Guest guest Posted November 17, 2008 Report Share Posted November 17, 2008 Gee, I am no expert, but in my notes from a nutrionist with whom I consult the MTHFR gene means they do not detox well. [ ] Genetic testing Is anyone familiar with the MTHFR, DNA Analysis? It tests for two different mutations C677T and A1298C. My son's result found a mutation but only 1, the A1298C. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 Hi , Check out www.chromodisorder.org and you can sign up to network with other people and get information on the mutation/disorder. -Jenna > > Is anyone familiar with the MTHFR, DNA Analysis? It tests for two > different mutations C677T and A1298C. My son's result found a > mutation but only 1, the A1298C. > > Thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2009 Report Share Posted February 15, 2009 Because of my husband's illness, I haven't read carefully all the posts on this network, so forgive me if this has already been discussed. If you don't have symptoms, you may want to try to find a way to pay for the test yourself if you can also avoid having your insurance company find out about the diagnosis. I may be paranoid, but I would try all sorts of things to be anonymous. Elinor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2009 Report Share Posted February 15, 2009 Hi , People can also check with their doctors about payment. I go to the MDA-affiliated Muscle Disease clinic in my state, and the MDA paid the portion that my insurance did not cover. That was the only reason I agreed to get the testing, since there was no way I could pay out of pocket. Athena did originally bill me for $800 and I had to make some phone calls to the clinic and also to the MDA, but they finally took care of it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2010 Report Share Posted March 5, 2010 Hi- Yes- had the Genetic Testing done on our son. I find the entire world of Genetics to be so fascinating..... and I would highly recommend that anyone who is offered this testing have it done! My Son is almost 3-- we had the testing done prior to his 2nd birthday. We wanted this done when we found out that our Son had Hypotonia-- (we wanted to know why). We took our Son to a Neurologist-- who ordered an MRI of the Brain and the Genetic Testing. The MRI had a slight abnormality (mild PVL) The genetic results showed a chromosome deletion- in the area of 10q23.31. this means- the 10th chromosome, the q arm of this chromosome, and the 23.31 area. this is a very small deletion. When we found out that our Son had this deletion, the next step was that my husband and I were tested for the same deletion. It turns out that my husband had the exact same deletion. They then analyzed each of the genes that " were missing " because of the deletion. Most of these genes had already been studied, but 4 were not yet. Therefore, we were able to know about what " it could mean " for my hubby and son to be " missing " the known Genes. None of the known missing genes had any correlation to Cognitive or Physical Delays.... which was a relief. We did learn that " missing one of the Genes " can lead to a higher risk for Aneurysms for Adults. My 50 year old hubby immediately went to have an Echocardiogram done.... it was normal. We now know that my hubby is at risk for Aneurysms- and he will make sure he is checked regularly.... this in essence, can save his life! We will let our Son know about this when he is older. The Genetic testing DID NOT give us clear answers about WHY our almost 3 year old Son has delays.....BUT it DID clear up some confusion among his various doctors.... We had several Doctors in the SAME hospital system..... The Neurologist blamed our Son's delays on " Genetic issues " ..... and the Genetics people felt that the delays were Neurological in Nature. The testing helped to provide clarification. If you have any further questions.... let me know. Even more interesting, I found out about a FREE Research Study that is going on for the next 5 years at the Medical College of Georgia. The purpose of the Study is to look for Genetic Causes of Developmental Delays. The Study is free-- they will pay for you to have blood drawn locally, and they pay for the shipping of the blood to them. They also will run ALL tests for free...... What is really cool, is that they are comparing kids with similar deletions.... and looking at symptoms..... they are trying to find out what genes that have never been studied do. We will soon be participating in this..... we will be sending them blood from me, my hubby, my son, my " typical daughter " , and several members of my hubby's family. We are hoping that we will learn more about the " genes that were never studied " in our Son's deletion. I WOULD HIGHLY SUGGEST that all people on this site who have had Genetic Testing in the past for their child, with abnormal results, consider participation in this FREE Study! The testing becomes more advanced as time goes by.... you might find out something new! Let me know if any of you want the info.... I have it all saved on my computer.... and I can give you the phone numbers of who to contact. Your child must have already had Genetic Testing - with abnormal results to participate. Genetic testing is VERY expensive- this is a good way to get it done again-- with a more advanced test.... for free! You will be provided with the results! Take care- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2010 Report Share Posted March 5, 2010 Our son had a microarray analaysis test six months ago when he was 3.5 and the results did not reveal any abnormalities. Â From: CHRISTINA Shultz <candmsh@...> Subject: [ ] Genetic testing Date: Thursday, March 4, 2010, 8:00 PM Â Has anyone done the Micro DNA testing? In MT my kids get medicade because of their speech delays. My youngest daughter has it so bad (she will be 7 next month and can just say mom all the way threw) that the specialist that we see asked us to do this testing. You bet I was game. Just wanted to know if any of you have had this done and what the results were. Shultz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2010 Report Share Posted March 5, 2010 Do you have any contact information for the study? Thanks  From: <> Subject: Re: [ ] Genetic testing Date: Friday, March 5, 2010, 12:30 PM  Hi- Yes- had the Genetic Testing done on our son. I find the entire world of Genetics to be so fascinating. .... and I would highly recommend that anyone who is offered this testing have it done! My Son is almost 3-- we had the testing done prior to his 2nd birthday. We wanted this done when we found out that our Son had Hypotonia-- (we wanted to know why). We took our Son to a Neurologist- - who ordered an MRI of the Brain and the Genetic Testing. The MRI had a slight abnormality (mild PVL) The genetic results showed a chromosome deletion- in the area of 10q23.31. this means- the 10th chromosome, the q arm of this chromosome, and the 23.31 area. this is a very small deletion. When we found out that our Son had this deletion, the next step was that my husband and I were tested for the same deletion. It turns out that my husband had the exact same deletion. They then analyzed each of the genes that " were missing " because of the deletion. Most of these genes had already been studied, but 4 were not yet. Therefore, we were able to know about what " it could mean " for my hubby and son to be " missing " the known Genes. None of the known missing genes had any correlation to Cognitive or Physical Delays.... which was a relief. We did learn that " missing one of the Genes " can lead to a higher risk for Aneurysms for Adults. My 50 year old hubby immediately went to have an Echocardiogram done.... it was normal. We now know that my hubby is at risk for Aneurysms- and he will make sure he is checked regularly... . this in essence, can save his life! We will let our Son know about this when he is older. The Genetic testing DID NOT give us clear answers about WHY our almost 3 year old Son has delays.....BUT it DID clear up some confusion among his various doctors.... We had several Doctors in the SAME hospital system..... The Neurologist blamed our Son's delays on " Genetic issues " ..... and the Genetics people felt that the delays were Neurological in Nature. The testing helped to provide clarification. If you have any further questions... . let me know. Even more interesting, I found out about a FREE Research Study that is going on for the next 5 years at the Medical College of Georgia. The purpose of the Study is to look for Genetic Causes of Developmental Delays. The Study is free-- they will pay for you to have blood drawn locally, and they pay for the shipping of the blood to them. They also will run ALL tests for free...... What is really cool, is that they are comparing kids with similar deletions... . and looking at symptoms.... . they are trying to find out what genes that have never been studied do. We will soon be participating in this..... we will be sending them blood from me, my hubby, my son, my " typical daughter " , and several members of my hubby's family. We are hoping that we will learn more about the " genes that were never studied " in our Son's deletion. I WOULD HIGHLY SUGGEST that all people on this site who have had Genetic Testing in the past for their child, with abnormal results, consider participation in this FREE Study! The testing becomes more advanced as time goes by.... you might find out something new! Let me know if any of you want the info.... I have it all saved on my computer.... and I can give you the phone numbers of who to contact. Your child must have already had Genetic Testing - with abnormal results to participate. Genetic testing is VERY expensive- this is a good way to get it done again-- with a more advanced test.... for free! You will be provided with the results! Take care- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2010 Report Share Posted March 5, 2010 Yes I would love that info. I feel that if my family can help others then I am for it Shultz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2010 Report Share Posted March 5, 2010 We had the microarray DNA test done... came back completely normal... my 4 year old son has ASD and verbal apraxia, but nothing that is due to anything genetic according to the test. We did the test b/c it helped to rule out some things so we didn't have to worry about those anymore... it's all good information and anything you find out gives you power... if you can stand having your daughter get a blood draw (not so fun for kids), and a wait of about 3 weeks or so, it's all worth it. Tatyana [ ] Genetic testing Has anyone done the Micro DNA testing? In MT my kids get medicade because of their speech delays. My youngest daughter has it so bad (she will be 7 next month and can just say mom all the way threw) that the specialist that we see asked us to do this testing. You bet I was game. Just wanted to know if any of you have had this done and what the results were. Shultz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2010 Report Share Posted March 5, 2010 I would like the contact information as well. We just had a second microray done ( the first one when my daughter was 1 1/2 came back normal) and it picked up extra matter in my daughters x chromosone. We have an appointment with the Geneticist in April to find out what this is and what this means. Emory genetics now want myself and my husband to get tested but unless they are going to pay for it we will not it. We already pay 2500.00 per month out of pocket just for our daughters therapies. We can't afford to find out why we need to work on how to overcome. It would be great if we could get info on this study. Thanks ________________________________ From: Not Available <pawprntz4me@...> Sent: Fri, March 5, 2010 2:45:13 PM Subject: Re: [ ] Genetic testing  Do you have any contact information for the study? Thanks  From: aol (DOT) com <aol (DOT) com> Subject: Re: [childrensapraxiane t] Genetic testing @groups. com Date: Friday, March 5, 2010, 12:30 PM  Hi- Yes- had the Genetic Testing done on our son. I find the entire world of Genetics to be so fascinating. .... and I would highly recommend that anyone who is offered this testing have it done! My Son is almost 3-- we had the testing done prior to his 2nd birthday. We wanted this done when we found out that our Son had Hypotonia-- (we wanted to know why). We took our Son to a Neurologist- - who ordered an MRI of the Brain and the Genetic Testing. The MRI had a slight abnormality (mild PVL) The genetic results showed a chromosome deletion- in the area of 10q23.31. this means- the 10th chromosome, the q arm of this chromosome, and the 23.31 area. this is a very small deletion. When we found out that our Son had this deletion, the next step was that my husband and I were tested for the same deletion. It turns out that my husband had the exact same deletion. They then analyzed each of the genes that " were missing " because of the deletion. Most of these genes had already been studied, but 4 were not yet. Therefore, we were able to know about what " it could mean " for my hubby and son to be " missing " the known Genes. None of the known missing genes had any correlation to Cognitive or Physical Delays.... which was a relief. We did learn that " missing one of the Genes " can lead to a higher risk for Aneurysms for Adults. My 50 year old hubby immediately went to have an Echocardiogram done.... it was normal. We now know that my hubby is at risk for Aneurysms- and he will make sure he is checked regularly... . this in essence, can save his life! We will let our Son know about this when he is older. The Genetic testing DID NOT give us clear answers about WHY our almost 3 year old Son has delays.....BUT it DID clear up some confusion among his various doctors.... We had several Doctors in the SAME hospital system..... The Neurologist blamed our Son's delays on " Genetic issues " ..... and the Genetics people felt that the delays were Neurological in Nature. The testing helped to provide clarification. If you have any further questions... . let me know. Even more interesting, I found out about a FREE Research Study that is going on for the next 5 years at the Medical College of Georgia. The purpose of the Study is to look for Genetic Causes of Developmental Delays. The Study is free-- they will pay for you to have blood drawn locally, and they pay for the shipping of the blood to them. They also will run ALL tests for free...... What is really cool, is that they are comparing kids with similar deletions... . and looking at symptoms.... . they are trying to find out what genes that have never been studied do. We will soon be participating in this..... we will be sending them blood from me, my hubby, my son, my " typical daughter " , and several members of my hubby's family. We are hoping that we will learn more about the " genes that were never studied " in our Son's deletion. I WOULD HIGHLY SUGGEST that all people on this site who have had Genetic Testing in the past for their child, with abnormal results, consider participation in this FREE Study! The testing becomes more advanced as time goes by.... you might find out something new! Let me know if any of you want the info.... I have it all saved on my computer.... and I can give you the phone numbers of who to contact. Your child must have already had Genetic Testing - with abnormal results to participate. Genetic testing is VERY expensive- this is a good way to get it done again-- with a more advanced test.... for free! You will be provided with the results! Take care- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2010 Report Share Posted March 5, 2010 Thanks for sharing this info. I'm interested to participate in this study. Who do we contact? From: [mailto: ] On Behalf Of Sent: Friday, March 05, 2010 12:31 PM Subject: Re: [ ] Genetic testing Hi- Yes- had the Genetic Testing done on our son. I find the entire world of Genetics to be so fascinating..... and I would highly recommend that anyone who is offered this testing have it done! My Son is almost 3-- we had the testing done prior to his 2nd birthday. We wanted this done when we found out that our Son had Hypotonia-- (we wanted to know why). We took our Son to a Neurologist-- who ordered an MRI of the Brain and the Genetic Testing. The MRI had a slight abnormality (mild PVL) The genetic results showed a chromosome deletion- in the area of 10q23.31. this means- the 10th chromosome, the q arm of this chromosome, and the 23.31 area. this is a very small deletion. When we found out that our Son had this deletion, the next step was that my husband and I were tested for the same deletion. It turns out that my husband had the exact same deletion. They then analyzed each of the genes that " were missing " because of the deletion. Most of these genes had already been studied, but 4 were not yet. Therefore, we were able to know about what " it could mean " for my hubby and son to be " missing " the known Genes. None of the known missing genes had any correlation to Cognitive or Physical Delays.... which was a relief. We did learn that " missing one of the Genes " can lead to a higher risk for Aneurysms for Adults. My 50 year old hubby immediately went to have an Echocardiogram done.... it was normal. We now know that my hubby is at risk for Aneurysms- and he will make sure he is checked regularly.... this in essence, can save his life! We will let our Son know about this when he is older. The Genetic testing DID NOT give us clear answers about WHY our almost 3 year old Son has delays.....BUT it DID clear up some confusion among his various doctors.... We had several Doctors in the SAME hospital system..... The Neurologist blamed our Son's delays on " Genetic issues " ..... and the Genetics people felt that the delays were Neurological in Nature. The testing helped to provide clarification. If you have any further questions.... let me know. Even more interesting, I found out about a FREE Research Study that is going on for the next 5 years at the Medical College of Georgia. The purpose of the Study is to look for Genetic Causes of Developmental Delays. The Study is free-- they will pay for you to have blood drawn locally, and they pay for the shipping of the blood to them. They also will run ALL tests for free...... What is really cool, is that they are comparing kids with similar deletions.... and looking at symptoms..... they are trying to find out what genes that have never been studied do. We will soon be participating in this..... we will be sending them blood from me, my hubby, my son, my " typical daughter " , and several members of my hubby's family. We are hoping that we will learn more about the " genes that were never studied " in our Son's deletion. I WOULD HIGHLY SUGGEST that all people on this site who have had Genetic Testing in the past for their child, with abnormal results, consider participation in this FREE Study! The testing becomes more advanced as time goes by.... you might find out something new! Let me know if any of you want the info.... I have it all saved on my computer.... and I can give you the phone numbers of who to contact. Your child must have already had Genetic Testing - with abnormal results to participate. Genetic testing is VERY expensive- this is a good way to get it done again-- with a more advanced test.... for free! You will be provided with the results! Take care- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2010 Report Share Posted April 22, 2010 > > I have been reading about a doctor in Maine her name is Amy Yasko she > does genetic testing, has anyone in the group done any of her test kits? > > > > > Lori > > yes my daughter had this done for my grandson() before doing the protocol. Carole________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2010 Report Share Posted April 22, 2010 Carole- We, too, had the Amy Yasko testing done. What did you and your doctor think and do with the results of the test? Does anyone know if Dr G, or Dr or the NNY Center does anything with the Amy Yasko genetic testing results?! Thank You!! - Sent on the Sprint® Now Network from my BlackBerry® Re: Genetic Testing > > I have been reading about a doctor in Maine her name is Amy Yasko she > does genetic testing, has anyone in the group done any of her test kits? > > > > > Lori > > yes my daughter had this done for my grandson() before doing the protocol. Carole________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 > > > > I have been reading about a doctor in Maine her name is Amy Yasko she > > does genetic testing, has anyone in the group done any of her test kits? > > > > > > > > > > Lori > > > > yes my daughter had this done for my grandson() before doing the protocol. > Carole________________________________ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2010 Report Share Posted April 24, 2010 Yes but Dr. G doesn't use them nor believe in them. At least, not the last time we spoke about it which was a couple years ago. Cheryl ~http://www.gryffins-tail.blogspot.com ~@midian42~ On Apr 22, 2010, at 10:07 AM, Lori wrote: > I have been reading about a doctor in Maine her name is Amy Yasko she > does genetic testing, has anyone in the group done any of her test kits? > > Lori > > ________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2010 Report Share Posted April 25, 2010 A doctor who does not believe in the value of gentic studies and genetic testing does not seem like a very good doctor to me. Of course, that is *my* opinion, but genetics play a major role in the outcome of our own selves. What we choose to do with our genetic health history, enviromentally, can change the outcome of a person. > > > I have been reading about a doctor in Maine her name is Amy Yasko she > > does genetic testing, has anyone in the group done any of her test kits? > > > > Lori > > > > ________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2010 Report Share Posted April 25, 2010 Has anyone else had the Amy Yasko genetic testing or any other genetic testing done......AND, had Dr G, or Dr , or some other doctor actually read and use the results??! - Sent on the Sprint® Now Network from my BlackBerry® Re: Genetic Testing A doctor who does not believe in the value of gentic studies and genetic testing does not seem like a very good doctor to me. Of course, that is *my* opinion, but genetics play a major role in the outcome of our own selves. What we choose to do with our genetic health history, enviromentally, can change the outcome of a person. > > > I have been reading about a doctor in Maine her name is Amy Yasko she > > does genetic testing, has anyone in the group done any of her test kits? > > > > Lori > > > >________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2010 Report Share Posted April 26, 2010 Hi , I haven¹t discussed Amy Yasko with Dr. G., but have discussed genetics with him. If there is a clear genetic link to something (i.e. Down Syndrome), he¹s not going to deny that. He feels that autism¹s secrets more likely lie within epigenetics (triggers switching genes on and off) rather than regular genetics. And then there¹s the whole retroviral issue. My guess is that he does not feel that the science is ³hard² enough behind what she is doing. He is constantly talking to researchers, etc. seeking out the the best science that can apply to our kids. He was talking with the Whittemore Institute before they ever published. I honestly don¹t know how he finds these people. I know Dr. Yasko uses chelation, which Dr. Goldberg is very opposed to. He feels that chelation can cause permanent damage. His opinion comes both from studies and his experience in working with children in his care who have previously been chelated. He says they just don¹t improve as well. He feels so strongly about it that he has said he won¹t see a child who is being chelated. It just comes down to the fact that these two doctors have a very different view of things. There are a couple of things on her site that made me uncomfortable when skimming through it. I don¹t like that you have to buy things directly from her store. I realize that the products she recommends may not be available other places, but it still bothers me. She comments that ³Your genetics will never change, so the results of this test will be applicable throughout your entire life.² That¹s just not true, because throughout our lifetimes there are epigenetic switches turning on and off. She does discuss epigenetics somewhere else on her site, so I don¹t know why she makes that statement. I mean, yes, our genes don¹t change, but the activation of those genes does change and therefore their functions change. I¹m more comfortable with Dr. Goldberg. Others are more comfortable with Dr. Yasko. I don¹t fault those who take their children to her... we all do what we think is best for our kids (most would give everything we have to make them well)... and I think most of us pray for all of the children every day. HTH, Caroline G. From: agirlnamedsuess21 <agirlnamedsuess@...> Reply-< > Date: Sun, 25 Apr 2010 16:39:07 +0000 < > Subject: Re: Genetic Testing A doctor who does not believe in the value of gentic studies and genetic testing does not seem like a very good doctor to me. Of course, that is *my* opinion, but genetics play a major role in the outcome of our own selves. What we choose to do with our genetic health history, enviromentally, can change the outcome of a person. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2010 Report Share Posted April 26, 2010 So true. My brother in law died recently – aged 50 from Chronic, Myeloid Leukemia (the rare “Pennsylvania” version) an immune related dieased caused by a genetic switch that goes on in a particular set of Chromosomes. It took two years from diagnosis … his last major accomplishment was scuba diving on the Great Barrier Reef at the end of January. Thanks for your post Caroline, Regards, _____ From: [mailto: ] On Behalf Of Caroline Glover Sent: Monday, April 26, 2010 7:28 AM Subject: Re: Re: Genetic Testing Hi , I haven¹t discussed Amy Yasko with Dr. G., but have discussed genetics with him. If there is a clear genetic link to something (i.e. Down Syndrome), he¹s not going to deny that. He feels that autism¹s secrets more likely lie within epigenetics (triggers switching genes on and off) rather than regular genetics. And then there¹s the whole retroviral issue. My guess is that he does not feel that the science is ³hard² enough behind what she is doing. He is constantly talking to researchers, etc. seeking out the the best science that can apply to our kids. He was talking with the Whittemore Institute before they ever published. I honestly don¹t know how he finds these people. I know Dr. Yasko uses chelation, which Dr. Goldberg is very opposed to. He feels that chelation can cause permanent damage. His opinion comes both from studies and his experience in working with children in his care who have previously been chelated. He says they just don¹t improve as well. He feels so strongly about it that he has said he won¹t see a child who is being chelated. It just comes down to the fact that these two doctors have a very different view of things. There are a couple of things on her site that made me uncomfortable when skimming through it. I don¹t like that you have to buy things directly from her store. I realize that the products she recommends may not be available other places, but it still bothers me. She comments that ³Your genetics will never change, so the results of this test will be applicable throughout your entire life.² That¹s just not true, because throughout our lifetimes there are epigenetic switches turning on and off. She does discuss epigenetics somewhere else on her site, so I don¹t know why she makes that statement. I mean, yes, our genes don¹t change, but the activation of those genes does change and therefore their functions change. I¹m more comfortable with Dr. Goldberg. Others are more comfortable with Dr. Yasko. I don¹t fault those who take their children to her... we all do what we think is best for our kids (most would give everything we have to make them well)... and I think most of us pray for all of the children every day. HTH, Caroline G. From: agirlnamedsuess21 <agirlnamedsuess@ <mailto:agirlnamedsuess%40hotmail.com> hotmail.com> Reply-<groups (DOT) <mailto:%40> com> Date: Sun, 25 Apr 2010 16:39:07 +0000 <groups (DOT) <mailto:%40> com> Subject: Re: Genetic Testing A doctor who does not believe in the value of gentic studies and genetic testing does not seem like a very good doctor to me. Of course, that is *my* opinion, but genetics play a major role in the outcome of our own selves. What we choose to do with our genetic health history, enviromentally, can change the outcome of a person. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2010 Report Share Posted April 27, 2010 , I¹m terribly sorry to hear about your brother in law. I suppose we were born about 100 years too soon, because science will find how to switch those genes back someday. They are in the early stages of it now (I¹m sure you know more about that than I). My two boys have both now been diagnosed with a retinal dystrophy and I suspect some sort of epigenetic switch there as well. It amazes me that our bodies work as well as they do... there are so many things that can go wrong every moment. I try not to think about it too much. Best wishes, Caroline From: Crosss <crosswilsons@...> Reply-< > Date: Mon, 26 Apr 2010 20:29:36 -0700 < > Subject: RE: Re: Genetic Testing So true. My brother in law died recently aged 50 from Chronic, Myeloid Leukemia (the rare ³Pennsylvania² version) an immune related dieased caused by a genetic switch that goes on in a particular set of Chromosomes. It took two years from diagnosis Š his last major accomplishment was scuba diving on the Great Barrier Reef at the end of January. Thanks for your post Caroline, Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2010 Report Share Posted April 27, 2010 I do believe in switching genes on and off because my son with two different cell lines switches every day all day. (No specific trigger, but just because he has two different cell lines.) I totally disagree with *you are stuck with your genetics* because one can permanently change their DNA (as a matter of fact, that is one way DNA permanently changes in a family geneline sometimes). For instance, if heart disease runs in a family, which therefore predisposes everyone in that family to having a preponderance towards having heart disease, especially with the correct triggers in their lives. BUT if one clan in those generations decides to live outside the box, with different diet/exercise/ and lifestyle all the way around, they have permanently changed the DNA for themselves and ALL descendents from them. So, I disagree that you are stuck with the DNA you are born with. In addition, when speaking of somene with two cell lines, like my son, the numbers always change. As long as he remains in good health, there will be a preponderance towards his normal cell line. In essence, he could reduce his trisomic line by huge numbers depending on environmental factors. (That is one good thing he has going for him, since we have managed to keep him well.) DNA does and can change---for the better OR for the worse. > > Hi , > > I haven¹t discussed Amy Yasko with Dr. G., but have discussed genetics with > him. > > If there is a clear genetic link to something (i.e. Down Syndrome), he¹s not > going to deny that. > > He feels that autism¹s secrets more likely lie within epigenetics (triggers > switching genes on and off) rather than regular genetics. And then there¹s > the whole retroviral issue. > > My guess is that he does not feel that the science is ³hard² enough behind > what she is doing. > > He is constantly talking to researchers, etc. seeking out the the best > science that can apply to our kids. He was talking with the Whittemore > Institute before they ever published. I honestly don¹t know how he > finds these people. > > I know Dr. Yasko uses chelation, which Dr. Goldberg is very opposed to. He > feels that chelation can cause permanent damage. His opinion comes both > from studies and his experience in working with children in his care who > have previously been chelated. He says they just don¹t improve as well. He > feels so strongly about it that he has said he won¹t see a child who is > being chelated. > > It just comes down to the fact that these two doctors have a very different > view of things. > > There are a couple of things on her site that made me uncomfortable when > skimming through it. > > I don¹t like that you have to buy things directly from her store. I realize > that the products she recommends may not be available other places, but it > still bothers me. > > She comments that ³Your genetics will never change, so the results of this > test will be applicable throughout your entire life.² That¹s just not true, > because throughout our lifetimes there are epigenetic switches turning on > and off. She does discuss epigenetics somewhere else on her site, so I > don¹t know why she makes that statement. I mean, yes, our genes don¹t > change, but the activation of those genes does change and therefore their > functions change. > > I¹m more comfortable with Dr. Goldberg. Others are more comfortable with > Dr. Yasko. I don¹t fault those who take their children to her... we all do > what we think is best for our kids (most would give everything we have to > make them well)... and I think most of us pray for all of the children every > day. > > HTH, > Caroline G. > > > From: agirlnamedsuess21 <agirlnamedsuess@...> > Reply-< > > Date: Sun, 25 Apr 2010 16:39:07 +0000 > < > > Subject: Re: Genetic Testing > > > A doctor who does not believe in the value of gentic studies and genetic > testing does not seem like a very good doctor to me. > Of course, that is *my* opinion, but genetics play a major role in the > outcome of our own selves. What we choose to do with our genetic health > history, enviromentally, can change the outcome of a person. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2010 Report Share Posted April 27, 2010 It sounds like you are talking about epigenetics. Kristy Nardini TazziniTM Stainless Steel Bottles www.tazzini.com kristy@... Phone: 858.243.1929 Fax: 858.724.1418 P Please consider the environment before printing this email. From: [mailto: ] On Behalf Of agirlnamedsuess21 Sent: Tuesday, April 27, 2010 7:21 PM Subject: Re: Genetic Testing I do believe in switching genes on and off because my son with two different cell lines switches every day all day. (No specific trigger, but just because he has two different cell lines.) I totally disagree with *you are stuck with your genetics* because one can permanently change their DNA (as a matter of fact, that is one way DNA permanently changes in a family geneline sometimes). For instance, if heart disease runs in a family, which therefore predisposes everyone in that family to having a preponderance towards having heart disease, especially with the correct triggers in their lives. BUT if one clan in those generations decides to live outside the box, with different diet/exercise/ and lifestyle all the way around, they have permanently changed the DNA for themselves and ALL descendents from them. So, I disagree that you are stuck with the DNA you are born with. In addition, when speaking of somene with two cell lines, like my son, the numbers always change. As long as he remains in good health, there will be a preponderance towards his normal cell line. In essence, he could reduce his trisomic line by huge numbers depending on environmental factors. (That is one good thing he has going for him, since we have managed to keep him well.) DNA does and can change---for the better OR for the worse. > > Hi , > > I haven¹t discussed Amy Yasko with Dr. G., but have discussed genetics with > him. > > If there is a clear genetic link to something (i.e. Down Syndrome), he¹s not > going to deny that. > > He feels that autism¹s secrets more likely lie within epigenetics (triggers > switching genes on and off) rather than regular genetics. And then there¹s > the whole retroviral issue. > > My guess is that he does not feel that the science is ³hard² enough behind > what she is doing. > > He is constantly talking to researchers, etc. seeking out the the best > science that can apply to our kids. He was talking with the Whittemore > Institute before they ever published. I honestly don¹t know how he > finds these people. > > I know Dr. Yasko uses chelation, which Dr. Goldberg is very opposed to. He > feels that chelation can cause permanent damage. His opinion comes both > from studies and his experience in working with children in his care who > have previously been chelated. He says they just don¹t improve as well. He > feels so strongly about it that he has said he won¹t see a child who is > being chelated. > > It just comes down to the fact that these two doctors have a very different > view of things. > > There are a couple of things on her site that made me uncomfortable when > skimming through it. > > I don¹t like that you have to buy things directly from her store. I realize > that the products she recommends may not be available other places, but it > still bothers me. > > She comments that ³Your genetics will never change, so the results of this > test will be applicable throughout your entire life.² That¹s just not true, > because throughout our lifetimes there are epigenetic switches turning on > and off. She does discuss epigenetics somewhere else on her site, so I > don¹t know why she makes that statement. I mean, yes, our genes don¹t > change, but the activation of those genes does change and therefore their > functions change. > > I¹m more comfortable with Dr. Goldberg. Others are more comfortable with > Dr. Yasko. I don¹t fault those who take their children to her... we all do > what we think is best for our kids (most would give everything we have to > make them well)... and I think most of us pray for all of the children every > day. > > HTH, > Caroline G. > > > From: agirlnamedsuess21 <agirlnamedsuess@...> > Reply-< <mailto:%40> > > Date: Sun, 25 Apr 2010 16:39:07 +0000 > < <mailto:%40> > > Subject: Re: Genetic Testing > > > A doctor who does not believe in the value of gentic studies and genetic > testing does not seem like a very good doctor to me. > Of course, that is *my* opinion, but genetics play a major role in the > outcome of our own selves. What we choose to do with our genetic health > history, enviromentally, can change the outcome of a person. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2010 Report Share Posted April 30, 2010 The epigenetics info is excellent and I certainly support Dr Goldberg in his view as I feel it describes what occurred for two of my children who do not have ASD but language impairment. I feel very frustrated by the overwhelming ignorance directed towards parents from some professionals who make statements (and commit such views to paper with damaging consequences) about linkage 'obviously' being genetic! The linkage is not proven and although genetic research is ongoing it is still sold to parents as being proven. I recently had the misfortune to expose my young son to such professional ignorance and without any reference to evidence her opening statement to me post assessment was 'well of course it is genetic' and all on the basis of a one hour relationship and her knowing that his older brother had a language impairment. Not surprisingly her subsequent report included negatives which don't apply i.e. working memory/phonemic awareness and more besides and what had me hopping mad was the fact that these areas are actually strengths for him as verified by other standardised testing and the fact that he is an age appropriate reader but of course as I wanted an unbiased view I did not supply them in advance so she was free to go with her bias.She also claimed his school appeared to be meeting his need despite seeing no evidence or offering evidence to support this view and she concluded with a recommendation for intensive SLT when he is actually in a school (in her view meeting his need) where SLT is integral to the school day! Imagine all that on the basis of 'proven genetics'! The medical world is geared to genetics and of course it is crucial to gain a better understanding of the underlying causes of neurological conditions but contain it where it belongs until it is proven and can provide a constructive use for our children. In a message dated 26/04/2010 15:38:20 GMT Daylight Time, sfglover@... writes: Hi , I haven¹t discussed Amy Yasko with Dr. G., but have discussed genetics with him. If there is a clear genetic link to something (i.e. Down Syndrome), he¹s not going to deny that. He feels that autism¹s secrets more likely lie within epigenetics (triggers switching genes on and off) rather than regular genetics. And then there¹s the whole retroviral issue. My guess is that he does not feel that the science is ³hard² enough behind what she is doing. He is constantly talking to researchers, etc. seeking out the the best science that can apply to our kids. He was talking with the Whittemore Institute before they ever published. I honestly don¹t know how he finds these people. I know Dr. Yasko uses chelation, which Dr. Goldberg is very opposed to. He feels that chelation can cause permanent damage. His opinion comes both from studies and his experience in working with children in his care who have previously been chelated. He says they just don¹t improve as well. He feels so strongly about it that he has said he won¹t see a child who is being chelated. It just comes down to the fact that these two doctors have a very different view of things. There are a couple of things on her site that made me uncomfortable when skimming through it. I don¹t like that you have to buy things directly from her store. I realize that the products she recommends may not be available other places, but it still bothers me. She comments that ³Your genetics will never change, so the results of this test will be applicable throughout your entire life.² That¹s just not true, because throughout our lifetimes there are epigenetic switches turning on and off. She does discuss epigenetics somewhere else on her site, so I don¹t know why she makes that statement. I mean, yes, our genes don¹t change, but the activation of those genes does change and therefore their functions change. I¹m more comfortable with Dr. Goldberg. Others are more comfortable with Dr. Yasko. I don¹t fault those who take their children to her... we all do what we think is best for our kids (most would give everything we have to make them well)... and I think most of us pray for all of the children every day. HTH, Caroline G. From: agirlnamedsuess21 <_agirlnamedsuess@agirlnameds_ (mailto:agirlnamedsuess@...) > Reply- <_@..._ (mailto: ) > Date: Sun, 25 Apr 2010 16:39:07 +0000 <_@..._ (mailto: ) > Subject: Re: Genetic Testing A doctor who does not believe in the value of gentic studies and genetic testing does not seem like a very good doctor to me. Of course, that is *my* opinion, but genetics play a major role in the outcome of our own selves. What we choose to do with our genetic health history, enviromentally, can change the outcome of a person. [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2010 Report Share Posted May 9, 2010 Does anyone have a list of genetics testing that should be done on asd kids? It would be helpful to know what exactly we are treating (or not treating) before giving them drugs to treat things that may or may not be there. We need to be educated and rule out certain things in children (or adults) with ASD in order to properly treat them. Re: [sPAM] Re: Re: Genetic Testing Genetics is important please take in consideration the 10-20% of children considered autistic but having Phelan-McDermid Syndrome (22q13 deletion).This is strictly genetic. Ami Re: Genetic Testing A doctor who does not believe in the value of gentic studies and genetic testing does not seem like a very good doctor to me. Of course, that is *my* opinion, but genetics play a major role in the outcome of our own selves. What we choose to do with our genetic health history, enviromentally, can change the outcome of a person. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2010 Report Share Posted May 13, 2010 Look for a geneticist in your area. Do you have a neurologist? Ours is who referred us to our geneticist. My advice is to have as much paperwork for past evals and doctor’s visits as possible so they have a lot to go on. I would suggested one of the more sensitive newer tests. My son came back ok on the first older test but they found his duplication with the microarray test. Good luck! From: [mailto: ] On Behalf Of roopa madhu Sent: Thursday, May 13, 2010 12:33 PM Subject: [ ] Genetic testing Hello, I want to do genetic testing for my son, I am looking for any information on where to get this done, and should we ask any specific questions or concerns with the test? thanks, RP ________________________________ From: sandy lehmann <mommie2chris@... <mailto:mommie2chris%40.ca> > <mailto: %40> Sent: Thu, May 13, 2010 8:22:46 AM Subject: Re: [ ] Re: flying with NV aren't those great! it mixes way better than my blender ever did. I just bring a baggie with NV and a small amount of hot chocolate mix (only use a teaspoon of that) and make his " hot chocolate " that way. I put a tsp of hot chocolate mix, hot water to blend, add mostly milk, then add the NV and blend away. works like a charm. ________________________________ From: liralendoncov <liralendoncov@... <mailto:liralendoncov%40> > <mailto: %40> Sent: Wed, May 12, 2010 9:03:45 PM Subject: [ ] Re: flying with NV I have one of those IKEA milk frother blender and I love it. So that is going. > > we're flying to NY for a wedding. Anyone have any tips about traveling with NV and what is the best way to pack it? > Liralen > > PS I wasn't going to take it, so I didn't give it to him one day to see how it went. He woke up at 2:30AM and never went back to sleep. You can believe he got NV for breakfast!! > L > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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