Guest guest Posted February 3, 2002 Report Share Posted February 3, 2002 Matt, I've read all the postings that went through my e-mail for more than a month now... And i'm pretty upset that i never saw you advertisement before....Maybe I missed it but i doubt it.... It sure contains a lot of info i had a hard time finding on internet. It's funny that your site never came up in the search for AIH. It should be advertise somewhere in the postings. It's really great for a person that is looking for info specially when you have just being dx...and your looking for a site with everything at the same place.... Congradulation and thanks.... By the way the joke idea is great.... from Canada Matt Hastings <matt_1066@...> wrote: Jokes needed for the new FunFactory on the AIH website. http://autoimmunehepatitis.homestead.com/files/fun_factory.html I think that the site needs to have a less serious side, aswell as some where to make us smile when we're feeling under the weather. So if you have any jokes send them to me and I'll make a jokes page. I'll be adding quizzes and amazing information and stuff. Any other idea's or comments please let me know, thanks. Take care Matt Hastings www.AutoImmuneHepatitis.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2002 Report Share Posted September 6, 2002 Hi Matt, I hope you do not take this personal, I am someone you have met. I travel the world with my son to give him the ultimate care and treatments. The entire month of June in Poland, home for 7 days, and off to Miracle Mountain, for another 3 1/2 weeks. Cody always gets the placebo effect from all the therapy we do, hey, that is okay...I call it motivation. However, carrying over is a different story. Yes, I may see some things briefly and he may not continue to do them so willingly. Like walking 60 steps in the 2nd week of HBOT, totally unassisted! He is still walking, started HS football w/my assist. We will see his show again tonight at the game! The more he is stimulated, the better the healing. I missed all my other son's BB games in June, this isn't fun, but I make the best of everything I do. After July HBOT; Cody is tracking better, speech and swallowing improved, and his reading (thank God) has jumped almost a full level (documented at school). I almost wish I could say these therapies don't work, Cody did PT at home for 3 months between visits to Poland...no improvement. Poland in July were his first steps after knee problems for 18 months. The changes are remarkable in my eyes, I don't expect Cody to jump out of the chamber. Perhaps your expectations are too high. Perhaps after 7 or 8 years with your daughter, your idea of " significant gains " will change. Surround yourself with positive people and thoughts, it works. ===== Prayers of Healing, Lynette LaScala (Cody's Mom) " Never doubt that a small group of committed people can change the world. Indeed, it is the only thing that ever has. " ~ Margaret Mead And we will...thanks for caring. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2002 Report Share Posted September 6, 2002 Hi Lynette, Do not ever lower your hopes or expectations for the future for they are what set the limits for our children. Don't fall prey to lowering your expectations in the disguise of positive thought and positive people. HBOT does do something, but our kids need so much more. My argument, very simply, is that we need to take HBOT and EuroMed for what they are and move on to more fertile opportunities as a community. This is the only way to ensure that our kids get what they deserve - outcomes that are radically improved. Unequivocal improvement, not improvement at the margin which is what I feel you are seeing with Cody today. Lynette, you may say that this is impractical and wishful thinking. I disagree. Dr. Kowalczyk realized that I was different than anyone he had talked to yet. As a society we have so much more to offer to our kids than what is available today. Keep doing everything you are doing for Cody... but hold yourself accountable to finding the solution that will allow him to one day jump to the moon. The answer, I assure you, is closer than you think. [ ] Re: Matt Hi Matt, I hope you do not take this personal, I am someone you have met. I travel the world with my son to give him the ultimate care and treatments. The entire month of June in Poland, home for 7 days, and off to Miracle Mountain, for another 3 1/2 weeks. Cody always gets the placebo effect from all the therapy we do, hey, that is okay...I call it motivation. However, carrying over is a different story. Yes, I may see some things briefly and he may not continue to do them so willingly. Like walking 60 steps in the 2nd week of HBOT, totally unassisted! He is still walking, started HS football w/my assist. We will see his show again tonight at the game! The more he is stimulated, the better the healing. I missed all my other son's BB games in June, this isn't fun, but I make the best of everything I do. After July HBOT; Cody is tracking better, speech and swallowing improved, and his reading (thank God) has jumped almost a full level (documented at school). I almost wish I could say these therapies don't work, Cody did PT at home for 3 months between visits to Poland...no improvement. Poland in July were his first steps after knee problems for 18 months. The changes are remarkable in my eyes, I don't expect Cody to jump out of the chamber. Perhaps your expectations are too high. Perhaps after 7 or 8 years with your daughter, your idea of " significant gains " will change. Surround yourself with positive people and thoughts, it works. ===== Prayers of Healing, Lynette LaScala (Cody's Mom) " Never doubt that a small group of committed people can change the world. Indeed, it is the only thing that ever has. " ~ Margaret Mead And we will...thanks for caring. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2002 Report Share Posted September 6, 2002 Matt, RE: " we need to take HBOT and EuroMed for what they are and move on to more fertile opportunities as a community. " I agree with you in one point, there is more that can be done for our children. But, there are multiple challenges with this assessment. And, what are these " more fertile opportunities " ? If we cannot even get physical therapy paid for (which is guaranteed by most third party contracts) and they cannot get HBOT paid for (which is guaranteed under Medicaid law... how do you propose to get these new " therapies " (that have been yet to be dreamed up) paid for? For really effective therapies like Anat Baniel - I wouldn't even think of trying to challenge my INs/HMO. And, you know how much I support her work. Not everyone can afford to pay for all the costs associated for their children, regardless of how phenomenal these therapies are. The economics for most families is devastating. And, if someone were to come up with a tremendous breakthrough TODAY, it would be 10 years before it would be accepted by the general medical field. We are not talking about getting FDA approval for measuring devices... we are talking about medical treatments for children. The most difficult and time consuming FDA and medical industry standard to achieve. Also, what basis do you think this technology will come from? You are not happy with stem cells, you don't support HBOT, and you find many physical therapies less than adequate. Yet, each of these follows solid scientific knowledge and practices. If there is a fully distinct scientific and neurological paradigm out there, it will take even longer that ten years ... possibly 20 years for most parents / patients to gain access to it. Further, very few of us will take a tremendous risk of something that could have adverse effects on our children. Therefore, while we all support the hope of full recovery for our children, most of us parents are dealing with the reality that, that hope is only that - hope. Reality is that we have to move forward with what is known and proven today with realistic measurements and results. Thus, if you have something that is fully restorative of a CP / TBI child's abilities, then please share it with us. But, I have said that it will be 50 years before this is possible. And, I think I am optimistic. At 11:16 AM 9/6/2002 -0500, you wrote: >Hi Lynette, > >Do not ever lower your hopes or expectations for the future for they are >what set the limits for our children. Don't fall prey to lowering your >expectations in the disguise of positive thought and positive people. > >HBOT does do something, but our kids need so much more. My argument, >very simply, is that we need to take HBOT and EuroMed for what they are >and move on to more fertile opportunities as a community. This is the >only way to ensure that our kids get what they deserve - outcomes that >are radically improved. Unequivocal improvement, not improvement at the >margin which is what I feel you are seeing with Cody today. > >Lynette, you may say that this is impractical and wishful thinking. I >disagree. Dr. Kowalczyk realized that I was different than anyone he >had talked to yet. As a society we have so much more to offer to our >kids than what is available today. > >Keep doing everything you are doing for Cody... but hold yourself >accountable to finding the solution that will allow him to one day jump >to the moon. > >The answer, I assure you, is closer than you think. > > [ ] Re: Matt > > > >Hi Matt, > >I hope you do not take this personal, I am someone you have met. >I travel the world with my son to give him the ultimate care and >treatments. The entire month of June in Poland, home for 7 days, and >off to Miracle Mountain, for another 3 1/2 weeks. Cody always gets >the placebo effect from all the therapy we do, hey, that is okay...I >call it motivation. However, carrying over is a different story. >Yes, I may see some things briefly and he may not continue to do them >so willingly. Like walking 60 steps in the 2nd week of HBOT, totally >unassisted! He is still walking, started HS football w/my assist. >We will see his show again tonight at the game! The more he is >stimulated, the better the healing. >I missed all my other son's BB games in June, this isn't fun, but I >make the best of everything I do. After July HBOT; Cody is tracking >better, speech and swallowing improved, and his reading (thank God) >has jumped almost a full level (documented at school). I almost wish >I could say these therapies don't work, Cody did PT at home for 3 >months between visits to Poland...no improvement. Poland in July >were his first steps after knee problems for 18 months. The changes >are remarkable in my eyes, I don't expect Cody to jump out of the >chamber. Perhaps your expectations are too high. Perhaps after 7 or >8 years with your daughter, your idea of " significant gains " will >change. Surround yourself with positive people and thoughts, it >works. > > > >===== >Prayers of Healing, >Lynette LaScala (Cody's Mom) > > > " Never doubt that a small group of committed people can change the >world. Indeed, it is the only thing that ever has. " ~ Margaret Mead > >And we will...thanks for caring. > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2002 Report Share Posted September 6, 2002 >And, if someone were to come up with a tremendous breakthrough TODAY, it >would be 10 years before it would be accepted by the general medical >field. We are not talking about getting FDA approval for measuring >devices... we are talking about medical treatments for children. The most >difficult and time consuming FDA and medical industry standard to achieve. Ed, You've hit the nail on the head. You are exactly right, and this is *precisely* why the Medicaid law for children--specifically Paragraph 5--was created. However, we live in a country called The United STATES of America. For Medicaid services, each state is free to determine what they will or will not pay for--no matter what the federal law states. That's why some states pay for this and some states don't, but the faster every state Medicaid program *has* to pay for it, the faster you'll see legislation like Ed's passed almost instantaneously by every state legislature. Once every 3rd party payor is paying for hyperbaric oxygen therapy for brain-injured children and 95+% of every child experiences improvements, this will force immediate public scrutiny and public accountability onto the most hypocritical medical professional: the pediatric neurologist. These clowns will have to explain this phenomena when they've universally panned HBOT. Suddenly, our children won't be the only ones who are incontinent. What will follow next will be a massive investment to find a cure for brain-injury. Unfortunately none of this will happen unless we parents pick up the ball and run with it. It's in our court. While things move slow here in Georgia, they don't move that slow in other places. Texas is prime for this since hyperbaric oxygen has had some public exposure. It's quite possible our case won't be the one to set the precedent. There are laws on the books that say requests for Medicaid-recipient children must be resolved within 6 months or so. Georgia is not following this policy, obviously, but with 49 other states out there, chances are, other states can resolve this issue quickly. But it won't happen if we don't ask. So ask. Matt, you're a smart guy. Lead the charge in your state. What state are you in? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ " Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight. Do not be wise in your own eyes; fear the LORD and shun evil. " [Prov. 3:5-7] Freels 2948 Windfield Circle Tucker, GA 30084-6714 770/491-6776 (phone and fax) 509/275-1618 (efax, sends fax as email attachment) mailto:dfreels@... http://www.freelanceforum.org/content/portfolio.asp?ID=195 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2002 Report Share Posted September 6, 2002 ***You know, I just saw one yesterday, a hypocritical pedi neuro, and he was. As I proceded to tell him all that had happened to my child and that she had gone for HBOT with tremendous improvements, he interrupts and say " Famous Florida! " and tells me that " they are really getting hammered down there " , that this is raising the cost of medical care for everyone, then he brought up the Canada study, and that's when I nailed him. I told him there was no double blind and the control group received 1.3 ATA, that both groups showed improvement and that my child does best at 1.25 ATA. Then he backed off to the usual arguments of no studies in animal models, etc, they just don't know...and THEN started talking about VNS and all the new drugs that we could try. It was very apparent from his tirade that some of the neuros, anyway, are running scared. Ellen > > Once every 3rd party payor is paying for hyperbaric oxygen therapy for > brain-injured children and 95+% of every child experiences improvements, > this will force immediate public scrutiny and public accountability onto > the most hypocritical medical professional: the pediatric neurologist. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 At 03:34 PM 9/6/2002 -0500, you wrote: Then he backed off to the usual arguments of no studies in animal models, etc Ellen, I sounds like you did well in holding your ground with the Ped. Neurologist. FYI: You may already know this: there have been animal studies completed. In fact Dr. Harch just completed a study with rats giving them a " head-bonk " injury then treating it with HBOT. It clearly demonstrated the efficacy of quickly treating brain injuries with HBOT. Further, Dr.'s Harch and Van Meter conducted several experiments with pigs by stopping their hearts for 30 minutes, and given half the group HBOT and not the other half.. the results were exactly as you would think. the HBOt group did well, the control group died from brain injuries. Further, if you can get a copy of KKJains. Hyperbaric Oxygen Textbook, there are dozens of animal experiments listed in there. Unfortunately, HBOT is not taught in Med Schools and these docs never get to look at this info. Ed Nemeth J. Nemeth President, CEO Spectrum Events 916-856-7044 x 339 Phone 916-856-7040 Fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 >Further, if >you can get a copy of KKJains. Hyperbaric Oxygen Textbook, there are dozens >of animal experiments listed in there. Ellen, those animal studies are listed in Chapter 18, which you can download from medicaid/files/HBOT%20for%20brain-injury.PD F ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ " Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight. Do not be wise in your own eyes; fear the LORD and shun evil. " [Prov. 3:5-7] Freels 2948 Windfield Circle Tucker, GA 30084-6714 770/491-6776 (phone and fax) 509/275-1618 (efax, sends fax as email attachment) mailto:dfreels@... http://www.freelanceforum.org/content/portfolio.asp?ID=195 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 and Ed, There is another very real possibility to the course of events that might follow if HBOT's insurance reimbursement is forced through the legislative process as you guys are promoting. It might be that insurance companies and state Medicaid agencies will not be happy with the same level of improvement that we parents are happy with. They will demand extremely high functional improvement to be achieved or they will cut reimbursement. HBOT might not be able to deliver on those expectations. Have you ever taken your child to a distant relative's house once a year for some holiday celebration and been all pumped up about the improvements that your child has made, only to be disappointed to have the relative half heartily make the comment, oh yea, little ny seems to be doing real well. You know in their heart they just do not understand, they do not understand the importance of any gains that HBOT brings. They will understand even less if the millions, maybe billions of dollars of HBOT reimbursements get passed back to their insurance premiums in the short run. I have spoke to Ed about this, the assumption that widespread use of HBOT will lower overall medical and therefore insurance cost for brain injured kids is a huge leap of faith. You may all feel this in your hearts but no one know what the numbers will really turn out to be. There simply is no reliable data today. If you are correct, wonderful. However, if you have miscalculated, this will in effect cripple the HBOT community, not to mention cripple any proposed brain injury treatment that comes down the pike in the next 50 years. I am willing to call a truce on this list. I will fully support fast and efficient research to help quantify the impact of HBOT. It does not need to come from double blind studies, just some good record keeping on the part of many of the professional centers that monitor this group. Then at least you have your own numbers to fall back on. We can use the BRIGHT Foundation's limited resources to help accomplish this. This is the way that I have always done business. Get the numbers first. Any other way just seems irresponsible to me for the sake of our kids and the next generation of kids. Heck, I think if you look back at history the reason that HBOT has a bad name today was because of some overzealous claims of a few in the early 1900's. Let not fall into the same trap. Ed, I understand your argument that the problem is a difficult problem, but quite frankly you sound like the medical establishment when you make that argument. Just because a problem is difficult does not mean it should not be attacked. Also, you are in no better position to argue that the answer is 50 years away than I am to argue that is 5 years away. All I know is that if we rely on existing modalities to treat our kids and spend time arguing amounts ourselves, we will get nothing better than the status quo. I want more for Alissa, and asking for more than the status quo is the only thing that I am willing to goto Washington and ask for. RE: [ ] Re: Matt >And, if someone were to come up with a tremendous breakthrough TODAY, it >would be 10 years before it would be accepted by the general medical >field. We are not talking about getting FDA approval for measuring >devices... we are talking about medical treatments for children. The most >difficult and time consuming FDA and medical industry standard to achieve. Ed, You've hit the nail on the head. You are exactly right, and this is *precisely* why the Medicaid law for children--specifically Paragraph 5--was created. However, we live in a country called The United STATES of America. For Medicaid services, each state is free to determine what they will or will not pay for--no matter what the federal law states. That's why some states pay for this and some states don't, but the faster every state Medicaid program *has* to pay for it, the faster you'll see legislation like Ed's passed almost instantaneously by every state legislature. Once every 3rd party payor is paying for hyperbaric oxygen therapy for brain-injured children and 95+% of every child experiences improvements, this will force immediate public scrutiny and public accountability onto the most hypocritical medical professional: the pediatric neurologist. These clowns will have to explain this phenomena when they've universally panned HBOT. Suddenly, our children won't be the only ones who are incontinent. What will follow next will be a massive investment to find a cure for brain-injury. Unfortunately none of this will happen unless we parents pick up the ball and run with it. It's in our court. While things move slow here in Georgia, they don't move that slow in other places. Texas is prime for this since hyperbaric oxygen has had some public exposure. It's quite possible our case won't be the one to set the precedent. There are laws on the books that say requests for Medicaid-recipient children must be resolved within 6 months or so. Georgia is not following this policy, obviously, but with 49 other states out there, chances are, other states can resolve this issue quickly. But it won't happen if we don't ask. So ask. Matt, you're a smart guy. Lead the charge in your state. What state are you in? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ " Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight. Do not be wise in your own eyes; fear the LORD and shun evil. " [Prov. 3:5-7] Freels 2948 Windfield Circle Tucker, GA 30084-6714 770/491-6776 (phone and fax) 509/275-1618 (efax, sends fax as email attachment) mailto:dfreels@... http://www.freelanceforum.org/content/portfolio.asp?ID=195 <http://www.freelanceforum.org/content/portfolio.asp?ID=195> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 Guys, This chapter makes a strong argument for exploring HBOT in acute treatment but it is pretty weak on evidence for chronic injury which 99.9% of the people on this list are interested in. I would have expected more references to the hundreds of children that Neubauer has treated. He references four and then only vaguely. I don't recall Harch referencing any of the children he has treated. You thoughts? Re: [ ] Re: Matt >Further, if >you can get a copy of KKJains. Hyperbaric Oxygen Textbook, there are dozens >of animal experiments listed in there. Ellen, those animal studies are listed in Chapter 18, which you can download from medicaid/files/HBOT%20for%20brain-i njury.PD <medicaid/files/HBOT%20for%20brain- injury.PD> F ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ " Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight. Do not be wise in your own eyes; fear the LORD and shun evil. " [Prov. 3:5-7] Freels 2948 Windfield Circle Tucker, GA 30084-6714 770/491-6776 (phone and fax) 509/275-1618 (efax, sends fax as email attachment) mailto:dfreels@... http://www.freelanceforum.org/content/portfolio.asp?ID=195 <http://www.freelanceforum.org/content/portfolio.asp?ID=195> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 Matt, RE: I have spoke to Ed about this, the assumption that widespread use of HBOT will lower overall medical and therefore insurance cost for brain injured kids is a huge leap of faith. Please note that we have pursued ONLY the economics of HBOT. None of these third party or legislative groups gives a rats ass about our kids unless the money can speak for itself. I do understand that reality. And, truly the medical savings are there under the most conservative of estimates. Unfortunately, there are two serious problems: First, the last economic study completed by the CDC was in 1995 using only Californai 1992 data. No one has bothered to review this since then, and the cost drivers for our kids has increased significantly for health care, respite, transportation and school and public services. This study showed a lifetime cost of $503,000 per child. Whenever I spoke to a governmental person with this study in my hand and said the the costs are now probably closer to $2 million lifetime costs, they always said " at least that and increasing every year. " Second, third party payers do not have good information on costs for htese kids because their strategy is simply not to pay. ... for anything.... no matter what it is..... they simply say that you can take you child to the government (Medicaid) or to the school, they have to pay. Of course this is a lie. So if they actually have to pay for something... anything... (other than direct hospitalization) it will increase their direct costs for the patients. But, they cannot say that. Because they cannot go to the government and demonstrate that they are systematically denying guaranteed coverages. So, they use excuses like " experimental " . Read the Blue Cross report on HBOT on this website. read the two studies that they used, and what they said about the studies. There is no way anyone would use those protocols and expect anything! And, if they had minimal competence they would know that. Of course they have minimal competence. So, why would they print this? That, my friend, is why we have so many challenging problems. It has nothing to do with the science. There is literally more science and supportive evidence for HBOT than for anything else for our kids. and for any other HBTO application. Finally, forget the " costs " If a 75 year old medicaid recipient needs a heart transplant they get it. IF a 80 year old man needs a kidney transplant he gets it. These are each $100,000 propositions. Tell me the economics of that as compared giving a baby $15,000 to $25,000 of treatments and making them able to become independent and able to earn a living, while saving and estimated $2 milllion in life time costs. That is only three months interest costs on a life time a savings and a productive tax paying citizen. The cost savings are there for helping kids. There is no economic argument that can get around this. The only problem is that the people that loud moths like me are speaking for are broke, and struggle 24/7 to care for their children and they can't quite get the energy up to fight a full court press by a non-compliant HMO. You and I are very unique in our resources, and abilities to fight for our kids. And, third party payers have preyed on that situation. Stealing money from handicapped kids. That's all that it is. You really need to do a little more HBOT homework. You are missing a great deal here. re: Ed, I understand your argument that the problem is a difficult problem, but quite frankly you sound like the medical establishment when you make that argument. Just because a problem is difficult does not mean it should not be attacked. Also, you are in no better position to argue that the answer is 50 years away than I am to argue that is 5 years away. I am right on because I am considering the various avenues that break thoughs will come from, as well as testing and optimization of these breakthroughs. I have yet to hear of some modality or paradigm that supports your vision! And, I have to be honest, it tries my patients. If you have something, share it. If not, don't slam the accomplishments of others. Remember, the brain IS the final frontier. Forget other solar systems and the center of the earth, or neural computers. Here is nothing that exists in all of creating that matches the brain. And, we still know almost nothing about it. It is a black box, within a black box. Take child with a brain injury and put them in a HBOT chamber and they come out better. That is as straight forward as any drug study ever completed. Best wishes, Ed Ed At 06:29 PM 9/6/2002 -0500, you wrote: > and Ed, > >There is another very real possibility to the course of events that >might follow if HBOT's insurance reimbursement is forced through the >legislative process as you guys are promoting. > >It might be that insurance companies and state Medicaid agencies will >not be happy with the same level of improvement that we parents are >happy with. They will demand extremely high functional improvement to >be achieved or they will cut reimbursement. HBOT might not be able to >deliver on those expectations. Have you ever taken your child to a >distant relative's house once a year for some holiday celebration and >been all pumped up about the improvements that your child has made, only >to be disappointed to have the relative half heartily make the comment, >oh yea, little ny seems to be doing real well. You know in their >heart they just do not understand, they do not understand the importance >of any gains that HBOT brings. They will understand even less if the >millions, maybe billions of dollars of HBOT reimbursements get passed >back to their insurance premiums in the short run. > >I have spoke to Ed about this, the assumption that widespread use of >HBOT will lower overall medical and therefore insurance cost for brain >injured kids is a huge leap of faith. You may all feel this in your >hearts but no one know what the numbers will really turn out to be. >There simply is no reliable data today. If you are correct, wonderful. >However, if you have miscalculated, this will in effect cripple the HBOT >community, not to mention cripple any proposed brain injury treatment >that comes down the pike in the next 50 years. > >I am willing to call a truce on this list. I will fully support fast >and efficient research to help quantify the impact of HBOT. It does not >need to come from double blind studies, just some good record keeping on >the part of many of the professional centers that monitor this group. >Then at least you have your own numbers to fall back on. We can use the >BRIGHT Foundation's limited resources to help accomplish this. > >This is the way that I have always done business. Get the numbers >first. Any other way just seems irresponsible to me for the sake of our >kids and the next generation of kids. > >Heck, I think if you look back at history the reason that HBOT has a bad >name today was because of some overzealous claims of a few in the early >1900's. Let not fall into the same trap. > >Ed, I understand your argument that the problem is a difficult problem, >but quite frankly you sound like the medical establishment when you make >that argument. Just because a problem is difficult does not mean it >should not be attacked. Also, you are in no better position to argue >that the answer is 50 years away than I am to argue that is 5 years >away. All I know is that if we rely on existing modalities to treat our >kids and spend time arguing amounts ourselves, we will get nothing >better than the status quo. I want more for Alissa, and asking for more >than the status quo is the only thing that I am willing to goto >Washington and ask for. > > RE: [ ] Re: Matt > > > > >And, if someone were to come up with a tremendous breakthrough TODAY, >it > >would be 10 years before it would be accepted by the general medical > >field. We are not talking about getting FDA approval for measuring > >devices... we are talking about medical treatments for children. The >most > >difficult and time consuming FDA and medical industry standard to >achieve. > >Ed, > >You've hit the nail on the head. You are exactly right, and this is >*precisely* why the Medicaid law for children--specifically Paragraph >5--was created. > >However, we live in a country called The United STATES of America. For >Medicaid services, each state is free to determine what they will or >will >not pay for--no matter what the federal law states. > >That's why some states pay for this and some states don't, but the >faster >every state Medicaid program *has* to pay for it, the faster you'll see >legislation like Ed's passed almost instantaneously by every state >legislature. > >Once every 3rd party payor is paying for hyperbaric oxygen therapy for >brain-injured children and 95+% of every child experiences improvements, >this will force immediate public scrutiny and public accountability onto >the most hypocritical medical professional: the pediatric neurologist. > >These clowns will have to explain this phenomena when they've >universally >panned HBOT. Suddenly, our children won't be the only ones who are >incontinent. > >What will follow next will be a massive investment to find a cure for >brain-injury. > >Unfortunately none of this will happen unless we parents pick up the >ball >and run with it. It's in our court. > >While things move slow here in Georgia, they don't move that slow in >other >places. Texas is prime for this since hyperbaric oxygen has had some >public >exposure. > >It's quite possible our case won't be the one to set the precedent. >There >are laws on the books that say requests for Medicaid-recipient children >must be resolved within 6 months or so. Georgia is not following this >policy, obviously, but with 49 other states out there, chances are, >other >states can resolve this issue quickly. > >But it won't happen if we don't ask. > >So ask. > >Matt, you're a smart guy. Lead the charge in your state. What state are >you in? > > > >~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > " Trust in the LORD with all your heart and lean not on your own >understanding; in all your ways acknowledge him, and he will make your >paths straight. Do not be wise in your own eyes; fear the LORD and shun >evil. " [Prov. 3:5-7] > > > Freels >2948 Windfield Circle >Tucker, GA 30084-6714 >770/491-6776 (phone and fax) >509/275-1618 (efax, sends fax as email attachment) >mailto:dfreels@... > >http://www.freelanceforum.org/content/portfolio.asp?ID=195 ><http://www.freelanceforum.org/content/portfolio.asp?ID=195> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 Thanks Ed, no, I didn't know about these studies. Its interesting, as I wasn't even pushing HBOT (not yet, LOL) I was just mentioning that she'd been, and he was excessively defensive in my opinion. But then again, long, irrelevant story, but I've caught him in a lie before, so I kinda knew what to expect. He was our first neuro 11 yrs ago. Ellen Re: [ ] Re: Matt > At 03:34 PM 9/6/2002 -0500, you wrote: > Then he backed off to the usual arguments of no studies in animal models, etc > > > Ellen, > > I sounds like you did well in holding your ground with the Ped. Neurologist. > > FYI: You may already know this: > > there have been animal studies completed. In fact Dr. Harch just completed > a study with rats giving them a " head-bonk " injury then treating it with > HBOT. > > It clearly demonstrated the efficacy of quickly treating brain injuries > with HBOT. > > Further, Dr.'s Harch and Van Meter conducted several experiments with pigs > by stopping their hearts for 30 minutes, and given half the group HBOT and > not the other half.. the results were exactly as you would think. the HBOt > group did well, the control group died from brain injuries. Further, if > you can get a copy of KKJains. Hyperbaric Oxygen Textbook, there are dozens > of animal experiments listed in there. > > Unfortunately, HBOT is not taught in Med Schools and these docs never get > to look at this info. > > Ed Nemeth > > > J. Nemeth > President, CEO > Spectrum Events > 916-856-7044 x 339 Phone > 916-856-7040 Fax > > > > > _._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._. > Unrestricted downloads of 50+ pdf files on HBOT efficacy medicaid/files/ > > Download your state EPSDT program http://www.hcfa.gov/medicaid/stateplan/Map.asp by doing a search on the word " ameliorate " . State Medicaid websites http://www.medi-cal.ca.gov/RelSites_Oth_States.asp . Medicaid waiver programs: http://www.geocities.com/HotSprings/Villa/1029/medicaid.html > > Find a hyperbaric clinic http://www.netnet.net/mums/hbolist.htm > > HBOT can save billions of dollars and millions of heartaches. Subscribe to by sending a blank email to mailto:medicaid-subscribe > > Unsubscribe? Click here mailto:medicaid-unsubscribe .. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 Greetings Matt! Have you even ever looked at Dr. Harch's elaborate web site? His first thought about treating brain injured children was based on an emergent situation. For a real smart guy, I'm afraid that you might not be looking in the right places. If you want to contact parents to get their input as if they are the scientists gathering info for a study, you're barking up the wrong tree, and wasting you're time. If you're serious about learning, then you'll have to spend some time actually downloading info from website after website. I've been at it for almost 2 years now, and aside from the general knowledge of Medicine that Dr.'s have, I feel like I'm more informed about hyperbarics than they are. Not that they could never be, but they only know what they know and are taught and are motifvated to learn. This same thing applies to you. You have to want to know. Whether or not you accept what you see, is up to you. How do you know that your kiddo wasn't helped? From what I understand your kiddo is quite young, and the possibility is that if you hadn't done HBOT for her that she would end up like my daughter, a 13 y/o spastic quad. Who can tell how my daughter benefitted from HBOT? She can't talk to me about it, yet, but given time, my hope is that she will. Your baby couldn't tell you either. I'm not trying to be insensitive, but frankly, my take on you is that you are trying to talk people out of trying something that can make a real difference in their childs life. If there is any question in their minds, you are trying to sway them in another direction or not try at all, just because you don't " see " how HBOT benefitted your loved one. Now, your discourse is important, but what it is doing for me is solidifying my belief in HBOT for brain injury. I remember a mother sometime ago relate their story about their first visit back to their Ped's neuro after their child made some significant strides because of their getting HBOT . Of course, the story went as usual. The Dr. was questioning the efficacy and the mother just said, well maybe I should tell my that she's supposed to stop talking because she's not supposed to be able to, because the Dr. said so. Or, I should tell her to stop walking, because she couldn't do it before, and because the Dr. said she couldn't do it, that she should just stop? NOT! Get real. I'm not interested in this debate anymore. You need to see more change in your daughter before you believe something works. Well, to me minute changes can be like giant leaps, when your child hasn't done anything, and for me and huge amounts of other parents, that is like the olive branch in the beak of the dove after the flood. Noah and his family knew that it was just a matter of time that the water would recede and there would be more and more dry land. Receding waters take time. We are not talking about instant coffee or microwave cookery. These are disease ridden children whose bodies have been eroding without oxygen, many for years. I'm proud to say that there is nothing you can say to me that will make me stop working toward getting this therapy into emergency rooms, EMT Ambulances, and delivery rooms so that it is the first therapy that is done for our loved ones not the last. With Respect, Marlena Orndorff Matt Palaszynski wrote: > Guys, > > This chapter makes a strong argument for exploring HBOT in acute > treatment but it is pretty weak on evidence for chronic injury which > 99.9% of the people on this list are interested in. I would have > expected more references to the hundreds of children that Neubauer has > > treated. He references four and then only vaguely. I don't recall > Harch referencing any of the children he has treated. You thoughts? > > Re: [ ] Re: Matt > > > >Further, if > >you can get a copy of KKJains. Hyperbaric Oxygen Textbook, there are > dozens > >of animal experiments listed in there. > > Ellen, those animal studies are listed in Chapter 18, which you can > download from > > ttp:///group/medicaid/files/HBOT%20for%20brain-i > > njury.PD > > medicaid/files/HBOT%20for%20brain- > > injury.PD> > F > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > " Trust in the LORD with all your heart and lean not on your own > understanding; in all your ways acknowledge him, and he will make your > > paths straight. Do not be wise in your own eyes; fear the LORD and > shun > evil. " [Prov. 3:5-7] > > > Freels > 2948 Windfield Circle > Tucker, GA 30084-6714 > 770/491-6776 (phone and fax) > 509/275-1618 (efax, sends fax as email attachment) > mailto:dfreels@... > > http://www.freelanceforum.org/content/portfolio.asp?ID=195 > <http://www.freelanceforum.org/content/portfolio.asp?ID=195> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 Slam dunk, ED!!! Marlena Orndorff Ed Nemeth wrote: > Matt, > > RE: I have spoke to Ed about this, the assumption that widespread > use of > HBOT will lower overall medical and therefore insurance cost for brain > > injured kids is a huge leap of faith. > > > Please note that we have pursued ONLY the economics of HBOT. None of > these > third party or legislative groups gives a rats ass about our kids > unless > the money can speak for itself. I do understand that reality. And, > truly > the medical savings are there under the most conservative of > estimates. > > Unfortunately, there are two serious problems: > > First, the last economic study completed by the CDC was in 1995 using > only > Californai 1992 data. No one has bothered to review this since then, > and > the cost drivers for our kids has increased significantly for health > care, > respite, transportation and school and public services. This study > showed > a lifetime cost of $503,000 per child. > > Whenever I spoke to a governmental person with this study in my hand > and > said the the costs are now probably closer to $2 million lifetime > costs, > they always said " at least that and increasing every year. " > > Second, third party payers do not have good information on costs for > htese > kids because their strategy is simply not to pay. ... for > anything.... no > matter what it is..... they simply say that you can take you child to > the > government (Medicaid) or to the school, they have to pay. Of course > this > is a lie. > > So if they actually have to pay for something... anything... (other > than > direct hospitalization) it will increase their direct costs for the > patients. > > But, they cannot say that. Because they cannot go to the government > and > demonstrate that they are systematically denying guaranteed > coverages. So, > they use excuses like " experimental " . Read the Blue Cross report on > HBOT > on this website. read the two studies that they used, and what they > said > about the studies. There is no way anyone would use those protocols > and > expect anything! And, if they had minimal competence they would know > that. Of course they have minimal competence. So, why would they > print this? > > That, my friend, is why we have so many challenging problems. It has > nothing to do with the science. There is literally more science and > supportive evidence for HBOT than for anything else for our kids. and > for > any other HBTO application. > > Finally, forget the " costs " If a 75 year old medicaid recipient needs > a > heart transplant they get it. IF a 80 year old man needs a kidney > transplant he gets it. These are each $100,000 propositions. Tell me > the > economics of that as compared giving a baby $15,000 to $25,000 of > treatments and making them able to become independent and able to earn > a > living, while saving and estimated $2 milllion in life time costs. > That is > only three months interest costs on a life time a savings and a > productive > tax paying citizen. > > The cost savings are there for helping kids. There is no economic > argument > that can get around this. > > The only problem is that the people that loud moths like me are > speaking > for are broke, and struggle 24/7 to care for their children and they > can't > quite get the energy up to fight a full court press by a non-compliant > HMO. > > You and I are very unique in our resources, and abilities to fight for > our > kids. And, third party payers have preyed on that situation. Stealing > > money from handicapped kids. That's all that it is. > > You really need to do a little more HBOT homework. You are missing a > great > deal here. > > > re: Ed, I understand your argument that the problem is a difficult > problem, > but quite frankly you sound like the medical establishment when you > make > that argument. Just because a problem is difficult does not mean it > should not be attacked. Also, you are in no better position to argue > that the answer is 50 years away than I am to argue that is 5 years > away. > > I am right on because I am considering the various avenues that break > thoughs will come from, as well as testing and optimization of these > breakthroughs. I have yet to hear of some modality or paradigm that > supports your vision! And, I have to be honest, it tries my > patients. If > you have something, share it. If not, don't slam the accomplishments > of > others. > > Remember, the brain IS the final frontier. Forget other solar systems > and > the center of the earth, or neural computers. Here is nothing that > exists > in all of creating that matches the brain. And, we still know almost > nothing about it. It is a black box, within a black box. > > Take child with a brain injury and put them in a HBOT chamber and they > come > out better. That is as straight forward as any drug study ever > completed. > > Best wishes, Ed > > > > > Ed > > At 06:29 PM 9/6/2002 -0500, you wrote: > > and Ed, > > > >There is another very real possibility to the course of events that > >might follow if HBOT's insurance reimbursement is forced through the > >legislative process as you guys are promoting. > > > >It might be that insurance companies and state Medicaid agencies will > > >not be happy with the same level of improvement that we parents are > >happy with. They will demand extremely high functional improvement > to > >be achieved or they will cut reimbursement. HBOT might not be able > to > >deliver on those expectations. Have you ever taken your child to a > >distant relative's house once a year for some holiday celebration and > > >been all pumped up about the improvements that your child has made, > only > >to be disappointed to have the relative half heartily make the > comment, > >oh yea, little ny seems to be doing real well. You know in their > > >heart they just do not understand, they do not understand the > importance > >of any gains that HBOT brings. They will understand even less if the > > >millions, maybe billions of dollars of HBOT reimbursements get passed > > >back to their insurance premiums in the short run. > > > >I have spoke to Ed about this, the assumption that widespread use of > >HBOT will lower overall medical and therefore insurance cost for > brain > >injured kids is a huge leap of faith. You may all feel this in your > >hearts but no one know what the numbers will really turn out to be. > >There simply is no reliable data today. If you are correct, > wonderful. > >However, if you have miscalculated, this will in effect cripple the > HBOT > >community, not to mention cripple any proposed brain injury treatment > > >that comes down the pike in the next 50 years. > > > >I am willing to call a truce on this list. I will fully support fast > > >and efficient research to help quantify the impact of HBOT. It does > not > >need to come from double blind studies, just some good record keeping > on > >the part of many of the professional centers that monitor this group. > > >Then at least you have your own numbers to fall back on. We can use > the > >BRIGHT Foundation's limited resources to help accomplish this. > > > >This is the way that I have always done business. Get the numbers > >first. Any other way just seems irresponsible to me for the sake of > our > >kids and the next generation of kids. > > > >Heck, I think if you look back at history the reason that HBOT has a > bad > >name today was because of some overzealous claims of a few in the > early > >1900's. Let not fall into the same trap. > > > >Ed, I understand your argument that the problem is a difficult > problem, > >but quite frankly you sound like the medical establishment when you > make > >that argument. Just because a problem is difficult does not mean it > >should not be attacked. Also, you are in no better position to argue > > >that the answer is 50 years away than I am to argue that is 5 years > >away. All I know is that if we rely on existing modalities to treat > our > >kids and spend time arguing amounts ourselves, we will get nothing > >better than the status quo. I want more for Alissa, and asking for > more > >than the status quo is the only thing that I am willing to goto > >Washington and ask for. > > > > RE: [ ] Re: Matt > > > > > > > > >And, if someone were to come up with a tremendous breakthrough > TODAY, > >it > > >would be 10 years before it would be accepted by the general > medical > > >field. We are not talking about getting FDA approval for measuring > > > >devices... we are talking about medical treatments for children. > The > >most > > >difficult and time consuming FDA and medical industry standard to > >achieve. > > > >Ed, > > > >You've hit the nail on the head. You are exactly right, and this is > >*precisely* why the Medicaid law for children--specifically Paragraph > > >5--was created. > > > >However, we live in a country called The United STATES of America. > For > >Medicaid services, each state is free to determine what they will or > >will > >not pay for--no matter what the federal law states. > > > >That's why some states pay for this and some states don't, but the > >faster > >every state Medicaid program *has* to pay for it, the faster you'll > see > >legislation like Ed's passed almost instantaneously by every state > >legislature. > > > >Once every 3rd party payor is paying for hyperbaric oxygen therapy > for > >brain-injured children and 95+% of every child experiences > improvements, > >this will force immediate public scrutiny and public accountability > onto > >the most hypocritical medical professional: the pediatric > neurologist. > > > >These clowns will have to explain this phenomena when they've > >universally > >panned HBOT. Suddenly, our children won't be the only ones who are > >incontinent. > > > >What will follow next will be a massive investment to find a cure for > > >brain-injury. > > > >Unfortunately none of this will happen unless we parents pick up the > >ball > >and run with it. It's in our court. > > > >While things move slow here in Georgia, they don't move that slow in > >other > >places. Texas is prime for this since hyperbaric oxygen has had some > >public > >exposure. > > > >It's quite possible our case won't be the one to set the precedent. > >There > >are laws on the books that say requests for Medicaid-recipient > children > >must be resolved within 6 months or so. Georgia is not following this > > >policy, obviously, but with 49 other states out there, chances are, > >other > >states can resolve this issue quickly. > > > >But it won't happen if we don't ask. > > > >So ask. > > > >Matt, you're a smart guy. Lead the charge in your state. What state > are > >you in? > > > > > > > >~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > " Trust in the LORD with all your heart and lean not on your own > >understanding; in all your ways acknowledge him, and he will make > your > >paths straight. Do not be wise in your own eyes; fear the LORD and > shun > >evil. " [Prov. 3:5-7] > > > > > > Freels > >2948 Windfield Circle > >Tucker, GA 30084-6714 > >770/491-6776 (phone and fax) > >509/275-1618 (efax, sends fax as email attachment) > >mailto:dfreels@... > > > >http://www.freelanceforum.org/content/portfolio.asp?ID=195 > ><http://www.freelanceforum.org/content/portfolio.asp?ID=195> > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 Hi everyone, I feel like I am in an argument with my wife and we are each struggling to get the last word in. So I guess I want to get a few more words in because I think a few of my thoughts have been missed as this discussion progressed: 1.) I am not against HBOT - I am not, and would never, try to talk a potential parent out of doing HBOT. I am only trying to provide them with another perspective. 2.) I am not looking to place blame - I do not have sour grapes because Alissa is not progressing and looking to blame it on HBOT. Quite the contrary, Alissa is doing fantastic! Sitting at 14 months, sitting-up on her own at 16 months, combat crawling at 17 months, transitioning to four point at 19, transitioning to standing at 21 months. Alert, bright, engaged, huge understood vocabulary, strong personality. 3.) My expectations are high - To me, Alissa's progress is to be expected. Why? Well because we are on top of every aspect of Alissa's development and we can make sure that she maximizes her abilities with-in the bounds of her injury by using a combination of the existing treatment modalities. To me this is simply the status quo that every parent should be able to achieve. If not on their own then with the assistance of support groups, early intervention, their church, their family, whatever it takes. Parents are extremely resourceful and hardworking, and almost all parents actually achieve it. Lynnette's post was a good example of that. I am simply saying, lets not stop there and slap each others back and say what a great job we have done. Why... because our kids are still very very hurt. I say when we achieve the status quo, give yourself a night off, get the round of congratulations from your support group, then come back the next morning ready to take on the real challenge... how do we get beyond what is already available today. This is where I would like to see the energy focused by the talented people on this group. 4.) I know how hard it is - I know what I am asking is like winning the triple crown, getting four gold medals, winning the Superbowl five times. But people, if we don't do it for our kids, no one will. You have got your kids this far. Why stop now? I am not looking to create guilt... but the future is in our hands. 5.) Looking at HBOT from 40,000 feet - I am here not because I am against HBOT but because I convinced that for all practical arguments that the brain injured community already has HBOT.... and it has not dramatically changed outcomes. I know that at least the UK, Russia and Chinese communities have HBOT as a governmental sponsored treatment for brain injury but they still have terribly hurt children. I know that many, many of the parents on the list serves that I have monitored have done HBOT. Their kids are all still very hurt. 6.) This discussion is beyond facts - Unfortunately, answering the question of whether you want to devote your passion to HBOT or to advancing beyond that status quo can is often not based on fact any more. Marlena said it " I'm proud to say that there is nothing you can say to me that will make me stop " . For many, it is now a question of almost ideology. Historically, this is a dangerous situation. 7.) I am concerned about legislative precedent - I laid out my concerns that if we force HBOT through the legislative process it may in fact backfire and we may lose more than just HBOT. We may lose credibility for all future treatments options. 8.) I am concerned that we are willing to settle for less than our kids deserve - As a community, I am concerned that we are not fighting for a CURE. Society is completely ready to look for and except a cure for Alzheimer's, they are ready to find a cure for cancer and AIDS. But somehow, our society, and even some of ourselves, are convinced that it is not worth looking for a cure for our children. 9.) We have got to start sometime, it might as well be today - I will be the first to admit that it is a tough challenge, but we have to start in order to make progress. If we spend all of our passion on one piece of the puzzle, like HBOT, then we will have cheated our kids and our kid's kids. My final words for a while. Lets give our kids HBOT, but please... lets not stop there. Lets join together with a Vision to making this the last generation of children to suffer from Brain injury. RE: [ ] Re: Matt > > > > > > > > >And, if someone were to come up with a tremendous breakthrough > TODAY, > >it > > >would be 10 years before it would be accepted by the general > medical > > >field. We are not talking about getting FDA approval for measuring > > > >devices... we are talking about medical treatments for children. > The > >most > > >difficult and time consuming FDA and medical industry standard to > >achieve. > > > >Ed, > > > >You've hit the nail on the head. You are exactly right, and this is > >*precisely* why the Medicaid law for children--specifically Paragraph > > >5--was created. > > > >However, we live in a country called The United STATES of America. > For > >Medicaid services, each state is free to determine what they will or > >will > >not pay for--no matter what the federal law states. > > > >That's why some states pay for this and some states don't, but the > >faster > >every state Medicaid program *has* to pay for it, the faster you'll > see > >legislation like Ed's passed almost instantaneously by every state > >legislature. > > > >Once every 3rd party payor is paying for hyperbaric oxygen therapy > for > >brain-injured children and 95+% of every child experiences > improvements, > >this will force immediate public scrutiny and public accountability > onto > >the most hypocritical medical professional: the pediatric > neurologist. > > > >These clowns will have to explain this phenomena when they've > >universally > >panned HBOT. Suddenly, our children won't be the only ones who are > >incontinent. > > > >What will follow next will be a massive investment to find a cure for > > >brain-injury. > > > >Unfortunately none of this will happen unless we parents pick up the > >ball > >and run with it. It's in our court. > > > >While things move slow here in Georgia, they don't move that slow in > >other > >places. Texas is prime for this since hyperbaric oxygen has had some > >public > >exposure. > > > >It's quite possible our case won't be the one to set the precedent. > >There > >are laws on the books that say requests for Medicaid-recipient > children > >must be resolved within 6 months or so. Georgia is not following this > > >policy, obviously, but with 49 other states out there, chances are, > >other > >states can resolve this issue quickly. > > > >But it won't happen if we don't ask. > > > >So ask. > > > >Matt, you're a smart guy. Lead the charge in your state. What state > are > >you in? > > > > > > > >~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > " Trust in the LORD with all your heart and lean not on your own > >understanding; in all your ways acknowledge him, and he will make > your > >paths straight. Do not be wise in your own eyes; fear the LORD and > shun > >evil. " [Prov. 3:5-7] > > > > > > Freels > >2948 Windfield Circle > >Tucker, GA 30084-6714 > >770/491-6776 (phone and fax) > >509/275-1618 (efax, sends fax as email attachment) > >mailto:dfreels@... > > > > http://www.freelanceforum.org/content/portfolio.asp?ID=195 <http://www.freelanceforum.org/content/portfolio.asp?ID=195> > >< http://www.freelanceforum.org/content/portfolio.asp?ID=195 <http://www.freelanceforum.org/content/portfolio.asp?ID=195> > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 Dear Matt: I told several that I would not respond to your email......yet, now I feel compelled to do so. I also have seen the PLACEBO effect of hbot. My husband, Bill, suffered a massive brain aneurysm and then hemorrhagic bleed. Totally neurologically devasted. Most know Bill's story - so I will not repeat. But, after being a 24-hour care person for 3 years - we put him into a chamber (me in there, also) and on the 8th hbot, Bill literally woke up. Started initiating conversation (non-verbal for 3 years), walking unassisted, eyes came into focus, stopped drooling, urges to go to the bathroom again, stood more erect and stopped dragging his rt. leg. I am sure that Hyper-tec could testify as to the wonderful PLACEBO effect he got. Now, with additional hbot, Bill continues to improve further. And, talk about additional therapies, drugs, alternative therapies, even hypnosis, aura cleansing, you name it - if it was out there - conventional medicine/therapy or not, he got it. Still very little response. Until the wonderful PLACEBO effect of hbot. And, this was a man who doctors asked me to donate his organs - this was a man who Texas Rehabilitation Commission ordered a complete neurological work-up on one year before hbot, and the report stated that Bill would be a VEGETABLE (per se)_ the rest of his life, never able to interact - do for himself, would need constant 24 hour care for as long as he lived. Talk to Ed Nementh. Bill was tired and wore out from the plane ride from Texas to Calif., but he lobbied Assemblymen with me all day long and sat next to me while we testified for AB 2763. Bill even said a few words to the legislature - although, he talks continually these days. This PLACEBO effect has given my husband back a life with quality. Will he ever work again - probably not. But, who cares. He plays with his grandchildren, pretty much does what he wants to do, is able to be left now alone for several hours at a time and is trying to drive my crazy with his intense desire to be independent again. And, because of our involvement with hyperbaric medicine, I have met and witnessed hundreds of others, adults and children alike who have been written off or suffering who also have received miraculous benefits from Hyperbaric Oxygen Therapy. Do they all get the same results? No. Some are more, some are less. Very few see little results. But, the odds of SOME good results are on our side. And, I know I speak for everyone on this list when I say " I will take ANY good results we get - PLACEBO or not - and thank God daily for the opportunity to have been able to place Bill in a hyperbaric chamber. And, I will continue to do so for as long as he lives. " The answer, I assure you, is closer that you think. " Do you know of a miracle cure or treatment on the horizon that we do not? Please share if you do. e Creacy Wife of Bill Creacy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 Matt: RE: My final words for a while. Lets give our kids HBOT, but please... lets not stop there. Lets join together with a Vision to making this the last generation of children to suffer from Brain injury. I am still waiting for this alternative, or new paradigm. Until something is on the table, this is what we have to work with, and 98% of the people that need this cannot pay for HBOT. Further, they cannot get reimbursement for any of their guaranteed treatments. RE: Other countries: Come on Matt, the countries you named are seriously flawed economic systems! You argument that many people didn't get HBOT is inane because very few people get anything! Russia has gone through a cataclismic econmic change 10 years ago. China, Cuba well their current problems speak for themselves. UK Physicians readily accept the restorative powers of HBOT. (I had a discussion with the Gloabl Product manager of Excelon after DR. Harch restored an Alzhiemers patient to independent living and function. He (a UK MD) immediately credited the patients improvement ot HBOT and specifically NOT Excelon. And, he has a really strong economic interest to push Excelon. But, when you speak with a Russian, Chinese, UK or other physician RE: HBOT, they will fight you tooth and nail if you discount the effects of HBOT. Go read the second symposium research presentations from Best Publ. One Russian physician was quoted as saying, " What is the controversy, it works! " . SO, where is the question. RE: At 10:09 AM 9/7/2002 -0500, you wrote: >and we can make sure that she maximizes her abilities >with-in the bounds of her injury by using a combination of the existing >treatment modalities. To me this is simply the status quo that every >parent should be able to achieve. This is the real issue. Approx. 90% of families with handicapped children end in divorce. And, that single Mom has several severe challenges in becoming involved with another person. First, she has to spend 24/7 caring for her child. Second, she needs to find someone she can trust with her child's care and welfare; Third, she must find someone who has the (fill in the blank) to love someone knowing that he will be forever second to a handicapped child, and as well as be god enough to love that child (as their own) and all the baggage that goes with it. This person is obviously economically challenged if not only from her situation as a single Mom, but also because of the extra uncovered expenses required for their child. Also, by definition, she cannot enter the work force. Finally, she has to do all the things to investigate the care for her child, learn all about medicine, as well as fight the insurance company that is actively preying on their situation. And, if she is not a single Mom, the family probably is broke and exhausted anyhow. I know that I was never more worn out and exhausted of money, time and energy as when I I was spending all my time fighting to get 's contractually guaranteed therapies. When she turned three years old, I fgured out that I could spend less time going out and earning the extra money to pay for her care, and get better care,, guaranteed to be given her, and with less destruction to my own health. Not everyone has that option. In fact very few have it. And, you know the support groups cannot deliver what is needed. RE: Legislation: You do not understand the bigger fight required. Read my last letter. This isn't only about HBOT. It is about ALL the other therapies that are beneficial and economically effective, but not delivered. HBOT is the focal point because it has more scientific research and directly measurable benefits than anything else out there. These are all in the gunsight. But, we have to go after a single target. RE: Your praise for your daughter's improvements..... ever wonder what is different about your daughter? She had HBOT at 4 months of age (which you deserve exceptional credit for). Compare her to any other child that has the same ancillary therapies. I understand your position to " heal " the child. It isn't happening. WE cannot even heal a badly torn cartilage. A very simple tissue system that we have great comparative depth of knowledge. And great economic incentives. I go back to my earlier statement - 50 years we will be getting someplace. And that is only because we are fighting so hard for this today. 50 years. We have yet to understand the teleologic impetus of regenerating neurons - even though this has been delineated at the subcellular, electron microspcopic level in 1980. It is known that vertebrate regenerating neurons return to the same neurons that they were ablated from. 20 years ago. We still don't know what to do with this. And, you believe we are going to fully restore damaged brains in 5-10 years? we cannot even measure all the growth hormones released by HBOT, or even know what they all are! And, stem cells are 10 years away from any practical application, forgetting the brain. That is the time that a solid isolated compound can go from the lab to FDA approval and medical prescription.... forgetting whether it will be paid for. Sorry, Matt, you are a phenomenally great Dad. But, you are missing many issues on TBI recovery. Re-look at the HBOT you gave Alyssa at 4 months of age in a different light. You can only teach a broken brain (plasticity) so much. IT needs more help. That help IS HBOT. Also, please note that while I ardently support this medical niche, I cannot wait for the day that your dream is fulfilled. IT is also my dream. More than anyone will ever understand. I don;t ever want another parent to go through what I did with . And, I don't want to see her " friends " suffer anymore. So, it you really have a new medical treatment paradigm for us to got forward with, share it. Every parent on this list will do anything for their child. And, please understand that no matter what, I consider you on our " team " and wish the best for Alyssa and you and your family. Dont;' ever think otherwise. Warm Regards, Ed Nemeth J. Nemeth President, CEO Spectrum Events 916-856-7044 x 339 Phone 916-856-7040 Fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 Dear Ed, Thank you for your well written response to Matt. Mike and Betsy Tyler RE: [ ] Re: Matt > Matt: > > RE: My final words for a while. Lets give our kids HBOT, but > please... > lets not stop there. Lets join together with a Vision to making this > the last generation of children to suffer from Brain injury. > > I am still waiting for this alternative, or new paradigm. Until something > is on the table, this is what we have to work with, and 98% of the people > that need this cannot pay for HBOT. Further, they cannot get reimbursement > for any of their guaranteed treatments. > > > RE: Other countries: > > Come on Matt, the countries you named are seriously flawed economic > systems! You argument that many people didn't get HBOT is inane because > very few people get anything! Russia has gone through a cataclismic > econmic change 10 years ago. China, Cuba well their current problems speak > for themselves. UK Physicians readily accept the restorative powers of > HBOT. (I had a discussion with the Gloabl Product manager of Excelon after > DR. Harch restored an Alzhiemers patient to independent living and > function. He (a UK MD) immediately credited the patients improvement ot > HBOT and specifically NOT Excelon. And, he has a really strong economic > interest to push Excelon. > > But, when you speak with a Russian, Chinese, UK or other > physician RE: HBOT, they will fight you tooth and nail if you discount > the effects of HBOT. Go read the second symposium research presentations > from Best Publ. > > One Russian physician was quoted as saying, " What is the controversy, it > works! " . SO, where is the question. > > RE: At 10:09 AM 9/7/2002 -0500, you wrote: > >and we can make sure that she maximizes her abilities > >with-in the bounds of her injury by using a combination of the existing > >treatment modalities. To me this is simply the status quo that every > >parent should be able to achieve. > > > This is the real issue. Approx. 90% of families with handicapped children > end in divorce. > > And, that single Mom has several severe challenges in becoming involved > with another person. First, she has to spend 24/7 caring for her > child. Second, she needs to find someone she can trust with her child's > care and welfare; Third, she must find someone who has the (fill in the > blank) to love someone knowing that he will be forever second to a > handicapped child, and as well as be god enough to love that child (as > their own) and all the baggage that goes with it. > > This person is obviously economically challenged if not only from her > situation as a single Mom, but also because of the extra uncovered expenses > required for their child. Also, by definition, she cannot enter the work > force. > > Finally, she has to do all the things to investigate the care for her > child, learn all about medicine, as well as fight the insurance company > that is actively preying on their situation. > > And, if she is not a single Mom, the family probably is broke and exhausted > anyhow. I know that I was never more worn out and exhausted of money, time > and energy as when I I was spending all my time fighting to get 's > contractually guaranteed therapies. When she turned three years old, I > fgured out that I could spend less time going out and earning the extra > money to pay for her care, and get better care,, guaranteed to be given > her, and with less destruction to my own health. > > Not everyone has that option. In fact very few have it. And, you know the > support groups cannot deliver what is needed. > > > RE: Legislation: You do not understand the bigger fight required. Read > my last letter. This isn't only about HBOT. It is about ALL the other > therapies that are beneficial and economically effective, but not > delivered. HBOT is the focal point because it has more scientific research > and directly measurable benefits than anything else out there. These are > all in the gunsight. But, we have to go after a single target. > > > RE: Your praise for your daughter's improvements..... ever wonder what is > different about your daughter? She had HBOT at 4 months of age (which you > deserve exceptional credit for). Compare her to any other child that has > the same ancillary therapies. > > I understand your position to " heal " the child. It isn't happening. WE > cannot even heal a badly torn cartilage. A very simple tissue system that > we have great comparative depth of knowledge. And great economic incentives. > > > I go back to my earlier statement - 50 years we will be getting > someplace. And that is only because we are fighting so hard for this > today. 50 years. We have yet to understand the teleologic impetus of > regenerating neurons - even though this has been delineated at the > subcellular, electron microspcopic level in 1980. It is known that > vertebrate regenerating neurons return to the same neurons that they were > ablated from. 20 years ago. We still don't know what to do with this. > And, you believe we are going to fully restore damaged brains in 5-10 > years? we cannot even measure all the growth hormones released by HBOT, or > even know what they all are! > > And, stem cells are 10 years away from any practical application, > forgetting the brain. That is the time that a solid isolated compound can > go from the lab to FDA approval and medical prescription.... forgetting > whether it will be paid for. > > Sorry, Matt, you are a phenomenally great Dad. But, you are missing many > issues on TBI recovery. Re-look at the HBOT you gave Alyssa at 4 months of > age in a different light. You can only teach a broken brain (plasticity) so > much. IT needs more help. That help IS HBOT. > > Also, please note that while I ardently support this medical niche, I > cannot wait for the day that your dream is fulfilled. IT is also my > dream. More than anyone will ever understand. I don;t ever want another > parent to go through what I did with . And, I don't want to see > her " friends " suffer anymore. > > So, it you really have a new medical treatment paradigm for us to got > forward with, share it. Every parent on this list will do anything for > their child. > > And, please understand that no matter what, I consider you on our " team " > and wish the best for Alyssa and you and your family. Dont;' ever think > otherwise. > > Warm Regards, > Ed Nemeth > > J. Nemeth > President, CEO > Spectrum Events > 916-856-7044 x 339 Phone > 916-856-7040 Fax > > > > > _._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._._. > Unrestricted downloads of 50+ pdf files on HBOT efficacy medicaid/files/ > > Download your state EPSDT program http://www.hcfa.gov/medicaid/stateplan/Map.asp by doing a search on the word " ameliorate " . State Medicaid websites http://www.medi-cal.ca.gov/RelSites_Oth_States.asp . Medicaid waiver programs: http://www.geocities.com/HotSprings/Villa/1029/medicaid.html > > Find a hyperbaric clinic http://www.netnet.net/mums/hbolist.htm > > HBOT can save billions of dollars and millions of heartaches. Subscribe to by sending a blank email to mailto:medicaid-subscribe > > Unsubscribe? Click here mailto:medicaid-unsubscribe .. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 Matt, As a parent who has a child with CP and whose child had 62 HBO treatments so far, my has not had the jump-out-at-your-face improvements with HBO, such as talking, walking or even sitting up on her own. However, after the treatments she was looser, louder with her sounds, ate and slept better, and appeared more aware of things going on around her. This noticed by me and family members at home who were not told of the improvements, but recognized them...that was our own test so to speak. Even though she continues not to talk, walk, or sit by herself, she knows the direction she is traveling in a car as evidenced by turning a certain way leads to Walmart, and another way not, crying when not stopping at church on the way somewhere else because she had such a wonderful time at Vacation Bible School this summer. By the way, when the car turns in the direction of Walmart, the screams and laughing begin!!! She also knows directions from landmarks as evidenced by strolling. She is now playing some games with us, simple little game playing but that is a stage itself. And as a parent, I will appreciate these gains, as simple as they may seem to you or others, and I thank God every day for these gains. And some of these gains will not have a produced by HBO tag on them, but the improvements were there. And for the magical CURE for cp and other brain injuries, the stem cell therapy is at least 10 years away, and if you think that they will be offering this readily to our little babies think again. Much will probably be done on the adult level first with spill over later for the little ones. By that time our little ones will be teenagers. Of course I hope and pray that we do not have to wait that long. And I have also considered going to Europe if and when they should start providing this to little ones if they beat us in the time line. And Matt, you may not ever realize how lucky your daughter and your family are that you were able to provide her with treatments at so young an age, but I hope you listen to Ed's advice and do a lot of research, then hopefully you will. Sincerely, Betsy A. Tyler RN BSN CCRN MOMMIE RE: [ ] Re: Matt > > > > > > > > > > > > >And, if someone were to come up with a tremendous breakthrough > > TODAY, > > >it > > > >would be 10 years before it would be accepted by the general > > medical > > > >field. We are not talking about getting FDA approval for measuring > > > > > >devices... we are talking about medical treatments for children. > > The > > >most > > > >difficult and time consuming FDA and medical industry standard to > > >achieve. > > > > > >Ed, > > > > > >You've hit the nail on the head. You are exactly right, and this is > > >*precisely* why the Medicaid law for children--specifically Paragraph > > > > >5--was created. > > > > > >However, we live in a country called The United STATES of America. > > For > > >Medicaid services, each state is free to determine what they will or > > >will > > >not pay for--no matter what the federal law states. > > > > > >That's why some states pay for this and some states don't, but the > > >faster > > >every state Medicaid program *has* to pay for it, the faster you'll > > see > > >legislation like Ed's passed almost instantaneously by every state > > >legislature. > > > > > >Once every 3rd party payor is paying for hyperbaric oxygen therapy > > for > > >brain-injured children and 95+% of every child experiences > > improvements, > > >this will force immediate public scrutiny and public accountability > > onto > > >the most hypocritical medical professional: the pediatric > > neurologist. > > > > > >These clowns will have to explain this phenomena when they've > > >universally > > >panned HBOT. Suddenly, our children won't be the only ones who are > > >incontinent. > > > > > >What will follow next will be a massive investment to find a cure for > > > > >brain-injury. > > > > > >Unfortunately none of this will happen unless we parents pick up the > > >ball > > >and run with it. It's in our court. > > > > > >While things move slow here in Georgia, they don't move that slow in > > >other > > >places. Texas is prime for this since hyperbaric oxygen has had some > > >public > > >exposure. > > > > > >It's quite possible our case won't be the one to set the precedent. > > >There > > >are laws on the books that say requests for Medicaid-recipient > > children > > >must be resolved within 6 months or so. Georgia is not following this > > > > >policy, obviously, but with 49 other states out there, chances are, > > >other > > >states can resolve this issue quickly. > > > > > >But it won't happen if we don't ask. > > > > > >So ask. > > > > > >Matt, you're a smart guy. Lead the charge in your state. What state > > are > > >you in? > > > > > > > > > > > >~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > > " Trust in the LORD with all your heart and lean not on your own > > >understanding; in all your ways acknowledge him, and he will make > > your > > >paths straight. Do not be wise in your own eyes; fear the LORD and > > shun > > >evil. " [Prov. 3:5-7] > > > > > > > > > Freels > > >2948 Windfield Circle > > >Tucker, GA 30084-6714 > > >770/491-6776 (phone and fax) > > >509/275-1618 (efax, sends fax as email attachment) > > >mailto:dfreels@... > > > > > > http://www.freelanceforum.org/content/portfolio.asp?ID=195 > <http://www.freelanceforum.org/content/portfolio.asp?ID=195> > > >< http://www.freelanceforum.org/content/portfolio.asp?ID=195 > <http://www.freelanceforum.org/content/portfolio.asp?ID=195> > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 Hi Betsy and Ed, I don't have the time to do it this weekend, however I do feel the need to lay out were I think the hope lies beyond HBOT. One thing that I would like to make clear is that I do not feel that Stem Cells are the answer. Actually for the very same reason that I don't feel that HBOT is the answer. Betsy, thanks for the e-mail and I am happy for your improvements. I fully understand that many parents see these types of improvements when they do HBOT. We saw them in Alissa as well. I think that HBOT is possibly acting on one of the key body systems responsible for producing CP issues, and I don't think it is the brain. We have be able to reproduce and even surpass these same results with a combination of other therapies directed at the same body system. This is one of the reasons I am convinced that HBOT is one of several therapy's that need to be investigated with equal vigor. This to me is the exciting aspect of HBOT... what can we learn from it. Re: [ ] Re: Matt Matt, As a parent who has a child with CP and whose child had 62 HBO treatments so far, my has not had the jump-out-at-your-face improvements with HBO, such as talking, walking or even sitting up on her own. However, after the treatments she was looser, louder with her sounds, ate and slept better, and appeared more aware of things going on around her. This noticed by me and family members at home who were not told of the improvements, but recognized them...that was our own test so to speak. Even though she continues not to talk, walk, or sit by herself, she knows the direction she is traveling in a car as evidenced by turning a certain way leads to Walmart, and another way not, crying when not stopping at church on the way somewhere else because she had such a wonderful time at Vacation Bible School this summer. By the way, when the car turns in the direction of Walmart, the screams and laughing begin!!! She also knows directions from landmarks as evidenced by strolling. She is now playing some games with us, simple little game playing but that is a stage itself. And as a parent, I will appreciate these gains, as simple as they may seem to you or others, and I thank God every day for these gains. And some of these gains will not have a produced by HBO tag on them, but the improvements were there. And for the magical CURE for cp and other brain injuries, the stem cell therapy is at least 10 years away, and if you think that they will be offering this readily to our little babies think again. Much will probably be done on the adult level first with spill over later for the little ones. By that time our little ones will be teenagers. Of course I hope and pray that we do not have to wait that long. And I have also considered going to Europe if and when they should start providing this to little ones if they beat us in the time line. And Matt, you may not ever realize how lucky your daughter and your family are that you were able to provide her with treatments at so young an age, but I hope you listen to Ed's advice and do a lot of research, then hopefully you will. Sincerely, Betsy A. Tyler RN BSN CCRN MOMMIE RE: [ ] Re: Matt > > > > > > > > > > > > >And, if someone were to come up with a tremendous breakthrough > > TODAY, > > >it > > > >would be 10 years before it would be accepted by the general > > medical > > > >field. We are not talking about getting FDA approval for measuring > > > > > >devices... we are talking about medical treatments for children. > > The > > >most > > > >difficult and time consuming FDA and medical industry standard to > > >achieve. > > > > > >Ed, > > > > > >You've hit the nail on the head. You are exactly right, and this is > > >*precisely* why the Medicaid law for children--specifically Paragraph > > > > >5--was created. > > > > > >However, we live in a country called The United STATES of America. > > For > > >Medicaid services, each state is free to determine what they will or > > >will > > >not pay for--no matter what the federal law states. > > > > > >That's why some states pay for this and some states don't, but the > > >faster > > >every state Medicaid program *has* to pay for it, the faster you'll > > see > > >legislation like Ed's passed almost instantaneously by every state > > >legislature. > > > > > >Once every 3rd party payor is paying for hyperbaric oxygen therapy > > for > > >brain-injured children and 95+% of every child experiences > > improvements, > > >this will force immediate public scrutiny and public accountability > > onto > > >the most hypocritical medical professional: the pediatric > > neurologist. > > > > > >These clowns will have to explain this phenomena when they've > > >universally > > >panned HBOT. Suddenly, our children won't be the only ones who are > > >incontinent. > > > > > >What will follow next will be a massive investment to find a cure for > > > > >brain-injury. > > > > > >Unfortunately none of this will happen unless we parents pick up the > > >ball > > >and run with it. It's in our court. > > > > > >While things move slow here in Georgia, they don't move that slow in > > >other > > >places. Texas is prime for this since hyperbaric oxygen has had some > > >public > > >exposure. > > > > > >It's quite possible our case won't be the one to set the precedent. > > >There > > >are laws on the books that say requests for Medicaid-recipient > > children > > >must be resolved within 6 months or so. Georgia is not following this > > > > >policy, obviously, but with 49 other states out there, chances are, > > >other > > >states can resolve this issue quickly. > > > > > >But it won't happen if we don't ask. > > > > > >So ask. > > > > > >Matt, you're a smart guy. Lead the charge in your state. What state > > are > > >you in? > > > > > > > > > > > >~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > > " Trust in the LORD with all your heart and lean not on your own > > >understanding; in all your ways acknowledge him, and he will make > > your > > >paths straight. Do not be wise in your own eyes; fear the LORD and > > shun > > >evil. " [Prov. 3:5-7] > > > > > > > > > Freels > > >2948 Windfield Circle > > >Tucker, GA 30084-6714 > > >770/491-6776 (phone and fax) > > >509/275-1618 (efax, sends fax as email attachment) > > >mailto:dfreels@... > > > > > > http://www.freelanceforum.org/content/portfolio.asp?ID=195 <http://www.freelanceforum.org/content/portfolio.asp?ID=195> > < http://www.freelanceforum.org/content/portfolio.asp?ID=195 <http://www.freelanceforum.org/content/portfolio.asp?ID=195> > > > >< http://www.freelanceforum.org/content/portfolio.asp?ID=195 <http://www.freelanceforum.org/content/portfolio.asp?ID=195> > < http://www.freelanceforum.org/content/portfolio.asp?ID=195 <http://www.freelanceforum.org/content/portfolio.asp?ID=195> > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 Betsy- I can relate to what you said about your daughter recognizing sites when riding in the car. My daughter has had over 80 treatments and when we're in the car, she points out familiar sites and tells me when she thinks I'm not going the right way to a location. She has a better sense of direction in the car also. There is better balance and she has had no seizures- that I'm not sure if it is from changing to keppra or from the hyperbarics. Sue --- Matt Palaszynski <maplg@...> wrote: > Hi Betsy and Ed, > > I don't have the time to do it this weekend, however > I do feel the need > to lay out were I think the hope lies beyond HBOT. > > One thing that I would like to make clear is that I > do not feel that > Stem Cells are the answer. Actually for the very > same reason that I > don't feel that HBOT is the answer. > > Betsy, thanks for the e-mail and I am happy for your > improvements. I > fully understand that many parents see these types > of improvements when > they do HBOT. We saw them in Alissa as well. I > think that HBOT is > possibly acting on one of the key body systems > responsible for producing > CP issues, and I don't think it is the brain. We > have be able to > reproduce and even surpass these same results with a > combination of > other therapies directed at the same body system. > This is one of the > reasons I am convinced that HBOT is one of several > therapy's that need > to be investigated with equal vigor. > > This to me is the exciting aspect of HBOT... what > can we learn from it. > > > > Re: [ ] Re: Matt > > > Matt, > As a parent who has a child with CP and whose child > had 62 HBO > treatments so > far, my has not had the jump-out-at-your-face > improvements with > HBO, > such as talking, walking or even sitting up on her > own. However, after > the > treatments she was looser, louder with her sounds, > ate and slept better, > and > appeared more aware of things going on around her. > This noticed by me > and > family members at home who were not told of the > improvements, but > recognized > them...that was our own test so to speak. Even > though she continues not > to > talk, walk, or sit by herself, she knows the > direction she is traveling > in a > car as evidenced by turning a certain way leads to > Walmart, and another > way > not, crying when not stopping at church on the way > somewhere else > because > she had such a wonderful time at Vacation Bible > School this summer. By > the > way, when the car turns in the direction of Walmart, > the screams and > laughing begin!!! She also knows directions from > landmarks as evidenced > by > strolling. She is now playing some games with us, > simple little game > playing but that is a stage itself. > And as a parent, I will appreciate these gains, as > simple as they may > seem > to you or others, and I thank God every day for > these gains. And some > of > these gains will not have a produced by HBO tag on > them, but the > improvements were there. > And for the magical CURE for cp and other brain > injuries, the stem cell > therapy is at least 10 years away, and if you think > that they will be > offering this readily to our little babies think > again. Much will > probably > be done on the adult level first with spill over > later for the little > ones. > By that time our little ones will be teenagers. Of > course I hope and > pray > that we do not have to wait that long. And I have > also considered going > to > Europe if and when they should start providing this > to little ones if > they > beat us in the time line. > And Matt, you may not ever realize how lucky your > daughter and your > family > are that you were able to provide her with > treatments at so young an > age, > but I hope you listen to Ed's advice and do a lot of > research, then > hopefully you will. > Sincerely, > Betsy A. Tyler RN BSN CCRN MOMMIE > RE: [ ] Re: Matt > > > > Hi everyone, > > > > I feel like I am in an argument with my wife and > we are each > struggling > > to get the last word in. So I guess I want to get > a few more words in > > because I think a few of my thoughts have been > missed as this > discussion > > progressed: > > > > 1.) I am not against HBOT - I am not, and would > never, try to talk a > > potential parent out of doing HBOT. I am only > trying to provide > them > > with another perspective. > > > > 2.) I am not looking to place blame - I do not > have sour grapes > because > > Alissa is not progressing and looking to blame it > on HBOT. Quite the > > contrary, Alissa is doing fantastic! Sitting at > 14 months, sitting-up > > on her own at 16 months, combat crawling at 17 > months, transitioning > to > > four point at 19, transitioning to standing at 21 > months. Alert, > > bright, engaged, huge understood vocabulary, > strong personality. > > > > 3.) My expectations are high - To me, Alissa's > progress is to be > > expected. Why? Well because we are on top of > every aspect of Alissa's > > development and we can make sure that she > maximizes her abilities > > with-in the bounds of her injury by using a > combination of the > existing > > treatment modalities. To me this is simply the > status quo that every > > parent should be able to achieve. If not on their > own then with the > > assistance of support groups, early intervention, > their church, their > > family, whatever it takes. Parents are extremely > resourceful and > > hardworking, and almost all parents actually > achieve it. Lynnette's > > post was a good example of that. I am simply > saying, lets not stop > > there and slap each others back and say what a > great job we have done. > > Why... because our kids are still very very hurt. > I say when we > achieve > > the status quo, give yourself a night off, get the > round of > > congratulations from your support group, then come > back the next > morning > > ready to take on the real challenge... how do we > get beyond what is > > already available today. This is where I would > like to see the energy > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 Matt Palasznski I agree with you both Katy can't talk per say but when we are rideing in the car going someplace familuar it ia as if she know's she get's real excited when we go to grandma's house. She also had a reduction in sezuires and requires no medication for sezuire control. She used to have five to ten a day grandma sezuires included. HBOT is what helped her sezuires for she is on ne meds for sezuire control. Darin Support Tony For Texas Govenor and you are saying, Yes we want better Health care. He will make the difference. If you have a disabled child like me, vote for Tony. Our kid's lives depend on it. The Family Email address is Bry8825@... Visit our Daughters website @www.katysplace.fullmoonwebs.com Visit and please sign the guestbook. We have also featured an HBO child of the month on the site, this is a child receiveing Hyperbaric Oxyegen for some type of injury, these storys will break your heart. Darin age 32 Janie age32 Katlyn age 8 Or Just Click here <A HREF= " http://www.katysplace.fullmoonwebs.com/ " >Katy's Place</A> Janie is my lovely wife for fourteen years. We were married on February 13, 1988. Katy is My lovely Daughter Born on November 13, 1992. That was a miracle from God read all about it in her website <A HREF= " http://www.katysplace.fullmoonwebs.com/ " >Katy's Place</A> Just Click here. We Live In Texas Yes the southern state. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 $127.50 sent for griffith card. I do not have aol. I can speak with you by phone if you wish. Allan RE: [ ] Re: Matt > > > > > > > Hi everyone, > > > > > > I feel like I am in an argument with my wife and > > we are each > > struggling > > > to get the last word in. So I guess I want to get > > a few more words in > > > because I think a few of my thoughts have been > > missed as this > > discussion > > > progressed: > > > > > > 1.) I am not against HBOT - I am not, and would > > never, try to talk a > > > potential parent out of doing HBOT. I am only > > trying to provide > > them > > > with another perspective. > > > > > > 2.) I am not looking to place blame - I do not > > have sour grapes > > because > > > Alissa is not progressing and looking to blame it > > on HBOT. Quite the > > > contrary, Alissa is doing fantastic! Sitting at > > 14 months, sitting-up > > > on her own at 16 months, combat crawling at 17 > > months, transitioning > > to > > > four point at 19, transitioning to standing at 21 > > months. Alert, > > > bright, engaged, huge understood vocabulary, > > strong personality. > > > > > > 3.) My expectations are high - To me, Alissa's > > progress is to be > > > expected. Why? Well because we are on top of > > every aspect of Alissa's > > > development and we can make sure that she > > maximizes her abilities > > > with-in the bounds of her injury by using a > > combination of the > > existing > > > treatment modalities. To me this is simply the > > status quo that every > > > parent should be able to achieve. If not on their > > own then with the > > > assistance of support groups, early intervention, > > their church, their > > > family, whatever it takes. Parents are extremely > > resourceful and > > > hardworking, and almost all parents actually > > achieve it. Lynnette's > > > post was a good example of that. I am simply > > saying, lets not stop > > > there and slap each others back and say what a > > great job we have done. > > > Why... because our kids are still very very hurt. > > I say when we > > achieve > > > the status quo, give yourself a night off, get the > > round of > > > congratulations from your support group, then come > > back the next > > morning > > > ready to take on the real challenge... how do we > > get beyond what is > > > already available today. This is where I would > > like to see the energy > > > === message truncated === > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 A very excellent movie. I own Lorenzo's oil. Another good one is " First do no harm. " About a mother who has an epileptic son, whom doctors wish to give a drug where the bottom of a Styrofoam cup just drops out onto the ICU floor. They want to give this highly corrosive drug to the child to try to stop his seizures, and the Mom is flabbergasted that something that potent is given to humans. She goes on a quest, even just showing up on the door step of Hopkins to get her son evaluated for the Ketogenic diet to help control his seizures. (Again an instance where the doctors knew about the Keto diet, and NEVER even offered the information to the Mom.) She found it through doing her own research at the library. Hugs Tammy & Nate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 >Thanks Ed, no, I didn't know about these studies. Its interesting, as I >wasn't even pushing HBOT (not yet, LOL) I was just mentioning that she'd >been, and he was excessively defensive in my opinion. But then again, long, >irrelevant story, but I've caught him in a lie before, so I kinda knew what >to expect. He was our first neuro 11 yrs ago. Ellen > >long, >irrelevant story, Ellen, It's not irrelevant if you caught a pediatric neurologist in deceit. They are much of the problem, not the answer. 15 years ago a movie was released called " Lorenzo's Oil " (every parent of a brain-injured child should watch it). It was the story of how a mom and dad never stopped asking questions and never stopped looking for answer. Finally they discovered a way to process olive oil (not a pharmaceutical) that would halt the progression of their child's neurodegenerative disorder. Today, pediatric neurologists rarely even mention it--let alone prescribe it. In fact, two or three subsequent studies have been done that " disprove " the benefits of Lorenzo's oil. Yet the disease causes death in early adolesence (sp?)--and now Lorenzo is 25. Yeah, right, it doesn't work. I would be interested in hearing your >long, >irrelevant story ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ " Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight. Do not be wise in your own eyes; fear the LORD and shun evil. " [Prov. 3:5-7] Freels 2948 Windfield Circle Tucker, GA 30084-6714 770/491-6776 (phone and fax) 509/275-1618 (efax, sends fax as email attachment) mailto:dfreels@... http://www.freelanceforum.org/content/portfolio.asp?ID=195 Quote Link to comment Share on other sites More sharing options...
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