Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Langan tried keppra as an add on with lamictal after a particularly ugly seizure. She had her best seizure control on that combo (32 days) but the seizures returned. She was WILD on it- had screaming fits for hours. We finally decided it was not worth it and took her off, and the screaming fits stopped. I have heard that some parents supplement with B6 and that that helps with the mood problems. I have also heard some parents say that the mood swings went away once their children adjusted to the keppra. Whether we didn't wait long enough or what (2 months) I don't know, but the moodiness only increased for us. , mom to Langan, 20 months old and keto kid since 11/03; still working on seizure control but took last med dose 4/2/04 so as soon as it is out of her system she'll be med free!! Keppra ..... I know very little about Keppra, except that Katera is presently on it. It's the first daily med that she's been on in over four years..... and it wasn't one that our neuro would have recommended for her back then (not sure if it's that new that it wasn't around or what..... I hadn't heard of it at the time, I know). Anyway...... she's been on it since December 20th. We saw one seizure about six weeks ago (a real doozy.... but it was with fever, so at least I know the trigger). The information I read says that it's usually an add-on drug.... seldom used alone...... and that it's usually rx-ed for partial seizures in adults. So, that's puzzling....... although *some* of Katera's seizures start out like partials..... then generalize (complex partials?? I don't know all the terms and types). Supposedly, it has few side effects...... but one we've definitely seen is irritability. We had her up to 1000 mgs a day (500 morning, 500 evening) and it was really pretty intolerable. She's prone to irritability anyway, so...... ugh! All she would do is sit around biting her fingers and making noises....... I can't describe that very well, but it sounded like a wounded animal or something. Definitely someone in distress or discomfort...... but she is unable to tell us how she felt otherwise. Suffice to say, it was driving us ALL nuts. She had chewed her thumb so badly that she damaged the nail bed and her thumbnail started peeling off and growing out really weird and bumpy. She also just seemed to have no personality..... just dull, compared to her typical self. Then, she had the big seizure with a viral illness...... and I was bummed to think that all we were putting up with was for naught. After she recovered, I started slowly weaning the dosage back. I have her at 750 mgs per day now..... and the irritability is much better, she has her personality back and has stopped biting her fingers so much. We haven't seen anymore seizures...... even with a recent illness (in the past two weeks) and another ear infection. So...... I'm holding tight where we are right now. We revisit our neuro in a couple of weeks. He had wanted to add another drug but...... I don't think so. Feel like we're on a slippery enough slope as it is. Remember...... Katera is not currently on the Keto diet (she's a former Keto kid, now on the SCDiet), but we're *considering* going back to Keto at some point. Taking our own sweet time, too. Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Langan tried keppra as an add on with lamictal after a particularly ugly seizure. She had her best seizure control on that combo (32 days) but the seizures returned. She was WILD on it- had screaming fits for hours. We finally decided it was not worth it and took her off, and the screaming fits stopped. I have heard that some parents supplement with B6 and that that helps with the mood problems. I have also heard some parents say that the mood swings went away once their children adjusted to the keppra. Whether we didn't wait long enough or what (2 months) I don't know, but the moodiness only increased for us. , mom to Langan, 20 months old and keto kid since 11/03; still working on seizure control but took last med dose 4/2/04 so as soon as it is out of her system she'll be med free!! Keppra ..... I know very little about Keppra, except that Katera is presently on it. It's the first daily med that she's been on in over four years..... and it wasn't one that our neuro would have recommended for her back then (not sure if it's that new that it wasn't around or what..... I hadn't heard of it at the time, I know). Anyway...... she's been on it since December 20th. We saw one seizure about six weeks ago (a real doozy.... but it was with fever, so at least I know the trigger). The information I read says that it's usually an add-on drug.... seldom used alone...... and that it's usually rx-ed for partial seizures in adults. So, that's puzzling....... although *some* of Katera's seizures start out like partials..... then generalize (complex partials?? I don't know all the terms and types). Supposedly, it has few side effects...... but one we've definitely seen is irritability. We had her up to 1000 mgs a day (500 morning, 500 evening) and it was really pretty intolerable. She's prone to irritability anyway, so...... ugh! All she would do is sit around biting her fingers and making noises....... I can't describe that very well, but it sounded like a wounded animal or something. Definitely someone in distress or discomfort...... but she is unable to tell us how she felt otherwise. Suffice to say, it was driving us ALL nuts. She had chewed her thumb so badly that she damaged the nail bed and her thumbnail started peeling off and growing out really weird and bumpy. She also just seemed to have no personality..... just dull, compared to her typical self. Then, she had the big seizure with a viral illness...... and I was bummed to think that all we were putting up with was for naught. After she recovered, I started slowly weaning the dosage back. I have her at 750 mgs per day now..... and the irritability is much better, she has her personality back and has stopped biting her fingers so much. We haven't seen anymore seizures...... even with a recent illness (in the past two weeks) and another ear infection. So...... I'm holding tight where we are right now. We revisit our neuro in a couple of weeks. He had wanted to add another drug but...... I don't think so. Feel like we're on a slippery enough slope as it is. Remember...... Katera is not currently on the Keto diet (she's a former Keto kid, now on the SCDiet), but we're *considering* going back to Keto at some point. Taking our own sweet time, too. Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Dear Patti, I was introduced to Keppra (I now know) during a double-blind drugs trial during 1997 in the UK. At that time I was taking Sodium Valproate, Lamotrigine, Tegretol and Clobazam for complex partial seizures. During the first phase I'd been put on the placebo (sugar coated sweets basically), until finally around 4 months later I was informed I was going on the real thing. The benefits of doing these double-blind trials for the patient, is that if the drug appears to be successful in your own personal case, you're allowed to stay on the drug, regardless that it hasn't been awarded it's full licence for the open market. However, during the first few days of taking the " Real McCoy " there were little to no effects, one way or the other, but on the forth day I was in terrible trouble. I lost all semblance of balance and steadiness, my vision was shaky (not blurred), and the then wife told me after my moodswings were really not my usual self. I was on holiday at the time, I decided in the wee small hours whilst alone I would write all my experiences down. It took over 2 hours to detail little of any significance, or at least handwriting was the problem if not the grammar. I faxed the information to my consultant and by return was promptly advised to wean off it. I have heard people give good reports about Keppra, but never instances where that was the only form of medication they were taking, I hope that helps, Best wishes, Phil Keppra ..... I know very little about Keppra, except that Katera is presently on it. It's the first daily med that she's been on in over four years..... and it wasn't one that our neuro would have recommended for her back then (not sure if it's that new that it wasn't around or what..... I hadn't heard of it at the time, I know). Anyway...... she's been on it since December 20th. We saw one seizure about six weeks ago (a real doozy.... but it was with fever, so at least I know the trigger). The information I read says that it's usually an add-on drug.... seldom used alone...... and that it's usually rx-ed for partial seizures in adults. So, that's puzzling....... although *some* of Katera's seizures start out like partials..... then generalize (complex partials?? I don't know all the terms and types). Supposedly, it has few side effects...... but one we've definitely seen is irritability. We had her up to 1000 mgs a day (500 morning, 500 evening) and it was really pretty intolerable. She's prone to irritability anyway, so...... ugh! All she would do is sit around biting her fingers and making noises....... I can't describe that very well, but it sounded like a wounded animal or something. Definitely someone in distress or discomfort...... but she is unable to tell us how she felt otherwise. Suffice to say, it was driving us ALL nuts. She had chewed her thumb so badly that she damaged the nail bed and her thumbnail started peeling off and growing out really weird and bumpy. She also just seemed to have no personality..... just dull, compared to her typical self. Then, she had the big seizure with a viral illness...... and I was bummed to think that all we were putting up with was for naught. After she recovered, I started slowly weaning the dosage back. I have her at 750 mgs per day now..... and the irritability is much better, she has her personality back and has stopped biting her fingers so much. We haven't seen anymore seizures...... even with a recent illness (in the past two weeks) and another ear infection. So...... I'm holding tight where we are right now. We revisit our neuro in a couple of weeks. He had wanted to add another drug but...... I don't think so. Feel like we're on a slippery enough slope as it is. Remember...... Katera is not currently on the Keto diet (she's a former Keto kid, now on the SCDiet), but we're *considering* going back to Keto at some point. Taking our own sweet time, too. Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Dear Patti, I was introduced to Keppra (I now know) during a double-blind drugs trial during 1997 in the UK. At that time I was taking Sodium Valproate, Lamotrigine, Tegretol and Clobazam for complex partial seizures. During the first phase I'd been put on the placebo (sugar coated sweets basically), until finally around 4 months later I was informed I was going on the real thing. The benefits of doing these double-blind trials for the patient, is that if the drug appears to be successful in your own personal case, you're allowed to stay on the drug, regardless that it hasn't been awarded it's full licence for the open market. However, during the first few days of taking the " Real McCoy " there were little to no effects, one way or the other, but on the forth day I was in terrible trouble. I lost all semblance of balance and steadiness, my vision was shaky (not blurred), and the then wife told me after my moodswings were really not my usual self. I was on holiday at the time, I decided in the wee small hours whilst alone I would write all my experiences down. It took over 2 hours to detail little of any significance, or at least handwriting was the problem if not the grammar. I faxed the information to my consultant and by return was promptly advised to wean off it. I have heard people give good reports about Keppra, but never instances where that was the only form of medication they were taking, I hope that helps, Best wishes, Phil Keppra ..... I know very little about Keppra, except that Katera is presently on it. It's the first daily med that she's been on in over four years..... and it wasn't one that our neuro would have recommended for her back then (not sure if it's that new that it wasn't around or what..... I hadn't heard of it at the time, I know). Anyway...... she's been on it since December 20th. We saw one seizure about six weeks ago (a real doozy.... but it was with fever, so at least I know the trigger). The information I read says that it's usually an add-on drug.... seldom used alone...... and that it's usually rx-ed for partial seizures in adults. So, that's puzzling....... although *some* of Katera's seizures start out like partials..... then generalize (complex partials?? I don't know all the terms and types). Supposedly, it has few side effects...... but one we've definitely seen is irritability. We had her up to 1000 mgs a day (500 morning, 500 evening) and it was really pretty intolerable. She's prone to irritability anyway, so...... ugh! All she would do is sit around biting her fingers and making noises....... I can't describe that very well, but it sounded like a wounded animal or something. Definitely someone in distress or discomfort...... but she is unable to tell us how she felt otherwise. Suffice to say, it was driving us ALL nuts. She had chewed her thumb so badly that she damaged the nail bed and her thumbnail started peeling off and growing out really weird and bumpy. She also just seemed to have no personality..... just dull, compared to her typical self. Then, she had the big seizure with a viral illness...... and I was bummed to think that all we were putting up with was for naught. After she recovered, I started slowly weaning the dosage back. I have her at 750 mgs per day now..... and the irritability is much better, she has her personality back and has stopped biting her fingers so much. We haven't seen anymore seizures...... even with a recent illness (in the past two weeks) and another ear infection. So...... I'm holding tight where we are right now. We revisit our neuro in a couple of weeks. He had wanted to add another drug but...... I don't think so. Feel like we're on a slippery enough slope as it is. Remember...... Katera is not currently on the Keto diet (she's a former Keto kid, now on the SCDiet), but we're *considering* going back to Keto at some point. Taking our own sweet time, too. Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Thanks for your input, Phil. I will say that Keppra is certainly not the worst drug Katera has ever been on..... the irritability being the worst symptom of Keppra we have seen. I think Tegretol would have to be granted the title of " The Worst of the Worst " for us (increased seizures and finally, a severe allergic reaction & status episode due to a necessarily fast wean that nearly killed her). Katera is fairly severely physically and mentally disabled, so although we certainly don't need anything else impairing her balance and coordination, since she already has enough trouble in that department, we fortunately have not seen her balance worsening at all. She has only been an independent walker for about a year and is not very good at it, but is continuing on..... getting around just as well as before, and actually making some small gains there. I've not noticed any affects to her vision...... though she does already have some impairment of depth perception due to her brain defect (partially absent corpus callosum). She seems to see and respond normally (for her). Since we started Keppra, she has been grinding her teeth almost constantly..... which has NOT gone away with a dosage reduction..... so I will be happy enough to see it gone for good. I am just unsure as to whether it's contributing to our current level of control or not........ who can say? I think her current blood level is probably quite low..... as it was revealed to be on the low end even at the higher dosage. Anyway, I thank you for your insights. How I wish Katera could somehow tell me how she feels. I appreciate your being able to be a voice for our kids in terms of the effects of some of these meds and seizures. Patti, mom to Katera (age 7 and 1/2) Re: Keppra Dear Patti, I was introduced to Keppra (I now know) during a double-blind drugs trial during 1997 in the UK. At that time I was taking Sodium Valproate, Lamotrigine, Tegretol and Clobazam for complex partial seizures. During the first phase I'd been put on the placebo (sugar coated sweets basically), until finally around 4 months later I was informed I was going on the real thing. The benefits of doing these double-blind trials for the patient, is that if the drug appears to be successful in your own personal case, you're allowed to stay on the drug, regardless that it hasn't been awarded it's full licence for the open market. However, during the first few days of taking the " Real McCoy " there were little to no effects, one way or the other, but on the forth day I was in terrible trouble. I lost all semblance of balance and steadiness, my vision was shaky (not blurred), and the then wife told me after my moodswings were really not my usual self. I was on holiday at the time, I decided in the wee small hours whilst alone I would write all my experiences down. It took over 2 hours to detail little of any significance, or at least handwriting was the problem if not the grammar. I faxed the information to my consultant and by return was promptly advised to wean off it. I have heard people give good reports about Keppra, but never instances where that was the only form of medication they were taking, I hope that helps, Best wishes, Phil Quote Link to comment Share on other sites More sharing options...
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