Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 Graham doesn't fit into the " blanket " approach that our DAN has been trying to use for him. Is anyone here using Yasko's protocol? I know a lot of her supplements might be illegal, but I'm hoping that some are indeed legal. Thanks. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 I am just getting started with it. We have done a bunch of testing and are geeting ready to start the " gut " protocol. We also have an appt with a peds gastrointestinal doctor. The only thing the test results came back with is that there is fat in his stools (no yeast!!!!!) We are going to find out why he is not digesting fat. WE are pretty sure he does not have cistic fibrosis because I had the prenatal genetic test and was negative. Celiac came back negative but...he has been GF since february. I also have a patient (I'm a peds physical therapist) that is doing the full approch. They have just started as well about 2 months ago. He has been GFCF for 6 months with little improvement. He has the CBS genetic defect so he has high ammonia levels and wa aDvise not to do SCD. Thursday at his PT session, he started singing " twinkle, Twinkle little star. " It took me a minute to get what he was singing as it was choppy but it was there. He also was saying words randomly for me to imitate him (arm, cookie, water, finger plus several more`.)` Until this session I had hurt very little understandable speech (most self talk) and occastionlly an appropite word(tricycle mainly). One thing the speech therapist was interested in was that he sad " three " in command. He has never said a word on command for her in the year she has worded with him. I think the Dr.Amy apporch makes perfect sense. I took orgainic chemistry for my degree and her explainations make sence with the genteic mutation and if there are high levels of metals that are intefering with certain processes. Hope this helps! mother of Caden 2.5 years for chronic d and yeast (now gone!!!) and Emmalynn now GF due to d > > Graham doesn't fit into the " blanket " approach that our DAN has been > trying to use for him. Is anyone here using Yasko's protocol? I know > a lot of her supplements might be illegal, but I'm hoping that some > are indeed legal. Thanks. a > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 I am just getting started with it. We have done a bunch of testing and are geeting ready to start the " gut " protocol. We also have an appt with a peds gastrointestinal doctor. The only thing the test results came back with is that there is fat in his stools (no yeast!!!!!) We are going to find out why he is not digesting fat. WE are pretty sure he does not have cistic fibrosis because I had the prenatal genetic test and was negative. Celiac came back negative but...he has been GF since february. I also have a patient (I'm a peds physical therapist) that is doing the full approch. They have just started as well about 2 months ago. He has been GFCF for 6 months with little improvement. He has the CBS genetic defect so he has high ammonia levels and wa aDvise not to do SCD. Thursday at his PT session, he started singing " twinkle, Twinkle little star. " It took me a minute to get what he was singing as it was choppy but it was there. He also was saying words randomly for me to imitate him (arm, cookie, water, finger plus several more`.)` Until this session I had hurt very little understandable speech (most self talk) and occastionlly an appropite word(tricycle mainly). One thing the speech therapist was interested in was that he sad " three " in command. He has never said a word on command for her in the year she has worded with him. I think the Dr.Amy apporch makes perfect sense. I took orgainic chemistry for my degree and her explainations make sence with the genteic mutation and if there are high levels of metals that are intefering with certain processes. Hope this helps! mother of Caden 2.5 years for chronic d and yeast (now gone!!!) and Emmalynn now GF due to d > > Graham doesn't fit into the " blanket " approach that our DAN has been > trying to use for him. Is anyone here using Yasko's protocol? I know > a lot of her supplements might be illegal, but I'm hoping that some > are indeed legal. Thanks. a > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 I am just getting started with it. We have done a bunch of testing and are geeting ready to start the " gut " protocol. We also have an appt with a peds gastrointestinal doctor. The only thing the test results came back with is that there is fat in his stools (no yeast!!!!!) We are going to find out why he is not digesting fat. WE are pretty sure he does not have cistic fibrosis because I had the prenatal genetic test and was negative. Celiac came back negative but...he has been GF since february. I also have a patient (I'm a peds physical therapist) that is doing the full approch. They have just started as well about 2 months ago. He has been GFCF for 6 months with little improvement. He has the CBS genetic defect so he has high ammonia levels and wa aDvise not to do SCD. Thursday at his PT session, he started singing " twinkle, Twinkle little star. " It took me a minute to get what he was singing as it was choppy but it was there. He also was saying words randomly for me to imitate him (arm, cookie, water, finger plus several more`.)` Until this session I had hurt very little understandable speech (most self talk) and occastionlly an appropite word(tricycle mainly). One thing the speech therapist was interested in was that he sad " three " in command. He has never said a word on command for her in the year she has worded with him. I think the Dr.Amy apporch makes perfect sense. I took orgainic chemistry for my degree and her explainations make sence with the genteic mutation and if there are high levels of metals that are intefering with certain processes. Hope this helps! mother of Caden 2.5 years for chronic d and yeast (now gone!!!) and Emmalynn now GF due to d > > Graham doesn't fit into the " blanket " approach that our DAN has been > trying to use for him. Is anyone here using Yasko's protocol? I know > a lot of her supplements might be illegal, but I'm hoping that some > are indeed legal. Thanks. a > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 I do not understand the part about being advised not to do SCD because of high amonia levels. How are these related? If you could point me in the direction of some information, I would appreciate it. Jody mom to -7 and -9 SCD 1/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 > > Graham doesn't fit into the " blanket " approach that our DAN has been > trying to use for him. Is anyone here using Yasko's protocol? I know > a lot of her supplements might be illegal, but I'm hoping that some > are indeed legal. Thanks. a > Just trying to understand all thr protocols here. How long have you been using SCD? Can you try it without illegal supplements? As healing takes place they may not all be required. Some other programs can be compatible with SCD but the use of illegal supplements may interfere. Carol F. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 I totally agree with you. Sorry I should have added that to my post earlier :-( I don't understand why she (Dr. Yasko) refers to it as High protein diet. I don't think my son eat anymore protein now than he ever did but he does eat tons of fruits and veggies which is a miracle!!!!! She has some therories on what contributes to Autism some of which includes genetic mutations. This is only one of the factors. I may have the genetic markers that she is looking at but I did not have other things that often accompanies children who become autistic (ie ear infections, antibiotic use, high metals etc). This is from her forum from the " gut protocol " http://www.autismanswer.com/forum/viewtopic.php?t=1428 " Loose stools are an issue for a number of individuals, and I do understand that the SCD (Specific Carbohydrate Diet) has made a big difference in these cases. However, if you are supplementing protein it is important to monitor ammonia levels to be certain that the body is able to dispose of the ammonia properly that are generated from the intake of high protein foods. The body uses two molecules of BH4 to detoxify one molecule of ammonia to urea. This is an expensive way to use your BH4. BH4 is also needed for dopamine and serotonin as well as language related function. Since language is a primary problem for many children, using up limited BH4 to detoxify ammonia may not be the best use of it for the body. In addition, ammonia is reported to inhibit he metabolism of butyrate, along with other short chain fatty acids. Butyrate is a nutrient used by cells that line the gut. Butyrate synthesis can be inhibited by H2S and sulfites that are generated as a result of the CBS upregulation, low molybdenum or SUOX mutations. Paradoxically, butyrate has been reported to be a potent detoxifier of ammonia. " Excess stomach acid in the system can cause loose stools and severe stomach pain. Ammonia that is generated from excessive protein is alkaline. This may help to neutralize the stomach acid and would make the stools and gut pain better. However, using a high protein diet to address loose stools is not dealing with the root of the problem, if it is caused by excess stomach acid. Creating high ammonia levels via diet to neutralize acids treats the symptom but not the underlying imbalance in the body. Stomach acid is triggered by histamine reacting with H2 receptors in the stomach. So, a high protein diet may be increasing ammonia which is neutralizing the stomach acid and improving the gut issue. However, it is not addressing why you have excess acid in the first place nor is considering why there may be high histamine in the system (histamine is related to methylation function). In addition it is important to evaluate ammonia levels and to consider the consequences of high ammonia. I am not suggesting that individuals abandon the SCD diet, especially as it has made a positive difference for many people. However, I would suggest a test for Helicobacter pylori as that is often a causative agent for excess stomach acid. The use of mastic gum is reported to be very helpful for addressing this organism. I would suggest ? mastica gum, Stomach pH and Bowel support with meals. I would also suggest that you consider running a DDI urine amino acid test so that you can look at ammonia levels and amino acids while on the SCD diet. " I know that some of her pts eat very, very little protein at all so I guess if you look at a " normal " amount of protein that a person eats in a typical day of a regular diet, this would be considered high as well. I have tried to talk with my pts grandma about it and she is not even willing to try SCD at this point because now (with the exception of 3 GFCF chicken nuggets he al last week) only eats potato chips and GF pretzels (AHHHHHHHHH!!!!!!!!!) And his BH4 levels are still very low. She did state that she may try it after his levels are WNL. Sorry for upsetting you Jody. mother of Caden and Emmalynn > > I do not understand the part about being advised not to do SCD because > of high amonia levels. > How are these related? > > If you could point me in the direction of some information, I would > appreciate it. > > > Jody > mom to -7 and -9 > SCD 1/03 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 > > I totally agree with you. Sorry I should have added that to my post > earlier :-( I don't understand why she (Dr. Yasko) refers to it as > High protein diet. I don't think my son eat anymore protein now than > he ever did but he does eat tons of fruits and veggies which is a > miracle!!!!! > > She has some therories on what contributes to Autism some of which > includes genetic mutations. This is only one of the factors. I may > have the genetic markers that she is looking at but I did not have > other things that often accompanies children who become autistic (ie > ear infections, antibiotic use, high metals etc). > It sounds to me as if Dr. Yasko, (like Dr. Hicks) made conclusions about SCD without being familiar with it. Carol F. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 , I'm not upset with you or anyone. I am merely frustrated that SCD continues, for some unexplained reason, to be associated with Aktins-like, low-carb diets. I just thought that maybe some capital letters would help. Sorry for " yelling " . Maybe I just need to write something up that explains the difference between " Specific carbs " and " low carb " and add it to the FAQs on pecanbread. Something like: HOW IS SCD DIFFERENT FROM LOW-CARB DIETS? (Followed by an answer.) Maybe that would help everyone. Happy New Year! Jody mom to -7 and -9 SCD 1/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 , I'm not upset with you or anyone. I am merely frustrated that SCD continues, for some unexplained reason, to be associated with Aktins-like, low-carb diets. I just thought that maybe some capital letters would help. Sorry for " yelling " . Maybe I just need to write something up that explains the difference between " Specific carbs " and " low carb " and add it to the FAQs on pecanbread. Something like: HOW IS SCD DIFFERENT FROM LOW-CARB DIETS? (Followed by an answer.) Maybe that would help everyone. Happy New Year! Jody mom to -7 and -9 SCD 1/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 , I'm not upset with you or anyone. I am merely frustrated that SCD continues, for some unexplained reason, to be associated with Aktins-like, low-carb diets. I just thought that maybe some capital letters would help. Sorry for " yelling " . Maybe I just need to write something up that explains the difference between " Specific carbs " and " low carb " and add it to the FAQs on pecanbread. Something like: HOW IS SCD DIFFERENT FROM LOW-CARB DIETS? (Followed by an answer.) Maybe that would help everyone. Happy New Year! Jody mom to -7 and -9 SCD 1/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2006 Report Share Posted January 1, 2006 Carol, Graham has been SCD for about 3 months. I am looking to try Yasko's protocol as Graham has a low homocysteine and does not fit the typical DAN! protocol. FWIW, I do believe he has multiple genetic abnormalities as I believe that he is one of the few that have been autistic since birth. The original point of my post was not to upset anyone or downplay SCD. I just wondered if anyone had done the research to determine which of Yasko's supplements are indeed legal. Yes, I wil be doing a modified Yasko protocol as we will be staying with SCD. We have seen a tremendous amount of gut healing and I'm not willing to step backwards in that respect. a > > > > Graham doesn't fit into the " blanket " approach that our DAN has been > > trying to use for him. Is anyone here using Yasko's protocol? I know > > a lot of her supplements might be illegal, but I'm hoping that some > > are indeed legal. Thanks. a > > > Just trying to understand all thr protocols here. How long have you been using SCD? > Can you try it without illegal supplements? As healing takes place they may not all be > required. Some other programs can be compatible with SCD but the use of illegal > supplements may interfere. > > Carol F. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2006 Report Share Posted January 1, 2006 Carol, Graham has been SCD for about 3 months. I am looking to try Yasko's protocol as Graham has a low homocysteine and does not fit the typical DAN! protocol. FWIW, I do believe he has multiple genetic abnormalities as I believe that he is one of the few that have been autistic since birth. The original point of my post was not to upset anyone or downplay SCD. I just wondered if anyone had done the research to determine which of Yasko's supplements are indeed legal. Yes, I wil be doing a modified Yasko protocol as we will be staying with SCD. We have seen a tremendous amount of gut healing and I'm not willing to step backwards in that respect. a > > > > Graham doesn't fit into the " blanket " approach that our DAN has been > > trying to use for him. Is anyone here using Yasko's protocol? I know > > a lot of her supplements might be illegal, but I'm hoping that some > > are indeed legal. Thanks. a > > > Just trying to understand all thr protocols here. How long have you been using SCD? > Can you try it without illegal supplements? As healing takes place they may not all be > required. Some other programs can be compatible with SCD but the use of illegal > supplements may interfere. > > Carol F. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2006 Report Share Posted January 1, 2006 Carol, Graham has been SCD for about 3 months. I am looking to try Yasko's protocol as Graham has a low homocysteine and does not fit the typical DAN! protocol. FWIW, I do believe he has multiple genetic abnormalities as I believe that he is one of the few that have been autistic since birth. The original point of my post was not to upset anyone or downplay SCD. I just wondered if anyone had done the research to determine which of Yasko's supplements are indeed legal. Yes, I wil be doing a modified Yasko protocol as we will be staying with SCD. We have seen a tremendous amount of gut healing and I'm not willing to step backwards in that respect. a > > > > Graham doesn't fit into the " blanket " approach that our DAN has been > > trying to use for him. Is anyone here using Yasko's protocol? I know > > a lot of her supplements might be illegal, but I'm hoping that some > > are indeed legal. Thanks. a > > > Just trying to understand all thr protocols here. How long have you been using SCD? > Can you try it without illegal supplements? As healing takes place they may not all be > required. Some other programs can be compatible with SCD but the use of illegal > supplements may interfere. > > Carol F. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2006 Report Share Posted January 1, 2006 a, We generally research products as people ask about them. So, if you have a link or a list of supplements (with the full ingredients), we can tell you whether they are SCD compliant. I also want you to know that Elaine always said to do what was medically necessary for a child, even if that included illegal medications or supplements. She knew that it was not always possible to get what someone needed in an SCD compliant form. So, while we encourage parents to use all legal supplements, we know that it may not always be possible. Elaine said to remain 100% faithful to the dietary aspects and take whatever medication was needed. Jody mom to -7 and -9 SCD 1/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2006 Report Share Posted January 1, 2006 Jody, if I may, I would like to add some personnel experience that would most likely help some new individuals on this email list. The specific point that helped me the most, was obtaining a broad understanding of the principles behind the SCD program!! As I look back when starting the SCD program (information for my grandson and for me). a lot of my questions and misunderstanding would not existed if I had initially focused on understanding the overall objective and reasoning behind the SCD program, instead of starting into the details of the program right away. As I read the many questions by new individuals, I suspect most are lost in the details and thus are trying to accomplish the program by rote instead of by being guided what the SCD program is all about. I can understand that most people want to get started right away, but as we all know, whether it is the SCD program or some professional project, we need a firm foundation to support any initial and long term success. So for the new people who come to this list, strongly recommend that you read the " book " numerous times and you will find the answers to many of your questions and a clearer road to success with the SCD program. The " book " is the foundation and so this email list is primarily supportive of the book and is not a substitute for the " book. " I do have some concern about this list and the individuals who the provide the outstanding knowledge and information in support of it. This list is no different than many of the other email lists that I and others have visited and then watched as " burn out " slowly settled in. We need to be careful and considerate and not contribute to burn out of these kind and compassionate individuals who so ably support this email list. By the way, I am in no way suggesting valid questions be curbed, but only those that can be readily answered in the " book. " Best wishes, Sam. Re: Yasko and SCD? > , > > I'm not upset with you or anyone. > > I am merely frustrated that SCD continues, for some unexplained > reason, to be associated with Aktins-like, low-carb diets. > > I just thought that maybe some capital letters would help. > Sorry for " yelling " . > > Maybe I just need to write something up that explains the difference > between " Specific carbs " and " low carb " and add it to the FAQs on > pecanbread. > Something like: > > HOW IS SCD DIFFERENT FROM LOW-CARB DIETS? > > (Followed by an answer.) > > > Maybe that would help everyone. > > > Happy New Year! > > Jody > mom to -7 and -9 > SCD 1/03 > > > > > > > > For information on the Specific Carbohydrate Diet, please read the book > _Breaking the Vicious Cycle_ by Elaine Gottschall and read the following > websites: > http://www.breakingtheviciouscycle.info > and > http://www.pecanbread.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2006 Report Share Posted January 1, 2006 Sam, Thanks for your concern for us " old-timers " . As you can see by my signature, we began our SCD journey almost 3 years ago. It's been not quite 2 1/2 years since I reorganized and relaunched pecanbread.com. I really wanted there to be an organized resource for parents starting the diet. Mimi had much of the information, but I wanted parents to be able to find what they were looking for. I reorganized everything into " chapters " /webpages. Where there were gaps in the information, I asked long-time SCDers to help me write what was needed. I've been moderating the list for almost 2 1/2 years. Sheila is even an older, old-timer than me (LOL) and has graciously helped moderate the list for a couple of years even though she doesn't have a child on the spectrum. But as Sam says, a lot of information can be found in BTVC and a lot of questions about starting the diet for ASD kids can be found on pecanbread.com. Perhaps at some point, we can take a poll to see what new sections might help newcomers to the pecanbread.com website. I am way behind on adding recipes. One day life will slow down a bit and I'll get those new recipes added. Happy New Year to everyone! Jody mom to -7 and -9 SCD 1/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2006 Report Share Posted January 1, 2006 Sam, Thanks for your concern for us " old-timers " . As you can see by my signature, we began our SCD journey almost 3 years ago. It's been not quite 2 1/2 years since I reorganized and relaunched pecanbread.com. I really wanted there to be an organized resource for parents starting the diet. Mimi had much of the information, but I wanted parents to be able to find what they were looking for. I reorganized everything into " chapters " /webpages. Where there were gaps in the information, I asked long-time SCDers to help me write what was needed. I've been moderating the list for almost 2 1/2 years. Sheila is even an older, old-timer than me (LOL) and has graciously helped moderate the list for a couple of years even though she doesn't have a child on the spectrum. But as Sam says, a lot of information can be found in BTVC and a lot of questions about starting the diet for ASD kids can be found on pecanbread.com. Perhaps at some point, we can take a poll to see what new sections might help newcomers to the pecanbread.com website. I am way behind on adding recipes. One day life will slow down a bit and I'll get those new recipes added. Happy New Year to everyone! Jody mom to -7 and -9 SCD 1/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2006 Report Share Posted January 1, 2006 Sam, Thanks for your concern for us " old-timers " . As you can see by my signature, we began our SCD journey almost 3 years ago. It's been not quite 2 1/2 years since I reorganized and relaunched pecanbread.com. I really wanted there to be an organized resource for parents starting the diet. Mimi had much of the information, but I wanted parents to be able to find what they were looking for. I reorganized everything into " chapters " /webpages. Where there were gaps in the information, I asked long-time SCDers to help me write what was needed. I've been moderating the list for almost 2 1/2 years. Sheila is even an older, old-timer than me (LOL) and has graciously helped moderate the list for a couple of years even though she doesn't have a child on the spectrum. But as Sam says, a lot of information can be found in BTVC and a lot of questions about starting the diet for ASD kids can be found on pecanbread.com. Perhaps at some point, we can take a poll to see what new sections might help newcomers to the pecanbread.com website. I am way behind on adding recipes. One day life will slow down a bit and I'll get those new recipes added. Happy New Year to everyone! Jody mom to -7 and -9 SCD 1/03 Quote Link to comment Share on other sites More sharing options...
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