Guest guest Posted March 16, 2010 Report Share Posted March 16, 2010 Our son, ny age 12, has a syndrome called Sotos syndrome (genetic) and has no words. Most of the kids with this syndrome do speak, however. We started him on NV less than a week ago. I am writing down daily observations. Some slight changes are happening but I can't necessarily attribute them to the NV yet. He also had a seizure last night - hasn't had one for over 6 months. We are having very hot weather here where we live so it may be that he overheated. Hard to say. Also he is probably in need of having his seizure meds increased due to his growth. I plan to give a report to this group after a few weeks go by so as to get a feel for the bigger picture regarding what effect (if any) NutriiVeda is having on our son. > > Hello all, > > I started my son, Kardyn, who is five yrs old and is a syndrome baby. He is non verbal. He makes a lot of noises but no actual words unless you count the occasional mama and dada that he doesn't really seem to understand. I started him on the NV on the 11th and on day five which was yesterday he started sticking out his tongue, way out. He even seems to be what I would call " exploring " his mouth. He will even put a sucker on his back teeth and try to bite it, which he has never done any of these things before. The ST and I could never get him to stick out his tongue. He could move it, but would never actually put it out there like that. He was actually drooling a little yesterday. I had started him out on a half scoop once per day then moved him up to 3/4 of a scoop once per day. This is when I noticed his tongue and what he was doing with his mouth. > > I am not sure if this is just a coincidence or if this is actually the NV helping him. Either way I am happy. My friend, who is the one who purchased the NV for him to try sent me some post about kids seeming to find out they have a tongue and I must admit that I was impressed and it does seem that Kardyn is following the same path as some of the other children. > > Can anyone tell me how many kids, who are non verbal, have feeding issues as in not using the back teeth and not wanting food back there, and not really seeming to know that their tongue is to be used to aide in feeding, are on the NV and have had some similar results? I would also like to know what seems to be common as in what comes next after " finding " their tongue? > > I would really appreciate your feedback on this. I haven't told the ST that I have him on the NV but I called her this morning to tell her about him doing this with his tongue she was shocked. > > Thank you all very much for your help, > > a Way > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2010 Report Share Posted March 16, 2010 : My son is almost 3, and is no longer non-verbal, but it's still a work in process. We are by no means " clearly " speaking, but people can understand him more and more. My son also has feeding issues. He is extremely picky and I've recently learned he's not really chewing the few foods he eats. (I've believe it's a combo of sensory concerns and motor ability). He takes a bite, clamps down and then it either sits in his mouth for a bit or he swallows it whole. He is now in feeding therapy to remedy this. In addition, he had NO awareness of his tongue until recently. I could tell him to stick out his tongue and he'd open his mouth really big, but nothing would come out. (we've been in PROMPT therapy for 7 mos now). Since we started NV, I noticed A LOT more tongue awareness and use. It hasn't drastically help the feeding situation, but that whole thing is still new to me. He is now able to move his tongue side-to-side, stick it out, and I see him just doing general tongue play. For a while, after we started NV, I noticed he was licking EVERYTHING. Walls, chairs, his body, etc. We have definitely seen an increase in awareness and ability to use the tongue. I do want to note we started Occupational Therpay a few weeks before NV, so I can't be 100% certain it's just the NV, but I would guess a combo of both. Even today his OT was impressed with his ability (tongue-wise). Good luck! Sharon > > Hello all, > > I started my son, Kardyn, who is five yrs old and is a syndrome baby. He is non verbal. He makes a lot of noises but no actual words unless you count the occasional mama and dada that he doesn't really seem to understand. I started him on the NV on the 11th and on day five which was yesterday he started sticking out his tongue, way out. He even seems to be what I would call " exploring " his mouth. He will even put a sucker on his back teeth and try to bite it, which he has never done any of these things before. The ST and I could never get him to stick out his tongue. He could move it, but would never actually put it out there like that. He was actually drooling a little yesterday. I had started him out on a half scoop once per day then moved him up to 3/4 of a scoop once per day. This is when I noticed his tongue and what he was doing with his mouth. > > I am not sure if this is just a coincidence or if this is actually the NV helping him. Either way I am happy. My friend, who is the one who purchased the NV for him to try sent me some post about kids seeming to find out they have a tongue and I must admit that I was impressed and it does seem that Kardyn is following the same path as some of the other children. > > Can anyone tell me how many kids, who are non verbal, have feeding issues as in not using the back teeth and not wanting food back there, and not really seeming to know that their tongue is to be used to aide in feeding, are on the NV and have had some similar results? I would also like to know what seems to be common as in what comes next after " finding " their tongue? > > I would really appreciate your feedback on this. I haven't told the ST that I have him on the NV but I called her this morning to tell her about him doing this with his tongue she was shocked. > > Thank you all very much for your help, > > a Way > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2010 Report Share Posted March 16, 2010 Its been a couple of weeks since I've last posted our progress with NV. This was because we had a little set back that had nothing to due with the NV but rather a chelation challenge test that brought back many of the bad side effects (ie stimming, hyperactivity, aggression, etc) that were improving while on the NV. Its now been almost 2 weeks after the chelation challenge and we are almost back to where we were prior to this test. The NV continues to be a big WOW for us. Just the other day my daughter had a teacher who also has a child with Autism stop her and ask her " what is your secret and what have you been doing that is making such a big difference in Connor " . My daughter decided to kid with her and pretend not to know what she was talking about and asked her what she was seeing. The teacher told her in the last few weeks she has noticed Connor much more social and aware of his surroundings. My daughter told her we started him on NV and she said " Oh I've heard of that I'm going to purchase some immediately for " . We too have noticed a big increase in tongue awareness and sticking out his tongue which is a another big wow for us since he has never given us the impression that he even had a tongue. He is also non verbal so we are hoping and praying the next step might be some sounds and who knows even some words. > > > > Hello all, > > > > I started my son, Kardyn, who is five yrs old and is a syndrome baby. He is non verbal. He makes a lot of noises but no actual words unless you count the occasional mama and dada that he doesn't really seem to understand. I started him on the NV on the 11th and on day five which was yesterday he started sticking out his tongue, way out. He even seems to be what I would call " exploring " his mouth. He will even put a sucker on his back teeth and try to bite it, which he has never done any of these things before. The ST and I could never get him to stick out his tongue. He could move it, but would never actually put it out there like that. He was actually drooling a little yesterday. I had started him out on a half scoop once per day then moved him up to 3/4 of a scoop once per day. This is when I noticed his tongue and what he was doing with his mouth. > > > > I am not sure if this is just a coincidence or if this is actually the NV helping him. Either way I am happy. My friend, who is the one who purchased the NV for him to try sent me some post about kids seeming to find out they have a tongue and I must admit that I was impressed and it does seem that Kardyn is following the same path as some of the other children. > > > > Can anyone tell me how many kids, who are non verbal, have feeding issues as in not using the back teeth and not wanting food back there, and not really seeming to know that their tongue is to be used to aide in feeding, are on the NV and have had some similar results? I would also like to know what seems to be common as in what comes next after " finding " their tongue? > > > > I would really appreciate your feedback on this. I haven't told the ST that I have him on the NV but I called her this morning to tell her about him doing this with his tongue she was shocked. > > > > Thank you all very much for your help, > > > > a Way > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2010 Report Share Posted March 16, 2010 My son doesn't have a syndrome but also has feeding issues along with apraxia. His SLP has been working with him with oral speech therapy but he is the pickiest eater. Does the nutriveda help with that too? > > > > > > Hello all, > > > > > > I started my son, Kardyn, who is five yrs old and is a syndrome baby. He is non verbal. He makes a lot of noises but no actual words unless you count the occasional mama and dada that he doesn't really seem to understand. I started him on the NV on the 11th and on day five which was yesterday he started sticking out his tongue, way out. He even seems to be what I would call " exploring " his mouth. He will even put a sucker on his back teeth and try to bite it, which he has never done any of these things before. The ST and I could never get him to stick out his tongue. He could move it, but would never actually put it out there like that. He was actually drooling a little yesterday. I had started him out on a half scoop once per day then moved him up to 3/4 of a scoop once per day. This is when I noticed his tongue and what he was doing with his mouth. > > > > > > I am not sure if this is just a coincidence or if this is actually the NV helping him. Either way I am happy. My friend, who is the one who purchased the NV for him to try sent me some post about kids seeming to find out they have a tongue and I must admit that I was impressed and it does seem that Kardyn is following the same path as some of the other children. > > > > > > Can anyone tell me how many kids, who are non verbal, have feeding issues as in not using the back teeth and not wanting food back there, and not really seeming to know that their tongue is to be used to aide in feeding, are on the NV and have had some similar results? I would also like to know what seems to be common as in what comes next after " finding " their tongue? > > > > > > I would really appreciate your feedback on this. I haven't told the ST that I have him on the NV but I called her this morning to tell her about him doing this with his tongue she was shocked. > > > > > > Thank you all very much for your help, > > > > > > a Way > > > > > > Quote Link to comment Share on other sites More sharing options...
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