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nytasha

Depakote, Behaviors, and personality

My 7 year old daughter was diagnosed with Epilepsy a year ago this coming April.  She has been on Depakote since the beginning.  It seems to be doing very well at controlling the seizures, but she has become a whole different child.  It breaks my heart, and every day seems to get a little bit worse.  She is regressing academicaly, socially, and emotionally.  Her neuro seems to think it is all "behavior issues".  He doesn't want to change the meds but has mentioned it a couple of times.  He seems to think she will be like this no matter what we put her on.  I want my little girl back.  Anybody else struggling with this?

Comments

Re: Depakote, Behaviors, and personality

Hi nytasha,

The difference we have is I am adult with a 20 year history of seizures. Our problem is the same though regarding the personality change. I have never had good results for seizure control until now. The problems are horrible, themed started Sept. 3,'07, since i have gained a lot of weight, I have constantly regressing,"I do not care", I just want to sleep to pass life, I am not social at all, I honestly have no desire to speak to anyone, etc; I have the same problem with my Dr.,"she does not want to stop meds. I think it is their proclaim to victory so you beware. I hope this helps.

Re: Depakote, Behaviors, and personality

Hi Nytasha. I don't know why doctors don't tell people about this, it is irresponsible to give people medication and not tell them the full effects. I'm an adult with epilepsy and have been on a variety of meds. Each have had an effect on my personality. Some made me angry and hostile others made me cry. Currently, I'm simply detached. Emotionless. I'm sorry about your daughter. All I can say is WATCH HER. If she is becoming less herself, you may not want to continue this medication. Be somewhat wary of doctors thinking they know everything. You're the Mom and if your gut tells you something isn't right-LISTEN. You know your child better than any doctor !!!!  Melissa D

Re: Depakote, Behaviors, and personality

I know what you mean.  The doctors don't even aknowledge that this is even a possibility.  He argues with me when I tell him that I think this might be what is going on.  He thinks she is doing great, the thirty seconds that he sees her.  I was starting to think I was the crazy one, until I got online and saw other people have had the same problems.  What scares me is that it isn't just Depakote, will I ever have my little girl back?  Thanks for your help!

Re: Depakote, Behaviors, and personality

I got on Depakote when I was 11.  It's hard to tell if it changed my behavior.  I was a preteen and was very shy. 

The Depakote made me insanely tired.  When I got off of it at 15, it felt like I was waking up for the first time in four years.

My seizures came back, and they put me back on Depakote.  Now I'm in college and being on Depakote I had to drop three classes because I was so tired.  Now I've switched to Lamictal which does not make me tired at all.  It has side effects too of course.  But I'm not tired all the time anymore.

Talking with her doctor would be a good idea.  If you don't like what the medication is doing to her, you can see if any other medication works.  Everybody reacts differently to them.

Re: Depakote, Behaviors, and personality

I'm just wondering a few things, if anyone would care to respond.  There has been talk about switching me to Depakote, and I'm truly nervous after reading these postings!  My biggest problems with side effects have been migraine (already a problem since seizures) and personality changes (very hostile, sometimes I feel like I'm going crazy).  Has anyone had a positive experience with this drug??  And Dragool, you mentioned switching to Lamictal and its side effects - may I ask what you are experiencing?  I've read that can be helpful for my type of E and would be willing to try it (I think).  Thanks!

Re: Depakote, Behaviors, and personality

With Lamictal, I've been experiencing loads of rashes.  They turn into huge welts.  I got onto Lamictal Jan. 07 and now I hardly ever get the rashes and when I do, they're not that bad at all anymore.  It just took my body a while to get used to them.  The other side effect I get is twitches.  They occur in my arms, legs, torso even my neck sometimes.  My neuro said they were just from stress, but I am on anti-anxiety/depressants and I had never had "stressful twitches" before in my life.  I keep thinking they're myoclonic seizures and now my neuro finally believes me.  They're like muscle contractions.  You don't know when they're coming and of course you can't stop them.  They're usually pretty minor, but sometimes they make me jump.  Once, I was lying on my side watching TV and my entire torso contracted and my body ended up jumping back about a foot.  I'm going to talk to my other neuro in a couple weeks (I'm ridiculously excited for this!).

Overall, I'm much happier with Lamictal because I am not tired at all.  The doctors prescribed me 1000mg/day of Depakote at first and that overdosed me.  I would sleep all day except when I had to get up to eat or go to classes.  They reduced me to 500mg/day but I still had to take naps every day.  I am really pleased with Lamictal, I just still have a few kinks to work out with it.

Re: Depakote, Behaviors, and personality

I've heard about the potential for rash with Lamictal, but still good to know.  Thanks a lot for the info!  It sounds like it's working well for you...and I hope the appointment with your other doc goes well.  I just went for my 3rd consult in a couple of years - always trying to find the magic bullet (which doesn't exist).  I also have to nap most days, no matter what meds I'm on.  As to your twitches, they sure sound like myocolonic seizures, which I have ALL the time.  Klonopin has helped that a lot - at least for me.  Thanks again for sharing your information.

Re: Depakote, Behaviors, and personality

Sophie, I have been on Depakote for 20 years with minimal to no side effects. I did change medications before and during my pregnancy to Lamictal but I did have several seizures while I was on Lamictal and following the birth of my twins my doctor switched me back to Depakote ER (500 MG/day). Again no major side effects. No mood changes, weight gain. The only thing I really experience is being a little tired, but I don't directly relate that to the meds. Every person has a different reaction to medicine so the only thing you can do it try and if it doesn't work or you have side effects then ask your doctor to change you. Hope this helps.

Re: Depakote, Behaviors, and personality

My son had a major personality change on Lamictal.  With each dose increase he became increasingly aggressive and angry...not like himself at all.  I continued to call his Neurologist's office and their reply was always the same "Well, that's not typical of Lamictal. Lets get him to therapeutic level and see what happens."  So we kept waiting, and increasing, and my son kept getting worse.  After some terrifying events, my son ended up in the hospital "detoxing" from the lamictal.  It was the hardest thing we've ever been through...and all along the Neurologists continued to say "It wasn't the Lamictal"!  Even as my son got better with each day he was off the med!  Oh, I could go on and on with our nightmare, but what I learned was this...

Every person reacts differently to every drug...period...whether it's "typical" or not.  You know your daughter best and if your Neurologist is not listening to you, then find another one.  It took a couple of tries before we found a Neurologist who really listened to us, and didn't want to just put our son in a "box" with everyone else.  

It's a very difficult and scary time, but you just have to keep moving forward.  My son is now on Topamax and is his old sweet, sensitive, funny self...but it took quite a while to get back to this point!  It breaks my heart to read your words because I've been there...but you will get through it!

One more thing, we did find a very good counselor for our son to help him with everything he had been through, and it has been such a blessing for him, and for us!  Our son is 12 and his counselor continues to help him deal with having E as well as other things, so that may be a possibilty too.  Go with your gut!

Re: Depakote, Behaviors, and personality

I am 20 and I am on Lamictal, Tegratol and Epilim (the Australian version of Depakote) and I experience mild depression, memory loss, exhaustion and loss of concentration and motivation.  I have been seisure free for almost a year now but have recently decided that i cannot live like this any longer and I am going to try and lower/change my medication.  I am scared to death about having more seisures but it's something I need to do for my future.

Re: Depakote, Behaviors, and personality

nytasha,

When I started High School (I graduated in 2000) I was on depakote. It was horrible. I was getting failing grades. My parents thought it was because I was haning out with the "bad" crowd... so much so they sent me to a private catholic school (a 35 mile commute).

I was so frustrated because I was a smart kid. I did 3rd grade math and english in the second grade. I skipped 5th grade and now I didnt know what was happening. So junior year (what I knew colleges looked at) I just stopped taking my meds. And suddenly I passed all my classes with A's!

I came clean and told my parents and doctor that I wanted off the medication so I could get into college. They agreed, and I was fine for a while.

 Basically Depakoe made me stupid, couldnt concentrate, I forgot what someone told me 5 seconds after they said it, and I gained 60+ pounds (that I lost the moment I stopped the meds).

 Hope this helps.

Re: Depakote, Behaviors, and personality

Hey sigep1982,
Thanks for posting that! I was failing a bunch of classes in college and am happy to know that it was the Depakote that did it to me and not myself. I'm now off of Depakote and am much happier and passing all of my classes!
Thanks so much for sharing your experiences.
Lindsay

Re: Depakote, Behaviors, and personality

Reading these forums always helps me.

I have been diagnosed with TLE for about a year now and have been a slew of medicines. I was just put on Depakote about a month ago. I have felt like crap since the moment I started taking it. I gained 10 pounds (even though I had the stomach flu so bad for two weeks this month and could only drink tea and eat soup) have been moody as all get out and can hardly control my emotions. I can't wait to talk to my neuro and let him know what the heck is going on with me. I have an appoinment this week. I am lucky and got a good doc on the first try and he actually listens and lets me have a say when it comes to meds and what we think is best together.

 Doctors need to know that it is our bodies...we know them best.

 

I recently had a bad seizure and scare and had to be rushed to the ER. My neuro couldn't be reached and this on call doc treated me like a drug adict. I wanted to choke him...why do some docs act as though we chose epilepsy? Like we wanted this for ourselves?  

 Doctors...

Re: Depakote, Behaviors, and personality

I came to this website tonight to see if I could find some answers myself on Depakote, my 7 year old daughter just started on this medicine in October and like you we don't even know her anymore.  She usually is the sweetest most considerate little girl, since she has been on the Depakote she is short tempered, hostile, sad, and defiant. I have just started to notice the lack in concentration with her work as well as lack of attention to detail(not her at all!). We too want our little girl back.  We are to a point that I was deciding to call the Neurologist tomorrow and take her off the medication, now I know I am going to do it.

Re: Depakote, Behaviors, and personality

Good luck and let me know what you find out.  My daughter had another seizure today, we think due to lack of sleep from her first sleepover, but her neuro won't listen to what I think about any of it.  I swear he thinks I am a crazy mom and don't know my little girl at all.  We are in the process of looking for a new Neurologist.

Re: Depakote, Behaviors, and personality

I've heard of many people on this website getting frustrated with their neurologists. I, too, am one of them. Looking for a new neuro is an excellent idea. I just don't understand why some neurologists don't listen to their patients and the patient's families. They learn everything from books, but they should really take the time to learn from the patients themselves. And not just say "Well, that shouldn't be happening because according to this book, Depakote doesn't do that...This is the best drug you can be on." Just because the patients symptoms don't line up with other studies doesn't mean that they're not real.

Re: Depakote, Behaviors, and personality

Exactly!  He keeps telling me that it probably won't matter what med we put her on, she will still have side effects.  I realize it is a risk, but it is a risk worth taking to me.  She can't live the rest of her life this way, she has a whole life ahead of her yet.

Re: Depakote, Behaviors, and personality

I, like many others on here, have epilepsy my entire life and have been on depakote for over 10 years.  It has taken care of my epilepsy issues but according to many it has effected me socially and academically.  I don't know if I totally agree but I do know my mother strongly believed it to the point she still feels I should change medications.  I will agree with a constant shake which is very embarrising in social situations and I never studdered until after taking it.  As for academics they fell from As to Bs and the occasional C which is probably my fault for not studying as much.  I've been told that since taking the pill I have changed from being more carefree to irratible and arguementative.  If these are truths I am not one to say.  I do know I am not very good in social situations which was never a problem as a kid but people change when they grow up so I can't strictly blame the medicine.  If this helps anyone with children in addressing what their child will be like as they grow up I am glad I could help.  I went through many pills as a child and none of which worked like depakote has.  My biggest problem personally is the shaking as I am percieved by many as a jittery or nervous person.  Also, to add I am not a soda or coffee drinker and very rarely drink alcohal.

Re: Depakote, Behaviors, and personality

Absolutely!  When we first started down this road, we didn't question our Neurologist, because quite frankly, we had no idea what questions to ask!  We knew nothing about this new world we had just entered!  In the last two years we have learned (the hard way!) to trust our instincts.  We refused to believe that it was our son and not the medicine!  Everything pointed to the medicine, but it wasn't "typical", so the Neurologists (yes, more then one) said it was our son and he would mostl likely be this way forever! We kept pushing, kept changing Neurologists... We felt so alone, and even questioned ourselves at times, but we finally found a Neurologist (A young one, relatively) who listened to us, and believed us!  We got our son back!  Don't give up!  Trust your instincts!  You know your child!  God Bless!  Val

Re: Depakote, Behaviors, and personality

My son was diagnosed with epilepsy at around 3 years of age.  We went through a few meds and "med hell." I finally got a new med, at that time, Zonegran with Depakote and that got my son fairly seizure free for a few years, with one or two break through seizures.  Since he has Aspergers' also, his behaviors were never typical and I learned to accept my son for who he is and what his take is on the world.  Believe me, this has been a challenging road but it has taught me so much.  Now that he is 14, his seizures have kicked in again.  He had been on Depakote and we slowly increased the amount with each seizure. He has Grand-mal.  This last year I saw my son become a hostile, depressed, angry at me for everything  kid.  He doesn't care  about school, learning and his life in general..I got a new neurologist and have started slowly going on Lamictal and have seen some good and bad changes...We are still going up on the Lamictal...You have to watch for the rash.. But my son FINALLY realizes his triggers, not enough sleep and irregular sleep patterns have caused his seizures...And I am determined to get my son seizure free....Good luck !!!

 

Re: Depakote, Behaviors, and personality

I too came to this website in the search for some answers.    My son is 8 years old and began having seizures in April 2007.  They did an MRI of the brain and an EEG and everything came back normal.  They have had him on Depakote since then and he still has had some sporadic seizures.  He too has become a little boy that I don't know.  Very short tempered, very angry and defiant.  From the time that he has been on this medication he has had a lack of concentration with his school work and his grades have gone downhill to the point that his teacher wants to hold him back in 3rd grade.  I can honestly say I am not thrilled with our neurologist who is part of a Neurology Department at our local hospital.   I have expressed my concern that his seizures may be due to an allergy, believe it or not spaghetti/pizza sauce.  He has had sauce on every day that he has had a seizure.  She basically shrugs me off and tells me that food allergies cannot cause seizures and basically increases his Depakote and sends us away.  She has no bedside manner and my husband and I leave there with no answers and with no hope.  We also have 3 year old twins and at first thought my son's behavior was out of jealousy for them.  Now from what I am reading here I see that his behavior may actually be due to this crazy medication.   I will be contacting my pediatrician to get a referral to a neurologist who will consult with an allergist and then possibly get him off this medication.  Any further information and support you may have would be appreciated.

Re: Depakote, Behaviors, and personality

Wow!  We are going through this right now.  Our son is a totally different person since starting meds for seizures.  He snaps back and forth with moods and at times seems like he loses touch with reality.  He hallucinates and goes into fits of tears or rage.  We are frustrated and don't know what to do.  We were told to take him in for an evaluation since it is "behavioral" not the meds.  He has been on Topamax and now Depakote.  I found an alert from the FDA dated January 31, 2008 concerning these meds that it can cause suicidal behaviors--especially in epileptics:

http://www.fda.gov/cder/drug/infopage/antiepileptics/default.htm

Re: Depakote, Behaviors, and personality

If you believe it's the medicine, don't give up! 

One other thing we learned the hard way... Don't have your child's medical records sent directly from your current Neurologist to your new Neurologist.  Have them sent to you, then you send them on to the new Neurologist, after you've gone through each and every page... Here's why...

When we finally had the records sent to us, we realized why every Neurologist was telling us the SAME THING, without really spending the time with our son... They would read the medical records, which included the first Neurologist's opinion... Once they read that, that's the opinion they went with.  Period.  We couldn't BELIEVE some of the information we were reading in our son's records!  Things that were NOT correct!  I went through each and every page and made notations (with back-up) regarding each incorrect statement.  I also included a cover letter, explaining our past experiences, etc...  Once we did this, we found our Neurologist, and got our son back!!!

Good Luck!  There is hope!  God Bless, Val

Re: Depakote, Behaviors, and personality

You're story broke my heart.  I went through that experience with my son when he was 4.  After he began taking the depakote, we watched our son slowly slip away from us.  He went from a happy child to a sullen, angry and defiant boy who was in the principals office his second week of Pre-K.  The light that was in his eyes disappeared and he was lethargic and moody.  I told the Neuro he was having a reaction to the medicine but he insisted that the seizures where to blame for the mood changes and the tremors in his hands and the Doctor increased the meds.  At times he was shaking so bad, he couldn't feed himself.  He was withdrawn and had no friends.  I cried thinking that this is where he was going to be.  Fortunately, after talking to many people, I found an epileptologist in Houston and he immediately took him off the Depakote and put him on a new medication.  I kept him home for two days to see if he had any seizure activity before sending him back to school.  Within a day, I could see our happy boy returning.  His eyes shinned and I heard him singing in his room, then I realized that my happy little boy had stopped singing when he was on the Depakote.  I knew then that we had made the right choice for him.  I proudly took him back to school and the teacher couldn't believe the change in his behaviour. 

He is now 7 and is a very happy, little boy who enjoys playing sports and is very popular with the other children.

If you feel there is a reaction with the medication, you must bring it up with your doctor and get a second (or third) opinion.

Good luck.  I hope that everything works out well for your daughter.

 

Re: Depakote, Behaviors, and personality

cocoho:

 This is the first time that I have replied on this site.  I am so happy for you that your son is happy and enjoying life.  It is wonderful news to hear!  What drug did your neuro in Houston put him on after being on Depakote.  What is his drug cocktail now and how is he doing?

I have a 12 year old daughter who started having night seizures when she was 7.  We have tried almost all the meds and combos.  Nothing is really helping and we miss the daughter that we once had.  Please help!!!

Re: Depakote, Behaviors, and personality

I was put on Depakote at 28, when I hit 30 I began suffering from anxiety and depression. I have gained a lot of weight. I have tried suicide several times. Now I am considerd Bipolar. I feel the Depakote has turned me into the person I am today. To bad the doctors say it is a mood stabilizer also. They never listened to my opinion. I am not the person I used to be. Some one who was able to fix problems instead of lying in bed doing nothing. Sometimes I am very tired and at night my mind spins with worry. Maybe if I was my old self I would be happy again. 

Re: Depakote, Behaviors, and personality

My son went through the same thing.  He was on Depakote from April until this August.  In those few months, we saw a horrible change.  As with you, the neuro told us it was just behavioral.  I told him that there was no way.  He also started developing temors in his hands.  Again, they tried to tell us it wasn't the medication.  He is now on Topamax.  The behaviors have changed, but now he is experiencing new seizure activity.  He was diagnosed with Atonic Seizures, but on his first day of Pre-K, he had two Absence seizures.  Now the neuro is telling us that it was just the med levels that were off.  They don't want to see him again until next year.  I have a feeling we are going to switch neuros.  Good luck with your daughter.  Remember, no matter what, they don't know your child.  If you think something is wrong, fight for your child.  Ultimately, you know what your child needs.

Re: Depakote, Behaviors, and personality

Thanks for all the comments. New to this site/forum. Our 15 yr old daughter diagnosed with JME about 1 1/2 or 2 years ago. My wife have started to become very concerned at the depression, anxiety and anger showing up. My wife said that the mood alteration started about the time our girl started Depakote. I pooh-poohed that but starting looking for answers. We're going to find the second/third opinion. Her regular neuro seems to be a decent enough person but operates on tape, as in he talks, we listen and trying to get a question in is difficult.

FYI: I work in with special needs preschool children, including one on one with autistic children. In my classroom I have two co-workers, mothers, with special needs children, both of whom have been students in my classroom (I'm an "instructional paraprofessional" but am Teacher for our summer sessions). One child has an extremely rare genetic disorder. Fragile bones, stunted fingers, toes, big head; normal intelligence and above normal love-ability; life expectancy of about 15 or 16 I think. The other co-worker's child has another genetic disorder; no speech or language; wears hearing aids and while he was in our classroom (before his mom worked there) he required an adult to stay within 3 feet of him at all times. Literally. Because of his aggressive behaviors. Very very difficult child to deal with. For 4 hours a day - in contrast to his mom, 24/7.

 My wife called me at work when she had learned about the MRI and the diagnosis for our daughter. There was a pregnant pause on the phone; I imagined the worst, a brain tumor or.... Hearing that our daughter had epilespy left me feeling distraught, stricken. I began telling my 2 co-workers the news and, while they were sympathetic, I was able to see the perspective they brought to my child's 'disability.'

 Perspective is good but still one hurts and worries. Sometimes a lot.

Re: Depakote, Behaviors, and personality

I am new here but maybe something I say will be of interest, the messages here seem to be somewhat mixed as to the topic so I'll throw this out.  I am 40 years old, BP II, I have a 7 1/2 year old daughter who had her first tonic-clonic seizure about two months ago.  I am trying to demonstrate a connection between childhood epilepsy and Bipolar behavior as well as provide a short analysis of my drug regime, my daughter's drug regime, and their respective efficacy - hopefully someone might see a connection between my experience and what they observe in their child (my thought being that I am better able to analyze the effect of a drug than a child).

I have been treated pretty successfully with a combination of Klonopin, Depakote, Welbutrin and Lamictal for the last 5 years.  I still have issues from time to time but compared to my pre-diagnosis behavior these medications have worked wonders.  With respect to Depakote, when I first started taking it I had a few experiences where I consumed huge amounts of food in one sitting - I am not a big eater so after a couple experiences I recognized what was happening and I have learned to stop eating when I know intellectually that I have eaten a normal portion.  A cognitive solution, but it works. 

A very interesting observation about Depakote - I used to engage in self-mutilation when I got extremely distressed (I would cut my wrists with razors - I have always thought that the physical pain overrode my mental pain and caused me to "revert" to normal thinking).  Anyway, when I started taking Depakote I "lost" my "ability" to self-mutilate.  I simply lost the desire as well as the ability to do it (I'm glad).  Very strange - Depakote targeted that specific behavior and eliminated it.  It makes me wonder what else it does to others if it did that to me.  Tying this in to the topic about Depakote affecting behavior, based on my adult experience it is obvious that it can have very specific behavioral impacts.  My rambling point is that as an intelligent adult I can identify a specific behavior as well as the drug which eliminated it - if it did that to me, it certainly seems to me that it could cause behavioral changes in others such as children.  This is probably my most on-point observation - If my child started taking Depakote and I observed behavioral changes I would have no doubt that they were caused by the Depakote because as you can see it can have very strange behavioral impacts.

Lamictal seems to be the most effective drug in my "cocktail."  I do get mild rashes sometimes.  Most interesting side effect is that when my dosage was pushed up I became very angry - I was easily provoked into abnormally aggressive behavior.  This started within a week of my dosage being upped and stopped just as rapidly when it was decreased.  My conclusion is the same as with Depakote - Lamictal can be effective but it can also cause behavioral issues - the key with me seems to be dosage level, as to others I don't know.

Klonopin is effective for making me sleep - my BP definitely gets worse when I don't get enough sleep.

I have no idea what the Welbutrin does, but it does have an "addictive" component in that when I take it too late in the day I get agitated.  This is the only med that affects me when I miss a dose.  As a side note, the name brand seems to work better than the generic - the generic seems to "wash out" of my system faster, something which I have confirmed via some research (generic isn't as good at maintaining constant level in blood).

Okay now I'll try to tie this together with my daughter.  Although "they" don't really understand BP, the drugs that are used to treat it (depakote, klonopin, lamictal in my case) all happen to be anti-epileptic medications.  In other words, BP is effectively a continuous seizure which results in abnormal behavior rather than physical seizures.  Combine this with my daughter having physical seizures and the genetic connection seems pretty obvious to me.  I have BP - she has seizures.  Any parents out there with BP and a child with seizures might want to think about this point - it might allow you to have a first-hand understanding of how medications can impact behavior in both you and your child.

After my daughter's first seizure the doctor prescribed Keppra.  She was seizure free while on Keppra (for a short time, admittedly) but when we tried to titrate her off of it she had another tonic-clonic seizure immediately.  We ramped her back up and she hasn't had an issue since then, but she does have seizures which affect her ability to speak, generally they last about 30-45 seconds.  I didn't believe her at first until I started reading up on the topic, now I have no doubt.  Lesson learned by me - I listen to my child now.

To conclude the story, it seems that the Keppra is working.  I have no intention of allowing her to be put on Depakote.  Maybe those of you whose children are having problems on Depakote might ask your doctor about Keppra.  I am not a doctor so this is a total shot in the dark.  For adults, look at my experiences and draw from them what you will.  It is clear that Depakote targeted an extremely specific behavior at the very least, as well as doing something to my ability to feel "full" when eating - I solved that problem by forcing myself to stop eating as much even though I still feel hungry sometimes, it has helped me keep the "Depakote weight" off.  If it does these things to me, what has it done to you?  What does it do to your child?  As to Lamictal, I have the sense that it is the most effective drug in my BP cocktail, but only when given at a specific dosage - when raised by a very slight amount it created rage inside me which I immediately recognized as abnormal behavior.

Sorry for the rambling semi-on-topic story.  Hope it helps someone trying to understand or solve medication issues with themselves and/or their child.  I don't think we have to live with medications which alter the behavior of our child - I think the medication can be changed or the dosage level adjusted.  Unfortunately the solution seems to be akin to throwing darts at a dartboard.  My heart goes out to all of you who have yet to hit the target, but don't give up hope.

PS:  It took me years to find a doctor who finally found an effective drug cocktail.  If you don't think your doctor is solving the issue, get another opinion. 

Re: Depakote, Behaviors, and personality

   Hi,

 I have an 8 year old who was diagnosed with epelepsy last spring, We had no idea she had epilepsy,  She was always a verry smart child, walked early talked early she is in 3rd grade now and doing algebra, The thing is she has always had a violent temper, one minute she would seem to be this angel, then snap, she would throw fits for hours,literelly, hit, scream throw things, Of course we figured she was not  being disaplined enought, As soon as she had her first grand mall seizure, they put her on depakote, I have never seen my daughter so happy,and anger free, she no longer has her "fits " as we called them, she will still get mad but i notice that now she can control herself, I have always wondered, since the drug is used for people with bi-polar if mabey my daugher has it, bi-polar runs in my family and dozens of relatives have it. My aunt has Bi-polar,and she also had epilepsy when she was younger but she has grown out of it and hasnt had a seizure in over 27 some years.  So do you think that mabey the depakote,is what helped my daughters behavior? Also, makes me wonder if bipolar and epilepsy could be connected, and if it is does it mean either myself or her father has to have if she does??                  

Re: Depakote, Behaviors, and personality

I enjoyed your narrative. Just to add confusion Keppra was a nightmare for my son, then 8 who had such an extreme personality and mood disorder on it even my neurologist claimed she told the drug rep that the advertising on the product probably understated the case that it can cause some mood issues, but I know people who find it effective and minimal side effects, so it does seem that medication choice is truly individual, and not always easy to find the right one. I was greatly releived when his mood, personality returned to normal as soon as he was off keppra.

Re: Depakote, Behaviors, and personality

Depakote is dangerous. We had 2 go arounds on it, and I can say with 100% conviction that it caused major behavior changes in my child. The doctors all agree with me now. Read on. Let my son and his 2 times on it be proof enough for all of you.

 
Depakote does cause major mood and personality changes. My son had been on it; I reported the severe change in who he was to the neurologist. He had extreme aggressive outbursts, became very angry and agitated, was unreasonable, defiant beyond belief, and just unhappy. He commented all of the time that he had no friends and that he was a bad boy. I convinced the doc to get him off of the Depakote, and my son returned to normal.

After a few weeks of being on the new drug and having clusters of seizures that landed him in the ER, he was put back on the Depakote. Nobody believed me that his behaviors were from the Depakote and that to put him back on it was abad idea. They all said it was behavioral and emotional problems and that he needed firmer discipline.

Well, they started the second go around of the Depakote and he was worse than ever. The neurologist and all of the other docs finally agreed that the Depakote was basically poisoning my child. They immediately put him back in the hospital and stopped it cold turkey. It has now been one week that he has been off of Depakote, and my sweet happy go lucky - with just the right amount of mischief - child is back.

Don't give up - this drug is a mood stabilizer, but in some people has the opposite affect. We went through hell over the last 8 months, and my little guy suffered unecessarily. You know your child...if you see these symptoms that are extreme and new, get your child off of the Depakote. Contact me and I'll have our team of neurologists attest to the fact that Depakote can cause these extreme behavior changes.

- agression, severe aggression with little or no provoking

- mood swings

- irratibility

- lack of concentration

- glazed over look in the eyes

- extreme defiance

- regression in behavior, academics, social skills

- talks about parents dying

- slurred speach, babytalk, nonsensical talk

- anger towards everyone and anyone

 

Re: Depakote, Behaviors, and personality

I would love to know if I can get a team of neurologists to attest to the fact that my son's wacky/uncontrollable behavior may just be due to depakote..he is 9 and takes 875 mg daily (500 in am and 375 in pm), as well as 18 mg of Concerta in the am.

I have been asking dr (s) to please put him on something else...this drug not helping/makes worse...he does NOT have epilepsy by the way, he has some behavioral issues/mood disorder (maybe caused by medication and not his actual diagnosis????) 

Why do all child psychiatrists seem to insist that Depakote is proper medication for him (every kid)????

Would love someone to back me up...so at least we can try another method.  Residential treatment/schooling is LOOMING large..don't want to go that route and want to first attempt ALL other medicational/therapeutic options.

Re: Depakote, Behaviors, and personality

My son is also 9 w/ adhd and most likely a mood disorder, in the family. We have been thru several Dr and this one is the best by far. He is on 2.5mg of Abilify & 27mg Concerta in the morning, 25mg Stratera in the afternoon (after school), and 1mg of Abilify before bed. At night he may also take 5mg Meletonin to help him sleep. He is a different boy!!!! We can leave him at parties and not have that knot in our stomach and he is doing AMAZING in school!!!! I am not sure this will help, but keep searching.

Re: Depakote, Behaviors, and personality

I hope you are still reading here. I would really like the names of your son's neurologists. My daughter has been diagnosed with Intermittent Explosive Disorder since being put on Depakote for seizures and her doctors say there is no connection. Her entire personality has changed and she also has profound retrograde amnesia....not remembering many years of her life. Has anyone ever heard of that being caused by Depakote? It started when she was put on that medication.

Anyone else with similar experience?

Re: Depakote, Behaviors, and personality

Yes, I have a bipolar disorder. I feel depakote doesn't work to well for me. My moods escalated after being on it for a 1 1/2 yrs. My son takes tegretal for his mood disorder and he couldn't live w/o it.

Re: Depakote, Behaviors, and personality

Yes, I have a bipolar disorder. I feel depakote doesn't work to well for me. My moods escalated after being on it for a 1 1/2 yrs. My son takes tegretal for his mood disorder and he couldn't live w/o it.

Re: Depakote, Behaviors, and personality

Hi, my four year old son just started having seizures a few weeks ago and was admitted to the hospital and the EEG confirmed three types: absence, atonic, myoclonic. He also has Angelman Syndrome, which makes things more difficult because he doesn't talk and can't tell me how he's feeling. But the neuro started him on Depakote and it took the seizures away within a few days but now his behavior is out of control! He is biting, hiting, pinching and will not listen to me when I ask him to do things. He's so restless and is extremely sensitive as well. He's normally such a sweet kid (with the occasional behavior problem) but now it's a constant battle. I'm really grateful for all the input here because I was wondering if this was just the way things were going to be. The neuro we got at the hospital didn't have an available appointment until June of '09! So we switched and are seeing a new one next week. I think I'll be pushing for a new med. Does anyone have success with other meds in a similiar situation?

Re: Depakote, Behaviors, and personality

My little cousin who has autisum was percribed depakote and it made her have more mood swings, more break downs and more problems in genral.It got so bad that her mother had to ask for a depression med. also because it seemed like evrything they would try wouldn't work or would cause another problem and she also felt like you say, like her everyday was just a "constant battle" with her 12yr old daughter. But it really was the depakote that was causing the problems because now she's on Keppra and is doing a lot better so far.(3months now)I'm also on keppra for my tonic-clonic seizures and it works really good.I've had just three seizures since last year.try it.=]

Re: Depakote, Behaviors, and personality

I was diagnosed with seizures at age 3 and I am now 45. I have absence seizures and am going to be put on Depakote. I was on that while I was pregnant with my son, and now that was over 20 years ago. I do however know that while I was a kid and was on lots of different types of seizure meds, and I just wanted to let you know that kids with epilepsy do rebell just like other kids, but our brains are damaged by the seizures and so it may take us longer to respond to the correctness our parents give us.

While talkin to my mom today, she mentioned that I was a handful as a child, and that is because I had epilepsy and also ADHD, and was put on meds for both. I am going to be put on a med for my add again on friday. So I am hoping that the meds work with each other.

However, as a child, we have to remain seizure free if we want to drive. your daughter is too young for that, but she will have to consider that when she is old enough. we are limited due to our disorder.

hope all goes well

sandy moore

Re: Depakote, Behaviors, and personality

I forgot to add, I had troubles just like your daughter when I was in kindergarten, 1st grade and second grade. In Hawaii the doctors told my mom they thought I was retarded, but I now have a College degree so I am not stupid or retarded.

all you can do is just be patient and loving and helping her with the areas shell  is struggling in. that is what my mom did for me. we played alphabet games, counted with flash cards and she would invite a few friends over. I was never allowed to be in a huge group of kids unless I was in school. I was watched like a hawk, and that was because mom was afraid for me because she knew the kids were mean. Just tell your daughter you understand she is having a tough time right now, but things will get better, and to be patient and she should work with you to where she is learning. time and patience is what you will have to learn, for we need extra time to calculate the directions given to us.

my email is sancmoore1@yahoo.com if you need to talk more or have any questions

I will respond

love and prayers

sandy moore

Re: Depakote, Behaviors, and personality

I am 20 years old and was diagnosed at 16.  I am on Depakote (I am in Australia and here it is called Epilim) along with Lamictal and Tegretol.  On these medications I experience lack of energy, exhaustion, lack of concentration, loss of memory, loss of motivation and mild depression.  I don't know which of my medications is causing this.  Just support your daughter, tell her specialist about the symptoms and ask about alternative medications.  I am just about to lower/change one of my medication and I hope that it works.  My email is aramey.tuggeranong@ljh.com.au please email me if you need any help with anything.  I hope all goes well.

Re: Depakote, Behaviors, and personality

I completely understand how this feels. I'm 18. I started dating my boyfriend 8 months ago. He has epilepsy & the last 6 months have been a rocky road with medications. I've seen him become a completely different person, almost die & have two seizures right next to me. It's a terrifying ride. It's scary what medication can do to a person. Topamax made him extremely forgetful. Zorantin made him pyscotic. Keppra made him sleepy. None of them stopped his seizures. Right now we're on a mix of Depakote & Vimpat, it seems to be going pretty well, not a lot of side effects that we can see right now. 9 days without a seizure too. He hasn't gone that long in a long time.

 Medications do different things to different people, we're all different and have different body chemistries. I think you should tell her doctor that you're geinuly concerned. Yeah you want to stop the seizures, but at what price? Completely changing your daughter's personality for a switch of maybe controlling seizures. It's a tough desicion but something else could help stop them. 

 Discuss your options with her doctor, tell him your concerns, he should listen, if not, maybe it's time for a new doctor. Be your advocate, do your research when new meds are discussed.

 

Much love & hope

Bri

Re: Depakote, Behaviors, and personality

My daughter has  been on Depakote off and on since age 3, and continuously for the last 20 years.  Depekote, like most seizure medications, impacts brain chemicals such as dopamine or GABA - which control thought processes and brain functions.   The inevitable result is that anyone does all-too-quickly become a different person on these drugs.  Equally inevitable, however, is the brain damage that occurs with continuing seizures, and the decline here can be far worse.  In a sense, brain damage or alteration occurs both with and without medication, but the medication is much kinder and slower and some medications minimize these problems (though depakote is not one of them).  The real name of the game is to control the seizures for x number of years, eliminate the threat of seizures (if at all possible) and then get off the meds.  Depekote is effectively the industry standard - the most effective at controlling seizures of all anti-seizure medications.  However, other newer meds might also do it for your child, and with less mental impairment.  Alternatively, you can try the vagus nerve stimulator route, which was somewhat successful with my own daughter.  Schools are not that helpful in arresting the mental decline of kids with seizures.  Parents need access to vouchers, in my opinion, that would allow them to obtain some of the federal money used in special ed for the purpose of hiring their own psychologists and/or special ed consultants and bypassing the corrupt and inept song-and-dance of the school systems (this comes from someone who has fought tooth-and-nail for public education).  I've essentially given up on outside help.  What you've got to do, in my opinion, is give your daughter all the stimulation you can (without generating seizures), and make a very special effort to create a kid with real physical stamina and endurance so as to make exercise a real option for eliminating weight-gain later on, and for stimulating her mind in other ways.  Body and brain development go hand-in-hand.  After 32 years of this game, I continue to be surprised by what the neuros don't know and surprised even more by what they don't want to touch or delve into.  Medicine is often too bifurcated to allow efficaceous treatment, and this is especially true in the realm of neurology.  It's best for you to keep in mind that she's your kid, and it's going to be up to you to take care of her needs and shape/reshape her in the manner that you feel is essential.  The influence of depakote is probably going to mandate a continuous effort on your part to shape and reshape her.   Ask for advice often from lots of professionals, including psychologists, but in the end remember that it's going to be up to you to perform.  That's the bottom line.  I've been there.  I wish I could tell you something a bit easier, but that's the way it is.  You as her "informed" parent will be able to take appropriate actions, and you must not hesitate to do so once you have thoroughly researched them!  Best wishes and God's speed !!

Re: Depakote, Behaviors, and personality

My son, now 10, suffered horribly while on Depakote.  There were serious cognitive and behavioral side effects-- don't let the Dr. tell you otherwise.  My son is generally very sweet and good-natured, but became a "bear" on Depakote.  We had to stop it-- this was a few years ago, but he was able to tell us then that he just could not "stop himself".  He was very cranky, irritable and aggressive on Depakote.  I'm sorry to hear of your daughter's struggle on the medication. 

Re: Depakote, Behaviors, and personality

I don't know if anyone has mentioned this quite as specifically as I'm going to... I haven't read all the comments...

 A lot of seizure medications are also used for people with bipolar disorder.

Think of your mood on a spectrum. Manic is on one end, depressed on the other. A "normal" person is in the middle with what I can visualize as casual fluctuations up and down. Depending on the type of bipolar disorder, fluctuations happen more quickly and more severely. Depakote is used to affect the mania in a person with bipolar disorder. It slows your judgement, giving you the time to think about what your doing. So this lowers your mood on the spectrum. Now think of what this does to a "normal" person. It lowers them on the spectrum. They are closer to depression, thus more inclined to be aggitated, aggressive, sullen, or whatever symptom you'd like to throw in there.

 Someone else made a comment about self mutilation. I self mutilated the most while I was on Depakote. This is almost non-existant on Lamictal.

These drugs are being used on teenagers and adults to specifically alter their mood. I can only think what it is like for a small child. Depakote is a drug they like to use before they use Lithium... If this medication isn't improving your lives, push for a switch.

Re: Depakote, Behaviors, and personality

My little  girl is 10 years old. She is Depokote ER. She has the exact opposite. When we put her back into the Charter School she started eclerating again. Alot of the other medications make her feel like a zombie and makes her extremly tired all the time but the Depokote not only is managing her seizures it doesn't effect her mentally like the other drugs especially phenobarbital and tegretal does.

I hope things work out for you!

Re: Depakote, Behaviors, and personality

My four year old son has been on Depakote for a year and a half for frontal lobe epilepsy and his behavior changed dramatically since he started it- He became sad, extremely angry, very irritable, etc. not long after starting.  Our neuro office told us that he may need to see  ped psychiatrist and that his behavior is unrelated to the Depakote or his seizures.  After reading these comments, I am really wondering if it is side effects from the Depakote.  Also, has anyone experienced strange speech, like nonsensical baby talk?  He just started this two days ago and it is really bizarre...  Anyone else experienced this?   Thank you everyone for sharing - this has been such a big help!!!

Re: Depakote, Behaviors, and personality

It was very difficult to read all of the posts thus far on this board, but I did it. I find it uplifting when I read a great post on how awesome this drug is for some. It's also heart breaking to read the down side on depakote, on which my family can mostly relate to.

 

At the age of five my son was diagnosed W/Lennox Gastaut Syndrome and has been taking depakote since. We've experienced nightmare-ish side effects to the awesome seizure control. My son went from being a bright eyed young innocent boy to being a very explosive behaviored young boy. Having 1-100 seizures a day, down to one a night. That itself is a miracle and we welcome it in our home.

 

I've noticed a few posts and thought to interject some thoughts. There is a price, on health over all to be paid if you don't use a drug that is successful w/seizure control and nasty side effects vs one that doesn't cover seizures as well w/out nasty side effects. The brain, even though resilient at times, can handle a lot...but over years and years of seizures it can develop other issues for the epileptic. Cerebral Palsy or cognitive delays just to name a few.

 

It's a difficult road to walk and always make sure you're on the right path, when it comes to medication and side effects. We all have different chemistries and react differently, hence all the different medications. Over the years I've had to deal w/the explosive behavior that changes in a moments notice w/out warning, and no matter what you do as a parent, it won't go away.

 

It's quite exhausting. Then to have doctor's say it's give to people w/Bi polar, so there's no way on this God's green earth that your child could have a behavior issue from the medication. Reading many forums and this board itself, shows me that science isn't always right.

 

Just make sure you communicate w/your doctor and stay on the same page. Make sure you let them know what you will tollerate and what you wont, for your child's sake. I've let go one neurologist due to his lack of being able to listen. Our newest neuro is awesome, but he always is on the side of science. And rightfully so, after all it's science that diagnoses us and treats us.

 

We decided to try Topamax with Depakote for more seizure control and found out it helped w/my son's behavior. Immediately the next day he could sit still, not be compulsive. It was amazing. Yet we still have behaviorial issues and are going to see a specialist for this.

 

I hope this sheds some light on anyone's current situation. Never give up hope and always challenge the doctor's. Always.

 

Peace

 

Re: Depakote, Behaviors, and personality

I have found that each E drug has a common side-effect. DEPRESSION.  Every drug that I have taken, I was depressed. I have been taking Buspar for ten years. This works great. Of course, the age of you daughter will be a factor in prescribing an anti-depressant. I would talk to my neuro or GP about it.  Depakote ER seems to have less side effects, the med stays in the system longer. Consult your nuro about  switching from regular D to D ER.

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