Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 has generalized seizures. Some call them nyoclonics, some call them atypical absence seizures-they are head drops. Yes, we are firm believers in the carnosine. It helps with his cognition. We have ran out a few times in the last couple years and we are like what is wrong with him and then realize that its the carnosine. We give him 500 mg a day and use NOW brand. I also wonder if it helps with seizure control but we are on a low dose. Dr. Chez likes to see his kids on 1000mg or higher if tolerable. gets hyper on that dose. We see improvements with his apraxia. His speech is difficult to understand but without the carnosine-it gets much worse. We also notice that without it, he drools. With it, not at all. I personallythink it helps with his body awareness because where as he would drool before, now he will just smack his lips to keep his mouth strong. It also helps with coordination. I think more with gross motor for him. He is a little clumsy on it. Well, really alot clumsy (grammar??) but without it, he falls and has less body awareness. Do I sound like a salesperson? I really think that out of all the things we've done besides the diet. the carnosine is top on my must do list. I hate to be pushy but I think you should try it with . I know has Jess on a high dose. I would start slow at 500 mg and move up. As far as the oils, we really notice that helping with speech too. I'm sure we'll add it back in but I'm on my tip toes now just trying to get seizures to go away. Hope that helps Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Hmm, food for thought - I have NO idea if we can get it here in NZ, but it sounds like it might be helpful in maybe offsetting some of the topomax side effects. Not sure still just how much adverse effect this med is actually having on , but I am pretty sure there is def room for improvement still... Carnosine has always kinda been lurking here on 'the list' but I haven't made any def enquiries about availabilty etc yet. We have a neuro appt coming up next week or the week after, I'll run it past them and see what reaction I get. PS - Really thrilled to see your posts that is improving, v exciting ----- Original Message ----- From: lloydandleslie@... To: ketogenic has generalized seizures. Some call them nyoclonics, some call them atypical absence seizures-they are head drops. Yes, we are firm believers in the carnosine. It helps with his cognition. We have ran out a few times in the last couple years and we are like what is wrong with him and then realize that its the carnosine. We give him 500 mg a day and use NOW brand. I also wonder if it helps with seizure control but we are on a low dose. Dr. Chez likes to see his kids on 1000mg or higher if tolerable. gets hyper on that dose. We see improvements with his apraxia. His speech is difficult to understand but without the carnosine-it gets much worse. We also notice that without it, he drools. With it, not at all. I personallythink it helps with his body awareness because where as he would drool before, now he will just smack his lips to keep his mouth strong. It also helps with coordination. I think more with gross motor for him. He is a little clumsy on it. Well, really alot clumsy (grammar??) but without it, he falls and has less body awareness. Do I sound like a salesperson? I really think that out of all the things we've done besides the diet. the carnosine is top on my must do list. I hate to be pushy but I think you should try it with . I know has Jess on a high dose. I would start slow at 500 mg and move up. As far as the oils, we really notice that helping with speech too. I'm sure we'll add it back in but I'm on my tip toes now just trying to get seizures to go away. Hope that helps Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 I would highly recommend the carnosine. I don't know whats working for us at the moment (shhhh) the keppra or the higher dose of carnosine, but if nothing else we certainly have seen cognitive improvements with it (in fact documented by psych testing) and thats nuttin to sneeze at You can always order online (thats what I do and I believe I have found the cheapest place to do so), then the only issue is getting it into your country. Its considered an unapproved " drug " here but we can order in small amounts for personal use , 's mom & Hill wrote: > Hmm, food for thought - I have NO idea if we can get it here > in NZ, but it sounds like it might be helpful in maybe offsetting some > of the topomax side effects. Not sure still just how much adverse > effect this med is actually having on , but I am pretty sure > there is def room for improvement still... > Carnosine has always kinda been lurking here on 'the list' but I > haven't made any def enquiries about availabilty etc yet. We have a > neuro appt coming up next week or the week after, I'll run it past > them and see what reaction I get. > > > PS - Really thrilled to see your posts that is > improving, v exciting > ----- Original Message ----- > From: lloydandleslie@... > To: ketogenic > > has generalized seizures. Some call them nyoclonics, > some call > them atypical absence seizures-they are head drops. Yes, we are > firm > believers in the carnosine. It helps with his > cognition. We have ran > out a few times in the last couple years and we are like what is > wrong with him > and then realize that its the carnosine. We give him 500 mg a > day and use > NOW brand. I also wonder if it helps with seizure control but we > are on a > low dose. Dr. Chez likes to see his kids on 1000mg or higher if > tolerable. > gets hyper on that dose. We see improvements with > his apraxia. > His speech is difficult to understand but without the > carnosine-it gets much > worse. We also notice that without it, he drools. With it, not > at all. I > personallythink it helps with his body awareness because where as > he would drool > before, now he will just smack his lips to keep his mouth > strong. It also > helps with coordination. I think more with gross motor for him. > He is a > little clumsy on it. Well, really alot clumsy (grammar??) but > without it, he > falls and has less body awareness. > > Do I sound like a salesperson? I really think that out of all > the things > we've done besides the diet. the carnosine is top on my must do > list. I hate > to be pushy but I think you should try it with . I know > has > Jess on a high dose. I would start slow at 500 mg and move up. > > As far as the oils, we really notice that helping with speech > too. I'm sure > we'll add it back in but I'm on my tip toes now just trying to > get seizures > to go away. > > Hope that helps > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 That would be one of the problems ordering online, NZ Customs here are like the Mafia. That is why I would have to run it by the neuro team at 's next clinic appt - I am not sure what difference a Drs letter would make, but it's worth a go. We may even be able to get it here, not sure - I did a quick search and came up with a lot of products that contain it, (seems to be v popular here as an anti-aging thing) but none so far where it is sold just on its own. I'll keep looking. Agreed - cognitive improvements on a psych test sure are nuttin to sneeze at, that is great. Things sure are looking up there these days aren't they? But yes, shhhhh ----- Original Message ----- From: mmc@... I would highly recommend the carnosine. I don't know whats working for us at the moment (shhhh) the keppra or the higher dose of carnosine, but if nothing else we certainly have seen cognitive improvements with it (in fact documented by psych testing) and thats nuttin to sneeze at You can always order online (thats what I do and I believe I have found the cheapest place to do so), then the only issue is getting it into your country. Its considered an unapproved " drug " here but we can order in small amounts for personal use , 's mom Quote Link to comment Share on other sites More sharing options...
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