Guest guest Posted April 6, 2010 Report Share Posted April 6, 2010 I would for sure talk to his doctor . Could be growth/med ratio since your son has Sotos syndrome which is a rare genetic disorder and the main symptom is excessive physical growth -but that is only during the first few years of life and he's 12 right? I'm not sure how NV affects Sotos. Nutriiveda is just food but while with Mel and others, nutriiveda is reducing and even eliminating seizures, (with Mel to the point that her doctor believes she'll be off all meds by later this year...Robin will be sending a new update either later today or tomorrow) we don't know why your son would be different. We have to understand how nutriiveda is helping others -what physiological changes it's creating if any. From what I just read quickly does Sotos have something to do with protein? Just curious did you ever notice does protein rich foods trigger seizures in your son? Here are three pages I found http://ghr.nlm.nih.gov/condition=sotossyndrome http://www.sotossyndrome.org/what.php http://www.ninds.nih.gov/disorders/sotos/sotos.htm Also I recall you mentioning to me that your son had no words prior to Nutriiveda- have you noticed any surges in speech or anything since he's been eating nutriiveda? What dosage do you use? Also jut to throw this out there especially since what just happened to Mel. It was assumed by all -including Mel's family and doctors that Mel started having seizures again which is why they raised her meds -but upon extensive neurotesting at the hospital she never had a seizure -she was acting strange and had regression because in her case she had pneumonia which went undiagnosed for a bit. Apparently pneumonia is painful -I didn't know that -and Mel did not have the signs of being sick earlier in the week when she was at the hospital -it wasn't until later in the week. The part that Robin wants to make sure everyone checks out that has seizure prone children on nutriiveda is that the Depakote which once so helped her from having seizures was suddenly at a toxic level in her body as her body no longer needed it -as her doctor said once it was all discovered her brain scans were beautiful/normal in comparison to before and there was as he said " no other explanation " that " nutriiveda is somehow healing Mel's brain " . In Robin's next update she is going to share about seizure meds and the myopathies created in Mel's body due to the toxic level of Depakote- it's quite serious. Not saying not to use seizure meds of course -but once on nutriiveda please make sure they are monitored and don't underestimate what nutriiveda is doing for some. And again Mel's doctor now believes Mel will be off all seizure meds by the end of this year -and that nutriiveda was healing her brain. Also see the offer from Dr. Tom below. I know you are in Costa Rica but perhaps you can speak with Robin? Not saying your child has pneumonia -but as in Mel's case just make sure you get testing done to make sure it's seizures and not something else...for example a good thing too. Right now nothing is certain based on what happened with Mel but neuro tests won't lie so good you are going for that testing -but be sure to share Mel's story. http://littlemermaidmelanie.wordpress.com/about Please let us know and update us what the doctor says -and please share the following information with him as Dr. Tom would work with your child's doctor on this neurotransmitter testing if interested. Again not sure of the differences when it comes to Sotos vs other impairments. From Dr. Tom: Thanks for the inspiring testimonial. The results, although dramatic, are not surprising. The amino acid profile of NutriiVeda would undoubtedly assist and support the healing of any neurotransmitter deficiency, whether seizures, depression, anxiety disorder, insomnia. Parkinson's disease, due to its unique nature, would be less likely to show significant; however, we did have an unexpected and dramatic improvement in an individual with Parkinson's using Zrii. To answer the question/concern regarding serotonin level monitoring during the consumption of NutriiVeda: it is not necessary. However, if an individual does have any of the neurotransmitter deficiency disorders listed above and DOES wish to monitor their neurotransmitter levels, I would be most supportive of this documentation. The most extensive neurotransmitter testing available is done at home, rather than at a lab, on a morning urine, and is covered by most insurances including Medicare and HMO's. Many physicians, including Neurologists and Psychiatrists, are unaware of this home-based test, its insurance coverage, or how to interpret the results. Any IE or consumer wishing to obtain such neurotransmitter testing may contact Geng who will contact me directly. Email at lisa@... as she will pass on to me and I will have the lab test kit drop shipped to them. I will serve as the ordering physician and ensure their primary care physician receive a carbon copy of results. Regards, Dr. Tom ( Yarema M.D. is director of Clinical Medicine for Kerala Ayurveda, with medical clinics and Ayurvedic academies in Aptos, California and Seattle. Dr. Yarema is a pioneer in the field of Integrative Medicine and remains committed to bridging the best of all systems of medicine. His professional tools consist of Allopathy, including 12 years of full-time practice in Emergency Medicine, Ayurveda, and Traditional Oriental Medicine. His is also author of the book Eat, Taste, Heal An Ayuvedic Guidebook and Cookbook for Modern Living) From Dr. Suhas: Aloha, NutriiVeda is an ideal herbal food supplement. It takes care of some vital nutrients absolutely needed for the optimum functioning of neuro-physiology but also the herbs like Amalaki-Turmeric-Guggul- Gymnema work on opening the micro circulatory channels. They also regulate the various endocrine pathways. It is very likely that there is better oxygenation to the brain and harmonious functioning of the Rt and Lt hemispheres because of reduced inflammation. Serotonin- It does not increase or decrease anything but it regulates these subtle molecules by improved Lymphatic Return in the circulation. According to Ayurveda Serotonin and Melatonin are Sun/Moon, Male/Female, Silence/Dynamism, Yin/Yang like principles, which are effectively regulated by these intelligent herbs. Great testimonial, we do expect many more in many diverse areas. Suhas Dr. Suhas G.Kshirsagar BAMS, MD(Ayurveda,India) Head of US Operations, Kerala Ayurveda Academy & Clinics California Center for Integrative Medicine 9099 Soquel Drive, Cottage 7 & 9 Aptos, CA 95003 (Dr. Suhas Kshirsagar BAMS, MD Ayurveda is an accomplished ayurvedic doctor with over 10 generations of actual ayurvedic healing practice in his family heritage. Dr. Suhas Kshirsagar has conducted research for Ayuveda Rasashala and has been Medical Director of Maharshi University of Management. He has extensive clinical experience in treating patients in ayurvedic therapies and Panchakarma which promotes gentle body cleansing, body balancing and rejuvenation for an inner sense of well-being. Suhas has received Gold Medal recognition from Pune University. ) I'll be adding some of the above to our pages at http://www.pursuitofresearch.org probably connected to our parent research page- Yay professional input on this finally not just behind the scenes telling me how amazing this is that it's working for their patients or own child -but coming forward to share publicly and help!!!! http://pursuitofresearch.org/science.html ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2010 Report Share Posted April 7, 2010 Take a look at www.ncbi.nlm.nih.gov/pubmed/17826001, P Mainardi - supplying about 1.25 g of extra tryptophan for two months, the people in his trial experienced appreciably reduced seizures. Those people responded poorly to standard anti-seizure medication. He gave them the tryptophan-containing product Serplus instead. Tryptophan is the brain's necessary building-block for serotonin; serotonin helps the brain adjust the balance of glutamate and GABA, the neurotransmitters of excitation and inhibition. Seizures can occur when one kind of firing predominates so much that the respective firing nerves enter waves of reciprocal firing -- excitation begets more excitation, as it were. The American equivalent of Serplus might be BioZzz. I've hoped that Nutriiveda also provided plenty of tryptophan and might help reduce seizures resulting from inadequate serotonin, but Nutriiveda is a complex package, one which hopefully helps all damaged chemical pathways at once. I doubt anyone can say whether it hurts the operation of your son's medications, or operates independently and something else is causing the seizures, or whether it's starting to repair pathways whose very repair is creating a new, maybe temporary environment where something is now clashing that never clashed before. A doctor might say, beware of Nutriiveda simply because it's an unknown. Perhaps, though, there would be a way to try Nutriiveda and medications in alternation, a month each? My completely lay guess is that having both Nutriiveda and medications at the same time creates a more unknown situation than using either alone. Good luck - Tim Stearns On Tue, Apr 6, 2010 at 4:38 PM, hubby4kids <hubby4kids@...> wrote: > > > Our son had another seizure today. That makes 2 that he has had while being > on NV (now 27 days). He is on seizure medication and normally has them under > control (in other words he doesn't have seizures). Next week he has his > appointment with the neuro-pediatrician at which time I'll see what he > thinks might be the correlation (if any) of seizures and NV. It may be that > our son needs his anti-seizure dosis upped as he is a bigger boy now. I'll > let you all know. > (ny, 12, non-verbal) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2010 Report Share Posted April 7, 2010 Thanks for your reply, . Incidentally, our son did not have seizures for 4 years (taking anti-seizure medication the whole time) and so I took him to a homeopath (acupuncture) and we slowly eased him off his medication. That was about a year ago. Then he had a grand mal seizure in October 2009! The worst ever! His doctor was so upset that I had gone the route of alternative medicine without consulting him (I don't blame him, but then, he knows me I've done this before). So we put ny back on all his meds. All this to say - I can imagine when I talk with the doctor next week he will be very skeptical about any claim that nutriiveda (or anything else) is " reducing and even eliminating seizures " (to quote you). I'm mentally preparing for his reaction! To answer your question if protein rich foods trigger seizures in our son - back when he started to have seizures at age 5 we were doing a homeopathy treatment and, in conjunction with a team of " experts " , we did not put ny on anti-seizure medication for over a year, in spite of his having many seizures. During that time we tried many things such as diet, chelation, fish oils, biochemistry, all the while keeping track of his circumstances and such in order to determine what might be triggering the seizures. Conclusion was we came to no conclusion! Nothing to explain it. Finally after a series of several seizures, one after the other, and a hospital stay, we decided to go the regular route with medication. It took a while to get the right meds and the right dosis but after a couple of years we had his seizures under control and he no longer had them. Then a year ago ... and the story continues as told above ... Thank you for your help in this. I am keeping close observation of our son - what changes might be happening that could be brought on by NV. One thing is in his swimming lesson the trainer was delighted on Monday that he swam 30 laps, instead of the usual 22 or so! More energy? Perhaps.(His swimming is dog-paddle, by the way, don't picture him as a Phelps!). Our son continues to have NO words. The dosage I give him is: 2 scoops in a glass of milk in the morning and 2 scoops in a glass of milk in the afternoon. I think that's the full dosage. (ny 12 non-verbal) > > I would for sure talk to his doctor . Could be growth/med ratio since your son has Sotos syndrome which is a rare genetic disorder and the main symptom is excessive physical growth -but that is only during the first few years of life and he's 12 right? I'm not sure how NV affects Sotos. Nutriiveda is just food but while with Mel and others, nutriiveda is reducing and even eliminating seizures, (with Mel to the point that her doctor believes she'll be off all meds by later this year...Robin will be sending a new update either later today or tomorrow) we don't know why your son would be different. We have to understand how nutriiveda is helping others -what physiological changes it's creating if any. From what I just read quickly does Sotos have something to do with protein? Just curious did you ever notice does protein rich foods trigger seizures in your son? > > Here are three pages I found > http://ghr.nlm.nih.gov/condition=sotossyndrome > http://www.sotossyndrome.org/what.php > http://www.ninds.nih.gov/disorders/sotos/sotos.htm > > Also I recall you mentioning to me that your son had no words prior to Nutriiveda- have you noticed any surges in speech or anything since he's been eating nutriiveda? What dosage do you use? > > Also jut to throw this out there especially since what just happened to Mel. It was assumed by all -including Mel's family and doctors that Mel started having seizures again which is why they raised her meds -but upon extensive neurotesting at the hospital she never had a seizure -she was acting strange and had regression because in her case she had pneumonia which went undiagnosed for a bit. Apparently pneumonia is painful -I didn't know that -and Mel did not have the signs of being sick earlier in the week when she was at the hospital -it wasn't until later in the week. The part that Robin wants to make sure everyone checks out that has seizure prone children on nutriiveda is that the Depakote which once so helped her from having seizures was suddenly at a toxic level in her body as her body no longer needed it -as her doctor said once it was all discovered her brain scans were beautiful/normal in comparison to before and there was as he said " no other explanation " that " nutriiveda is somehow healing Mel's brain " . > > In Robin's next update she is going to share about seizure meds and the myopathies created in Mel's body due to the toxic level of Depakote- it's quite serious. Not saying not to use seizure meds of course -but once on nutriiveda please make sure they are monitored and don't underestimate what nutriiveda is doing for some. And again Mel's doctor now believes Mel will be off all seizure meds by the end of this year -and that nutriiveda was healing her brain. Also see the offer from Dr. Tom below. > > I know you are in Costa Rica but perhaps you can speak with Robin? Not saying your child has pneumonia -but as in Mel's case just make sure you get testing done to make sure it's seizures and not something else...for example a good thing too. Right now nothing is certain based on what happened with Mel but neuro tests won't lie so good you are going for that testing -but be sure to share Mel's story. http://littlemermaidmelanie.wordpress.com/about > > Please let us know and update us what the doctor says -and please share the following information with him as Dr. Tom would work with your child's doctor on this neurotransmitter testing if interested. Again not sure of the differences when it comes to Sotos vs other impairments. > > From Dr. Tom: > > > Thanks for the inspiring testimonial. The results, although dramatic, are not > surprising. The amino acid profile of NutriiVeda would undoubtedly assist and > support the healing of any neurotransmitter deficiency, whether seizures, > depression, anxiety disorder, insomnia. Parkinson's disease, due to its unique > nature, would be less likely to show significant; however, we did have an > unexpected and dramatic improvement in an individual with Parkinson's using > Zrii. > To answer the question/concern regarding serotonin level monitoring during the > consumption of NutriiVeda: it is not necessary. However, if an individual does > have any of the neurotransmitter deficiency disorders listed above and DOES wish > to monitor their neurotransmitter levels, I would be most supportive of this > documentation. The most extensive neurotransmitter testing available is done at > home, rather than at a lab, on a morning urine, and is covered by most > insurances including Medicare and HMO's. > > Many physicians, including Neurologists and Psychiatrists, are unaware of this > home-based test, its insurance coverage, or how to interpret the results. Any > IE or consumer wishing to obtain such neurotransmitter testing may contact > Geng who will contact me directly. Email at lisa@... as she will > pass on to me and I will have the lab test kit drop shipped to them. I will > serve as the ordering physician and ensure their primary care physician receive > a carbon copy of results. > > Regards, > Dr. Tom > > ( Yarema M.D. is director of Clinical Medicine for Kerala Ayurveda, with > medical clinics and Ayurvedic academies in Aptos, California and Seattle. Dr. > Yarema is a pioneer in the field of Integrative Medicine and remains committed > to bridging the best of all systems of medicine. His professional tools consist > of Allopathy, including 12 years of full-time practice in Emergency Medicine, > Ayurveda, and Traditional Oriental Medicine. His is also author of the book > Eat, Taste, Heal An Ayuvedic Guidebook and Cookbook for Modern Living) > > From Dr. Suhas: > > Aloha, > NutriiVeda is an ideal herbal food supplement. It takes care of some vital > nutrients absolutely needed for the optimum functioning of neuro-physiology but > also the herbs like Amalaki-Turmeric-Guggul- Gymnema work on opening the micro > circulatory channels. > > They also regulate the various endocrine pathways. It is very likely that there > is better oxygenation to the brain and harmonious functioning of the Rt and Lt > hemispheres because of reduced inflammation. > > Serotonin- It does not increase or decrease anything but it regulates these > subtle molecules by improved Lymphatic Return in the circulation. According to > Ayurveda Serotonin and Melatonin are Sun/Moon, Male/Female, Silence/Dynamism, > Yin/Yang like principles, which are effectively regulated by these intelligent > herbs. > Great testimonial, we do expect many more in many diverse areas. > > Suhas > > Dr. Suhas G.Kshirsagar BAMS, MD(Ayurveda,India) > Head of US Operations, Kerala Ayurveda Academy & Clinics > California Center for Integrative Medicine > 9099 Soquel Drive, Cottage 7 & 9 > Aptos, CA 95003 > > (Dr. Suhas Kshirsagar BAMS, MD Ayurveda is an accomplished ayurvedic doctor > with over 10 generations of actual ayurvedic healing practice in his family > heritage. Dr. Suhas Kshirsagar has conducted research for Ayuveda Rasashala > and has been Medical Director of Maharshi University of Management. He has > extensive clinical experience in treating patients in ayurvedic therapies and > Panchakarma which promotes gentle body cleansing, body balancing and > rejuvenation for an inner sense of well-being. Suhas has received Gold Medal > recognition from Pune University. ) > > I'll be adding some of the above to our pages at > http://www.pursuitofresearch.org probably connected to our parent research page- > Yay professional input on this finally not just behind the scenes telling me how > amazing this is that it's working for their patients or own child -but coming > forward to share publicly and help!!!! > http://pursuitofresearch.org/science.html > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2010 Report Share Posted April 7, 2010 Hi -  Just another thought on this. My son Josh was diagnosed with epilepsy last October and went on Keppra, but he also started having what some folks call " pseudoseizures " (psychogenic non-epileptic seizures). The Keppra has the epileptic seizures under control for the most part (in the 5 1/2 months on the meds, he's had only about 2 absence seizures of less than 10 seconds each). I have not put Josh on the NV (until I get more info on some allergy possibilities), but could your son's seizures be non-epileptic? The only reason I'm asking is that it appears a lot of the kiddoes on NV are experiencing, from my reading, surges in speech but also what could be described as sensory awareness - perhaps your son may be overwhelmed by the new internal experiences from the NV and that is manifesting in non-epileptic seizures? I'm just throwing that out there to maybe talk to the neurodoc about the possibility. Has your son had a videoEEG? That would be about the only way to really tell. Good luck!  Sherry and Josh From: hubby4kids <hubby4kids@...> Subject: [ ] another seizure Date: Tuesday, April 6, 2010, 6:38 PM  Our son had another seizure today. That makes 2 that he has had while being on NV (now 27 days). He is on seizure medication and normally has them under control (in other words he doesn't have seizures). Next week he has his appointment with the neuro-pediatrician at which time I'll see what he thinks might be the correlation (if any) of seizures and NV. It may be that our son needs his anti-seizure dosis upped as he is a bigger boy now. I'll let you all know. (ny, 12, non-verbal) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2010 Report Share Posted April 7, 2010 As much as I am into alternative vs. medication if possible I am not into doing anything without a doctor's consent -especially for my children- or recommendation for other children, since the child is dependent upon the adults in her and his life to make decisions. I am however very fond of second or even third opinions by doctors I understand why you quote me but would appreciate if you could put the entire quote as it makes a world of difference. It is being reported here and to me that nutriiveda is reducing and eliminating seizures by parents who have children prone to seizures. You can also quote me that I was told by Robin that her daughter Mel's doctor believes that nutriiveda is " healing 's brain " as there is " no other explanation for the changes other than Nutriiveda " in her brain scans etc. and that he believes she will " be off of all seizure meds by the end of this year " and does not want ever taken off Nutriiveda. That is coming from a medical doctor -Mel's doctor. People can be shocked and things may be difficult to believe - but you can't argue with what's in front of your eyes in extensive neurotesting and history. There are no claims on nutriiveda officially other than that it naturally due to the foods in it helps to support the metabolic system and will nourish and detox the body naturally as it's a whole food. Water it all down (well I guess in reality you could too haha) and it's (again) a very healthy version of Carnation Instant Breakfast -one you could purchase at say a Whole Foods if they had a version that was 100 percent natural, gluten, casein, fat, sodium, and caffeine free. Nutrient dense and containing all the essential amino acids (which is huge) per serving -and the nutrients are not man made added -they are the pure form from food sources. So I say once again -it's like asking " Can I feed my child a banana " Silly in a way -but I recommend in every single message here and anywhere to have this approved by the child's doctor for many reasons. One is that most don't understand nutrition and some doctors do, two is that there is a fear of what is not understood and a doctor approving it will eliminate that fear, and three I believe in regards to children that the child's doctor should always be in the loop -but that's me. This is why I asked if food made a difference -because Nutriiveda is just that -a food. It appears to be making a difference in the same way that fish oils do -it's feeding a void that is there nutritionally. If we go to the reasons or theories why Nutriiveda is helping it's all in nutrition. What that would mean is that unlike medicine that takes over- nutrients would provide what the body needs to help itself. If you want to quote me on anything " it is my opinion that Nutriiveda is providing a nutrient or nutrients that have been missing in the diet " I highly doubt too much time will have to go by before this is research on this because in this case, unlike fish oils, even though this too is all natural -is formulated by a distinguished team of very well known medical doctors including Dr. Deepak Chopra. In the meantime there are key things in my opinion that need to be looked at. One is again to make sure what you are seeing is a seizure and that will be done when you go to the doctor next week. Again (and you probably missed this because you didn't even mention it as it's that much of a terrible update!!!) now is dealing with muscle weakness where she is no longer able to stand for any period of time or do anything on her own once again due to what was mentioned in the hospital as myopathies from the toxic level of Depakote in her system. (Yes I deliberately put that word on a separate line) In other words to say this again in another way...It was assumed by all -including Mel's parents and family who know this 26 year old woman best and love her more than anything in the world -that Mel was having seizures or had a seizure based on her actions- what she did- Robin can probably explain better than me as I wasn't there. But in other words the doctors too assumed she had a seizure as there was a sudden regression. (keep separating lines here so this point is not missed) There was a sudden regression because Mel had pneumonia and nobody knew until later in the week. She was in the hospital and eventually in intensive care and it was not right away that they discovered A. She never had a seizure and even with all the tests to try to trigger seizures including with pain she didn't show any changes B. Her brain scans showed a beautiful healthy brain -much different than the one prior to Nutriiveda which is unexplainable except for Nutriiveda as she is already an adult at this point C. She had toxic levels of seizure medication in her body because her body no longer needed high levels of Depakote which is where they put her...and in addition they did not diagnose her pneumonia until days later!!!! What I just wrote here is not my opinion- it's something that each and every parent who has a seizure prone child needs to be aware of- that is Robin's wish and I know that soon she will be back here to share in her own words. What she is dealing with now is nothing short of a nightmare as she had a daughter who was blossoming into a young woman almost as if she was coming out of a coma or something -and now this poor little thing was almost killed by the medication that was meant to help her -and put undiagnosed for days pneumonia on top of that!! Anyway -the point is that sometimes things don't seem as they appear. Sherry for example just provided one theory as to what could be going on. I myself do believe that ayurvedic medicine is making a difference too -but it's clear that's just too much to go into here and people don't understand that ayurveda in itself translates to the science of nature and that it's a 5000 year old medicine. It does seem better here to just relate Nutriiveda to a healthy form of Carnation Instant Breakfast -but for those of you here that are more aware of nutrition- please know that I do respect and appreciate this may have to do with a science we are just starting to learn more about in the Western culture. I again am just happy you are going to see your doctor next week. I do of course want you to share about Nutriiveda and what we've seen in this group including about Mel...in fact I'm sure if he was interested that Robin can put Mel's doctor in touch with yours. I also want you to bring up the letters and offer from Dr. Tom and DR. Suhas -you did not mention that either but I believe that the offer is pretty awesome (I'm going to leave that part below) Please keep us posted and know that we all care!! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2010 Report Share Posted April 7, 2010 , Just thinking out loud here, but what about bringing a copy of the letters lisa posted from Dr suhas and Dr Tom? Maybe if he see's those he'll be more willing to look at it in a different light.  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2010 Report Share Posted April 7, 2010 That is a thought, Sherry, - non-epileptic seizures. I will keep that in mind. And I'll bring this up to the doctor. A video EEG - no, he hasn't had one. He's had EEGs but a video one? I have not heard of that unless you are refering to videotaping his seizures. If I could react quick enough next time he has a seizure, I just might grab the video camera and tape it. Thanks! > > > From: hubby4kids <hubby4kids@...> > Subject: [ ] another seizure > > Date: Tuesday, April 6, 2010, 6:38 PM > > >  > > > > Our son had another seizure today. That makes 2 that he has had while being on NV (now 27 days). He is on seizure medication and normally has them under control (in other words he doesn't have seizures). Next week he has his appointment with the neuro-pediatrician at which time I'll see what he thinks might be the correlation (if any) of seizures and NV. It may be that our son needs his anti-seizure dosis upped as he is a bigger boy now. I'll let you all know. > (ny, 12, non-verbal) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2010 Report Share Posted April 7, 2010 Thanks for your thorough reply. I know what you mean about getting a doctor's consent. However, the things we've tried in the past would not have gotten his approval! But we felt we had to try them. We did have the doctor's approval that worked with whatever program we were trying. When I told the doctor I was going to start ny on NV and showed him the ingredients he had no problem as he saw it was just food. I do think I'll take copies of the letters sent by the two doctors in this group along with me to the appointment next week. (ny 12 non-verbal) > > As much as I am into alternative vs. medication if possible I am not into doing anything without a doctor's consent -especially for my children- or recommendation for other children, since the child is dependent upon the adults in her and his life to make decisions. I am however very fond of second or even third opinions by doctors > > I understand why you quote me but would appreciate if you could put the entire quote as it makes a world of difference. It is being reported here and to me that nutriiveda is reducing and eliminating seizures by parents who have children prone to seizures. You can also quote me that I was told by Robin that her daughter Mel's doctor believes that nutriiveda is " healing 's brain " as there is " no other explanation for the changes other than Nutriiveda " in her brain scans etc. and that he believes she will " be off of all seizure meds by the end of this year " and does not want ever taken off Nutriiveda. That is coming from a medical doctor -Mel's doctor. People can be shocked and things may be difficult to believe - but you can't argue with what's in front of your eyes in extensive neurotesting and history. > > There are no claims on nutriiveda officially other than that it naturally due to the foods in it helps to support the metabolic system and will nourish and detox the body naturally as it's a whole food. Water it all down (well I guess in reality you could too haha) and it's (again) a very healthy version of Carnation Instant Breakfast -one you could purchase at say a Whole Foods if they had a version that was 100 percent natural, gluten, casein, fat, sodium, and caffeine free. Nutrient dense and containing all the essential amino acids (which is huge) per serving -and the nutrients are not man made added -they are the pure form from food sources. So I say once again -it's like asking " Can I feed my child a banana " Silly in a way -but I recommend in every single message here and anywhere to have this approved by the child's doctor for many reasons. One is that most don't understand nutrition and some doctors do, two is that there is a fear of what is not understood and a doctor approving it will eliminate that fear, and three I believe in regards to children that the child's doctor should always be in the loop -but that's me. > > This is why I asked if food made a difference -because Nutriiveda is just that -a food. It appears to be making a difference in the same way that fish oils do -it's feeding a void that is there nutritionally. If we go to the reasons or theories why Nutriiveda is helping it's all in nutrition. What that would mean is that unlike medicine that takes over- nutrients would provide what the body needs to help itself. If you want to quote me on anything " it is my opinion that Nutriiveda is providing a nutrient or nutrients that have been missing in the diet " > > I highly doubt too much time will have to go by before this is research on this because in this case, unlike fish oils, even though this too is all natural -is formulated by a distinguished team of very well known medical doctors including Dr. Deepak Chopra. In the meantime there are key things in my opinion that need to be looked at. > > One is again to make sure what you are seeing is a seizure and that will be done when you go to the doctor next week. Again (and you probably missed this because you didn't even mention it as it's that much of a terrible update!!!) now is dealing with muscle weakness where she is no longer able to stand for any period of time or do anything on her own once again due to what was mentioned in the hospital as > > myopathies from the toxic level of Depakote in her system. > > (Yes I deliberately put that word on a separate line) > > In other words to say this again in another way...It was assumed by all -including Mel's parents and family who know this 26 year old woman best and love her more than anything in the world -that Mel was having seizures or had a seizure based on her actions- what she did- Robin can probably explain better than me as I wasn't there. But in other words the doctors too assumed she had a seizure as there was a sudden regression. > > (keep separating lines here so this point is not missed) > > There was a sudden regression because Mel had pneumonia and nobody knew until later in the week. She was in the hospital and eventually in intensive care and it was not right away that they discovered > > A. She never had a seizure and even with all the tests to try to trigger seizures including with pain she didn't show any changes > B. Her brain scans showed a beautiful healthy brain -much different than the one prior to Nutriiveda which is unexplainable except for Nutriiveda as she is already an adult at this point > C. She had toxic levels of seizure medication in her body because her body no longer needed high levels of Depakote which is where they put her...and in addition they did not diagnose her pneumonia until days later!!!! > > What I just wrote here is not my opinion- it's something that each and every parent who has a seizure prone child needs to be aware of- that is Robin's wish and I know that soon she will be back here to share in her own words. What she is dealing with now is nothing short of a nightmare as she had a daughter who was blossoming into a young woman almost as if she was coming out of a coma or something -and now this poor little thing was almost killed by the medication that was meant to help her -and put undiagnosed for days pneumonia on top of that!! > > Anyway -the point is that sometimes things don't seem as they appear. Sherry for example just provided one theory as to what could be going on. I myself do believe that ayurvedic medicine is making a difference too -but it's clear that's just too much to go into here and people don't understand that ayurveda in itself translates to the science of nature and that it's a 5000 year old medicine. It does seem better here to just relate Nutriiveda to a healthy form of Carnation Instant Breakfast -but for those of you here that are more aware of nutrition- please know that I do respect and appreciate this may have to do with a science we are just starting to learn more about in the Western culture. > > I again am just happy you are going to see your doctor next week. I do of course want you to share about Nutriiveda and what we've seen in this group including about Mel...in fact I'm sure if he was interested that Robin can put Mel's doctor in touch with yours. I also want you to bring up the letters and offer from Dr. Tom and DR. Suhas -you did not mention that either but I believe that the offer is pretty awesome > > (I'm going to leave that part below) > > Please keep us posted and know that we all care!! > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2010 Report Share Posted April 7, 2010 Good luck - hope it's all good news! Also here's some info on the video EEG Sherry mentioned http://www.epilepsy.com/epilepsy/testing_videoeeg Go give your son a hug!! ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2010 Report Share Posted April 7, 2010 Hi -  A videoEEG is a 24 to 48 hour EEG, usually done in hospital but can also be done outside the hospital (I'm told). They hook up the EEG and there's a video set up in the hospital room to tape the kid over the entire time. The parent presses a button any time an event that is thought to be a seizure occurs. All of it is recorded both on the EEG and video. With Josh, they recorded 3 seizures that we all thought were real epileptic seizures but the EEG did not show any abnormal brain activity - thus the diagnosis of psychogenic non-epileptic seizure. The EEG also showed minimal abnormal brain activity when he was at rest and nothing was outwardly manifesting a seizure - go figure! We're going back to the neuro at the end of this month for more follow-up.  Good luck to you and your son! Please keep us informed!  Sherry and Josh From: hubby4kids <hubby4kids@...> Subject: [ ] Re: another seizure Date: Wednesday, April 7, 2010, 3:54 PM  That is a thought, Sherry, - non-epileptic seizures. I will keep that in mind. And I'll bring this up to the doctor. A video EEG - no, he hasn't had one. He's had EEGs but a video one? I have not heard of that unless you are refering to videotaping his seizures. If I could react quick enough next time he has a seizure, I just might grab the video camera and tape it. Thanks! > > > From: hubby4kids <hubby4kids@ ...> > Subject: [childrensapraxiane t] another seizure > @groups. com > Date: Tuesday, April 6, 2010, 6:38 PM > > >  > > > > Our son had another seizure today. That makes 2 that he has had while being on NV (now 27 days). He is on seizure medication and normally has them under control (in other words he doesn't have seizures). Next week he has his appointment with the neuro-pediatrician at which time I'll see what he thinks might be the correlation (if any) of seizures and NV. It may be that our son needs his anti-seizure dosis upped as he is a bigger boy now. I'll let you all know. > (ny, 12, non-verbal) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2010 Report Share Posted April 8, 2010 My 12 year old daughter has also had the 23 hr EEG which is a video done while hooked up to the sensors at a hospital and is videotaped overnight. It came back she has pseudoseizures, why we are not sure, but we surmise they are due to anxiety.. We think she may also have small seizures when she is fighting an infection . I am nervous about trying her on the NV until I get input from our neuro who I am kind of dissapointed in as her still has not gotten back with me since EEG was done about 3 weeks ago but we do have an appoint early June. s Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2010 Report Share Posted April 8, 2010 my pediatrician approved nutreveda already but I too am nervous to try it still. Not because it's " good food " which my doctor confirmed but because what if my child is one of the few it doesn't work for? If my son had seizures and my doctor said it was OK I would have tried it already. I can't imagine having to deal with seizures in my son. If there is a possible natural way to reduce seizures from food why not? I know here I am telling you and I didn't try it yet either! LOL Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2010 Report Share Posted April 8, 2010 My son has diabetic seizures Sent from my iPad On Apr 7, 2010, at 3:54 PM, " hubby4kids " <hubby4kids@...> wrote: > That is a thought, Sherry, - non-epileptic seizures. I will keep that in mind. And I'll bring this up to the doctor. > A video EEG - no, he hasn't had one. He's had EEGs but a video one? I have not heard of that unless you are refering to videotaping his seizures. If I could react quick enough next time he has a seizure, I just might grab the video camera and tape it. > Thanks! > > > > > > > Hi - > >  > > Just another thought on this. My son Josh was diagnosed with epilepsy last October and went on Keppra, but he also started having what some folks call " pseudoseizures " (psychogenic non-epileptic seizures). The Keppra has the epileptic seizures under control for the most part (in the 5 1/2 months on the meds, he's had only about 2 absence seizures of less than 10 seconds each). I have not put Josh on the NV (until I get more info on some allergy possibilities), but could your son's seizures be non-epileptic? The only reason I'm asking is that it appears a lot of the kiddoes on NV are experiencing, from my reading, surges in speech but also what could be described as sensory awareness - perhaps your son may be overwhelmed by the new internal experiences from the NV and that is manifesting in non-epileptic seizures? I'm just throwing that out there to maybe talk to the neurodoc about the possibility. Has your son had a videoEEG? That would be > > about the only way to really tell. Good luck! > >  > > Sherry and Josh > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2010 Report Share Posted April 8, 2010 NV was something we had not tried yet so we decided to give it a 3 month shot. I don't worry about the fact that it may not bring results. That's happened before with other things we've tried and we're OK with it. At this stage I am less apt to try new things but NV did catch my attention. It sounds logical and the good results some kids have had are impressive. It would be great if there is a possible natural way to reduce seizures. We'll see. (ny 12) > > my pediatrician approved nutreveda already but I too am nervous to try it still. Not because it's " good food " which my doctor confirmed but because what if my child is one of the few it doesn't work for? If my son had seizures and my doctor said it was OK I would have tried it already. I can't imagine having to deal with seizures in my son. If there is a possible natural way to reduce seizures from food why not? I know here I am telling you and I didn't try it yet either! LOL Kate > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2010 Report Share Posted April 8, 2010    had a four day Video EEG (VEEG) in the hospital, while he was there they dropped his seizure medications for the intent to produce a seizure. They were able to pinpoint where exactly the seizures are/were occurring.   This entails having eeg leads on the child's head while being videoed the entire time.  Very boring but worth the information. good luck Alyssa ________________________________ From: Charlotte Henry <stehn4@...> " " < > Sent: Thu, April 8, 2010 11:19:17 AM Subject: Re: [ ] Re: another seizure  My son has diabetic seizures Sent from my iPad Quote Link to comment Share on other sites More sharing options...
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