Guest guest Posted August 13, 2000 Report Share Posted August 13, 2000 All of the workup should be done so that Dr Goldberg can get a clear and accurate picture of what is going on within your child. We also have a DAN Dr and we thought HE had done all of the tests ... but after seeing the results from the tests Dr G ordered .... it was very clear where problems were/weren't. We have Federal Blue Cross/Shield. They paid for over 75% of the bloodwork, once the $250 deductable was met. Total cost without medical ins would've been close to $4000. With Med ins, it didn't exceed $500. Now Dr G's OV bills are another story since we live on the East Coast. :-) doris from land Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2001 Report Share Posted October 17, 2001 To All, Just a reminder we are not following DAN physicians with the protocol. We do not give secretin injections. Please read the website neuroimmunedr.com. There is hard, factual, logical and science proving Dr. Goldberg's and other researchers, scientists and physicians that the protocol will treat and even possibly cure our children. We must start reading the info in the neuroimmunedr.com website !! Thank you, Michele Davies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2001 Report Share Posted October 21, 2001 It's not all that clear where on the web site this information is. It would be very helpful if there were a separate section entitled " protocol " . Thanks, Aliza --- isoaa@... wrote: > > To All, > > Just a reminder we are not following DAN physicians > with the protocol. We do not give secretin > injections. Please read the website > neuroimmunedr.com. > There is hard, factual, logical and science proving > Dr. > Goldberg's and other researchers, scientists and > physicians > that the protocol will treat and even possibly > cure > our children. We must start reading the info in the > neuroimmunedr.com website !! > > Thank you, > Michele Davies > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2001 Report Share Posted October 24, 2001 The protocol is child specific based upon history and bloodwork. Kathy -NNY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2001 Report Share Posted November 30, 2001 The Coaltion is working as we speak to finalize the first draft of a protocol handbook. we are working very hard and as fast as we can. we can sure use help to speed this up. we are also working on standardizing new patient packets and Nids info packets to inquirers. please, if you can help in any way, call or e-mail me at 707-538-2193 Tina M. Hendrix Cure2000@... Vice-President, California Coalition Neuro-Immune Dysfunction Syndromes Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2001 Report Share Posted December 8, 2001 It would be inappropriate and bad to medicine to hand out any medical protocol to lay people. I rather doubt that Sloan Kettering hand out cancer protocols to anyone who asks. Protocols are not the same as cake recipes. You do not follow them blindly. They are guidelines for people who have the experience and training to use them. It is as important to know when not to follow a protocol in individual cases as it is to follow it. The protocol will be shared with physicians when they receive their training. That alone will not make them totally proficient but the training and experience that they bring to the training and the experience that they will get by using it will. If Dr. Goldberg spends time consulting with physicians all over the country he will not have the time to see his rather large caseload of patients, or do all of the other things he does for the organization. Kathy -NNY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2001 Report Share Posted December 9, 2001 In a message dated 12/9/2001 7:16:06 PM Central Standard Time, JOSKAT95@... writes: > The protocol > So, basically, we have to first convince our doctors that this could be the answer for our children. Then we must convince them to spend time and money for additional training? Then they can get the protocol on how to treat our children? Most doctors I know already have a full case load so it won't be the promise of lots of new patients that will lure them. Oh boy! I can tell this is going to be an uphill battle! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2001 Report Share Posted December 10, 2001 This is an issue of practicing safe, good medicine. There is, unfortunately, also the ever present issue of liability. One of the very first questions asked in a courtroom for a malpractice case is " where did you get your training for this protocol? " A protocol will give you facts the training teaches you how to use them. Neither can stand alone. Kathy -NNY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2001 Report Share Posted December 10, 2001 kATHY WROTE: > Protocols are not the same as cake recipes. You >do not follow them blindly. They are guidelines for people who have the >experience and training to use them. A " lay person " could not follow most medical protocals simply because they do not have the a.) ability to order blood tests and b.) prescribe medicines or treatments. They do have a right to information and access to what exactly is going on with their health care. >The protocol >will be shared with physicians when they receive their training. I wonder... is this about money? If the organization does this... I will leave Dr. Goldberg and I will not support the movement in any manner whats so ever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2001 Report Share Posted December 10, 2001 Lay people also do not have the medical education or training to follow a medical protocol. Interpreting the blood tests requires an understanding of all of the bodily systems and how they interact. I thought that the reasons that there are laws against practicing medicine without a license were fairly obvious. We are doing everything that we can to make the protocol available to more children. We are all frustrated that it has taken as long as it has. Kathy -NNY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2001 Report Share Posted December 11, 2001 *sigh* Kathy wrote: >Lay people also do not have the medical education or training to follow a >medical protocol. My point was that they DO have a right to SEE the protocal that is being done on either a.) them or b.) their child. There is no danger of " unskilled " layman practicing medicine in part because they are not able to do some of the simple things like prescribe medicines and order blood workups. Patients have a RIGHT to see the protocal and it should be available to them. As for liability... I find that this does not seem like a reason, to me, to not make a protocol available to other doctors. Protocols are made available to doctors- even those who are not trained in whatever speciality they are researching. In fact, I would think that the " the powers to be " (whoever they are) would be at more liability should one of their personally trained doctors find themselves in a law suit as compared to a doctor who read the protocal but was not trained and failed to mention this tidbit to a patient. As someone who is not a medical doctor, I will say this: I certainly do have the ability to understand my son's bloodwork and to understand his treatment protocal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2001 Report Share Posted December 11, 2001 In a message dated 12/10/2001 1:16:42 PM Central Standard Time, JOSKAT95@... writes: > One of the very first questions > asked in a courtroom for a malpractice case is " where did you get your > training for this protocol? " A protocol will give you facts the training > How much time and money is involved in the training? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2001 Report Share Posted December 11, 2001 , Thoses are issues that are currently being resolved. I will be posting more information shortly. a.. Marc Share President & Executive Director Research Institute and Parents Coalition 'Working To Give Our Children A Future' Re: Re: Protocol In a message dated 12/10/2001 1:16:42 PM Central Standard Time, JOSKAT95@... writes: > One of the very first questions > asked in a courtroom for a malpractice case is " where did you get your > training for this protocol? " A protocol will give you facts the training > How much time and money is involved in the training? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 I'm afraid that I do not agree that writing for medications or ordering bloodwork, not to mention interpreting it, is simple. I'm afraid that I always found it difficult and probably will always feel that way. I guess it's the habit that I have gotten into of thinking about all of the possible ramifications before I take each step. Possibly it has something to do with the fact that I have made correct decisions that had untoward results on the patients involved which resulted in dicey situations for them that could have ended badly. Aren't you lucky that these things don't worry you! I also worry about liability. I do carry malpractice but the entire issue does cause me concern. I have seen frivolous suits and the price in emotional worry and time that the practitioner and his family pays is significant. I really would not care to lose my license. If I do I can never work again. , you are very fortunate that you do not have these concerns. Kathy -NNY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 Kathy wrote: >I'm afraid that I do not agree that >writing for medications or ordering >bloodwork, not to mention interpreting >it, is simple. I'm afraid that I >always found it difficult and probably >will always You and I appear to be talking about two very different things. Perhaps that is my fault. Perhaps I do not explain my opinions and concerns in a clear manner. from this last post, it appears to me that you are talking about what a medical professional does. You are talking about making clinical decisions. You are talking about something I am not talking about. I am talking about two very different things: a.) making a protocol available to the very patients that it is being used on (I see this as a part of informed consent- I would run the other direction if a doctor said " well, there is a protocol but I am not sharing it with. Now sit there while I do it on you. " b.) That understanding science and understand why a protocol exists and what the basic messages of blood workups mean is something that I understand. Would I know what to do about it? Probably not. Can I understand what " WBC " or " segregated neutrophils " are on a blood workup and what the different implications of the result mean? Yes. There are a number of educated people on this list. We certainly can understand what things mean. Whether or not we know what one does with that information, is individual and someone like me would need a real medical professional involved. But again, a lay person can *understand* and I would have concerns about a medical professional who doesn't believe that a parent can understand what is occurring. > Aren't you lucky that these things don't worry you! > , you are >very fortunate that you do not have these concerns. Kathy -NNY I am not entirely sure if this is sincere or sarcastic. That is one of the limitations of a written forum. However, one should never forget that parents are ultimately responsible for what happens with their children. Every medication that I give my child passes through me last. I make the final decision on whether or not to follow through with a medical professional's advice. So.. I do deal with the ramifications of all the choices made along the way. I don't want to get into the issue of who has it worse because of law suits as I don't think anyone can say who is right or who is wrong. I think this is the last I will say on this particular thread as I seem to not be communicating very clearly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 , I guess you were never present at the NUMEROUS public explanations of and the protocol. There have been times when I thought if I had to sit through the lecture one more time I would scream, but each time I learned a new piece of it and made a new connection in my mind. Goldberg knows he is dealing with smart motivated parents and has never spared us the medical details nor talked down to us. I can now speak very knowledgably about my son's condition. I speak with confidence and conviction that has been treated with respect - even by medical professionals/ doctors. I do not pretend to be a doctor but after years observing my son and with Dr. Goldberg's tutelage I have a grasp on his medical condition. I watch with interest when new studies are out and how they relate to . I refer to these studies when speaking of . You are correct that there is no written protocol at present. But I know of no other doctor who has gone out of his way to inform his patients and the general public of his protocol/findings. Original Message ----- From: " H. " <eahcsc@...> < > Sent: Thursday, December 13, 2001 11:01 AM Subject: Re: Re: Protocol > Kathy wrote: > >I'm afraid that I do not agree that >writing for medications or ordering > >bloodwork, not to mention interpreting >it, is simple. I'm afraid that I > >always found it difficult and probably >will always > > > You and I appear to be talking about > two very different things. Perhaps that > is my fault. Perhaps I do not explain > my opinions and concerns in a clear manner. > > from this last post, it appears to me > that you are talking about what a > medical professional does. You are talking about > making clinical decisions. You are > talking about something I am not talking > about. > > I am talking about two very > different things: > a.) making a protocol available to the > very patients that it is being used on > (I see this as a part of informed consent- > I would run the other direction if a doctor > said " well, there is a protocol but I am not > sharing it with. Now sit there while I do it > on you. " > b.) That understanding science and understand > why a protocol exists and what the basic > messages of blood workups mean is something > that I understand. Would I know what to do > about it? Probably not. Can I understand > what " WBC " or " segregated neutrophils " are > on a blood workup and what the different > implications of the result mean? Yes. > There are a number of educated people on this > list. We certainly can understand what things > mean. Whether or not we know what one does > with that information, is individual and someone > like me would need a real medical professional > involved. But again, a lay person can > *understand* and I would have concerns about > a medical professional who doesn't believe that > a parent can understand what is occurring. > > > Aren't you lucky that these things don't worry you! > > , you are > >very fortunate that you do not have these concerns. Kathy -NNY > > I am not entirely sure if this is sincere or sarcastic. That is > one of the limitations of a written forum. However, one should never > forget that parents are ultimately responsible for what happens with their children. > Every medication that I give my child passes through me last. I make the final > decision on whether or not to follow through with a medical professional's advice. > So.. I do deal with the ramifications of all the choices made along the way. > I don't want to get into the issue of who has it worse because of law suits > as I don't think anyone can say who is right or who is wrong. > > I think this is the last I will say on this particular thread as I seem to > not be communicating very clearly. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2001 Report Share Posted December 14, 2001 Ldugua, If you have a better handle on the protocol perhaps you would be able to answer some questions for me: What is the criteria for starting an antifungal drug and for discontinuing the drug? How often are the various titers measured during treatment? These are the kinds of questions that the treating pediatricians are asking about their patients who are being seen by Dr. Goldberg. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2001 Report Share Posted December 14, 2001 I would not presume to make medical statements on this list. As I said I believe I have sense of my son's medical condition. We saw clear improvement with my son on the antifungal. Blood is drawn every three months to check liver function because of his use of this drug and others. The anti fungal is also changed @every six months to ensure continued efficacy. We also try to restrict sugars and starches in the diet to prevent yeast overgrowth as well as use probiotics, good bacteria. I do believe it is fairly common knowledge that yeast overgrowth is rampant with a compromised immune system. I believe the only way to determine discontinuation is to try your child off the drug and look for regression. Most folks say the blood tests are inconclusive. As far as the various titers go it has alot to do with how my son is doing. My kid is a PANDA - that is to say had an autoimmune reaction caused by an undetected strep infection which resulted in sudden onset Tourette's Syndrome at age 8. I would strongly suggest you inform yourself about this condition as our children, in an autoimmune state, are susceptible to it. I know several kids to whom this happened. (age of onset 7, 8, 9) Research can be done through NIMH where it is documented. My son was on a two year course of e-mycin, sucessfully presecribed by Dr. G. By the way the PANDA theory fits very well into the umbrella although when I started with Dr. G he was unaware of it. We do frequently run ASO titers (bacterial) and more infrequently viral titers. I cannot make those determinations but realize what they are for. I regret deeply that Dr. G has so few " hands on " with my child because a good Dr. can pick up alot clinically. As someone else said this is as much an art as a science in that there are so many variables to watch. It is not a recipe. My child is fourteen and has been sick for many years. I have a sense of what I am looking at now. I may not know medicine but I know a hell of alot more what's wrong with my kid that most doctors.- And both my ob/gyn and pediatric dentist refer moms to me! -- Original Message ----- From: " Lovemykiddo " <lovemykiddo@...> < > Sent: Friday, December 14, 2001 12:39 AM Subject: Re: Re: Protocol > Ldugua, > > If you have a better handle on the protocol > perhaps you would be able to answer some > questions for me: > > What is the criteria for starting an antifungal drug > and for discontinuing the drug? How often are > the various titers measured during treatment? > > These are the kinds of questions that the treating > pediatricians are asking about their patients who are > being seen by Dr. Goldberg. > > > > > Responsibility for the content of this message lies strictly with > the original author, and is not necessarily endorsed by or the > opinion of the Research Institute. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2001 Report Share Posted December 14, 2001 > I would not presume to make medical statements on this list. I wasn't asking any specific medical questions. I was asking for some clarification of the protocol. I understand the " anecdotal criteria " (if there is such a phrase?) that is being discussed here all the time, but I don't think this is going to satisfy my son's physicians forever. It's not a question of whether LFT's are remaining normal and of " no harm being done " ...but a question of what kind of criteria is used to keep a child on long-term antifungal, and what kind of criteria is used to determine when he is (for lack of a better term) " well. " If it's true that " most folks think the blood tests are inconclusive " then how are they being used? Is every kid with symptoms of autism being put on an antifungal drug...or is there some other criteria besides something like a candida titer that is being used to make this decision? Again, these are questions that my son's physicians would like answers to...questions a protocol might answer. > My kid is a PANDA - that is to say had an autoimmune reaction caused by an undetected strep infection which in sudden onset Tourette's Syndrome at age 8. I would strongly suggest you inform yourself about this condition < I know a bit about PANDAS. My son has had both an ASO titer and AntiDNAse-B, and he doesn't have PANDAS, but you're right...it's probably worth mentioning to a group of people whose children have a " package deal " that might include both OCD's and strep infections. One thing about PANDAS: there is published work available on identifying and (to some extent) treating this condition both in the children's neurology journals and the psychiatric journals. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2001 Report Share Posted December 14, 2001 - Well said. I quite agree. On Thu, 13 Dec 2001 11:01:44 -0500 " H. " <eahcsc@...> writes: > Kathy wrote: > >I'm afraid that I do not agree that >writing for medications or > ordering > >bloodwork, not to mention interpreting >it, is simple. I'm afraid > that I > >always found it difficult and probably >will always > > > You and I appear to be talking about > two very different things. Perhaps that > is my fault. Perhaps I do not explain > my opinions and concerns in a clear manner. > > from this last post, it appears to me > that you are talking about what a > medical professional does. You are talking about > making clinical decisions. You are > talking about something I am not talking > about. > > I am talking about two very > different things: > a.) making a protocol available to the > very patients that it is being used on > (I see this as a part of informed consent- > I would run the other direction if a doctor > said " well, there is a protocol but I am not > sharing it with. Now sit there while I do it > on you. " > b.) That understanding science and understand > why a protocol exists and what the basic > messages of blood workups mean is something > that I understand. Would I know what to do > about it? Probably not. Can I understand > what " WBC " or " segregated neutrophils " are > on a blood workup and what the different > implications of the result mean? Yes. > There are a number of educated people on this > list. We certainly can understand what things > mean. Whether or not we know what one does > with that information, is individual and someone > like me would need a real medical professional > involved. But again, a lay person can > *understand* and I would have concerns about > a medical professional who doesn't believe that > a parent can understand what is occurring. > > > Aren't you lucky that these things don't worry you! > > , you are > >very fortunate that you do not have these concerns. Kathy -NNY > > I am not entirely sure if this is sincere or sarcastic. That is > one of the limitations of a written forum. However, one should > never > forget that parents are ultimately responsible for what happens with > their children. > Every medication that I give my child passes through me last. I > make the final > decision on whether or not to follow through with a medical > professional's advice. > So.. I do deal with the ramifications of all the choices made along > the way. > I don't want to get into the issue of who has it worse because of > law suits > as I don't think anyone can say who is right or who is wrong. > > I think this is the last I will say on this particular thread as I > seem to > not be communicating very clearly. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2001 Report Share Posted December 14, 2001 I haven't had the privilege of being able to attend one of his lectures. Although I have seen a tape of one, it's hard for me to bring that in to an IEP meeting and ask my son's teachers to take a look at it to help them understand why we are putting him on all the different medications and to please bear with us if one of them is causing negative reactions. They do listen when I explain it to them, but I think that it always has more weight behind it when it comes from an MD. To hand them something and say this is the protocol my son is following and why it is benefitting him would be a great help to me and my son. I doubt that educators are the target audience for the written protocol, but they are with our kids so many waking hours that they need to be informed too so they can be understanding and part of the observation process to see if a med is working or not. On Thu, 13 Dec 2001 16:02:26 -0500 " ldugua " <Ldugua@...> writes: > , I guess you were never present at the NUMEROUS public > explanations of > and the protocol. There have been times when I thought if I > had to sit > through the lecture one more time I would scream, but each time I > learned a > new piece of it and made a new connection in my mind. > > Goldberg knows he is dealing with smart motivated parents and has > never > spared us the medical details nor talked down to us. > > I can now speak very knowledgably about my son's condition. I speak > with > confidence and conviction that has been treated with respect - even > by > medical professionals/ doctors. I do not pretend to be a doctor but > after > years observing my son and with Dr. Goldberg's tutelage I have a > grasp on > his medical condition. I watch with interest when new studies are > out and > how they relate to . I refer to these studies when speaking of > . > > You are correct that there is no written protocol at present. But I > know of > no other doctor who has gone out of his way to inform his patients > and the > general public of his protocol/findings. > > Original Message ----- > From: " H. " <eahcsc@...> > < > > Sent: Thursday, December 13, 2001 11:01 AM > Subject: Re: Re: Protocol > > > > Kathy wrote: > > >I'm afraid that I do not agree that >writing for medications or > ordering > > >bloodwork, not to mention interpreting >it, is simple. I'm afraid > that I > > >always found it difficult and probably >will always > > > > > > You and I appear to be talking about > > two very different things. Perhaps that > > is my fault. Perhaps I do not explain > > my opinions and concerns in a clear manner. > > > > from this last post, it appears to me > > that you are talking about what a > > medical professional does. You are talking about > > making clinical decisions. You are > > talking about something I am not talking > > about. > > > > I am talking about two very > > different things: > > a.) making a protocol available to the > > very patients that it is being used on > > (I see this as a part of informed consent- > > I would run the other direction if a doctor > > said " well, there is a protocol but I am not > > sharing it with. Now sit there while I do it > > on you. " > > b.) That understanding science and understand > > why a protocol exists and what the basic > > messages of blood workups mean is something > > that I understand. Would I know what to do > > about it? Probably not. Can I understand > > what " WBC " or " segregated neutrophils " are > > on a blood workup and what the different > > implications of the result mean? Yes. > > There are a number of educated people on this > > list. We certainly can understand what things > > mean. Whether or not we know what one does > > with that information, is individual and someone > > like me would need a real medical professional > > involved. But again, a lay person can > > *understand* and I would have concerns about > > a medical professional who doesn't believe that > > a parent can understand what is occurring. > > > > > Aren't you lucky that these things don't worry you! > > > , you are > > >very fortunate that you do not have these concerns. Kathy > -NNY > > > > I am not entirely sure if this is sincere or sarcastic. That is > > one of the limitations of a written forum. However, one should > never > > forget that parents are ultimately responsible for what happens > with their > children. > > Every medication that I give my child passes through me last. I > make the > final > > decision on whether or not to follow through with a medical > professional's > advice. > > So.. I do deal with the ramifications of all the choices made > along the > way. > > I don't want to get into the issue of who has it worse because of > law > suits > > as I don't think anyone can say who is right or who is wrong. > > > > I think this is the last I will say on this particular thread as I > seem to > > not be communicating very clearly. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2001 Report Share Posted December 15, 2001 , As is does seem that you want to beat this horse into the ground: If your child does clearly better on an antifungal you keep him on it. If you see regression when you take him off it, as his body is in an immune compromised state you would probably do well to keep him on it, remembering the blood tests. Dr. Zimmerman, s Hopkins Autism specialist was a surprised witness about this through one of Goldberg's patients and quite amazed at the whole thing. As far as the PANDAs go and the Suedo work, documentation has been extensive but not especially helpful in the area of treatment. Long term use of penicillin as well as plasma pheresus (sic)(heating the blood to kill infection) for instance are not particularly useful. Dr. G sucessfully treated my son with a long term course of e-mycin. I had personal contact with the study as well as several of the cases they were working with. Believe me when I say that the researchers were not aware of several of the other " pre existing " conditions of their trial kids. For instance they had never heard the term " sensory intergration " and were unaware of the allergies of at least one of their cases. The more I see of the medical community the more I know they are missing lots of answers. There training is to pose these hard questions. But good INNOVATIVE medicine often begins anecdotally. This is a new epidemic documented to have begun in the late 1980's. These doctors have not learned about it. I believe they are basically well meaning and I have seen a great " softening " in their thinking over the last ten years. Especially as the research supports the hypothesis, however piecemeal. For instance, did you know that a mother with an autoimmune condition has a nine times more likely chance of having an ASD child than a healthy mom? (s Hopkins study 1999) All this goes into the general assault the human immune system is under, skyrocketing allergies, asthma, AIDS and the tremendous increase in autoimmune diseases among women. So, if your doctors are unwilling to work with your child on the basis of only keeping him on drugs which he clearly does better on perhaps you should move on. And by all means if he doesn't do better take him off the drugs. The protocol is not a recipe. But as you look to the general " medical community " for answers remember how many years they were stuck on the Refrigerator Mom theory. Good Luck. Re: Re: Protocol > > > > I would not presume to make medical statements on this list. > > I wasn't asking any specific medical questions. I was asking for > some clarification of the protocol. I understand the " anecdotal > criteria " (if there is such a phrase?) that is being discussed here > all the time, but I don't think this is going to satisfy my son's > physicians forever. It's not a question of whether LFT's are > remaining normal and of " no harm being done " ...but a question of > what kind of criteria is used to keep a child on long-term > antifungal, and what kind of criteria is used to determine > when he is (for lack of a better term) " well. " > > If it's true that " most folks think the blood tests are inconclusive " > then how are they being used? Is every kid with symptoms of > autism being put on an antifungal drug...or is there some other > criteria besides something like a candida titer that is being used > to make this decision? Again, these are questions that my son's > physicians would like answers to...questions a protocol might > answer. > > > My kid is a PANDA - that is to say had an autoimmune > reaction caused by an undetected strep infection which > in sudden onset Tourette's Syndrome at age 8. I would > strongly suggest you inform yourself about this condition < > > I know a bit about PANDAS. My son has had both an > ASO titer and AntiDNAse-B, and he doesn't have PANDAS, > but you're right...it's probably worth mentioning to a group of > people whose children have a " package deal " that might > include both OCD's and strep infections. One thing about > PANDAS: there is published work available on identifying > and (to some extent) treating this condition both in the > children's neurology journals and the psychiatric journals. > > > > > > > Responsibility for the content of this message lies strictly with > the original author, and is not necessarily endorsed by or the > opinion of the Research Institute. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2001 Report Share Posted December 15, 2001 > , > As is does seem that you want to beat this horse into the ground: I think it was me and not and that you are addressing here. > So, if your doctors are unwilling to work with your child on the basis of > only keeping him on drugs which he clearly does better on perhaps you should > move on. Ouch! I am as committed to getting my child as well as he can be as you are. I am fortunate to have physicians at home who have been both personally and professionally supportive to me and to our son. Their questions are legitimate, and to imply that I should simply find a physician who allows me to completely drive the care without *some* respect to professional medical judgement and without respect to our relationship...well, it's not something I'm willing to do. I really don't want to find myself in a position of having THEM decide to move on because my behavior towards them is disrespectful or irresponsible, or because they have reached a level of professional discomfort that I can't adequately address. The reality is that most of the children who see Dr. Goldberg have other physicians involved, and there needs to be some level of respect for these physicians who are out on a limb with him , and that is really all I want. One thing is for sure...I'm prepared to move on myself, because I'm not interested in any more personal comments about what I " should do " or about how I've beat a subject into the ground. Nonetheless, the conversation has been enlightening, and I thank you for the information you've shared. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2001 Report Share Posted December 15, 2001 well since you have such a great bunch of supportive physicians please let us know when they find something out... Re: Re: Protocol > > > > , > > As is does seem that you want to beat this horse into the ground: > > I think it was me and not and that you are addressing here. > > > So, if your doctors are unwilling to work with your child on the basis of > > only keeping him on drugs which he clearly does better on perhaps you > should > > move on. > > Ouch! I am as committed to getting my child as well as he can be > as you are. I am fortunate to have physicians at home who have > been both personally and professionally supportive to me and to > our son. Their questions are legitimate, and to imply that > I should simply find a physician who allows me to completely drive > the care without *some* respect to professional medical judgement > and without respect to our relationship...well, it's not something > I'm willing to do. I really don't want to find myself in a position of > having THEM decide to move on because my behavior towards > them is disrespectful or irresponsible, or because they have reached > a level of professional discomfort that I can't adequately address. > The reality is that most of the children who see Dr. Goldberg have > other physicians involved, and there needs to be some level of > respect for these physicians who are out on a limb with him , and > that is really all I want. > > One thing is for sure...I'm prepared to move on myself, because > I'm not interested in any more personal comments about what I > " should do " or about how I've beat a subject into the ground. > Nonetheless, the conversation has been enlightening, and I > thank you for the information you've shared. > > > > > > > Responsibility for the content of this message lies strictly with > the original author, and is not necessarily endorsed by or the > opinion of the Research Institute. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2001 Report Share Posted December 16, 2001 Are you able to see Dr. Goldberg on a regular basis? Just curious. If not, what sort of information are you giving your regular pediatrician? We just switched and I was wondering how you explain the different medication requirements to him/her. So far our new Dr. has been fairly supportive although he doesn't understand the dosing. I know Dr. Goldberg would share this information with him but he's only one man helping so many that I can't imagine he can talk with many other doctors during the workday... With a thriving practice I'm not sure our new pediatrician would have the time or inclination to receive the training so I'm assuming at most he will play the role of supportive physician rather than spending time finding new treatments since he doesn't have a personal reason to. Also, why is it fairly easy to find DAN doctors but hard to find doctors - Dr. Goldberg seems to be lecturing at alot of locations to get the word out and the parents that email in seem to be trying to get the word out too. Is there something more we can be doing to gain the interest of doctors like the DAN movement has done? When we first got the diagnosis of autism I ordered the DAN manual. I didn't understand most of it, but I was able to share it with our pediatrician and discuss it with him. I think that's what I'd like to be able to do with the protocol too. If more doctors have a manual in front of them maybe they would be more willing to order some of the bloodwork and the meds. I've contacted Marc to see what I can do to help make this happen but maybe you have some other ideas we can try to make doctors as numerous as DAN doctors. Thanks! On Sat, 15 Dec 2001 16:22:14 -0500 " ldugua " <Ldugua@...> writes: > well since you have such a great bunch of supportive physicians > please let > us know when they find something out... > Re: Re: Protocol > > > > > > > > > , > > > As is does seem that you want to beat this horse into the > ground: > > > > I think it was me and not and that you are addressing here. > > > > > So, if your doctors are unwilling to work with your child on the > basis > of > > > only keeping him on drugs which he clearly does better on > perhaps you > > should > > > move on. > > > > Ouch! I am as committed to getting my child as well as he can be > > as you are. I am fortunate to have physicians at home who have > > been both personally and professionally supportive to me and to > > our son. Their questions are legitimate, and to imply that > > I should simply find a physician who allows me to completely > drive > > the care without *some* respect to professional medical judgement > > and without respect to our relationship...well, it's not > something > > I'm willing to do. I really don't want to find myself in a > position of > > having THEM decide to move on because my behavior towards > > them is disrespectful or irresponsible, or because they have > reached > > a level of professional discomfort that I can't adequately > address. > > The reality is that most of the children who see Dr. Goldberg > have > > other physicians involved, and there needs to be some level of > > respect for these physicians who are out on a limb with him , and > > that is really all I want. > > > > One thing is for sure...I'm prepared to move on myself, because > > I'm not interested in any more personal comments about what I > > " should do " or about how I've beat a subject into the ground. > > Nonetheless, the conversation has been enlightening, and I > > thank you for the information you've shared. > > > > > > > > > > > > > > Responsibility for the content of this message lies strictly with > > the original author, and is not necessarily endorsed by or the > > opinion of the Research Institute. > > > > > > Quote Link to comment Share on other sites More sharing options...
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