Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 No one thing is recovering my child, it's everything together over years. Hbot has been good for my son and we did purchase a home chamber. If I had to list the order of importance I'd say BE diet first, supplements/Hbot second, ABA third, cranial sacral/sauna 4th. All really important, but working together. > > I just saw my DAN! and my son has PANDAS and there seems to be no > change in him after IVIG..supplements..she suggested HBOT..I'd like > tohear from others if this is worth the $$$ or just a way to get folks > to use her chamber in her office? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 > > I just saw my DAN! and my son has PANDAS and there seems to be no > change in him after IVIG..supplements..she suggested HBOT..I'd like > tohear from others if this is worth the $$$ or just a way to get folks > to use her chamber in her office? > We did 200 dives of soft chamber mild HBOT 1-1 1/2 hrs./day he was doing great more eye contact, awareness better, skin color good,a happy child then started valtrex while doing HBOT he then got chronic strep (2-3 different kinds of strep in his gut. now he has all symptoms of PANDAS he continued getting worse we found out oxygen was feeding the strep so we immediately stopped. Now he is on zithro. How many IVIG treatments did he have? I read sometimes several treatments before seeing positives with some kids. We are staying away from the HBOT while battling strep. Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 Carole...wow..how long are you on azithromycin?? We have had one IVIG and supposed to get another july 10th..I amy use azith after that if there is no improvement..I'm still thinking about the HBOT??Did you rent?? > > > > I just saw my DAN! and my son has PANDAS and there seems to be no > > change in him after IVIG..supplements..she suggested HBOT..I'd like > > tohear from others if this is worth the $$$ or just a way to get > folks > > to use her chamber in her office? > > > > > We did 200 dives of soft chamber mild HBOT 1-1 1/2 hrs./day he was > doing great more eye contact, awareness better, skin color good,a happy > child then started valtrex while doing HBOT he then got chronic strep > (2-3 different kinds of strep in his gut. > now he has all symptoms of PANDAS he continued getting worse we found > out oxygen was feeding the strep so we immediately stopped. Now he is > on zithro. > How many IVIG treatments did he have? I read sometimes several > treatments before seeing positives with some kids. > We are staying away from the HBOT while battling strep. > Carole > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 I spent a few hours with Dr Goldberg today and he is dead set against HBOT...his attitude is lots of things " work " or look like they do, but the gains are temp and often create new and worse issues or mask consequences of other things that need to be addressed even more...of course, he is a BIG viral guy, and believes the autism epidemic is actually a disease epidemic and that we are seeing automimmune diseases and illness, not autism at all since almost all our kids do not fit the autism scenario diagnostically. I cannot tell you if he is right or not, but he says that HBOT has never recovered anyone, it has harmed many and nobody should be pushing oxygen around in a kid who might have serious viral issues as the brain is trying to protect itself from the very thing that forced oxygen will push into it...our friends actually got an hbot in their home and did the whole thing, they are also on scd, did valtrex and the comprehensive strategy under West...and are now in G's care seeing the first real and lasting gains they have ever seen - their son, Adam, is almost 6 now...they did everything before finding their way to Goldberg. If they could go back and re-do they have told me they would not do the HBOT. He is putting Matt on Famvir based on his blood panels and other tests...I cannot tell you how Matt will do in his care, but those I have met with recovered kids from the DAN protocol and the Pfeiffer Treatment Center - well, there kids are not recovered and that is why we decided to give Dr. G a full listen....our friends' kids remain on supplements, strict diets, still have yeast issues or viral ones, and big improvements, true, but c and d performance in school, attention issues, and one kid has no peripheral vision despite having been on CLO for years now...but G says that HHV6 attacks places in the brain that can affect vision - " that kid never had the underlying VIRAL issue addressed and all that megadosing of vits and so on simply masked that by suppressing or improving the SYMPTOMOLOGY, that's all - meanwhile the viruses go on hurting and injuring, but the vitamins make him look like he is doing much better and is healthier...and black coffee will move your kids' bowels, but it will not fix the underlying cause of a digestive disorder or milk allergy that results in chronic constipation. You do not say a person's cancer is in remission bc they look good or act okay - you rely on REAL tests, impartial lab work and so on. " When someone claims a recovered kid they should be willing to have all the bloodwork and scans done on that child and published to prove that the recovery on a brain and blood level is legitimate and not just wishful thinking or promotion of their protocal/clinic/supplement etc...whew. He is hardcore and really pissed off that so many are so sick out there with very little medical attention being paid to all the obvious - i his opinion-signs of ILLNESS in our kids. I can see why he is not well liked in the DAN camp - since he thinks that many of their recoveries are not recoveries at all... " they only get away with it bc they start from a false premise of an incurable disease - autism - therefore any improvement is a miracle and they are not responsible for any harm they actually do bc the kid was beyond broken in the first place...unless that kid never had autism in the first place but was really very sick with a real and treatable illness...then people would not be so thrilled with half assed recovery and ongoing chronic illnesses... " I do not know if this helps you or not, but I would try a consult with this dr beofe I would spend a fortune on many alternative treatments that cannot cure a viral issues if your child has one and that is really what is going on...not yeast, not allergies, not the shots....he told me that men affected with HIV have terrible Candida issues too and those are only addressed by dealing with the HIV...yeast does not cause HIV, yeast happens in repsonse to HIV...and so it is with all the symptoms you are seeing with your son's illness, not his autism, his ILLNESS, per Goldberg. " You do not treat this illness with vitamins, hbot, and just diet changes. " There was a mom in his waiting room whose son was a mess a year ago and this kid looked great and acted so normal...he eats some things that I would be terrified to feed Matt, and yet - it just isn't a big issue for him with the medications in place...!!!?? We will continue to feed Matt the healthiest diet possible, but it was pretty amazing to see a kid doing so well on a a protocol that did not include a inspired diet intervention...her son's bowel issues, his alleriges and sensitivities, and many of his sensory integration and yeast issues went away when his viral titers started to normalize...???!! Good luck. Hbot is expensive, but that does not matter - if it is dangerous or distracting a parnet from really improving their child's health THAT matters...Di > > > > I just saw my DAN! and my son has PANDAS and there seems to be no > > change in him after IVIG..supplements..she suggested HBOT..I'd like > > tohear from others if this is worth the $$$ or just a way to get > folks > > to use her chamber in her office? > > > > > We did 200 dives of soft chamber mild HBOT 1-1 1/2 hrs./day he was > doing great more eye contact, awareness better, skin color good,a happy > child then started valtrex while doing HBOT he then got chronic strep > (2-3 different kinds of strep in his gut. > now he has all symptoms of PANDAS he continued getting worse we found > out oxygen was feeding the strep so we immediately stopped. Now he is > on zithro. > How many IVIG treatments did he have? I read sometimes several > treatments before seeing positives with some kids. > We are staying away from the HBOT while battling strep. > Carole > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Stan did HBOT with his son when he was near recovery...and is on a diet intervention that addresses the viral and fungal infections - successfully implementing it and her son is doing really well...I think parents need to be carfeful doing BHOT early on in hopes that it is the cure...if you put a sicjk and very infected kid into one of those things I think you can do more harm than good..that was our frineds' experience...they did it and after it was a flop went SCD and started the antivirals etc...those things should have happened in the opposite order I suspect. Hbot was a very bad move for them, so it matters whta you do before you try it I think...--- In mb12 valtrex , " tylertaylin " wrote: > > No one thing is recovering my child, it's everything together over > years. Hbot has been good for my son and we did purchase a home > chamber. If I had to list the order of importance I'd say BE diet > first, supplements/Hbot second, ABA third, cranial sacral/sauna 4th. > All really important, but working together. > > > > > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be no > > change in him after IVIG..supplements..she suggested HBOT..I'd like > > tohear from others if this is worth the $$$ or just a way to get > folks > > to use her chamber in her office? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 , we do not have any detailed studies on any treatment for ASD !! If it was down to just following detailed proven studied treatments for ASD there would be no treatments and no kids recovering.... I do not disagree with your other points (well, not completely), but that statement I really take issue with. Notwithstanding SAFETY issues of course, that is first and foremost... but when it comes to efficacy of treatments for ASD I would trust parental reports over scientific studies anytime! (that is not to say that efficacy studies are not needed, they are indeed). Also another point I want to raise in this debate on treating the 'core' issues of autism illness (and I do agree with the disease theory) is that core problems not necessarily exist on their own, as there is more than enough science to show that the issues we encounter in our kids work in synergy ... in other words an underlying chronic viral infection will be made worse/more chronic/more damaging to cells buy underlying toxic issues... and vice versa - toxins will accumulate in the presence of viruses.... At the same time lack of oxygen will make cells more vulnerable to viral proteins and to bacterial toxins and so on and on .... Natasa Natasa x > > > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be no > > > > change in him after IVIG..supplements..she suggested HBOT..I'd > > like > > > > tohear from others if this is worth the $$$ or just a way to get > > > folks > > > > to use her chamber in her office? > > > > > > > > > > > > > We did 200 dives of soft chamber mild HBOT 1-1 1/2 hrs./day he was > > > doing great more eye contact, awareness better, skin color good,a > > happy > > > child then started valtrex while doing HBOT he then got chronic > > strep > > > (2-3 different kinds of strep in his gut. > > > now he has all symptoms of PANDAS he continued getting worse we > > found > > > out oxygen was feeding the strep so we immediately stopped. Now he > > is > > > on zithro. > > > How many IVIG treatments did he have? I read sometimes several > > > treatments before seeing positives with some kids. > > > We are staying away from the HBOT while battling strep. > > > Carole > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 In the case of no studies, you are still able to try and find "as many independent sources" as possible. There are plenty of relevant studies Natasa. But I'm not even going to argue about it. If you want to believe there are no relevant studies, then I guess in your world, there are none. There are plenty of parents who still believe no treatments work for their ASD kids, do you want to believe them too? And on the core issues, did anyone even say they exist on their own? I think you may have projected some of your own opinions onto my statements Natasa and heard something that I did not say. natasa778 wrote: , we do not have any detailed studies on any treatment for ASD !! If it was down to just following detailed proven studied treatments for ASD there would be no treatments and no kids recovering.... I do not disagree with your other points (well, not completely), but that statement I really take issue with. Notwithstanding SAFETY issues of course, that is first and foremost... but when it comes to efficacy of treatments for ASD I would trust parental reports over scientific studies anytime! (that is not to say that efficacy studies are not needed, they are indeed). Also another point I want to raise in this debate on treating the 'core' issues of autism illness (and I do agree with the disease theory) is that core problems not necessarily exist on their own, as there is more than enough science to show that the issues we encounter in our kids work in synergy ... in other words an underlying chronic viral infection will be made worse/more chronic/more damaging to cells buy underlying toxic issues... and vice versa - toxins will accumulate in the presence of viruses.... At the same time lack of oxygen will make cells more vulnerable to viral proteins and to bacterial toxins and so on and on .... Natasa Natasa x > > > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be no > > > > change in him after IVIG..supplements..she suggested HBOT..I'd > > like > > > > tohear from others if this is worth the $$$ or just a way to get > > > folks > > > > to use her chamber in her office? > > > > > > > > > > > > > We did 200 dives of soft chamber mild HBOT 1-1 1/2 hrs./day he was > > > doing great more eye contact, awareness better, skin color good,a > > happy > > > child then started valtrex while doing HBOT he then got chronic > > strep > > > (2-3 different kinds of strep in his gut. > > > now he has all symptoms of PANDAS he continued getting worse we > > found > > > out oxygen was feeding the strep so we immediately stopped. Now he > > is > > > on zithro. > > > How many IVIG treatments did he have? I read sometimes several > > > treatments before seeing positives with some kids. > > > We are staying away from the HBOT while battling strep. > > > Carole > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 > > He is putting Matt on Famvir based on his blood panels and > other tests > > Hi Di, would you know what tests dr G uses to inform decision on > treatments? viral titers?? > > tia > Natasa Dr. G is very negative towards HBOT & Vitamin supplematation. I heard it straight from his mouth! I have a problem with doctors who say " I have never met anyone recovered from HBOT in my practice " . DUH....Would they be going to your practice? There are people out there. I heard Neubrander is keeping a count in his practice. Also, There is a HUGE difference between mild & hard chamber. READ and research this issue. Like Yeast can be killed in the gut doing HBOT @ 2.2 ATA or higher. Most Autism doctors will not recommend that for children because of the Hyperbaric associations guidelines. 2.0ATA is generally safe for children. Just my 2 cents worth. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 If I may say something about HBOT from the meek and mild point of view. When I first heard about it, HBOT sounded like something wealthy people use to throw money at their kid's autism--just weird, expensive, and off-the-wall. At that time (pre-Rossignol, in our treatment program), the concept of oxidative stress was not explained to me, nor the connection between providing extra oxygen to aide successful detoxification from heavy metals, and as a means of healing the brain. We first used HBOT for a two-week treatment period (20 hours) at the ICDRC during the spring of 2007. 40 hours is an ideal trial, but we could not afford to be away for 4 weeks. Our son also received chelating IVs during the two weeks. After we returned home, we did see a noticable jump in our son's reaction time to questions, vocabulary, length of sentences, etc., and after some months of additional study/thinking about it, I asked Dr. Rossignol about whether or not we should get a home chamber. He replied by asking me if I thought HBOT had helped my son. No hard sell, just a simple question. The answer was "yes," and we finally ended up renting, then buying a chamber. Over the past year we have seen our son make great progress in his language ability, his moods, and even general growth. For certain kids, this is a really good therapy, but you need to do a trial of 20, 30, 40 hours to determine if it helps. It's not a matter of guilt or opinion, but rather looking at diagnostic reports with the help of a DAN physician, trying stuff that addresses the specific damage that was done to your child, and seeing what works. Sue M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Just paying attention to parent reports, HBOT seems to be a very mixed bag. Some kids improve, some kids improve then lose the improvements and more kids than I am comfortable with, get worse. It's interesting to note that in the beginning HBOT was touted as a totally safe therapy that ALL Asd kids would benefit from. This is the EXACT message with any therapy that makes me stay away from it. If and when they are able to figure out *when* HBOT should be used and *when* it shouldn't be used, I wouldn't do it, fwiw. I asked the ? early on what the contraindications were for HBOT and was told by all that there were none....this alone makes me very nervous. Same with mb12 shots, good for all, right? Not so. Re: ??Is HBOT worth it??? Stan did HBOT with his son when he was near recovery...and is on a diet intervention that addresses the viral and fungal infections - successfully implementing it and her son is doing really well...I think parents need to be carfeful doing BHOT early on in hopes that it is the cure...if you put a sicjk and very infected kid into one of those things I think you can do more harm than good..that was our frineds' experience...they did it and after it was a flop went SCD and started the antivirals etc...those things should have happened in the opposite order I suspect. Hbot was a very bad move for them, so it matters whta you do before you try it I think...> >> > I just saw my DAN! and my son has PANDAS and there seems to be no > > change in him after IVIG..supplements..she suggested HBOT..I'd like > > tohear from others if this is worth the $$$ or just a way to get > folks > > to use her chamber in her office? > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 We saw no gains from 40 hours hard chamber HBOT. > > We saw no gains from HBOT> > > ??Is HBOT worth it??? > > > I just saw my DAN! and my son has PANDAS and there seems to be no > change in him after IVIG..supplements..she suggested HBOT..I'd like > tohear from others if this is worth the $$$ or just a way to get folks > to use her chamber in her office? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 If only ALL our kids were alike - treating the "autism" would be so much easier. Unfortunately, our kids are not all alike - some treatments work for some and some don't. We saw great improvements with HBOT but I have friends who saw no improvements with their child. We tried "the diet" and no improvements. My son is not a yeasty kid. He has no problems with transitioning, has never been a "have to follow a routine" kinda guy, etc. He never flapped, or walked on his tip toes. If all the kids with autism were the same, life would be so much easier. I research different treatments. Speak to our DAN - do bloodwork for what we can and try different things to see if there are any improvements. Subject: Re: ??Is HBOT worth it???To: mb12 valtrex Date: Saturday, June 28, 2008, 3:58 AM , I am very well aware of many independent studies on many aspects of autism, including relevant treatments, and I am very well aware of many studies on HBO, which are relevant to some of the "autisms". When you say that "think the jury is still out on HBOT as a treatment for ASD. We certainly do not have enough detailed studies to be sure", (your words) then you can certainly apply that statement to ANY other treatment for autism. That is all I'm trying to say.There is absolutely NOTHING in autism that the jury has has reached an anonymous decision on!!! There isn't even one aspect of autism - etiological, pathological, clinical or therapeutic, that everyone agrees on.It is just not right to cite the lack of studies as evidence that treatment may not be suitable. Natasa> > > > > >> > > > > > I just saw my DAN! and my son has PANDAS and there seems to be> > no> > > > > > change in him after IVIG..supplements. .she suggested HBOT..I'd> > > > like> > > > > > tohear from others if this is worth the $$$ or just a way to get> > > > > folks> > > > > > to use her chamber in her office? > > > > > >> > > > >> > > > > > > > > > We did 200 dives of soft chamber mild HBOT 1-1 1/2 hrs./day he was> > > > > doing great more eye contact, awareness better, skin color good,a> > > > happy> > > > > child then started valtrex while doing HBOT he then got chronic> > > > strep> > > > > (2-3 different kinds of strep in his gut.> > > > > now he has all symptoms of PANDAS he continued getting worse we> > > > found> > > > > out oxygen was feeding the strep so we immediately stopped. Now he> > > > is> > > > > on zithro.> > > > > How many IVIG treatments did he have? I read sometimes several> > > > > treatments before seeing positives with some kids.> > > > > We are staying away from the HBOT while battling strep.> > > > > Carole> > > > >> > > >> > > >> > >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be no > > > change in him after IVIG..supplements..she suggested HBOT..I'd > like > > > tohear from others if this is worth the $$$ or just a way to get > > folks > > > to use her chamber in her office? > > > > > > > > > We did 200 dives of soft chamber mild HBOT 1-1 1/2 hrs./day he was > > doing great more eye contact, awareness better, skin color good,a > happy > > child then started valtrex while doing HBOT he then got chronic > strep > > (2-3 different kinds of strep in his gut. > > now he has all symptoms of PANDAS he continued getting worse we > found > > out oxygen was feeding the strep so we immediately stopped. Now he > is > > on zithro. > > How many IVIG treatments did he have? I read sometimes several > > treatments before seeing positives with some kids. > > We are staying away from the HBOT while battling strep. > > Carole > > > Both grandparents went together bought the soft chamber. My grandson has been on zithro 2 wks. We do have an apt. with Dr. Goldberg end of July.We`re from Ohio no one in this state can treat what is physically going on with him. We`re praying Dr. G can help him. Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 This may sound wishy washy for some, but in navigating all of this I found it vital to learn how to follow my instincts. Something I wish I had done prior to my allowing a csection, vaccinations etc..... I really believe that if it seems wrong it's not the right time. If you feel drawn in a certain direction it's worth checking into. Anytime someone says they have " the answer " whether which diet, therapy, or approach......I'd run in the opposite direction. I think it's rare to have silver bullet kids. I think overall we are seeing that taking away what harms and learning how to bring the immune system back into balance helps a great deal. It can get pretty scary when you see a kid doing well with RDI or other intervention and you haven't even checked into it yet for your kid. But I've learned that all the kids are different and what works for one family may not be the right time for another. As with Hbot I was too scared to do it a year ago, and recently had a doc I like say NOT to do it. I had to follow my instincts on this and I have since left that doc because we aren't on the same page. I am glad we have Hbot and I see improvements for the whole family. However we've put a lot of time into laying a foundation first before trying these types of interventions. Most of all I feel it helps to understand your own body. When you study your own issues it helps you to understand your child's issues. Though I wasn't insulted with vaccines as my son was....he did come from me and my history plays a role in his recovery. Blessings > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be no > > > change in him after IVIG..supplements..she suggested HBOT..I'd > like > > > tohear from others if this is worth the $$$ or just a way to get > > folks > > > to use her chamber in her office? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 I think that as with any other treatment, timing is important with HBOT. Also, if HBOT is done as a sole treatment modality on kids who need immune support or detox poorly, I can see why things might get worse. HBOT was a miracle for my son's chronic infections, but some of those returned when we stopped it. We are raising the money to buy a chamber for in home use. I do think that immune support and detox support are critical for some kids. I wish we had started LDN before the HBOT, not after. Nonetheless, if you ask , he will tell you himself that HBOT has been the most effective intervention Subject: Re: Re: ??Is HBOT worth it???To: mb12 valtrex Date: Saturday, June 28, 2008, 8:04 AM Just paying attention to parent reports, HBOT seems to be a very mixed bag. Some kids improve, some kids improve then lose the improvements and more kids than I am comfortable with, get worse. It's interesting to note that in the beginning HBOT was touted as a totally safe therapy that ALL Asd kids would benefit from. This is the EXACT message with any therapy that makes me stay away from it. If and when they are able to figure out *when* HBOT should be used and *when* it shouldn't be used, I wouldn't do it, fwiw. I asked the ? early on what the contraindications were for HBOT and was told by all that there were none....this alone makes me very nervous. Same with mb12 shots, good for all, right? Not so. Re: ??Is HBOT worth it??? Stan did HBOT with his son when he was near recovery...and is on a diet intervention that addresses the viral and fungal infections - successfully implementing it and her son is doing really well...I think parents need to be carfeful doing BHOT early on in hopes that it is the cure...if you put a sicjk and very infected kid into one of those things I think you can do more harm than good..that was our frineds' experience.. .they did it and after it was a flop went SCD and started the antivirals etc...those things should have happened in the opposite order I suspect. Hbot was a very bad move for them, so it matters whta you do before you try it I think...> >> > I just saw my DAN! and my son has PANDAS and there seems to be no > > change in him after IVIG..supplements. .she suggested HBOT..I'd like > > tohear from others if this is worth the $$$ or just a way to get > folks > > to use her chamber in her office? > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 > > > > We saw no gains from HBOT> > > > > ??Is HBOT worth it??? > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be > no > > change in him after IVIG..supplements..she suggested HBOT..I'd > like > > tohear from others if this is worth the $$$ or just a way to get > folks > > to use her chamber in her office? > > > I`ve been reading all these post on HBOT For my grandson we did a 2-3 wk. trial at tour DAN`s office & read studies one study from Congresman Dan Burton saying HBOT was sucessful treatment for autism. That study stays with me it was posted on a gov. web page. For my grandson the trial showed us with eye contact, ind. play,ind speech, awareness, less stimming all these positives told us we should buy one. We did 200 dives 1-1 1/2 hr./day doing great also starting valtrex after 1 month of HBOT then testing showed major STREP in gut everything only got worse with him we later heard(would love for someone to comment on this)OXYGEN FEEDS STREP now this child meets all criteria for PANDAS so we have stopped valtrex & HBOT now he is on zithro waiting apt with Dr, G. I am writing this I think we should be very careful I agree with Kenny some of these Docs are not giving the best guidance. We found this out to late we are praying Dr. G. can help this little boy. Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 From what I have learned at the conference I attended in November, many children need 80 or more sessions of HBOT. If you just stop and 40 (and believe me, I know the financial burden of these treatments. Hence the reason we have yet to do HBOT) then you may miss out on the gains that could happen at 80 treatments, 120 treatments, or 300 treatments. I guess that is where purchasing a home chamber would be beneficial. Believe me I am still researching all of this as well and working to get BEDiet in place along side current SCDiet and doing several months of natural antivirals and chelation before we even consider trying HBOT. Dana and Garrett, just turned 4, SCD 2 yearsCeliac, ASD, Speech and Motor Apraxia, sensory processing disorder Subject: Re: ??Is HBOT worth it???To: mb12 valtrex Date: Saturday, June 28, 2008, 1:32 PM > >> > We saw no gains from HBOT>> > > > ??Is HBOT worth it???> > > > > > I just saw my DAN! and my son has PANDAS and there seems to be > no > > change in him after IVIG..supplements. .she suggested HBOT..I'd > like > > tohear from others if this is worth the $$$ or just a way to get > folks > > to use her chamber in her office? > >>I`ve been reading all these post on HBOT For my grandson we did a 2-3 wk. trial at tour DAN`s office & read studies one study from Congresman Dan Burton saying HBOT was sucessful treatment for autism. That study stays with me it was posted on a gov. web page. For my grandson the trial showed us with eye contact, ind. play,ind speech, awareness, less stimming all these positives told us we should buy one. We did 200 dives 1-1 1/2 hr./day doing great also starting valtrex after 1 month of HBOT then testing showed major STREP in gut everything only got worse with him we later heard(would love for someone to comment on this)OXYGEN FEEDS STREP now this child meets all criteria for PANDAS so we have stopped valtrex & HBOT now he is on zithro waiting apt with Dr, G.I am writing this I think we should be very careful I agree with Kenny some of these Docs are not giving the best guidance. We found this out to late we are praying Dr. G. can help this little boy. Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 I watched the video and saw the changes in teh little boy in it...I also saw big liter bottles of coke and sugary sodas on the countertops and a big cookie drop into the screen that someone was eating...HBIT is very expensive and though even Goldberg says " It looks like its working in some kids...but teh spec scans say toherwise and they also show damage in many cases... " I would focus on diet, look into antivirals and bring down the viral load if there is one before I would go into hbot stuff...I think it is important that Stan's kid embarked on this when he was almost recovered and not as an initial intervention, but I am biased bc I have not seen or met any kids so far recovered on megadose vits and supps, hbot. and so on...I have met and know of two kids who were both hurt by these approaches. One is now in the care of GOldberg and doing well and the other is still trying to figure out why her son has no peripheral vision when she has been doing CLO for years now among other things...he is reoovered but makes only c and d marks in school, has yeast issues, tends to get sick often, and has some scary vision problems....all of which lead me to think that her kid probably has a viral issue not addressed by all that she tried....thank god she didn't do hbot, though I know it seems to help some....I would just look nto the viral thing first, personally, and s0pend the money on getting to a NIDs guy not a DAn one for a consult...don't just ask parents ask those with medical and scientific reasons for being against it and then make your choice...Di > > > > We saw no gains from HBOT> > > > > ??Is HBOT worth it??? > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be > no > > change in him after IVIG..supplements..she suggested HBOT..I'd > like > > tohear from others if this is worth the $$$ or just a way to get > folks > > to use her chamber in her office? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Exactly right...I hope this post does not fall on deaf ears bc I can only imagine how hard you worked on the diet and getting him ready for everything you are doing now...I think the ones that seem to do best on this have made progress on the gut issues or never were severe with them...but I cannot back it up - it is just a hunch. Di-- - In mb12 valtrex , " tylertaylin " wrote: > > This may sound wishy washy for some, but in navigating all of this I > found it vital to learn how to follow my instincts. Something I wish > I had done prior to my allowing a csection, vaccinations etc..... > > I really believe that if it seems wrong it's not the right time. If > you feel drawn in a certain direction it's worth checking into. > > Anytime someone says they have " the answer " whether which diet, > therapy, or approach......I'd run in the opposite direction. > > I think it's rare to have silver bullet kids. I think overall we > are seeing that taking away what harms and learning how to bring the > immune system back into balance helps a great deal. It can get > pretty scary when you see a kid doing well with RDI or other > intervention and you haven't even checked into it yet for your > kid. But I've learned that all the kids are different and what > works for one family may not be the right time for another. > > As with Hbot I was too scared to do it a year ago, and recently had a > doc I like say NOT to do it. I had to follow my instincts on this > and I have since left that doc because we aren't on the same page. > > I am glad we have Hbot and I see improvements for the whole family. > However we've put a lot of time into laying a foundation first before > trying these types of interventions. > > Most of all I feel it helps to understand your own body. When you > study your own issues it helps you to understand your child's > issues. Though I wasn't insulted with vaccines as my son was....he > did come from me and my history plays a role in his recovery. > > Blessings > > > > > > > > > > > > > > > I just saw my DAN! and my son has PANDAS and there seems to be > no > > > > change in him after IVIG..supplements..she suggested HBOT..I'd > > like > > > > tohear from others if this is worth the $$$ or just a way to > get > > > folks > > > > to use her chamber in her office? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 ALl the tests are on his site and he will write an order for the tests so you can have them before the consult. If you attempt antivirals with aDAN just be careful that you do not have the same problem we did - beyond valtrex she had no clue what to do next and our son needed to rotate something else in...we pulled the rxs and watched as we lost precious gains and wasted all that time and money. There may be DANs who are good with the antiviral thing, but ours wasn't. M has one of the best DANs in the whole country and she never did the antiviral approach and openly says her son is still on the spectrum with issues. I do not know why she never tried to address the viral stuff unless her DAN discouraged it...if your tests confirm viral issues, find a viral experienced person to navigate your son's recovery. I do no t know if Dr G is the guy or not as we have jsut started with him, but he makes a very compelling cse, as does Stan, for this this being a BIG part of most of our kids' stuff...men who have HIV have tpo struggle with yeast, but yeast does not give anyone HIV, get my drift? Di > > He is putting Matt on Famvir based on his blood panels and > other tests > > Hi Di, would you know what tests dr G uses to inform decision on > treatments? viral titers?? > > tia > Natasa > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2008 Report Share Posted July 1, 2008 Don't draw any conclusions about the supps thing just yet-if there's a severe infection, it can appear that nothing is working. I empathize with how you are feeling. My son went to bed one night with a headache and literally woke up the next day a different person. His primary wanted him hospitalized for "bipolar" but I said no, as his feet and legs were turning blue and he had lumps the size of marbles in his neck. It took, 6 months before anyone would acknowledge that there was a physical problem, even though he had green goo coming out his nose and he had pneumonia that wouldn't clear. It was another 6 months before the specific infection-toxoplasmosis was found. The only way it ever happened is that he would improve on antibiotics then be out of his head again after he had been off of them for a week. Kerry, stand on their toes and insist that they do the right thing for your son. If you ever want to talk e-mail me Subject: Re: Re: ??Is HBOT worth it???To: mb12 valtrex Date: Monday, June 30, 2008, 8:34 PM PANDAS. But he wasn't diagnosed until many months after the symptoms started and no one at the DANs office seemed concerned about his rapid decline until I asked for a test for PANDAS. funny thing, I took my kid off ALL supplements because he has surgery coming up. It's been a full week and there is not a difference in my child at all Kerrie In a message dated 6/29/2008 9:27:57 A.M. Eastern Daylight Time, nenodalmaholidays (DOT) co.uk writes: I'm so sorry to hear that happened to your kid. Do you know now whatcaused it?natasa x Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2008 Report Share Posted July 3, 2008 We saw no gains tooLiz ??Is HBOT worth it??? I just saw my DAN! and my son has PANDAS and there seems to be no change in him after IVIG..supplements. .she suggested HBOT..I'd like tohear from others if this is worth the $$$ or just a way to get folks to use her chamber in her office? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 That is our struggle with SCD too...K hates the grains on the BED for weak or injured guts, white rice only, per him as it is the easiest to digest and gives a bit of carbs...what 8 foods were you on and how did you rotate them? > > > > > > > > > > > > > > I just saw my DAN! and my son has PANDAS and there > seems > > to > > > be no > > > > > > > change in him after IVIG..supplements..she suggested > > HBOT..I'd > > > > > like > > > > > > > tohear from others if this is worth the $$$ or just a > way > > to > > > get > > > > > > folks > > > > > > > to use her chamber in her office? > > > > > > > > > > > > > > > > > > > > > > > > > We did 200 dives of soft chamber mild HBOT 1-1 1/2 > hrs./day > > he > > > was > > > > > > doing great more eye contact, awareness better, skin > color > > > good,a > > > > > happy > > > > > > child then started valtrex while doing HBOT he then got > > chronic > > > > > strep > > > > > > (2-3 different kinds of strep in his gut. > > > > > > now he has all symptoms of PANDAS he continued getting > > worse we > > > > > found > > > > > > out oxygen was feeding the strep so we immediately > stopped. > > Now > > > he > > > > > is > > > > > > on zithro. > > > > > > How many IVIG treatments did he have? I read sometimes > > several > > > > > > treatments before seeing positives with some kids. > > > > > > We are staying away from the HBOT while battling strep. > > > > > > Carole > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > ---------- > > > > > > > > No virus found in this incoming message. > > Checked by AVG. > > Version: 8.0.101 / Virus Database: 270.4.3/1526 - Release Date: > 6/30/2008 8:43 AM > > > > > > > No virus found in this incoming message. > Checked by AVG - http://www.avg.com > Version: 8.0.138 / Virus Database: 270.4.5/1537 - Release Date: 7/6/2008 5:26 AM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2008 Report Share Posted July 7, 2008 dana~ you are such a great mama good luck and keep us updated on progress...... kristin From: diatplay <diatplayyahoo (DOT) com>Subject: Re: ??Is HBOT worth it???To: mb12 valtrex@ yahoogroups. comDate: Sunday, July 6, 2008, 7:10 PM Dana did the antiviral approach not work for your kids? Di> > > > > > >> > > > > > > I just saw my DAN! and my son has PANDAS and there > seems > > to > > > be no> > > > > > > change in him after IVIG..supplements. .she suggested > > HBOT..I'd> > > > > like> > > > > > > tohear from others if this is worth the $$$ or just a > way > > to > > > get> > > > > > folks> > > > > > > to use her chamber in her office? > > > > > > >> > > > > >> > > > > > > > > > > > We did 200 dives of soft chamber mild HBOT 1-1 1/2 > hrs./day > > he > > > was> > > > > > doing great more eye contact, awareness better, skin > color > > > good,a> > > > > happy> > > > > > child then started valtrex while doing HBOT he then got > > chronic> > > > > strep> > > > > > (2-3 different kinds of strep in his gut.> > > > > > now he has all symptoms of PANDAS he continued getting > > worse we> > > > > found> > > > > > out oxygen was feeding the strep so we immediately > stopped. > > Now > > > he> > > > > is> > > > > > on zithro.> > > > > > How many IVIG treatments did he have? I read sometimes > > several> > > > > > treatments before seeing positives with some kids.> > > > > > We are staying away from the HBOT while battling strep.> > > > > > Carole> > > > > >> > > > >> > > > >> > > >> > >> > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- -> ----------> > > > > > > > No virus found in this incoming message.> > Checked by AVG. > > Version: 8.0.101 / Virus Database: 270.4.3/1526 - Release Date: > 6/30/2008 8:43 AM> >> > > > > -- > Warmest Regards,> > B. Holmes> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2008 Report Share Posted July 7, 2008 Thanks, ! I appreciate the word of encouragement! I am excited because has broken out in the torso rash I have seen pictured for viral die off. Hoping to start really seeing some improvements from here.Dana and Garrett, just turned 4, SCD 2 yearsCeliac, ASD, Speech and Motor Apraxia, sensory processing disorder From: diatplay <diatplayyahoo (DOT) com>Subject: Re: ??Is HBOT worth it???To: mb12 valtrex@ yahoogroups. comDate: Sunday, July 6, 2008, 7:10 PM Dana did the antiviral approach not work for your kids? Di> > > > > > >> > > > > > > I just saw my DAN! and my son has PANDAS and there > seems > > to > > > be no> > > > > > > change in him after IVIG..supplements. .she suggested > > HBOT..I'd> > > > > like> > > > > > > tohear from others if this is worth the $$$ or just a > way > > to > > > get> > > > > > folks> > > > > > > to use her chamber in her office? > > > > > > >> > > > > >> > > > > > > > > > > > We did 200 dives of soft chamber mild HBOT 1-1 1/2 > hrs./day > > he > > > was> > > > > > doing great more eye contact, awareness better, skin > color > > > good,a> > > > > happy> > > > > > child then started valtrex while doing HBOT he then got > > chronic> > > > > strep> > > > > > (2-3 different kinds of strep in his gut.> > > > > > now he has all symptoms of PANDAS he continued getting > > worse we> > > > > found> > > > > > out oxygen was feeding the strep so we immediately > stopped. > > Now > > > he> > > > > is> > > > > > on zithro.> > > > > > How many IVIG treatments did he have? I read sometimes > > several> > > > > > treatments before seeing positives with some kids.> > > > > > We are staying away from the HBOT while battling strep.> > > > > > Carole> > > > > >> > > > >> > > > >> > > >> > >> > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- -> ----------> > > > > > > > No virus found in this incoming message.> > Checked by AVG. > > Version: 8.0.101 / Virus Database: 270.4.3/1526 - Release Date: > 6/30/2008 8:43 AM> >> > > > > -- > Warmest Regards,> > B. Holmes> Quote Link to comment Share on other sites More sharing options...
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