keppra, he didn't have any more seizures. So of course, he was discharged on Keppra in addition to his trileptal and topamax. He's taking 1.5ml of Keppra twice a day. His violent behaviors have returned. He's getting bad marks in school, he's destructive, loud, and extremely defiant. He goes into time out almost all day long. I cannot handle him while he's on Keppra and it's very frustrating to me. I called to schedule an appt with his neuro but he can't see my son until May 26th. There is no way I can make it like this for over a month! Is there anything I can call and ask of the Dr over the phone?? Anything I can try OTC? I really need help before I lose my mind...

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Stephanie - posted on 10/25/2013

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What a ride Keppra has been for our son and our family. He was put on this medication in the ER after a seizure in 2010 one month after his 10th birthday.. We noticed that his behavior changed immediately and we were told to give him b6 twice a day to help the "keppra rage" symptoms. Our son went from being a mild, funny, artistic child to crazy rages. One day not long after he was on the meds he started to hit me on the head with a styrofoam swimming board at a public pool. Things like this would happen off and on. We would ask about switching to other meds but we would be strayed away when we were told about potential side effects of them. A month after his 12th birthday he started to have panic attacks which we originally thought he was having migraine headaches because they run on my side of the family and thought with puberty he was starting to get them. He would not like bright lights and would have what we thought was the aura sensation. After about 6 months I realized they were panic attacks. Full blown with dialated eyes, heart palpitations, sweating, rapid heart beat and fight or flight response. They became worse after a year of this to the point he did not want to leave the house to go anywhere not even to ride his bike. He completely shut down and we had to take him to a psychiatrist and therapy. The school had to make big accommodations so that we could get him to go because it was so bad that he became agoraphobic. The mornings were horrible on school days. It was devastating to say the least. He had to be put in a small classroom and he couldn't eat in the cafeteria or be in the hallways in between classrooms as he could not be in crowds or busy noisy places. Through this I began researching more and more about keppra and found that people had horrible anxiety panic attacks on it. Some also not being able to leave their homes. At this point I told the neurologist we wanted him off the keppra. It took 7 weeks to wean him off of it and get him on a full dose of Lamictal. So now he has been off of Keppra for one week and today for the first time in 3 months he was able to go into Target. He has not been since July. His whole mood is different and I can see his personality coming back. I am so thankful to all of the parents who shared their stories and made me see that I wasn't imagining all of this and Keppra has stolen three years from my son! If you are having any doubts or questions about this drug you are probably correct!

Amber - posted on 06/28/2010

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my son takes keppra and topomax. keppra actually makes my son focus. without it he is so hyperactive its unreal. good luck with it all!

DARLENE - posted on 04/21/2010

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sorry to hear that my daughter is on Keppra 10mls twice a day. from what I have seen with her is that her seizures happens when she's sick or toothache. so her dr told me to just go up to 2 more ex tsp and right away within an 1hr or less she's fine.the only problem she has is nightmares I want to try other meds maybe I get the nerves up to do so. good luck hope to hear from u in da future

Jenia - posted on 04/21/2010

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He's already on Topomax and Trileptal. The Keppra is in addition to those meds. I didn't give it to him last night and he was like a different child today. He even got better behavior scores at school and currently he's upstairs playing with his toys and for once, he doesn't sound like a caged animal! I'm calling and asking the Dr to take him off of the Keppra.

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CRYSTAL - posted on 09/07/2013

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i know this post is old but i feel you my daughter is on keppra and she gets violent as well we cant see the dr till sep 27th and the school cant handle it and neither can i

Amber - posted on 05/09/2012

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I am going through this with son who 9 he can't sit still he is in trouble every day ..he went from A's and B's to straight D's going crazy after a yr he is taking him of and he will b taking trileptal and depakote ..

Shawn - posted on 04/14/2011

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I'm in Louisiana too. We use Children's Hospital in NO. My daughter was put on Keppra and it did nothing for her. She was sick over the weekend and could not keep anything down from Sunday till yesterday. Not getting her Topamax made her very aggressive. I spoke with her Neuro and was told that Topamax does have a little something extra for behavior. She also has a VNS which has controlled her seizures. Keppra did nothing for her. She was on the Topamax/Triliptal combo for 3 years. After VNS, she is only on Topamax for seizures and Tranxene to help her sleeping.

Jacinta - posted on 04/12/2011

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ring the doctor seems to be the best idea.Each child is different and what works for one seems to make another worse. Ther are a few natural things you can discuss with your doctor.As well as not instead of medication! My boy was on epilim and having rashes and rages I put him on effalex ( A fishoil Complex) for his rashes and it really helped for them and seemed to improve his concentration and mood swings. Tjhe other thing that helped him was eliminating evrything with artificial colours, flavours,and preservatives and flavour enhancers from his diet.as I say each child is different. I hope this helps. it is a hard road we travel

Carrie - posted on 07/17/2010

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My step-daughter was on Keppra and made her really violent and moody as well. They recently took her off of it and put her on Depakote. It has been a tremendous change! No more rage and NO seizures in over 2 months when she was regularly having them!

Shae - posted on 07/17/2010

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We had a hideous experience with the Keppra. Seizure activity increased to between 30 and 100 grand mals and petit mals per day. In between seizing and sleeping she would scream, for hours and hours until her voice would give out. Weaning her off the Keppra caused immediate improvement that continued to get better over time. We now have NO screaming fits and her seizures are down to between 4 and 6 per week! Meds can affect different bodies in completely opposite ways. Congrats on staying strong and demanding that a doctor listen to your concerns when you saw a dramatic change in your child! Glad to hear your doctor listened and agreed with your assessment.

Michelle - posted on 06/30/2010

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Wow, that must have been quite an experience. So sorry your little one had to go through that. I have been to a pediatric neurologist for my daughter as well as two other neurologists. They have all told me that Keppra was the one with the least side effects. Then, I come here and see otherwise. So sorry you all have had problems with this drug.
For my daughter Keppra only made her moody while she was increasing it and only for about a day or two and then she was fine. Topamax was horrible. Her grades started going down in school and she was forgetting things and very moody. Of course, she is also eleven so I can't blame everything on the drugs. When my daughter got off of Topamax she was herself again. So, what works for one might or might not work for another.
Michelle

Colleen - posted on 06/29/2010

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My daughter was on keppra . She is taking trileptal phenobarbital and the new one is depakote. Depakote is working great!!!

Leah - posted on 06/23/2010

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my daughter went from absense seizure (on Zarontin) to tonic clonic seizures in a 5 mth period. She was put on Keppra and it made her rage and flip out uncontrollably, and sent her absense seizures throught the roof (70-100 per day), we weaned her off and the absense seizures stopped almost immediately, 100%. She is now on Valproic instead with the zarontin. We are still dealing with rages, but not as bad, but she is having issues with no appetite, and now vomitting up her meds. We are prepping now for the ketogenic diet. But in my opinion, Keppra was a horrid, awful drug.

Brandy - posted on 04/30/2010

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my son is on predizson and with in two weeks of being on it they were gone and that was in December and it's now may as of tomorrow so he is doing well

Katrina - posted on 04/30/2010

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hi my name is katrina and i have a little girl who will be 3 this year and she was born with seizure and she was put on kepperwhen she was 1 1/2 years old and she still has them but she is doing good. she was on zonegran but her dr took her off that and put her on depeco and they work good

Brandy - posted on 04/28/2010

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Hi there my son was born with them so he as been on alot since he was born just this past December my doctor but my son on steriods and with in two weeks his seizures were gone and its been the same for 4 months with no seizures at all so my advice to you is to hang in the and give the meds time to work not everyone handles differents the same. i hope all the best and if you would like to talk to me more you can add me as a friend to fb i will be there and listen to you when you want to talk. hang in there.

Mary - posted on 04/27/2010

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My son is on Keppra 250mg. I fully understand what you are going through! Infact, I just spoke to JJ's peds nuerologist this past week because he was totally out of control mostly at school but at home as well. He also is on meds for adhd, so they thought maybe it was time for a change in them. My anser to that was no, he was fine on those meds prior to this Keepra!. She said to decrease his dose at night by 1/2 tablet, hopefully without any break through seizures and see what happens. After one day, he seemed a little better, after 2 even more. He is still easily aggitated, but wow what a big difference it has made in such a little time. No break through seizures either at this point. Try talking to your peds nuerologist and see what they think. I do beleive that Keppra is a great drug for the control of seizures but sometimes it does cause utter turmoil.

Vauny - posted on 04/27/2010

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the reason for the keprra ask i posted below is it has the least amount of long term issues, like some other meds have kidney failure, and liver failure and so much more, my daughter has the best neurologist in the pacific northwest and thats by the national neurology poll, and she has high rates, but the other meds can cause some other major problems but keprra has the side effect of the behavioral issues and no other long term effect in the body. my daughter has been on keprra for over 6 months and she isnt too bad, and she has only had a few small seizures the blank stare ones, that when she come back she is confused and thats awesome since they arent the shacky ones or the vomiting one or the ones that get you placed in the hospital. but yes they prescribe it for the reason they are trying to save your children from having long term health problems.

Vauny - posted on 04/27/2010

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hello: well i am glad that you spoke with the dr, i would say that if there is a problem with more seizures and they are going to give the keprra let them give it at the small does ,and if they want to see him on it again, then do a small does like every other day or every 2 days to make it so its not a huge amount in the system but there enough to control the seizures, my daughter is on keprra and she takes 2 ml's two times daily, and she has a little additude some times but nothing that bad, and her neuroogist is hte best in the pacific northwest. the reason they put children on keprra is due to the fact that it is the one medication that has the least amount of long term effects, some of the others have a high rate of liver failure, kidney failure or kidney problems, high fevers, low ammunities, and so much more. they also have behavioral studies in eveyr state that help you with children with specail needs as my daughter is seeing one and they are helping me with the side effects of some behavioral issues. any ways let me know how it goes, like i said they might want to place him back on it, and if so i would space the does out to make sure hes not getting to much and no anger or any thing like that. Good Luck

Danette - posted on 04/24/2010

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my son has many specialists, my advice always is keep calling until they take you serious also some have cancellation lists which can help get in sooner. if they dont have a list and you need to get in you can call every morning to see if there is a cancellation today. since this is a huge inconvenience i only do it when i really need to see one of his doctors---sometimes if you only need to discuss meds or get prescriptions they will do it over the phone and fax the prescription.

Fara - posted on 04/24/2010

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I am new to this circle. I was reading about the vitamin B6 and wanted to know why your doctors have to say whether you can put your child on it or not since it is something that you can just buy right off of the shelf? My son was born with hydrocephalus and as a result he has a shunt and epilepsy. He has been having seizures all of his life, he had one that lasted 8 minutes and was in the hospital. They thought he was a goner there for a minute. That is the scariest experience. Anyway, I have seen him go through medications with no help of relief. He is on keppra, banzel and zonisamide right now. He has the same side effects as your kids with the keppra, he is my hell child right now and I don't like it. If keppra has such horrible side effects on kids then why are the doctors continuing to prescribe it? I do notice that when my son's allergies kick in or he starts to get sick that he will have his drop seizures and can have up to 6 a day.

Malinda - posted on 04/23/2010

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oh my yes i have gone through a rough time with a child of mine we took him to see nero all meds he had been placed on he was having a reaction moody and all even topamax and antitrptaliyns so we had moore blodd work done it showed very low sodium counts dr was very concerened all things need sodiums to live he placed him on depakote it was amazing for him id suggest more labs because later i found i myself health is poor but i was placed on colazepam that helps alot i have mixed connective tissue desease and lupus sle and sjogegens so it could be labs need re ran never feel bad take notes and tell drs and ask lots of guestions keep a log book of things he eats or drinks also what where when god bless ill check on u later

Latoya - posted on 04/22/2010

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i have custody of my niece and she is on keppra also and i found that she was becoming very defiant as well the doctor told me to try 100mg of vitiman b6 and it has worked well so far. it took about 2 weeks to notice the change but it did help her. hope this helps u to. hang in there.

Jenia - posted on 04/22/2010

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Spoke with the neurologist this morning and he agreed that we could take my son off of Keppra.

Stacey, I'm in Louisiana.

Stacey - posted on 04/22/2010

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Hi!

Yes call and explain that you need a different medication. There are lots of others, but it's best for the neuro to decide because I don't know the specifics of your childs type of seizures. You need to tell them that his quality of life and your sanity need a different medication. I have a nearly 9 year old with intractible seizures; meaning we have them every day, no matter how many meds we are on, or what we have tried. A VNS failed for our daughter too, and the keto diet. Where do you live?

Jenia - posted on 04/21/2010

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Jennifer, he's on the lowest dose so he didn't need to be weaned off. We've been through it all before so I pretty much know how it goes, unfortunately...

Darlene, that's what I read, that the seizures tend to worsen when they get sick, so that explains the awful seizures and the hospitalization when he came down with strep throat. He has had such a great day today so I am not giving him anymore Keppra. I'm calling the Dr tomorrow and asking about using the Keppra when he gets sick b/c he was doing just fine on the Topomax and Trileptal alone, so I don't really see a need for the Keppra now.

Jennifer - posted on 04/21/2010

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Did you get discharged with instructions on how to take the Keppra off? I would think they would wean him off. Another thing you can try is Vitamin B6 50-100mg. My son is on Keppra and this helped with his behavioral issues. Good luck and if it gets too bad demand neurologist on call or just go through ER. Poor little guy.

Jen K

Teresa - posted on 04/21/2010

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hi im new here but my daughter was just taken off of Keppra and put on Topamax because of it making her violent and not controling her sezuires very well...i love it shes my little girl again and we havent had any major seizures since november talk to you neurologist and see if a switch is best or not it could be

Heather - posted on 04/20/2010

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my son is on keppra and has been for a long time. his neuro prescribed vitamin B6 to counteract the behavior issues- works like a charm! talk to your neuro about it. hang in there. things will settle down eventually.

Amanda - posted on 04/20/2010

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my daughter is on keppra 2...i call it the miracle drug cuz its the only thing that cured my daughters seizures...she still has them but it happens like every 6months or so..she is also hyper active...but not 2 bad...call the neoro dr. and tell them whats going on..or split the doses up threw out the day..so he wont feel the full effect from keppra..hope i helped..every kid id different n each drugs..hope they find 1 that works..good luck and god bless.

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