does epilepsy cause behavior problems???

Courtney - posted on 05/10/2013

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

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

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.

Michelle - posted on 12/16/2012

thank you sandy it is much appriciated as is all advice on this matter

Sandy - posted on 12/16/2012

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

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,

Sandy - posted on 12/15/2012

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

Michelle - posted on 12/15/2012

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

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

@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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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?

Sandy - posted on 08/05/2012

Suzanne ... you ought to try taking one 1200 mg. Lecithin every day. Over the counter. It has helped my now 13 year old son. When I first put him on it, he was seizure free for 7 3/4 months ... until puberty hit. He is now in more control with maybe once a month. He's also had the left brain removed when he was 17 months old. Changing doctors and meds was a great idea. Trileptal has been my sons main med since 17 months of age. Now with Vimpat added. Sandy Lora

Suzanne - posted on 08/05/2012

While I am NOT a Dr. I do have a seizure disorder and it crushes me to see or hear about small children having to deal with seizures, I was on a TRUCKLOAD of medications and still having break through seizures. And I AM NOT SUGGESTING YOUR CHILD TAKES THE SAME MEDICATION I DO. Yes they do play a BIG part in behavior and attitude. They made me feel like a nuisance to everyone and I am an adult. I have personally been on Dilantin, Topamax,Keppra, Trileptal, Zonogranm Lamactil, just to name a few. Then out of no where I decided to change my Dr. who decided to once again change my medication and after researching it and talking to my family, I finally (after a year of "thinking" it over) went from taking 6 medications a day and having at least 4 seizures a week ranging from "zoning" to full blown gran mals. Started taking FELBATOL (FELABAMATE) that made such a difference, I have finally been seizure FREE for the last 6 months! I do take 1200mg in the am 600mg at noon along with 300mg Trileptal and 1800mg at bedtime along with 650mg Trileptal But it is worth it not to be having annoying seizures. It has caused NO MOOD swings. No loss of appetite, I do have to do frequent blood tests to monitor my kidney function, but all seizure medication has side effects. You may want to ask your Dr about it. Best wishes

Marie - posted on 06/28/2012

My son 5 years old just recently got diagnosed with epilepsy and put on keppra and he bounced of the walls on it so weve had to take him of it as couldnt cope maybe you should mention to.your dr whats happening

Family - posted on 04/08/2012

Hi Luanne, I can't comment on the drugs as we had not had any experience with any of them. I have 2 sons that are epileptic. They are both treated by the same neurologist but they have not had the same frequency of tests nor have they had the same type. The younger (described above) has quite consistently had EEGs, video EEGs, 24 hour home telemetries and a two night stay in the hospital attached to EEG and being video taped, including the second night I had to keep in awake. he had some sort of EEG roughly every 6 to 9 months from the time he was 4, but his only MRI was done 3 years after diagnosis at the age of the 7. My oldest experienced his 1st seizure at 14 ( walking alone to school). He had an MRI the same day of his 1st seizure and an (sleep deprived) EEG 48 hours later. Since then, (2 1/2 years) he has seen the neurologist every 6/9 months but has only had 1 other regular EEG, in spite of having a cluster of tonic clonic seizures, 1 year after the first. You need to ask the neurologist about the Why behind his reluctance to test. Either you will learn something or you will know that you need to move on to a new doctor. (FYI, we're from Montreal, so our medical system is quite different from the States. I don't know if that is important with regards to which tests and at what frequency the tests are being done.)



Don't waste your energy trying to figure out what caused your child's condition. For the most part it isn't that important and you will make yourself crazy trying to figure out if some particular event was the catalysis. Even if it is connected to her birth, it's not as though you willfully did this to her. As far as it being genetic, yes, it can be, but not always. Since I had been epileptic as a child and out grew it, and 2 of my 3 children are epileptic, there is a strong possibility that for our family, the likely cause is linked to DNA. But any chromosome scanning that we do has more of a research interest then any importance to my children's treatment plans.



Guilt is a terrible thing that truly preys on us mothers! I know it is difficult but just try not to go there. Believe me, I question myself all the time as to how it took us 10 years to sort out that the behaviour issues that Patrick faces is due to Aspergers and not to side effects. (Which is not to say that he did not at times react badly to certain of his meds.) At bad moments I wonder about how much more effective any intervention could have/would have been if we caught it earlier. But how does that help me to help him now? All that I can do,(or all that any mother of a child with health issues) is to look at what can I do Today, Tomorrow.. to improve the situation.

Lynne

Sandy - posted on 04/08/2012

Luanne, Call several Neurologist's and explain the situation. I am sure you can get an appointment quicker that way. You could also request that the testing be done before you see the new Neurologist. Video EEG for a couple of days and an MRI are definitely needed. As for the Zonanisamide ... that drug was horrible for my son. He participated in the drug study before it was approved and he became a violent, aggressive and I dropped that drug like a hot potato. I did not wean him. I stopped giving it to him. All of these drugs have potential side affects that range from mild to horrible. If you stay on Zonanisamide, you may need to add a second drug to contain her breakthroughs. My son is on Trileptal (for 12 years) and we now have Vimpat as a secondary. For attention in school we use 54 mg. of Concerta. For behavior we use 2 mg of Risperadone, twice a day. He seems to be doing well in 6th grade. You also need teachers who assist you in your daughters care. Work together. Good luck. Sandy Lora

Luanne - posted on 04/08/2012

My daughter started with absence seizures in 2nd grade. They were supposed to go away. She started having gran mal seizures at 11 years old. She is 13 turning 14 in September and she is having some type of break through seizures at school. I have requested some brain testing and for some reason the doctor doesn't want to order and tests. She has not had a brain scan since 2nd grade. I am going for a 2nd opinion but everyone knows how long it takes to get in with a new neurologist. She has a lot of negative behavior problems. I did not realize she had problems at school because the teachers did not notice it. I feel guilty as this is supposed to be hereditary. Nobody on either side has had epilepsy. I wonder if it had something to do with me not being able to get her out when I was in delivery. She was vacuumed out. What do you think? She is on zonisimide. A few months ago she was having a gran mal seizure every week so the doctor uped her zonisimide. No gran mals recently (as of 3 months) but having the break through ones at school. I hate this illness.

Family - posted on 04/07/2012

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).

Sandy - posted on 03/31/2012

Hi Karen .... you may want to try concerta for his concentration. It has been great for my son, especially in school.

Sandy Lora

Karen - posted on 03/31/2012

the meds and the seizures can do this. My son is 6 and on trileptal he also has complex partial and poss. absence. when we added keppra for better control he became very aggressive-and moody/depressed. He also has trouble with concentration short term memory and auditory processing. I would def. talk with the doc about the keppra I have heard from many parents it made their kids aggressive. good luck!

Jamie - posted on 03/23/2012

Keppra can cause mood issues..tell ur doctor and see if they can try something else..Epilepsy usually doesnt cause anger issues....its the meds.

Sandy - posted on 03/21/2012

Natalie .... Keppra is evil to most people, young and old. There are many other seizure drugs to try. Trileptal has been my sons main drug for 12 years. Vimpat added and I think it's helping as a combo. It's not good for a child to be irritable because of a drug. Life is hard enough on them with seizures. You tell the doctor that you want it changed. It's your child and your decision!! Good luck. Sandy Lora

Kristin - posted on 03/21/2012

no epilepsy doesn't cause behavior problems mix of medicines could have a big effect look at medicines and get with pharmacist and see if the meds should be taken together sometimes meds can counter react people

Natalie - posted on 03/18/2012

hello, i have just joined and read your post!!! my son was diagnosed 12 months ago after one colonic fit at 4.30 am. After 2 other medications hes now on Keppra ( 1000mg per day) . His behavior is awful too!! But like you i have no idea whether its his age, condition or medication???? its very very frustrating and worrying .

Yo - posted on 12/26/2011

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

Amanda - posted on 11/27/2011

yes side effect of keppra is irratablity you can talk to your nourologist and get b6 prescribe to help with the irratableness. my daughter is on keppra b6 and melation to help with sleep. although I'm not sure if it would effect boys the same way as girls. good question to bring up with the dr though.

Sandy - posted on 10/29/2011

Luanne .... get her off of the zonisimde now!!! It has horrible violent side affects!! My son did the study for it before it was approved and he turned into a monster!! He was only 4 years old or so. It is the worst drug my son has ever been on!! Try Trileptal, Vimpat ... anything but just get her off the Zonisimide immediately!! Good luck!
Sandy Lora

Luanne - posted on 10/29/2011

Did you find out anything? I have the same problem with my 13 year old daughter. She takes zonisimide for seizures and she is impossible to deal with. She has anger issues and is always fighting with her 11 year old sister....even hitting. I am going through a divorce and I am in couseling but it is not helping. Does the zonisimide make her more angry and moody? Please help. I will cry and she does not even care.

Michelle - posted on 10/29/2011

Hi Kelly,
My son also developed epilepsy as a result of encephalitis. He was 4 1/2 when he acquired encephalitis and developed epilepsy a little over a year later. Behavior for us was affected - not sure how much was related from the impact of the encephalitis and how much to all the activity in his brain while he was having in his sleep. His EEG showed a lot of nighttime activity and he often woke several times a night. The doctor put him on lamictal and this really helped him. Has been seizure free for almost 2 years and his behavior improved dramatically.
How often does your son have seizures? Have they considered lamictal?

Kimberly - posted on 10/25/2011

I know this post was posted a long time ago but I just rejoined this group and saw it...My son is about to be 7 and he has had epilepsy since he was 2. They have been trial and error drug changes constantly cause of the behavoir problems. He jsut started Concerta and Intuniv which are both ADHD meds but are safe for children with epilepsy and they have changed him dramatically. He is like a new child, mind you he is still a boy so he still has that "BOY" attitude and behavior problems. If ya need to talk more about anything like this just message me on facebook or whatever and I hope you figure out something to help you cause I know as a mother it is very tiring on yourself.

Kristin - posted on 09/08/2011

i have complex partial seizures too never heard of the eplim
im on keppra and lamictal when i got pregnant with my daughter i was on depakote and they took me off that in a hurry i was wondering if the med i was on while pregnat could have caused some of my daughters behavior