Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 Hi Jodi, I very very very rarely post, been a " lurker " here for over 9 years (let alone give " testimonials " ) so hopefully that conveys what I feel about nv. My son was diagnosed almost 10 years ago (on Halloween to be exact) with a marker chromosome that is not related to a specific syndrome but that manifests itself in multiple ways including communication difficulties, sensory integration, hypotonia, gluten intolerance and some cognitive impairment. At the time I was a marketer and writer for a national magazine so was used to doing research, quickly switched from researching celebraties and consumer products to researching everything and anyone who might help (we were given a rather grim prognosis by multiple professionals and told effectively to " do what you can but remain realistic " ). We have seen many professionals, tried homeopathic remedies, biomedical interventions, diet changes, varying therapies etc. All done with tons of research, some skeptism but mostly proceeding (or continuing with something) by using my " gut " on what was working and what was worth doing (from a cost and stress on sean/our family standpoint). Most things have either had a slight change or none with a few exceptions...fish oils (amazing change in him on these, uses Nordic Naturals EPA and 3-6-9 Complete), floortime therapy (aka DIR), hippotherapy (if only we could afford a horse), gluten-free diet (he has an " intolerance " never went so far as to get a full blown celiac diagnosis) and now NV. Other things have helped over time (e.g. B12 shots) but when we take a break (I always do to see if it is truly the intervention that is working) we stop (or rethink) if there is no regression. Our family has never " benefited " from any of these things other than the benefits has received - which are worth more than anything. I am telling you this so you understand that we are also skeptics and encourage research, research, research, but really discourage knocking what works for others...because you never know. E.g our school district was convinced " Floortime " was a crock and ABA was the way to go for . Years of meetings, not so friendly debates, advocates, reports etc has (and other children who have benefited from our " fight " ) now thriving in a DIR based program while other children (at the same school) continue to make strides using ABA. completely shutdown on ABA so we knew we need to research something different and are soooooo glad we did. I also was skeptical about NV, the cost, how it was sold everything down to the auto-ship seemed " suspect " to me, but reading the stories here and yes doing my own research, research, research decided to give it a try in February. has been taking 2 scoops 2x a days consistently since mid-March. Have we seen the dramatic changes some are seeing? Probably not (given 's multi-layered challenges that is to be expected...we have never ever had the " magic bullet " ) but have we seen benefits - absolutely. He turned twelve last week and this would be a natural growth period for him but he has really shot up and trimmed down. He has not really " lost " weight instead he looks more toned...finally something to help with the hypotonia. In his case NV was not about weight loss but more about building muscle tone (a real problem for him, he has difficulty sitting a chair for periods of time...slumps over). So in this way he looks healthier, tires less when he swims, even is giving another try to his adapted bicycle...motor planning still an issue but he seems to stick with it more and have better stamina. This may seem " small " but for a boy with 2 very active brothers any chance for him to be a participant rather than a spectator is priceless. In fact (other than the growth spurt) most of his changes would be considered " small " by most posters here but for any change is monumental. We have seen improvements in attention, imaginative play (his brother asked what he was doing the other day and replied " I am pretending to dig for treasure " this is nothing short of amazing...we were not even sure he knew what " pretending " was other than that he never seemed to hit that milestone), and just in participating in things around him (first time ever has requested to dress for Halloween). Are these things from NV, I don't know but when he went off for a week this Summer he seemed to regress and kept asking for his " juicy ice cubes " (which is how we serve the NV...juice, water, ice). For now we will continue with it, I agree it is expensive but for our family (at this point) it is worth it. Not to say we will stop re-evaluating...how would we have found NV if we were not willing to try new things? While there certainly is money made in selling it I order 's through Pursuit of Research so at least I feel (hopefully correctly) that at least some of the profits are going back into research to help this very underserved population. Jodi, I am not tellingy you what to do...only you and your family can decide...but I have hopefully provided the unbiased testimonial you were requesting. I guess this very long winded post makes up for years of not positng, thanks for slogging through it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 Just want to say that I've been a member for a couple of months, and this recent message about the special Halloween-deadline offer was the first even vaguely commercial message I've ever seen here. I didn't even know NV was MLM. No one had ever asked me to sign up for anything. When I did see it, I got excited because I thought we might get a lower cost... but they're already selling it at the lowest cost they can. No one has ever pressured me to buy more, or more often. I don't mind helping to support CHERAB foundation. I do wish the product were less expensive, but I don't feel that anyone is taking advantage of here in any way. You may notice that I questioned the vitamin E levels of NV yesterday, and got an answer here that I will take into consideration. I don't take anything for granted and try to check things out. I understand your caution. Just my two cents. PS -- we're not quite up to a full dose on the NV yet, and not for very long, so I can't give a testimonial on it, but I " think " he is chattier with it. We're seeing good improvement in speech every day. I don't know if NV is helping the advances, but my son's diet is so poor, and I've never had luck getting ANY supplements into him before, so I am willing to use the NV simply to help his body grow and thrive, let alone his mind. > > > > > Hi Jodi, I very very very rarely post, been a " lurker " here for over 9 years (let alone give " testimonials " ) so hopefully that conveys what I feel about nv. My son was diagnosed almost 10 years ago (on Halloween to be exact) with a marker chromosome that is not related to a specific syndrome but that manifests itself in multiple ways including communication difficulties, sensory integration, hypotonia, gluten intolerance and some cognitive impairment. At the time I was a marketer and writer for a national magazine so was used to doing research, quickly switched from researching celebraties and consumer products to researching everything and anyone who might help (we were given a rather grim prognosis by multiple professionals and told effectively to " do what you can but remain realistic " ). We have seen many professionals, tried homeopathic remedies, biomedical interventions, diet changes, varying therapies etc. All done with tons of research, some skeptism but mostly proceeding (or continuing with something) by using my " gut " on what was working and what was worth doing (from a cost and stress on sean/our family standpoint). Most things have either had a slight change or none with a few exceptions...fish oils (amazing change in him on these, uses Nordic Naturals EPA and 3-6-9 Complete), floortime therapy (aka DIR), hippotherapy (if only we could afford a horse), gluten-free diet (he has an " intolerance " never went so far as to get a full blown celiac diagnosis) and now NV. Other things have helped over time (e.g. B12 shots) but when we take a break (I always do to see if it is truly the intervention that is working) we stop (or rethink) if there is no regression. Our family has never " benefited " from any of these things other than the benefits has received - which are worth more than anything. I am telling you this so you understand that we are also skeptics and encourage research, research, research, but really discourage knocking what works for others...because you never know. E.g our school district was convinced " Floortime " was a crock and ABA was the way to go for . Years of meetings, not so friendly debates, advocates, reports etc has (and other children who have benefited from our " fight " ) now thriving in a DIR based program while other children (at the same school) continue to make strides using ABA. completely shutdown on ABA so we knew we need to research something different and are soooooo glad we did. I also was skeptical about NV, the cost, how it was sold everything down to the auto-ship seemed " suspect " to me, but reading the stories here and yes doing my own research, research, research decided to give it a try in February. has been taking 2 scoops 2x a days consistently since mid-March. Have we seen the dramatic changes some are seeing? Probably not (given 's multi-layered challenges that is to be expected...we have never ever had the " magic bullet " ) but have we seen benefits - absolutely. He turned twelve last week and this would be a natural growth period for him but he has really shot up and trimmed down. He has not really " lost " weight instead he looks more toned...finally something to help with the hypotonia. In his case NV was not about weight loss but more about building muscle tone (a real problem for him, he has difficulty sitting a chair for periods of time...slumps over). So in this way he looks healthier, tires less when he swims, even is giving another try to his adapted bicycle...motor planning still an issue but he seems to stick with it more and have better stamina. This may seem " small " but for a boy with 2 very active brothers any chance for him to be a participant rather than a spectator is priceless. In fact (other than the growth spurt) most of his changes would be considered " small " by most posters here but for any change is monumental. We have seen improvements in attention, imaginative play (his brother asked what he was doing the other day and replied " I am pretending to dig for treasure " this is nothing short of amazing...we were not even sure he knew what " pretending " was other than that he never seemed to hit that milestone), and just in participating in things around him (first time ever has requested to dress for Halloween). Are these things from NV, I don't know but when he went off for a week this Summer he seemed to regress and kept asking for his " juicy ice cubes " (which is how we serve the NV...juice, water, ice). For now we will continue with it, I agree it is expensive but for our family (at this point) it is worth it. Not to say we will stop re-evaluating...how would we have found NV if we were not willing to try new things? While there certainly is money made in selling it I order 's through Pursuit of Research so at least I feel (hopefully correctly) that at least some of the profits are going back into research to help this very underserved population. Jodi, I am not tellingy you what to do...only you and your family can decide...but I have hopefully provided the unbiased testimonial you were requesting. I guess this very long winded post makes up for years of not positng, thanks for slogging through it! > > > Quote Link to comment Share on other sites More sharing options...
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