Anyone on KEPPRA?

Holly - posted on 10/27/2008 ( 64 moms have responded )

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Hi All,

I'm new to the group and wanted to see if anyone is having luck with anti-seizure meds.

My son had his first seizure in June and after an MRI, they found a group of abnormal cells in his brain that are causing the seizures. We have had success controlling the seizures with KEPPRA. (We know it's working because we missed a dose in July while traveling and he had a seizure that night... so we try hard to not miss it anymore - that and the doc upped the dosage).

What I'm REALLY concerned about are the side effects. The most common effects can be depression and suicidal tendencies. It's really tough to ask a 2.5 year how they are feeling. And the doctors ask us if he's himself, does he have mood swings... well, yeah! He's 2 and a half.

He's recently had trouble sleeping, waking between 4 and 5 each day. And he is very temperamental at times.

Any advice? Have others tried KEPPRA or other meds with success or worries.

Thank you for sharing here.
holly (mom of Foster and William)

MOST HELPFUL POSTS

Angel - posted on 01/25/2013

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it took a few months for the keppra to work for my daughter. She is now 1 years old not sure if this helped you.

User - posted on 09/01/2013

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I'm am a 28 year old mother to a 3 and a half year old. She doesn't have epilepsy but alomost 2 yrs ago I had my first grand mal (at 26) and I was first put on keppra immediately but I was still having monthly GMs so we added clobozam (only 10 mg a day) and my seizures have completely stopped. Coming from an adult who knows how I feel normally, kepprage is definitely a huge side effect of keppra. I can give u all hope by telling u that the symptoms get Wayyy better after around 6 months-1 year. I have noticed a huge change in myself over the last year or so. I still have bouts where I will be sitting on my couch and my daughter is at daycare and no reason whatsoever to get angry but I can just start feeling my blood bubbling through my vains and shear anger just comes over me for absolutely no reason! It's not ur kids fault (which I know u all know) but just so u all know, it's even hard for a grown mother to stop the rage so my advice is leave them alone to have a 5-10 mins rant an then it subsides like a contraction during labour! So weird! I hope this helped at least one mama!

[deleted account]

Hi! My beautiful almost-5-year-old is on high dose of keppra. She is VERY good natured but on this high dose (1000mg twice a day) she started crying out of the blue. We started her on vitamin B6 and she's better! She also has great difficulty sleeping, which we attribute to lamictal, but is now doing much better on melatonin. Talk to your doctor about low-risk things that you can do to help with side-effects, but if it's working for seizures, it's a good medicine!

Esther - posted on 09/26/2013

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My 3yr old started back on keppra and has had trouble sleeping since then. Very restless at night and wakes up several times at night. B6 seemed to help with depression and aggression during the day.

Ashley - posted on 09/13/2013

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B6 is OTC. My son is on 50mg per tab 2x a day. I break it up into a powder with a meat tenderizer because he is 5 and can't swollow pills yet obviously. You can try it for a week or 2 and see if you see a difference in him. Good luck!

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Moriah - posted on 10/14/2013

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My 13 year old son was diagnosed at age 8 with epilepsy. We tried a lot of medications, but the 2 he does the best on are Lamictal and Zorantin. They make the Lamictal in a pill that dissolves on the tongue for younger children-mine was on it until he turned 11. He hasn't had any side effects from either one, thank goodness. He is in the middle of puberty, however, and that causes the temper and mood swings. He is also believed to be Autistic as well, so meds for that will have to work with the seizure meds. You might see if there is another low-dose med that he can take at night instead of or along with the Keppra to help with the sleeplessness. It could be that is the trigger for all the other things you are seeing. I hope this helped somewhat. Good Luck!!!

Amy - posted on 10/03/2013

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I have epilepsy, and take Keppra and Vimpat. I don't have any advice for you because I was an adult before I started having seizures, but wanted to let you know that there is a wonderful Facebook Epilepsy group. The link is posted. There are a lot of parents on there, and a lot of people talk about drugs and their side effects.

https://www.facebook.com/groups/epilepsymail/

Esther - posted on 09/23/2013

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my daughter had 2 seizures last year may then gradually got weaned off keppra. Recently had one at daycare and had to get diazepam. she is 3yrs and 3mths now and had to start her on vit b6 for all the depression and agression she was experiencing. She is better now.

Ashley - posted on 09/08/2013

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My son is 5 1/2 and was just diagnosed with generalized partial seizures this past July. They suspect he's had them since he's been 2 1/2-3 yrs old. He has them mostly at night or early morning between 5-7a.m. He currently is on Keppra and so far it's working. He is on vitamin B6 for the side effects and it's working. He started to become violent and mad for no reason, then extremely hyper the next minute. Since being on Vitamin B6 he's been calmer and less emotional. Hope this helps anyone whos child is on Keppra but lost if they have side effects; and don't want to switch medicines if Keppra is working. Try Vitamin B6 first. :)

CRYSTAL - posted on 09/07/2013

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my daughter is on keppra her behavorial problams have got so much worse she been on it i also dont think its realy working for her

Leslie - posted on 09/06/2013

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Hi-Im New here as well. I have a 10 y/o with Complex Partial Epilepsy. He has had seizures since he was an infant And was put on Tegretol AT age 2. By age 4, we had To switch To Keppra bc Tegretol was causing him To be very "doped up" And not good tonic clonic seizure control. Keppra was My son's miracle drug. He was able To functions like a normal hold rather than be semi sedated All The time. We have increased The Keppra periodically over The years as he grew, in response To The few break through seizures he has experienced. A couple months ago he had several seizures And had Keppra increased twice within a 2 week period. My normally Sweet, shy And sensitive Child turned into an absolute psycho. One minute he could be in a complete rage, The next crying And screaming for absolutely no reason for hours. He even attacked he AT The doctors office.
That being said, The Neuro felt this was a side effect of The Keppra. We are now in The process of dosing up Depakote And will begin dosing down The Keppra in a week Or so. I only just found out about B6 Or i would have tried that before switching meds. What does of B6 do i start with for a 10 year old? When i asked his mental Health doc they said just Go ahead And try it but did not give me a prescription.

Sarah - posted on 09/02/2013

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Hi, I just wanted to post that it took a massive dose of keppra (500 mg twice a day) before we really saw a drop in my 16 month old's seizures. She is on clobazam and keppra now and having about 1 seizure every 6 weeks ( down from about 6 seizures every 11 days). Hope this helps! Good luck.

Tanya - posted on 04/15/2013

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Hi! My son who is 13 was just diagnosed with jme. He started having seizures at age 6 and in the past 2 years has gran mal , absence and morning jerks. We are weaning from neurontin and started keppra. I swear I have not seen my son smile in the 3 wks since he started keppra. Should I let the neurontin completely out of his system before I can judge? Dos keppra get better once the body gets used to it? I did research that lamictal has little side effects. I did try lamictal 2 yrs ago and he only stayed on for 5 days because at the time I was not ok with stopping neurontin. Please help. My mind and heart are so heavy

Nancy - posted on 01/25/2013

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After too many seizures in a short time my six year is being weaned off of keppra. I wish it was the right drug for her but it isn't. We are now switching to Carbatrol. Anyone used that for your child?

Nancy - posted on 01/24/2013

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My daughter has been on Keppra for 5 weeks and is starting to have seizures ever couple days. She had two today and that has never happened before Keppra. She is six. What did they do for your son? I am losing hope in this drug.
Nancy A

Nancy - posted on 01/24/2013

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Thanks Michelle. It helps just to be in touch w another parent going through this. We are trying to stay positive and get to the right dose. It is so hard to watch your child have a seizure. Have you tried B6 like some suggested. We are starting that tomorrow morning.

Michelle - posted on 01/24/2013

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hi nancy, my daughter has been on keppra 4 about a year now and until she was on right dose she was having her seizures.
since starting keppra at the right mg for her she has stopped seizing but her behaviour has deteriated. she is 11 years old n on 750mg twice daily, her seizures has also changed she was generally awake when her seizures start now she has them whilst asleep. hope this helps i would see how u go with keppra at the right dose but look out for behaviour changes,
kind regards
michelle

Nancy - posted on 01/24/2013

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My daughter is 6 and has benign rolandic epilepsy. She has had three seizures since starting keppra. The docs says she isn't at the right dose yet but she never had three seizures this close together until now. She only had five before the meds and they were all at night after she was asleep for a short time. Now the last one was in the morning when she woke up. I am finding it hard to out faith in this drug. Any help would be appreciated.

Jenny - posted on 12/21/2012

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My daughter was not diagnosed until she was 12. I can't imagine what you are going through with such a young one with seizures. I was terrified when my daughter was diagnosed. She is an amazing 19 year old young woman now, still battling with her epilepsy. She has tried everything. We have been on Dilantin, Depakote, Ativan, Topirmate, Lamictal, Keppra, and today we just started Clobazam. She has been having drop seizures lately that we are trying to control. I can't speak for everyone, but we didn't start her on Keppra until she was 18 years old after we drained her of all meds she was on at one time. Keppra has agreed with her as a young woman and we have only had angry out bursts because epilepsy is hard to deal with in general. Being at such a young age and not understanding what's going on has got to be scary. My daughter describes it as constantly living in a fog. Take that into consideration when you are choosing a seizure med. You want one with the least side effects, but you also want the seizures to stop. I know its a hard decision to make. I pray that you and your family will find the right medication. Like I said, we have had good success with Keppra but she started it later in life. The first drug we tried when she was 12 was dilantin, but it put the weight on her fast. Depakote was the next drug we tried and it held the seizures for a while along with topirmate and lamictal together. It wasn't until last year that we had to finally take her off the depakote and start the keppra. We have had good results. My daughter has severe seizures though, she is on 2500 mg of Keppra along with 125mg of topirmate 100 mg of lamictal, 1 mg of ativan, and 5mg of clobazam. So far for today, no breakthroughs!!!!!! I'm praying this continues. Good Luck to you and your family.

Jenny

Michelle - posted on 12/15/2012

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hi my daughter is on keppra n it seems to work for her the only side effect for her is behaviour, shes become very angry, disrespectful, violent etc she is 12 and hadnt really thought it could b meds,

Celine Danielle - posted on 12/13/2012

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My 3 1/2 year old just starting getting seizures less than two weeks ago and has had a total of four seizures. She just got on Keppra and she has had some very obvious behavioral changes. Such as biting, hiting, more jargon, dizzy eyes, hyperness, she gets a little anxious at bedtime or when given sugar snacks (my weak husband gives in). Its unfortunate for our children but a struggle for us parents because for me, im a nervous wreck!!! I have recently given my life to Christ to find strength to deal w all of this. I am a first time mom to two toddlers and sometimes we go thru things as a family that are hard to deal with especially since I don't know what to do most of the time. Thank God for my laptop and my parents who give us a lot of advice. But they never had to deal with seizures. My daughter still had a seizure on Keppra but it was a light one and only lasted a few seconds, but it was still very scary!!!!!!!!!!!!!!!!!!!! Recently the neurologist put her on Topamate because he didnt like the behavioral changes, but she still has to take Keppra til she gets whened off of it. slowly. Initially she was going to have to b on keppra for 1 year but that might change. our little girl is different on the meds, but I'm hopeful that the meds will do their job. Is your boy jittery, even while asleep? My daughter is, its going to take awhile til we get used to this, i dont know if we ever will, but im hopeful. Faith I guess, that is her middle name, is what I have to keep reminding myself of. Im sorry I dont have advice for you. Im searching for advice myself. O and I had to withdraw her from school because shes so small and I was afraid for her safety in a classroom w more special needs children.

Monica - posted on 11/21/2012

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Any parent had any experiences with their child being on Topamax, Keppra and Lamictal (no seizure control with Meds) and trying the ketogenic diet?

Pennylyn - posted on 09/12/2012

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My 4 year old son had a status epilectic seizure almost 2 weeks ago so our neurologist put him on Keppra. I was a bit skeptical because of the known side effects but agreed to start him on it anyway. I started to get concerned because of his abnormal behavior but then he seemed to have adjusted as time went on. However, this morning he had a seizure...now I really feel lost & don't know how to help him. I started to use Frankincense oil on him because a friend of mine suggested it. It seems to have some calming effects... Do any of you have any experience with Frankincense oils or any suggestions on what I should do???



Penny, UT

S.K - posted on 01/13/2012

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oh yes! my 3 yr old is on it and has been on it for a year. I've noticed his mood/behavior was fine as long as I was giving him a high dose of vit D. Well, I had to go back to work after he had surgery and stopped giving it to him and now he is CRAZY....you can read the post of his "keppra rage" on his blog www.beatingepilepsy.blogspot.com...Anyways, I've started giving him high doses again and it has worked 75%. I've heard B6 works and our neuro told us to try it...but come to find out some kids can't tolerate high doses of B6....and Cole was one of them!

S.K - posted on 01/13/2012

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oh yes! my 3 yr old is on it and has been on it for a year. I've noticed his mood/behavior was fine as long as I was giving him a high dose of vit D. Well, I had to go back to work after he had surgery and stopped giving it to him and now he is CRAZY....you can read the post of his "keppra rage" on his blog www.beatingepilepsy.blogspot.com...Anyways, I've started giving him high doses again and it has worked 75%. I've heard B6 works and our neuro told us to try it...but come to find out some kids can't tolerate high doses of B6....and Cole was one of them!

User - posted on 01/08/2012

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Omg!! My nonverbal autistic son had his 1st grand mal seizure a week ago & he's 11. Started keppra last Tuesday! He was awake most of night last night & is having a hard time sleeping all the time!!! Calling neuro in a.m. I'm exhausted!!! & his behaviors got worse!!! He mentioned B6 at appt. if he has issues!!! So hard being a single parent to him & a 9 year old typical daughter who is also losing sleep because he has major meltdowns at night!!!! Help !!!!! Can't wait to talk to DR in a.m.& I work full time!!

Tammy - posted on 01/06/2009

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The crazy thing about all these seizure medications is that every person seems to have a different reaction to the medication. What works for one....may totally not do a thing for another. I have twin boys who are 12. Both of them have Epilepsy but Jake

is lucky and medications seem to work for him........unlike his brother .

Jake has been on Keppra for about two months. AT first he was high strung....couldnt sit still and constantly would get in trouble. After two weeks..... he finally calmed

down. Try not to stress on all the side effects of each drug...... If you do you will drive yourself nuts.......Trey is on several medications for seizures, behavior, asthma....cont.

Becky - posted on 01/06/2009

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My son is on Keppra for silent seizures and has done well...when you start reading the side effects of any medicine it can make that med sound horrible to give...so I stopped reading and started relying on my sons doctors to know what was best...we did try a switch of seizures meds a while back to Topamax...HUGE MISTAKE! went right back to Keppra and it's done wonders!



Watch your son, even though he can't tell you if he is sad, there are other clues in them that can tell you something else is up...

Michelle - posted on 01/05/2009

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Hi there!

Our 12 year old is on Keppra and has been now for nearly 5 years - IT"S FANASTIC... no side affects... working beautifully, reduced the seizures significantly. Yee Haa.

Alena - posted on 01/05/2009

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Hi, my son tried Keppra and it made him moody and brought on anxiety - to the point where I believe he had two anxiety attacks. Also, it made him feel like he was not in touch with reality and he cried at times from frustration. I think he had a touch of depression while on it. He is 9 years old and can tell me how he is feeling, so not much guessing there. Needless to say, I stuck with the med for awhile because most of the time those sypmtoms will go away. After about 6 weeks on it I asked for a change. We changed him to Trileptol and all those side effects went away. So far, thank God, he is doing really well emotionally and has not had a seizure since late September.



Good luck!

[deleted account]

Hello, I've just joined circle of moms. My name is Alison and I have a nine year old son Nicholas, who has West Syndrome epilepsey. We have just recently weaned him off Keppra. We have found it to be very successful in controlling his seizures and have had none of the side effects. He has been seizure free for almost two and a half years. Before Nicholas went on Keppra he was hyper, after being on it a little while it seemed to calm him and it didn't affect his sleep at all.

Kelsey - posted on 01/02/2009

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My 4 yr old just started Keppra last month and while the first few weeks were pretty tough (not sure if it was the meds or the holiday's though) she is now seeming to come out of her "nasty" stage. She is a lot more up beat and does not "lose it" every time we look at her. I have been really please thus far with the Keppra.

We made the decision to go with Keppra because we did not want to give her medication that would require monthly blood samples. I had seizures as a child and I to this day remember the terror I felt ever month going for the blood draw. I decided that if she had a bit of an "attitude" it would be worth it.

The sleeping thing can go either way, they either will sleep more or have trouble sleeping... we were fortunate to have the first one..... though the first 3 weeks she was waking up quite often, but it totally stopped around 4 weeks. The 4th week we had problems with bed wetting because she was sleeping so soundly, but we just used pull ups and didn't let her drink after 6pm and that stopped the bed wetting.

I guess you just have to take all the side effects your son is experiencing and decide what is tolerable and what you cannot live with.

I hope this helped a little bit... and good luck!

Christine - posted on 01/02/2009

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My son was on Keppra when he first started having seizures, at 8 mos. old. It didn't work for him, and really messed with his sleep. We added Topamax when he was 10 mos. old and that did the trick. We weaned him off the Keppra a couple of months after that.

Michele - posted on 01/02/2009

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Keppra is a wonder drug for my 5 year old also. She was put on it at age 4 after the Neuro wanted to try to wean her off of Trileptal (HUGE mistake). She has mostly tonic Clonics and ended up having a huge one.. About 6 months into the med she started these crying fits at night and literally stopped sleeping. I could get her to sleep maybe 3 hours a night. Yes the seizures stopped, but with no sleep the meds were useless because she started to have other types of seizures. 2 months ago we added Klonopin and it stopped the other seizures and is now helping her sleep.

My concern with Keppra is the side effects. Carlee is language impaired and also Autistic. She can not express her feelings like a typical 5 year old would.

Carlee was dx'd at 6 weeks old with Frontal Lobe Epilepsy. She has had only 1 gran mal while on Keppra verses 1 a week before... She did however keep having several Myoclonic a day.. That is why and when we added Klonopin. All seizures have stopped now for 1 month..

Margaret - posted on 01/02/2009

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Hi Holly, I'm also new to this group. I have a son who was diagnosed with seizures when he was 2 1/2. He is now 10. We first put him on lamictal but his coordination and balance wasn't very good so the doctor put him on keppra. The side effects aren't very good. He still has trouble sleeping. the good news is that he has not had a seizure in 1 1/2 years (knock on wood) and we are slowly lowering the meds. He just had a 48 hour eeg over the Thanksgiving weekend and although he did not have any seizures, it was abnormal. But the doctor did say and some kids go through life with abnormal eegs. So to help you alittle bit, we are not a fan of keppra or and other medication but if it helps with the seizures I guess my husband and I agreed to take the good with the bad.

Debbie Keefe - posted on 12/29/2008

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Hi, Im new to this group...my daughter was diagnosed with epilepsy about two years ago....she is 6 years old....it was trial and error with the meds, she is on lamictal. It great and she doesn't seem to be having any seizures...I was reading all the posts...i didn't realize there could be so many side effects from the meds. She is one of four kids and the only girl...could she be irritable from the meds? She whines alot!!!! Could just be a girl thing? I hope she outgrows her seizures....doc said by the time she turns 12 she has an 80% chance!!! Bye for now!

Rebecca - posted on 12/29/2008

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My daughter has generalized seizures (not one specific part of the brain affected). She was on Keppra for about 6 months, but then I insisted on a change because she was just nasty. She's 8 and would just hit/kick her sister or the dog for no reason, tell me she wants to punch me in the face, and scream about everything. She's on Topamax now and doing well.
Becky

Amber - posted on 12/29/2008

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As a side bonus, the Keppra long term has actually helped with ADHD issues too!

Amber - posted on 12/29/2008

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My daughter has had great success with Keppra, and yes she had serious mood swings while getting adjusted to new doses. It always went away shortly.

[deleted account]

Hi, I am also new to this group, but my 2 yos was on Kepra. He became very wild and angry. Our doctor said that it is a side affect of Kepra, but that not all children will experience it. He said that it is an unacceptable side affect and put him on Topomax. He has been almost seizure free on it with only a couple very small absence seizures and his mood immediately got back to normal. It was a very obvious change.

Kim - posted on 11/25/2008

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We tried Keppra on my 3 year old son who has tonic clonic seizures and absence seizures, and it worked for a brief time, but then the seizures started again and still continue today as we have not yet found any medicines that work for very long for him. We too were confused about the side effects because at the time he was 2 and what 2 year old doesn't have mood swings and tantrum-like behaviours.

Jayme - posted on 11/21/2008

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My daughter has never been on KEPPRA but we have had very good luck with Trileptal which is also a mood stabilizer i just learned.

Kira - posted on 11/19/2008

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Hello, I just saw this post. We tried adding Keppra to his pheobarbital and it did control seizures for a week, but then the behavior problems started and I couldn't handle my then 3 year old act like he was on a "roid rage" We switched to topamax which didn't seem to help at all, but we stayed on it hoping it would work. We finally added depakote into his routine and weaned him off the phenobarbital once he was off it the behavioral problems stopped. The thing I hate about topamax is he doesn't sweat and then he gets overheated and seizes.

Robin - posted on 11/19/2008

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My 6 year old was on Kepra this summer, and boy did it make her a different child. We had to take her off the meds. I have never seen anything like it before in my life. She normally had tantrums, but these would last for hours and she would throw things and herself on the floor. As soon as she stopped taking kepra things improved. Trileptal seems to be a better match for her. I can only imagine trying to figure this out with a 2 year old.

Kim - posted on 11/19/2008

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My 9 yo son is on Keppra and Lamictal. We tried Topamax with the Keppra, but it was EVIL!!! He couldn't finish a thought, sentence, conversation, and the anger fits were intensified. He still has the fits of anger -- he has not been himself at all since he started on all of these meds at age 7 1/2 -- but B6 definitely helps.



He is scheduled for surgery in January to receive a Vagus Nerve Stimulator to try to stop his seizures. His have no known cause or origin; he has no other neurological problems or delays. His dr. said the VNS therapy would help us come down off of the 2000 mgs of Keppra a day, as well as a lower dose (if any) of the Lamictal. We have really prayed about this and are hoping this will be the start of getting our son back. He used to be happy, joyful, fun-loving, playful -- now we call him Eeyore. It has affected our whole family, and while we are thankful to God for every trial, we are saddened and frustrated by how this has affected our sweet Zachary.



I'll post and let everyone know how the surgery goes. Maybe God will be able to use this site to help others, as well.



Kim Scruggs, TN

Dodie - posted on 11/16/2008

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My daughter takes Keppra. She is 11 and has had seizures since she was 9 months old. She has been taking Keppra for the last few years. I haven't seen any side effects with her.



I know exactly what you mean about the docs asking if your child is acting "normal". They asked me the same questions when she was just 1! In hind sight, I can now say she was delayed. Being that she was kid #4, I think the docs thought I should just know, but every kid goes through different phases at different times.



My daughter takes Keppra, Zonegran, Trileptal & Dilantin. The Dilantin (to me) definitely has the most side effects... but it seems to be that extra little umbrella to stop break-throughs. The other 3 are all fairly new meds with much lesser side effects and I really like what I see. My daughter took Phenobarb for 5 yrs & Depakote for 3 or 4. The newer stuff is much better!



Hope this helps...

~dodie~

Jen - posted on 11/15/2008

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My daughter was diagnosed with Epilepsy at 8 days old in February 2008. We started on phenobarbitol but the doctors said that was not good long term because of the developmental delays and sedative effect. Now she's on Topamax, Keppra and Lamictal. They are trying to reduce the Topamax and take that away but if the three meds are working her doc is good with that. She's had Complex Partial seizures, which progressed to Infantile Spasms and now Lennox Gestault. To get over the Infantile Spasms we also did high doses of prednisolone. She is generally a happy baby when she is not having too many seizures a day to count and she has always been a good sleeper. The meds help that and I understand that is a necessity in her life. I have been trying alternative medicine and started cranio sacral therapy. One hour after her first treatment she smiled for the first time in 6 weeks and then 2 hours later her activity level jumped tremendously. She sees the chiropractor and I'm looking into acupuncture. We have also tried the Ketogenic Diet with no success. She was only one of two kids in five years time that reacted the way she did. She ended up in the hospital for 12 days, lost 10% of her body weight, was hypoglycemic and basically semi-comatose. They now think she has a metabolic disorder that influences her epilepsy. We are still going for tests to figure that last part out.

Tonya - posted on 11/14/2008

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My son is on Keppra & Depakote. He has been doing really well with the medicine. I can always tell when it is time to up the dose again. When they are under control he has one or two a day. If his medicine is needing adjusted he will have up to 15 a day. So I really think the medicine is helping him. My son is 3 and can't talk so it is hard to tell what they are thinking. He does get moody! Whether that is because of the meds or just being a toddler is hard to tell. I really feel that the good from the meds does outweigh the bad.



Tonya

[deleted account]

My daughter (10) is on Keppra and Lamictal (recently switched to lamotrigine-generic). She definitely has mood swings, but does not have trouble sleeping. The lamotrigine/Lamictal helps her the most, but adding the Keppra seemed to get us over the hump so that we don't notice breakthrough seizures anymore. Her EEGs are still showing seizure activity as often as every minute, though and she is severely delayed academically.

Suzanne - posted on 11/13/2008

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Hi Holly, I'm new to the group and my daughter, 3 years old, was diagnosed with Epilepsy in April 2008 and put on Keppra. So far so good! She hasn't had a seizure and I am comfortable with her dosage of 2 ml in the a.m. and 3 ml in the evening. Her sleep pattern is fine, 2 hour nap in the afternoon and 10 hours at night. She does get very "cranky" at times but I don't know if I should attribute that to the Keppra or just normal 3 year old behavior.

Shari - posted on 11/07/2008

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We have a 14yr. old that was on Keppra. It was not a good. Her moods would go up and down. We have tried a lot of meds. The one that she is on now seems to do well. I remember the doctor said that sometimes that might have to try different ones to get the right one. She is on Lyrica. It is a new drug that is on the market. It has worked very well for her. There is another on topamax. That one did good for about a year with our daughter. Then she just started going backwards. She forgot things that we knew she could do. Hang in there. It took us awhile to find the right one. Just be open with your childs neurologist.

Tracey - posted on 11/07/2008

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We were advised to put our son on Keppra when he was 2 and we chose not to because of the side effects. We chose to change his diet and use chiropractics to reduce the number of seizures. Our son has constant seizures, many of which you would not be able to see except on an EEG. The chiropractor adjusts him every week and this seems to help. We are hoping that he grows out of it, we have not seen any increase in the number or scale.

Christina - posted on 11/07/2008

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Hi Holly,

I just stumbled across this posting. I read through the others and saw that nobody mentioned B6. My son became increasingly restless and also had major sleep issues on Keppra. I read on the yahoo boards about adding Vitamin B6 to his diet which helps to counteract these side-effects (even if you are not B6 deficient). I was skeptical and I think our neurologist only prescribed it to humor me but we saw a WORLD OF DIFFERENCE!!! You need to ask your dr. to prescribe it so that you get the right dose but its relatively cheap and easy to crush and put in a drink. I don't think we'd have kept him on it otherwise.

As a side note, my little guy is also 2.5. Keppra never worked for us by itself but when we added other meds and then tried to come off the Keppra the myoclonic seizures came back. So we are still on it along with Topomax and now the Ketogenic Diet. I know what you mean about the mood swings....its so hard to know if its the seizures, the meds or just the normal being 2!! I've found that just trsting my gut is the best way to go. Hang in there! Christina, mommy to Leo

Gina - posted on 11/06/2008

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my daughter was on Keppra for a short time she is 10 yrs old and i did NOT like it at all it made her have bad temper fits. She is now on tranxene 3.75mg. a day and 200mg of Lamictal 2xs a day. She is doing good now.

Holly - posted on 11/04/2008

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Wow, thank you all for your posts. I really appreciate you sharing with the group.

We spoke with the doctor last week about B6 and Omega 3 fish oils and she agreed we should try these supplements. The best thing is knowing that Keppra is controlling the seizures. I hopeful we can work on controlling the side effects, which in comparison are not that bad. I just hope he isn't feeling depressed. For the most part, he's a happy almost 3 year old.

So thanks again. Great to be part of the group.

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