Guest guest Posted September 18, 1999 Report Share Posted September 18, 1999 Dear Jo, I'm very sorry that you had such a frustrating time. How is your daughter doing now? Have you made any more progress? While I think that a dysfunctional immune system is the root cause for the problems of most of these kids I don't think that we have all of the answers yet. In every disease process that I am familiar with there are always a percentage of people who will fail the treatment that benefits the majority. I took my daughter to Dr. Rapp who said that would be very easy to get on track and while she did improve she never reached the level that Dr. Rapp thought she would. I still respect Dr. Rapp and the fact that her approach has helped many people. My personal opinion is that there are some children that have a somewhat different genetic make up. That is from my work with 's Syndrome for a number of years and, sorry, I cannot give you an article to read! Kathy R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 1999 Report Share Posted September 18, 1999 Mr Dugua: Please look up the original DAN! document written in 1995. You will see that the original DAN! protocol refers to autoimmunity in autism and recommends several tests and treatments. DAN! has always been " on-board " . I got in on this thread because someone was interested in going to the DAN! Conference and Dr. Goldberg did not agree with the approach so they decided not to go. My point here is that Dr. Goldberg criticizes DAN! and all his points can be applied right back at him and his approach. I believe Dr. G's approach has merit. That is why I subscribe to this list. My daughter was in his care for two years. I have had many hours of phone conversations with him. My daughter was on Nizoral for 9 months and Diflucan for 7 months. My daughter never had a candida problem. None of her testing ever showed a candida problem. He told me all kids with a dysregulated immune system have a candida problem. She was on zovirax for 8 months then switched to valtrex for 9 months. Her HHV6 tires went from 1:120 to 1:640. This is also after the kutapressin was added. When we started with Dr. G my daughter had reactions to 2 foods. Her eosinophils were 1.2% When we finished she was allergic to 12 foods. Her eosinophils were 4.5% She ate everything when we started with him. When we finished she was eating only a few items. The SSRIs were a disaster in our case. He kept promising me that when we got everything adjusted she would be " normal " . He kept pushing the " normal " as opposed to what the DAN! docs could do for her. Her neuroSPECT was one of the most severe he had ever seen, and this was after being in his care for 13 months. This is something else I would like to let you know, Mr. Dugua. Dr. Goldberg told me that Carmen was one of the more difficult kids he was working with. He told us to come out to LA for a neuroSPECT in December 1997. He flew out there from Miami. He took a look at her and said she was a bright eyed kid and a neuroSPECT was not necessary. He told us we should spend the time seeing Fosnot. We stayed 4 more days to see Dr. Fosnot. It was a huge expense. I still owe Dr. Fosnot money. Dr. Goldberg told me she was the best SLP he had seen and she had a different approach. Dr. Fosnot's approach was no different that the approach we had been taking since 1995. The idea that what Fosnot does is unique is unfair to the parents that spend thousands of dollars to fly to LA to see her. I got a hold of a transcript of a presentation Dr. G. made in North Carolina. In it he discusses my daughter's visit to see Dr. Fosnot. His spin of what happened is inaccurate. It was when I read that that I decided he would no longer be my daughter's physician. I was not impressed with Fosnot, and Dr. Goldberg used his interpretation of our experience with her to promote Dr. Fosnot. He told us he knew he could reach Carmen because she was so bright eyed. He told us he has never lost a bright eyed kid. I kept asking him if I should take her to an immunologist. He kept saying not yet. Let me remind you that I live in Miami - Klimas is right here. He kept telling me not yet. Well, if this is an autoimmune disease, why should I wait to go to an immunologist? I finally took her to an immunologist that works with autistic kids. He was amazed that I found one. See, this is what kills me. He feels he is the only one doing this, and it has been going on for years. He told us the earlier a kid came to him the better. We started with him when Carmen was 3. She is now 6. While in his care her home program was directed by Lovaas. The Lovaas Institute dropped us after 18 months because of lack of progress. My daughter's greatest progress happened in August 1998 - October 1998 when we took her off valtrex and kutapressin and started doing what the immunologist recommended. He kept pointing at her HHV6 tires. Did you know that HHV6 tires can be elevated not because of HHV6 but because of another infection? He kept stressing that HHV6 was the culprit. However, when we would look at her elevated measles and rubella tires he would tell me those numbers don't mean anything. He treats the HHV6 with high doses of acyclovir. There are no papers proving acyclovir is effective against HHV6. There are no papers showing high doses of acyclovir are safe in pediatrics. And just because Dr. G thinks Kutapressin is safe does not mean that it is. I believe there is a chance in some of these kids with the hyperactive immune systems, that injecting a child repeated with pig liver can cause them to build up antibodies against the medication. My daughter's eosinophils went up on Kutapressin - steadily. I asked Dr. G if she was reacting to the kutapressin. His response was to assure me she was not. How can he assure me she was not. He would make negative comments about Sudhir Gupta who has been working in autoimmunity in autism for several years. He would discount all the work by Andy Wakefield. If you would really see the research Wakefield has done you would see this is hard to discount. Look, I don't know who did what at DAN!. I have never heard a DAN! doc say anything negative about Goldberg, but I have heard Goldberg spit venom about DAN! Again, I started at this because a parent wanted to learn more by attending the DAN! and Goldberg did not agree. I get concerned when parent think Goldberg is the only game in town. Thanks for your time. Jo Goldberg/Kane/DAN > > From: " Montgomery " <mont@...> > > Hi all, > > My son is a Goldberg pt. Goldberg has made it clear that he does not jive > with the DAN docs. He has a different opinion. I trust him. I was > planning to attend the DAN conference, but have since changed my mind, as he > does not agree with what all they are saying. Anyone else in the same boat? > > Also, I want to implement some of Dr. Kane's ideas, although I have > not taken my son to see her. I have just read some of her stuff. Has any > Goldberg pts also tried the Kane approach with success?? > > Trina > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 1999 Report Share Posted September 18, 1999 All of the differences in these children is what needs to be worked out. Hopefully the trials will accomplish that. My children who have the same genetics, have shown different immune abnormalities. We worked with an environmental allergist for a couple of years. My older son had high eosinophils, my younger son did not. The shots were a big help for my older son as far as recurrent illness. My younger sons illness progressed in spite of everything we were doing. My older son although no longer getting sick all the time, still was having some brain dysfunction, although his eosinophils are no longer elevated. He is now on antiviral and antifungal and his brain is working better. If we can get the immune modulators, hopefully we won't have to work so much to figure out what underlying problems are causing the dysfunction. Hope things go well for you in the future. Take Care, Cheryl Goldberg/Kane/DAN > > > > From: " Montgomery " <mont@...> > > > > Hi all, > > > > My son is a Goldberg pt. Goldberg has made it clear that he does not jive > > with the DAN docs. He has a different opinion. I trust him. I was > > planning to attend the DAN conference, but have since changed my mind, as > he > > does not agree with what all they are saying. Anyone else in the same > boat? > > > > Also, I want to implement some of Dr. Kane's ideas, although I > have > > not taken my son to see her. I have just read some of her stuff. Has > any > > Goldberg pts also tried the Kane approach with success?? > > > > Trina > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 1999 Report Share Posted September 18, 1999 Jo, " Autoimmunity " and " immune dysfunction/dysregulation " have vastly different meanings. Specifically, autoimmunity refers to a state in which the immune system attacks that which it should recognize as " self " - illnesses such as lupus, and even diabetes in which antibodies attack and destroy your own pancreas beta (insulin producing) cells. The danger of creating an autoimmune condition in which the body might become sensitized to it's own secretin is one on the reason several doctors, not just Dr. G., have recommended against the use of Secretin. In a state of immune dysfunction, the body is not attacking itself, but is launching an over- or under-normal response to foreign agents - bacteria, viruses, foods, etc. The dysregulation is theorized to release many by-products, including cytokines, which may inhibit brain function. I encourage your to read the hypothesis statement, which can be found at http://www.nids.net for a much deeper discussion of this topic. Best wishes, Sandy On 18 Sep 99 o Silva (o Silva <onelist>) wrote: > From: " o Silva " <rsilva@...> > > Mr Dugua: > > Please look up the original DAN! document written in 1995. You will > see that the original DAN! protocol refers to autoimmunity in autism > and recommends several tests and treatments. DAN! has always been > " on-board " . > > I got in on this thread because someone was interested in going to > the DAN! Conference and Dr. Goldberg did not agree with the approach > so they decided not to go. My point here is that Dr. Goldberg > criticizes DAN! and all his points can be applied right back at him > and his approach. > > I believe Dr. G's approach has merit. That is why I subscribe to > this list. My daughter was in his care for two years. I have had > many hours of phone conversations with him. > > My daughter was on Nizoral for 9 months and Diflucan for 7 months. > My daughter never had a candida problem. None of her testing ever > showed a candida problem. He told me all kids with a dysregulated > immune system have a candida problem. She was on zovirax for 8 > months then switched to valtrex for 9 months. Her HHV6 tires went > from 1:120 to 1:640. This is also after the kutapressin was added. > When we started with Dr. G my daughter had reactions to 2 foods. > Her eosinophils were 1.2% When we finished she was allergic to 12 > foods. Her eosinophils were 4.5% She ate everything when we > started with him. When we finished she was eating only a few items. > > The SSRIs were a disaster in our case. He kept promising me that > when we got everything adjusted she would be " normal " . He kept > pushing the " normal " as opposed to what the DAN! docs could do for > her. Her neuroSPECT was one of the most severe he had ever seen, > and this was after being in his care for 13 months. > > This is something else I would like to let you know, Mr. Dugua. Dr. > Goldberg told me that Carmen was one of the more difficult kids he > was working with. He told us to come out to LA for a neuroSPECT in > December 1997. He flew out there from Miami. He took a look at her > and said she was a bright eyed kid and a neuroSPECT was not > necessary. He told us we should spend the time seeing Fosnot. > We stayed 4 more days to see Dr. Fosnot. It was a huge expense. I > still owe Dr. Fosnot money. Dr. Goldberg told me she was the best > SLP he had seen and she had a different approach. Dr. Fosnot's > approach was no different that the approach we had been taking since > 1995. The idea that what Fosnot does is unique is unfair to > the parents that spend thousands of dollars to fly to LA to see her. > I got a hold of a transcript of a presentation Dr. G. made in North > Carolina. In it he discusses my daughter's visit to see Dr. Fosnot. > His spin of what happened is inaccurate. It was when I read that > that I decided he would no longer be my daughter's physician. I was > not impressed with Fosnot, and Dr. Goldberg used his > interpretation of our experience with her to promote Dr. Fosnot. > > He told us he knew he could reach Carmen because she was so bright > eyed. He told us he has never lost a bright eyed kid. I kept > asking him if I should take her to an immunologist. He kept saying > not yet. Let me remind you that I live in Miami - Klimas is > right here. He kept telling me not yet. Well, if this is an > autoimmune disease, why should I wait to go to an immunologist? I > finally took her to an immunologist that works with autistic kids. > He was amazed that I found one. See, this is what kills me. He > feels he is the only one doing this, and it has been going on for > years. He told us the earlier a kid came to him the better. We > started with him when Carmen was 3. She is now 6. While in his > care her home program was directed by Lovaas. The Lovaas > Institute dropped us after 18 months because of lack of progress. > My daughter's greatest progress happened in August 1998 - October > 1998 when we took her off valtrex and kutapressin and started doing > what the immunologist recommended. > > He kept pointing at her HHV6 tires. Did you know that HHV6 tires > can be elevated not because of HHV6 but because of another > infection? He kept stressing that HHV6 was the culprit. However, > when we would look at her elevated measles and rubella tires he > would tell me those numbers don't mean anything. He treats the HHV6 > with high doses of acyclovir. There are no papers proving acyclovir > is effective against HHV6. There are no papers showing high doses > of acyclovir are safe in pediatrics. > > And just because Dr. G thinks Kutapressin is safe does not mean that > it is. I believe there is a chance in some of these kids with the > hyperactive immune systems, that injecting a child repeated with pig > liver can cause them to build up antibodies against the medication. > My daughter's eosinophils went up on Kutapressin - steadily. I > asked Dr. G if she was reacting to the kutapressin. His response > was to assure me she was not. How can he assure me she was not. > > He would make negative comments about Sudhir Gupta who has been > working in autoimmunity in autism for several years. He would > discount all the work by Andy Wakefield. If you would really see > the research Wakefield has done you would see this is hard to > discount. > > Look, I don't know who did what at DAN!. I have never heard a DAN! > doc say anything negative about Goldberg, but I have heard Goldberg > spit venom about DAN! Again, I started at this because a parent > wanted to learn more by attending the DAN! and Goldberg did not > agree. I get concerned when parent think Goldberg is the only game > in town. > > Thanks for your time. > > Jo > > Goldberg/Kane/DAN > > > > From: " Montgomery " <mont@...> > > > > Hi all, > > > > My son is a Goldberg pt. Goldberg has made it clear that he does not jive > > with the DAN docs. He has a different opinion. I trust him. I was > > planning to attend the DAN conference, but have since changed my mind, as > he > > does not agree with what all they are saying. Anyone else in the same > boat? > > > > Also, I want to implement some of Dr. Kane's ideas, although I > have > > not taken my son to see her. I have just read some of her stuff. Has > any > > Goldberg pts also tried the Kane approach with success?? > > > > Trina > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 Sandy: Dr. Vijendra Singh who presented at the conference researches antibodies to Myelin Basic Protein and NAFP. These are not foreign agents. Jo Goldberg/Kane/DAN > > > > From: " Montgomery " <mont@...> > > > > Hi all, > > > > My son is a Goldberg pt. Goldberg has made it clear that he does not jive > > with the DAN docs. He has a different opinion. I trust him. I was > > planning to attend the DAN conference, but have since changed my mind, as > he > > does not agree with what all they are saying. Anyone else in the same > boat? > > > > Also, I want to implement some of Dr. Kane's ideas, although I > have > > not taken my son to see her. I have just read some of her stuff. Has > any > > Goldberg pts also tried the Kane approach with success?? > > > > Trina > > > > > > > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 Jo, You're right, auto-immunity can come from the over-active part of the immune system. I think thats one of the concerns. Autoimmunity is unfortunately something that can be or is a part of this. Cheryl Goldberg/Kane/DAN > > > > > > From: " Montgomery " <mont@...> > > > > > > Hi all, > > > > > > My son is a Goldberg pt. Goldberg has made it clear that he does not > jive > > > with the DAN docs. He has a different opinion. I trust him. I was > > > planning to attend the DAN conference, but have since changed my mind, > as > > he > > > does not agree with what all they are saying. Anyone else in the same > > boat? > > > > > > Also, I want to implement some of Dr. Kane's ideas, although I > > have > > > not taken my son to see her. I have just read some of her stuff. Has > > any > > > Goldberg pts also tried the Kane approach with success?? > > > > > > Trina > > > > > > > > > > > > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 Dear Jo, I wanted to tell you and the others on this list , that we had similar experience with Dr.Goldberg. I was so hopeful when I Found out about him in November of 1998 on the Internet (Autism and the immune connection). I really thought that he was genuine about helping children with autism. He is just another one of those doctors who have gotten into this for the wrong reasons( Money, recognition, ego...). I have no merit for his works. the only reason some people have gotten some results working with him is because of the dietary interviention part of it. I had to take the time and write this. The only people your hear from on this list are those who approve of his work. Parents like me get so discouraged that they don't even want to be part of this list. We waisted 8 month, 8 valuable months on Goldberg. We went through all the torture of doing all that blood work he asks for and he doesn't even look at it. I am not a Doctor but I saw that my son had very high gliadin antibodies. I asked him whether we should totally eliminate Gluten. He kept saying no. Dr. Shaws's organic test showed that my son had very little Yeast infection if any and can have that resolved using some acidophyllis. But Goldberg insisted that we put him on Nizoral. To cut the long story short, I found out that he was really full of it when I last saw him in South Carolina. He keeps repeating the same bull about Immune dysregulation and the need to raise money for MAT. Anyway we took our son off Kutapressin, Valterex, Nizoral (still working on reducing the SSRI slowly) and started him on 100% GLuten free diet. Within a week he started talking more, answering all questions, following instruction in school. We had my son on Kutapressin for 6 weeks without any results and he would keep saying, you need to continue! I hope this helps some of the parents who are exploring the idea of spending thousands of dollars to fly to California and do the NeuroSpect and all the other things he makes you do since he knows how desperate you are. Please don't get fooled by him. I have a lot more respect for DAN and what they stand for. At least they ask for blood test to look at them and determine the problem. Not to ignore them. Dr.Goldberg thinks everyone needs Valtrex, Nizoral and Kutapressin and SSRI. Why do you even ask people to do any test then? You treatment is the same regardless. Isn't it? Thanks, Nilo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 Cheryl Well said Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 It's one thing to disagree, we all have different opinions. I think this falls into slander, which I believe all groups have rules against. The immune dysregulation is not bull, if you look at research being done by many different doctors, the immune abnormalities are there. Cheryl Re: Dr. Goldberg and DAN > From: NYouh@... > > Dear Jo, > > I wanted to tell you and the others on this list , that we had similar > experience with Dr.Goldberg. I was so hopeful when I Found out about him in > November of 1998 on > the Internet (Autism and the immune connection). I really thought that he > was genuine about helping children with autism. He is just another one of > those doctors > who have gotten into this for the wrong reasons( Money, recognition, ego...). > I have no merit for his works. the only reason some people have gotten some > results > working with him is because of the dietary interviention part of it. I had > to take the time and write this. The only people your hear from on this list > are those who approve of his work. Parents like me get so discouraged that > they don't even want to be part > of this list. We waisted 8 month, 8 valuable months on Goldberg. We went > through all the torture of doing all that blood work he asks for and he > doesn't even look at it. > I am not a Doctor but I saw that my son had very high gliadin antibodies. I > asked him > whether we should totally eliminate Gluten. He kept saying no. Dr. Shaws's > organic > test showed that my son had very little Yeast infection if any and can have > that resolved using some acidophyllis. But Goldberg insisted that we put him > on Nizoral. > To cut the long story short, I found out that he was really full of it when I > last saw him in South Carolina. He keeps repeating the same bull about > Immune dysregulation and the need to raise money for MAT. Anyway we took our > son off Kutapressin, Valterex, Nizoral (still working on reducing the SSRI > slowly) and started him on 100% GLuten free diet. Within a week he started > talking more, answering all questions, following instruction in school. We > had my son on Kutapressin for 6 weeks without any results and he would keep > saying, you need > to continue! > I hope this helps some of the parents who are exploring the idea of spending > thousands of dollars to fly to California and do the NeuroSpect and all the > other things he makes you do since he knows how desperate you are. Please > don't get fooled by him. > I have a lot more respect for DAN and what they stand for. At least they ask > for blood > test to look at them and determine the problem. Not to ignore them. > Dr.Goldberg thinks everyone needs Valtrex, Nizoral and Kutapressin and SSRI. > Why do you even ask people to do any test then? You treatment is the same > regardless. Isn't it? > > Thanks, > Nilo > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 We saw no positive result from Kutapressin until after 3 months then it was the best thing we ever did. I'm not going to debate about Goldberg and the good he has done-I'm sure others will. What I can say is we don't think our son would have recovered from autism without him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 Dear Nilo: Thank you for your post concerning Dr. Goldberg. I appreciate taking the time eventhough your voice would be considered a minority. It gives parents who are still trying to decide information that is helpful. Kelli >From: NYouh@... > >Dear Jo, > >I wanted to tell you and the others on this list , that we had similar >experience with Dr.Goldberg. I was so hopeful when I Found out about him in >November of 1998 on > the Internet (Autism and the immune connection). I really thought that he >was genuine about helping children with autism. He is just another one of >those doctors >who have gotten into this for the wrong reasons( Money, recognition, ego...). >I have no merit for his works. the only reason some people have gotten some >results >working with him is because of the dietary interviention part of it. I had >to take the time and write this. The only people your hear from on this list >are those who approve of his work. Parents like me get so discouraged that >they don't even want to be part >of this list. We waisted 8 month, 8 valuable months on Goldberg. We went >through all the torture of doing all that blood work he asks for and he >doesn't even look at it. >I am not a Doctor but I saw that my son had very high gliadin antibodies. I >asked him >whether we should totally eliminate Gluten. He kept saying no. Dr. Shaws's >organic >test showed that my son had very little Yeast infection if any and can have >that resolved using some acidophyllis. But Goldberg insisted that we put him >on Nizoral. >To cut the long story short, I found out that he was really full of it when I >last saw him in South Carolina. He keeps repeating the same bull about >Immune dysregulation and the need to raise money for MAT. Anyway we took our >son off Kutapressin, Valterex, Nizoral (still working on reducing the SSRI >slowly) and started him on 100% GLuten free diet. Within a week he started >talking more, answering all questions, following instruction in school. We >had my son on Kutapressin for 6 weeks without any results and he would keep >saying, you need >to continue! >I hope this helps some of the parents who are exploring the idea of spending >thousands of dollars to fly to California and do the NeuroSpect and all the >other things he makes you do since he knows how desperate you are. Please >don't get fooled by him. >I have a lot more respect for DAN and what they stand for. At least they ask >for blood >test to look at them and determine the problem. Not to ignore them. >Dr.Goldberg thinks everyone needs Valtrex, Nizoral and Kutapressin and SSRI. >Why do you even ask people to do any test then? You treatment is the same >regardless. Isn't it? > >Thanks, >Nilo > > > > > Thank you, Kelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 Hi, This is the first time I am writing to the list but I am at my wits end. I have a 20 year old son who has been constantly ill with ear infections and tonsillitis. The doctors keep pumping him full of anibiotics and I am concerned about resistance to the antibiotics. I have never found a doctor that is knowledgable in working with autistic children. He is on medicaid and I don't know if it will pay for all the tests that I see are required but I am willing to do almost anything to get him healthy. Can anyone tell me about any doctors in the Houston area who can help us. Thanks to anyone who can help, Versa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 Jo, What did your immunulogist recommend that helped your child? We have not had much success with antivirals and anifungals either. Loretta > My daughter's greatest progress happened in > August 1998 - October 1998 when we took her off valtrex and kutapressin and > started doing what the immunologist recommended. > ___________________________________________________________________ Get the Internet just the way you want it. Free software, free e-mail, and free Internet access for a month! Try Juno Web: http://dl.www.juno.com/dynoget/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 We have just learned, the hard way, that Social Security respects the label of Autism as a diagnosis worthy of benefits. " Allergy syndrome and immune dysregulation " is scoffed as " not a disability " , and is not a qualifier for benefits. (The denial letter was actually mocking as well) Publically recognized, and universally accepted lingo needs to used when using these terms outside of the and MAT organizations. Re: Dr. Goldberg and DAN >From: " 1raptor " <1raptor@...> > >It's one thing to disagree, we all have different opinions. I think this >falls into slander, which I believe all groups have rules against. The >immune dysregulation is not bull, if you look at research being done by many >different doctors, the immune abnormalities are there. >Cheryl > Re: Dr. Goldberg and DAN > > >> From: NYouh@... >> >> Dear Jo, >> >> I wanted to tell you and the others on this list , that we had similar >> experience with Dr.Goldberg. I was so hopeful when I Found out about him >in >> November of 1998 on >> the Internet (Autism and the immune connection). I really thought that he >> was genuine about helping children with autism. He is just another one of >> those doctors >> who have gotten into this for the wrong reasons( Money, recognition, >ego...). >> I have no merit for his works. the only reason some people have gotten >some >> results >> working with him is because of the dietary interviention part of it. I >had >> to take the time and write this. The only people your hear from on this >list >> are those who approve of his work. Parents like me get so discouraged that >> they don't even want to be part >> of this list. We waisted 8 month, 8 valuable months on Goldberg. We went >> through all the torture of doing all that blood work he asks for and he >> doesn't even look at it. >> I am not a Doctor but I saw that my son had very high gliadin antibodies. >I >> asked him >> whether we should totally eliminate Gluten. He kept saying no. Dr. Shaws's >> organic >> test showed that my son had very little Yeast infection if any and can >have >> that resolved using some acidophyllis. But Goldberg insisted that we put >him >> on Nizoral. >> To cut the long story short, I found out that he was really full of it >when I >> last saw him in South Carolina. He keeps repeating the same bull about >> Immune dysregulation and the need to raise money for MAT. Anyway we took >our >> son off Kutapressin, Valterex, Nizoral (still working on reducing the SSRI >> slowly) and started him on 100% GLuten free diet. Within a week he started >> talking more, answering all questions, following instruction in school. We >> had my son on Kutapressin for 6 weeks without any results and he would >keep >> saying, you need >> to continue! >> I hope this helps some of the parents who are exploring the idea of >spending >> thousands of dollars to fly to California and do the NeuroSpect and all >the >> other things he makes you do since he knows how desperate you are. Please >> don't get fooled by him. >> I have a lot more respect for DAN and what they stand for. At least they >ask >> for blood >> test to look at them and determine the problem. Not to ignore them. >> Dr.Goldberg thinks everyone needs Valtrex, Nizoral and Kutapressin and >SSRI. >> Why do you even ask people to do any test then? You treatment is the same >> regardless. Isn't it? >> >> Thanks, >> Nilo >> >> >> >> >> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 1999 Report Share Posted September 20, 1999 My oldest son at 18 easily received SSI benefits just using the psychological reports and a few years' worth of IEPs. By age 14 the code was changed to 14 for autism. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 Versa, My son had chronic ear infections for years before I took him off of milk and all milk products. Now he hardly ever gets sick. I highly recommend trying this, if you haven't already. I also recommend a book by Schmidt called Childhood Ear Infections. I had chronic tonsilitis as a child, and never realized why, until I found out I had allergies. While I'm not allergic to dairy, I'm very allergic to mold and some pollens. I would recommend going to an allergist, or at least trying claritin. I recommend this to a college student that does ABA with our son, and the claritin eliminated her tonsilitis (she was about to have them removed). Hope this helps. Loretta On Mon, 20 Sep 1999 09:22:35 -0500 " Elroy Salaiz " <starjames2@...> writes: >From: " Elroy Salaiz " <starjames2@...> > >Hi, >This is the first time I am writing to the list but I am at my wits >end. I >have a 20 year old son who has been constantly ill with ear infections >and >tonsillitis. The doctors keep pumping him full of anibiotics and I am >concerned about resistance to the antibiotics. I have never found a >doctor >that is knowledgable in working with autistic children. He is on >medicaid >and I don't know if it will pay for all the tests that I see are >required >but I am willing to do almost anything to get him healthy. Can anyone >tell >me about any doctors in the Houston area who can help us. > > Thanks to anyone who >can help, > Versa > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 Social Security only respects the label of autism as a diagnosis worthy of benefits if your income is below a certain level though and to me this is discrimination,as a childs disability should not have anything to do with parents income.I feel as if it should be that if one gets benefits all do. Just my opinion, Re: Dr. Goldberg and DAN > > >>From: " 1raptor " <1raptor@...> >> >>It's one thing to disagree, we all have different opinions. I think this >>falls into slander, which I believe all groups have rules against. The >>immune dysregulation is not bull, if you look at research being done by >many >>different doctors, the immune abnormalities are there. >>Cheryl >> Re: Dr. Goldberg and DAN >> >> >>> From: NYouh@... >>> >>> Dear Jo, >>> >>> I wanted to tell you and the others on this list , that we had similar >>> experience with Dr.Goldberg. I was so hopeful when I Found out about him >>in >>> November of 1998 on >>> the Internet (Autism and the immune connection). I really thought that >he >>> was genuine about helping children with autism. He is just another one of >>> those doctors >>> who have gotten into this for the wrong reasons( Money, recognition, >>ego...). >>> I have no merit for his works. the only reason some people have gotten >>some >>> results >>> working with him is because of the dietary interviention part of it. I >>had >>> to take the time and write this. The only people your hear from on this >>list >>> are those who approve of his work. Parents like me get so discouraged >that >>> they don't even want to be part >>> of this list. We waisted 8 month, 8 valuable months on Goldberg. We went >>> through all the torture of doing all that blood work he asks for and he >>> doesn't even look at it. >>> I am not a Doctor but I saw that my son had very high gliadin antibodies. >>I >>> asked him >>> whether we should totally eliminate Gluten. He kept saying no. Dr. >Shaws's >>> organic >>> test showed that my son had very little Yeast infection if any and can >>have >>> that resolved using some acidophyllis. But Goldberg insisted that we put >>him >>> on Nizoral. >>> To cut the long story short, I found out that he was really full of it >>when I >>> last saw him in South Carolina. He keeps repeating the same bull about >>> Immune dysregulation and the need to raise money for MAT. Anyway we took >>our >>> son off Kutapressin, Valterex, Nizoral (still working on reducing the >SSRI >>> slowly) and started him on 100% GLuten free diet. Within a week he >started >>> talking more, answering all questions, following instruction in school. >We >>> had my son on Kutapressin for 6 weeks without any results and he would >>keep >>> saying, you need >>> to continue! >>> I hope this helps some of the parents who are exploring the idea of >>spending >>> thousands of dollars to fly to California and do the NeuroSpect and all >>the >>> other things he makes you do since he knows how desperate you are. Please >>> don't get fooled by him. >>> I have a lot more respect for DAN and what they stand for. At least they >>ask >>> for blood >>> test to look at them and determine the problem. Not to ignore them. >>> Dr.Goldberg thinks everyone needs Valtrex, Nizoral and Kutapressin and >>SSRI. >>> Why do you even ask people to do any test then? You treatment is the same >>> regardless. Isn't it? >>> >>> Thanks, >>> Nilo >>> >>> >>> >>> >>> > >> >> >> >> >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 Re: Dr. Goldberg and DAN > > >>From: " 1raptor " <1raptor@...> >> >>It's one thing to disagree, we all have different opinions. I think this >>falls into slander, which I believe all groups have rules against. The >>immune dysregulation is not bull, if you look at research being done by >many >>different doctors, the immune abnormalities are there. >>Cheryl >> Re: Dr. Goldberg and DAN >> >> >>> From: NYouh@... >>> >>> Dear Jo, >>> >>> I wanted to tell you and the others on this list , that we had similar >>> experience with Dr.Goldberg. I was so hopeful when I Found out about him >>in >>> November of 1998 on >>> the Internet (Autism and the immune connection). I really thought that >he >>> was genuine about helping children with autism. He is just another one of >>> those doctors >>> who have gotten into this for the wrong reasons( Money, recognition, >>ego...). >>> I have no merit for his works. the only reason some people have gotten >>some >>> results >>> working with him is because of the dietary interviention part of it. I >>had >>> to take the time and write this. The only people your hear from on this >>list >>> are those who approve of his work. Parents like me get so discouraged >that >>> they don't even want to be part >>> of this list. We waisted 8 month, 8 valuable months on Goldberg. We went >>> through all the torture of doing all that blood work he asks for and he >>> doesn't even look at it. >>> I am not a Doctor but I saw that my son had very high gliadin antibodies. >>I >>> asked him >>> whether we should totally eliminate Gluten. He kept saying no. Dr. >Shaws's >>> organic >>> test showed that my son had very little Yeast infection if any and can >>have >>> that resolved using some acidophyllis. But Goldberg insisted that we put >>him >>> on Nizoral. >>> To cut the long story short, I found out that he was really full of it >>when I >>> last saw him in South Carolina. He keeps repeating the same bull about >>> Immune dysregulation and the need to raise money for MAT. Anyway we took >>our >>> son off Kutapressin, Valterex, Nizoral (still working on reducing the >SSRI >>> slowly) and started him on 100% GLuten free diet. Within a week he >started >>> talking more, answering all questions, following instruction in school. >We >>> had my son on Kutapressin for 6 weeks without any results and he would >>keep >>> saying, you need >>> to continue! >>> I hope this helps some of the parents who are exploring the idea of >>spending >>> thousands of dollars to fly to California and do the NeuroSpect and all >>the >>> other things he makes you do since he knows how desperate you are. Please >>> don't get fooled by him. >>> I have a lot more respect for DAN and what they stand for. At least they >>ask >>> for blood >>> test to look at them and determine the problem. Not to ignore them. >>> Dr.Goldberg thinks everyone needs Valtrex, Nizoral and Kutapressin and >>SSRI. >>> Why do you even ask people to do any test then? You treatment is the same >>> regardless. Isn't it? >>> >>> Thanks, >>> Nilo >>> >>> >>> >>> >>> > >> >> >> >> >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 There are waivers for autism and medical conditions that you can get from medicaid to cover medical and therapy cost. You just have to investigate and fight the fight to get the information. I know every state is different, but they all have them. I am in Indiana and make well above the max for medicaid, but we have it through a waiver. You might have to make a lot of phone calls to get the info you need but they are out there. There usually is a waiting list so the sooner you get on the better Re: Dr. Goldberg and DAN > > >>From: " 1raptor " <1raptor@...> >> >>It's one thing to disagree, we all have different opinions. I think this >>falls into slander, which I believe all groups have rules against. The >>immune dysregulation is not bull, if you look at research being done by >many >>different doctors, the immune abnormalities are there. >>Cheryl >> Re: Dr. Goldberg and DAN >> >> >>> From: NYouh@... >>> >>> Dear Jo, >>> >>> I wanted to tell you and the others on this list , that we had similar >>> experience with Dr.Goldberg. I was so hopeful when I Found out about him >>in >>> November of 1998 on >>> the Internet (Autism and the immune connection). I really thought that >he >>> was genuine about helping children with autism. He is just another one of >>> those doctors >>> who have gotten into this for the wrong reasons( Money, recognition, >>ego...). >>> I have no merit for his works. the only reason some people have gotten >>some >>> results >>> working with him is because of the dietary interviention part of it. I >>had >>> to take the time and write this. The only people your hear from on this >>list >>> are those who approve of his work. Parents like me get so discouraged >that >>> they don't even want to be part >>> of this list. We waisted 8 month, 8 valuable months on Goldberg. We went >>> through all the torture of doing all that blood work he asks for and he >>> doesn't even look at it. >>> I am not a Doctor but I saw that my son had very high gliadin antibodies. >>I >>> asked him >>> whether we should totally eliminate Gluten. He kept saying no. Dr. >Shaws's >>> organic >>> test showed that my son had very little Yeast infection if any and can >>have >>> that resolved using some acidophyllis. But Goldberg insisted that we put >>him >>> on Nizoral. >>> To cut the long story short, I found out that he was really full of it >>when I >>> last saw him in South Carolina. He keeps repeating the same bull about >>> Immune dysregulation and the need to raise money for MAT. Anyway we took >>our >>> son off Kutapressin, Valterex, Nizoral (still working on reducing the >SSRI >>> slowly) and started him on 100% GLuten free diet. Within a week he >started >>> talking more, answering all questions, following instruction in school. >We >>> had my son on Kutapressin for 6 weeks without any results and he would >>keep >>> saying, you need >>> to continue! >>> I hope this helps some of the parents who are exploring the idea of >>spending >>> thousands of dollars to fly to California and do the NeuroSpect and all >>the >>> other things he makes you do since he knows how desperate you are. Please >>> don't get fooled by him. >>> I have a lot more respect for DAN and what they stand for. At least they >>ask >>> for blood >>> test to look at them and determine the problem. Not to ignore them. >>> Dr.Goldberg thinks everyone needs Valtrex, Nizoral and Kutapressin and >>SSRI. >>> Why do you even ask people to do any test then? You treatment is the same >>> regardless. Isn't it? >>> >>> Thanks, >>> Nilo >>> >>> >>> >>> >>> > >> >> >> >> >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 Developmental services is suppose to roll my son over to medicaid waiver next month,It has been a year since I signed up with them and the only help they have been is a case of pull ups.Hopefully,the medicaid waiver will go into effect next month, Thanks, Re: Dr. Goldberg and DAN >> >> >>>From: " 1raptor " <1raptor@...> >>> >>>It's one thing to disagree, we all have different opinions. I think this >>>falls into slander, which I believe all groups have rules against. The >>>immune dysregulation is not bull, if you look at research being done by >>many >>>different doctors, the immune abnormalities are there. >>>Cheryl >>> Re: Dr. Goldberg and DAN >>> >>> >>>> From: NYouh@... >>>> >>>> Dear Jo, >>>> >>>> I wanted to tell you and the others on this list , that we had similar >>>> experience with Dr.Goldberg. I was so hopeful when I Found out about him >>>in >>>> November of 1998 on >>>> the Internet (Autism and the immune connection). I really thought that >>he >>>> was genuine about helping children with autism. He is just another one >of >>>> those doctors >>>> who have gotten into this for the wrong reasons( Money, recognition, >>>ego...). >>>> I have no merit for his works. the only reason some people have gotten >>>some >>>> results >>>> working with him is because of the dietary interviention part of it. I >>>had >>>> to take the time and write this. The only people your hear from on this >>>list >>>> are those who approve of his work. Parents like me get so discouraged >>that >>>> they don't even want to be part >>>> of this list. We waisted 8 month, 8 valuable months on Goldberg. We went >>>> through all the torture of doing all that blood work he asks for and he >>>> doesn't even look at it. >>>> I am not a Doctor but I saw that my son had very high gliadin >antibodies. >>>I >>>> asked him >>>> whether we should totally eliminate Gluten. He kept saying no. Dr. >>Shaws's >>>> organic >>>> test showed that my son had very little Yeast infection if any and can >>>have >>>> that resolved using some acidophyllis. But Goldberg insisted that we put >>>him >>>> on Nizoral. >>>> To cut the long story short, I found out that he was really full of it >>>when I >>>> last saw him in South Carolina. He keeps repeating the same bull about >>>> Immune dysregulation and the need to raise money for MAT. Anyway we took >>>our >>>> son off Kutapressin, Valterex, Nizoral (still working on reducing the >>SSRI >>>> slowly) and started him on 100% GLuten free diet. Within a week he >>started >>>> talking more, answering all questions, following instruction in school. >>We >>>> had my son on Kutapressin for 6 weeks without any results and he would >>>keep >>>> saying, you need >>>> to continue! >>>> I hope this helps some of the parents who are exploring the idea of >>>spending >>>> thousands of dollars to fly to California and do the NeuroSpect and all >>>the >>>> other things he makes you do since he knows how desperate you are. >Please >>>> don't get fooled by him. >>>> I have a lot more respect for DAN and what they stand for. At least they >>>ask >>>> for blood >>>> test to look at them and determine the problem. Not to ignore them. >>>> Dr.Goldberg thinks everyone needs Valtrex, Nizoral and Kutapressin and >>>SSRI. >>>> Why do you even ask people to do any test then? You treatment is the >same >>>> regardless. Isn't it? >>>> >>>> Thanks, >>>> Nilo >>>> >>>> >>>> >>>> >>>> > >>> >>> >>> >>> >>> >> >>> >> > > > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 Low income was not a factor in this case. We are talking below poverty level and homeless here. The denial said " not disabled " . Referring to Immune dysregulation, allergy syndrome, cognitive dysfunction. Autism was not written on the diagnosis. this was not my son however, who has an autism label and gets SSI. This is a now homeless person. his family could not afford his meds anymore and kicked him out. I am writing on his behave as my child is related to him. Re: Dr. Goldberg and DAN > > >>From: " Bukitt " <wingding@...> >> >>We have just learned, the hard way, that Social Security respects the label >>of Autism as a diagnosis worthy of benefits. " Allergy syndrome and immune >>dysregulation " is scoffed as " not a disability " , and is not a qualifier >>for benefits. (The denial letter was actually mocking as well) Publically >>recognized, and universally accepted lingo needs to used when using these >>terms outside of the and MAT organizations. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 I called an attorney this morning who may be taking the case on contingency. He said it looks " winable " . May need to get a new doctor though who will write something that SSA recognizes as a disabilty. Re: Dr. Goldberg and DAN >> >> >>>From: " 1raptor " <1raptor@...> >>> >>>It's one thing to disagree, we all have different opinions. I think this >>>falls into slander, which I believe all groups have rules against. The >>>immune dysregulation is not bull, if you look at research being done by >>many >>>different doctors, the immune abnormalities are there. >>>Cheryl >>> Re: Dr. Goldberg and DAN >>> >>> >>>> From: NYouh@... >>>> >>>> Dear Jo, >>>> >>>> I wanted to tell you and the others on this list , that we had similar >>>> experience with Dr.Goldberg. I was so hopeful when I Found out about him >>>in >>>> November of 1998 on >>>> the Internet (Autism and the immune connection). I really thought that >>he >>>> was genuine about helping children with autism. He is just another one >of >>>> those doctors >>>> who have gotten into this for the wrong reasons( Money, recognition, >>>ego...). >>>> I have no merit for his works. the only reason some people have gotten >>>some >>>> results >>>> working with him is because of the dietary interviention part of it. I >>>had >>>> to take the time and write this. The only people your hear from on this >>>list >>>> are those who approve of his work. Parents like me get so discouraged >>that >>>> they don't even want to be part >>>> of this list. We waisted 8 month, 8 valuable months on Goldberg. We went >>>> through all the torture of doing all that blood work he asks for and he >>>> doesn't even look at it. >>>> I am not a Doctor but I saw that my son had very high gliadin >antibodies. >>>I >>>> asked him >>>> whether we should totally eliminate Gluten. He kept saying no. Dr. >>Shaws's >>>> organic >>>> test showed that my son had very little Yeast infection if any and can >>>have >>>> that resolved using some acidophyllis. But Goldberg insisted that we put >>>him >>>> on Nizoral. >>>> To cut the long story short, I found out that he was really full of it >>>when I >>>> last saw him in South Carolina. He keeps repeating the same bull about >>>> Immune dysregulation and the need to raise money for MAT. Anyway we took >>>our >>>> son off Kutapressin, Valterex, Nizoral (still working on reducing the >>SSRI >>>> slowly) and started him on 100% GLuten free diet. Within a week he >>started >>>> talking more, answering all questions, following instruction in school. >>We >>>> had my son on Kutapressin for 6 weeks without any results and he would >>>keep >>>> saying, you need >>>> to continue! >>>> I hope this helps some of the parents who are exploring the idea of >>>spending >>>> thousands of dollars to fly to California and do the NeuroSpect and all >>>the >>>> other things he makes you do since he knows how desperate you are. >Please >>>> don't get fooled by him. >>>> I have a lot more respect for DAN and what they stand for. At least they >>>ask >>>> for blood >>>> test to look at them and determine the problem. Not to ignore them. >>>> Dr.Goldberg thinks everyone needs Valtrex, Nizoral and Kutapressin and >>>SSRI. >>>> Why do you even ask people to do any test then? You treatment is the >same >>>> regardless. Isn't it? >>>> >>>> Thanks, >>>> Nilo >>>> >>>> >>>> >>>> >>>> > >>> >>> >>> >>> >>> >> >>> >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 , Last spring social security came out with guidelines on CFS as a medically determinable impairment. Maybe the person you are talking about would have things a little easier now. Their guidelines list the tests and abnormalities as what they are using to help determine a medical disability. Cheryl > From: " Bukitt " <wingding@...> > > > Low income was not a factor in this case. We are talking below poverty > level and homeless here. The denial said " not disabled " . Referring to > Immune dysregulation, allergy syndrome, cognitive dysfunction. Autism was > not written on the diagnosis. this was not my son however, who has an autism > label and gets SSI. This is a now homeless person. his family could not > afford his meds anymore and kicked him out. I am writing on his behave as my > child is related to him. > Quote Link to comment Share on other sites More sharing options...
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