My daughter 11 has had temporal lobe seizures since she was 2.5. We did the EEG and the MRI @ Childrens hospital San Diego in 2003 and again this fall. We were just told that it could be a benign tumor causing the seizures. She was originally on tegratol and seizure free for 2 years and we much later found out that she was on an adult dose. So we weaned her off the meds then started her on topamax about 2 months later after all the tegratol was out of her system and she began seizing again. Topamax was causing her to lose weight and she couldn't remember her own name. She was put on lamictal about 3 years ago and did pretty good on it for about a year then she began having breakthrough seizures so we started increasing the dose. Just in the last month the doctors increased her to 300mg 2 x daily and she could not tolerate that. She was terribly ill from it. So we backed her down to 200mg 2x daily and added keppra. She is being started on a 500mg 1x daily dose to be increased to 1000mg 2x daily. My question here is does anyone have a child on Keppra and what are the mood swings like and does it make them really tired? She's only been on it for 2 days but I already notice a difference. Small, but it's there. Also, she's sleeping for more than 12 hours on the smallest dose. It's just knocking her out. I am not sure how to get her up for school tomorrow morning. Thank you in advance for your thoughts.
Newbie with questions about Keppra
- Thread starter Mlrisser
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dragonlady1978
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My son has been on Keppra for about 10 weeks now. It has never made him sleepy but I have read others' experiences saying that they did experience that side effect. He is also on Trileptal and that did make him sleepy, but if it's any consolation in many cases that can wear off after a month or so....it did for us.
Keppra did cause Hunter to have severe mood swings, both depressive and angry. After reading that it helped lots of others, I started him on B6 along with a multivitamin. It still happens, but it has made a significant difference in both the frequency and severity of the mood swings.
The mood swings were depression and anger, and he is normally a very loving and happy child (Hunter is 5 yrs old). By day two he began having these episodes several times a day, they'd happen for no apparent reason. He'd get so mad he would throw a fit, say bad words and mean things, throw toys, etc. Other times he would get very sad and say we didn't love him, or that he wanted to hurt himself or run away. When it hits there is no consoling or calming him, we just had to wait it out and it would disappear as fast as it hit. Afterwards he'd sometimes even apologize or act embarrassed.
Now the episodes are only about twice a week. I can't say that it is entirely the B6 or he is just getting more tolerant of the side effects since I only waited about 10 days in to start the supplements, but from what others say I can only assume that it should mostly be attributed to the vitamins.
If it weren't for the fact that Keppra almost immediately offered excellent seizure control the mood swings there is no way we'd have kept him on it and tried to make it work. We've tried several others that he didn't do well on either for other reasons....like really bad tremors and coordination issues, or even causing more seizures rather than controlling them.
Mood swings with Keppra are a common side effect, but that doesn't mean it's not possible your daughter would fare well on it. You've been going through this for a long time, so I don't have to tell you that it's a matter of trial and error. I still consider it a work in progress and will be adjusting B6 as I can discuss it further with our neuro, but I already consider it a large improvement and enough to make it feasible to continue with Keppra.
You didn't say whether or not your daughter is getting good seizure control yet from the Keppra....perhaps going up on the dose might not be necessary? Our neuro gave us orders to go half his maintenance dose for the first week and then double, but we ended up meeting in the middle because he got great and continued seizure control without having to go that high. In any case I'd definitely talk to her doctor and express your concerns, and maybe ask about what might help
Keppra did cause Hunter to have severe mood swings, both depressive and angry. After reading that it helped lots of others, I started him on B6 along with a multivitamin. It still happens, but it has made a significant difference in both the frequency and severity of the mood swings.
The mood swings were depression and anger, and he is normally a very loving and happy child (Hunter is 5 yrs old). By day two he began having these episodes several times a day, they'd happen for no apparent reason. He'd get so mad he would throw a fit, say bad words and mean things, throw toys, etc. Other times he would get very sad and say we didn't love him, or that he wanted to hurt himself or run away. When it hits there is no consoling or calming him, we just had to wait it out and it would disappear as fast as it hit. Afterwards he'd sometimes even apologize or act embarrassed.
Now the episodes are only about twice a week. I can't say that it is entirely the B6 or he is just getting more tolerant of the side effects since I only waited about 10 days in to start the supplements, but from what others say I can only assume that it should mostly be attributed to the vitamins.
If it weren't for the fact that Keppra almost immediately offered excellent seizure control the mood swings there is no way we'd have kept him on it and tried to make it work. We've tried several others that he didn't do well on either for other reasons....like really bad tremors and coordination issues, or even causing more seizures rather than controlling them.
Mood swings with Keppra are a common side effect, but that doesn't mean it's not possible your daughter would fare well on it. You've been going through this for a long time, so I don't have to tell you that it's a matter of trial and error. I still consider it a work in progress and will be adjusting B6 as I can discuss it further with our neuro, but I already consider it a large improvement and enough to make it feasible to continue with Keppra.
You didn't say whether or not your daughter is getting good seizure control yet from the Keppra....perhaps going up on the dose might not be necessary? Our neuro gave us orders to go half his maintenance dose for the first week and then double, but we ended up meeting in the middle because he got great and continued seizure control without having to go that high. In any case I'd definitely talk to her doctor and express your concerns, and maybe ask about what might help
Endless
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I'm so sorry your daughter is struggling with her medications.
I'm an adult that was on Keppra, and I had mood swings and was really tired. The mood swings ranged from anger to depression. I was so tired I could hardly function. These are pretty common side effects of Keppra, for an adult or child.
Here's a great website where you can look up what patients have to say about their specific medications: www.askapatient.com
I've found that combining drugs does something different to me than just one drug alone. It could be the keppra plus lamictal is making her even tireder than she would be on one drug alone. Lamictal makes me feel speedy, but trileptal made me tired, and they didn't average themselves out. I just felt tired all the time. Now on one drug (lamictal) it's like being on speed, and I can't sleep, and am exhausted and all sorts of other stuff from sleep deprivation. Some people report being just as tired on Lamictal as they are on any other AED.
Do you keep a seizure diary for your daughter? It helps sort out dosages, side effects, possible seizure triggers, etc. Here's a string that has a bunch of seizure diary tools:
http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/
Good luck. Will you let us know how she is feeling as you adjust her meds?
I'm an adult that was on Keppra, and I had mood swings and was really tired. The mood swings ranged from anger to depression. I was so tired I could hardly function. These are pretty common side effects of Keppra, for an adult or child.
Here's a great website where you can look up what patients have to say about their specific medications: www.askapatient.com
I've found that combining drugs does something different to me than just one drug alone. It could be the keppra plus lamictal is making her even tireder than she would be on one drug alone. Lamictal makes me feel speedy, but trileptal made me tired, and they didn't average themselves out. I just felt tired all the time. Now on one drug (lamictal) it's like being on speed, and I can't sleep, and am exhausted and all sorts of other stuff from sleep deprivation. Some people report being just as tired on Lamictal as they are on any other AED.
Do you keep a seizure diary for your daughter? It helps sort out dosages, side effects, possible seizure triggers, etc. Here's a string that has a bunch of seizure diary tools:
http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/
Good luck. Will you let us know how she is feeling as you adjust her meds?
Thank you for the suggestions, so far I haven't seen any seizures after being on the Keppra but she's only been on it since Friday night. I pray it works. I did ask the neurologist today if we could keep her at a lower dose as long as it's working and she said no that she'd require 2000mg daily to keep her from having another "crisis" she was not under control at all before the Keppra. She had 7 seizures between 11:30 pm last Sunday night and 1:00 pm last Monday afternoon. This was with 1mg Ativan in her in addition to her 300 mg lamictal that evening and her morning meds. She's a moody child anyway so I am more concerned about the mood swings and being tired than anything else. She's been prone to meltdowns as I call them all her life, where they can last for hours and she just spews venom when she has them so amplifying them scares the hell out of me. Also, she loves her sleep and I am concerned about getting her up in the mornings for school. That could be a challenge, she's hard enough to get out of bed in the mornings without anything making her tired. All I can do is wait and see, if it gets too bad I will talk to the doctor and try something else. But we did get some news today from the neurosurgeon @ Children's hospital. He doesn't think it's a tumor. I don't know if it's good news or bad news but it's news.
travel bug
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Hi Mlrisser,
Bless your daughter's heart, she's been through so much.
You wrote that the doctors suspected your daughter had a brain tumor, then you were told that the neurosurgeon didn't agree. Have you thought about getting another opinion? UCLA Medical Center and the University of California at San Francisco both have major brain tumor centers with excellent reputations. Sometimes you can just send records and copies of MRI's for review without actually having to go yourself, but I'm not sure if UCLA or UCSF do that. But anyway, it can be useful to talk to someone who deals with brain tumors every day. And because you said your daughter has always been moody which is sometimes a symptom of a tumor it might be a good idea to get the opinion of a BT expert. Brain tumors are relatively rare and even doctors in top hospitals may not see them often enough to be truly experienced. As scary as the idea of a brain tumor is, it would be better to know for sure so that treatment could be started as soon as possible if needed. Children are successfully treated for tumors all the time.
I have a brain tumor, a low grade glioma, and though little of it could be safely removed, I still have a pretty good prognosis. Children usually have different sorts of tumors than adults, and the good news is that pediatric tumors are often more treatable.
Anyway, I hope I didn't add to the fear and confusion you are bound to be feeling right now. I just wanted to say that, when it comes to the possibility of a bt, a second or third opinion is usually a good idea. And also, that as scary as the idea of a brain tumor is, they are often quite treatable, especially in children.
All the best to you and your daughter
Bless your daughter's heart, she's been through so much.
You wrote that the doctors suspected your daughter had a brain tumor, then you were told that the neurosurgeon didn't agree. Have you thought about getting another opinion? UCLA Medical Center and the University of California at San Francisco both have major brain tumor centers with excellent reputations. Sometimes you can just send records and copies of MRI's for review without actually having to go yourself, but I'm not sure if UCLA or UCSF do that. But anyway, it can be useful to talk to someone who deals with brain tumors every day. And because you said your daughter has always been moody which is sometimes a symptom of a tumor it might be a good idea to get the opinion of a BT expert. Brain tumors are relatively rare and even doctors in top hospitals may not see them often enough to be truly experienced. As scary as the idea of a brain tumor is, it would be better to know for sure so that treatment could be started as soon as possible if needed. Children are successfully treated for tumors all the time.
I have a brain tumor, a low grade glioma, and though little of it could be safely removed, I still have a pretty good prognosis. Children usually have different sorts of tumors than adults, and the good news is that pediatric tumors are often more treatable.
Anyway, I hope I didn't add to the fear and confusion you are bound to be feeling right now. I just wanted to say that, when it comes to the possibility of a bt, a second or third opinion is usually a good idea. And also, that as scary as the idea of a brain tumor is, they are often quite treatable, especially in children.
All the best to you and your daughter