Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 Connie, Yes, I agree with everything you said. I think there is also a varied response to some treatments like the diet due to varied levels of IMPLEMENTATION of the diet. Being TRULY GFCF means none...NO products with wheat or casein. This is very hard, I think some people try it, but it is hard to do well and so you see mixed results. Some people use the enzymes and just go ahead and eat wheat or dairy, and I guess if your child CAN do that AND STILL make progress, then that is great. We went very strictly on the GFCF diet and saw positive results immediately and continuously. So if someone does the diet and does not see an affect, it could be that the diet just has no benefit for that child, but I think the parent should review in their mind, " Did we REALLY follow the diet, strictly and religously? " I applaud you that you tried it again after getting test results indicating a need to do so. Even though we have been very strictly following the GFCF diet, we are finding it hard to go Sugar-Free. Our doctor has recently suggested we try going sugar-free to see if there is improvement in some issues with both my children but especially the one with Autism. We haven't gone TOTALLY sugar-free, it IS hard. But in just REDUCING his sugar, we have seen some positive improvement. So we are working towards the sugar-free. I agree with you that most of what you hear on the list is truth. The right question to ask about what you hear on this list is NOT , " Is it true? " but rather, " Will it work for my child? " For most of what we read on this list to NOT be true, it would mean that MOST parents are either lying or greatly exaggerating about the progress they are observing in their children. I don't believe either to be the case. For my child, the change has been very dramatic, he went from being a non-verbal child with head banging on the floor, foul, disgusting diapers and a zombie like awareness- to an aware child capable of functioning in a normal class of Kindergarteners. He is not yet recovered, but he is showing promising signs that it is possible. I explain this for the purpose of illustrating that the changes have been dramatic and DIRECTLY associated with his treatment. It is not a case where it is just our bias as parents and we are interpreting progress where none exists- WE HAVE TEST SCORES TO PROVE IT!! The unfortunate reality is that as of now, medical science just doesn't have a complete understanding of this condition and doctors can't do it all for us. Successful Autism treatment requires an active, involved parent (which I know we all are, I am just speaking generally) trying these therapies and working WITH an interested doctor to find the RIGHT COMBINATION of therapies to help each indivdual child. J. P. Reirdon Webmaster <http://www.featnt.org/> http://www.featnt.org " Building a Bridge of Hope " Webmaster <http://www.autismtreatment.info/> http://www.AutismTreatment.info/ You CAN treat Autism!! Get treatment tips for children with Autism, PDD and Aperger's Syndrome from parents who have successfully helped their children. Webmaster http://www.StarThrowers.org/ <http://www.starthrowers.org/> Fundraising for In-Home treatment programs what helps our kids? There's been mention lately about taking with a grain of salt what many parents of autistic kids are saying about what works to help their kids. Is it this? Is it that? Many confused by the abundance of information. Let me just say, that there isn't just ONE answer. But most of what you are hearing on this list is based on truth. Should I try this or that. In truth, the answer is that it takes doing many things at once to accomplish an end goal. I had tried the gfcf diet a few years back when I first heard about it - but I didn't see a lot of improvement. Not like many of the people had seen. But when tests showed that my children did need to be on the diet, we were back on it - this time using enzymes to go with it - and saw better results. I also have them on Omega-3's and am chelating heavy metals out of their bodies. And people are starting to see the results! And NO it is not just because they have gotten older. Why do I know this? Because my daughter who is affected didn't show improvements with age - it was AFTER we implemented different interventions that improvement has come. We have also done sound therapy and the last few months, horseback riding therapy. I no longer have them on meds to keep their moods under control!! They are talking better, behave better and respond better. My one son, who was a terror to wash his hair, doesn't mind it now. This year, at age 9!!, he finally is in the big swimming pool, instead of staying in the baby pool - we thought he would still be there at age 12! I also cover all of our efforts with prayer! I went to a seminar last summer by Dr. Jeff Bradstreet and his colleagues. They brought all of this together. They have seen the improvements using these approaches. I know there are other things that I could probably do, but right now, I'm comfortable with what I'm doing. I can only do so much. I hope this helps someone. That's what it was meant to do. There is so much more information for people new to this than when my kids were diagnosed or when we were trying to find a diagnosis even. Blessings Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 Connie, Yes, I agree with everything you said. I think there is also a varied response to some treatments like the diet due to varied levels of IMPLEMENTATION of the diet. Being TRULY GFCF means none...NO products with wheat or casein. This is very hard, I think some people try it, but it is hard to do well and so you see mixed results. Some people use the enzymes and just go ahead and eat wheat or dairy, and I guess if your child CAN do that AND STILL make progress, then that is great. We went very strictly on the GFCF diet and saw positive results immediately and continuously. So if someone does the diet and does not see an affect, it could be that the diet just has no benefit for that child, but I think the parent should review in their mind, " Did we REALLY follow the diet, strictly and religously? " I applaud you that you tried it again after getting test results indicating a need to do so. Even though we have been very strictly following the GFCF diet, we are finding it hard to go Sugar-Free. Our doctor has recently suggested we try going sugar-free to see if there is improvement in some issues with both my children but especially the one with Autism. We haven't gone TOTALLY sugar-free, it IS hard. But in just REDUCING his sugar, we have seen some positive improvement. So we are working towards the sugar-free. I agree with you that most of what you hear on the list is truth. The right question to ask about what you hear on this list is NOT , " Is it true? " but rather, " Will it work for my child? " For most of what we read on this list to NOT be true, it would mean that MOST parents are either lying or greatly exaggerating about the progress they are observing in their children. I don't believe either to be the case. For my child, the change has been very dramatic, he went from being a non-verbal child with head banging on the floor, foul, disgusting diapers and a zombie like awareness- to an aware child capable of functioning in a normal class of Kindergarteners. He is not yet recovered, but he is showing promising signs that it is possible. I explain this for the purpose of illustrating that the changes have been dramatic and DIRECTLY associated with his treatment. It is not a case where it is just our bias as parents and we are interpreting progress where none exists- WE HAVE TEST SCORES TO PROVE IT!! The unfortunate reality is that as of now, medical science just doesn't have a complete understanding of this condition and doctors can't do it all for us. Successful Autism treatment requires an active, involved parent (which I know we all are, I am just speaking generally) trying these therapies and working WITH an interested doctor to find the RIGHT COMBINATION of therapies to help each indivdual child. J. P. Reirdon Webmaster <http://www.featnt.org/> http://www.featnt.org " Building a Bridge of Hope " Webmaster <http://www.autismtreatment.info/> http://www.AutismTreatment.info/ You CAN treat Autism!! Get treatment tips for children with Autism, PDD and Aperger's Syndrome from parents who have successfully helped their children. Webmaster http://www.StarThrowers.org/ <http://www.starthrowers.org/> Fundraising for In-Home treatment programs what helps our kids? There's been mention lately about taking with a grain of salt what many parents of autistic kids are saying about what works to help their kids. Is it this? Is it that? Many confused by the abundance of information. Let me just say, that there isn't just ONE answer. But most of what you are hearing on this list is based on truth. Should I try this or that. In truth, the answer is that it takes doing many things at once to accomplish an end goal. I had tried the gfcf diet a few years back when I first heard about it - but I didn't see a lot of improvement. Not like many of the people had seen. But when tests showed that my children did need to be on the diet, we were back on it - this time using enzymes to go with it - and saw better results. I also have them on Omega-3's and am chelating heavy metals out of their bodies. And people are starting to see the results! And NO it is not just because they have gotten older. Why do I know this? Because my daughter who is affected didn't show improvements with age - it was AFTER we implemented different interventions that improvement has come. We have also done sound therapy and the last few months, horseback riding therapy. I no longer have them on meds to keep their moods under control!! They are talking better, behave better and respond better. My one son, who was a terror to wash his hair, doesn't mind it now. This year, at age 9!!, he finally is in the big swimming pool, instead of staying in the baby pool - we thought he would still be there at age 12! I also cover all of our efforts with prayer! I went to a seminar last summer by Dr. Jeff Bradstreet and his colleagues. They brought all of this together. They have seen the improvements using these approaches. I know there are other things that I could probably do, but right now, I'm comfortable with what I'm doing. I can only do so much. I hope this helps someone. That's what it was meant to do. There is so much more information for people new to this than when my kids were diagnosed or when we were trying to find a diagnosis even. Blessings Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 Wow Connie, so glad to hear your kids are doing so well. I know it's been a difficult road for you so to hear such progress is really exciting. Interesting that you mentioned that the combo of enzymes and gfcf diet seemed to work better. I wonder how many kids who respond well to the diet do that combo and how many who don't didn't do that combo. My son took enzymes for about six months before starting the diet and continued them until about six months ago. He doesn't seem to need the enzymes now (after 7 years on them) but will have a small reaction when eating milk products now -- though nothing like he used to have. He was totally milk product free for 7 years before we retried them almost a year ago. He's been gluten-free for about 6 years and we plan to give it another year until retrying them. I also think success on the diet depends greatly on what you substitute. Alot of the substitute products contain gums that tend to cause more problems in the gut leading to more yeast in some kids. Plus, many kids are also sensative to soy and other products you might substitute or bump up when eliminating gluten and caesin which gives a false view of how the diet is working. Sometimes this stuff is so hard to get right. Would be nice if we had a reliable computer test that told us exactly what they should eat, what is messing up their bodies most, appropriate interventions, etc. Electrodermal testing may be getting there but it doesn't seem that reliable yet. Perhaps it will be by the time the next round of kids comes along. Gaylen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 Wow Connie, so glad to hear your kids are doing so well. I know it's been a difficult road for you so to hear such progress is really exciting. Interesting that you mentioned that the combo of enzymes and gfcf diet seemed to work better. I wonder how many kids who respond well to the diet do that combo and how many who don't didn't do that combo. My son took enzymes for about six months before starting the diet and continued them until about six months ago. He doesn't seem to need the enzymes now (after 7 years on them) but will have a small reaction when eating milk products now -- though nothing like he used to have. He was totally milk product free for 7 years before we retried them almost a year ago. He's been gluten-free for about 6 years and we plan to give it another year until retrying them. I also think success on the diet depends greatly on what you substitute. Alot of the substitute products contain gums that tend to cause more problems in the gut leading to more yeast in some kids. Plus, many kids are also sensative to soy and other products you might substitute or bump up when eliminating gluten and caesin which gives a false view of how the diet is working. Sometimes this stuff is so hard to get right. Would be nice if we had a reliable computer test that told us exactly what they should eat, what is messing up their bodies most, appropriate interventions, etc. Electrodermal testing may be getting there but it doesn't seem that reliable yet. Perhaps it will be by the time the next round of kids comes along. Gaylen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 On the sugar- free issue... My son is now completely sugar-free and has been for several months. I recently added Puffins cereal, it's made with rice and honey. I saw no problems with this added in but he has only had it 3 separate times over the last 2 wks. However, he is continuing to progress. The biggest change I saw was removing fruits. Up until about 2 1/2 months ago he had to have a bit of baby food fruit on the top of each bite he had. It's taken 10 months to get to the point where I now know he is getting nothing he shouldn't have. At the same time he is now willing to accept alternative snacks and loves them. (sweet potato and veggie chips) He's never had bread in his life, only ate crackers and pretzels previously. We are about to attempt the introduction of a sandwhich to him. I strayed sorry- back to sugar, have you tried Xlitol? There is a website that you can purchas it in bulk from. Many health food stores and some dr's actually carry it. It's a one to one ratio to sugar. I'm hoping to have time this weekend to use it in some snack cooking to add back a small amount of sweet flavored treats such as ice cream. (made with vance's dairy free) Lynn Austin 3 yrs (blind with LCA and ASD, non-verbal) > Connie, > > Yes, I agree with everything you said. > > I think there is also a varied response to some treatments like the diet due > to varied levels of IMPLEMENTATION of the diet. Being TRULY GFCF means > none...NO products with wheat or casein. This is very hard, I think some > people try it, but it is hard to do well and so you see mixed results. > > Some people use the enzymes and just go ahead and eat wheat or dairy, and I > guess if your child CAN do that AND STILL make progress, then that is great. > We went very strictly on the GFCF diet and saw positive results immediately > and continuously. > > So if someone does the diet and does not see an affect, it could be that the > diet just has no benefit for that child, but I think the parent should > review in their mind, " Did we REALLY follow the diet, strictly and > religously? " I applaud you that you tried it again after getting test > results indicating a need to do so. > > Even though we have been very strictly following the GFCF diet, we are > finding it hard to go Sugar-Free. Our doctor has recently suggested we try > going sugar-free to see if there is improvement in some issues with both my > children but especially the one with Autism. We haven't gone TOTALLY > sugar-free, it IS hard. But in just REDUCING his sugar, we have seen some > positive improvement. So we are working towards the sugar-free. > > I agree with you that most of what you hear on the list is truth. The right > question to ask about what you hear on this list is NOT , " Is it true? " but > rather, " Will it work for my child? " > > For most of what we read on this list to NOT be true, it would mean that > MOST parents are either lying or greatly exaggerating about the progress > they are observing in their children. I don't believe either to be the > case. For my child, the change has been very dramatic, he went from being a > non-verbal child with head banging on the floor, foul, disgusting diapers > and a zombie like awareness- to an aware child capable of functioning in a > normal class of Kindergarteners. He is not yet recovered, but he is showing > promising signs that it is possible. I explain this for the purpose of > illustrating that the changes have been dramatic and DIRECTLY associated > with his treatment. It is not a case where it is just our bias as parents > and we are interpreting progress where none exists- WE HAVE TEST SCORES TO > PROVE IT!! > > The unfortunate reality is that as of now, medical science just doesn't have > a complete understanding of this condition and doctors can't do it all for > us. Successful Autism treatment requires an active, involved parent (which > I know we all are, I am just speaking generally) trying these therapies and > working WITH an interested doctor to find the RIGHT COMBINATION of therapies > to help each indivdual child. > > J. P. Reirdon > Webmaster > <http://www.featnt.org/> http://www.featnt.org > " Building a Bridge of Hope " > > Webmaster > <http://www.autismtreatment.info/> http://www.AutismTreatment.info/ > You CAN treat Autism!! > Get treatment tips for children with Autism, PDD and Aperger's Syndrome from > parents who have successfully helped their children. > > > Webmaster > http://www.StarThrowers.org/ <http://www.starthrowers.org/> > Fundraising for In-Home treatment programs > > > > > > what helps our kids? > > > There's been mention lately about taking with a grain of salt what many > parents of autistic kids are saying about what works to help their kids. Is > it this? Is it that? Many confused by the abundance of information. Let > me just say, that there isn't just ONE answer. But most of what you are > hearing on this list is based on truth. Should I try this or that. In > truth, the answer is that it takes doing many things at once to accomplish > an end goal. > > I had tried the gfcf diet a few years back when I first heard about it - but > I didn't see a lot of improvement. Not like many of the people had seen. > But when tests showed that my children did need to be on the diet, we were > back on it - this time using enzymes to go with it - and saw better results. > I also have them on Omega-3's and am chelating heavy metals out of their > bodies. And people are starting to see the results! And NO it is not just > because they have gotten older. Why do I know this? Because my daughter > who is affected didn't show improvements with age - it was AFTER we > implemented different interventions that improvement has come. We have also > done sound therapy and the last few months, horseback riding therapy. > > I no longer have them on meds to keep their moods under control!! They are > talking better, behave better and respond better. My one son, who was a > terror to wash his hair, doesn't mind it now. This year, at age 9!!, he > finally is in the big swimming pool, instead of staying in the baby pool - > we thought he would still be there at age 12! I also cover all of our > efforts with prayer! > > I went to a seminar last summer by Dr. Jeff Bradstreet and his colleagues. > They brought all of this together. They have seen the improvements using > these approaches. I know there are other things that I could probably do, > but right now, I'm comfortable with what I'm doing. I can only do so much. > > > I hope this helps someone. That's what it was meant to do. There is so > much more information for people new to this than when my kids were > diagnosed or when we were trying to find a diagnosis even. > > Blessings > Connie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 On the sugar- free issue... My son is now completely sugar-free and has been for several months. I recently added Puffins cereal, it's made with rice and honey. I saw no problems with this added in but he has only had it 3 separate times over the last 2 wks. However, he is continuing to progress. The biggest change I saw was removing fruits. Up until about 2 1/2 months ago he had to have a bit of baby food fruit on the top of each bite he had. It's taken 10 months to get to the point where I now know he is getting nothing he shouldn't have. At the same time he is now willing to accept alternative snacks and loves them. (sweet potato and veggie chips) He's never had bread in his life, only ate crackers and pretzels previously. We are about to attempt the introduction of a sandwhich to him. I strayed sorry- back to sugar, have you tried Xlitol? There is a website that you can purchas it in bulk from. Many health food stores and some dr's actually carry it. It's a one to one ratio to sugar. I'm hoping to have time this weekend to use it in some snack cooking to add back a small amount of sweet flavored treats such as ice cream. (made with vance's dairy free) Lynn Austin 3 yrs (blind with LCA and ASD, non-verbal) > Connie, > > Yes, I agree with everything you said. > > I think there is also a varied response to some treatments like the diet due > to varied levels of IMPLEMENTATION of the diet. Being TRULY GFCF means > none...NO products with wheat or casein. This is very hard, I think some > people try it, but it is hard to do well and so you see mixed results. > > Some people use the enzymes and just go ahead and eat wheat or dairy, and I > guess if your child CAN do that AND STILL make progress, then that is great. > We went very strictly on the GFCF diet and saw positive results immediately > and continuously. > > So if someone does the diet and does not see an affect, it could be that the > diet just has no benefit for that child, but I think the parent should > review in their mind, " Did we REALLY follow the diet, strictly and > religously? " I applaud you that you tried it again after getting test > results indicating a need to do so. > > Even though we have been very strictly following the GFCF diet, we are > finding it hard to go Sugar-Free. Our doctor has recently suggested we try > going sugar-free to see if there is improvement in some issues with both my > children but especially the one with Autism. We haven't gone TOTALLY > sugar-free, it IS hard. But in just REDUCING his sugar, we have seen some > positive improvement. So we are working towards the sugar-free. > > I agree with you that most of what you hear on the list is truth. The right > question to ask about what you hear on this list is NOT , " Is it true? " but > rather, " Will it work for my child? " > > For most of what we read on this list to NOT be true, it would mean that > MOST parents are either lying or greatly exaggerating about the progress > they are observing in their children. I don't believe either to be the > case. For my child, the change has been very dramatic, he went from being a > non-verbal child with head banging on the floor, foul, disgusting diapers > and a zombie like awareness- to an aware child capable of functioning in a > normal class of Kindergarteners. He is not yet recovered, but he is showing > promising signs that it is possible. I explain this for the purpose of > illustrating that the changes have been dramatic and DIRECTLY associated > with his treatment. It is not a case where it is just our bias as parents > and we are interpreting progress where none exists- WE HAVE TEST SCORES TO > PROVE IT!! > > The unfortunate reality is that as of now, medical science just doesn't have > a complete understanding of this condition and doctors can't do it all for > us. Successful Autism treatment requires an active, involved parent (which > I know we all are, I am just speaking generally) trying these therapies and > working WITH an interested doctor to find the RIGHT COMBINATION of therapies > to help each indivdual child. > > J. P. Reirdon > Webmaster > <http://www.featnt.org/> http://www.featnt.org > " Building a Bridge of Hope " > > Webmaster > <http://www.autismtreatment.info/> http://www.AutismTreatment.info/ > You CAN treat Autism!! > Get treatment tips for children with Autism, PDD and Aperger's Syndrome from > parents who have successfully helped their children. > > > Webmaster > http://www.StarThrowers.org/ <http://www.starthrowers.org/> > Fundraising for In-Home treatment programs > > > > > > what helps our kids? > > > There's been mention lately about taking with a grain of salt what many > parents of autistic kids are saying about what works to help their kids. Is > it this? Is it that? Many confused by the abundance of information. Let > me just say, that there isn't just ONE answer. But most of what you are > hearing on this list is based on truth. Should I try this or that. In > truth, the answer is that it takes doing many things at once to accomplish > an end goal. > > I had tried the gfcf diet a few years back when I first heard about it - but > I didn't see a lot of improvement. Not like many of the people had seen. > But when tests showed that my children did need to be on the diet, we were > back on it - this time using enzymes to go with it - and saw better results. > I also have them on Omega-3's and am chelating heavy metals out of their > bodies. And people are starting to see the results! And NO it is not just > because they have gotten older. Why do I know this? Because my daughter > who is affected didn't show improvements with age - it was AFTER we > implemented different interventions that improvement has come. We have also > done sound therapy and the last few months, horseback riding therapy. > > I no longer have them on meds to keep their moods under control!! They are > talking better, behave better and respond better. My one son, who was a > terror to wash his hair, doesn't mind it now. This year, at age 9!!, he > finally is in the big swimming pool, instead of staying in the baby pool - > we thought he would still be there at age 12! I also cover all of our > efforts with prayer! > > I went to a seminar last summer by Dr. Jeff Bradstreet and his colleagues. > They brought all of this together. They have seen the improvements using > these approaches. I know there are other things that I could probably do, > but right now, I'm comfortable with what I'm doing. I can only do so much. > > > I hope this helps someone. That's what it was meant to do. There is so > much more information for people new to this than when my kids were > diagnosed or when we were trying to find a diagnosis even. > > Blessings > Connie > > > Quote Link to comment Share on other sites More sharing options...
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