Guest guest Posted February 10, 2010 Report Share Posted February 10, 2010 Anni thank you SO MUCH for sharing here! I also wanted to add the other things that you shared with me as I believe all of us need to start keeping a journal as the surges appear to be in specific areas that we are all seeing (I'll list them below) The points you made to me that really stuck with me 1. Your Prompt therapist who is normally " quiet and controlled " not only called you in a way that she never did before -but that she had " tears in her eyes " when she told you!!!! 2. When I was talking to you about the increase in sense of humor being reported you told me about how your son was crawling on your back laughing or something but had never done that before due to his motor planning (please share here as I probably wrote it wrong what he did!) 3. Your husband who was a skeptic (which seems to be par for the course for most of us to start huh??) said he sees the change in him! I believe what we need to do - what I'm going to try to start doing -is compiling the results we are all seeing because I was told that there may be a interest to validate what we are seeing with research...I mean we have Dr. Chopra and Dr. Simon and all who I'm sure are just as shocked as anyone else about what is going on. There has to be a logical explanation as to why this is working...and so quickly. I mean a day to a few days? That's crazy right? Crazy in a good way I mean. Anyway please everyone start sharing child's age -diagnosis with your reports. I can put everyone together with first name and first initial of last name and let me know if it's OK if any of the doctors wanted to contact you. Areas to look for surges in (in most cases multiple areas at once) Please keep a journal to report surges in these or any other areas I may have forgotten or missed. SPEECH articulation, complexity and sophistication of sentence structure LANGUAGE better understanding of written and spoken word, development of better reading and writing skills ACADEMICS/LEARNING reported surges in all areas of school FINE AND GROSS MOTOR SKILLS also multi tasking SENSE OF HUMOR both catching subtle humor and wanting to make others laugh -joking around AWARENESS OF SURROUNDINGS (for autism) reported following gaze and more interactions FACIAL EXPRESSIONS (for those with oral apraxia) instead of blank stares when not engaged in conversation (non verbal expressions) FOCUS on task, more willing to listen and try MULTI TASKING (for apraxia as this is something typically not done or done well) SOCIAL wanting to participate with others via play and communication MOOD reported seems " happier " for a number DEVELOPMENTAL CATCHING UP for those that never went through stages -reportedly going through them for the first time. Also please report for anyone who ISN'T seeing any surges. How many days -age of child, diagnosis and what dosage. Also please report any negative you are seeing (so far we know " hyper " and in one case the child had a rash on belly but parent discontinued after 2 days so we don't know what from) I'd say to at least give product one week to work -but most of us do notice surges in a few days. But please share " no change in any area " results too -the number of positive reports seems too high -there has to be more it doesn't work for. And....please share the positive you are seeing even if it's " only " a few days -I know many of you don't feel comfortable as it's so new and all want to wait a few weeks prior - but this does appear to be working in some ways in just days - and please continue to post updates. For example I keep noticing new things in my son Tanner to this day- and will continue to share that as well. You can write " it's only been 2 days and I don't know if this is from the nutriiveda or not but for the first time my son... " If we keep hearing that (as we are here and as I am even more so in private off list or on the phone) we know as a group for sure this works in a day or so -but for all you waiting to share -you may forget those first little signs. We can get this validated I'm sure much easier than just about anything else due to who is behind it. Anni again thanks for sharing and please do continue to update all of us and.....CONGRATULATIONS!!!!! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2010 Report Share Posted February 10, 2010 , Have you considered the possibility of metals?--The risk of redistribution is HUGE when doing HBOT--even if it doesn't always happen when you start out--but the risk is there--if metals are there--which in most of these kids with impaired detoxification and methyaltion pathways they always are. DANs do not always do safe protocols. please join lists doing both SAFE chealtion (AC protocol--low dose--administered ONLY according to half life of chelating agent for minimum of 3-5 days) and HBOT and learn as much as you can. Some kids improve with HBOT but others regress after a period of improvement and metlas are to blame. All the best, Elena From: anna_liisajansson <anna_liisajansson@...> Subject: [ ] OMG!!!!! Date: Wednesday, February 10, 2010, 5:32 PM I have great news to share, it is finally our turn to report a surge! It was just last week that I posted what a bad week it had been. Jack seemed a little out of it and was making no vocalization attempts. Wow, what a difference a week makes! It has been 5 days on the right oil (EPA and EFA) and 5 days on Nutriveda. JAck's PROMPT specialist came to my home for a session today. As usual they went to the basement to play. Trish came upstairs and said " Anni, you have to see this! " So I went downstairs and Trish started playing an animal game with Jack. She was asking him to say elephant, tiger, giraffe etc and he was attemting to say them all! It didn't sound exactly like the word, but it was getting close!! Trish told me that this was a jump. The last time she saw him she was having to prompt for sounds where the lips come together. He was doing that all by himself today, no prompting! He used to never even attempt a difficult word, he'd just look away if you asked him! Also, there is more engaement, it's hard to explain because it is subtle. As I said, it has only been 5 days. I am sure we are in for more improvement. I will keep posting his progress. We are starting the SCD diet on Sunday. GFCF didn't work for us. My son has horrible digestive issues. We need to get his bowels under control before we do HBOT. I am going to keep him on the oils and NV. For those who are also interested in SCD and HBOT, you may want to follow our progress. Just a note, SCD diet is not for everyone. It is a very strict diet and I am working closely with our DAN Doc on this one. I also want to thank , I truely cannot express how thankful I am for all your contributions. I would still be lost and full of anxiety. You are helping us all through this confusing puzzle. I really felt hopeless before. Now I feel as if we are making major headway. Thank you, thank you, thank you! PS , sorry my phone did die while we were talking! ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 - I am one of those that unfortunately doesn't have much good news to share. C. 4 years old - Diagnosis of CP (we have no real diagnosis that has been found in a test) - but Global Apraxia. is 4 - non verbal I think with us she may be making small progress on 2 scoops a day (one in morning, one with dinner) but nothing to really " WOW " us. unfortunately during the whole process of the nutriiveda she is now on her 3 bout of antibiotics and on the 22nd we will be putting tubes back in her ears (her left fell out and she has had 3 ear infections over the last 3 months since it came out) So I am not sure if that has caused ill effect on teh NutriiVeda. She definitely is not having behavior issues as she was a week after we started the nutriiveda - that has all calmed down. But again it's hard for me to really see any progress with her. I have taken her out of private therapy to give her a break. She has been having the horrible behavior problems during private therapy sessions so we are going to see what happens when we give her a break and allow our nanny to focus on therapy with her at home while in play. She gets therapy at school, so it's not like she is getting nothing. When summer gets closer I will start back to the priviate therapy - but we are thinking that she may just need a break and have the chance to be a kid and have fun. She has been in therapy for 2+ years non stop and I think she is telling us she is sick of it. And when you have an hour session of which 30-45mins is spent dealing with behavior issues, it's a worthless hour and a waste of money. So we will see what happens. If she starts regressing of course I will rethink this decision! But for now - we will just keep waiting for that surge from teh nutriiveda and pray that she gets healthy soon so we can really see it work! > > Anni thank you SO MUCH for sharing here! I also wanted to add the other things that you shared with me as I believe all of us need to start keeping a journal as the surges appear to be in specific areas that we are all seeing (I'll list them below) The points you made to me that really stuck with me > > 1. Your Prompt therapist who is normally " quiet and controlled " not only called you in a way that she never did before -but that she had " tears in her eyes " when she told you!!!! > > 2. When I was talking to you about the increase in sense of humor being reported you told me about how your son was crawling on your back laughing or something but had never done that before due to his motor planning (please share here as I probably wrote it wrong what he did!) > > 3. Your husband who was a skeptic (which seems to be par for the course for most of us to start huh??) said he sees the change in him! > > I believe what we need to do - what I'm going to try to start doing -is compiling the results we are all seeing because I was told that there may be a interest to validate what we are seeing with research...I mean we have Dr. Chopra and Dr. Simon and all who I'm sure are just as shocked as anyone else about what is going on. There has to be a logical explanation as to why this is working...and so quickly. I mean a day to a few days? That's crazy right? Crazy in a good way I mean. Anyway please everyone start sharing child's age -diagnosis with your reports. I can put everyone together with first name and first initial of last name and let me know if it's OK if any of the doctors wanted to contact you. > > Areas to look for surges in (in most cases multiple areas at once) Please keep a journal to report surges in these or any other areas I may have forgotten or missed. > > SPEECH articulation, complexity and sophistication of sentence structure > LANGUAGE better understanding of written and spoken word, development of better reading and writing skills > ACADEMICS/LEARNING reported surges in all areas of school > FINE AND GROSS MOTOR SKILLS also multi tasking > SENSE OF HUMOR both catching subtle humor and wanting to make others laugh -joking around > AWARENESS OF SURROUNDINGS (for autism) reported following gaze and more interactions > FACIAL EXPRESSIONS (for those with oral apraxia) instead of blank stares when not engaged in conversation (non verbal expressions) > FOCUS on task, more willing to listen and try > MULTI TASKING (for apraxia as this is something typically not done or done well) > SOCIAL wanting to participate with others via play and communication > MOOD reported seems " happier " for a number > DEVELOPMENTAL CATCHING UP for those that never went through stages -reportedly going through them for the first time. > > Also please report for anyone who ISN'T seeing any surges. How many days -age of child, diagnosis and what dosage. Also please report any negative you are seeing (so far we know " hyper " and in one case the child had a rash on belly but parent discontinued after 2 days so we don't know what from) I'd say to at least give product one week to work -but most of us do notice surges in a few days. > > But please share " no change in any area " results too -the number of positive reports seems too high -there has to be more it doesn't work for. And....please share the positive you are seeing even if it's " only " a few days -I know many of you don't feel comfortable as it's so new and all want to wait a few weeks prior - but this does appear to be working in some ways in just days - and please continue to post updates. For example I keep noticing new things in my son Tanner to this day- and will continue to share that as well. You can write " it's only been 2 days and I don't know if this is from the nutriiveda or not but for the first time my son... " If we keep hearing that (as we are here and as I am even more so in private off list or on the phone) we know as a group for sure this works in a day or so -but for all you waiting to share -you may forget those first little signs. We can get this validated I'm sure much easier than just about anything else due to who is behind it. > > > Anni again thanks for sharing and please do continue to update all of us and.....CONGRATULATIONS!!!!! > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 Hi , I am sorry your child is not making progress. Have you tried the MB12 shots--your daughter sounds like my daughter--speech behavior wise--prior to the MB12 shots. These kids have blocked detoxification and methylation pathways----the mB12 shots have been the best thing we've done for her so far---started focusing more paying attention and babbling--sequencing sounds more and more almost immediately after the <b12. The brain cannot function properly without this--and there are reasons to suspect many kids with developmental delays--neurological disorders etc--lack thsi vital nutrient--along with many others--but anyway--thsi one is not absorbed from the gut unless the intrinsic factor is present and even with that there may be other defective mechanisms in thsi process so having a constant supply in the body from these every 3 days shots---helps many of them. She is now speaking full sentences, complying, mainstreamed in kindergarten--a completely different child and at 3.5 could not say mama and 3 local " apraxia experts' had booted her out for noncompliance--they basically gave up on her--yes---most of the session was spent on behavioral issues. These kids really do have starving brains--the problems are metabolic--this is increasingly supported by research and hitting upon the right supplement or combo of diet/and supplements for each child is key. ll the best, Elena From: julie <gtzellner@...> Subject: [ ] Re: OMG!!!!! Date: Thursday, February 11, 2010, 2:34 PM - I am one of those that unfortunately doesn't have much good news to share. C. 4 years old - Diagnosis of CP (we have no real diagnosis that has been found in a test) - but Global Apraxia. is 4 - non verbal I think with us she may be making small progress on 2 scoops a day (one in morning, one with dinner) but nothing to really " WOW " us. unfortunately during the whole process of the nutriiveda she is now on her 3 bout of antibiotics and on the 22nd we will be putting tubes back in her ears (her left fell out and she has had 3 ear infections over the last 3 months since it came out) So I am not sure if that has caused ill effect on teh NutriiVeda. She definitely is not having behavior issues as she was a week after we started the nutriiveda - that has all calmed down. But again it's hard for me to really see any progress with her. I have taken her out of private therapy to give her a break. She has been having the horrible behavior problems during private therapy sessions so we are going to see what happens when we give her a break and allow our nanny to focus on therapy with her at home while in play. She gets therapy at school, so it's not like she is getting nothing. When summer gets closer I will start back to the priviate therapy - but we are thinking that she may just need a break and have the chance to be a kid and have fun. She has been in therapy for 2+ years non stop and I think she is telling us she is sick of it. And when you have an hour session of which 30-45mins is spent dealing with behavior issues, it's a worthless hour and a waste of money. So we will see what happens. If she starts regressing of course I will rethink this decision! But for now - we will just keep waiting for that surge from teh nutriiveda and pray that she gets healthy soon so we can really see it work! > > Anni thank you SO MUCH for sharing here! I also wanted to add the other things that you shared with me as I believe all of us need to start keeping a journal as the surges appear to be in specific areas that we are all seeing (I'll list them below) The points you made to me that really stuck with me > > 1. Your Prompt therapist who is normally " quiet and controlled " not only called you in a way that she never did before -but that she had " tears in her eyes " when she told you!!!! > > 2. When I was talking to you about the increase in sense of humor being reported you told me about how your son was crawling on your back laughing or something but had never done that before due to his motor planning (please share here as I probably wrote it wrong what he did!) > > 3. Your husband who was a skeptic (which seems to be par for the course for most of us to start huh??) said he sees the change in him! > > I believe what we need to do - what I'm going to try to start doing -is compiling the results we are all seeing because I was told that there may be a interest to validate what we are seeing with research...I mean we have Dr. Chopra and Dr. Simon and all who I'm sure are just as shocked as anyone else about what is going on. There has to be a logical explanation as to why this is working...and so quickly. I mean a day to a few days? That's crazy right? Crazy in a good way I mean. Anyway please everyone start sharing child's age -diagnosis with your reports. I can put everyone together with first name and first initial of last name and let me know if it's OK if any of the doctors wanted to contact you. > > Areas to look for surges in (in most cases multiple areas at once) Please keep a journal to report surges in these or any other areas I may have forgotten or missed. > > SPEECH articulation, complexity and sophistication of sentence structure > LANGUAGE better understanding of written and spoken word, development of better reading and writing skills > ACADEMICS/LEARNING reported surges in all areas of school > FINE AND GROSS MOTOR SKILLS also multi tasking > SENSE OF HUMOR both catching subtle humor and wanting to make others laugh -joking around > AWARENESS OF SURROUNDINGS (for autism) reported following gaze and more interactions > FACIAL EXPRESSIONS (for those with oral apraxia) instead of blank stares when not engaged in conversation (non verbal expressions) > FOCUS on task, more willing to listen and try > MULTI TASKING (for apraxia as this is something typically not done or done well) > SOCIAL wanting to participate with others via play and communication > MOOD reported seems " happier " for a number > DEVELOPMENTAL CATCHING UP for those that never went through stages -reportedly going through them for the first time. > > Also please report for anyone who ISN'T seeing any surges. How many days -age of child, diagnosis and what dosage. Also please report any negative you are seeing (so far we know " hyper " and in one case the child had a rash on belly but parent discontinued after 2 days so we don't know what from) I'd say to at least give product one week to work -but most of us do notice surges in a few days. > > But please share " no change in any area " results too -the number of positive reports seems too high -there has to be more it doesn't work for. And....please share the positive you are seeing even if it's " only " a few days -I know many of you don't feel comfortable as it's so new and all want to wait a few weeks prior - but this does appear to be working in some ways in just days - and please continue to post updates. For example I keep noticing new things in my son Tanner to this day- and will continue to share that as well. You can write " it's only been 2 days and I don't know if this is from the nutriiveda or not but for the first time my son... " If we keep hearing that (as we are here and as I am even more so in private off list or on the phone) we know as a group for sure this works in a day or so -but for all you waiting to share -you may forget those first little signs. We can get this validated I'm sure much easier than just about anything else due to who is behind it. > > > Anni again thanks for sharing and please do continue to update all of us and.....CONGRATULATIONS!!!!! > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 HI, My son has low moderate levels for metals. My DAN Doc advised me that first we get his bowels under control, then we do HBOT, this will help promote the healing and then we bio chelate. This make sense to me. HBOT is so theraputic. It will help him get to where he needs to be to chelate. I really do not want to screw this up?! Do you have any documented info on this? I am going to google it. I really do not want to do the wrong thing! Anni > > From: anna_liisajansson <anna_liisajansson@...> > Subject: [ ] OMG!!!!! > > Date: Wednesday, February 10, 2010, 5:32 PM > > I have great news to share, it is finally our turn to report a surge! It was just last week that I posted what a bad week it had been. Jack seemed a little out of it and was making no vocalization attempts. Wow, what a difference a week makes! It has been 5 days on the right oil (EPA and EFA) and 5 days on Nutriveda. JAck's PROMPT specialist came to my home for a session today. As usual they went to the basement to play. Trish came upstairs and said " Anni, you have to see this! " So I went downstairs and Trish started playing an animal game with Jack. She was asking him to say elephant, tiger, giraffe etc and he was attemting to say them all! It didn't sound exactly like the word, but it was getting close!! Trish told me that this was a jump. The last time she saw him she was having to prompt for sounds where the lips come together. He was doing that all by himself today, no prompting! He used to never even attempt a difficult > word, he'd just look away if you asked him! Also, there is more engaement, it's hard to explain because it is subtle. As I said, it has only been 5 days. I am sure we are in for more improvement. > I will keep posting his progress. We are starting the SCD diet on Sunday. GFCF didn't work for us. My son has horrible digestive issues. We need to get his bowels under control before we do HBOT. I am going to keep him on the oils and NV. For those who are also interested in SCD and HBOT, you may want to follow our progress. Just a note, SCD diet is not for everyone. It is a very strict diet and I am working closely with our DAN Doc on this one. > I also want to thank , I truely cannot express how thankful I am for all your contributions. I would still be lost and full of anxiety. You are helping us all through this confusing puzzle. I really felt hopeless before. Now I feel as if we are making major headway. Thank you, thank you, thank you! > PS , sorry my phone did die while we were talking! > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 I wish you were here so I could give you a hug!!! I'm so thrilled with the progress that has made based on where she is coming from which most of the group doesn't know. Not sure if you read the message I sent out about frustration (when 's dad knew he was going to be OK) and the article about oral exploration and ..and the increases in babble. I know that you are in contact with Robin Ketchum and that she can greatly guide you as a big sister as well as your daughter and hers are similar in the severity of the global delays. I know you stopped private SLP to give a break but at her age I highly recommend switching therapists to one that makes it more fun rather than stopping therapy especially given her severity level. Robin can tell you how much of a pain I was in bugging her about finding a new therapist for Mel (as you read in the past blog!) Robin just found an awesome new SLP in the Atlanta area who perhaps she can share with you once Mel starts in the next few days -and since she'll be video taping the sessions you and all of us can watch and see how fun she makes it while she's doing some really good work with helping to bring Mel a voice. I have posted a few times now that I do believe that antibiotics affects the effectiveness of the nutriiveda -not because of our kids and surges but because of some adults who didn't lose the same amount of weight until after they were off the antibiotics for weeks -keep in mind they do change things in the gut/body. But the good news is that these type of things either " work " or you wouldn't see anything. I absolutely would not give mB12 shots at this point while you are just starting the nutriiveda because as you know it's already nutrient dense and has the B vitamins in it http://www.up0.net/content/666799/Choco_NutritionFacts.pdf Besides this group has members that have done that for years now -and as we all know there has never been anything that has been as amazing as the fish oils...(with didn't respond to right?) up to the nutriiveda that is which appears to have surpassed the fish oils in the shorter time to see surges in a few days, higher percentage of children that are responding, and the huge amount of areas we are seeing progress in. is still so young and what Mel is teaching all of us (and recent research) is that even at 25 years old it's NEVER too late for hope- and change -and progress!!! http://littlemermaidmelanie.wordpress.com/about ===== Quote Link to comment Share on other sites More sharing options...
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