Keppra

Kathie - posted on 02/01/2010 ( 25 moms have responded )

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Hi everyone,

First I want to thank Sandy for being there for me last night. My daughter has been diagonsed with Epilepsy with Atonic Seizures but not typical she is 12 years old. She is on Lamictal and Keppra. Since we have increased her Keppra she has had major mood swings and flips out a lot. Last night was horrible, she was uncontrollable for 1 1/2 hours took a 1/2 hour to calm her down. Once she was calm, she has no clue why it happened.

I called the doctor and he wants us to wean her off the Keppra. So we are going to do that and are hoping the Lamictal will be enough to ward off the seizures. I think we are in for a rocky road.

Has anyone else had any problems like this with the Keppra? It is so scary and I am so upset that my baby is going through this crap. I feel so helpless can't make the seizures go away.

Thank you for listening! Thank you too Sandy! :)

Kathie Kelly
Katie's Momma

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[deleted account]

My daughter was put on Keppra at 5 months old. She did have mood swings but she was also on Phenobarbitol for 3 months before they added the Keppra. It worked for a few months but then the seizures came back. she is now 20 months old and still has 3- seizures/day. She is now on 5 seizure meds and I am about to tell the neurologist next week that she is overmedicated with no positive results. I'd give the Keppra a chance. I also suggest getting the pill form and a pill crusher, since Keppra is a very sticky liquid. I crush up all of my babys pills and then using a syringe, I mix in the milk and squirt it into her mouth...less mess! Good luck to you and your child

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Sarah - posted on 02/15/2010

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My daughter is currently on keppra and to start out she had mood swings but not anymore. We recently upped her amount of keppra she is taking but havent noticed anything different.

Shirli - posted on 02/11/2010

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Kathie, so sorry to hear about the trouble your daughter is having with her meds. I started taking Keppra while in the hospital with pneumonia. I haven't noticed any side effects, other than a headache and being slightly "jumpy". But to get rid of those I'd have to be doped up totally. Some of my meds cause headaches, so I've learned to live with them.
As for your daughter, yes the road is going to be rocky if her medication doesn't work. It may take several trial and error periods before they find the right meds. But whatever she ends up taking, blood work is important. It makes sure that her blood level is good, or needs to be decreased or increased. Once they find the medications to control her seizures, then the bloodwork will be done every six months to make sure that everything is o.k. Painful, but necessary, unless she likes to have her blood drawn!! I don't, but it has to be done. Just keep her in the loop and let her feel that she is being part of her treatment. She is the only one who can tell you how she feels, and with daily medication, that's important.

Kathie - posted on 02/08/2010

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Thank you Sandy! :) I thank God for Anthony getting us together! You are my angel!

Sandy - posted on 02/06/2010

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Do you have emergency meds at home?? Ativan or Diastat. I have both, depending on how bad the seizures are as to which one I give him. Trial and error, sure is!! Joey has me so stressed out that my headaches are so bad that I just shut down. You son is probably ready for an increase in his dose. I wish you luck!!
Sandy Lora

Robin - posted on 02/06/2010

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My son has tonic seizures and absence seizures since he was 4 years old, he is now almost 7. He started with Phenobarbital at 6 1/2 mos old after he suffered brain damage from bacterial meningitis. The seizures finally made it's appearance when he was 4. We switched to Keppra, and did nothing for him. We then went to Depakote which did help and now he is on Depakote and Lamictal combo. He has not had a seizure for 6 mos until Christmas when he had 2. Yes, it's scary when they have the seizures and there is nothing we can do to help them other than give them a hug. Everyone is different and reacts differently to meds. You have to find the right drugs and doses and is all trial and error.

Heather - posted on 02/06/2010

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I have heard a lot of people call it Kepprage. My daughter had HORRIBLE behavior problems on Keppra. I wish the doctors would be more up front about that side effect of the med. My daughter's behavior got much better after we took her off. Good luck!

Michelle - posted on 02/06/2010

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My son has been newly diagnosed with Seizures. He is 6. The first medicine they put him on is Keppra (generic form)....I thought the does was wrong...seemed kinda high to me...He is taking 750mg twice a day. He's been on it for almost 3 months now...goes back to the doctor in a few weeks. Since he's started taking the Keppra he's had serious Rage and Anger issues. He is a whole different person. He also has memory issues to where he can't even tell me what he's had for lunch. The last problem we've had with it is stealing. Since he's been taking it he will still small senseless stuff that he doesn't need like Marker caps, close pins, napkins, packets of mustard and ketchup...he doesn't even like mustard...but he can't tell us why he's doing this. I went and seen a neurologist myself and was put on Keppra xr 500 even thought I'm not showing signs of seizure activity...yeah...no idea there but I've noticed and my family has noticed that I snap alot easier...EVERYTHING makes me angry...extremely angry...I don't like this medicine at all. I want my son back.

Dee - posted on 02/05/2010

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My step-daughter, Victoria, was diagnosed with tonic-conic seizures when she was 5. She is now 9 and is on Keppra and Carbatrol. Her last seizure was in Oct. 2008 and just recently we have been dealing with anxiety issues and aggression. Since I am a Special Ed teacher for Spurwink, I have been able to work with her on recongnizing her escalation stages and what she needs to do to "regulate" herself. If anyone out there needs some "recommendations" for coping strategies at home, please feel free to email me...dee.pouzol@gmail.com.

Sandy - posted on 02/05/2010

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Joey was on Trileptal and Keppra when he was little and did fine except for still seizing. We pulled Keppra and have been adding and taking away one drug after another in an attempt to control his seizures. All kids/people are different with hormones in all different stages so some medicines work for one and not for another and what is worse are that some have no real bad effects while others bounce off the wall with meanness and all sorts of stuff, including seizures. Warning: Joey didn't go through the terrible 2's until he was about 4. LOL He was behind in his teeth coming in too. But he's made up for all of it. Over the summer at 10 years old, he went through puberty. He sprouted to about 5 feet tall and slimmed down. But the seizures have gotten worse, again. Give and take. I want to take, take, take but it doesn't work that way. I started him on an addition seizure drug last night but it will take time to see results, if there are any. An interesting situation: 2 years ago, I added Keppra to his Trileptal but it had horrible side effects!! Mean, aggressive, it was so horrible!! This did NOT happen when he was around 2 ~ 4 years old. Body chemistry, hormones, age ... it all makes a difference in finding seizure control. Good luck with your son.
Sandy Lora

Shonda - posted on 02/05/2010

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my son started out on Trileptol and OMG he was a MESS-- totally opposite of what the drs said he'd be-- they told me to expect him to be sedated, gain weight, etc... he was MEAN, refused food-- and was only a year old-- so we switched him to Keppra he's done well with it.. of course he's still little (not quite two yet) so mood swings could still be a problem as he gets older and his hormones start to change-- glad I saw this-- I'll keep an eye out for that... so far the Keppra seems to be controlling his seizures too...

Ann - posted on 02/05/2010

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hi

my youngest son, aged 22 in a few weeks takes keppra dosage - 3000milligrams a day, pizotifen - 500micrograms a day, clobezam - he has up to 60milligrams a day as needed in times of stress or excitement e.g. big events like christmas etc. and his rescue med is buccaal midazalom, he still has about 20 grandmal seizures breaking through in a year his side affects are minimal in comparison to the benefit of seizure control. his original tests show that he fits continually for 24hrs a day through a wide spectrum of seizures, so i realsie that without these medications he probably would not be here. good luck with the changes and take care of your little one

Tammyleigh - posted on 02/05/2010

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My daughter Angelina has been on Keppra since November of 2009. We also have experienced alot of mood swings and aggressiveness.It was because we were increasing her dosages so fast. She is not on any other type of anti-epileptic meds other then the Keppra.Our doctor had us put her on Vitamin b-6 to help with the mood swings and stuff.That seemed to help alot. Also does your daughter still have her tonsils & avnoids(sp off)? If yes, talk to an ENT(Ears,nose Throat) specialist about getting them out.We have noticed that since my daughter got hers out, her behavior has gotten 20 times better.



In the past she has been on Dilantin which almost killed her and phenobarb(allergic to), She has left menial temporal scerosis along with the epilepsy.

Sandy - posted on 02/04/2010

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Hi Kathie,
You are so welcome!! I promised Anthony that I would be there for you to talk to and help you in anyway that I can. I know it seems like you are in a tunnel and you can't see the light at the other end but I pray that it will get better. Keep the faith! Just keep giving the doctors suggestions and make your wishes known. You are Katie's advocate and you must stay strong and try anything and everything to stop her seizures. Look at me! I started Joey on a new drug tonight, Vimpat (Lacosamide) 50 mg. at nighttime. Yeppers, the side affects list is horrible but ... I am willing to try yet another drug. Anything to try and make Joey's life better, mine too!! Keep the Faith and I'm praying for all of you! ♥

Shameka - posted on 02/04/2010

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My son was on keppra at first and he started walking.. Had a siezure then topamaz he was not normal and still had another siezure. Now hes on depakote and they have been under control for about 4 months now... It is very scary when you dont know when they will have the next siezure. I will be happy when they can find the proper treatment for them......

Wendy - posted on 02/04/2010

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my sons- husband dr has told us that keppra can cauase mood swings. my son seams ok but my husband has moods swings

Vanessa - posted on 02/04/2010

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Sorry to hear about your daughter, but until the doctor finds the right medication for her it will be a rough ride. My son has been on Keppra for a while now and thank god it works for him but like you and many others I'v heard horror stories. Sounds to me that you're on the right track you reported the changes to his doctors and with God at her bed side things will get better. I know how you feel because I was once in your shoes and I promise you things will get better once she get the type of meds that works for her

Kathie - posted on 02/03/2010

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Thank you! Everyone. I wish you all luck. Since we are beginning to wean my daughter off the Keppra she doesn't appear to be as nasty as she was before. Fingers crossed the Lamictal is all sheneeds. I will keep you all in my prayers!

It is so nice to know I am not the only parent facing these issues. I just want my sweet little girl back..

Kelly - posted on 02/03/2010

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hi kathy ,my son also is 12 an he's on keppra he also takes eplim ,.we've got the mood swings ,also he seems aggresive he's started being rude and got into trouble at school it's also made his memory quite bad(which we were warned about) .. i know exactly how you feel sbout it being the scariest thing ever.think im gonna make some enqiries about the b6..wishing you all the luck .stay sane...:-).x

[deleted account]

My son recently started Keppra. I was told by his neurologist that mood swings can be a side effect. He said that adding Vitamin B6 would help counteract mood swings/behaviour problems if they develope. Perhaps you should check into. It might be all that is needed. Best of luck!

Heidi - posted on 02/01/2010

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My son was on Keppra for a few months. He was diagnosed with Absance seizures and has had a few Grand Mal. The Keppra did nothing for him at all. In fact in my opinion it made his seizures worse. He is currently taking Depakote and in the beginning it was awsome. He recently has started to have behavioral issues (Fighting at school, mouthing off and so on). He has always been such a swet caring kid. His dr. is weaning him down on his meds in hopes it will help with his issues without bringing the seizures back.

Kathie - posted on 02/01/2010

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Thank you Heather! I will get her some B6. Maybe the generic isn't too good for her. They doctor said he is hoping that she will only need the Lamictal.

Thank you again :)

Heather - posted on 02/01/2010

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Hi Kathy



My son, Jacob is 6. He's had seizures since he was about 6 mths old. He's on Keppra and Topamax which has been a great combo for him. Keppra does cause nasty mood swings. They seem to last about 2-3 weeks. Our saving grace has been Vitamin B6. Yup, a vitamin. Jacob's neuro prescribed is for him, 200mg 2x/day. it started to help within a few days!



The other thing, FYI, is that Keppra went generic w/in the past 6 mths, and a lot of kids have had issues with the generic form- it doesn't seem to be as effective as the brand name. We got the brand name again by having the dr write "brand name only, medically necessary" on the script. Hope this helps! The other thing our dr has us do when increasing is to increase the am dose for 1 wk, and then increase the pm dose so it's a little gentler.

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