Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 Hi , Will has myoclonic seizures, he has had absence seizures but his true diagnoses is myoclonic. He started having them at 9 months old. he is now 3. I was told you have to go in the hospital for 4 weeks to start the diet? Take Care Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 We've added carnosine at the recommended dosage (400mg 2x a day) and have seen nothing. I understand it takes a while to see improvements, but I saw it immediately in my younger son. We'll wait a while and see... Marina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 Lori, had mycolincs and absence too. It takes 2 or 3 days to start the diet it the hospital. Where do you live?? We went to JHOP the first time. Bad experience. The second time we went to Lake Forest Hospital in Chicago. Also bad experience. is on a low ratio. Both times we started at a 4:1 and he got really ketotic, then anorexic, then dehydrated. BUt both times, his seizures stopped. Well, after we stopped the diet, his seizures came back so we started him on the Atkins diet for awhile and that worked, then we worked up to a 1:1 ratio and it is working great. Its really not bad and you can make soft foods for him. Let me know if you want any info or if I can help Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 Okay, let me ask a dumb question here....what is carnosine and what does it do? Thanks, Becky ----- Original Message ----- We've added carnosine at the recommended dosage (400mg 2x a day) and have seen nothing. I understand it takes a while to see improvements, but I saw it immediately in my younger son. We'll wait a while and see... Marina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 One more.... http://www.smart-drugs.com/info-carnosine.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2002 Report Share Posted October 2, 2002 I emailed Jomar and they said that there Carnosine is just that only Carnosine powder but capsules have Mag sterate in them. I also emailed Carn-Aware and I'm waiting for a response Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2002 Report Share Posted October 2, 2002 Good question and I am so glad you asked this. I don't have the answer, but I hope to use carnosine in the near future and would like to be sure I give the safest one also. I look forward to the answer. Kim -- In @y..., PL9071@a... wrote: > Hi > I have posted different articles about the Carnosine but now my question is > Where is everyone getting there's. > I got my first set from Carn-Aware, I heard about Beyond-a-century.com, there > is Jomar Labs.com > I'm just curious I plan on still giving it to Will but I want to make sure I > give him the safest one available. > Thanks > Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 , There have been a number of posts recently on the gfcfkids site from parents that are using this with their kids. Maybe you could find some info there that would help. Barb carnosine There was a show on this week on Global about a test group of children using a supplement called Carnosine. Here is the research abstract http://www.carn-aware.com . The studies were done by Dr.Chez in Chicago, the results were impressive. I have had several calls from other parents locally asking about it. Is anyone on this list familiar with it? I would appreciate your input. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 Carnosine is not the same as carnitine is it?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2002 Report Share Posted October 20, 2002 Kathy, Is your child apraxic, speech delayed, austic, ... I use CLO ProEFA ProEPA and Nuthera with p5p. However, I started with the GFCF diet and my apraxic and speech delayed child turned around miraculously. Now we are off the diet but use enyzmes. I added fish oil about a year ago and we saw great gains in expressive language, and balance and gross motor. I am considering carnosine but some well documented articles posted here, one which the author was Jon Pangborn really scared me so I am waiting to get more info. My point in writing you was if you havent tried going Gluten Free and Casein Free with diet or using enzymes (I use the one by HoustonNI) you might want to try that before the carnosine. Good luck! > Does anyone have info on if you are not deficient in carnosine, will > it work? I've tried almost everything from CLO to ProEFA, ProEPA > combo, now on 4 EFALAX, Supernuthera, DMG, 5-HTP (any thoughts on 5- > HTP), SECRETIN and starting on Monday will be seeing a Chiropractor > for cranial-sacral and adjustments. Would like to try carnosine but > has normal numbers on his bloodwork. Any thoughts are > welcome. Thanks, You are all amazing. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2002 Report Share Posted October 21, 2002 Hi , I agree with ...many parents have used the interventions you describe but in conjunction with a gfcf diet . My son had very little effect from supplements until we started to reintroduce after a period of gfcf .( I guess until his gut was functioning properly he couldn't process these properly !) I would personally also recommend that you establish gfcf before you try enzymes. I know that many would take a contrary view but my reason is that my Charlie is one child who still cannot tolerate gluten or casein , even WITH enzymes, so establishing gfcf first will allow yopu to be clear whrther he has a prob with gluten or casein before you see if enzymes will help it . The urine peptides test from www.greatplainslaboratory.com (or ARU at Sunderland University in the UK )will tell you if your child is likely to benefit- rather than any blood tests. Good luck with whatever you try ! Regards Deborah > > Does anyone have info on if you are not deficient in carnosine, will > > it work? I've tried almost everything from CLO to ProEFA, ProEPA > > combo, now on 4 EFALAX, Supernuthera, DMG, 5-HTP (any thoughts on 5- > > HTP), SECRETIN and starting on Monday will be seeing a Chiropractor > > for cranial-sacral and adjustments. Would like to try carnosine but > > has normal numbers on his bloodwork. Any thoughts are > > welcome. Thanks, You are all amazing. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2002 Report Share Posted October 21, 2002 There is lots about carnosine at http://www.speechville.com -most from the CHERAB site. Speechville has a search function for the site which makes it easy to find what you are looking for! Also just an easy diet tip for those parents of late talkers that don't even know what a gfcf diet or carnosine is yet -but have heard of EFAs: If you are supplementing with EFAs -try to decrease the amount of fried or greasy foods that are loaded with saturated fats like french fries or doughnuts. The " bad " saturated fats compromise the positive effects of the " good " polyunsaturated fats -PUFA (the essential fatty acids -EFAs) If you don't have your child on a special diet and once in a while take your child to Mcs etc. you can still buy a happy meal - just take most of the french fries out and only leave a few. Just don't let them see you do that or you blew it! (Little kids don't have a clue how many french fries they are supposed to get unless they can compare) Due to all the recent talk on diet and what is right and wrong -Dr. Agin is asking some of the researchers in this area to address this for our group! I'll keep you all posted. I like Deborah's ending -so ditto and " Good luck with whatever you try! " ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 This is only my second post and I'm still reading and learning lots of stuff. I went ahead and bought the Coromega for my son, and some carnosine. He makes almost no sounds at all, so we've got nothing to lose. He's also a resiliant, fairly-healthy kid, and I'm glad that I don't have to worry about what I give him as much as some of the other parents, whose posts I read. I have a question about the tip you posted, namely the balance of fats in the diet. What I'm wondering is...is it possible that whoever provided you that info was extrapolating from the advice that's given to heart patients...when it might not hold true for apraxic kids? I mean, I've seens tons of stuff written about the balance between diferent kinds of fats for adults who are worried about their hearts, but do we have a clue about how fatty acids get into the neurological system and make those myelin sheaths? If my kid's neurological system needs Omega 3 and 6 fatty acids, could it be enough just to get them into his system without limiting other fats? I'd really like to see some research papers, links, whatever... Since my kid is hyperactive he uses a lot of calories, and his pediatrician has even been concerned about his weight gain. I don't want to take away his french fries unless I really have to! If I swipe his fries, I'll be defeating my own diet, too. LOL! Thanks for all the info. > There is lots about carnosine at http://www.speechville.com -most > from the CHERAB site. Speechville has a search function for the > site which makes it easy to find what you are looking for! > > Also just an easy diet tip for those parents of late talkers that > don't even know what a gfcf diet or carnosine is yet -but have heard > of EFAs: > > If you are supplementing with EFAs -try to decrease the amount of > fried or greasy foods that are loaded with saturated fats like > french fries or doughnuts. The " bad " saturated fats compromise the positive > effects of the " good " polyunsaturated fats -PUFA (the essential fatty > acids -EFAs) > > If you don't have your child on a special diet and once in a while > take your child to Mcs etc. you can still buy a happy meal - > just take most of the french fries out and only leave a few. Just don't let them see you do that > or you blew it! (Little kids > don't have a clue how many french fries they are supposed to get unless they can compare) > > Due to all the recent talk on diet and what is right and wrong -Dr. Agin is > asking some of the researchers in this area to address this for our > group! I'll keep you all posted. > > I like Deborah's ending -so ditto and " Good luck with whatever you > try! " > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 Sounds good Suan - keep us updated on progress Mandi in UK > Listmates, > For those of you who are interested in carnosine, I > just wanted to give you an update. I started my > non-verbal son on it 9 days ago. He's only up to > 250mg/day, but I've already seen an increase in > socialization. He's starting to play with kids at > preschool, which he's never done. He always liked > being around other kids, but didn't really play with > them (except for his sister). Also, today I put on an > alphabet video, which he's seen many times. Right > after the opening credits and music, the video starts > by showing each letter, one at a time, while the > narrator says the letter. Well, after the intro > music, he said " A " before they even showed the letter! > Coincidence??? > BTW, we've chelated 10 rounds so far. > Unfortunately, there was also some self-biting and > hitting today, which we haven't seen in a while. It > only shows up if he's getting sick or reacting to a > new supplement. I'll be keeping a close eye on him > for the next few days to decide which it is! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2002 Report Share Posted November 9, 2002 I am new to this and was wondering if you could explain the GFCF diet and where I can find more information about it. Thank You Heidi, mommy to 2 1/2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2002 Report Share Posted November 9, 2002 > I am new to this and was wondering if you could explain the GFCF >diet and where I can find more information about it. I believe that the addy for this is www.gfcf.com Marj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2002 Report Share Posted November 9, 2002 Hi , It is gluten free casein free ( although it actually involves excluding gluten, casein , MSG and artificial sweetners) . It is based on the premise that some kids display certain behaviours because of their inability to process certain proteins properly , primarily those in gluten and casein ( milk products ) .It does not help every child, and it is not for every family , but many parents do report success with reducing autistic triats , improving speech , communication , sociabilty and bowel problems. There are tests you can do if you want to see if it may help . A good site is www.autismmedical.com. It is UK based but it does have some good info and links Regards Deborah > I am new to this and was wondering if you could explain the GFCF diet and > where I can find more information about it. > > Thank You > > Heidi, mommy to 2 1/2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 > We have been doing chelation using the Andy protocol and stopped last > week to try carnosine. We're up to about 200 mg of carnosine twice a > day and have been seeing some very good language - we had one of our > best short conversations ever about art galleries - she wanted to > know what an art gallery was - was it like an art fair, etc.!!! Are > there any negatives to using carnosine? Can she take it while doing > chelation? She can take while chelating > > Thanks, > Terry, mom to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2002 Report Share Posted November 18, 2002 May I ask what your 5 yr. old weighs, and what dose you give him? And where you get your carnosine? I've been thinking of trying it, but I think yours is the first report of the effects on a nonverbal child like my boy. Thanks, s wrote: > Just thought I would post a couple of notable happenings with Carnosine - I introduced it about a month ago - I have two Autistics > 9yrs and 5 yrs. 9yrs is very verbal and doing well anyway so its a bit hard to judge but I can say he has settled down nicely seems calmer sleeping really well etc. not that he was too bad before. But my 5 yr old non verbal - who would pop out the very occasional no is actually repeating sounds nearly everytime I try with him and we have had a few words - not consistent but something is happening there. Also we have a coloured stacker with 5 red, 4 orange, 3 yellow tow green 1 blue - and I had tried and given up on the colour matching - but last weekend he gave me his pecs picture for this toy and sat down and consistently colour matched over and over really enjoying that he could do this so I stepped in with " on " " on " etc everytime he put one on top and we got a few " ons " out of him as well as the perfect matching. > > Also he is just so much more there in fact I am just not used to him bossing me around - want want want directing me etc. and lots of cuddles and generally in my face. Oh stamping his feet when I say no! > > Also we have a spa pool and I hid his pecs picture because this you just can't do all the time - so he carried inside his little inflatable arm band and a picture of the toilet! so yes he got a swim. He also did this for going outside the other day he gave me his picture of his rideon car which is outside and so I opened the door and he ran out - he just new I would open the door. So you see something is happening and its really big!. > > My boys have terrible stomachs and cannot tolerate allot of supplements but this does not hurt there stomachs at all. > > Regards > > Terri NZ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2002 Report Share Posted November 18, 2002 Terri, it is so exciting to read about your results. I am also trying carnosine with my two autistic kids, 3 and 5. It's a bit difficult to comment on what I see but I do believe that my 3yo has been less echolalic lately and now initiates conversations more often and more appropriately. My 5yo seems to fight me less. I am not up to the full dose with them but I started very " low and slow " over a couple of weeks. , I ordered my carnosine from Beyond-a-Century, 1-800-777- 1324. My 5yo weighs 50 pounds and I plan on having him on 2 doses of 200 mg each eventually. Could someone tell me if it's the right dose, please? Also, what would be the right dose for a 30-pound child? Natasha > > > Just thought I would post a couple of notable happenings with Carnosine - I introduced it about a month ago - I have two Autistics > > 9yrs and 5 yrs. 9yrs is very verbal and doing well anyway so its a bit hard to judge but I can say he has settled down nicely seems calmer sleeping really well etc. not that he was too bad before. But my 5 yr old non verbal - who would pop out the very occasional no is actually repeating sounds nearly everytime I try with him and we have had a few words - not consistent but something is happening there. Also we have a coloured stacker with 5 red, 4 orange, 3 yellow tow green 1 blue - and I had tried and given up on the colour matching - but last weekend he gave me his pecs picture for this toy and sat down and consistently colour matched over and over really enjoying that he could do this so I stepped in with " on " " on " etc everytime he put one on top and we got a few " ons " out of him as well as the perfect matching. > > > > Also he is just so much more there in fact I am just not used to him bossing me around - want want want directing me etc. and lots of cuddles and generally in my face. Oh stamping his feet when I say no! > > > > Also we have a spa pool and I hid his pecs picture because this you just can't do all the time - so he carried inside his little inflatable arm band and a picture of the toilet! so yes he got a swim. He also did this for going outside the other day he gave me his picture of his rideon car which is outside and so I opened the door and he ran out - he just new I would open the door. So you see something is happening and its really big!. > > > > My boys have terrible stomachs and cannot tolerate allot of supplements but this does not hurt there stomachs at all. > > > > Regards > > > > Terri NZ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 We had pretty much the same affect. Maybe the three of us should compare notes off-list to see if we can come up with some other common denominators and then post those. It could help other parents in their decision process. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 My experience with Carnosine was not very good either. I only gave it to my son (4 yo) for 3 days (about 100mg), because..... The first day he was a little nervous and he couldn't sleep. The second day he was a little nervous and emotional and he peed the bed during the night. The third day I couldn't make him to concentrate to do things and then at school he peed his pants (which Denis NEVER does) and he again peed the bed at night. So... I just stopped it. I do plan to try it again in the future, just to be sure, but I don't put too much hope into it anymore. I don't think it works for us. Valentina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2002 Report Share Posted November 21, 2002 > We had pretty much the same affect. Maybe the three of us should compare > notes off-list to see if we can come up with some other common denominators > and then post those. It could help other parents in their decision process. > Please do this. Thoughtful information on what happened with real people is invaluable, and unfortunately something seldom available from physicians for a variety of reasons. Thus the only real help other parents are going to get is if you do this. Andy .. . . . . . . .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2002 Report Share Posted November 22, 2002 | My experience with Carnosine was not very good either. | I only gave it to my son (4 yo) for 3 days (about 100mg), because..... The | first day he was a little nervous and he couldn't sleep. The second day he | was a little nervous and emotional and he peed the bed during the night. The | third day I couldn't make him to concentrate to do things and then at school | he peed his pants (which Denis NEVER does) and he again peed the bed at | night. | So... I just stopped it. I do plan to try it again in the future, just to be | sure, but I don't put too much hope into it anymore. I don't think it works | for us. Somewhere (I can't recall where) I read of a woman who tried Carnosine on both her ASD son and NT teen daughter. The daughter had a 2 week long die-off detox type reaction, after which she both felt and functioned better. This experience, plus the hyperactivity and other bad reactions reported here, would imply that you need to start out with very tiny amounts of carnosine to those who have reacted badly to it, to minimize the detox reaction. Once they tolerate the tiny dose, gradually increase it. I have taken a 500 mg. capsule of carnosine on 2 occasions and was extremely tired the entire day. I plan to retry this at night soon. I heard that Carnosine detoxes the long chain fatty acids, which our kids have in excess. My daughter sees Dr. Chez's associate, and he told me that you should see benefits with Carnosine after 8-12 weeks use. I told him that I had my 60 pounder on 1000 mg/day and he said half of that might be better. She's been on it for a few months now, with no obvious ill effects, and she's shown improvements during that period (but then we do so many things, who knows why?). I'm using Vitaminshoppe's carnosine, as she already gets E and Zinc, and her neuro said this was fine. K. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 100mg/kg for a rat for therapy of damaged brain. Title Carnosine Protects the Brain of Rats and Mongolian Gerbils against Ischemic Injury: After-Stroke-Effect.[Article] Source Neurochemical Research. 30(10):1283-1288, October 2005. Abstract Carnosine, a specific constituent of excitable tissues of vertebrates, exhibits a significant antioxidant protecting effect on the brain damaged by ischemic-reperfusion injury when it was administered to the animals before ischemic episode. In this study, the therapeutic effect of carnosine was estimated on animals when this drug was administered intraperitoneally (100 mg/kg body weight) after ischemic episode induced by experimental global brain ischemia. Treatment of the animals with carnosine after ischemic episode under long-term (7-14 days) reperfusion demonstrated its pronounced protective effect on neurological symptoms and animal mortality. Carnosine also prevented higher lipid peroxidation of brain membrane structures and increased a resistance of neuronal membranes to the in vitro induced oxidation. Measurements of malonyl dialdehyde (MDA) in brain homogenates showed its increase in the after brain stroke animals and decreased MDA level in the after brain stroke animals treated with carnosine. We concluded that carnosine compensates deficit in antioxidant defense system of brain damaged by ischemic injury. The data presented demonstrate that carnosine is effective in protecting the brain in the post-ischemic period. Mediated of course. Source Neurochemical Research. 30(10):1339-1345, October 2005. Abstract Carnosine ([latin sharp s]-alanyl-histidine) and homocarnosine ([gamma]-aminobutyryl-histidine) are major constituents of excitable tissues, brain and skeletal muscles, but their physiological functions are yet unknown. Using primary cell culture systems, synthesis and uptake of carnosine exclusively by glial cells could be demonstrated. Uptake of carnosine was found to be mediated by a high affinity, energy-dependent dipeptide transport system, subsequently identified as the peptide transporter PepT2. Clearly I need to know a great deal more before I try this, since it passes the blood brain barrier. Regards Quote Link to comment Share on other sites More sharing options...
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