does epilepsy cause behavior problems???

Kelly - posted on 02/01/2010 ( 109 moms have responded )

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my son was diagnosed with epilepsy 4 yrs ago after having encepalitas,they were just abcences to start with but as he's got older they have developed into,'complex partial seizures', with this and the different meds they have tried him on (he is currently taking eplim 1000mg bd and 1000mg of keppra morn + 500mg at night) he seems to av got more aggresive, his behavior seems to be getting worse, his attitude stinks, his memory is terrible and its hard to keep him concentrating on anything for a decent amount of time,.he's just turned 12 so i know the good old hormones are going to be kicking in but i just feel he's been labled something he's not (THE NAUGHTY BOY )..has anyone else ever had these problems ....help me please ..!!!

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Family - posted on 04/07/2012

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I don't know if Epilepsy causes behaviour issues but I do think that is it common for them to go hand in hand. Sometimes the seizures can muddle the brain for awhile. Sometimes it is a side effect of the meds. Sometimes there is more than 1 neurological condition occurring at the same time, either from a shared cause or, as our psych. explained to us, seizures can cause changes to the neuro pathways in the brain. if you think your child's behaviour is linked then it probably is, but it will take a lot of detective work to decipher exactly how. All I can say is Trust Your Gut. You are the parent and you are in the best position to observe changes in your son. looking back over the last 10 yrs since my son was first diagnosed, I will tell you what I wish someone told me. Keep a journal. Record changes in meds and other medical events. You think that you will retain it all but as time passes and there are more and more changes, they all start to merge in you memories. Also keep a log of unusual behaviour. Temper tantrums, difficulty sleeping, sleepiness, changes in eating habits, learning dificulties etc. When put together it will help you ID patterns which will help you figure out what is going on. Also I would keep in mind that comorbitity (the presence of one or more disorders) is very common with epilepsy. I wish that I had my son tested for these other disorders a whole lot sooner than I did. ( Diagnosed epileptic at 4 and aspergers at 14).

Donna - posted on 07/02/2013

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My daughter is 29 and she is aggresive and mood swings you just never know when a backhander is coming yikes!! Her meds are KlonoPin 0.5 two times a day and Levetiracetam 500mg two times a day and Keppra 500mg two times a day, she was living in South Carolina and is now here with me in Rochester, ny and will be hooking up with a new neurologist. My question is will that Lecithin mess with her medications. Need some advice

Thank you
Donna and Misty

Sandy - posted on 12/15/2012

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Michelle ... get her off Keppra and on a different med. This drug has horrible side affects for so many people. It's not worth it!! Trileptal is my sons primary drug for 13 years. One thing to also try is over the counter Lecithin. It's for brain and nerve function. It has decreased my sons daily seizures to one every couple of months. I give him 1 1200 mg capsule daily. My son was put on Lamictal as a secondary drug 13 years ago and his face got a rash. It got so bad that it closed off his eye. I know it was the beginning of Steven Johnson Syndrome. Doctors argues with me about the Lamictal being the cause of the rash but .... funny how it started getting better with each decrease in the drug. I had proof on paper to show the doctors and then they had to admit that it was the Lamictal. Doctors are only guessing when prescribing drugs and handing out advice. A mom has mothers instinct!! Good luck.
Sandy Lora

Yo - posted on 12/26/2011

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Yes it does...been there,done that. Epilepsy started n 5th grade. Now I am middle aged. There has been so much pain. Whether it was in school or just growing up in a family. Whatever u do, love the child. Let the child know they are wonderful, beautiful and u love them!
Yo

Sandy - posted on 04/26/2011

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Angela .... you need to do some advocating for your son!! Does he have and IEP (individualized education plan) at school?? You need to let them know that they can't keep suspending him from school because he has special needs!! He has rights!!

He may be getting ready for puberty and that adds it's own problems. Check out the VNS device, add Lecithin 4 times a week for brain and nerve function. Even a regular psych or therapist could help. I am trying to do that for my son right now but it's not easy. Good luck.
Sandy Lora

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Elizabeth - posted on 07/14/2014

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I'm beginning to wonder if there is any answer to anger outbursts. In our case (with a 24 yo grandson), the increase in antiseizure meds increases the behavioral problems, though the dr. seems to think this isn't so. My grandson has atonic seizures (drop attacks). They are very momentary. He loses all muscle control and falls, lacerating his scalp many, many times. There have been weeks that seizures are lessened but we still must be on alert and follow him around continuously. Even if there were just one a week and he fell it could be catastrophic. Last week he had 15 drop seizures but was caught every time. Can you imagine trying to keep a very wirey and active young man seated at all times to avoid injury. Behavioral problems have existed all his life but have become especially severe since seizures started on a regular basis 2 years ago. Dr. describes seizures as Lennox Gasteau but he never had a single seizure until he was 12 years old. and from 12 to 22 they were totally controlled with just Tegretol. Now nothing is controlling them and I am at wits' end. Just looking for some support and ideas on how we might be able to handle this.

Jermaine - posted on 06/23/2014

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OMG...I would like to say i am glad i am not the only one with this problem but that won't be right. My son is turning 9 next week and he is always getting into trouble at school. I feel hopeless because i believe i tried everything. I treat him the same as his brother and honestly, i feel like giving up. Sometimes i see that some of the things he does are just to p**s me off.

Hannah - posted on 05/29/2014

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My son is on seizures medicine keprra, clonazepam , clobazam topamas can I give him lecithin and melatonin

Elvia - posted on 05/25/2014

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Keppra can cause aggressive behavior talk with your sons doctor about the side affects of keppra and if you should change meds...

Gerri - posted on 04/22/2014

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Just found your post...Thank you!
I have a 21 year old daughter that has had seizures most of her life.
We have been EVERYWHERE looking for answers, doing unnumeral test...on so many different medications.
She is now on tregrtol and a birth control pill, is not helping still having 15-17 seizures a month.
Now the anger outburst is unreal...I have bruises and cuts...she has run off, call the police on ME...its is a nightmare and my heart goes out to anyone dealing with this...it is Hell on earth!
Thank for all the post and I am looking into starting her on Lecithin and Melotonin!

Maria Ines - posted on 04/03/2014

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Hi Kelly, I am having the same problem as you. My son is 12yo now en he gets in trouble for his behaviour, it is frustrating because I think schools and Doctors should work together to help kids, as well to educate the teachers, because like it or not teachers are not well trained in this areas of disabilities and as our kids get in trouble, parents get bombarded with complains. My son at the moment is on Trileptal, frisium, lamictal (just yesterday I stoped this medication, the seizures are getting worse, before they were very small now are very violent and he screams) and Dilantin and his seizures still between 1 and 3 per night and once a month 20 or 30 small ones. It is not kids fault to be aggressive or naughty is the medication they are on. I am in constant trouble at school for standing up for my son but I don't care, he does not have anyone else to defend him I have to do it. Kelly I am going to try the medication LECITHIN the one Sandy Lora is mentioning and I hope it will work at some point and with the experience I had for the past 11 years (my son also contracted encephalitis when he was 1) I have learned that sometime you have to follow your heart and read a lot and investigate for the sake of our child. Good Luck Kelly and don't desperate and take care. Maria.

Lindsay - posted on 12/13/2013

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Hello Anthony, I was reading your post and my have misunderstood. You had seizures and they stopped. Now you are finding yourself more aggressive etc. Is that behavior you can't control. My 11 yr. old grandson has terrible behavior problems and we can find no help. His mother had 3 grand mall seizures while pregnant with him. He goes out of control with out reason. His anger is out of control and we don't know where to turn. If anyone reading this knows anything about the possible transfer of what my daughter went through to him as a fetus I'd sure be grateful to hear it. lindsaymadding@yahoo.com Thanks

Jessica - posted on 11/14/2013

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Hello, I'm new to this site but have been on others in the last 6 years. In our experience Keppra caused my daughter to behave irrational and completely out of character . My daughter was only on it for three weeks. Within 24 hours of her being taken off of Keppra she was her normal sweet and loving little girl. It was not just a mild change, it was so drastic that even the doctors were surprised. Good luck..

Dacee - posted on 09/18/2013

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My son was diagnosed with dravet syndrome and has had it since he was 7 months old. I've read that a bunch of u arr using keppra. Keppra will affect a small amount of people by making them very aggressive and not themselves. My son is very sweet, quiet loving and very polite but when he was on keppra he became a monster. Literally. He kicked, screamed, banged his head on walls, ran Nd everything you can think of. I told the doctors to put him on something else and shortly after I had my son back. He has recently started doing a few aggressive things towards teachers so I'm now back to the point of wondering what's going because he hasn't been on keppra for 4 years.

Anthony - posted on 07/31/2013

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i my self know what lyn is talking about i my self fell behind in school and yes it can be very frustrating but remember as a young lad around his age he'll soon be changing from the boy hood to man hood as they say well every one differs there but hope this helps

Anthony - posted on 07/31/2013

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hi i came across this on a google search i know im not a mother or woman lol but i my self was diagnosed with photosensitive epilepsy around the time of pubity and now been 8 years with out a seizure but recently in the past 2 years i have got very aggressive alot worse than i was when first diagnosed with epilepsy, after my first appointment with the neurologist we very clearly stated to me and my parents that it can cause anger problems and cause people to become more aggressive i hope this helps

Jamie Jo - posted on 07/15/2013

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My 13month old was just diagnosed with a genetic seizure disorder. They immediately put him on ethosuxamide, the first week was horrible, he became a little boy I did not know, sever hyperactivity, banging his head on the walls, throwing himself backwards from standing. It was horrible, being so young he is not verbal which makes it difficult. I called and spoke to the neurologist office and thru suggest B6 as a supplement to help with all of the side effects. I have read all of the post and haven't read anything about ethosuxamide. Any moms out there have good results with this drug?

Lynn - posted on 07/09/2013

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The behavior in my opinion and (nbu at kennedy krieger) stems from the memory loss. It is very frustrating to not be able to keep up. He is in one place and then when he is back (without you seeing it) someone is talking about something else.

Rebecca - posted on 06/16/2013

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we got hm off epilim and tegretol its just keppra and lamotrogind at mo.he stil having sezeiures

Rebecca - posted on 06/16/2013

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i thought anger wasnt a side effect,i was told it was ouher way round.doctors can b wrong

Rebecca - posted on 06/16/2013

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iv just read kelkyys story and its my life exactly.weve just took him off tegretol hes on keppra and lamotqagol nx he went for a video e.e.g in hospital last wk we find owt results nxt weds.his anger is auwful.im worried

Courtney - posted on 05/10/2013

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My one year old son was diagnosed with epilepsy at the end of March this year. He seemed to be handling it okay for about a week or two. Now he's throwing temper tantrums and has major mood swings. There are times when he just screams for several minutes at a time or cries for no reason. He wants me to pick him up then pushes away from me then screams when I let him go. Its been a rough roller coaster...especially for my baby. The neurologist prescribed him Keppra...but I have yet to give it to him. The neurologist had a horrible bed side manner and wasn't exactly straightforward with me. I felt like he was beating around the bush and like he was keeping something from me. Idk why...but that's how I felt. It took me yellin at the dr and my anger becomin increasingly visible for him to say anythin. And honestly...I think he just told me what he thought I wanted to hear. Epilepsy runs through my family...so I think maybe it was just the easiest "diagnosis" to give me instead of actually acting like a Dr and doin his damn job. My son has had quite a few seizures before and after the diagnosis. He hits his head a lot...he and his big brother (two y/o) play hard. I'm taking my son for a second opinion before even considering starting him on the keppra. What new questions do I ask? What medications do I ask about and/or consider? I've only read three reviews that say keppra works...the rest were all negative. I feel completely helpless right now. I'm "mom"...I'm supposed to make everything better, but my hands are tied right now. Anyone have any advice on how to deal with this and make it easier for my son?

Sandy - posted on 01/05/2013

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Xochitl ... the aggressiveness is most likely coming from the Keppra. It made my son evil at times. I would definitely try to switch Keppra to something else. Lots of choices. Trileptal is my sons main drug for 13+ years. I recommend you get some Lecithin and give it to her. I give my son 1 1200 mg. capsule every day. It actually stopped his seizures completely for 7 3/4 months, after being on it for 3 weeks. Puberty screwed things up but he is back to doing well again. Only having eye deviating seizures every so often verses ones lasting 5 minutes with his arms, legs and eyes moving. Doctors will tell you not to bother but I did it and the results were better than any seizure drug he's been on!!! He's been on most of them. Sometimes 5 seizure drugs at the same time. Good luck.
Sandy Lora

Xochitl - posted on 01/04/2013

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My daughter is 5 years old and she was diagnosed with a rare unique chromosomal disorder and she has a severe Seizure disorder and also experiences behavior issues. She was also diagnosed with microcephaly and encelaphothy. She takes keppra, depakote and clonozepam. With time she has been more aggressive because her seizures have worsened. She was scheduled to get surgery however it was postponed due to her blood not clotting Correctly. Every since she started on the seizure medication her behavior has worsened.

Sandy - posted on 12/16/2012

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Michelle ... just remember that you are your daughters advocate and you have the right to argue for what you want for her!!! Don't settle for what the doctor says unless it's what you want to do. Good luck.
Sandy Lora

Michelle - posted on 12/16/2012

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thank you so much am in process of talking to dr about the whole situation its has controlled her seizures and like u the rash that she had was on her legs n drs argued that it wasnt to do with medication,

Michelle - posted on 12/15/2012

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hi my daughter was diagnosed with epilepsy 2 years ago she was on lamactal but had a skin reaction so switched to keppra 750mg twice aday, since she started the medication i hardly reconise her, she is argumentative angry and lashes out all the time, all i can offer is taking the good days with the bad if anyone has any advice on what i can do then please help
kind regards

Debbie - posted on 11/06/2012

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i think i wrote in the wrong post, my son was on tegretol for a year, stopped in june 2008, no seizures since thank god!

Debbie - posted on 11/06/2012

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@Sarah; my son was on tegretol; I am so happy he is off now since June 2008! more than 4 yrs and no seizures since!

Sandy - posted on 11/05/2012

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Ruth ... medications can have horrible side affects. Keppra and Zonagran are the worst that my son was on, leaving him violent, angry and aggressive. I give me son 1 1200 mg. Lecithin every day and it helps control some of the seizures. It is over the counter and it's for brain and nerve function. Please give your daughter the info for my circle. Good luck.

Sandy Lora

Ruth - posted on 11/02/2012

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My grandson is 5 - he was diagnosed 2 years ago. A lot of seizures and going to see neurologist - medication I don't know for sure....I'm his gramma and I'm trying to answer you or have other's answer me, more correctly, because his personality has changed so much. There have been upheavals in his life but he went from being such a sweet, loving good natured child and has become aggressive, rude, disruptive etc. I'm worried and my daughter is worried. How can you be sure it isn't related to the medication. And yet if you assume it is related to the medication and it is something going on in his life that you haven't discovered that is just as dangerous to leave unattended. I know I was no help to you but hopefully others will have insight. I will tell my daughter about this site so she can speak for herself. Thank you.

Sandy - posted on 10/06/2012

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Jodi ... I have the same problem with my 13 year old son. I had great positive results with his seizures decreasing after starting him on 1 1200 mg. capsule of Lecithin every day. It's over the counter at Rite Aid or CVS. I get them 'buy 1 get 1 free' which saves lots of money. Doctors will not promote this supplement because of their ignorance and greed. Drug companies give the doctors kickbacks. My son was seizing every day and now he is seizing once every month or two or more. Good luck.

Sandy Lora

Jodi - posted on 10/05/2012

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Yes, complex partial epilepsy can cause behaviour issues! You don't mention where exactly the focal point is for the seizures, but dependent on the lobe where the activity is stemming from, and what is actually going on there, a million different things can be affected! Our left frontal lobe controls a whole plethora of activity within us, for example... from movements, to vision focusing, to language, to personality and emotions. My 6 yo daughter has complex partial epilepsy that stems from her left frontal lobe. It currently presents as absence seizures for the most part, although I get the sense that her occasional feisty negative attitude has something to do with her invisible seizure activity in that lobe. She just had her first MRI today and we're hoping to have more answers about the localized activity.

I just had her Grade One teacher tell me that she has a hard time focusing while she's trying to work. well....yeahhhh....duhhhhhh... and then she went on to say that this wasn't from the epilepsy but she felt that it was "just her" and something that she'd have to work on with her. I felt so deflated....she doesn't get it. The 'invisible' nature of this type of epilepsy makes our advocacy all that more important!! "The fact that my daughter's brain is constantly firing off makes it impossible for her to focus right now, despite the fact that you can't see a thing."

Marsha - posted on 10/01/2012

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have anyone use valproic acid my son is 9 super smart but now idk i just wsh he never had such a thing

Sandy - posted on 09/21/2012

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Kathleen ... contact the state social services where you live. There is help ... you just have to get LOUD to get it!! Call the State Medical Board and complain about the regular doctor and how he refused him help. The doctors take an oath and they have to stand by it. Call his Neuro and tell him that you need help in getting him a regular doctor so that a referral can be generated to see the Neuro. The Neuro is the one who helps get SSI. His disability is Neurological so tell the SSI to talk to his Neuro!!! He is the one who signs the SSI papers and swears that the person needs it!!



Give him 3 mg Melatonin and hour before bedtime. See if that helps with sleeping. He could probably take 5 or 6 mg due to his age. Melatonin slows the brain down so he can get into a deeper realm of sleep. This helped my son stop having seizures while trying to get to sleep, during sleep and upon waking. Plus he woke up well rested.



Also I would start him on 1 1200 mg. capsule of Lecithin at night for a few weeks and see how he reacts. If it's going well ... give one in morning and one at night. Lecithin is for brain and nerve function. It worked miracles on my 13 year old when I started it 3 years ago. His seizures have gone from daily to 1 every month or so.



Both of these should help your son. I swear by them and I have been playing with drugs and 6 brain surgeries over 13 years. Doctors will NOT tell you to take these because they don't get a kick back from supplement companies like they get from drug companies!!! You can buy both of these at CVS or Rite Aid, store brand or name brands are usually on sale every week, buy one get one free!!!



Depakote may not be the right drug for him either. Trileptal and Vimpat is what my son takes. He's been on Trileptal as main drug since 18 months old. As for the ADHD issue ... Concerta has helped my son. Never give Abilify cause it brings on worse seizures!!! Decongestants also lower seizure threshold and they can cause seizures to get worse!! I have learned so much and have not been afraid to try anything in an effort to help my son.



Please try these supplements ASAP. Talk to supervisor at SSI and explain how long he's tried to get SSI. You might be able to get back payments if there is papers that show dates and the Neuro backs you up. There are also lawyers that help get the SSI if all else fails. Good luck and God Bless.

Sandy Lora

Kathleen - posted on 09/20/2012

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My son is 26 years old. He started getting grand mal seizures at age 13. He has not been diagnosed with ADHD but I know he has it. He was also molested by the father of one of his friends. I did not know about that until a few months ago when he told me. The molestation took place at 12 years old.



This kid is a mess. He takes depakote for his seizures but he is not at all like he used to be. He is in a rage much of the time. He is depressed, screams and yells, can't sleep, frequent headaches, dizzy. I could go on. He has been trying to get SSI for a while. He has been denied at least 4 times. He is in the middle of trying again. He does not work and he is scared to leave the house. He has had 2 primary care doctors quit on him. This kid is crying most of the time. I have not been able to keep him going to the doctor. Now he has no primary care since the last one said he didn't want Cory for his patient. He has his neuro but can't go without a referral.



Can anyone help me gain some insight as to what is going on with him. This is not fair. Can't doctors realize that he has problems. They run from him. I need to get him to a doc and then seeing his neuro on a schedule or I doubt he will ever get ssi. Like you Janice, I feel for my son because he has a terrible self image! God, I can't fix these issues alone. I need Cory to do what he needs to do in order to get the ssi.

Sarah - posted on 09/05/2012

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hi,

@Eileen (NC) Thanks for your advice .



Thanks to all.



@Patty Trausch

Although having plenty of sleep he shows behavioral problem. I don't know whether is this his theraputic dose doctors know it .



@Debbie

What meds do your son take ?

Patty - posted on 09/04/2012

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alot of the meds cause kids to have behavior issues because it causes moodiness. Are you making sure he is getting plenty of sleep every night? Has his meds been increased lately or is this his theraputic dose? That makes a big difference.

Debbie - posted on 09/04/2012

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yes it does. My son had epilepsy and was on meds for a year, He missed a lot of school and when he was at school, he became very aggressive or could not sit still in class. He was tired all the time and hated going to school. Thankfully got off the meds after a year and has not has any seizures for 5 yrs!

Eileen - posted on 09/01/2012

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Hi Sarah, I'm so sorry your family is going through this.



Many of your son's symptoms are consistent with a psychotic disorder such as bipolar disorder (very much tied with insomnia, paranoia, thinking your loved ones are strangers, "traveling" away from home). Bipolar disorder is a mood disorder, and some mood disorders are seasonal, as you describe his symptoms coming and going during certain seasons of the year. (not sure what the climate/seasonal changes might be in Bangladesh!)



I'm wondering if any of the medications he's taking are prescribed to deal with the psychiatric symptoms he is having? do you have any way to consult with a mental health specialist or neurologist who is interested in helping with this aspect of his life? It seems like he may have *psychotic symptoms (believing things that aren't true, sensing things that aren't real) as a product of his epilepsy or *a co-existing mental disorder basically independent of the epilepsy (as they say, you can have both ticks AND fleas!) and that either way, the psychotropic medications can be very helpful in reducing or eliminating these symptoms. Here in the U.S., even a general doctor (i.e. not a psychiatrist or neurologist) can prescribe psychotropic medications if they are comfortable doing so, and that's sometimes the only option in rural or underserved communities.



In terms of school, when possible I think all kids should be involved in multiple activities outside of the home that make them feel good about themselves. I would encourage you to help him continue to study unless he really hates it and unless it's unusual for a teen to be in school where you live. (does it make him feel more stigmatized or outcast?) Also to think of some other activity he can do - sports, artwork, volunteer work helping someone, a paid job part-time. Kids with mental and physical illnesses are at very high risk of having depression and low self-esteem. They often have a hard time at home and at school. A third "community," whether it's musicians or people who cleanup parks or working on a farm, can be very protective in helping them have a place where they feel useful and at peace.



I will be praying for you! don't give up on looking for solutions, every day we know more and more about the mysterious human body and spirit and that inbetween thing we call the mind....

F.A.S. - posted on 09/01/2012

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trileptal is a seizure medication and its supposed to have less side effects than some of the newer one my adopted son was having explosive episodes and they perscribed it for him hes been on it for yrs and it has worked fine

Sarah - posted on 08/29/2012

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Unbelievable! what the hell is this disease! A rare case of the world, subject of research...



Hi,



My son now age of 16 has been epilepsy since 6 years old. He has "Complex

partial epilepsy-cryptogenic behavior problem" diagnosed by neurologist.

During episode he stares at the sky for a certain amount of time.



But he has acute behavior problems. But this time a mysterious and

unbelievable behavior problem.





Now he is not recognizing his parents or family members. He is saying to

his parents that you are not my real parents, my real parents live

elsewhere.

So he goes outside of home alone although he does not have any money in

his pocket and he will be lost. He is so much excited that he cannot stay in

a place for a second and he is moving here and there all the time. At this

time he does not sleep at night. And this behavior problems are happening

for 10 years and we are so much tired and cannot tolerate anymore. If he

goes outside we will not find him cause he will not come back since he

thinks that it is not his home.



This is weird! What is going on his brain ?! It can be a subject of research



for the scientists.





Now what should we do?



He is now taking the following meds-



* Tab. Carbamazepine 500mg+0+500mg

* Tab. Frisium (Clobazam) 10mg 0+0+1

* Tab. Pyrodoxine 0+0+1



1. Tab. Olanzepine 10 mg 1+0+1

2.Tab. Procyclidine hydrochloride 5mg 1+0+1

3. Tab. Atomoxetine 10mg 1+0+0



Thanks to everyone, please pray for me.

Coree - posted on 08/21/2012

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Wow, its incredible what some of you women have gone through with side effects. Its truly heartbreaking! Thankfully, none of my 3 children have epilepsy. Although, myself I was diagnosed at 8 yrs old. I went through constant changes in meds, blood test , EEG's. As a kid it was terrible!! I had extremely bad memory that started when taking meds... When I was old enough I decided myself to refuse the meds, I was about 17/18. I hated them and what they did to me. When I was 19 I was pregnant with my 1st child. While I was pregnant my seizures seems to increase 10 fold. I went again to a specialist to figure out my options. I was flat out told that if I told meds while pregnant it would have side effects on my baby. He could be slower mentally. That intrigued me greatly! I also felt like i was getting "dumber" and couldn't explain it. He then said that is exactly what these meds do is slow down your brain as when it races that when seizures are triggered. I again decided against taking meds. luckily, after giving birth my seizures went away. I have been seizure free for 8 yrs. I only had petit mal. (absont seizures) but as just food for thought, meds are not always the answer. I am not trying to say anything about people who do medicate but as an after thought I wish I was never on them.

Lisa - posted on 08/18/2012

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check the medication the dr. has your child on and look on the list of side effects and you are going to find most likely that it does cause behavior problems in children.

Eileen - posted on 08/16/2012

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Hi, I'm a psychotherapist reading about epilepsy and behavior to better help a client. From what I've seen in the literature, some things are clear:
*people with epilepsy are more likely to have emotional, behavioral and learning problems, for several reasons;
*traditional medicine solutions for some comorbid conditions (psychosis, attention deficit) can relieve the symptoms of those conditions in people with epilepsy.

I'd also like to mention that as moms we have to advocate in the medical system and also there's a lot we can do at home as moms (non-medical interventions). My kid has a diagnosis other than epilepsy (ADD), but some of the things I had to do were: *learn to distinguish between him and the symptoms (he is not violent, he's that boy I love...) *find things we enjoy doing together and do a lot of them (cooking!!!! eating!!!!!); *get respite (friends who would spend an hour even with one of my kids to give me a minute with the others;) *educate myself *develop with him an awareness of the symptoms, a vocabulary to talk about them, what would predict or trigger them, and interventions that would stop the behavior and emotions from escalating. In his case, we both talk about his being "full of beans" or "jacked up"; being alone in his room or jumping on the trampoline or being outside or wrapping up in a soft blanket or taking a bath are calming. When he's getting agitated I keep him away from his siblings, reduce the demands on him, try to find something fun and distracting. Make sure he's not hungry or tired. We have had a couple of good talks about what to do with anger, and how often as humans we do things when angry that actually go against our interests - like mess up our own stuff, or fight with the mom who's not really the problem etc. It's OK to be angry, let's find a soccer ball to kick or a tree to throw eggs at instead of making everything worse. Make a really ugly picture of what's in your head, etc. The goal is, for him to be comfortable talking about his feelings and to eventually internalize positive ways of coping. Lots of praise when he does something well or just a little bit better than last time. Lots of discussion about his strengths and acknowledgement of his weaknesses.

Having a long family history of mental illness, that was often "swept up in the rug", I think it's so important that we help our kids be open, learn how to ask for and accept help gracefully, and love love love that big part of them that is lovable. Nine years ago my son was trying to suffocate his baby brother with a pillow and I thought he was going to be a sociopath. Now he is the sweetest and calmest kid you've met a great majority of the time. (although apparently he doesn't pay attention in english class, even when his medication helps with math and science!!!!) Every year gets better and I love who he's becoming. I truly think having overcome some issues makes him a more compassionate human being who appreciates things. Love him to death. Good luck with your kids, and remember to be hopeful... and recognize the good things as they happen.

Sandy - posted on 08/10/2012

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Hi Sarah,
I hope your son can get better with my advice. Joey is 13 and does have aggressiveness and anger issues but it's just with myself and my mom, in my moms house, where we live. Not his father or siblings who live else where, divorce. I can take him anywhere and he is fine but bring him home and he is Dr. Jekyl/Mr. Hyde. It's driving me crazy to the point that I have my own psyche doctor now. He is starting with a new psychologist and psychistrist in a couple weeks. I hope they can figure out why he tortures myself and my mom.

As for you getting your child care .... the Melatonin and Lecithin are on the shelf in stores. You may also be able to order them on www.drugstore.com. Please see if they ship to you, I just got some stuff from them and the service and price were good. You may also be able to order seizure drugs that way too. I would definitely try to get him on Trileptal and also Risperadone for the aggressiveness. Give him 3 - 6 mg. of Melatonin an hour before bedtime every night and he should sleep well every night. Don't just give it to him periodically. You want it in his system round the clock. May also help with his mood. Lecithin once a day can be his answer to stopping more seizures, if not all of them. It is an amazing supplement!!! As for having a great Neurologist??? You can learn more from me and other moms on the different drugs, tests and everything you can think of. You take our suggestions to his Neurologist and tell him that you want to change things around with his drugs, and add behavior drugs. You don't really need Neurologist 'permission' to do Melatonin and Lecithin since they are available without prescriptions. I wish you the best of luck and please let me know how he is doing and what you have tried. It helps me and all the other moms who read our posts!! God Bless!! Sandy Lora

Prince - posted on 08/10/2012

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Hi Sandy,
Thanks a lot for your great advices. You are a great mother and i can understand that you have passed a very bad time with your son like me. My son's seizure is now in control about one a month or two month. Now his major problems are aggressiveness and lack of sleep but not all the time. Sometimes he remains very well and sleeps well. Does your child have behavior problem or aggressiveness? I am from Bangladesh which is besides India, Asia. So i cannot take him to the world's best neurologists like in USA. But your suggestion will really help me. Thanks again.
Sarah

Sandy - posted on 08/10/2012

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Sarah ... He needs to change meds and probably doctors. Trileptal is a good seizure drug. My 13 year old has been on most of the drugs and Trileptal has been main drug for over 12 years. It is OXcarbazepine. My son also takes Concerta 54 mg. every morning which enables him to attend school full time. Regular and special needs classes. He takes 1 mg. Risperadone in an effort to control his aggressiveness which is only towards myself and my mother, who we live with. You should definitely give him at least 3 mg. of Melatonin (over the counter) an hour before bedtime. Melatonin puts the brain in a deep realm so he should sleep a deep uninterrupted sleep, hopefully with no seizures or any hallucinations or whatever all night long. I also give my son a 1200 mg. capsule of Lecithin (over the counter) once a day. Lecithin is for brain and nerve function. It helps stop most of my sons seizures. He was having at least one seizure a day and now he is having maybe one a month. Joey only has 40% of his right brain. Left brain removed in 2000, job somewhat completed in 2005 but he had a massive stroke in right frontal lobe and almost died. He recovered from the stroke but that part of his frontal lobe is dead. I hope you take the advice I have given you. I have been playing doctor for 13 years and have made life saving decisions. Sometimes mothers intuition is better than a doctor who sees the child once a month or so. Like I tell all of my Mom's and those I have counseled at Childrens Hospital in DC, through Joey's website and on here ..... you never know what will be the 'miracle' for your child, so you try it all. That is how I've taken my son through 6 brain surgeries, a stroke, almost the entire line of seizure drugs and decided to give him the Melatonin and then Lecithin. 30 -40 life threatening seizures a day in 2000 is now down to less than one a month!!! Try it!! God Bless and I hope you try my advice and have great results with it. Sandy Lora

Sarah - posted on 08/09/2012

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My son now age of 16 has been epilepsy since 6 years old. He has "Complex partial epilepsy -cryptogenic behavior problem" diagnosed by neurologist. During episode he does not fall down but stares at the sky for a certain amount of time. He becomes ill for a certain time about 2 months of the year but remain ok rest of the year. When he becomes ill then he becomes very aggressive beating family members, going out of home, very excited, does not sleep whole night, hallucination, delusion etc. in a word he becomes mad. After recovery he becomes normal and you cannot understand that he behaved like mad. First he took Valproic acid from age 7-11 but seizure was not in control. Then another doc gave him Epilim from age 11-14 but his behaviors problems were unchanged. So another doc gave Carbamazepine (Tegrital) He is now taking carbamazepine but still has behavior problems.

He is in 5th grade but he is now out of study. Decrease of performance. Can this kind of patient continue study? Does pressure of study at school worsen their behavior problems and seizure? Should we continue his study?

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