Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Like others have said... " one man's food is another man's poison " . This is true for all things in life! Lots of kids have done very well with Valtrex, however, it wrecked my son. His clostridia and yeast got WAY out of control, even while on medications to control the yeast. He had started to do well, then took a nose dive. But, I will never say that Valtrex is worthless - it just wasn't the right approach with my son. I do believe viruses, bacteria and yeast need to be addressed at the same time, using the method that works best for that person. We have just done 5 dives of soft chamber HBOT, and I am LOVING the changes I am seeing in my son! We are also doing Homeopathy, and I believe some of the progress is due to that, but the most dramatic results have been on days when we have dives. So far, so good... I think it is important that you are addressing underlying issues such as bacteria (STREP or whatever) while you are doing things like this. I also believe in balance. If you focus on viruses, you will get more of yeast or bacteria. Someone from another group made a comment that I found interesting. She said that with her child with Lyme, she would solve one problem (virus/bacteria, etc...) and another would pop up. This kept happening over and over again. It was like there were layers that had to be dealt with and each layer would come up as the body was ready to deal with it. Now her child is doing well. I am also intrigued with the Valkion too. I had read about that before, and I wonder if it might be a better way to get the same results that we are getting. Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Like others have said... " one man's food is another man's poison " . This is true for all things in life! Lots of kids have done very well with Valtrex, however, it wrecked my son. His clostridia and yeast got WAY out of control, even while on medications to control the yeast. He had started to do well, then took a nose dive. But, I will never say that Valtrex is worthless - it just wasn't the right approach with my son. I do believe viruses, bacteria and yeast need to be addressed at the same time, using the method that works best for that person. We have just done 5 dives of soft chamber HBOT, and I am LOVING the changes I am seeing in my son! We are also doing Homeopathy, and I believe some of the progress is due to that, but the most dramatic results have been on days when we have dives. So far, so good... I think it is important that you are addressing underlying issues such as bacteria (STREP or whatever) while you are doing things like this. I also believe in balance. If you focus on viruses, you will get more of yeast or bacteria. Someone from another group made a comment that I found interesting. She said that with her child with Lyme, she would solve one problem (virus/bacteria, etc...) and another would pop up. This kept happening over and over again. It was like there were layers that had to be dealt with and each layer would come up as the body was ready to deal with it. Now her child is doing well. I am also intrigued with the Valkion too. I had read about that before, and I wonder if it might be a better way to get the same results that we are getting. Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 we saw some small gains during the last 10 of the 40 set of treaments but after stopping, it kinda tapered off... nothing to write home about. > > > > We saw no gains from HBOT> > > > > ??Is HBOT worth it??? > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be > no > > change in him after IVIG..supplements..she suggested HBOT..I'd > like > > tohear from others if this is worth the $$$ or just a way to get > folks > > to use her chamber in her office? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 we saw some small gains during the last 10 of the 40 set of treaments but after stopping, it kinda tapered off... nothing to write home about. > > > > We saw no gains from HBOT> > > > > ??Is HBOT worth it??? > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be > no > > change in him after IVIG..supplements..she suggested HBOT..I'd > like > > tohear from others if this is worth the $$$ or just a way to get > folks > > to use her chamber in her office? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 we saw some small gains during the last 10 of the 40 set of treaments but after stopping, it kinda tapered off... nothing to write home about. > > > > We saw no gains from HBOT> > > > > ??Is HBOT worth it??? > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be > no > > change in him after IVIG..supplements..she suggested HBOT..I'd > like > > tohear from others if this is worth the $$$ or just a way to get > folks > > to use her chamber in her office? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 When you begin with the premise that my child is sick with an autoimmune disease or any type of disease currently undiagnosed...it changes everything. I really encourage ALL parents to look at the diagnostic criteria for autism and if it isn't a match for your child BELIEVE that it isn't a match. Keep it if it gets you services but do not BELIEVE it - is is bullshit. A head cold is not leukemia, a yeast infection isn't a bacterial one, diagnoses shouldnot be allowed to be flexible or ever changing or broad.... IF your kid had cancer and doctors were telling you it was leprosy, incurable, and therefore any whackadoo and expensive thing they want to try is suddenly fair game - you would freak... " but he has never even had a sore? How can this be leprosy, and in the US at this time? That's just a crazy diagnosis... " Why aren't more saying that this, with these numbers, cannot be anything other than ILLNESS. OUr kids need medical treatment not psychiatric ones. Once he read me the diagnostic criteria for autism it became apparent that Matt doesn't have it, never had it, and has had severe gastritis, a clostridia infection based on lab work and not even Great Plains lab stuff - quest diagnostics. He also has markers for illness and none for autism or any other neurological disease...he cannot be the only one. It is outrageous. We were given our diagnosis last year and FINALLY we are being seen by a doctor who bothers to go over his medical history line for line, shot for shot... " he should never been given that vaccine while on oxygen in the NICU at Tarzana - that is not the cause of all this, but it is just bad medicine. 8 vaccines in one day - I never did this or do this in my practice. I never give the chicken pox one either or a few of the others. " We really liked him and we could see why others did not and do not-esp if they believe in certain natural interventions or alternative therapies that he will not allow since he wants to avoid any red herring recoveries...my friend's boy really, truly, looked great and did well in K with some assistance, in 1st without any, and as I have mentioned there are issues now between 2nd and third grade, and along the timeline Dr. G mentioned. The fact that he has no peripheral vision at this time is in line with at least one part of the body that he says the viruses attack when not treated specifically in kids wth viral illnesses. Its something to think about... As for treatments, we are evaluating them at this time based on how many kids they have worked for and how fully recovered those kids are...it is tough bc I now realize a kid can look pretty good, but have some serious issues not apparent to the eye or even in a conversation...how many affected adults , functional but still quite ill - are there out there after all? That is why we have dropped Pfeiffer Treatment Center, we are still considering chelation, we are putting our hopes in the antiviral angle for the time being, and we are very hesitant about HBOT. At the TACA meetings I have been to here is S Cal I just see so many parents battling issues that support Goldberg's thesis. We are taking the research paper that he produced with s Hopkins to the head of the FDA for some expert analysis of his ideas and his treatment protocols. I will let everyone know the feedback...all I know is that when we were megadosing with the vits etc we thought our boy was getting better too, and discounted the role the antiviral and other rxs had in what we were seeing...and we thought incorrectly that when we stopped seeing stuff the RXs were no longer working...we lost precious gains and time and money by pulling those rxs and by not finding our way to an experienced in immune issues DOCTOR sooner. This is the first dr that has bothered to examine Matt, tongue, eyes, ears, etc and look at his whole pic, as a PEDIATRICIAN to a sick little boy, not bothering to talk about neurologists and the rest bc he believes that we are dealing with illness here - the neurological stuff and even the gut stuff is the consequence, not the cause. The NIDS diet that he has is NOT a healing one, so if kids are improving to the point of long term recovery in his care it sure isn't bc of Wonderbread with some Jiffy on it... " when you have cancer and diabetes, deal with the cancer first...and keep the diabetes in mind, but it cannot be your focus " ...and the other thing we really liked is that when he says recovered it has to mean based on the blood, the brain, the immune system fully up and functioning, and it all has to LAST....he mde the point that you can be weeks from death with cancer in you and not even know it until the tipping point and the moment of diagnosis and then the decline is so rapid. The same is true for our kids, per him. If a DAN says he has recovered a child, Goldberg says show me the immune panels and the scans please bc only then will I agree that this kid is going to be healthy long term and okay. And I should not see any bloated bellies, stool issues, kidney problems, big allergies and dark circles and puffy eyes... He said that getting these kids into Kindergarten and ist is not a big deal, and it does not mean recovered. Where is that child in 2nd grade and then on junior high and onward from that point - that is when the brain damage reveals itself, per him. As a k teacher, I have to say I am with him on that point...K and ist with no aid does not mean to me what I think it means to so many other parents...I think sick kids could slip through the cracks and my own friend whose child is now going into third - the c and d marks are happening, he is still on the Pfieffer maintenance stuff, and his eyes are NOT okay. Golberg wants to prove among other things that these young men who drop dead during their sporting events do so bc of organ damage from viruses,the same ones that are derailing our children to a large degree. He thinks 99.9% of what we are calling autism out there is really yeast and bacterial infections that result from viral infections and metals issues are because of the infections - those metals issues go awy, per him when the immune system is restored. If he is right, the scale on which we have all been ripped off is staggering and the money being made off of our kids is appalling...a dollar a minute, no insurance taken, piles of vits and supps...and he said that all those protocols have been DONE before for the chronic fatigue syndrome and fibromyalgia crowd and failed...so how can they work on our kids who are even more vulnerable, unable to follow diet and megadose protocols safely? He was one angry dude folks, and incredibly gentle and lovely to Matt and genuinely, I think, concerned for his health and well being and quality of life....can the same be said of the person selling you those vits, HBOT, or other therapies? The other thing about Dr. G is that I saw no indication that he was making a mint in the autism business, and I appreciate that about him. I don't know if he is right or not. I am going to give his stuff over to those who might be able to tell me if he is or not...but if he is, your kid does not have autism, is sick, needs and deserves medical care covered by insurance and provided by medical doctors who MUST be held accountable if he or she does not improve or worse, is injured in their care...all the best to everyone trying to navigate this crazy illness. Di > > > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be no > > > > change in him after IVIG..supplements..she suggested HBOT..I'd > > like > > > > tohear from others if this is worth the $$$ or just a way to get > > > folks > > > > to use her chamber in her office? > > > > > > > > > > > > > We did 200 dives of soft chamber mild HBOT 1-1 1/2 hrs./day he was > > > doing great more eye contact, awareness better, skin color good,a > > happy > > > child then started valtrex while doing HBOT he then got chronic > > strep > > > (2-3 different kinds of strep in his gut. > > > now he has all symptoms of PANDAS he continued getting worse we > > found > > > out oxygen was feeding the strep so we immediately stopped. Now he > > is > > > on zithro. > > > How many IVIG treatments did he have? I read sometimes several > > > treatments before seeing positives with some kids. > > > We are staying away from the HBOT while battling strep. > > > Carole > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 When you begin with the premise that my child is sick with an autoimmune disease or any type of disease currently undiagnosed...it changes everything. I really encourage ALL parents to look at the diagnostic criteria for autism and if it isn't a match for your child BELIEVE that it isn't a match. Keep it if it gets you services but do not BELIEVE it - is is bullshit. A head cold is not leukemia, a yeast infection isn't a bacterial one, diagnoses shouldnot be allowed to be flexible or ever changing or broad.... IF your kid had cancer and doctors were telling you it was leprosy, incurable, and therefore any whackadoo and expensive thing they want to try is suddenly fair game - you would freak... " but he has never even had a sore? How can this be leprosy, and in the US at this time? That's just a crazy diagnosis... " Why aren't more saying that this, with these numbers, cannot be anything other than ILLNESS. OUr kids need medical treatment not psychiatric ones. Once he read me the diagnostic criteria for autism it became apparent that Matt doesn't have it, never had it, and has had severe gastritis, a clostridia infection based on lab work and not even Great Plains lab stuff - quest diagnostics. He also has markers for illness and none for autism or any other neurological disease...he cannot be the only one. It is outrageous. We were given our diagnosis last year and FINALLY we are being seen by a doctor who bothers to go over his medical history line for line, shot for shot... " he should never been given that vaccine while on oxygen in the NICU at Tarzana - that is not the cause of all this, but it is just bad medicine. 8 vaccines in one day - I never did this or do this in my practice. I never give the chicken pox one either or a few of the others. " We really liked him and we could see why others did not and do not-esp if they believe in certain natural interventions or alternative therapies that he will not allow since he wants to avoid any red herring recoveries...my friend's boy really, truly, looked great and did well in K with some assistance, in 1st without any, and as I have mentioned there are issues now between 2nd and third grade, and along the timeline Dr. G mentioned. The fact that he has no peripheral vision at this time is in line with at least one part of the body that he says the viruses attack when not treated specifically in kids wth viral illnesses. Its something to think about... As for treatments, we are evaluating them at this time based on how many kids they have worked for and how fully recovered those kids are...it is tough bc I now realize a kid can look pretty good, but have some serious issues not apparent to the eye or even in a conversation...how many affected adults , functional but still quite ill - are there out there after all? That is why we have dropped Pfeiffer Treatment Center, we are still considering chelation, we are putting our hopes in the antiviral angle for the time being, and we are very hesitant about HBOT. At the TACA meetings I have been to here is S Cal I just see so many parents battling issues that support Goldberg's thesis. We are taking the research paper that he produced with s Hopkins to the head of the FDA for some expert analysis of his ideas and his treatment protocols. I will let everyone know the feedback...all I know is that when we were megadosing with the vits etc we thought our boy was getting better too, and discounted the role the antiviral and other rxs had in what we were seeing...and we thought incorrectly that when we stopped seeing stuff the RXs were no longer working...we lost precious gains and time and money by pulling those rxs and by not finding our way to an experienced in immune issues DOCTOR sooner. This is the first dr that has bothered to examine Matt, tongue, eyes, ears, etc and look at his whole pic, as a PEDIATRICIAN to a sick little boy, not bothering to talk about neurologists and the rest bc he believes that we are dealing with illness here - the neurological stuff and even the gut stuff is the consequence, not the cause. The NIDS diet that he has is NOT a healing one, so if kids are improving to the point of long term recovery in his care it sure isn't bc of Wonderbread with some Jiffy on it... " when you have cancer and diabetes, deal with the cancer first...and keep the diabetes in mind, but it cannot be your focus " ...and the other thing we really liked is that when he says recovered it has to mean based on the blood, the brain, the immune system fully up and functioning, and it all has to LAST....he mde the point that you can be weeks from death with cancer in you and not even know it until the tipping point and the moment of diagnosis and then the decline is so rapid. The same is true for our kids, per him. If a DAN says he has recovered a child, Goldberg says show me the immune panels and the scans please bc only then will I agree that this kid is going to be healthy long term and okay. And I should not see any bloated bellies, stool issues, kidney problems, big allergies and dark circles and puffy eyes... He said that getting these kids into Kindergarten and ist is not a big deal, and it does not mean recovered. Where is that child in 2nd grade and then on junior high and onward from that point - that is when the brain damage reveals itself, per him. As a k teacher, I have to say I am with him on that point...K and ist with no aid does not mean to me what I think it means to so many other parents...I think sick kids could slip through the cracks and my own friend whose child is now going into third - the c and d marks are happening, he is still on the Pfieffer maintenance stuff, and his eyes are NOT okay. Golberg wants to prove among other things that these young men who drop dead during their sporting events do so bc of organ damage from viruses,the same ones that are derailing our children to a large degree. He thinks 99.9% of what we are calling autism out there is really yeast and bacterial infections that result from viral infections and metals issues are because of the infections - those metals issues go awy, per him when the immune system is restored. If he is right, the scale on which we have all been ripped off is staggering and the money being made off of our kids is appalling...a dollar a minute, no insurance taken, piles of vits and supps...and he said that all those protocols have been DONE before for the chronic fatigue syndrome and fibromyalgia crowd and failed...so how can they work on our kids who are even more vulnerable, unable to follow diet and megadose protocols safely? He was one angry dude folks, and incredibly gentle and lovely to Matt and genuinely, I think, concerned for his health and well being and quality of life....can the same be said of the person selling you those vits, HBOT, or other therapies? The other thing about Dr. G is that I saw no indication that he was making a mint in the autism business, and I appreciate that about him. I don't know if he is right or not. I am going to give his stuff over to those who might be able to tell me if he is or not...but if he is, your kid does not have autism, is sick, needs and deserves medical care covered by insurance and provided by medical doctors who MUST be held accountable if he or she does not improve or worse, is injured in their care...all the best to everyone trying to navigate this crazy illness. Di > > > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be no > > > > change in him after IVIG..supplements..she suggested HBOT..I'd > > like > > > > tohear from others if this is worth the $$$ or just a way to get > > > folks > > > > to use her chamber in her office? > > > > > > > > > > > > > We did 200 dives of soft chamber mild HBOT 1-1 1/2 hrs./day he was > > > doing great more eye contact, awareness better, skin color good,a > > happy > > > child then started valtrex while doing HBOT he then got chronic > > strep > > > (2-3 different kinds of strep in his gut. > > > now he has all symptoms of PANDAS he continued getting worse we > > found > > > out oxygen was feeding the strep so we immediately stopped. Now he > > is > > > on zithro. > > > How many IVIG treatments did he have? I read sometimes several > > > treatments before seeing positives with some kids. > > > We are staying away from the HBOT while battling strep. > > > Carole > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 When you begin with the premise that my child is sick with an autoimmune disease or any type of disease currently undiagnosed...it changes everything. I really encourage ALL parents to look at the diagnostic criteria for autism and if it isn't a match for your child BELIEVE that it isn't a match. Keep it if it gets you services but do not BELIEVE it - is is bullshit. A head cold is not leukemia, a yeast infection isn't a bacterial one, diagnoses shouldnot be allowed to be flexible or ever changing or broad.... IF your kid had cancer and doctors were telling you it was leprosy, incurable, and therefore any whackadoo and expensive thing they want to try is suddenly fair game - you would freak... " but he has never even had a sore? How can this be leprosy, and in the US at this time? That's just a crazy diagnosis... " Why aren't more saying that this, with these numbers, cannot be anything other than ILLNESS. OUr kids need medical treatment not psychiatric ones. Once he read me the diagnostic criteria for autism it became apparent that Matt doesn't have it, never had it, and has had severe gastritis, a clostridia infection based on lab work and not even Great Plains lab stuff - quest diagnostics. He also has markers for illness and none for autism or any other neurological disease...he cannot be the only one. It is outrageous. We were given our diagnosis last year and FINALLY we are being seen by a doctor who bothers to go over his medical history line for line, shot for shot... " he should never been given that vaccine while on oxygen in the NICU at Tarzana - that is not the cause of all this, but it is just bad medicine. 8 vaccines in one day - I never did this or do this in my practice. I never give the chicken pox one either or a few of the others. " We really liked him and we could see why others did not and do not-esp if they believe in certain natural interventions or alternative therapies that he will not allow since he wants to avoid any red herring recoveries...my friend's boy really, truly, looked great and did well in K with some assistance, in 1st without any, and as I have mentioned there are issues now between 2nd and third grade, and along the timeline Dr. G mentioned. The fact that he has no peripheral vision at this time is in line with at least one part of the body that he says the viruses attack when not treated specifically in kids wth viral illnesses. Its something to think about... As for treatments, we are evaluating them at this time based on how many kids they have worked for and how fully recovered those kids are...it is tough bc I now realize a kid can look pretty good, but have some serious issues not apparent to the eye or even in a conversation...how many affected adults , functional but still quite ill - are there out there after all? That is why we have dropped Pfeiffer Treatment Center, we are still considering chelation, we are putting our hopes in the antiviral angle for the time being, and we are very hesitant about HBOT. At the TACA meetings I have been to here is S Cal I just see so many parents battling issues that support Goldberg's thesis. We are taking the research paper that he produced with s Hopkins to the head of the FDA for some expert analysis of his ideas and his treatment protocols. I will let everyone know the feedback...all I know is that when we were megadosing with the vits etc we thought our boy was getting better too, and discounted the role the antiviral and other rxs had in what we were seeing...and we thought incorrectly that when we stopped seeing stuff the RXs were no longer working...we lost precious gains and time and money by pulling those rxs and by not finding our way to an experienced in immune issues DOCTOR sooner. This is the first dr that has bothered to examine Matt, tongue, eyes, ears, etc and look at his whole pic, as a PEDIATRICIAN to a sick little boy, not bothering to talk about neurologists and the rest bc he believes that we are dealing with illness here - the neurological stuff and even the gut stuff is the consequence, not the cause. The NIDS diet that he has is NOT a healing one, so if kids are improving to the point of long term recovery in his care it sure isn't bc of Wonderbread with some Jiffy on it... " when you have cancer and diabetes, deal with the cancer first...and keep the diabetes in mind, but it cannot be your focus " ...and the other thing we really liked is that when he says recovered it has to mean based on the blood, the brain, the immune system fully up and functioning, and it all has to LAST....he mde the point that you can be weeks from death with cancer in you and not even know it until the tipping point and the moment of diagnosis and then the decline is so rapid. The same is true for our kids, per him. If a DAN says he has recovered a child, Goldberg says show me the immune panels and the scans please bc only then will I agree that this kid is going to be healthy long term and okay. And I should not see any bloated bellies, stool issues, kidney problems, big allergies and dark circles and puffy eyes... He said that getting these kids into Kindergarten and ist is not a big deal, and it does not mean recovered. Where is that child in 2nd grade and then on junior high and onward from that point - that is when the brain damage reveals itself, per him. As a k teacher, I have to say I am with him on that point...K and ist with no aid does not mean to me what I think it means to so many other parents...I think sick kids could slip through the cracks and my own friend whose child is now going into third - the c and d marks are happening, he is still on the Pfieffer maintenance stuff, and his eyes are NOT okay. Golberg wants to prove among other things that these young men who drop dead during their sporting events do so bc of organ damage from viruses,the same ones that are derailing our children to a large degree. He thinks 99.9% of what we are calling autism out there is really yeast and bacterial infections that result from viral infections and metals issues are because of the infections - those metals issues go awy, per him when the immune system is restored. If he is right, the scale on which we have all been ripped off is staggering and the money being made off of our kids is appalling...a dollar a minute, no insurance taken, piles of vits and supps...and he said that all those protocols have been DONE before for the chronic fatigue syndrome and fibromyalgia crowd and failed...so how can they work on our kids who are even more vulnerable, unable to follow diet and megadose protocols safely? He was one angry dude folks, and incredibly gentle and lovely to Matt and genuinely, I think, concerned for his health and well being and quality of life....can the same be said of the person selling you those vits, HBOT, or other therapies? The other thing about Dr. G is that I saw no indication that he was making a mint in the autism business, and I appreciate that about him. I don't know if he is right or not. I am going to give his stuff over to those who might be able to tell me if he is or not...but if he is, your kid does not have autism, is sick, needs and deserves medical care covered by insurance and provided by medical doctors who MUST be held accountable if he or she does not improve or worse, is injured in their care...all the best to everyone trying to navigate this crazy illness. Di > > > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be no > > > > change in him after IVIG..supplements..she suggested HBOT..I'd > > like > > > > tohear from others if this is worth the $$$ or just a way to get > > > folks > > > > to use her chamber in her office? > > > > > > > > > > > > > We did 200 dives of soft chamber mild HBOT 1-1 1/2 hrs./day he was > > > doing great more eye contact, awareness better, skin color good,a > > happy > > > child then started valtrex while doing HBOT he then got chronic > > strep > > > (2-3 different kinds of strep in his gut. > > > now he has all symptoms of PANDAS he continued getting worse we > > found > > > out oxygen was feeding the strep so we immediately stopped. Now he > > is > > > on zithro. > > > How many IVIG treatments did he have? I read sometimes several > > > treatments before seeing positives with some kids. > > > We are staying away from the HBOT while battling strep. > > > Carole > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Exactly - whatever it really is until you get after it I think you do not get the recovery we all dream of for your kids - congrats on the chelation. That is where we head next if the antiviral therapy fails to bring out the metals as well as deal with the infections...SO great to hear that child is well again. I am not sure if HBOT is good for the metals kids or not or if it varies from kid to kid, metals issues or not...Di > > > > > > > > > > I just saw my DAN! and my son has PANDAS and there seems to > be no > > > > > change in him after IVIG..supplements..she suggested HBOT..I'd > > > like > > > > > tohear from others if this is worth the $$$ or just a way to > get > > > > folks > > > > > to use her chamber in her office? > > > > > > > > > > > > > > > > > We did 200 dives of soft chamber mild HBOT 1-1 1/2 hrs./day he > was > > > > doing great more eye contact, awareness better, skin color > good,a > > > happy > > > > child then started valtrex while doing HBOT he then got chronic > > > strep > > > > (2-3 different kinds of strep in his gut. > > > > now he has all symptoms of PANDAS he continued getting worse we > > > found > > > > out oxygen was feeding the strep so we immediately stopped. Now > he > > > is > > > > on zithro. > > > > How many IVIG treatments did he have? I read sometimes several > > > > treatments before seeing positives with some kids. > > > > We are staying away from the HBOT while battling strep. > > > > Carole > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Exactly - whatever it really is until you get after it I think you do not get the recovery we all dream of for your kids - congrats on the chelation. That is where we head next if the antiviral therapy fails to bring out the metals as well as deal with the infections...SO great to hear that child is well again. I am not sure if HBOT is good for the metals kids or not or if it varies from kid to kid, metals issues or not...Di > > > > > > > > > > I just saw my DAN! and my son has PANDAS and there seems to > be no > > > > > change in him after IVIG..supplements..she suggested HBOT..I'd > > > like > > > > > tohear from others if this is worth the $$$ or just a way to > get > > > > folks > > > > > to use her chamber in her office? > > > > > > > > > > > > > > > > > We did 200 dives of soft chamber mild HBOT 1-1 1/2 hrs./day he > was > > > > doing great more eye contact, awareness better, skin color > good,a > > > happy > > > > child then started valtrex while doing HBOT he then got chronic > > > strep > > > > (2-3 different kinds of strep in his gut. > > > > now he has all symptoms of PANDAS he continued getting worse we > > > found > > > > out oxygen was feeding the strep so we immediately stopped. Now > he > > > is > > > > on zithro. > > > > How many IVIG treatments did he have? I read sometimes several > > > > treatments before seeing positives with some kids. > > > > We are staying away from the HBOT while battling strep. > > > > Carole > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Jenn, what is valkion? Never heard of it...Di > > Like others have said... " one man's food is another man's poison " . > This is true for all things in life! Lots of kids have done very > well with Valtrex, however, it wrecked my son. His clostridia and > yeast got WAY out of control, even while on medications to control > the yeast. He had started to do well, then took a nose dive. But, I > will never say that Valtrex is worthless - it just wasn't the right > approach with my son. I do believe viruses, bacteria and yeast need > to be addressed at the same time, using the method that works best > for that person. > > We have just done 5 dives of soft chamber HBOT, and I am LOVING the > changes I am seeing in my son! We are also doing Homeopathy, and I > believe some of the progress is due to that, but the most dramatic > results have been on days when we have dives. So far, so good... I > think it is important that you are addressing underlying issues such > as bacteria (STREP or whatever) while you are doing things like > this. I also believe in balance. If you focus on viruses, you will > get more of yeast or bacteria. > > Someone from another group made a comment that I found interesting. > She said that with her child with Lyme, she would solve one problem > (virus/bacteria, etc...) and another would pop up. This kept > happening over and over again. It was like there were layers that > had to be dealt with and each layer would come up as the body was > ready to deal with it. Now her child is doing well. > > I am also intrigued with the Valkion too. I had read about that > before, and I wonder if it might be a better way to get the same > results that we are getting. > > Jenn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Jenn, what is valkion? Never heard of it...Di > > Like others have said... " one man's food is another man's poison " . > This is true for all things in life! Lots of kids have done very > well with Valtrex, however, it wrecked my son. His clostridia and > yeast got WAY out of control, even while on medications to control > the yeast. He had started to do well, then took a nose dive. But, I > will never say that Valtrex is worthless - it just wasn't the right > approach with my son. I do believe viruses, bacteria and yeast need > to be addressed at the same time, using the method that works best > for that person. > > We have just done 5 dives of soft chamber HBOT, and I am LOVING the > changes I am seeing in my son! We are also doing Homeopathy, and I > believe some of the progress is due to that, but the most dramatic > results have been on days when we have dives. So far, so good... I > think it is important that you are addressing underlying issues such > as bacteria (STREP or whatever) while you are doing things like > this. I also believe in balance. If you focus on viruses, you will > get more of yeast or bacteria. > > Someone from another group made a comment that I found interesting. > She said that with her child with Lyme, she would solve one problem > (virus/bacteria, etc...) and another would pop up. This kept > happening over and over again. It was like there were layers that > had to be dealt with and each layer would come up as the body was > ready to deal with it. Now her child is doing well. > > I am also intrigued with the Valkion too. I had read about that > before, and I wonder if it might be a better way to get the same > results that we are getting. > > Jenn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Jenn, what is valkion? Never heard of it...Di > > Like others have said... " one man's food is another man's poison " . > This is true for all things in life! Lots of kids have done very > well with Valtrex, however, it wrecked my son. His clostridia and > yeast got WAY out of control, even while on medications to control > the yeast. He had started to do well, then took a nose dive. But, I > will never say that Valtrex is worthless - it just wasn't the right > approach with my son. I do believe viruses, bacteria and yeast need > to be addressed at the same time, using the method that works best > for that person. > > We have just done 5 dives of soft chamber HBOT, and I am LOVING the > changes I am seeing in my son! We are also doing Homeopathy, and I > believe some of the progress is due to that, but the most dramatic > results have been on days when we have dives. So far, so good... I > think it is important that you are addressing underlying issues such > as bacteria (STREP or whatever) while you are doing things like > this. I also believe in balance. If you focus on viruses, you will > get more of yeast or bacteria. > > Someone from another group made a comment that I found interesting. > She said that with her child with Lyme, she would solve one problem > (virus/bacteria, etc...) and another would pop up. This kept > happening over and over again. It was like there were layers that > had to be dealt with and each layer would come up as the body was > ready to deal with it. Now her child is doing well. > > I am also intrigued with the Valkion too. I had read about that > before, and I wonder if it might be a better way to get the same > results that we are getting. > > Jenn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Have any of you who are seeing improvements with HBOT considered that a mito cocktail might further the improvements? I'm thinking of the issue of metal poisoning/mito dysfunction in autism and read somewhere, though I cannot cite it, the statement that those with autism require greated mitochondrial oxygen than non-autism. I know someone who cites HBOT as the single best treatment for his son, but his son was given a lot of other treatments first. It seems I recall Dr. Neubrander saying he does not immediately go to HBOT but likes to take it slow with his patients and build up to the next treatment. Also, how many of you who did/did not see improvement know for sure your MTHFR status of your child? I think it gets so complicated because I just found my daughter has two heterozygous MTHFR mutations but some of the literature you read say it's no biggy, some says it's the worst to ever have, and others say it's no problem unless the person with the mutations are displaying the issues associated with it. Like with recovery. Have any of you ever met the kids who obviously have autism, but seem to make fast gains in virtually any treatment? I don't know how to put it into words, they have obvious, severe problems, but just are not like other kids I've seen where you meet them at 2 yrs old and just know they are not gonna do well no matter what the parents try? Maybe I'm picking up on some unknown thing I cannot finger. Then there are the kids who seem to have no improvement with biomed but do great with therapies, others who seem to require biomed to improve on the therapies, and everything in between. Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Have any of you who are seeing improvements with HBOT considered that a mito cocktail might further the improvements? I'm thinking of the issue of metal poisoning/mito dysfunction in autism and read somewhere, though I cannot cite it, the statement that those with autism require greated mitochondrial oxygen than non-autism. I know someone who cites HBOT as the single best treatment for his son, but his son was given a lot of other treatments first. It seems I recall Dr. Neubrander saying he does not immediately go to HBOT but likes to take it slow with his patients and build up to the next treatment. Also, how many of you who did/did not see improvement know for sure your MTHFR status of your child? I think it gets so complicated because I just found my daughter has two heterozygous MTHFR mutations but some of the literature you read say it's no biggy, some says it's the worst to ever have, and others say it's no problem unless the person with the mutations are displaying the issues associated with it. Like with recovery. Have any of you ever met the kids who obviously have autism, but seem to make fast gains in virtually any treatment? I don't know how to put it into words, they have obvious, severe problems, but just are not like other kids I've seen where you meet them at 2 yrs old and just know they are not gonna do well no matter what the parents try? Maybe I'm picking up on some unknown thing I cannot finger. Then there are the kids who seem to have no improvement with biomed but do great with therapies, others who seem to require biomed to improve on the therapies, and everything in between. Debi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Do you think Dr.Goldberg could help your kid? If there are medical issues - and when aren't there - I think he is your guy...my friends' kid who is going to turn six was really a mess post all the hbot iv chelation ALL of it..and he is making progress and doing better all the time...maybe there is something he could do for your kiddo too...Di > > > I wonder if he's keep track of all the kids who get worse and hit rock > bottom in his practice like my son. Despite the very very lengthy paperwork he > makes you do every 6-8 weeks, I had to suggest to them that we test for PANDAS > because no one seemed all that concerned in the fact that my son did a 180 > degree turn from wonderful to falling into the pits of hell in the matter of 4 > months > > > > a message dated 6/28/2008 7:47:10 A.M. Eastern Daylight Time, > joans_java@... writes: > > I heard Neubrander is > keeping a count in his practice. > > > > > > > **************Gas prices getting you down? Search AOL Autos for > fuel-efficient used cars. (http://autos.aol.com/used? ncid=aolaut00050000000007) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Do you think Dr.Goldberg could help your kid? If there are medical issues - and when aren't there - I think he is your guy...my friends' kid who is going to turn six was really a mess post all the hbot iv chelation ALL of it..and he is making progress and doing better all the time...maybe there is something he could do for your kiddo too...Di > > > I wonder if he's keep track of all the kids who get worse and hit rock > bottom in his practice like my son. Despite the very very lengthy paperwork he > makes you do every 6-8 weeks, I had to suggest to them that we test for PANDAS > because no one seemed all that concerned in the fact that my son did a 180 > degree turn from wonderful to falling into the pits of hell in the matter of 4 > months > > > > a message dated 6/28/2008 7:47:10 A.M. Eastern Daylight Time, > joans_java@... writes: > > I heard Neubrander is > keeping a count in his practice. > > > > > > > **************Gas prices getting you down? Search AOL Autos for > fuel-efficient used cars. (http://autos.aol.com/used? ncid=aolaut00050000000007) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Do you think Dr.Goldberg could help your kid? If there are medical issues - and when aren't there - I think he is your guy...my friends' kid who is going to turn six was really a mess post all the hbot iv chelation ALL of it..and he is making progress and doing better all the time...maybe there is something he could do for your kiddo too...Di > > > I wonder if he's keep track of all the kids who get worse and hit rock > bottom in his practice like my son. Despite the very very lengthy paperwork he > makes you do every 6-8 weeks, I had to suggest to them that we test for PANDAS > because no one seemed all that concerned in the fact that my son did a 180 > degree turn from wonderful to falling into the pits of hell in the matter of 4 > months > > > > a message dated 6/28/2008 7:47:10 A.M. Eastern Daylight Time, > joans_java@... writes: > > I heard Neubrander is > keeping a count in his practice. > > > > > > > **************Gas prices getting you down? Search AOL Autos for > fuel-efficient used cars. (http://autos.aol.com/used? ncid=aolaut00050000000007) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 The only problem/wekness with parental reports is that they are well meaning but often unreliable...and six months later gains simply fade away sometimes, but earlier enthusiasm has convinced others to follow suit already....I know there are not studies and good science out there for us, but parental reports, even my reports on this board, are only so useful, really, and I cannot tell anyone where Mastt will be in six months...and parents can get it wrong or come to a wrong conclusion and there is no accountability if they pass along bad advice or simply innacurate reports. My friend with the child who is still on PTC stuff AND having the scary vision issues and the yeat stuff and ADD type issues in school...tells everyone that her child is recovered - and I think she believes this to be true. IT was because her child recovered on the PTC protocol that we signed on...and we questioned how great theri approach was before we even found out that her kid is not really recovered, in our opinion, but that realization further motivated us to keep looking for better solutions/strategies for Matt...so much for parental reports...frustrating, I know. Di > > > > > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be > no > > > > > change in him after IVIG..supplements..she suggested HBOT..I'd > > > like > > > > > tohear from others if this is worth the $$$ or just a way to get > > > > folks > > > > > to use her chamber in her office? > > > > > > > > > > > > > > > > > We did 200 dives of soft chamber mild HBOT 1-1 1/2 hrs./day he was > > > > doing great more eye contact, awareness better, skin color good,a > > > happy > > > > child then started valtrex while doing HBOT he then got chronic > > > strep > > > > (2-3 different kinds of strep in his gut. > > > > now he has all symptoms of PANDAS he continued getting worse we > > > found > > > > out oxygen was feeding the strep so we immediately stopped. Now he > > > is > > > > on zithro. > > > > How many IVIG treatments did he have? I read sometimes several > > > > treatments before seeing positives with some kids. > > > > We are staying away from the HBOT while battling strep. > > > > Carole > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 The only problem/wekness with parental reports is that they are well meaning but often unreliable...and six months later gains simply fade away sometimes, but earlier enthusiasm has convinced others to follow suit already....I know there are not studies and good science out there for us, but parental reports, even my reports on this board, are only so useful, really, and I cannot tell anyone where Mastt will be in six months...and parents can get it wrong or come to a wrong conclusion and there is no accountability if they pass along bad advice or simply innacurate reports. My friend with the child who is still on PTC stuff AND having the scary vision issues and the yeat stuff and ADD type issues in school...tells everyone that her child is recovered - and I think she believes this to be true. IT was because her child recovered on the PTC protocol that we signed on...and we questioned how great theri approach was before we even found out that her kid is not really recovered, in our opinion, but that realization further motivated us to keep looking for better solutions/strategies for Matt...so much for parental reports...frustrating, I know. Di > > > > > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be > no > > > > > change in him after IVIG..supplements..she suggested HBOT..I'd > > > like > > > > > tohear from others if this is worth the $$$ or just a way to get > > > > folks > > > > > to use her chamber in her office? > > > > > > > > > > > > > > > > > We did 200 dives of soft chamber mild HBOT 1-1 1/2 hrs./day he was > > > > doing great more eye contact, awareness better, skin color good,a > > > happy > > > > child then started valtrex while doing HBOT he then got chronic > > > strep > > > > (2-3 different kinds of strep in his gut. > > > > now he has all symptoms of PANDAS he continued getting worse we > > > found > > > > out oxygen was feeding the strep so we immediately stopped. Now he > > > is > > > > on zithro. > > > > How many IVIG treatments did he have? I read sometimes several > > > > treatments before seeing positives with some kids. > > > > We are staying away from the HBOT while battling strep. > > > > Carole > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Dr. Goldberg, Tarzana CA NIDS protocol...I don't have his number in front of me....Di > >> > > >> > I just saw my DAN! and my son has PANDAS and there seems to be no > >> > change in him after IVIG..supplements..she suggested HBOT..I'd > > like > >> > tohear from others if this is worth the $$$ or just a way to get > >> folks > >> > to use her chamber in her office? > >> > > >> > >> > >> We did 200 dives of soft chamber mild HBOT 1-1 1/2 hrs./day he was > >> doing great more eye contact, awareness better, skin color good,a > > happy > >> child then started valtrex while doing HBOT he then got chronic > > strep > >> (2-3 different kinds of strep in his gut. > >> now he has all symptoms of PANDAS he continued getting worse we > > found > >> out oxygen was feeding the strep so we immediately stopped. Now he > > is > >> on zithro. > >> How many IVIG treatments did he have? I read sometimes several > >> treatments before seeing positives with some kids. > >> We are staying away from the HBOT while battling strep. > >> Carole > >> > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2008 Report Share Posted June 29, 2008 I still think I would consult with Dr.G before investing in the big expense of a chamber...esp since his belief based on twenty years of work in this area with our kids is that too often the gains are not permanent and are just that gains, not recovery and healing bc the underlying virus or viruses have not been addressed...so metals pulled will eventually build up in the body again bc the virus is STILL in play, ditto the hyberbaric - it does not kill a virus then how can it heal a child that is infected and sick with one? I don't know...I only know that PANDAS sounds like hell on earth and it really freaks me that a child could wind up with that much worse dilemma post HBOT for " autism " or with scan showing parts of his brain lighting that should NOT...but if kids have been recovered and stayed wrecovered, who knows? Maybe it is a great thing...Di > > > > > > We saw no gains from HBOT> > > > > > > ??Is HBOT worth it??? > > > > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be > > no > > > change in him after IVIG..supplements. .she suggested HBOT..I'd > > like > > > tohear from others if this is worth the $$$ or just a way to > get > > folks > > > to use her chamber in her office? > > > > > > > I`ve been reading all these post on HBOT For my grandson we did a 2- 3 > wk. trial at tour DAN`s office & read studies one study from > Congresman Dan Burton saying HBOT was sucessful treatment for autism. > That study stays with me it was posted on a gov. web page. For my > grandson the trial showed us with eye contact, ind. play,ind speech, > awareness, less stimming all these positives told us we should buy > one. We did 200 dives 1-1 1/2 hr./day doing great also starting > valtrex after 1 month of HBOT then testing showed major STREP in gut > everything only got worse with him we later heard(would love for > someone to comment on this)OXYGEN FEEDS STREP now this child meets > all criteria for PANDAS so we have stopped valtrex & HBOT now he is > on zithro waiting apt with Dr, G. > I am writing this I think we should be very careful I agree with > Kenny some of these Docs are not giving the best guidance. We found > this out to late we are praying Dr. G. can help this little boy. > > Carole > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2008 Report Share Posted June 29, 2008 I still think I would consult with Dr.G before investing in the big expense of a chamber...esp since his belief based on twenty years of work in this area with our kids is that too often the gains are not permanent and are just that gains, not recovery and healing bc the underlying virus or viruses have not been addressed...so metals pulled will eventually build up in the body again bc the virus is STILL in play, ditto the hyberbaric - it does not kill a virus then how can it heal a child that is infected and sick with one? I don't know...I only know that PANDAS sounds like hell on earth and it really freaks me that a child could wind up with that much worse dilemma post HBOT for " autism " or with scan showing parts of his brain lighting that should NOT...but if kids have been recovered and stayed wrecovered, who knows? Maybe it is a great thing...Di > > > > > > We saw no gains from HBOT> > > > > > > ??Is HBOT worth it??? > > > > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be > > no > > > change in him after IVIG..supplements. .she suggested HBOT..I'd > > like > > > tohear from others if this is worth the $$$ or just a way to > get > > folks > > > to use her chamber in her office? > > > > > > > I`ve been reading all these post on HBOT For my grandson we did a 2- 3 > wk. trial at tour DAN`s office & read studies one study from > Congresman Dan Burton saying HBOT was sucessful treatment for autism. > That study stays with me it was posted on a gov. web page. For my > grandson the trial showed us with eye contact, ind. play,ind speech, > awareness, less stimming all these positives told us we should buy > one. We did 200 dives 1-1 1/2 hr./day doing great also starting > valtrex after 1 month of HBOT then testing showed major STREP in gut > everything only got worse with him we later heard(would love for > someone to comment on this)OXYGEN FEEDS STREP now this child meets > all criteria for PANDAS so we have stopped valtrex & HBOT now he is > on zithro waiting apt with Dr, G. > I am writing this I think we should be very careful I agree with > Kenny some of these Docs are not giving the best guidance. We found > this out to late we are praying Dr. G. can help this little boy. > > Carole > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2008 Report Share Posted June 29, 2008 I still think I would consult with Dr.G before investing in the big expense of a chamber...esp since his belief based on twenty years of work in this area with our kids is that too often the gains are not permanent and are just that gains, not recovery and healing bc the underlying virus or viruses have not been addressed...so metals pulled will eventually build up in the body again bc the virus is STILL in play, ditto the hyberbaric - it does not kill a virus then how can it heal a child that is infected and sick with one? I don't know...I only know that PANDAS sounds like hell on earth and it really freaks me that a child could wind up with that much worse dilemma post HBOT for " autism " or with scan showing parts of his brain lighting that should NOT...but if kids have been recovered and stayed wrecovered, who knows? Maybe it is a great thing...Di > > > > > > We saw no gains from HBOT> > > > > > > ??Is HBOT worth it??? > > > > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be > > no > > > change in him after IVIG..supplements. .she suggested HBOT..I'd > > like > > > tohear from others if this is worth the $$$ or just a way to > get > > folks > > > to use her chamber in her office? > > > > > > > I`ve been reading all these post on HBOT For my grandson we did a 2- 3 > wk. trial at tour DAN`s office & read studies one study from > Congresman Dan Burton saying HBOT was sucessful treatment for autism. > That study stays with me it was posted on a gov. web page. For my > grandson the trial showed us with eye contact, ind. play,ind speech, > awareness, less stimming all these positives told us we should buy > one. We did 200 dives 1-1 1/2 hr./day doing great also starting > valtrex after 1 month of HBOT then testing showed major STREP in gut > everything only got worse with him we later heard(would love for > someone to comment on this)OXYGEN FEEDS STREP now this child meets > all criteria for PANDAS so we have stopped valtrex & HBOT now he is > on zithro waiting apt with Dr, G. > I am writing this I think we should be very careful I agree with > Kenny some of these Docs are not giving the best guidance. We found > this out to late we are praying Dr. G. can help this little boy. > > Carole > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2008 Report Share Posted June 29, 2008 I'm so sorry to hear that happened to your kid. Do you know now what caused it? natasa x > > > I wonder if he's keep track of all the kids who get worse and hit rock > bottom in his practice like my son. Despite the very very lengthy paperwork he > makes you do every 6-8 weeks, I had to suggest to them that we test for PANDAS > because no one seemed all that concerned in the fact that my son did a 180 > degree turn from wonderful to falling into the pits of hell in the matter of 4 > months > > > > a message dated 6/28/2008 7:47:10 A.M. Eastern Daylight Time, > joans_java@... writes: > > I heard Neubrander is > keeping a count in his practice. > > > > > > > **************Gas prices getting you down? Search AOL Autos for > fuel-efficient used cars. (http://autos.aol.com/used?ncid=aolaut00050000000007) > Quote Link to comment Share on other sites More sharing options...
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