Seizure meds. causing aggressive behavior?

Micheel - posted on 03/06/2009 ( 39 moms have responded )

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I have a 5 year old son suffers from seizures since 6 mos. of age and increasing Keppra has caused his behavior to change thus causing commotion in school. Now being asked to have him removed from before/after care in a public school environment, just wondering if anyone has had any experience with fighting a school system??? HELP!!!!

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Karen - posted on 07/21/2012

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A little late for the original poster...but this is for whoever comes across this thread several years later, as I did.
We have a little Down Syndrome boy who began having seizures at age 1. He was put on Keppra for a few months, which didn't work (but made him depressed), then was put on Topomax, which did work for several years. During those several years, he was just the sweetest little boy. He never had aggressive behavior -- just sweet and loving. He went to regular preschool, and sometimes I would go and observe, and he would sit in his chair very well -- better than most of the other kids, and pay attention to the teacher. Some of the other boys would hit or have aggressive behavior (normal for preschoolers), but my son never did.
Then, when he was 5, he started having seizures again. We began increasing the dosage of Topomax, which seemed to cause language problems. He lost about 90% of his spoken language during this time. When he turned 6, he started a little bit of aggressive behavior -- slapping, sometimes, although it didn't seem to be mean, just an inappropriate way of showing affection, if that makes any sense.
Eventually, his seizures got worse, and it was obvious the Topomax wasn't working, so his doctor switched him to Trileptal. This had absolutely horrific effects on his behavior. He became severely hyperactive -- his teacher said he couldn't sit in his chair for more than 10 seconds. He became incontinent -- going through a pullup every hour, when before he'd been pretty much potty trained. And he became so violent (hitting, kicking, pulling hair, knocking off glasses) at school, that his principal tried to get him kicked out and put in a school for special needs kids only. He started having autistic like meltdowns in places like Walmart or church -- where there were lots of people and noise and lights. And he started a lot of autistic like stimming activities.
We listed all these behavior issues for our doctor, and she said that Trileptal is used not only for seizures but also for kids with bipolar disorder. She said sometimes it can cause kids who are "normal" psychologically to develop bipolar like tendencies. At any rate, she took him off the Trileptal and put him on Depakote, which essentially put him into a fog, but did help the behavior. We eventually put him on the Ketogenic diet, which brought the seizures under control, and then his doctor weaned him off Depakote. Today he isn't on any seizure meds.
Even though his behavior improved after going off Trileptal, he still have problem behaviors today. His newest thing is pinching and scratching when he doesn't get his way.
I read that sometimes seizures can cause autistic behaviors, so am wondering if that's not what triggered Jon's bad behavior in the beginning, and then the Trileptal just somehow exacerbated it. Anyway, one thing we're doing is forcing him to cut back on some of the stimming activites, which seems to have a remarkable effect on improved behavior and impulse control. We just started doing that, so will have to see how it works out in the long run.

Samantha - posted on 05/14/2009

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My daughter is on Epilim (Depakote) Keppra, Clobasam and Topamax. She has had seizures since she was 18 months old. We started on Epilim and keep adding more meds to try and control her seizures. Its hard to know what her 'normal' behaviour is, tho i think it has gotten worse since Keppra was added last year. I can really empathise with you, Nicole Carlton : "She is not aggressive but will not settle down and listen, she does things on purpose even when she knows she is not allowed. And her time outs and taking away toys doesn't seem to work." Exactly like my Bronte! My Neuro has suggested Vit B and we have started that this week, so I will keep you posted if it works! (All my fingers and toes are crossed!!)

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Shannon - posted on 05/14/2012

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Hi, my son is 5 and is on keppra also for seizures, he was having these headaches and crazy vision thing many times during the day, we did tests, eeg and all come back normal, but our dr thinks he is having some form of seizures so put him on this meds.. I notice his behavior is getting bad...Seeing dr today to see about it.

User - posted on 04/25/2012

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I have a 12 year old daughter that took tegretol as an infant.She is learning disabled and in the past two years her behavior has really changed for the worst. When I found out that she had a learning disability my first thought went back to the tegretol she had take when younger ,but the doctor s and the teachers all told me it not a concern. Now after reading other people;s experinces with tegretol and other drugs like it ,I believe that I was right in my conclusion . If any one has any info that might help please contact me on facebook . thanks molly midtgard

Kasha Lee - posted on 01/06/2012

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hey i have a 2 month old son an he is on epilim an tegretol due 2 seizures he has been having since 2 weeks old,lately i find him 2 be very irritable an he acts very agressive for a 2 month old an i am noticing peeling of the skin along with a lilttle hair loss on one side of his head.....i really dont know if its the medication causing this ?

Teri - posted on 05/28/2009

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Kepra made my son very agressive and beligerant.... to the point of being concerned for his sisters' safety. He was 16 (or so) at the time he took Kepra. I had his RX changed. He was then on Lamictal and we have seen a wonderful change in his behavior. He has been on Lamictal for 3+ years.

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I have a 4yr old son who had several seizures since 14months.Then, he was on Epilim for more than two years. This medication stops his seizure, but I have discovered many side effects. At the beginning, he was always dizzy and sleepy. Then he was always sick, catch cold and having tamtroums. It was hard enough to look after him, then we discovered that he had a global developmental delay. Finally, I have noticed that he always have nose bleeding. Apparently these are the possible side effects of Epilim. My son has stopped Epilim for a few months now. He is learning everything a lot faster. But he still carries behaviour and norse bleeding problem. Hopefully they will wear off as time passes.

Traci - posted on 05/16/2009

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Hi there, my daughter was 17yrs when she was given Keppra, during the 2 weeks that she was taking it she was depressed enough to be thinking suicide. She was attending college at this stage,she was so unsettled she was hospitalized and it was withdrawn immediately.

Jaimie - posted on 05/15/2009

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My son 5 yrs old also on kepra, I explained to his Neurologists the mood swings and changes in behavior. They have since started my son on B6 to helo with this. I will keep you posted with any changes he may have.

Karen - posted on 05/15/2009

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Quoting Stephanie:

My son is on Trileptal too i find it good but it doesnt control the seizures on its own so he's on Epilim (which i think is Depakene) aswell he's been on it a year now and my god he's getting worse from behavioural problems to tiredness, sickness if he's not getting sick then hes getting nausea, its getting worse by the day, ive spoke to his neuro and she said its unlikely to be it but i had enough and took him to the hospital and demanded something to be done they done blood tests, MRI and EEG scan and everything came back normal, of course EEG picked up abnormalities and MRI showed the same thing but nothing else so the only other explaination is the Epilim.. Is anyone else's kids suffering like this on the Epilim and what do you think i should do? thanks for listening...



My son was initially placed on Trileptal and he had all the side effects your son is dsiplaying.  Nausea, tiredness, sluggish and stomach issues and that's all he was on.  In my opinion it's the Trileptal. I don't know anything about the Epilim though. He is now on Keppra and although it's definitely better i still see side effects.  The problem I notice is that these dr's always want to classify side effects to meds into a small category of what the side effects could be and if it doesn't show up on their little chart they say no this particular drug only has this one side effect so it can't be from that.  We know our children and before being put on these meds they didn't have these complications.  Every child is different and as their body changes especially during adolescence with their hormones it affects them.    

Karen - posted on 05/15/2009

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Quoting Stephanie:

My son is on Trileptal too i find it good but it doesnt control the seizures on its own so he's on Epilim (which i think is Depakene) aswell he's been on it a year now and my god he's getting worse from behavioural problems to tiredness, sickness if he's not getting sick then hes getting nausea, its getting worse by the day, ive spoke to his neuro and she said its unlikely to be it but i had enough and took him to the hospital and demanded something to be done they done blood tests, MRI and EEG scan and everything came back normal, of course EEG picked up abnormalities and MRI showed the same thing but nothing else so the only other explaination is the Epilim.. Is anyone else's kids suffering like this on the Epilim and what do you think i should do? thanks for listening...



My son was initially placed on Trileptal and he had all the side effects your son is dsiplaying.  Nausea, tiredness, sluggish and stomach issues and that's all he was on.  In my opinion it's the Trileptal. I don't know anything about the Epilim though. He is now on Keppra and although it's definitely better i still see side effects.  The problem I notice is that these dr's always want to classify side effects to meds into a small category of what the side effects could be and if it doesn't show up on their little chart they say no this particular drug only has this one side effect so it can't be from that.  We know our children and before being put on these meds they didn't have these complications.  Every child is different and as their body changes especially during adolescence with their hormones it affects them.    

ULINCIA - posted on 05/13/2009

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I KNOW WHAT YOU MEAN. MY SON WAS IN REGULAR CLASSES UNTIL I NOTICED THAT HIS LEARNING ABILITY WAS NOT UP TO PAR. IT TOOK ALMOST A WHOLE SCHOOL YEAR, AND DIFFERENT TEST TO GET HIM IN IEP. NOW THAT HE TAKES IEP I NOTICE THAT HE HAS A LEARNED A LOT MORE. THE CLASS IS SMALLER AND HE UNDERSTANDS A LOT BETTER. BASICALLY YOU HAVE TO STAY ON THE SCHOOL, IF NOT THEY WILL PASS YOU ON LIKE YOU NEVER EXISTED.

ULINCIA - posted on 05/13/2009

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I HAVE'NT HAD ANY PROBLEMS WITH THE SCHOOL SYSTEM, ALTHOUGH I DO NOTICE CHANGES IN MY SON BEHAVIOR. HE HAS HAD SEIZURES SINCE 18 HOURS AFTER BIRTH. TJ HAS CEREBRAL PALSY. HE HAS BEEN ON 2 DIFFERENT MEDS.

Autumn - posted on 05/12/2009

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MY DAUGHTER HAD ALOT OF PROBLEMS ON THAT MED, SHE WAS GAINING ALOT OF WEIGHT AND AWFUL MOOD SWINGS, I HAD HER CHANGED, I AM SURE EVERYTHING WILL WORK OUT, JUST HANG IN THERE...I KNOW IT IS A ROUGH ROAD...

Jessica - posted on 04/20/2009

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My 9 year old son is being weaned off of 3 anti-seizure medications right now and is not himself. He is more aggressive and restless. (He is also on the autism spectrum.) But the school has been sending him home early for his behavior. The best person to have on your side is an advocate. I am in wisconsin and we have the Department of Public Instruction Special Education Team or the WI FACETS. Try seeing if your state has something similar. I called one today for the first time, and she was very helpful.

Tania - posted on 04/04/2009

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Hello, Let me first start off by saying do not let the school district bully you and your child. You need to call an I.E.P. also you should get in contact with a protection and advocacy company in your area and Amercian Disabilites Act. By the way what state do you live in???  We went through the same thing but at 11 years old. My son was on two medicines Carbatrol and Depakote and he was having really bad behaviors at school.  So the Neurologist started to wean him off the Depakote and increase his Carbatrol and now he is fine and completely off the Depakote. I was kind aof glad we got him off of Depakote anyways because it can damage his liver and kidneys.We also tried Lamictal but he was allergic to it and had to be taken off of that immediately. Well good luck.....

Rachael - posted on 04/03/2009

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my daughter is 6 1/2years and has been on Keppra for about 8months. At the start we had very bad mood swings from floods of tears to absolute rage. Now she has been on the same dose for 6 months she has settled but every time we increased the Keppra we had the same problem. My daughters school doesn't understand epilepsy. They are constantly talking to me about how emotional she is. She was on Epilim for a while but that made her hair fall out.

Nicole - posted on 04/02/2009

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Wow!! I thought I was a terrible mom that couldn't control her kid! My daughter has a ton of behavior problems. The neurologist never mentioned the medicine causing her behavior. She is not aggressive but will not settle down and listen, she does things on purpose even when she knows she is not allowed. And her time outs and taking away toys doesn't seem to work. She has been on Keppra since she was a year old and is now 3 & 1/2, even though she has recent dosage increases it hasn't seem to work so the doctor wants to change to depakote. I'm hoping her behavior will change but I'm not holding my breath. I'm glad to know that I'm not the only one, but sad that I am, because I hate that our children have to have seizures at all.

Julie - posted on 04/02/2009

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My sonis also on Keppra.  He began to have problems with behavior as well.  He had a short temper and would blow up at every little thing.  My doctor put him on Vitamin B6 to help with the side effects.  It helped!  You should ask your doctor about it.

Michelle - posted on 04/02/2009

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Hi! My 6 year old had her 1st seizure this past October & was placed on Keppra. She also started having major behavior issues while on this medication. She has since been switched to Trileptal. She is in kindergarten and was acting out at school. The school had a behavioral specialist come in to observe her and make suggestions to help modify her behaviors. It has been a slow process but we are seeing positive changes. She also attends publioc school. You definitely need to be your child's advocate because I have had to fight alot for my daughter too!! Best Wishes!!!!

Annette - posted on 04/01/2009

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Quoting Micheel:

Thanks for all the input...He is on keppra, lamictal and phenobarbital....as for the school they have backed down since I found out that my child has rights under the Amercian Disabilites Act (AMA) and the school being a public school needed to make sure they provided the necessary care for him just as in his class they have added an extra staff in the before/after care



EXCELLENT! Congrats on getting the services he needs! Way to go Mom!

Clare - posted on 04/01/2009

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hey im from england my little boy is on keppra and also just started clobrazam but is still suffering seizures!iv recently taken him out of nursery as they really didnt help with his behaviour issues now hes goin to a special needs pre school in a few weeks as his behaviour is just out of control and shows really obssessive behaviour (constanly has a hood on at the mo coz noise is really effecting him and he screams sayin there bein loud when ppl are just talking, he is also very very hyperactive even tho they say he shud b sleepy on the drugs hes on hes really not even after bad seizures hes still running round very hyperactive!!!but keppra did seem to increase all his behaviour issues but ya cant take him off it for a while til ya find something else!!the docs arent very helpful here and just give me a drug but dont tell me about it at all its quite scary just pumping my little man with drugs and hes only 3!!

Kirsty - posted on 03/31/2009

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my brother is the same it was like reading about him i suggest u ask your doc about the new drug called TOPIMAX my brother has been on it over a year and touch wood he has been seizure free he is also still taken his epalin good luk x

Micheel - posted on 03/31/2009

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Thanks for all the input...He is on keppra, lamictal and phenobarbital....as for the school they have backed down since I found out that my child has rights under the Amercian Disabilites Act (AMA) and the school being a public school needed to make sure they provided the necessary care for him just as in his class they have added an extra staff in the before/after care

Jami - posted on 03/31/2009

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Quoting Micheel:

Seizure meds. causing aggressive behavior?

I have a 5 year old son suffers from seizures since 6 mos. of age and increasing Keppra has caused his behavior to change thus causing commotion in school. Now being asked to have him removed from before/after care in a public school environment, just wondering if anyone has had any experience with fighting a school system??? HELP!!!!



This is so frustrating...I know.  Keppra is the only seizure med that works for our 10 year old son.  But his aggression and other behaviors are so frustrating.  He has trouble at school as well.  The district is, by law, obligated to provide services to your child.  But as for the before/after school care, if it is in the school (such as a YMCA childcare) it doesn't matter.  That is run by whatever company is providing the service.  They are just sub-contracted by the district to offer childcare.   And to be honest...the Keppra shouldn't change his behavior that much.  I would be talking with his doctors about other options.   The best way to fight a public school system is to involve your local advocacy group.  Such as PAVE or something.   Also,  knowing the laws and what is required by the school district is your other strongest thing.  Whenever I go into an IEP meeting for my son I have a copy of my rights and the districts procedural safeguards.  Plus I go into the meeting with a list of what I want discussed and what I want to see happen with my child.   Knowledge is POWER, my friend!  It works everytime!  Be firm.  Talk to them honestly, yet respectfully.    Most administrators and teachers I've come in contact with back down immediately when you walk into a meeting like that.  Just portray confidence! 

Stephanie - posted on 03/31/2009

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My son is on Trileptal too i find it good but it doesnt control the seizures on its own so he's on Epilim (which i think is Depakene) aswell he's been on it a year now and my god he's getting worse from behavioural problems to tiredness, sickness if he's not getting sick then hes getting nausea, its getting worse by the day, ive spoke to his neuro and she said its unlikely to be it but i had enough and took him to the hospital and demanded something to be done they done blood tests, MRI and EEG scan and everything came back normal, of course EEG picked up abnormalities and MRI showed the same thing but nothing else so the only other explaination is the Epilim.. Is anyone else's kids suffering like this on the Epilim and what do you think i should do? thanks for listening...

April - posted on 03/22/2009

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Dear Micheel,



    My son was Keppra when he was 6 and I had him in a private christian school. His behavior got out of control and the principle of the school tried to scare him into behaving by telling him he was going to hell. I finally went to his Dr. and demanded taht he put him on something else or I would find a Dr. who would. Try and remember and to all mothers that read this, We are the ones that are paying their salaries and we don't have to take their condescending remarks or their ridicule. If we don't fight and give our kids a voice then who will.



   My advice to you is to get your child off Keppra and on to something esle.

Rhon - posted on 03/22/2009

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I read that a side effect of Keppra can be anxiety or aggression, changes in mood. My daughter had problems with Depakene, was very aggressive and also had an inflamed liver and low platelets caused by the drug. We switched to Topamax which works for her ok and gives her some long periods of control but we may have to go with Lamictal when she outgrows the safe dosage.



I know seizure meds trigger behavior changes.Watch out for a physical changes. Meds can be hard on liver and kidneys. They also can affect sight and other senses.



It may be time to change meds. That might be part of the solution. Also talk to anyone who has input into your son's iep and any medical or therapy professional who does intervention or treatment.



There is possibly a support group for epileptics or for families of children with epilepsy in your state. they can offer some guidance and support but also try the national epileptic association This info might be made available from your child's neuro or pediatrician. As for fighting the school system. the more documentation you have the better. And stand tough, you don't have to be popular as a parent, just keep it in perspective.

Shay - posted on 03/22/2009

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My daughter is currently taking Depakote and Lamictal. Since taking Depakote, since she was 3 now she's 7, I've noticed her having problems as far as learning is concerned. Nothing seems to stick once she's learned it. We are going through a difficult time as of now getting the school to put her in classes with less students or a more one on one setting. I'm learning a lot myself about the different medicines and the effects.

Sharon - posted on 03/22/2009

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Ask your doctor if it would be possible to switch to Lamictal. My daughter's doctor told me he has patients that their parents ask to keep them on Lamictal even if they don't need it anymore because they behave calmer while on it.

Annette - posted on 03/10/2009

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I find that hard to believe that the services are out of their scope actually. Did you get the list of your rights when they did his IEP? it should define your course of action should you disagree with anything you agreed to originally. If he qualified for it before, he qualifies for it now AND they may be required to HIRE a specialist to assist in his after/before care. Check the paperwork they were supposed to give you and look for your document that lists your rights.

Shanna - posted on 03/10/2009

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My son was on Keppra as well when he was in preschool, and he had so many problems with his behavior. His teacher was pretty cool with him. But if I were you I would talk to your childs Dr and see if you can change his meds. My son is on Lamictal now and he is like a different child.

Jenefer - posted on 03/10/2009

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my son went thru the same thing..he was on depake...i keep telling his dr but he kept saying it will pass..well finnally it was time for ian's appt. and when the dr came in ian peed on the dr's shoes and he agreed then that there was a problem with the meds....good luck

Micheel - posted on 03/10/2009

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thanks for the comments NJ, Union county resident and looking at the before/after care which they claim is outside of what they are required to provide his services from 9 - 3 are covered

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I have daily issues with our school...with Cydney however, I found most meds for her epilepsy caused severe behaviour issues...our current choice is Depakene..she has been taking it for over a year with marked improvement in her behaviour...just a suggestion, and much fewer side effects as well....good luck!!! I'll keep you posted about the school fight if I get anywhere!

Annette - posted on 03/07/2009

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AH HA! Where are you? MOST schools in the U.S. HAVE to provide the services you request or pay to provide them for you as long as they are resonable. What are you askign them to do that they are refusing, or trying to refuse?



Depakote made our son so hyper and frustrated we all didn't sleep for three months. It didnt' help his seizures enough to justify the side effects. He is now on Lamictal and we are waiting to see if it helps.

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