Guest guest Posted October 11, 2009 Report Share Posted October 11, 2009 I am very interested in Keppra. How did it help your son? Did you use b6 w/it? To: mb12 valtrex From: slmacdonald77@...Date: Sun, 11 Oct 2009 00:41:50 +0000Subject: Re: Lamictal My son is on Lamictal. He weighs about 45 lbs and is on 175mg. We will likely increase to 200mg to account for some recent weight gain. We increased VERY slowly and were even cutting 25mg tablets in half originally. We tried both Keppra and Topamax first. Keppra was great but overtime he grew very agressive. After doing some research I discovered a common nickname is Kep-Rage. His aggression immediatly stopped when we took him off the med. We then tried Topamax and he almost immediatly stopped eating. So, we went to Lamictal. It actually has very few side effects in comparison to most anticonvulsants but certainly research s Syndrome first so you know what you are looking for.> >> >>> >>> >> Is any one 's child on this - at what dose/ weight? We are not yet at our> >> Target dose but have seen some negatives (impulsiveness, agitated) this week> >> so trying to figure it out! Keri> >>> >> > > >> Hotmail: Free, trusted and rich email service. Get it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2009 Report Share Posted October 12, 2009 My son has absence seizures which we could never see (only showed up on EEG), so I couldn't tell if it was actually stopping seizures. But immediately after starting Keppra he showed a lot of improvement. For example, he started singing again, something he had done previously, but we hadn't heard him do in a long time. Then we took him to the playland at Mc's. Previously he would just climb up a little and lie there, then maybe climb a little later. A few days after Keppra he just started climbing, and climbed all over the thing, just like the typical kids were doing. We were shocked. He also started loving his baths again (he used to love them, then started getting nervous about getting into the water; I think there was some kind of proprioceptive or depth perception issue going on). After starting the Keppra he got in the bathtub, laid down in the water and splashed, enjoyed it like he had never been in water before. We were giving him Kirkman multi-vitamins, which had about 40 mg I believe of B6, plus some extra p-5-p before he started the Keppra, and we kept him on them. You can ask your neurologist, but I don't think there's any problem taking them together. Our previous neurologist knew Marlon was on b-6 when he started him on Keppra. (Of course this is the same neuro who switched my son to Lamictal on a higher dose than he should have had, and didn't even warn me about a rash, SJS or anything -- so you should ask your own neurologist instead of trusting mine!) I am very interested in Keppra. How did it help your son? Did you use b6 w/it? To: mb12 valtrex From: slmacdonald77@...Date: Sun, 11 Oct 2009 00:41:50 +0000 Subject: Re: Lamictal My son is on Lamictal. He weighs about 45 lbs and is on 175mg. We will likely increase to 200mg to account for some recent weight gain. We increased VERY slowly and were even cutting 25mg tablets in half originally. We tried both Keppra and Topamax first. Keppra was great but overtime he grew very agressive. After doing some research I discovered a common nickname is Kep-Rage. His aggression immediatly stopped when we took him off the med. We then tried Topamax and he almost immediatly stopped eating. So, we went to Lamictal. It actually has very few side effects in comparison to most anticonvulsants but certainly research s Syndrome first so you know what you are looking for. > >> >>> >>> >> Is any one 's child on this - at what dose/ weight? We are not yet at our> >> Target dose but have seen some negatives (impulsiveness, agitated) this week > >> so trying to figure it out! Keri> >>> >> > > >> Hotmail: Free, trusted and rich email service. Get it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2009 Report Share Posted October 12, 2009 I thought b6 was suppossed to help the behaviors/aggressions. I wonder if the dose of b6 needed to be adjusted. I've heard really good things about keppra...did you ever try depakote? To: mb12 valtrex From: rabroyles@...Date: Mon, 12 Oct 2009 17:59:24 -0400Subject: Re: Re: Lamictal My son has absence seizures which we could never see (only showed up on EEG), so I couldn't tell if it was actually stopping seizures. But immediately after starting Keppra he showed a lot of improvement. For example, he started singing again, something he had done previously, but we hadn't heard him do in a long time. Then we took him to the playland at Mc's. Previously he would just climb up a little and lie there, then maybe climb a little later. A few days after Keppra he just started climbing, and climbed all over the thing, just like the typical kids were doing. We were shocked. He also started loving his baths again (he used to love them, then started getting nervous about getting into the water; I think there was some kind of proprioceptive or depth perception issue going on). After starting the Keppra he got in the bathtub, laid down in the water and splashed, enjoyed it like he had never been in water before. We were giving him Kirkman multi-vitamins, which had about 40 mg I believe of B6, plus some extra p-5-p before he started the Keppra, and we kept him on them. You can ask your neurologist, but I don't think there's any problem taking them together. Our previous neurologist knew Marlon was on b-6 when he started him on Keppra. (Of course this is the same neuro who switched my son to Lamictal on a higher dose than he should have had, and didn't even warn me about a rash, SJS or anything -- so you should ask your own neurologist instead of trusting mine!) On Sun, Oct 11, 2009 at 9:06 AM, Buckley <stephaniejbuckleyhotmail> wrote: I am very interested in Keppra. How did it help your son? Did you use b6 w/it? To: mb12 valtrex From: slmacdonald77Date: Sun, 11 Oct 2009 00:41:50 +0000Subject: Re: Lamictal My son is on Lamictal. He weighs about 45 lbs and is on 175mg. We will likely increase to 200mg to account for some recent weight gain. We increased VERY slowly and were even cutting 25mg tablets in half originally. We tried both Keppra and Topamax first. Keppra was great but overtime he grew very agressive. After doing some research I discovered a common nickname is Kep-Rage. His aggression immediatly stopped when we took him off the med. We then tried Topamax and he almost immediatly stopped eating. So, we went to Lamictal. It actually has very few side effects in comparison to most anticonvulsants but certainly research s Syndrome first so you know what you are looking for.> >> >>> >>> >> Is any one 's child on this - at what dose/ weight? We are not yet at our> >> Target dose but have seen some negatives (impulsiveness, agitated) this week> >> so trying to figure it out! Keri> >>> >> > > >> Hotmail: Free, trusted and rich email service. Get it now. Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. Sign up now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2009 Report Share Posted October 12, 2009 Didn't try Depakote. Should have stayed on Keppra. The neuro mistook Marlon's stimming for " mouth seizures " (I now know those weren't seizures, because he could be interrupted and would stop) and switched him to Lamotrigine when the Keppra didn't stop the behavior. Soon afterwards my son ended up in the hospital, and I've been terrified to try any other seizure med. We have now relocated to another state and have a new neuro and are going to get an overnight EEG to help determine what to do next. But in the meantime we have increased is B-6 and CLO, and it is making a difference. Wasn't real dramatic, but he seemed to just be more " there " and aware. We had used the highest dose recommended by Dr. McCandless (I can't remember what that was now), and we did notice improvements. The problem is it tastes so bad it's hard to get down him. I now use Autistique 1 and 2, which are trans-dermal versions of numerous supplements (like a multi-vitamin), and it's very heavy on the B vitamins. I've also heard from " Our Kids " supplements that you can order a good-tasting supplement from them without the B vitamins (since the Bs are what make multi vitamins taste so bad), then get your B vitamins in a cream trans-dermal form from the Lee Silsby compounding pharmacy. You do need a prescription for that -- your doc or DAN can just call it in. I haven't tried this, but it's what I plan to do once the Autistique is all used up. I thought b6 was suppossed to help the behaviors/aggressions. I wonder if the dose of b6 needed to be adjusted. I've heard really good things about keppra...did you ever try depakote? To: mb12 valtrex From: rabroyles@...Date: Mon, 12 Oct 2009 17:59:24 -0400 Subject: Re: Re: Lamictal My son has absence seizures which we could never see (only showed up on EEG), so I couldn't tell if it was actually stopping seizures. But immediately after starting Keppra he showed a lot of improvement. For example, he started singing again, something he had done previously, but we hadn't heard him do in a long time. Then we took him to the playland at Mc's. Previously he would just climb up a little and lie there, then maybe climb a little later. A few days after Keppra he just started climbing, and climbed all over the thing, just like the typical kids were doing. We were shocked. He also started loving his baths again (he used to love them, then started getting nervous about getting into the water; I think there was some kind of proprioceptive or depth perception issue going on). After starting the Keppra he got in the bathtub, laid down in the water and splashed, enjoyed it like he had never been in water before. We were giving him Kirkman multi-vitamins, which had about 40 mg I believe of B6, plus some extra p-5-p before he started the Keppra, and we kept him on them. You can ask your neurologist, but I don't think there's any problem taking them together. Our previous neurologist knew Marlon was on b-6 when he started him on Keppra. (Of course this is the same neuro who switched my son to Lamictal on a higher dose than he should have had, and didn't even warn me about a rash, SJS or anything -- so you should ask your own neurologist instead of trusting mine!) I am very interested in Keppra. How did it help your son? Did you use b6 w/it? To: mb12 valtrex From: slmacdonald77@...Date: Sun, 11 Oct 2009 00:41:50 +0000 Subject: Re: Lamictal My son is on Lamictal. He weighs about 45 lbs and is on 175mg. We will likely increase to 200mg to account for some recent weight gain. We increased VERY slowly and were even cutting 25mg tablets in half originally. We tried both Keppra and Topamax first. Keppra was great but overtime he grew very agressive. After doing some research I discovered a common nickname is Kep-Rage. His aggression immediatly stopped when we took him off the med. We then tried Topamax and he almost immediatly stopped eating. So, we went to Lamictal. It actually has very few side effects in comparison to most anticonvulsants but certainly research s Syndrome first so you know what you are looking for. > >> >>> >>> >> Is any one 's child on this - at what dose/ weight? We are not yet at our> >> Target dose but have seen some negatives (impulsiveness, agitated) this week > >> so trying to figure it out! Keri> >>> >> > > >> Hotmail: Free, trusted and rich email service. Get it now. Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. Sign up now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 thanks, where do you live? To: mb12 valtrex From: rabroyles@...Date: Tue, 13 Oct 2009 00:16:32 -0400Subject: Re: Re: Lamictal Didn't try Depakote. Should have stayed on Keppra. The neuro mistook Marlon's stimming for "mouth seizures" (I now know those weren't seizures, because he could be interrupted and would stop) and switched him to Lamotrigine when the Keppra didn't stop the behavior. Soon afterwards my son ended up in the hospital, and I've been terrified to try any other seizure med. We have now relocated to another state and have a new neuro and are going to get an overnight EEG to help determine what to do next. But in the meantime we have increased is B-6 and CLO, and it is making a difference. Wasn't real dramatic, but he seemed to just be more "there" and aware. We had used the highest dose recommended by Dr. McCandless (I can't remember what that was now), and we did notice improvements. The problem is it tastes so bad it's hard to get down him. I now use Autistique 1 and 2, which are trans-dermal versions of numerous supplements (like a multi-vitamin), and it's very heavy on the B vitamins. I've also heard from "Our Kids" supplements that you can order a good-tasting supplement from them without the B vitamins (since the Bs are what make multi vitamins taste so bad), then get your B vitamins in a cream trans-dermal form from the Lee Silsby compounding pharmacy. You do need a prescription for that -- your doc or DAN can just call it in. I haven't tried this, but it's what I plan to do once the Autistique is all used up. On Mon, Oct 12, 2009 at 6:13 PM, Buckley <stephaniejbuckleyhotmail> wrote: I thought b6 was suppossed to help the behaviors/aggressions. I wonder if the dose of b6 needed to be adjusted. I've heard really good things about keppra...did you ever try depakote? To: mb12 valtrex From: rabroylesgmailDate: Mon, 12 Oct 2009 17:59:24 -0400Subject: Re: Re: Lamictal My son has absence seizures which we could never see (only showed up on EEG), so I couldn't tell if it was actually stopping seizures. But immediately after starting Keppra he showed a lot of improvement. For example, he started singing again, something he had done previously, but we hadn't heard him do in a long time. Then we took him to the playland at Mc's. Previously he would just climb up a little and lie there, then maybe climb a little later. A few days after Keppra he just started climbing, and climbed all over the thing, just like the typical kids were doing. We were shocked. He also started loving his baths again (he used to love them, then started getting nervous about getting into the water; I think there was some kind of proprioceptive or depth perception issue going on). After starting the Keppra he got in the bathtub, laid down in the water and splashed, enjoyed it like he had never been in water before. We were giving him Kirkman multi-vitamins, which had about 40 mg I believe of B6, plus some extra p-5-p before he started the Keppra, and we kept him on them. You can ask your neurologist, but I don't think there's any problem taking them together. Our previous neurologist knew Marlon was on b-6 when he started him on Keppra. (Of course this is the same neuro who switched my son to Lamictal on a higher dose than he should have had, and didn't even warn me about a rash, SJS or anything -- so you should ask your own neurologist instead of trusting mine!) On Sun, Oct 11, 2009 at 9:06 AM, Buckley <stephaniejbuckleyhotmail> wrote: I am very interested in Keppra. How did it help your son? Did you use b6 w/it? To: mb12 valtrex From: slmacdonald77Date: Sun, 11 Oct 2009 00:41:50 +0000Subject: Re: Lamictal My son is on Lamictal. He weighs about 45 lbs and is on 175mg. We will likely increase to 200mg to account for some recent weight gain. We increased VERY slowly and were even cutting 25mg tablets in half originally. We tried both Keppra and Topamax first. Keppra was great but overtime he grew very agressive. After doing some research I discovered a common nickname is Kep-Rage. His aggression immediatly stopped when we took him off the med. We then tried Topamax and he almost immediatly stopped eating. So, we went to Lamictal. It actually has very few side effects in comparison to most anticonvulsants but certainly research s Syndrome first so you know what you are looking for.> >> >>> >>> >> Is any one 's child on this - at what dose/ weight? We are not yet at our> >> Target dose but have seen some negatives (impulsiveness, agitated) this week> >> so trying to figure it out! Keri> >>> >> > > >> Hotmail: Free, trusted and rich email service. Get it now. Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. Sign up now. Hotmail: Powerful Free email with security by Microsoft. Get it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 andria, VA. Left ton, SC. The hospitals and medical care here are MUCH better. thanks, where do you live? To: mb12 valtrex From: rabroyles@...Date: Tue, 13 Oct 2009 00:16:32 -0400 Subject: Re: Re: Lamictal Didn't try Depakote. Should have stayed on Keppra. The neuro mistook Marlon's stimming for " mouth seizures " (I now know those weren't seizures, because he could be interrupted and would stop) and switched him to Lamotrigine when the Keppra didn't stop the behavior. Soon afterwards my son ended up in the hospital, and I've been terrified to try any other seizure med. We have now relocated to another state and have a new neuro and are going to get an overnight EEG to help determine what to do next. But in the meantime we have increased is B-6 and CLO, and it is making a difference. Wasn't real dramatic, but he seemed to just be more " there " and aware. We had used the highest dose recommended by Dr. McCandless (I can't remember what that was now), and we did notice improvements. The problem is it tastes so bad it's hard to get down him. I now use Autistique 1 and 2, which are trans-dermal versions of numerous supplements (like a multi-vitamin), and it's very heavy on the B vitamins. I've also heard from " Our Kids " supplements that you can order a good-tasting supplement from them without the B vitamins (since the Bs are what make multi vitamins taste so bad), then get your B vitamins in a cream trans-dermal form from the Lee Silsby compounding pharmacy. You do need a prescription for that -- your doc or DAN can just call it in. I haven't tried this, but it's what I plan to do once the Autistique is all used up. I thought b6 was suppossed to help the behaviors/aggressions. I wonder if the dose of b6 needed to be adjusted. I've heard really good things about keppra...did you ever try depakote? To: mb12 valtrex From: rabroyles@...Date: Mon, 12 Oct 2009 17:59:24 -0400 Subject: Re: Re: Lamictal My son has absence seizures which we could never see (only showed up on EEG), so I couldn't tell if it was actually stopping seizures. But immediately after starting Keppra he showed a lot of improvement. For example, he started singing again, something he had done previously, but we hadn't heard him do in a long time. Then we took him to the playland at Mc's. Previously he would just climb up a little and lie there, then maybe climb a little later. A few days after Keppra he just started climbing, and climbed all over the thing, just like the typical kids were doing. We were shocked. He also started loving his baths again (he used to love them, then started getting nervous about getting into the water; I think there was some kind of proprioceptive or depth perception issue going on). After starting the Keppra he got in the bathtub, laid down in the water and splashed, enjoyed it like he had never been in water before. We were giving him Kirkman multi-vitamins, which had about 40 mg I believe of B6, plus some extra p-5-p before he started the Keppra, and we kept him on them. You can ask your neurologist, but I don't think there's any problem taking them together. Our previous neurologist knew Marlon was on b-6 when he started him on Keppra. (Of course this is the same neuro who switched my son to Lamictal on a higher dose than he should have had, and didn't even warn me about a rash, SJS or anything -- so you should ask your own neurologist instead of trusting mine!) I am very interested in Keppra. How did it help your son? Did you use b6 w/it? To: mb12 valtrex From: slmacdonald77@...Date: Sun, 11 Oct 2009 00:41:50 +0000 Subject: Re: Lamictal My son is on Lamictal. He weighs about 45 lbs and is on 175mg. We will likely increase to 200mg to account for some recent weight gain. We increased VERY slowly and were even cutting 25mg tablets in half originally. We tried both Keppra and Topamax first. Keppra was great but overtime he grew very agressive. After doing some research I discovered a common nickname is Kep-Rage. His aggression immediatly stopped when we took him off the med. We then tried Topamax and he almost immediatly stopped eating. So, we went to Lamictal. It actually has very few side effects in comparison to most anticonvulsants but certainly research s Syndrome first so you know what you are looking for. > >> >>> >>> >> Is any one 's child on this - at what dose/ weight? We are not yet at our> >> Target dose but have seen some negatives (impulsiveness, agitated) this week > >> so trying to figure it out! Keri> >>> >> > > >> Hotmail: Free, trusted and rich email service. Get it now. Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. Sign up now. Hotmail: Powerful Free email with security by Microsoft. Get it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2009 Report Share Posted October 13, 2009 Thanks for bringing this up - I had completely forgotten about it, but Keppra does cause aggression with some kids. That happened with a friend of mine whose son took it. Fortunately my son did not have those problems. Keppra was great and like others we also noticed some great gains with Keppra. But the aggression was really horrible. My son also has absence seizures and I am pretty sure Keppra was controlling them. His neurologist (which I think highly of) suggested we try some other meds though because of the aggression. It has been a year since he was on Keppra and while the Lamictal controls his epilepsy, we have not seen the same positive side effects that we saw with Keppra. We have an appointment with the neurologist soon and I am hoping to discuss trying Keppra again. My son is now 4 and has gained about 15 lbs since he was last on Keppra so possibly now he can better tolerate the side effects. My son has never been on Depakote, but I have been on it for 20 years. I have Juvenile Myoclonic Epilepsy (JME) which started when I was a 13. It controls myoclonic seizures well with few side effects (foggy brain if my dose is too high). However, it took me about 5 years to determine what time of day to take the meds and how many to take so that the seizures were controlled and the side effects were minimized. > > > >> > > >> > > > >>> > > >> Is any one 's child on this - at what dose/ weight? We are not yet at> > our> > > >> Target dose but have seen some negatives (impulsiveness, agitated) > > this week> > > >> so trying to figure it out! Keri> > > >>> > > >> > > >> > > >> > >> >> > > >> > ------------------------------> > Hotmail: Free, trusted and rich email service. Get it now.<http://clk.atdmt.com/GBL/go/171222984/direct/01/> > >> >> >> >> >> >> >> >> >> > ------------------------------ > > Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. Sign up> > now. <http://clk.atdmt.com/GBL/go/171222985/direct/01/> > >> >> >> >> >> > ------------------------------> > Hotmail: Powerful Free email with security by Microsoft. Get it now.<http://clk.atdmt.com/GBL/go/171222986/direct/01/> > >> > > >> Quote Link to comment Share on other sites More sharing options...
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