Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Wow, Stan, thanks sooooo much for posting that! just what I needed right now. I am going through something very similar right now, one difference being that my son is not yet recovered, so there is an additional emotinal load to all that. I have stumbled across some things, some of them I posted here about, that I believe might turn out to be of huge relevance in autism, and I have been trying to get some doctors and researchers to look at those issues more closely, or at least to get others interested and facilitate research that way, but I have been patronised and ignored to death. The most interesting bit, and what gives me strenght at the moment, is that they all respond VERY favourably and enthusiastically at first, but once I mention I am 'just a parent' the emails sort of dry up... this whole situation would be ridiculous if it wasn't downright TRAGIC. Natasa > > This is a good time to say that I don't often proof read my notes or use the " Maybe you > should sleep on it before sending it " rule. I have a lot of observations from my last week > that I want to share so FORGIVE ME if I say something without really thinking it through. > I'm just trying to catch up. > > When I started this group there were several very important people coming to me saying > that I am upsetting some other important people and I just want to stop and take a > moment to say, " Let's all lighten up " and " We are all in this together. " > > ----- > > When I first fell in love with DAN!, I had my heart broken a few times when I realized that > even the DAN! doctors have their threshold of what information they will accept from > parents. > > The first doc who broke my heart was Dr. JM. when I emailed her about my son starting to > recover through use of Valtrex. She sent me the most scaving email I had received in a > long time. I still have it and when I'm a little tired of fighting the system, I read it. My > son's developmental pediatrician is #2 on my list of painfully received emails. > > What I've learned to understand is that doctors are trained to look at things carefully, > objectively, and, for the most part, without emotion. As parents, we are full of emotion > and we are not trained on the scientific vernacular, so we can quite often be > misunderstood. And, in reality, we can often be wrong. In fact, I'll go as far to say that we > are wrong quite often in the big scheme of things. We can make a good observation and > follow it up with an ignorant assumption right afterwards. That was my original mistake > with Dr. JM. when I wrote to her about Ethan and that we should consider using this on a > larger set of children... actually, I don't know how I phrased it back then... I've learned to > speak more carefully. > > Anyway, my overzealousness and lack of scientific vernacular probably put my foot right > into a negative cement mold that I have been fighting to correct for about 2 years now. > > One of the best things that happened to me was a visit from Binstock, an > independent researcher who spends her day educating the docs by looking through the > medical research. She is a wordsmith. She was talked about in Kirby's, Evidence of > Harm as a person who watches her words carefully. > > Here are some OLD STAN to TERESA conversions: > > OLD STAN > > " We should work on getting every doctor to try Valtex for their kids on the spectrum. " > > TERESA influenced Stan > > " We are seeing some children improve on Valtex, some without viral titers. It seems that > Valtrex may have benefits beyond killing off the herpes viruses listed in the PDR. It also > may be worthwhile to continue our efforts to research what Valtrex is really doing for our > kids. Since some children are responding to Valtrex without viral titers (even some > without positive PCR results), it may make sense to consider a trial of Valtrex to a larger > group of children. I'm curious your thoughts. " > > Another simple example: > > OLD STAN > > A ton of people are responding to Valtrex. > > TERESA influenced Stan > > It seems that many people, possibly a majority of people, are responding to Valtrex when > taken with an antifungal like Diflucan or Amph B. > > You see, it's how well you qualify your position that gives you credibility. If you overstate > your position, it's easy to lose credibility. It's important to be very clear and for the most > part conservative about your claim, because if you can't back up your claim, you > immediately lose your credibility. > > Dr. Neubrander talked to me after one of my Think Tank Presentation and said the thing > that he was most impressed about was how I acknowledged that some people who gave > up on Valtrex probably did not log into the poll to tell us it didn't work for them. I offered > that possibility up front and that type of intellectual honestly gives people the feel that > what I say is generally honest and not too overstated. (Actually, Dr. N and I really covered > some nice discussion ground this week and I think / hope we will be working more closely > going forward.) > > My point is that on the doctor side of things, parents often overstate things and often > make mistakes in their assumptions. > > (Another doctor said to me that they liked how I started off the presentation saying, " And > now lets move from the scientific to the parentdotal... " [meaning a cross of being a parent > and anecdotal evidence, parentdotal being above anecdotal and less than scientific... I > really like the term.]) > > That said, as parents we are also the ones with the greatest interest in recovering our > children and the ones that spend the most time observing them. This means that we may > not be brighter or more educated, but we certainly have more time to observe our children > and that amount of time and energy, in my opinion, converts to having some insights that > are not only invaluable, but impossible for a doctor to have. Additionally, since we know > our kids so well and we are in these parent groups exchanging stories, we also hear about > children that sound like our children and when we hear stories of their recovery, we can > often connect the dots together in a way that doctors don't have the time or perspective > to. IN HERE LYES THE POWER OF THE PARENT. > > This concept is still new to doctors, even some, if not a majority of, DAN! doctors resist... > at least to some degree. > > As long as we are not doctors, we will likely be rubbing up against this fact. As we get > better as parentdotal reports, I believe doctors and researchers will continue to come > around. I think we are making continued gains, and I was very encouraged this weekend. > > On the doctors side of things, parent groups can be considered pesky because the > information is so uncontrolled. There are so many pieces of information in a group that > could be wrong or an observation used the wrong way. I had one doctor at lunch tell me > how the first 20 minutes of his initial sessions are often dispelling untruths made up in the > parent groups. At the same time, that same doctor learned more about Valtrex because of > our parent group. > > I just try to remember how many people said you can't rely on information from the > Internet. I think the Internet was the number one thing that brought me back my boy... > maybe the second and DAN! and viral researchers being the first. > > Basically, parent groups are a new entity and neither we or the doctors have learned how > to best get a long just yet. I think there is a mutual respect... and frustration. But let's > face it, it wasn't that long ago when they were told only they had the answers and here is a > comment from my son's developmental pediatrician that will always motivate me in times > of challenge... " Parents have never changed the course of medicine. " Wow! right? That was > the most shortsighted thing I think I've heard from a doctor so far. I promise to jam that > one back at her in the near future. > > OK, to sum up, I am not speaking of all doctors here. There are a growing number of > doctors who embrace the parents and parent suggestion and parent research. I find they > are often some of the best and brightest doctors. There are seemingly more of these docs > in the DAN! movement than anywhere else and I hope that there are a growing number in > years to come. > > At the same time, I hope that we as parents learn more about how to present our > parentdotal observations and suggestions in a way that meets the least resistance from > the doctors and researchers that we wish to influence. In time, I believe we well. > > That's it for tonight. See you tomorrow. > > - Stan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Wow, Stan, thanks sooooo much for posting that! just what I needed right now. I am going through something very similar right now, one difference being that my son is not yet recovered, so there is an additional emotinal load to all that. I have stumbled across some things, some of them I posted here about, that I believe might turn out to be of huge relevance in autism, and I have been trying to get some doctors and researchers to look at those issues more closely, or at least to get others interested and facilitate research that way, but I have been patronised and ignored to death. The most interesting bit, and what gives me strenght at the moment, is that they all respond VERY favourably and enthusiastically at first, but once I mention I am 'just a parent' the emails sort of dry up... this whole situation would be ridiculous if it wasn't downright TRAGIC. Natasa > > This is a good time to say that I don't often proof read my notes or use the " Maybe you > should sleep on it before sending it " rule. I have a lot of observations from my last week > that I want to share so FORGIVE ME if I say something without really thinking it through. > I'm just trying to catch up. > > When I started this group there were several very important people coming to me saying > that I am upsetting some other important people and I just want to stop and take a > moment to say, " Let's all lighten up " and " We are all in this together. " > > ----- > > When I first fell in love with DAN!, I had my heart broken a few times when I realized that > even the DAN! doctors have their threshold of what information they will accept from > parents. > > The first doc who broke my heart was Dr. JM. when I emailed her about my son starting to > recover through use of Valtrex. She sent me the most scaving email I had received in a > long time. I still have it and when I'm a little tired of fighting the system, I read it. My > son's developmental pediatrician is #2 on my list of painfully received emails. > > What I've learned to understand is that doctors are trained to look at things carefully, > objectively, and, for the most part, without emotion. As parents, we are full of emotion > and we are not trained on the scientific vernacular, so we can quite often be > misunderstood. And, in reality, we can often be wrong. In fact, I'll go as far to say that we > are wrong quite often in the big scheme of things. We can make a good observation and > follow it up with an ignorant assumption right afterwards. That was my original mistake > with Dr. JM. when I wrote to her about Ethan and that we should consider using this on a > larger set of children... actually, I don't know how I phrased it back then... I've learned to > speak more carefully. > > Anyway, my overzealousness and lack of scientific vernacular probably put my foot right > into a negative cement mold that I have been fighting to correct for about 2 years now. > > One of the best things that happened to me was a visit from Binstock, an > independent researcher who spends her day educating the docs by looking through the > medical research. She is a wordsmith. She was talked about in Kirby's, Evidence of > Harm as a person who watches her words carefully. > > Here are some OLD STAN to TERESA conversions: > > OLD STAN > > " We should work on getting every doctor to try Valtex for their kids on the spectrum. " > > TERESA influenced Stan > > " We are seeing some children improve on Valtex, some without viral titers. It seems that > Valtrex may have benefits beyond killing off the herpes viruses listed in the PDR. It also > may be worthwhile to continue our efforts to research what Valtrex is really doing for our > kids. Since some children are responding to Valtrex without viral titers (even some > without positive PCR results), it may make sense to consider a trial of Valtrex to a larger > group of children. I'm curious your thoughts. " > > Another simple example: > > OLD STAN > > A ton of people are responding to Valtrex. > > TERESA influenced Stan > > It seems that many people, possibly a majority of people, are responding to Valtrex when > taken with an antifungal like Diflucan or Amph B. > > You see, it's how well you qualify your position that gives you credibility. If you overstate > your position, it's easy to lose credibility. It's important to be very clear and for the most > part conservative about your claim, because if you can't back up your claim, you > immediately lose your credibility. > > Dr. Neubrander talked to me after one of my Think Tank Presentation and said the thing > that he was most impressed about was how I acknowledged that some people who gave > up on Valtrex probably did not log into the poll to tell us it didn't work for them. I offered > that possibility up front and that type of intellectual honestly gives people the feel that > what I say is generally honest and not too overstated. (Actually, Dr. N and I really covered > some nice discussion ground this week and I think / hope we will be working more closely > going forward.) > > My point is that on the doctor side of things, parents often overstate things and often > make mistakes in their assumptions. > > (Another doctor said to me that they liked how I started off the presentation saying, " And > now lets move from the scientific to the parentdotal... " [meaning a cross of being a parent > and anecdotal evidence, parentdotal being above anecdotal and less than scientific... I > really like the term.]) > > That said, as parents we are also the ones with the greatest interest in recovering our > children and the ones that spend the most time observing them. This means that we may > not be brighter or more educated, but we certainly have more time to observe our children > and that amount of time and energy, in my opinion, converts to having some insights that > are not only invaluable, but impossible for a doctor to have. Additionally, since we know > our kids so well and we are in these parent groups exchanging stories, we also hear about > children that sound like our children and when we hear stories of their recovery, we can > often connect the dots together in a way that doctors don't have the time or perspective > to. IN HERE LYES THE POWER OF THE PARENT. > > This concept is still new to doctors, even some, if not a majority of, DAN! doctors resist... > at least to some degree. > > As long as we are not doctors, we will likely be rubbing up against this fact. As we get > better as parentdotal reports, I believe doctors and researchers will continue to come > around. I think we are making continued gains, and I was very encouraged this weekend. > > On the doctors side of things, parent groups can be considered pesky because the > information is so uncontrolled. There are so many pieces of information in a group that > could be wrong or an observation used the wrong way. I had one doctor at lunch tell me > how the first 20 minutes of his initial sessions are often dispelling untruths made up in the > parent groups. At the same time, that same doctor learned more about Valtrex because of > our parent group. > > I just try to remember how many people said you can't rely on information from the > Internet. I think the Internet was the number one thing that brought me back my boy... > maybe the second and DAN! and viral researchers being the first. > > Basically, parent groups are a new entity and neither we or the doctors have learned how > to best get a long just yet. I think there is a mutual respect... and frustration. But let's > face it, it wasn't that long ago when they were told only they had the answers and here is a > comment from my son's developmental pediatrician that will always motivate me in times > of challenge... " Parents have never changed the course of medicine. " Wow! right? That was > the most shortsighted thing I think I've heard from a doctor so far. I promise to jam that > one back at her in the near future. > > OK, to sum up, I am not speaking of all doctors here. There are a growing number of > doctors who embrace the parents and parent suggestion and parent research. I find they > are often some of the best and brightest doctors. There are seemingly more of these docs > in the DAN! movement than anywhere else and I hope that there are a growing number in > years to come. > > At the same time, I hope that we as parents learn more about how to present our > parentdotal observations and suggestions in a way that meets the least resistance from > the doctors and researchers that we wish to influence. In time, I believe we well. > > That's it for tonight. See you tomorrow. > > - Stan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Natasa, I love your information and appreciate all that you do. Although, I too, am just another parent. But that's how I got onto Valtrex. Stan, just another parent who gives tremendously of himself. Just parents, are doing a lot these days! Take care, Re: Parendotal Power Wow, Stan, thanks sooooo much for posting that! just what I needed right now. I am going through something very similar right now, one difference being that my son is not yet recovered, so there is an additional emotinal load to all that. I have stumbled across some things, some of them I posted here about, that I believe might turn out to be of huge relevance in autism, and I have been trying to get some doctors and researchers to look at those issues more closely, or at least to get others interested and facilitate research that way, but I have been patronised and ignored to death. The most interesting bit, and what gives me strenght at the moment, is that they all respond VERY favourably and enthusiastically at first, but once I mention I am 'just a parent' the emails sort of dry up... this whole situation would be ridiculous if it wasn't downright TRAGIC. Natasa > > This is a good time to say that I don't often proof read my notes or use the " Maybe you > should sleep on it before sending it " rule. I have a lot of observations from my last week > that I want to share so FORGIVE ME if I say something without really thinking it through. > I'm just trying to catch up. > > When I started this group there were several very important people coming to me saying > that I am upsetting some other important people and I just want to stop and take a > moment to say, " Let's all lighten up " and " We are all in this together. " > > ----- > > When I first fell in love with DAN!, I had my heart broken a few times when I realized that > even the DAN! doctors have their threshold of what information they will accept from > parents. > > The first doc who broke my heart was Dr. JM. when I emailed her about my son starting to > recover through use of Valtrex. She sent me the most scaving email I had received in a > long time. I still have it and when I'm a little tired of fighting the system, I read it. My > son's developmental pediatrician is #2 on my list of painfully received emails. > > What I've learned to understand is that doctors are trained to look at things carefully, > objectively, and, for the most part, without emotion. As parents, we are full of emotion > and we are not trained on the scientific vernacular, so we can quite often be > misunderstood. And, in reality, we can often be wrong. In fact, I'll go as far to say that we > are wrong quite often in the big scheme of things. We can make a good observation and > follow it up with an ignorant assumption right afterwards. That was my original mistake > with Dr. JM. when I wrote to her about Ethan and that we should consider using this on a > larger set of children... actually, I don't know how I phrased it back then... I've learned to > speak more carefully. > > Anyway, my overzealousness and lack of scientific vernacular probably put my foot right > into a negative cement mold that I have been fighting to correct for about 2 years now. > > One of the best things that happened to me was a visit from Binstock, an > independent researcher who spends her day educating the docs by looking through the > medical research. She is a wordsmith. She was talked about in Kirby's, Evidence of > Harm as a person who watches her words carefully. > > Here are some OLD STAN to TERESA conversions: > > OLD STAN > > " We should work on getting every doctor to try Valtex for their kids on the spectrum. " > > TERESA influenced Stan > > " We are seeing some children improve on Valtex, some without viral titers. It seems that > Valtrex may have benefits beyond killing off the herpes viruses listed in the PDR. It also > may be worthwhile to continue our efforts to research what Valtrex is really doing for our > kids. Since some children are responding to Valtrex without viral titers (even some > without positive PCR results), it may make sense to consider a trial of Valtrex to a larger > group of children. I'm curious your thoughts. " > > Another simple example: > > OLD STAN > > A ton of people are responding to Valtrex. > > TERESA influenced Stan > > It seems that many people, possibly a majority of people, are responding to Valtrex when > taken with an antifungal like Diflucan or Amph B. > > You see, it's how well you qualify your position that gives you credibility. If you overstate > your position, it's easy to lose credibility. It's important to be very clear and for the most > part conservative about your claim, because if you can't back up your claim, you > immediately lose your credibility. > > Dr. Neubrander talked to me after one of my Think Tank Presentation and said the thing > that he was most impressed about was how I acknowledged that some people who gave > up on Valtrex probably did not log into the poll to tell us it didn't work for them. I offered > that possibility up front and that type of intellectual honestly gives people the feel that > what I say is generally honest and not too overstated. (Actually, Dr. N and I really covered > some nice discussion ground this week and I think / hope we will be working more closely > going forward.) > > My point is that on the doctor side of things, parents often overstate things and often > make mistakes in their assumptions. > > (Another doctor said to me that they liked how I started off the presentation saying, " And > now lets move from the scientific to the parentdotal... " [meaning a cross of being a parent > and anecdotal evidence, parentdotal being above anecdotal and less than scientific... I > really like the term.]) > > That said, as parents we are also the ones with the greatest interest in recovering our > children and the ones that spend the most time observing them. This means that we may > not be brighter or more educated, but we certainly have more time to observe our children > and that amount of time and energy, in my opinion, converts to having some insights that > are not only invaluable, but impossible for a doctor to have. Additionally, since we know > our kids so well and we are in these parent groups exchanging stories, we also hear about > children that sound like our children and when we hear stories of their recovery, we can > often connect the dots together in a way that doctors don't have the time or perspective > to. IN HERE LYES THE POWER OF THE PARENT. > > This concept is still new to doctors, even some, if not a majority of, DAN! doctors resist... > at least to some degree. > > As long as we are not doctors, we will likely be rubbing up against this fact. As we get > better as parentdotal reports, I believe doctors and researchers will continue to come > around. I think we are making continued gains, and I was very encouraged this weekend. > > On the doctors side of things, parent groups can be considered pesky because the > information is so uncontrolled. There are so many pieces of information in a group that > could be wrong or an observation used the wrong way. I had one doctor at lunch tell me > how the first 20 minutes of his initial sessions are often dispelling untruths made up in the > parent groups. At the same time, that same doctor learned more about Valtrex because of > our parent group. > > I just try to remember how many people said you can't rely on information from the > Internet. I think the Internet was the number one thing that brought me back my boy... > maybe the second and DAN! and viral researchers being the first. > > Basically, parent groups are a new entity and neither we or the doctors have learned how > to best get a long just yet. I think there is a mutual respect... and frustration. But let's > face it, it wasn't that long ago when they were told only they had the answers and here is a > comment from my son's developmental pediatrician that will always motivate me in times > of challenge... " Parents have never changed the course of medicine. " Wow! right? That was > the most shortsighted thing I think I've heard from a doctor so far. I promise to jam that > one back at her in the near future. > > OK, to sum up, I am not speaking of all doctors here. There are a growing number of > doctors who embrace the parents and parent suggestion and parent research. I find they > are often some of the best and brightest doctors. There are seemingly more of these docs > in the DAN! movement than anywhere else and I hope that there are a growing number in > years to come. > > At the same time, I hope that we as parents learn more about how to present our > parentdotal observations and suggestions in a way that meets the least resistance from > the doctors and researchers that we wish to influence. In time, I believe we well. > > That's it for tonight. See you tomorrow. > > - Stan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Natasa, I love your information and appreciate all that you do. Although, I too, am just another parent. But that's how I got onto Valtrex. Stan, just another parent who gives tremendously of himself. Just parents, are doing a lot these days! Take care, Re: Parendotal Power Wow, Stan, thanks sooooo much for posting that! just what I needed right now. I am going through something very similar right now, one difference being that my son is not yet recovered, so there is an additional emotinal load to all that. I have stumbled across some things, some of them I posted here about, that I believe might turn out to be of huge relevance in autism, and I have been trying to get some doctors and researchers to look at those issues more closely, or at least to get others interested and facilitate research that way, but I have been patronised and ignored to death. The most interesting bit, and what gives me strenght at the moment, is that they all respond VERY favourably and enthusiastically at first, but once I mention I am 'just a parent' the emails sort of dry up... this whole situation would be ridiculous if it wasn't downright TRAGIC. Natasa > > This is a good time to say that I don't often proof read my notes or use the " Maybe you > should sleep on it before sending it " rule. I have a lot of observations from my last week > that I want to share so FORGIVE ME if I say something without really thinking it through. > I'm just trying to catch up. > > When I started this group there were several very important people coming to me saying > that I am upsetting some other important people and I just want to stop and take a > moment to say, " Let's all lighten up " and " We are all in this together. " > > ----- > > When I first fell in love with DAN!, I had my heart broken a few times when I realized that > even the DAN! doctors have their threshold of what information they will accept from > parents. > > The first doc who broke my heart was Dr. JM. when I emailed her about my son starting to > recover through use of Valtrex. She sent me the most scaving email I had received in a > long time. I still have it and when I'm a little tired of fighting the system, I read it. My > son's developmental pediatrician is #2 on my list of painfully received emails. > > What I've learned to understand is that doctors are trained to look at things carefully, > objectively, and, for the most part, without emotion. As parents, we are full of emotion > and we are not trained on the scientific vernacular, so we can quite often be > misunderstood. And, in reality, we can often be wrong. In fact, I'll go as far to say that we > are wrong quite often in the big scheme of things. We can make a good observation and > follow it up with an ignorant assumption right afterwards. That was my original mistake > with Dr. JM. when I wrote to her about Ethan and that we should consider using this on a > larger set of children... actually, I don't know how I phrased it back then... I've learned to > speak more carefully. > > Anyway, my overzealousness and lack of scientific vernacular probably put my foot right > into a negative cement mold that I have been fighting to correct for about 2 years now. > > One of the best things that happened to me was a visit from Binstock, an > independent researcher who spends her day educating the docs by looking through the > medical research. She is a wordsmith. She was talked about in Kirby's, Evidence of > Harm as a person who watches her words carefully. > > Here are some OLD STAN to TERESA conversions: > > OLD STAN > > " We should work on getting every doctor to try Valtex for their kids on the spectrum. " > > TERESA influenced Stan > > " We are seeing some children improve on Valtex, some without viral titers. It seems that > Valtrex may have benefits beyond killing off the herpes viruses listed in the PDR. It also > may be worthwhile to continue our efforts to research what Valtrex is really doing for our > kids. Since some children are responding to Valtrex without viral titers (even some > without positive PCR results), it may make sense to consider a trial of Valtrex to a larger > group of children. I'm curious your thoughts. " > > Another simple example: > > OLD STAN > > A ton of people are responding to Valtrex. > > TERESA influenced Stan > > It seems that many people, possibly a majority of people, are responding to Valtrex when > taken with an antifungal like Diflucan or Amph B. > > You see, it's how well you qualify your position that gives you credibility. If you overstate > your position, it's easy to lose credibility. It's important to be very clear and for the most > part conservative about your claim, because if you can't back up your claim, you > immediately lose your credibility. > > Dr. Neubrander talked to me after one of my Think Tank Presentation and said the thing > that he was most impressed about was how I acknowledged that some people who gave > up on Valtrex probably did not log into the poll to tell us it didn't work for them. I offered > that possibility up front and that type of intellectual honestly gives people the feel that > what I say is generally honest and not too overstated. (Actually, Dr. N and I really covered > some nice discussion ground this week and I think / hope we will be working more closely > going forward.) > > My point is that on the doctor side of things, parents often overstate things and often > make mistakes in their assumptions. > > (Another doctor said to me that they liked how I started off the presentation saying, " And > now lets move from the scientific to the parentdotal... " [meaning a cross of being a parent > and anecdotal evidence, parentdotal being above anecdotal and less than scientific... I > really like the term.]) > > That said, as parents we are also the ones with the greatest interest in recovering our > children and the ones that spend the most time observing them. This means that we may > not be brighter or more educated, but we certainly have more time to observe our children > and that amount of time and energy, in my opinion, converts to having some insights that > are not only invaluable, but impossible for a doctor to have. Additionally, since we know > our kids so well and we are in these parent groups exchanging stories, we also hear about > children that sound like our children and when we hear stories of their recovery, we can > often connect the dots together in a way that doctors don't have the time or perspective > to. IN HERE LYES THE POWER OF THE PARENT. > > This concept is still new to doctors, even some, if not a majority of, DAN! doctors resist... > at least to some degree. > > As long as we are not doctors, we will likely be rubbing up against this fact. As we get > better as parentdotal reports, I believe doctors and researchers will continue to come > around. I think we are making continued gains, and I was very encouraged this weekend. > > On the doctors side of things, parent groups can be considered pesky because the > information is so uncontrolled. There are so many pieces of information in a group that > could be wrong or an observation used the wrong way. I had one doctor at lunch tell me > how the first 20 minutes of his initial sessions are often dispelling untruths made up in the > parent groups. At the same time, that same doctor learned more about Valtrex because of > our parent group. > > I just try to remember how many people said you can't rely on information from the > Internet. I think the Internet was the number one thing that brought me back my boy... > maybe the second and DAN! and viral researchers being the first. > > Basically, parent groups are a new entity and neither we or the doctors have learned how > to best get a long just yet. I think there is a mutual respect... and frustration. But let's > face it, it wasn't that long ago when they were told only they had the answers and here is a > comment from my son's developmental pediatrician that will always motivate me in times > of challenge... " Parents have never changed the course of medicine. " Wow! right? That was > the most shortsighted thing I think I've heard from a doctor so far. I promise to jam that > one back at her in the near future. > > OK, to sum up, I am not speaking of all doctors here. There are a growing number of > doctors who embrace the parents and parent suggestion and parent research. I find they > are often some of the best and brightest doctors. There are seemingly more of these docs > in the DAN! movement than anywhere else and I hope that there are a growing number in > years to come. > > At the same time, I hope that we as parents learn more about how to present our > parentdotal observations and suggestions in a way that meets the least resistance from > the doctors and researchers that we wish to influence. In time, I believe we well. > > That's it for tonight. See you tomorrow. > > - Stan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 Natasa, you are clearly the calcium channel guru in my book, medical degree or not. I suspect that DAN! docs get overwhelmed by all the science (just to a lesser degree than us parents) and struggle to keep up with all the new information. Also, most of them have such a busy clinical practice that it seems risky to them to spend much time on biochemical research. My fear is that the researchers who could reasonably do the experiments you propose (mostly the authors of the studies you have found) might consider them if federal funding was available for those specific studies. Unfortunately, the NIH, CDC, and NIMH still don't show much interest in funding research into the biochemical pathways typical of autistic kids. Even more unfortunate, I don't see this changing any time soon, even if the Combatting Autism Act becomes law. The bulk of the dollars will continue going to genetics. Vance > I have stumbled across some things, some of them I posted here about, > that I believe might turn out to be of huge relevance in autism, and I > have been trying to get some doctors and researchers to look at those > issues more closely, or at least to get others interested and facilitate > research that way, but I have been patronised and ignored to death. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 Natasa, you are clearly the calcium channel guru in my book, medical degree or not. I suspect that DAN! docs get overwhelmed by all the science (just to a lesser degree than us parents) and struggle to keep up with all the new information. Also, most of them have such a busy clinical practice that it seems risky to them to spend much time on biochemical research. My fear is that the researchers who could reasonably do the experiments you propose (mostly the authors of the studies you have found) might consider them if federal funding was available for those specific studies. Unfortunately, the NIH, CDC, and NIMH still don't show much interest in funding research into the biochemical pathways typical of autistic kids. Even more unfortunate, I don't see this changing any time soon, even if the Combatting Autism Act becomes law. The bulk of the dollars will continue going to genetics. Vance > I have stumbled across some things, some of them I posted here about, > that I believe might turn out to be of huge relevance in autism, and I > have been trying to get some doctors and researchers to look at those > issues more closely, or at least to get others interested and facilitate > research that way, but I have been patronised and ignored to death. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Thank you, Vance! I totally agree re doctors and researchers. Maybe somewhere like CAN or even ARI would be the potential funding source, considering CAN funded that groundbreaking Vargas et al study last year. Just thinking/hoping out loud... Natasa > > > I have stumbled across some things, some of them I posted here about, > > that I believe might turn out to be of huge relevance in autism, and > I > > have been trying to get some doctors and researchers to look at those > > issues more closely, or at least to get others interested and > facilitate > > research that way, but I have been patronised and ignored to death. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Thank you, Vance! I totally agree re doctors and researchers. Maybe somewhere like CAN or even ARI would be the potential funding source, considering CAN funded that groundbreaking Vargas et al study last year. Just thinking/hoping out loud... Natasa > > > I have stumbled across some things, some of them I posted here about, > > that I believe might turn out to be of huge relevance in autism, and > I > > have been trying to get some doctors and researchers to look at those > > issues more closely, or at least to get others interested and > facilitate > > research that way, but I have been patronised and ignored to death. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Natasa, I 2nd Vance’s sentiments!! I thought you would like to know that I have been forwarding all sorts of information you have posted and e-mailed to me to other parents. All of which are very appreciative. I truly believe Calcium plays a much larger role than attention is paid to. Keep on trucking, the stuff you propose and information you find is priceless in my opinion. Take care, From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of natasa778 Sent: Sunday, August 13, 2006 5:30 AM mb12 valtrex Subject: Re: Parendotal Power Thank you, Vance! I totally agree re doctors and researchers. Maybe somewhere like CAN or even ARI would be the potential funding source, considering CAN funded that groundbreaking Vargas et al study last year. Just thinking/hoping out loud... Natasa > > Natasa, you are clearly the calcium channel guru in my book, medical > degree or not. I suspect that DAN! docs get overwhelmed by all the > science (just to a lesser degree than us parents) and struggle to keep > up with all the new information. Also, most of them have such a busy > clinical practice that it seems risky to them to spend much time on > biochemical research. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Natasa, I 2nd Vance’s sentiments!! I thought you would like to know that I have been forwarding all sorts of information you have posted and e-mailed to me to other parents. All of which are very appreciative. I truly believe Calcium plays a much larger role than attention is paid to. Keep on trucking, the stuff you propose and information you find is priceless in my opinion. Take care, From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of natasa778 Sent: Sunday, August 13, 2006 5:30 AM mb12 valtrex Subject: Re: Parendotal Power Thank you, Vance! I totally agree re doctors and researchers. Maybe somewhere like CAN or even ARI would be the potential funding source, considering CAN funded that groundbreaking Vargas et al study last year. Just thinking/hoping out loud... Natasa > > Natasa, you are clearly the calcium channel guru in my book, medical > degree or not. I suspect that DAN! docs get overwhelmed by all the > science (just to a lesser degree than us parents) and struggle to keep > up with all the new information. Also, most of them have such a busy > clinical practice that it seems risky to them to spend much time on > biochemical research. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 I'm wondering whether someone can refer me to the calcium channel research/info? Thanks. Re: Parendotal Power Thank you, Vance! I totally agree re doctors and researchers. Maybesomewhere like CAN or even ARI would be the potential funding source,considering CAN funded that groundbreaking Vargas et al study last year.Just thinking/hoping out loud...Natasa>> > I have stumbled across some things, some of them I posted hereabout,> > that I believe might turn out to be of huge relevance in autism, and> I> > have been trying to get some doctors and researchers to look atthose> > issues more closely, or at least to get others interested and> facilitate> > research that way, but I have been patronised and ignored to death.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 I'm wondering whether someone can refer me to the calcium channel research/info? Thanks. Re: Parendotal Power Thank you, Vance! I totally agree re doctors and researchers. Maybesomewhere like CAN or even ARI would be the potential funding source,considering CAN funded that groundbreaking Vargas et al study last year.Just thinking/hoping out loud...Natasa>> > I have stumbled across some things, some of them I posted hereabout,> > that I believe might turn out to be of huge relevance in autism, and> I> > have been trying to get some doctors and researchers to look atthose> > issues more closely, or at least to get others interested and> facilitate> > research that way, but I have been patronised and ignored to death.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 I'm wondering whether someone can refer me to the calcium channel research/info? Thanks. Re: Parendotal Power Thank you, Vance! I totally agree re doctors and researchers. Maybesomewhere like CAN or even ARI would be the potential funding source,considering CAN funded that groundbreaking Vargas et al study last year.Just thinking/hoping out loud...Natasa>> > I have stumbled across some things, some of them I posted hereabout,> > that I believe might turn out to be of huge relevance in autism, and> I> > have been trying to get some doctors and researchers to look atthose> > issues more closely, or at least to get others interested and> facilitate> > research that way, but I have been patronised and ignored to death.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Lorna, if you pm me I can forward some info and abstracts to you. my email address, without spaces: neno @ dalmaholidays . co . uk Natasa > > > > > I have stumbled across some things, some of them I posted here > about, > > > that I believe might turn out to be of huge relevance in autism, and > > I > > > have been trying to get some doctors and researchers to look at > those > > > issues more closely, or at least to get others interested and > > facilitate > > > research that way, but I have been patronised and ignored to death. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Lorna, if you pm me I can forward some info and abstracts to you. my email address, without spaces: neno @ dalmaholidays . co . uk Natasa > > > > > I have stumbled across some things, some of them I posted here > about, > > > that I believe might turn out to be of huge relevance in autism, and > > I > > > have been trying to get some doctors and researchers to look at > those > > > issues more closely, or at least to get others interested and > > facilitate > > > research that way, but I have been patronised and ignored to death. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Lorna, if you pm me I can forward some info and abstracts to you. my email address, without spaces: neno @ dalmaholidays . co . uk Natasa > > > > > I have stumbled across some things, some of them I posted here > about, > > > that I believe might turn out to be of huge relevance in autism, and > > I > > > have been trying to get some doctors and researchers to look at > those > > > issues more closely, or at least to get others interested and > > facilitate > > > research that way, but I have been patronised and ignored to death. > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.