Guest guest Posted May 8, 2010 Report Share Posted May 8, 2010 IVIG is not pleasant, so prepare your self...not that any of this is, but They typically vomit for a few days after the infusion and feel terrible. Good Luck to you.  Sincerely Noel From: Umesh <umeshmadhav@...> Subject: Re: Getting the Word Out Date: Saturday, May 8, 2010, 8:49 AM  Just wanted to let you know that until now I have worked with 2 DAN Drs, but am planning to see Dr G soon. The DAN Dr. I am seeing now (one of the big shots) feels that autoimmunity/ immune dysfunction is the issue with my child (and in fact with most with the 'A' word), but that there is no conclusive evidence to prove so. The main treatment he suggests (he says this is the only demonstrated one) is IVIG. So, it doesn't seem like DAN and may be talking about 2 completely different things. The treatment protocol is where a lot of disagreement is. Regards, Umesh > > Hi. >  > I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune. >  > He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids. >  > My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read? >  >  Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how > a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is? >  > I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first. >  > I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important. >  >  > Lynn >  >  >  >  >  > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2010 Report Share Posted May 8, 2010 I have read that IVIG is extremely expensive. I wonder if this is done by any Canadian doctors for /asd..? I can’t see MSI approving this procedure for kids. Is it approved and performed by Dr. G? From: [mailto: ] On Behalf Of NOEL SCHNEIDER Sent: May-08-10 3:49 PM Subject: Re: Re: Getting the Word Out IVIG is not pleasant, so prepare your self...not that any of this is, but They typically vomit for a few days after the infusion and feel terrible. Good Luck to you. Sincerely Noel From: Umesh <umeshmadhav@... <mailto:umeshmadhav%40> > Subject: Re: Getting the Word Out <mailto:%40> Date: Saturday, May 8, 2010, 8:49 AM Just wanted to let you know that until now I have worked with 2 DAN Drs, but am planning to see Dr G soon. The DAN Dr. I am seeing now (one of the big shots) feels that autoimmunity/ immune dysfunction is the issue with my child (and in fact with most with the 'A' word), but that there is no conclusive evidence to prove so. The main treatment he suggests (he says this is the only demonstrated one) is IVIG. So, it doesn't seem like DAN and may be talking about 2 completely different things. The treatment protocol is where a lot of disagreement is. Regards, Umesh > > Hi. > > I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune. > > He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids. > > My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read? > > Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how > a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is? > > I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first. > > I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important. > > > Lynn > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2010 Report Share Posted May 8, 2010 Dr g is not a fan of ivig not sure about msi covering it is about a 6 to 7 hr infusion as well....most insurance require pre auth On Sat May 8th, 2010 12:07 PM PDT and Freeman wrote: >I have read that IVIG is extremely expensive. I wonder if this is done by any Canadian doctors for /asd..? I can’t see MSI approving this procedure for kids. Is it approved and performed by Dr. G? > > > >From: [mailto: ] On Behalf Of NOEL SCHNEIDER >Sent: May-08-10 3:49 PM > >Subject: Re: Re: Getting the Word Out > > > > > >IVIG is not pleasant, so prepare your self...not that any of this is, but They typically vomit for a few days after the infusion and feel terrible. Good Luck to you. > > Sincerely Noel > > > >From: Umesh <umeshmadhav@... <mailto:umeshmadhav%40> > >Subject: Re: Getting the Word Out > <mailto:%40> >Date: Saturday, May 8, 2010, 8:49 AM > > > >Just wanted to let you know that until now I have worked with 2 DAN Drs, but am planning to see Dr G soon. The DAN Dr. I am seeing now (one of the big shots) feels that autoimmunity/ immune dysfunction is the issue with my child (and in fact with most with the 'A' word), but that there is no conclusive evidence to prove so. The main treatment he suggests (he says this is the only demonstrated one) is IVIG. So, it doesn't seem like DAN and may be talking about 2 completely different things. The treatment protocol is where a lot of disagreement is. > >Regards, > >Umesh > >> >> Hi. >> >> I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune. >> >> He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids. >> >> My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read? >> >> Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how >> a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is? >> >> I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first. >> >> I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important. >> >> >> Lynn >> >> >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2010 Report Share Posted May 8, 2010 Umesh (or anyone who has had experience with IVIG)- Just out of curiosity, have done any IVIG with your child? This treatment has ALWAYS been in the back of our mind as a good path for our son! The only response we get from the docs is " it is too expensive and insurance won't pay for it! " ......well, what HASN'T been expensive while treating our son?!! Geez! Plus, I have also read that IVIG is a once a month treatment for a year! While GG (gamaglobulin) shots are something you have to keep up a loong time, due to the short amount of time it stays in the body (although, I do know someone who swears by the positive effects of GG shots on their child!!)! Have a good one! - Sent on the Sprint® Now Network from my BlackBerry® Re: Getting the Word Out Date: Saturday, May 8, 2010, 8:49 AM  Just wanted to let you know that until now I have worked with 2 DAN Drs, but am planning to see Dr G soon. The DAN Dr. I am seeing now (one of the big shots) feels that autoimmunity/ immune dysfunction is the issue with my child (and in fact with most with the 'A' word), but that there is no conclusive evidence to prove so. The main treatment he suggests (he says this is the only demonstrated one) is IVIG. So, it doesn't seem like DAN and may be talking about 2 completely different things. The treatment protocol is where a lot of disagreement is. Regards, Umesh > > Hi. >  > I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune. >  > He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids. >  > My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read? >  >  Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how > a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is? >  > I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first. >  > I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important. >  >  > Lynn >  >  >  >  >  > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2010 Report Share Posted May 8, 2010 We did it for a yr it was terrible major headaches vomiting etc it does not last that s why u do it every month some insurance plans will cover if certain criteria is met On Sat May 8th, 2010 2:53 PM PDT erikadyan71@... wrote: >Umesh (or anyone who has had experience with IVIG)- > >Just out of curiosity, have done any IVIG with your child? This treatment has ALWAYS been in the back of our mind as a good path for our son! The only response we get from the docs is " it is too expensive and insurance won't pay for it! " ......well, what HASN'T been expensive while treating our son?!! Geez! Plus, I have also read that IVIG is a once a month treatment for a year! While GG (gamaglobulin) shots are something you have to keep up a loong time, due to the short amount of time it stays in the body (although, I do know someone who swears by the positive effects of GG shots on their child!!)! > >Have a good one! > >- >Sent on the Sprint® Now Network from my BlackBerry® > > Re: Getting the Word Out > >Date: Saturday, May 8, 2010, 8:49 AM > > > > > > >Just wanted to let you know that until now I have worked with 2 DAN Drs, but am planning to see Dr G soon. The DAN Dr. I am seeing now (one of the big shots) feels that autoimmunity/ immune dysfunction is the issue with my child (and in fact with most with the 'A' word), but that there is no conclusive evidence to prove so. The main treatment he suggests (he says this is the only demonstrated one) is IVIG. So, it doesn't seem like DAN and may be talking about 2 completely different things. The treatment protocol is where a lot of disagreement is. > >Regards, > >Umesh > >> >> Hi. >> >> I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune. >> >> He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids. >> >> My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read? >> >> Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how >> a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is? >> >> I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first. >> >> I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important. >> >> >> Lynn >> >> >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2010 Report Share Posted May 8, 2010 Under what circumstances are doctors permitted to perform IVIG? What criteria must be met first before it can be approved by insurance or MSI? From: [mailto: ] On Behalf Of erikadyan71@... Sent: May-08-10 6:53 PM Subject: Re: Re: Getting the Word Out Umesh (or anyone who has had experience with IVIG)- Just out of curiosity, have done any IVIG with your child? This treatment has ALWAYS been in the back of our mind as a good path for our son! The only response we get from the docs is " it is too expensive and insurance won't pay for it! " ......well, what HASN'T been expensive while treating our son?!! Geez! Plus, I have also read that IVIG is a once a month treatment for a year! While GG (gamaglobulin) shots are something you have to keep up a loong time, due to the short amount of time it stays in the body (although, I do know someone who swears by the positive effects of GG shots on their child!!)! Have a good one! - Sent on the Sprint® Now Network from my BlackBerry® Re: Getting the Word Out <mailto:%40> Date: Saturday, May 8, 2010, 8:49 AM Just wanted to let you know that until now I have worked with 2 DAN Drs, but am planning to see Dr G soon. The DAN Dr. I am seeing now (one of the big shots) feels that autoimmunity/ immune dysfunction is the issue with my child (and in fact with most with the 'A' word), but that there is no conclusive evidence to prove so. The main treatment he suggests (he says this is the only demonstrated one) is IVIG. So, it doesn't seem like DAN and may be talking about 2 completely different things. The treatment protocol is where a lot of disagreement is. Regards, Umesh > > Hi. > > I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune. > > He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids. > > My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read? > > Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how > a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is? > > I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first. > > I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important. > > > Lynn > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2010 Report Share Posted May 8, 2010 Did it benefit your child at all? Thanks. Sheryl Sent from my iPhone On May 8, 2010, at 3:05 PM, NOEL SCHNEIDER <schneid99@...> wrote: We did it for a yr it was terrible major headaches vomiting etc it does not last that s why u do it every month some insurance plans will cover if certain criteria is met On Sat May 8th, 2010 2:53 PM PDT erikadyan71@... wrote: >Umesh (or anyone who has had experience with IVIG)- > >Just out of curiosity, have done any IVIG with your child? This treatment has ALWAYS been in the back of our mind as a good path for our son! The only response we get from the docs is " it is too expensive and insurance won't pay for it! " ......well, what HASN'T been expensive while treating our son?!! Geez! Plus, I have also read that IVIG is a once a month treatment for a year! While GG (gamaglobulin) shots are something you have to keep up a loong time, due to the short amount of time it stays in the body (although, I do know someone who swears by the positive effects of GG shots on their child!!)! > >Have a good one! > >- >Sent on the Sprint® Now Network from my BlackBerry® > > Re: Getting the Word Out > >Date: Saturday, May 8, 2010, 8:49 AM > > > > > > >Just wanted to let you know that until now I have worked with 2 DAN Drs, but am planning to see Dr G soon. The DAN Dr. I am seeing now (one of the big shots) feels that autoimmunity/ immune dysfunction is the issue with my child (and in fact with most with the 'A' word), but that there is no conclusive evidence to prove so. The main treatment he suggests (he says this is the only demonstrated one) is IVIG. So, it doesn't seem like DAN and may be talking about 2 completely different things. The treatment protocol is where a lot of disagreement is. > >Regards, > >Umesh > >> >> Hi. >> >> I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune. >> >> He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids. >> >> My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read? >> >> Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how >> a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is? >> >> I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first. >> >> I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important. >> >> >> Lynn >> >> >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2010 Report Share Posted May 8, 2010 He didn t get sick as often but the side effects were not worth it immunovir has helped the most ..I didn t notice anythg behavior wise. We hve been on immunovir for a yr now and nk cells hve increased and low igg is way better my son is 5 now On Sat May 8th, 2010 3:16 PM PDT Sheryl wrote: >Did it benefit your child at all? >Thanks. >Sheryl > >Sent from my iPhone > >On May 8, 2010, at 3:05 PM, NOEL SCHNEIDER <schneid99@...> wrote: > >We did it for a yr it was terrible major headaches vomiting etc it does not last that s why u do it every month some insurance plans will cover if certain criteria is met > >On Sat May 8th, 2010 2:53 PM PDT erikadyan71@... wrote: > >>Umesh (or anyone who has had experience with IVIG)- >> >>Just out of curiosity, have done any IVIG with your child? This treatment has ALWAYS been in the back of our mind as a good path for our son! The only response we get from the docs is " it is too expensive and insurance won't pay for it! " ......well, what HASN'T been expensive while treating our son?!! Geez! Plus, I have also read that IVIG is a once a month treatment for a year! While GG (gamaglobulin) shots are something you have to keep up a loong time, due to the short amount of time it stays in the body (although, I do know someone who swears by the positive effects of GG shots on their child!!)! >> >>Have a good one! >> >>- >>Sent on the Sprint® Now Network from my BlackBerry® >> >> Re: Getting the Word Out >> >>Date: Saturday, May 8, 2010, 8:49 AM >> >> >> >> >> >> >>Just wanted to let you know that until now I have worked with 2 DAN Drs, but am planning to see Dr G soon. The DAN Dr. I am seeing now (one of the big shots) feels that autoimmunity/ immune dysfunction is the issue with my child (and in fact with most with the 'A' word), but that there is no conclusive evidence to prove so. The main treatment he suggests (he says this is the only demonstrated one) is IVIG. So, it doesn't seem like DAN and may be talking about 2 completely different things. The treatment protocol is where a lot of disagreement is. >> >>Regards, >> >>Umesh >> >>> >>> Hi. >>> >>> I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune. >>> >>> He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids. >>> >>> My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read? >>> >>> Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how >>> a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is? >>> >>> I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first. >>> >>> I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important. >>> >>> >>> Lynn >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2010 Report Share Posted May 8, 2010 , My son has been getting IVIG monthly for about a year. No major wows but I feel that it's been worth trying. He only threw up after the first infusion and has been fine with it after each subsequent time--in fact he seems happier and has more energy. Our doctor worked with insurance to get it mostly covered. If you haven't already, have an immunological blood panel run. For example, although my son got his vaccine against HepB according to his labs he has no immunity to it--and on this basis insurance has to cover his IVIG meds which are about $5K a month! Not sure how much longer to keep this up though as the previous posts are right, it is not pleasant and although it's been approved of by DrG he doesn't think it's ultimately going to do much for him. > >>> > >>> Hi. > >>> > >>> I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune. > >>> > >>> He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids. > >>> > >>> My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read? > >>> > >>> Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how > >>> a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is? > >>> > >>> I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first. > >>> > >>> I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important. > >>> > >>> > >>> Lynn > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2010 Report Share Posted May 8, 2010 Thanks for the feedback. Sounds like IVIG is brutal. Sheryl Sent from my iPhone On May 8, 2010, at 3:47 PM, NOEL SCHNEIDER <schneid99@...> wrote: He didn t get sick as often but the side effects were not worth it immunovir has helped the most ..I didn t notice anythg behavior wise. We hve been on immunovir for a yr now and nk cells hve increased and low igg is way better my son is 5 now On Sat May 8th, 2010 3:16 PM PDT Sheryl wrote: >Did it benefit your child at all? >Thanks. >Sheryl > >Sent from my iPhone > >On May 8, 2010, at 3:05 PM, NOEL SCHNEIDER <schneid99@...> wrote: > >We did it for a yr it was terrible major headaches vomiting etc it does not last that s why u do it every month some insurance plans will cover if certain criteria is met > >On Sat May 8th, 2010 2:53 PM PDT erikadyan71@... wrote: > >>Umesh (or anyone who has had experience with IVIG)- >> >>Just out of curiosity, have done any IVIG with your child? This treatment has ALWAYS been in the back of our mind as a good path for our son! The only response we get from the docs is " it is too expensive and insurance won't pay for it! " ......well, what HASN'T been expensive while treating our son?!! Geez! Plus, I have also read that IVIG is a once a month treatment for a year! While GG (gamaglobulin) shots are something you have to keep up a loong time, due to the short amount of time it stays in the body (although, I do know someone who swears by the positive effects of GG shots on their child!!)! >> >>Have a good one! >> >>- >>Sent on the Sprint® Now Network from my BlackBerry® >> >> Re: Getting the Word Out >> >>Date: Saturday, May 8, 2010, 8:49 AM >> >> >> >> >> >> >>Just wanted to let you know that until now I have worked with 2 DAN Drs, but am planning to see Dr G soon. The DAN Dr. I am seeing now (one of the big shots) feels that autoimmunity/ immune dysfunction is the issue with my child (and in fact with most with the 'A' word), but that there is no conclusive evidence to prove so. The main treatment he suggests (he says this is the only demonstrated one) is IVIG. So, it doesn't seem like DAN and may be talking about 2 completely different things. The treatment protocol is where a lot of disagreement is. >> >>Regards, >> >>Umesh >> >>> >>> Hi. >>> >>> I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune. >>> >>> He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids. >>> >>> My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read? >>> >>> Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how >>> a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is? >>> >>> I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first. >>> >>> I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important. >>> >>> >>> Lynn >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2010 Report Share Posted May 8, 2010 My dad does IVIG; he's a patient of Dr. G's but his neuro was the one that prescribed the IVIG. He doesn't get sick, but it does exhaust him. So far, after five or six infusions, we haven't really seen any positives. All the best, Robyn ________________________________ From: NOEL SCHNEIDER <schneid99@...> Sent: Sat, May 8, 2010 11:49:07 AM Subject: Re: Re: Getting the Word Out IVIG is not pleasant, so prepare your self...not that any of this is, but They typically vomit for a few days after the infusion and feel terrible. Good Luck to you. Sincerely Noel From: Umesh <umeshmadhav> Subject: Re: Getting the Word Out groups (DOT) com Date: Saturday, May 8, 2010, 8:49 AM Just wanted to let you know that until now I have worked with 2 DAN Drs, but am planning to see Dr G soon. The DAN Dr. I am seeing now (one of the big shots) feels that autoimmunity/ immune dysfunction is the issue with my child (and in fact with most with the 'A' word), but that there is no conclusive evidence to prove so. The main treatment he suggests (he says this is the only demonstrated one) is IVIG. So, it doesn't seem like DAN and may be talking about 2 completely different things. The treatment protocol is where a lot of disagreement is. Regards, Umesh > > Hi. > > I just had my phone conversation with Dr. Goldberg. He was not as upbeat because he said that he previously met with people who he described as higher up that told him flat out forget about it with his efforts with immune modulators. I am going by memory here, but basically told him that there are a lot of people making money off of autism now and that they are going to stand in the way. Basically, there are a lot of people happy about the way things are right now and parents haven't come to a consensus because a lot of parents are doing DAN and a lot are going with Neuroimmune. > > He of course is concerned for the future of our kids and I am concerned as a parent, because I think if we do not come up with immune modulators that are used as a standard protocol for kids classified with the " A " word, when he is gone and I am gone, how is my son going to be treated for this disease as an adult? Does he have to stop taking what has worked for him all these years because other doctors do not know or will not follow this treatment? I am scared for him and the rest of our kids. > > My reason for writing to the group is to come up with some ideas that work. One of my ideas is identifying what doctors throughout the country are on board now and then trying to get the word out to others. Does anyone know what doctors read? > > Another idea was to have some sort of publication that we could send by email or mail to targeted doctors or organizations. Also, I am a total neophyte, but does anyone know how much money Dr. Goldberg needs to raise for trials? My last question is in regards to how > a pharmaceutical company decides to come up with new drugs? Does anyone know what/who the push is? > > I am from the East Coast and I have hit a wall trying to get parents out here to understand Dr. Goldberg's efforts. However, maybe it is better to get to the doctors first. > > I know we are all busy trying to fix our kids and be their parents, therapists, playcoaches, etc, but I figured I would write to see what this group thinks because this issue is so important. > > > Lynn > > > > > > > > > > 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.