Guest guest Posted March 23, 2002 Report Share Posted March 23, 2002 , I went and did a search for info on carnosine and some of it is really interesting. Sounds pretty impressive and I'm anxious to help Katera make cognitive gains in any way I can. One of the articles had the following comment, however: "Specifically, carnosine reacts with and inactivates aldehydes and ketones." Which makes me wonder why the doc would want to use it with the diet.... since we are basically wanting to bathe the brain in ketones.... although I know ketones are basically waste products and aren't always good things. Still... I just wonder if it would interfere with being in ketosis. Just curious. I'd be really interested if you ever had a chance to ask him about this. There's quite a few places on the net that are selling it, but some are VERY expensive so if anyone is out shopping for it, check around. The prices vary widely. I think I may check further on this but may hold off until we are closer to weaning the diet. Here's some links if anyone wants to read the articles.... the second link is the one that had the comment about ketones. www.lef.org/magazine/mag2001/jan2001_report_carnosine_1.html http://smart-drugs.net/ias-carnosine-article.htm www.naturalhealthconsult.com/Monographs/Carnosine.html Patti Re: Vit and hyperactivity Patti,Carnosine is an amino acid. Our neurologist has been doing research using it. It goes directly to the area of the brain that controls learning and language. I can't be more specific than that. It has been used with (mom to , 4 Atkins modified diet, almost off depakote, carnosine, and 17 mos-both the sweetest little boys) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 Patti, We buy ours from Chez and it is $40 for 60 capsules that are 200 mg. He has never mentioned the ketone issue but I will be sure to mention that to him next time we are there (early May). I do know that several of his patients are using it along with the diet and I don't know of any who have had the issue of it effecting the ketone levels. KNOCK ON WOOD. Each bottle lasts us 7.5 days so that is $160 per month or 5.30 per day. Pretty expensive stuff. But, we do it. I really believe in what he is doing and I think that some how, some way soon he will find a cure for epilepsy. He is working on a pill that comes out later this year that mimics ketosis so that kids could be on lower ratio diets. Wouldn't that be great :0) Well, gotta run-trying to cook a decent dinner for my hubby that doesn't burn and is all cooked at the same time. WISH ME LUCK!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Hi everyone, I just wanted to share that Dill emailed me and asked me to pass on to you all that Karly hasn't had a seizure in a weeksince she started taking it and her alertness is good. Isn't that great. I also heard from someone else that they were seeing good things too. I have to tell you that we did a little experiment with . We ran out for about a week and half and Chrisotpher fell apart. His behavior was terrible. He didn't have seizures but his speech got slurry (he has apraxia) and he was so moody. We started him back on it on Thursday at a lower dose and working back up. Honestly, we needed to know what was causing what because we started the diet and carnosine at the same time. We definately know now that there is a link between his speech, moods and the carnosine. I am going to watch the ketones b/c they were large while he was off it. Anyways, I just thought I would pass this on for those of you who are interested. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 , I am very interested in how much carnosine (and how often throughout the day) you give and how much Karly receives. How old is and Karly? How much do they weigh? Do both of you give carnosine without having lab work done for it, or are you on a routine basis having carnosine levels done? We are presently giving our 7-year-old daughter, 40 lb, 250mg L-carnitine twice a day. We have noticed a difference in her seizures being better controlled. But, I have no idea how much is too much. Thanks for your help. Rhonda Philippines -----Original Message-----From: lloydandleslie@... Sent: Saturday, April 13, 2002 10:55 AMTo: ketogenic Subject: carnosineHi everyone,I just wanted to share that Dill emailed me and asked me to pass on to you all that Karly hasn't had a seizure in a weeksince she started taking it and her alertness is good. Isn't that great. I also heard from someone else that they were seeing good things too.I have to tell you that we did a little experiment with . We ran out for about a week and half and Chrisotpher fell apart. His behavior was terrible. He didn't have seizures but his speech got slurry (he has apraxia) and he was so moody. We started him back on it on Thursday at a lower dose and working back up. Honestly, we needed to know what was causing what because we started the diet and carnosine at the same time. We definately know now that there is a link between his speech, moods and the carnosine. I am going to watch the ketones b/c they were large while he was off it.Anyways, I just thought I would pass this on for those of you who are interested. "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 Rhonda, just jumping in..... carnosine is NOT the same thing as l-carnitine. Two totally different amino acids. Patti RE: carnosine , I am very interested in how much carnosine (and how often throughout the day) you give and how much Karly receives. How old is and Karly? How much do they weigh? Do both of you give carnosine without having lab work done for it, or are you on a routine basis having carnosine levels done? We are presently giving our 7-year-old daughter, 40 lb, 250mg L-carnitine twice a day. We have noticed a difference in her seizures being better controlled. But, I have no idea how much is too much. Thanks for your help. Rhonda Philippines Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2002 Report Share Posted April 13, 2002 Patti, Thanks for the clarification and as always I'm glad that you jump in. I'm still interested in getting the answers to my questions about carnosine. Though they are different I imagine that they are similar in the ways that a person should be careful with them. As far as I know, carnosine is not available here. But, I have read previous posts on this list about carnosine and will consider strongly switching to it when it is available to us. Rhonda Philippines -----Original Message-----From: Patti Sent: Saturday, April 13, 2002 12:42 PMTo: ketogenic Subject: Re: carnosine Rhonda, just jumping in..... carnosine is NOT the same thing as l-carnitine. Two totally different amino acids. Patti RE: carnosine , I am very interested in how much carnosine (and how often throughout the day) you give and how much Karly receives. How old is and Karly? How much do they weigh? Do both of you give carnosine without having lab work done for it, or are you on a routine basis having carnosine levels done? We are presently giving our 7-year-old daughter, 40 lb, 250mg L-carnitine twice a day. We have noticed a difference in her seizures being better controlled. But, I have no idea how much is too much. Thanks for your help. Rhonda Philippines "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2002 Report Share Posted April 13, 2002 Rhonda, L-carnitine and carnosine are not the same thing. Carnitine (or carnitor) I believe, not sure, is one of those things that you can test for and your body can be deficient in. I know the diet and some meds can deplete the body of it. Carnosine is an amino acid. There was a post a few weeks back about it. I will post and let you know if I can locate the web sites. We are giving 800 mg in am and 400 at pm. We were giving him 800 at both but it was causing him to get " hyper " and he couldn't sleep. So, we went to 400 at night. Our neurologist suggested this to us. He is doing some research on carnosine. Supposedly, it goes straight to the area of the brain that controls motor, cognition and speech. This is very basic but I'm not one of those scientific types like DeEtte and Patti (kudos to them). I'm learning and trying to get there. Well, I'll let you know. I'm not sure about Karly, I'll ask her. :0) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2002 Report Share Posted April 13, 2002 Rhonda, From what I've read, carnosine is really very safe. I started Katera on it just this week. Both carnitine and carnosine are aminos that are found in meat (hence the "carno" prefix). Here's some links to articles on carnosine that I've posted before.... Carnosine article by s Kyriazis MDhttp://smart-drugs.net/ias-carnosine-article.htm Carnosinewww.healthwell.com/healthnotes/Supp/Carnosine.cfm The Super Carnosine Pages. Information about Carnosinewww.naturalhealthconsult.com/Monographs/Carnosine.html I think there is actually more problems or side effects related to carnitine and some say you shouldn't use the over the counter l-carnitine at all. I can't remember why.... maybe someone else has saved something. I know that Carnitor, the prescription carnitine, gave Katera horrible diarreah. Patti RE: carnosine Patti, Thanks for the clarification and as always I'm glad that you jump in. I'm still interested in getting the answers to my questions about carnosine. Though they are different I imagine that they are similar in the ways that a person should be careful with them. As far as I know, carnosine is not available here. But, I have read previous posts on this list about carnosine and will consider strongly switching to it when it is available to us. Rhonda Philippines Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 I ordered the Carnosine from NOW. It was only 15 bucks. Worth a try I'd say. -----Original Message-----From: sentto-467350-12364-1019506905-janepraeger=compuserve.com@... [mailto:sentto-467350-12364-1019506905-janepraeger=compuserve.com@...]On Behalf Of DillerSent: Monday, April 22, 2002 3:08 PMTo: ketogenic Subject: Re: carnosine I can't say I know a lot about this. I have read this article that I sent to the group which was written by Dr. Chez based on his study. I believe there are a few in this group who may see him as a neurologist. I can't think of which state he is in right now. Maybe someone can answer that. The only thing I can say I based my decision on to try this supplement, which IS NOT a prescription, (it is an amino acid) is that we have tried everything else. I have no interest in this supplement other than it is helping right now. (don't know what the future will hold) I have been able to lower her depakote from 5 capsules two times a day to 2 capsules two times a day and, we have the same or sometimes better control of seizures. Karly has myoclonic and tonic clonic seizures with a messed up EEG. (lots of spike and slow waves). She has been taking the carnosine for about 3 1/2 weeks now. We have not seen the neuro yet. We go back in June. I will tell him about it then if she is still having some success. IF you decide to try it please post once a week or everyother to say what you noticed. Blessings to all carnosine Hi, I am new to the Yahoo group, we haven't actually started the diet yet, we've been on the brink twice but for a variety of reasons (none of them related to reluctance on our part!) we've not gone through, but I do think the diet is in our very near future. Anyway, my daughter is 3 years old, has myoclonic seizures, generalized tonic-clonic, atypical absence, but mostly lots of drop seizures. She's been controlled briefly (days to a week) on various anti-convulsants, most recently Topamax (she's also on Lamictal and Keppra). I was intrigued by the information on carnosine and had a couple questions:1. What journal was this study published in? I'd love to read more details; and2. Does carnosine necesarily need to be prescribed or followed by a neurologist? Is it available OTC? Any info about starting doses (i.e. is it based on kg body weight?)I'm amazed by the courage and determination of all the parents out there. This group is a great resource!(Allie's mom) " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Can you give your info from the site which you ordered off of? There are a few different places that sell NOW brand of carnosine but, some are more expensive. www.sedonalive.com is one place to order. Theirs is 15 dollars. carnosine Hi, I am new to the Yahoo group, we haven't actually started the diet yet, we've been on the brink twice but for a variety of reasons (none of them related to reluctance on our part!) we've not gone through, but I do think the diet is in our very near future. Anyway, my daughter is 3 years old, has myoclonic seizures, generalized tonic-clonic, atypical absence, but mostly lots of drop seizures. She's been controlled briefly (days to a week) on various anti-convulsants, most recently Topamax (she's also on Lamictal and Keppra). I was intrigued by the information on carnosine and had a couple questions:1. What journal was this study published in? I'd love to read more details; and2. Does carnosine necesarily need to be prescribed or followed by a neurologist? Is it available OTC? Any info about starting doses (i.e. is it based on kg body weight?)I'm amazed by the courage and determination of all the parents out there. This group is a great resource!(Allie's mom) "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
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