Guest guest Posted July 17, 2007 Report Share Posted July 17, 2007 Carol Said: " I am very concerned for you and troubled by your recent spate of posts about Kiki. What concerns me is that you praise SCD to the roof and when things don't go well for you speak about giving up. Is this giving up SCD for Kiki, for you, for the family? Am I correct that the mito is a completely separate issue? If so does it do harm to keep on with SCD? What other foods would you give her to get in more calories? never mind your loyalty, you must do what is best for your girl!.......You have fought so hard, come so far, contributed so much and won the hearts of the entire list serve............You are very much in my thoughts and are a brave and caring person. " Dear List serves, and those who I have won the hearts over, Mitochondrial disease affects myself, daughter and son. I now know why this is why are list of problems was so long. www.umdf.org<http://www.umdf.org/>. This is the case with mito people. Autism and digestion issues are just one part of it. Due to mitochondrial disease, at this time we are going to be experimenting with things that are not SCD legal. In the last weeks I have been going through much turmoil around this. I am not giving into cravings of candy and cake...this is not what my family will be eating. I Have reread Dr. Haas's book, have reviewed everything in Elaine's archives, and have come to the conclusion that this is the best option. AS many know, WE have done FANATICAL SCD for a year and a half, prior to this we where Starch and sugar free for over a year, just not " SCD fanatical " , so some do not count it. Regardless, I say that this has been 2 and one half years for us, healing and having much success....but we are at a wall and a cross roads. The results that we have had are so note worthy I am writing a book (not to help others, but to tell our story), and have committed to helping others often in the last year, because I was so impressed by SCD TM. Yet, we are ready to take the plunge into the unknown, to see if we can some how get to the next level of bringing up our quality of life even a bit more. Dr. Haas, and even Elaine said that after a while on SCD this might be possible. So we will see. With mitochondrial disease we are dealing with the unknown. The latest cherry on the almond cakes is that our son has recently shown early warning that he could be loosing vision in his left eye due to Mitochondrial disease (just one year ago his vision was normal). It is frightening to me, that my son could go blind, and that my daughter might die. My daughter has yet to sleep through the night due to metabolic disorder and hunger, eating 300+ calories a day, and summer heat threatens to dehydrate her often...I am ragged and full of worry. It is obvious that this condition has stood undiagnosed for generations in my family. Many before us have died young from mito complications, but did not know it, and many have gone blind and deaf in my family tree. We are lucky to know the name of this " family " monster. We have come to conclusion that it is time to try something new. What is suggested is not SCD legal. With the United Mitochondrial Foundations suggestions, it could blow up in our face, or good things could result. I do not know. One thing is for certain, anything we do will be built on the FOUNDATION of SCDiet TM. WE will never, ever eat the Sadiet again. Yet...we will be altering it so much, I will have to call it " Kiki's diet " and will no longer be following strict guidelines in the BTVC book. Some act as if I have now become a " trader " , and I do not feel welcomed to SCD anymore. When in reality, I am doing what is best for my family....even if I crawl back to SCD intro....... if this does not work for us. Helping out on the serve, and teaching those who need it " fanatical SCD " has been a God send to me, because it has distracted me from my troubles. This year has not been easy. Receiving the hundreds of " thank yous " for " talking too much " and pouring out my soul to show that others that SCD works....has been the best thing that has happened to me during this crises. Yet, now I do not know if I am welcomed to continue to help...if we are no longer " fanatical " SCD. I know in the past that Pecan Bread has hired moderators that don't even practice SCD themselves, doing it just for their children. I was never hired...I just volunteered. I do not know If this would put me in this category or not. I would not confuse anyone with talk about " illegal " suggestions. Nor talk about our experiment with straying from SCD, or confuse others with " Kiki's diet " . I will assume, until told otherwise to fly the SCD TM coup. It is up to others response today, if I will continue to volunteer on the serves or not. I have truly enjoyed helping others to receive the returned health that SCD has granted my family. Feel free to contact me at: ajbunce@... if I do not respond on the serves. For those who are new to SCD, and have read this....give it your all....do it " fanatically " and see. It is truly amazing where we are today compared to when we had but gut bugs. I never lied about the successes we had. Recently, when I saw my daughters recent CDSA that was normal...and biopsy and EGD that showed her intestines healed...I had only ONE thing to thank. 100% SCD convictions. For some of us SCD is for a life time, for others it might not be. WE all have a journey...one thing is for certain...if what we are about to do doesn't work.....the family of yaks will be back to 100% SCD convictions!! Please pray for us. Mitochondrial conditions can be progressive. It is like we are constantly taming the Monster within...and this is for life...and NOTHING is certain. Until stem cell research is allowed to progress....there is NO CURE for us....and people like us. So when the time comes...make your vote to stop one of the CAUSES for autism and much suffering. What a journey! Sincerely, Antoinette and family of Five Silly Yaks. My favorite quotes: " To be nobody but yourself in a world that is doing its best to make you everyone else, is to fight the hardest battle anyone can fight. " E E Cummings " Be the change you want to see in the world " Mohandas Gandhi " The important thing is never to stop questioning. " -Albert Einstein Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2007 Report Share Posted July 17, 2007 Antionette, I will say a prayer for you and your silly yaks. Thank you for your email in July 2006 that led The Bond Family to the scd. I believe the scd is just the beginning of a journey for my family. Thank you and God Bless, Cathy Mom to celicas , P.S. help as much as you want..but take care of yourself and your family first...that's my opinion > > Carol Said: " I am very concerned for you and troubled by your recent spate of posts about Kiki. What concerns me is that you praise SCD to the roof and when things don't go well for you speak about giving up. Is this giving up SCD for Kiki, for you, for the family? Am I correct that the mito is a completely separate issue? If so does it do harm to keep on with SCD? What other foods would you give her to get in more calories? never mind your loyalty, you must do what is best for your girl!.......You have fought so hard, come so far, contributed so much and won the hearts of the entire list serve............You are very much in my thoughts and are a brave and caring person. " > > Dear List serves, and those who I have won the hearts over, > > Mitochondrial disease affects myself, daughter and son. I now know why this is why are list of problems was so long. www.umdf.org<http://www.umdf.org/>. This is the case with mito people. Autism and digestion issues are just one part of it. Due to mitochondrial disease, at this time we are going to be experimenting with things that are not SCD legal. In the last weeks I have been going through much turmoil around this. I am not giving into cravings of candy and cake...this is not what my family will be eating. > > I Have reread Dr. Haas's book, have reviewed everything in Elaine's archives, and have come to the conclusion that this is the best option. AS many know, WE have done FANATICAL SCD for a year and a half, prior to this we where Starch and sugar free for over a year, just not " SCD fanatical " , so some do not count it. Regardless, I say that this has been 2 and one half years for us, healing and having much success....but we are at a wall and a cross roads. > > The results that we have had are so note worthy I am writing a book (not to help others, but to tell our story), and have committed to helping others often in the last year, because I was so impressed by SCD TM. > > Yet, we are ready to take the plunge into the unknown, to see if we can some how get to the next level of bringing up our quality of life even a bit more. Dr. Haas, and even Elaine said that after a while on SCD this might be possible. So we will see. With mitochondrial disease we are dealing with the unknown. > > The latest cherry on the almond cakes is that our son has recently shown early warning that he could be loosing vision in his left eye due to Mitochondrial disease (just one year ago his vision was normal). It is frightening to me, that my son could go blind, and that my daughter might die. My daughter has yet to sleep through the night due to metabolic disorder and hunger, eating 300+ calories a day, and summer heat threatens to dehydrate her often...I am ragged and full of worry. It is obvious that this condition has stood undiagnosed for generations in my family. Many before us have died young from mito complications, but did not know it, and many have gone blind and deaf in my family tree. We are lucky to know the name of this " family " monster. > > We have come to conclusion that it is time to try something new. What is suggested is not SCD legal. With the United Mitochondrial Foundations suggestions, it could blow up in our face, or good things could result. I do not know. One thing is for certain, anything we do will be built on the FOUNDATION of SCDiet TM. WE will never, ever eat the Sadiet again. Yet...we will be altering it so much, I will have to call it " Kiki's diet " and will no longer be following strict guidelines in the BTVC book. > > Some act as if I have now become a " trader " , and I do not feel welcomed to SCD anymore. When in reality, I am doing what is best for my family....even if I crawl back to SCD intro....... if this does not work for us. > > Helping out on the serve, and teaching those who need it " fanatical SCD " has been a God send to me, because it has distracted me from my troubles. This year has not been easy. Receiving the hundreds of " thank yous " for " talking too much " and pouring out my soul to show that others that SCD works....has been the best thing that has happened to me during this crises. > > Yet, now I do not know if I am welcomed to continue to help...if we are no longer " fanatical " SCD. I know in the past that Pecan Bread has hired moderators that don't even practice SCD themselves, doing it just for their children. I was never hired...I just volunteered. I do not know If this would put me in this category or not. I would not confuse anyone with talk about " illegal " suggestions. Nor talk about our experiment with straying from SCD, or confuse others with " Kiki's diet " . I will assume, until told otherwise to fly the SCD TM coup. > > It is up to others response today, if I will continue to volunteer on the serves or not. I have truly enjoyed helping others to receive the returned health that SCD has granted my family. Feel free to contact me at: ajbunce@... if I do not respond on the serves. > > For those who are new to SCD, and have read this....give it your all....do it " fanatically " and see. It is truly amazing where we are today compared to when we had but gut bugs. I never lied about the successes we had. Recently, when I saw my daughters recent CDSA that was normal...and biopsy and EGD that showed her intestines healed...I had only ONE thing to thank. 100% SCD convictions. For some of us SCD is for a life time, for others it might not be. WE all have a journey...one thing is for certain...if what we are about to do doesn't work.....the family of yaks will be back to 100% SCD convictions!! > > Please pray for us. Mitochondrial conditions can be progressive. It is like we are constantly taming the Monster within...and this is for life...and NOTHING is certain. Until stem cell research is allowed to progress....there is NO CURE for us....and people like us. So when the time comes...make your vote to stop one of the CAUSES for autism and much suffering. What a journey! > > > Sincerely, Antoinette and family of Five Silly Yaks. > > My favorite quotes: > > " To be nobody but yourself in a world that is doing its best to make you > everyone else, is to fight the hardest battle anyone can fight. " E E Cummings > > " Be the change you want to see in the world " Mohandas Gandhi > > " The important thing is never to stop questioning. " > -Albert Einstein > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 I think you are thinking only in terms of diet, when the answer might be found in another direction. Have you tried MB12? > > Carol Said: " I am very concerned for you and troubled by your recent spate of posts about Kiki. What concerns me is that you praise SCD to the roof and when things don't go well for you speak about giving up. Is this giving up SCD for Kiki, for you, for the family? Am I correct that the mito is a completely separate issue? If so does it do harm to keep on with SCD? What other foods would you give her to get in more calories? never mind your loyalty, you must do what is best for your girl!.......You have fought so hard, come so far, contributed so much and won the hearts of the entire list serve............You are very much in my thoughts and are a brave and caring person. " > > Dear List serves, and those who I have won the hearts over, > > Mitochondrial disease affects myself, daughter and son. I now know why this is why are list of problems was so long. www.umdf.org<http://www.umdf.org/>. This is the case with mito people. Autism and digestion issues are just one part of it. Due to mitochondrial disease, at this time we are going to be experimenting with things that are not SCD legal. In the last weeks I have been going through much turmoil around this. I am not giving into cravings of candy and cake...this is not what my family will be eating. > > I Have reread Dr. Haas's book, have reviewed everything in Elaine's archives, and have come to the conclusion that this is the best option. AS many know, WE have done FANATICAL SCD for a year and a half, prior to this we where Starch and sugar free for over a year, just not " SCD fanatical " , so some do not count it. Regardless, I say that this has been 2 and one half years for us, healing and having much success....but we are at a wall and a cross roads. > > The results that we have had are so note worthy I am writing a book (not to help others, but to tell our story), and have committed to helping others often in the last year, because I was so impressed by SCD TM. > > Yet, we are ready to take the plunge into the unknown, to see if we can some how get to the next level of bringing up our quality of life even a bit more. Dr. Haas, and even Elaine said that after a while on SCD this might be possible. So we will see. With mitochondrial disease we are dealing with the unknown. > > The latest cherry on the almond cakes is that our son has recently shown early warning that he could be loosing vision in his left eye due to Mitochondrial disease (just one year ago his vision was normal). It is frightening to me, that my son could go blind, and that my daughter might die. My daughter has yet to sleep through the night due to metabolic disorder and hunger, eating 300+ calories a day, and summer heat threatens to dehydrate her often...I am ragged and full of worry. It is obvious that this condition has stood undiagnosed for generations in my family. Many before us have died young from mito complications, but did not know it, and many have gone blind and deaf in my family tree. We are lucky to know the name of this " family " monster. > > We have come to conclusion that it is time to try something new. What is suggested is not SCD legal. With the United Mitochondrial Foundations suggestions, it could blow up in our face, or good things could result. I do not know. One thing is for certain, anything we do will be built on the FOUNDATION of SCDiet TM. WE will never, ever eat the Sadiet again. Yet...we will be altering it so much, I will have to call it " Kiki's diet " and will no longer be following strict guidelines in the BTVC book. > > Some act as if I have now become a " trader " , and I do not feel welcomed to SCD anymore. When in reality, I am doing what is best for my family....even if I crawl back to SCD intro....... if this does not work for us. > > Helping out on the serve, and teaching those who need it " fanatical SCD " has been a God send to me, because it has distracted me from my troubles. This year has not been easy. Receiving the hundreds of " thank yous " for " talking too much " and pouring out my soul to show that others that SCD works....has been the best thing that has happened to me during this crises. > > Yet, now I do not know if I am welcomed to continue to help...if we are no longer " fanatical " SCD. I know in the past that Pecan Bread has hired moderators that don't even practice SCD themselves, doing it just for their children. I was never hired...I just volunteered. I do not know If this would put me in this category or not. I would not confuse anyone with talk about " illegal " suggestions. Nor talk about our experiment with straying from SCD, or confuse others with " Kiki's diet " . I will assume, until told otherwise to fly the SCD TM coup. > > It is up to others response today, if I will continue to volunteer on the serves or not. I have truly enjoyed helping others to receive the returned health that SCD has granted my family. Feel free to contact me at: ajbunce@... if I do not respond on the serves. > > For those who are new to SCD, and have read this....give it your all....do it " fanatically " and see. It is truly amazing where we are today compared to when we had but gut bugs. I never lied about the successes we had. Recently, when I saw my daughters recent CDSA that was normal...and biopsy and EGD that showed her intestines healed...I had only ONE thing to thank. 100% SCD convictions. For some of us SCD is for a life time, for others it might not be. WE all have a journey...one thing is for certain...if what we are about to do doesn't work.....the family of yaks will be back to 100% SCD convictions!! > > Please pray for us. Mitochondrial conditions can be progressive. It is like we are constantly taming the Monster within...and this is for life...and NOTHING is certain. Until stem cell research is allowed to progress....there is NO CURE for us....and people like us. So when the time comes...make your vote to stop one of the CAUSES for autism and much suffering. What a journey! > > > Sincerely, Antoinette and family of Five Silly Yaks. > > My favorite quotes: > > " To be nobody but yourself in a world that is doing its best to make you > everyone else, is to fight the hardest battle anyone can fight. " E E Cummings > > " Be the change you want to see in the world " Mohandas Gandhi > > " The important thing is never to stop questioning. " > -Albert Einstein > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2007 Report Share Posted July 19, 2007 Thanks Antoinette, I loved the quotes. Your family is just one more reason for me to vote for stem cell research. I've been lurking for a very long time. (Mainly because I've been reading 'pecanbread' so much its been ruining my eyesight...) One comment I wanted to add to your excellent post.... We started our boy out on the casein/glutin free diet, and noticed positive changes. We kept track of all the foods he was eating, and were sensitive to reactions he was having, and noticed that soy was also getting him 'high.' So we cut soy out. (There went all the soy based substitutions...) We were making progress, but still feeling like we were up against another wall. We stumbled across the 'pecanbread' site, and decided it was worth a try. (It made sense to not only eliminate the addictive substances that were leaking through, but also eliminate the cause of the leaks as well. Gem is now a mainstreamed 2nd grader in our local elementary school, and has been cf/gf scd for almost five years. We cant believe the difference! We still have a long way to go, and minor infractions still cause reactions, so we know that this lifestyle will probably be for a very long time.... but we have hope now, where as before we couldn't really even communicate with him. What am I trying to say? I guess its that we all need to look at our children, and be sensitive to 'undesired' behavior, keep a food log, and tailor the program to our kids. I personally recommend gf/cf together with scd for our kids, but each child has different issues. (For instance, our Gen can do fine with one apple a day, but anything over one and a half, and it comes out the other end in undigested bite sized chunks. Luckily, it seems to go away over night.) Our prayers are with you Antoinette. You are working with a very complicated assortment of issues which all domino into each other. Good Luck! -Allan. away overnight without long term side effects.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2007 Report Share Posted July 19, 2007 Mimi, has asked me to stay! I a honored. I am so glad that others are seeing the importance of Stem Cell therapy. It truly could be the answers to many horrible diseases. Until then we will just have to " hang in there " and do our best....all of us. Thank you for all the love and support I have received...on and off serve. It is amazing how sweet everyone has been. Antoinette and house of Silly Yaks! Quote Link to comment Share on other sites More sharing options...
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