Mood and Behaviour changes

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Hello everyone!

I am writing because I am trying to figure out what's going on with my son. He is 9 years old and is taking 375 mg of Keppra XR per day for left temporal lobe epilepsy with complex partial seizures. He has been on Keppra for close to 5 months and we've been noticing emotional, mood and behaviour changes that fluctuate so much throughout the day. He's previously taken carbamazepine and lamictal. He was never an emotional or a child who had "bad" behaviours before his diagnosis. He was always pretty laid back and easy going but recently (in the last few weeks), he goes from being withdrawn and needing his space, to really hyper and picking on his little brother and sister (which he never did before), to crying about things that don't make sense, to being easily irritated. He seems to have a lack of interest in most things (including Disneyland!) and his anxiety is at an all time high. He becomes obsessive about things like snakes and tornadoes and will refuse to go outside in the unlikely event he will come across a snake (has never happened) or if the weather changes, he's constantly checking the skies for any sign of a tornado (again, never happened) - and these are only a few. Sorry if this seems really choppy, just trying to fit as much as I can in. I'm not really sure if it's his epilepsy, a medication side effect or if I'm just reading too much into it and he's just developing into a "pre teen". I hate talking to his doctors because we've seen 4 throughout our journey and none of them have a clear idea of what is going on with him and all have different and very drastic opinions of what is going on with him and they all make me feel like I'm over reacting although I feel like I know my children the best - ecspecially when it comes to behaviour and moods. Do any of you have any insight? Any help would be greatly appreciated!

Comments

Re: Mood and Behaviour changes

Submitted by mpmedia on Sun, 2013-05-05 - 23:10

Same here.... I am so upset... Nervous.... and not quite sure what to do. My Son, now 8, was diagnosed with a seizure disorder about 1 year ago - GEF+ which the Dr. believe he should outgrow. First we put him on Depakote - it didn't work for him. Then, he was on 5ml Keppra (100MG) twice a day and 1/2 teaspoon liquid B6. It worked at the beginning for about 8 months (although I definitely felt a big change in his behavior - He is the sweetest most gentle boy, now changed to a more aggressive, easily agitated not focused), at the beginning he was on Brand name, but due to insurance pressure we changed to generic. It worked fine for a while but then a week ago it stopped working. He had so many absence seizures during the day, I was really nervous. We had to switch medication. We tried Topmax, he got a rush all over his body and looked as if he was wasted and totally out of it. He had a loss of memory and a real tough time remembering any basic math facts he knew beforehand and the Seizures continued. I even asked him for his birthday, and he couldn't tell me. We took him off the Topamax immediately and now he is back on the Keppra, Brand name this time, 9ml twice a day. It seems like the seizures are almost completely gone, but his behavior is out of control! please help... we are running out of options. I AM SO STRESSED OUT!! Starting to think about other options.... Any advise, suggestions or just want to share.... You can email to me mpmedia@optonline.net

Re: Mood and Behaviour changes

Submitted by atchristianson on Mon, 2013-05-06 - 01:00

Thanks everyone for your insight. I did contact his neurologist and they reduced his meds in half to see if that works, but his meds have already been decreased previously because he became so tired on Keppra he couldn't even function. Hopefully it works but it is definitely scary to see him on half a pill twice a day. We will be hearing tomorrow when he goes for his evaluation to the children's hospital and I'll keep you all updated.

In response to mpmedia, I can relate to most of everything you're saying. My son had the same side effects on Tegretol/Carbamazepine and Lamictal. He would use a math strategy for 10 questions and then the last 2 questions, he'd totally forget the strategy and couldn't get a grasp on the basic math facts. He had gray face, told me he wished he was never born and wished he would just die, he couldn't control his bladder or bowels, he couldn't remember things that happened a few minutes before, he couldn't even balance or focus - he looked like a walking zombie and we found out that his body was "toxic" and his heart was being constricted by those meds so we took him off and were leery to try anything else so we kept him off meds for 8 months. Then the seizures came back. Hence why we are now on Keppra. Keppra seemed to be really good at first other than the tiredness. We noticed he was a lot more focused and a bit aggressive but almost in a positive way as he had a tendency to be really passive in the past. As the months have gone on, we've seen these mood swings, irritability, purposely making his sister cry, being sad and depressed about things that have never upset him before. Physically, he is doing much better on Keppra than any of the other meds we've tried other than his white blood cell count is a little low, but emotionally, it is really hard on him and it worries me that he is so overly emotional and he's really at what I feel is a "pivotal" age. If you're crying about little things in Kindergarten, no one will really remember but when you're heading into grade 4, I feel like it's something kids will remember and it might follow him even if he does outgrow his epilepsy.

Thanks MariBS, at his evaluation I will ask if there is anything he can take to "counteract" the mood swings!

I really appreciate all of your input! Epilepsy is a hard disease to cope with sometimes. Just when you think you have everything under control, it pulls the rug out from underneath you. There is so many unknowns but I guess you just deal with it as it comes.

Thanks everyone for your insight. I did contact his neurologist and they reduced his meds in half to see if that works, but his meds have already been decreased previously because he became so tired on Keppra he couldn't even function. Hopefully it works but it is definitely scary to see him on half a pill twice a day. We will be hearing tomorrow when he goes for his evaluation to the children's hospital and I'll keep you all updated.   In response to mpmedia, I can relate to most of everything you're saying. My son had the same side effects on Tegretol/Carbamazepine and Lamictal. He would use a math strategy for 10 questions and then the last 2 questions, he'd totally forget the strategy and couldn't get a grasp on the basic math facts. He had gray face, told me he wished he was never born and wished he would just die, he couldn't control his bladder or bowels, he couldn't remember things that happened a few minutes before, he couldn't even balance or focus - he looked like a walking zombie and we found out that his body was "toxic" and his heart was being constricted by those meds so we took him off and were leery to try anything else so we kept him off meds for 8 months. Then the seizures came back. Hence why we are now on Keppra. Keppra seemed to be really good at first other than the tiredness. We noticed he was a lot more focused and a bit aggressive but almost in a positive way as he had a tendency to be really passive in the past. As the months have gone on, we've seen these mood swings, irritability, purposely making his sister cry, being sad and depressed about things that have never upset him before. Physically, he is doing much better on Keppra than any of the other meds we've tried other than his white blood cell count is a little low, but emotionally, it is really hard on him and it worries me that he is so overly emotional and he's really at what I feel is a "pivotal" age. If you're crying about little things in Kindergarten, no one will really remember but when you're heading into grade 4, I feel like it's something kids will remember and it might follow him even if he does outgrow his epilepsy.   Thanks MariBS, at his evaluation I will ask if there is anything he can take to "counteract" the mood swings!   I really appreciate all of your input! Epilepsy is a hard disease to cope with sometimes. Just when you think you have everything under control, it pulls the rug out from underneath you. There is so many unknowns but I guess you just deal with it as it comes.       

Thanks everyone for your insight. I did contact his neurologist and they reduced his meds in half to see if that works, but his meds have already been decreased previously because he became so tired on Keppra he couldn't even function. Hopefully it works but it is definitely scary to see him on half a pill twice a day. We will be hearing tomorrow when he goes for his evaluation to the children's hospital and I'll keep you all updated.

In response to mpmedia, I can relate to most of everything you're saying. My son had the same side effects on Tegretol/Carbamazepine and Lamictal. He would use a math strategy for 10 questions and then the last 2 questions, he'd totally forget the strategy and couldn't get a grasp on the basic math facts. He had gray face, told me he wished he was never born and wished he would just die, he couldn't control his bladder or bowels, he couldn't remember things that happened a few minutes before, he couldn't even balance or focus - he looked like a walking zombie and we found out that his body was "toxic" and his heart was being constricted by those meds so we took him off and were leery to try anything else so we kept him off meds for 8 months. Then the seizures came back. Hence why we are now on Keppra. Keppra seemed to be really good at first other than the tiredness. We noticed he was a lot more focused and a bit aggressive but almost in a positive way as he had a tendency to be really passive in the past. As the months have gone on, we've seen these mood swings, irritability, purposely making his sister cry, being sad and depressed about things that have never upset him before. Physically, he is doing much better on Keppra than any of the other meds we've tried other than his white blood cell count is a little low, but emotionally, it is really hard on him and it worries me that he is so overly emotional and he's really at what I feel is a "pivotal" age. If you're crying about little things in Kindergarten, no one will really remember but when you're heading into grade 4, I feel like it's something kids will remember and it might follow him even if he does outgrow his epilepsy.

Thanks MariBS, at his evaluation I will ask if there is anything he can take to "counteract" the mood swings!

I really appreciate all of your input! Epilepsy is a hard disease to cope with sometimes. Just when you think you have everything under control, it pulls the rug out from underneath you. There is so many unknowns but I guess you just deal with it as it comes.

Mood and Behaviour changes

Comments

Re: Mood and Behaviour changes

Submitted by mpmedia on Sun, 2013-05-05 - 23:10

Re: Mood and Behaviour changes

Submitted by atchristianson on Mon, 2013-05-06 - 01:00

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