Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 We have been using the CarnAware brand since July. But are now switching to the Now brand. I buy the 500 mg capsules just so she has less pills to take but I am pretty sure they come in 250 mg capsules too, not sure how much smaller they are. We started using Dr Chez' formula cuz neuro wanted to replicate his study (we did a trial to see if we could get funding), now that we have had some great success cognitively and socially (since upping original dose from 1200 mg to 2200 mg, but we made up the difference with the NOW brand cuz I coudln't afford the other), we are asking for funding for just the NOW brand, it is so much cheaper, I am supplementing with Vit E on the side though, I figure she gets enough zinc in her multi. So have you asked Chez why his is so expensive?? , 's mom KetoKidMom wrote: > Hey group, > > I am the one who orginally posted the L-Carnosine question. > > I am aware that there is a difference between L-Carnosine and Carnitor > (levocarnitine). Several years ago my daughter was on Carnitor. > Eventually stopped it because as she grew older she couldn't tolerate > the taste anymore. We did see improvement in muscle tone and control > with the carnitor. > > Then we started the carnosine per Dr. Chez. We really didn't see a > difference with seizure control but saw a big difference in cognitive > abilities. We didn't tell the school we introduced it and the teachers > kept reporting how she had a real surge in progress and that things > were " clicking " for her. The Carn-Aware that Chez use to sell was so > expensive so he told me to try a Vitamine Shoppe brand. It comes in > 500mg and doesn't have any added ingredients/carbs. I bought some > and my daughter doesn't like them. The are too big to swallow and too > difficult and yucky to chew up. She is on 2000mg a day. When I try > mixing it in her applesauce it makes the applesauce texture unpleasant > to her. She won't eat it. The Carn-Aware capsules were only 250 mg, > much smaller in size, and she would easily chew 5 of them at a time. > > She has been off the L-carnosine for a little over a week now because > of her not taking the Vitamin Shoppe brand and I haven't bought > anymore Carn-Aware yet. I am getting reports from school that she > just " isn't herself " . The school doesn't know I took her off it. > Yesterday, I had to go get her from school because she was feeling > auras. Coincidence? I don't know. That is why I wanted to know > other people's experience with using L- Carnosine and then stopping > L-Carnosine. > > Does anyone else use the Carn-Aware brand or am I the only fool to buy > the overpriced stuff. But it looks like it is the only stuff my > daughter will take and I think the stuff works for her. > > Thanks for the feedback. > > T-Lee > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 We have been using the CarnAware brand since July. But are now switching to the Now brand. I buy the 500 mg capsules just so she has less pills to take but I am pretty sure they come in 250 mg capsules too, not sure how much smaller they are. We started using Dr Chez' formula cuz neuro wanted to replicate his study (we did a trial to see if we could get funding), now that we have had some great success cognitively and socially (since upping original dose from 1200 mg to 2200 mg, but we made up the difference with the NOW brand cuz I coudln't afford the other), we are asking for funding for just the NOW brand, it is so much cheaper, I am supplementing with Vit E on the side though, I figure she gets enough zinc in her multi. So have you asked Chez why his is so expensive?? , 's mom KetoKidMom wrote: > Hey group, > > I am the one who orginally posted the L-Carnosine question. > > I am aware that there is a difference between L-Carnosine and Carnitor > (levocarnitine). Several years ago my daughter was on Carnitor. > Eventually stopped it because as she grew older she couldn't tolerate > the taste anymore. We did see improvement in muscle tone and control > with the carnitor. > > Then we started the carnosine per Dr. Chez. We really didn't see a > difference with seizure control but saw a big difference in cognitive > abilities. We didn't tell the school we introduced it and the teachers > kept reporting how she had a real surge in progress and that things > were " clicking " for her. The Carn-Aware that Chez use to sell was so > expensive so he told me to try a Vitamine Shoppe brand. It comes in > 500mg and doesn't have any added ingredients/carbs. I bought some > and my daughter doesn't like them. The are too big to swallow and too > difficult and yucky to chew up. She is on 2000mg a day. When I try > mixing it in her applesauce it makes the applesauce texture unpleasant > to her. She won't eat it. The Carn-Aware capsules were only 250 mg, > much smaller in size, and she would easily chew 5 of them at a time. > > She has been off the L-carnosine for a little over a week now because > of her not taking the Vitamin Shoppe brand and I haven't bought > anymore Carn-Aware yet. I am getting reports from school that she > just " isn't herself " . The school doesn't know I took her off it. > Yesterday, I had to go get her from school because she was feeling > auras. Coincidence? I don't know. That is why I wanted to know > other people's experience with using L- Carnosine and then stopping > L-Carnosine. > > Does anyone else use the Carn-Aware brand or am I the only fool to buy > the overpriced stuff. But it looks like it is the only stuff my > daughter will take and I think the stuff works for her. > > Thanks for the feedback. > > T-Lee > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 We have been using the CarnAware brand since July. But are now switching to the Now brand. I buy the 500 mg capsules just so she has less pills to take but I am pretty sure they come in 250 mg capsules too, not sure how much smaller they are. We started using Dr Chez' formula cuz neuro wanted to replicate his study (we did a trial to see if we could get funding), now that we have had some great success cognitively and socially (since upping original dose from 1200 mg to 2200 mg, but we made up the difference with the NOW brand cuz I coudln't afford the other), we are asking for funding for just the NOW brand, it is so much cheaper, I am supplementing with Vit E on the side though, I figure she gets enough zinc in her multi. So have you asked Chez why his is so expensive?? , 's mom KetoKidMom wrote: > Hey group, > > I am the one who orginally posted the L-Carnosine question. > > I am aware that there is a difference between L-Carnosine and Carnitor > (levocarnitine). Several years ago my daughter was on Carnitor. > Eventually stopped it because as she grew older she couldn't tolerate > the taste anymore. We did see improvement in muscle tone and control > with the carnitor. > > Then we started the carnosine per Dr. Chez. We really didn't see a > difference with seizure control but saw a big difference in cognitive > abilities. We didn't tell the school we introduced it and the teachers > kept reporting how she had a real surge in progress and that things > were " clicking " for her. The Carn-Aware that Chez use to sell was so > expensive so he told me to try a Vitamine Shoppe brand. It comes in > 500mg and doesn't have any added ingredients/carbs. I bought some > and my daughter doesn't like them. The are too big to swallow and too > difficult and yucky to chew up. She is on 2000mg a day. When I try > mixing it in her applesauce it makes the applesauce texture unpleasant > to her. She won't eat it. The Carn-Aware capsules were only 250 mg, > much smaller in size, and she would easily chew 5 of them at a time. > > She has been off the L-carnosine for a little over a week now because > of her not taking the Vitamin Shoppe brand and I haven't bought > anymore Carn-Aware yet. I am getting reports from school that she > just " isn't herself " . The school doesn't know I took her off it. > Yesterday, I had to go get her from school because she was feeling > auras. Coincidence? I don't know. That is why I wanted to know > other people's experience with using L- Carnosine and then stopping > L-Carnosine. > > Does anyone else use the Carn-Aware brand or am I the only fool to buy > the overpriced stuff. But it looks like it is the only stuff my > daughter will take and I think the stuff works for her. > > Thanks for the feedback. > > T-Lee > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 KetoKidMom wrote: > Chez no longer sells the CarnAware in his office. You can only get > it through the website now. He said something about it being a > conflict of interest to continue selling it in his office. I tend to think its a conflict of interest - although thats not the accurate term to use - for him to make and sale an incredibly expensive formula for the very kids he is trying to help, just my opinion....... > > Did your nuero have success at replicating his study and results? > Just curious. I will look into the NOW brand. Well I am dying to share this with someone so here goes, just got a copy of neuro's letter today that he wrote to the gov't agency we are trying to get funding from. This has been a long hard struggle to get this far, initially got funding from July/03 to Nov/03, then convinced then to extend to end of Feb/04. Here are excerpts from neuro's letter: " As you know, has been receiving carnosine supplementation. There were two goals in providing the supplementation - improved seizure control and improved cognitive function. I approached the trial of Carnosine with a great deal of skepticism; however, I didn't feel any harm would come. has had seizures since Carnosine was started so clearly it has not stopped her epilepsy...To my suprise however there is quite good objective scientific data that she has made some cognitive gains (here he lists the results of psych testing). ...'s cognitive improvement also seems well documented by her speech and language pathologist who noted considerable improvement in her memory and comprehension and a greater ability to answer questions correctly and retell a story. Her family has also seen considerable gains in her learning abiltiy. Based on these careful assessments I have to begrudgingly admit that really has made some important gains since taking Carnosine. I would think it most reasonable for her to continue with the Carnosine... First I laughed and laughed, I have a good relationship with neuro (or at least think I do!) and found his " skepticism " and " suprise " amusing, but his " begrudgingly admit " comment was over the top. Then I thought about it some more and felt a little pissy, nothing like saying I totally pushed him into it......which I did. Then I decided that the way he wrote the letter might actually increase our chances of getting funding, so...... We did not do the correct tests to replicate Chez' work though. First round of psych testing in August, they did expressive language and some other pieces of neuropsych testing. This month, they didn't even do expressive language testing.......really stiupid since I pointed out to them that Chez had found improvements in expressive language and autism traits. We did no autism testing (even though socially the school and us saw noticable improvements), because they paid no attention to that initially and then said whats the point, we have no baseline on autistic traits to compare to? Which is true, but we could have got a baseline before we upped dose in January. But they didn't, geuss it doesn't matter since he is recommending we continue anyway. Boy did that get long, sorry..... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 KetoKidMom wrote: > Chez no longer sells the CarnAware in his office. You can only get > it through the website now. He said something about it being a > conflict of interest to continue selling it in his office. I tend to think its a conflict of interest - although thats not the accurate term to use - for him to make and sale an incredibly expensive formula for the very kids he is trying to help, just my opinion....... > > Did your nuero have success at replicating his study and results? > Just curious. I will look into the NOW brand. Well I am dying to share this with someone so here goes, just got a copy of neuro's letter today that he wrote to the gov't agency we are trying to get funding from. This has been a long hard struggle to get this far, initially got funding from July/03 to Nov/03, then convinced then to extend to end of Feb/04. Here are excerpts from neuro's letter: " As you know, has been receiving carnosine supplementation. There were two goals in providing the supplementation - improved seizure control and improved cognitive function. I approached the trial of Carnosine with a great deal of skepticism; however, I didn't feel any harm would come. has had seizures since Carnosine was started so clearly it has not stopped her epilepsy...To my suprise however there is quite good objective scientific data that she has made some cognitive gains (here he lists the results of psych testing). ...'s cognitive improvement also seems well documented by her speech and language pathologist who noted considerable improvement in her memory and comprehension and a greater ability to answer questions correctly and retell a story. Her family has also seen considerable gains in her learning abiltiy. Based on these careful assessments I have to begrudgingly admit that really has made some important gains since taking Carnosine. I would think it most reasonable for her to continue with the Carnosine... First I laughed and laughed, I have a good relationship with neuro (or at least think I do!) and found his " skepticism " and " suprise " amusing, but his " begrudgingly admit " comment was over the top. Then I thought about it some more and felt a little pissy, nothing like saying I totally pushed him into it......which I did. Then I decided that the way he wrote the letter might actually increase our chances of getting funding, so...... We did not do the correct tests to replicate Chez' work though. First round of psych testing in August, they did expressive language and some other pieces of neuropsych testing. This month, they didn't even do expressive language testing.......really stiupid since I pointed out to them that Chez had found improvements in expressive language and autism traits. We did no autism testing (even though socially the school and us saw noticable improvements), because they paid no attention to that initially and then said whats the point, we have no baseline on autistic traits to compare to? Which is true, but we could have got a baseline before we upped dose in January. But they didn't, geuss it doesn't matter since he is recommending we continue anyway. Boy did that get long, sorry..... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 KetoKidMom wrote: > Chez no longer sells the CarnAware in his office. You can only get > it through the website now. He said something about it being a > conflict of interest to continue selling it in his office. I tend to think its a conflict of interest - although thats not the accurate term to use - for him to make and sale an incredibly expensive formula for the very kids he is trying to help, just my opinion....... > > Did your nuero have success at replicating his study and results? > Just curious. I will look into the NOW brand. Well I am dying to share this with someone so here goes, just got a copy of neuro's letter today that he wrote to the gov't agency we are trying to get funding from. This has been a long hard struggle to get this far, initially got funding from July/03 to Nov/03, then convinced then to extend to end of Feb/04. Here are excerpts from neuro's letter: " As you know, has been receiving carnosine supplementation. There were two goals in providing the supplementation - improved seizure control and improved cognitive function. I approached the trial of Carnosine with a great deal of skepticism; however, I didn't feel any harm would come. has had seizures since Carnosine was started so clearly it has not stopped her epilepsy...To my suprise however there is quite good objective scientific data that she has made some cognitive gains (here he lists the results of psych testing). ...'s cognitive improvement also seems well documented by her speech and language pathologist who noted considerable improvement in her memory and comprehension and a greater ability to answer questions correctly and retell a story. Her family has also seen considerable gains in her learning abiltiy. Based on these careful assessments I have to begrudgingly admit that really has made some important gains since taking Carnosine. I would think it most reasonable for her to continue with the Carnosine... First I laughed and laughed, I have a good relationship with neuro (or at least think I do!) and found his " skepticism " and " suprise " amusing, but his " begrudgingly admit " comment was over the top. Then I thought about it some more and felt a little pissy, nothing like saying I totally pushed him into it......which I did. Then I decided that the way he wrote the letter might actually increase our chances of getting funding, so...... We did not do the correct tests to replicate Chez' work though. First round of psych testing in August, they did expressive language and some other pieces of neuropsych testing. This month, they didn't even do expressive language testing.......really stiupid since I pointed out to them that Chez had found improvements in expressive language and autism traits. We did no autism testing (even though socially the school and us saw noticable improvements), because they paid no attention to that initially and then said whats the point, we have no baseline on autistic traits to compare to? Which is true, but we could have got a baseline before we upped dose in January. But they didn't, geuss it doesn't matter since he is recommending we continue anyway. Boy did that get long, sorry..... > Quote Link to comment Share on other sites More sharing options...
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