New to Keppra...need help!

Annette - posted on 07/16/2009 ( 12 moms have responded )

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My 6 year old son started Keppra 3 days ago. I need to understand what type of emotional responses you have seen in your child. My son DOES NOT TALK, he makes NO ATTEMPT at talking or trying to get me to understand what he wants or what is going on.



He has been crying for almost 2 hours, this is unusual for him. I am sure it is the Keppra, but I wonder what your son or daughter has said during an emotional period on this medication. It's next to impossible to say what is upsetting him but I need to know what other children have expressed. Please, any and all stories are welcome!



NOTE: We have NO intention of removing him from it, he was having clusters of T/C that were over 3 minutes each, the Keppra brought him out of it. So please, be constructive and thanks!

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Kris - posted on 07/27/2009

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Back on July 17, I reported my son having no seizures snce increase on Keppra. He had 3 with in the last 36 hours. He is 10 yrs old, and was diagnosised with partial complex seizures when he was 5 yrs. He is currently taking Depakote 1500mg daily, Lamictol 100mg daily, and Keppra 1500mg daily. He is going into the hospital for 5 day video EEG, the neurlogist wants to see if he is a canidate for brain surgery, or VNS (vagus nerve stimulator). They will strip him of all meds and sleep deprive him while in hospital. Before comeing home, they want him on 3000mg of Keppra, and start him on Felbatol. He has several seizures a week still, but hopeful something will work, and he will lead a noral productive life. He is very delayed with comunication, and is relearning to read and write. He is about 5 to 6 yrs delayed. Since on Keppra, he has been more delayed, but he went a month and 5 days with No seizures. Hopeing when the Keppra is his primary med, and he is off the others, it will work better and with fewer side effect. I also have started him on B6 today.

Deann - posted on 07/27/2009

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My daughter is 5 and I just (2 weeks ago) took her off Keppra. At 3 she started having absence/atonic seizures about every 5 minutes. She has been on Depakote, Zonegran, Lamictal in which she is still on because this med. made her atonic seizures go away, and Keppra. Keppra seemed to make her more cognitive, though the seizures were still occurring but with longer time between them. Instead of having 200 seizures a day she went down to about 50-60. My neurologists also recommended Vitamin B6 because Keppra was making her very agitated and moody (we think). She is also non verbal, but she began to throw items, head butt, hit, kick, bite herself until she would bleed. I did not notice any change with B6 but this may be because I could only find tablet form and would have to break it up to put on food and because she is picky, I ended the B6. I also noticed that her sleep pattern changed when the med was upped. It was like she was crawling in her own skin and could not be comfortable, she would shriek with laughter one minute and start crying the next. This past week the neuro took her off the Keppra and put her on Benzol which is a newer med. that has just been approved by insurance companies.

Hope this helps.

[deleted account]

My 4 y.o. son has been on Kepra for almost two years now. I have had nothing but a positive experience with him. After being on it only three weeks he started talking. At 2 1/2 he was completely non-verbal and within two months he had almost caught up to age appropriate. My son's emotional anyways because of frontal lobe problems so I didn't see a difference until we upped his dosage from 4ml to 5ml. OMG he became extremely violent. In fact he attacked his sister while she was sleeping and tried to choke his younger brother. As long as he stays at the 4ml he's wonderful.



A friend of mine, her daughter was the first child to be put on Keppra. She was emotional for the first two weeks and then it went away. She was on it for years until she hit puberty.





Now puberty and Keppra is a diferent thing. Oh boy it can bring out major behaviors in kids in puberty. My oldest son had to be taken off of it once puberty set in because he became violent.

Annette - posted on 07/27/2009

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Thank you all so very much! You are wonderful Moms and heaven sent.



Bug was doing better, his moodiness has decreased but last night he had a set of seizures that have me pretty darn bummed at the moment. I know it happens, but you know that hope we get when things are different, well, ya, it's gone and I need to move on. He is still a happy, sweet child, it's so hard to teach him not to slap when he is upset, or when he is frustrated, which is almost all the time since he doesn't speak. No idea why, he just can't. It's very frustrating but I find I have become a bit psychic with what he wants. :)



Again, thank you all! I will be getting the B6 tincture today or tomorrow. Although, I am not gonna hold my breath. The last time we did a B therapy his seizures got worse. But that was a multi, so the B6 only might be a help for him.



I adore that you all answered, I can not thank you enough. It's good to have people who understand. Our world is a little brighter.

Libby - posted on 07/23/2009

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My son is younger than yours, only almost two this September. We started Keppra two or three months ago and it was a life-changer. And not because it stopped his seizures, but because of the way it effected his mood. Like you were saying your son was crying for two hours which was unusual, that's the same kind of thing that happened with my son. He was such a jovial child, even since birth. Super-social and happy, even when he was sick. But all of the sudden he was irritable all of the time and upset. I assumed it was from the Keppra, because I had heard of this side effect, but I was constantly amazed at how bad it was. I felt like I had lost my son. Some people said that it took a month or so for their child to get used to it, so I held out and waited.... but nothing changed. I, like others, had heard of B6 through the circle of moms and asked my neurologist about it. They prescribed it and he's been taking it for about a week and a half. The first few days, I saw no change. But after that, he was so different. Back to his normal, happy self. I'm not saying he doesn't have normal two year old tantrums, but not the kind of abnormal things he was having before. I feel like for the first time in months I'm able to calm down! He used to cry everywhere we went, whatever we did. Now we can play on the floor, I can even wash dishes, and he doesn't scream or roll on the floor!

Tracey - posted on 07/23/2009

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My son who is 5 1/2 has been on Keppra for 14 months and the first and a half month was a nightmare in regards to tantrums but once his body got regulated they calmed down (he's currently on 3 ml twice a day which I understand is almost at the max for his weight). Before the Keppra, when he had seizures, his tantrums would last two minutes top becasue he would seize and then forget that he was having a tantrum. For the first month (and every time we've increased it), he has violent tantrums that can last up to 2 plus hours and then be fine. We started identifying situations that might trigger these to avoid it happening (especially when we were in public).

By the way, I have heard that the mood swings and tantrums are more severe if you start from nothing to a full dose since it catches the body off guard. Our neurologist weaned our son onto it over the course of 4 weeks so I'm glad that it wasn't worse. When we increase the Keppra, we see an influx in tantrums where I just need to hold him for 30 minutes or longer (so he doesn't hurt himself, break something, or run out the door). However, once our son gets regulated from the new dosage, he is back to having normal 5 minute pre-schooler tantrums that we can talk him out of but otherwise, he's now a very happy child.

Because the Keppra is working with his seizures and he is now catching up on all of his developmental and speech delays, the tantrums are a small, yet frustrating, price to pay. They do mellow out so hang in there.

Beth - posted on 07/22/2009

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My dd was diagnosed with epilepsy in 2004 at the age of 4. She has only ever been on Keppra. It does a very good job keeping her seizures under control. She does have "break through" seizures usually every 4-8 months but we are willing to deal with them because we do not want to put her on anything stronger as we worry about side affects that some of the other meds can cause. Keppra is the "more mild" choice, so we've been told. The only emotional problems that we have ever noticed with her are mood swings. Her neurologist has her taking Keppra and 100 mg of Vitamin B6 (50 at night and 50 in the morning). It seems to have helped a little...still have the mood swings but they do not seem as severe. Other than that, we have never had any other side affects from the Keppra. I hope that this is helpful and if you need to know anything else, I am here. My email is: tmeak@cebridge.net or you can send me a message through Facebook. God Bless and good luck to you! Elizabeth Kohler

Holly - posted on 07/21/2009

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I should have also noted that we have had a lot of success w/ Keppra. We will go almost a month w/o a seizure until he gains weight and it needs to be adjusted again.

Holly - posted on 07/21/2009

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My son is 2 and has been on Keppra 7 months. I learned of B6 through Circle of Moms. Its true and helped w/ my son within 7-10 days. I added it just by given a liquid multivitamin you get over the counter. I am interested if anyone can tell me what other forms other than tablet forms are there?

Heather - posted on 07/20/2009

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Keppra's a hard one. My son, Jacob has been on that and Topamax for awhile. With Keppra we've found a lot of mood swings. shrieking w laughter one moment to crying hysterically the next within 10 mins. We've found it can last 2-4wks after, depending on the increase in dosage. We hang in there knowing it will end eventually, and it's best for him in the long run. Try the B6. We've done that as well and had good results. Really helps regulate the mood swings- not sure why, but I'm not going to argue. Also, FYI, Keppra went generic about 6 mths ago, Jacob went on it and started having breakthrough sz and NASTY mood swings. I canned the neuro and apparently this was happening to a lot of kids- something to do with the generic formula and the way it's made. Doesn't effect everyone, so just an FYI. Try the B6! Hang in there!

Kris - posted on 07/17/2009

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The only side effects I have noticed is more of a delay in expressing thoughts and feelings, cognative ability. My 10 yrs old son is also slow to process anything said, so I have to have extreme patience. We will be talking, and he wont respond, but about 2-3 minutes later, he has an answer, again, extreme patience. He also can be emotional, but alot more controlled now then when first on Keppra.He has only been on it since March, started with 1000mg a day, and increased to 1500mg a day, about 3 weeks ago. Since increase, NO seizures. He is on a combination of 3 meds at this time. Since Keppra introduced, the side effects are as I stated above. He had his first seizure at the age of 5, and currently still actively having mulitple a week, again since increase 3 weeks ago, NONE.

Samantha - posted on 07/17/2009

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We tried Keppra for about 12 months, our neuro advised us to give a Vitamin B6 supplement in conjunction with the Keppra, to help with moods and behaviour. I cant really comment on moods etc, my little one cant communicate thoughts/feelings, I thought it may have affected her behaviour in a negative way, but after being off it for a couple of months she is still the same little adorable monster!

Beth - posted on 07/22/2009

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My dd was diagnosed with epilepsy in 2004 at the age of 4. She has only ever been on Keppra. It does a very good job keeping her seizures under control. She does have "break through" seizures usually every 4-8 months but we are willing to deal with them because we do not want to put her on anything stronger as we worry about side affects that some of the other meds can cause. Keppra is the "more mild" choice, so we've been told. The only emotional problems that we have ever noticed with her are mood swings. Her neurologist has her taking Keppra and 100 mg of Vitamin B6 (50 at night and 50 in the morning). It seems to have helped a little...still have the mood swings but they do not seem as severe. Other than that, we have never had any other side affects from the Keppra. I hope that this is helpful and if you need to know anything else, I am here. My email is: tmeak@cebridge.net or you can send me a message through Facebook. God Bless and good luck to you! Elizabeth Kohler

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