Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 >I know how desparate and hopeless we all feel -- I feel the same. I work for physicians -- and I'm ashamed of those who prey on our desparation.< There is not one physician in DAN or one who has stepped outside of the box to help our kids that doesn't get denigrated by the medical establishment. I think we need to be very careful what we say about these professionals. Put another way, if they do no harm but are willing to look at the biological abnormalities in our children then they are helping the autism community. I am aware that you also don't believe vaccines have anything to do with autism, so that is a bias you have against those doctos who do think vaccines caused autisn in many children. (Dr. Mark Geier, Dr Mercola, Dr. Sherri Tenpenny, and others) The fact that you would give any credence to that news piece that is one more effort to destroy Dr. Wakefield makes me have suspicions about you. By the way, another article says attorneys are now on the case because of the slanderous allegations in that article. I do think the truth will come out in favor of these fine doctors who are putting their life and fortunes on the line for our kids. Please tell us if you have tryed any of the DAN doctor's approach to treat your child with autism, and if so, if there was harm done. When you make allegations of " quackery " you need to have scientific proof of that in my opinion. I have been following the different protocols of chelation for several years and as of yet we haven't begun that treatment. I have decided that Dr. Buttar's protocol is the one we will use. Most of us are intelligent and don't enter our kids in a treatment that is not fully researched and confirmed to be a good one. We know that not all treatments work for all children with autism, but many of them do work for some. The medical establishment has been preying on our kids in my opinion by putting them on powerful " off label " drugs one after another. Carlson Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 No harm done? That's the whole point here. When parents spend outrageous sums on, say, secretin injections. Maybe the injections do no harm (of course, they hurt), but when that money ISN'T invested in ABA, or speech therapy, OT, etc..., there is harm. If the DAN docs are siphoning off funds that might otherwise go to solid research by an organization like NAAR, there is harm. And if someone's unvaccinated child carries measles or pertussis to a little boy or girl who is immunocompromised, there is harm. I pray to God there's no measles epidemic in London or Dublin or Belfast this winter. We forget that measles KILLS kids. By the way, if you want to read some real attack journalism on Andy Wakefield, see Dr. Fitzpatrick's latest diatribe at http://www.spiked-online.com/Printable/0000000CA7C7.htm Yours, Steve Levine Austin Re: Quackery or Pioneers? >I know how desparate and hopeless we all feel -- I feel the same. I work for physicians -- and I'm ashamed of those who prey on our desparation.< There is not one physician in DAN or one who has stepped outside of the box to help our kids that doesn't get denigrated by the medical establishment. I think we need to be very careful what we say about these professionals. Put another way, if they do no harm but are willing to look at the biological abnormalities in our children then they are helping the autism community. I am aware that you also don't believe vaccines have anything to do with autism, so that is a bias you have against those doctos who do think vaccines caused autisn in many children. (Dr. Mark Geier, Dr Mercola, Dr. Sherri Tenpenny, and others) The fact that you would give any credence to that news piece that is one more effort to destroy Dr. Wakefield makes me have suspicions about you. By the way, another article says attorneys are now on the case because of the slanderous allegations in that article. I do think the truth will come out in favor of these fine doctors who are putting their life and fo Carlson Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 >---i think most parents, if their child was completely cured, would be calling all local tv stations, & be all over this board saying " i've got the answer " --no one is going to keep it a secret. <Well, I remember Santos posting on here last week about how her son was cured using the DAN protocol she followed with Volpe. She did call the news station. Are you missing something? Also, at the last DAN conference they had a section that featured recovered kids? Are you just being selective in what you're paying attention to? Have you looked at the ARI checklist? I suggest that you contact ARI and ask to see the parent feedback on various therapies. Your point illustrates what I was talking about earlier about the different sub-types of autism. Maybe things enzymes etc. aren't showing noticable differences because your child is having seizures or micro-seizures, or maybe your child is having extreme food allergies or maybe your child has the measles in his gut or spinal fluid or maybe your child has excessivly high levels of a variety of metals. >please--give us doubters some feedback about the progress being made on chelation, enzymes, epsom salts, etc...but please, if i hear one more time " he just seems to be more aware of his surroundings " i'm going to scream---let's have some concrete items. i'm really not cynical, well, maybe i am, >Well, from the your posts that I've read you seem to pretty cynical. It seems that either you shoot down everything that people present as progress--and people have presented lessening of sleeping problems, decrease of tantrums, stopping of diarrhea, toilet training, etc, or whatever is presented isn't enough. Most people don't have a full evaulation done every 6 months. Athough, I do remember someone posting speech evaulation differences, but it seems that even that wasn't enough for you. >It is frustrating when your child doesn't make as much progress as you hope. I've been really frustrated over the summer because we've been having issues with regression. I think it's partially related to his losing his front two teeth and growing in new ones. <we've been trying all of these things, & our son is progressing, but i cant say for sure it's anything more than maturation on his part & ABA. >that sounds like a problem with you're data collection. are you keeping track of specific things every day and seeing whether there is a change in the areas that you're looking for? Do you have specific things that you are trying to change? I started food enzymes because we were having diarrhea explosions 3 - 5 times a day. Then they went away, and my son had the first solid poop he had had in eight months. I then noticed that my son had fewer tantrums during the his aba sessions and was making faster progress on his programs. I have many, many, many more examples of various things that we've done. I try lots of things, but don't stick with anything that I don't see real progress with. >let's not forget about secretin, the miracle drug--even the manufacturer stopped the blind trials because statistically there <You may want to go and read about those trials a little more closely. It seems that the children weren't all administered all the pills--the kids would come in and a lot of time the nurses couldn't get the kids to take the pills due to tantruming, and just marked that they had taken them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 Secretin didn't improve my son's behavior, but overnight he went from spending two hours in the bathroom every single morning to spending fifteen minutes. He ASKED for another injection. Was it the 'cure' I'd hoped for? No. But it did bring about a huge improvement in the quality of life for everyone in the family (I didn't have to get up at 5 every bloody morning in order to start him in the bathroom so that he'd get to school on time, among other things), particularly my son. Jane On Nov 21, 2004, at 1:37 PM, Singleton wrote: >> let's not forget about > secretin, the miracle drug--even the manufacturer > stopped the blind trials because statistically there > <You may want to go and read about those trials > a little more closely. It seems that the children > weren't all administered all the pills--the kids would > come in and a lot of time the nurses couldn't get > the kids to take the pills due to tantruming, and > just marked that they had taken them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 Ok, gotta call BS here >If the DAN docs are siphoning off funds that might otherwise go to solid research by an organization like NAAR, there is harm. <I saw Dr. London in Dallas, and his whole goal in life is to find a drug for autism. Well, for the kids who are conceived in 5 years, there might be a drug for them, but for the children now, there are a lot of non-drug interventions that are working. The parents of children who've been reclassified as non-autistic probably wouldn't share your opinion. >And if someone's unvaccinated child carries measles or pertussis to a little boy or girl who is immunocompromised, there is harm. I pray to God there's no measles epidemic in London or Dublin or Belfast this winter. We forget that measles KILLS kids. <Please, " the sky is falling " doesn't work very well here. Look at the US death rates for measles and pertussis, and you will see that the rate had dropped 95% BEFORE the vaccines had been introduced. The reason? Public sewage and water treatment. That little low tech, non-drug intervention that a lot of people seem to forget about. Also, most of the occur among populations that HAVE been vaccinated, not among folks that haven't. Hmmmmmm, could it be that the vaccines are actually giving some children the disease? Hmmmmmm, could it be that some children's immune system are responding in unpredictable ways with all the loading up of extra shots. I suggest you check your " facts " about vaccines a little better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 Dear Listmates, I mostly lurk but felt compelled by our experiences to respond. I respect all of those who have experiences to share. I have been on this winding road for 8 years. My son is 8yrs. 3mths. Approximately 8yrs ago when my son was really young he presented with a strange blood disorder, our hell was just beginning, he wasn't diagnosed with autism until 5 1/2 years. At 18mths he began having seizures. They didn't begin serious, however as time progressed they became life-threatening, to make a very short story, we have been using Dr. Cave in Baton Rouge, a DAN doctor and my son has been seizure free for 119 days. We started with her Aug 16, 04. We have not begun our chelation protocol yet as I haven't completely had peace about DMSA. I do have peace about needing some chelation because my son has mercury, lead, arsenic, tin etc levels that require chelation. I attended the CASD conference and honestly never left to take a break, stayed for it all, I was most encouraged by the hope that progress is being made not only in our personal circumstance but also in others. Dr. Yasko seems to have much success with helping many difficult cases. Maybe I am not a great judge of people but I certainly felt there are more options for my child than I experienced 3 years ago and baby steps are okay with me. I have truly given all of the medical community a fair shake at helping us solve our " puzzle " as our Pedi said, knowing nothing about autism. Studies in mainstream brought me sleepless nights and lots of seizures even while on seizure meds. I have been told by the top guys at Texas Childrens, UTMB etc that there is nothing wrong, " but whatever you do, don't go to those quacks who put your children on all that stuff, cause then we'll have to fix him, we have a few here now that we are trying to fix " . In my opinion the quackery is mainstream medicene.(I don't like saying this, because it isn't nice, even if it is true!) I would love more than anecdotal evidence but the truth is that mainstream is no closer to accepting that autism and evidence based findings today are real than they were 8 years ago, if they were, I would know about it as I have trusted mainstream beyond question, it got me nothing more than shame over not wanting to vaccinating and the need for seizure meds, which by the way increased our regularity of seizures. I hope I do not sound bitter, because I am not, I am thankful for the last 119 days, for that matter, I am thankful for the last 8 years, I have had to reach so deep within myself to find hope that there would be a tomorrow to spend with my son, I feel blessed for the experience, however I am a lot older, I have aged 20 years in the last 8 years, that's okay, I was a young 33 year old when this all began. Sorry for the length, you can all be thrilled that I only lurk! I hope my experience speaks more to the facts than just he seems more aware, which by the way in my book is a good sign, I'll take whatever I can get on the positive side. I appreciate the frustration we all feel at times and hope that we can also share the joys. It is truly a joy to read all of your post, it has provided me with much food for thought and I look forward to sticking around but honestly, if my son was recovered I would want to sail off into that sunset very quietly, meaning that the only thing keeping me this engaged is my son's illnesses, this is a place that none of us choose to be in or stay in, especially when there are other options. I have one story to share, I was at an Autism meeting and told the group that I was just beginning the protocol with Cave, a couple said they had been on her protocol for a year with no results, I was devastated. After the meeting, the couple approached me and informed me that they couldn't really follow her protocol, it was too hard(I agree) and that was why they were not doing it. Before I make any judgments on protocols and how things have gone, ask all the questions, that night many, many, parents of autistic kids left our meeting only hearing that the protocol for DAN's doesn't work! I am religious about keeping my son on the protocol of supplements, enzymes. I do have room for improvment in the area of diet. I have exceeded the maximum # of characters, hope you all have a nice Thanksgiving! Dawn Tollefson -- In Autism Treatment , sebastian toledo <sebas_irv@y...> wrote: > just because there is no harm done, doesn't mean it > isn't quackery. the fact is, we really need > scientific studies done, instead of anecdotal evidence > on some of these treatments. we've done/do enzymes, > glut. creme (smells great!), kirkmans super-nuthera, > so many different names, i cant remember them...along > with aba & tomatis listening. our son is now over 5 > 1/2--2 years that we've been doing this. the only > solid evidence of anything that works beyond a shadow > of a doubt is aba---repetitive drills--because it is > quantifiable. our son has made lots of progress & is > even starting to sight read. he is verbal in > expressing his needs, but cant respond to questions, > if he hasnt been taught them (ie, what's your name, > how old, etc)..do i want a cure? you bet---do i think > the different dan protocols have helped? i'm > doubtful, to tell the truth, although we continue > somewhat on them, just in case. but has that progress > come from those treatments---maybe, but it could just > be natural maturation. a five year old does more than > a 3 yr old. > > i think there is more of a need for balance on this > site--anytime someone raises a red flag about > treatments, people come down on them, saying the > medical establishment is against these few DAN > doctors---but the proof is in the pudding. where are > all the " cured kids " ?--i've even heard on here, " well, > once their kids are cured, they are no longer on this > site, because they just want to move on with their > lives " ---what a piece of x*.)----i think most parents, > if their child was completely cured, would be calling > all local tv stations, & be all over this board saying > " i've got the answer " --no one is going to keep it a > secret. > > please--give us doubters some feedback about the > progress being made on chelation, enzymes, epsom > salts, etc...but please, if i hear one more time " he > just seems to be more aware of his surroundings " i'm > going to scream---let's have some concrete items. i'm > really not cynical, well, maybe i am, but we've been > trying all of these things, & our son is progressing, > but i cant say for sure it's anything more than > maturation on his part & ABA. let's not forget about > secretin, the miracle drug--even the manufacturer > stopped the blind trials because statistically there > was no difference-- & we were ready to try that as > well. let's have some more blind trials on these > other things. > > i would welcome your comments. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 Dawn, Have you considered TD-DMPS? At the chelatingkids2 group, I have read many posts from parents who are seeing a lot of nifty improvements. Enjoyed your post. Jane On Nov 21, 2004, at 11:00 PM, Dawn Tollefson wrote: > > > Dear Listmates, > I mostly lurk but felt compelled by our experiences to respond. I > respect all of those who have experiences to share. I have been on > this winding road for 8 years. My son is 8yrs. 3mths. > Approximately 8yrs ago when my son was really young he presented > with a strange blood disorder, our hell was just beginning, he > wasn't diagnosed with autism until 5 1/2 years. At 18mths he began > having seizures. They didn't begin serious, however as time > progressed they became life-threatening, to make a very short story, > we have been using Dr. Cave in Baton Rouge, a DAN doctor and my son > has been seizure free for 119 days. We started with her Aug 16, > 04. We have not begun our chelation protocol yet as I haven't > completely had peace about DMSA. I do have peace about needing some > chelation because my son has mercury, lead, arsenic, tin etc levels > that require chelation. I attended the CASD conference and honestly > never left to take a break, stayed for it all, I was most encouraged > by the hope that progress is being made not only in our personal > circumstance but also in others. Dr. Yasko seems to have much > success with helping many difficult cases. Maybe I am not a great > judge of people but I certainly felt there are more options for my > child than I experienced 3 years ago and baby steps are okay with > me. I have truly given all of the medical community a fair shake at > helping us solve our " puzzle " as our Pedi said, knowing nothing > about autism. Studies in mainstream brought me sleepless nights and > lots of seizures even while on seizure meds. I have been told by > the top guys at Texas Childrens, UTMB etc that there is nothing > wrong, " but whatever you do, don't go to those quacks who put your > children on all that stuff, cause then we'll have to fix him, we > have a few here now that we are trying to fix " . In my opinion the > quackery is mainstream medicene.(I don't like saying this, because > it isn't nice, even if it is true!) I would love more than > anecdotal evidence but the truth is that mainstream is no closer to > accepting that autism and evidence based findings today are real > than they were 8 years ago, if they were, I would know about it as I > have trusted mainstream beyond question, it got me nothing more than > shame over not wanting to vaccinating and the need for seizure meds, > which by the way increased our regularity of seizures. I hope I do > not sound bitter, because I am not, I am thankful for the last 119 > days, for that matter, I am thankful for the last 8 years, I have > had to reach so deep within myself to find hope that there would be > a tomorrow to spend with my son, I feel blessed for the experience, > however I am a lot older, I have aged 20 years in the last 8 years, > that's okay, I was a young 33 year old when this all began. Sorry > for the length, you can all be thrilled that I only lurk! I hope my > experience speaks more to the facts than just he seems more aware, > which by the way in my book is a good sign, I'll take whatever I can > get on the positive side. I appreciate the frustration we all feel > at times and hope that we can also share the joys. It is truly a > joy to read all of your post, it has provided me with much food for > thought and I look forward to sticking around but honestly, if my > son was recovered I would want to sail off into that sunset very > quietly, meaning that the only thing keeping me this engaged is my > son's illnesses, this is a place that none of us choose to be in or > stay in, especially when there are other options. I have one story > to share, I was at an Autism meeting and told the group that I was > just beginning the protocol with Cave, a couple said they > had been on her protocol for a year with no results, I was > devastated. After the meeting, the couple approached me and > informed me that they couldn't really follow her protocol, it was > too hard(I agree) and that was why they were not doing it. Before I > make any judgments on protocols and how things have gone, ask all > the questions, that night many, many, parents of autistic kids left > our meeting only hearing that the protocol for DAN's doesn't work! > I am religious about keeping my son on the protocol of supplements, > enzymes. I do have room for improvment in the area of diet. I have > exceeded the maximum # of characters, hope you all have a nice > Thanksgiving! > Dawn Tollefson > > -- In Autism Treatment , sebastian toledo > <sebas_irv@y...> wrote: >> just because there is no harm done, doesn't mean it >> isn't quackery. the fact is, we really need >> scientific studies done, instead of anecdotal evidence >> on some of these treatments. we've done/do enzymes, >> glut. creme (smells great!), kirkmans super-nuthera, >> so many different names, i cant remember them...along >> with aba & tomatis listening. our son is now over 5 >> 1/2--2 years that we've been doing this. the only >> solid evidence of anything that works beyond a shadow >> of a doubt is aba---repetitive drills--because it is >> quantifiable. our son has made lots of progress & is >> even starting to sight read. he is verbal in >> expressing his needs, but cant respond to questions, >> if he hasnt been taught them (ie, what's your name, >> how old, etc)..do i want a cure? you bet---do i think >> the different dan protocols have helped? i'm >> doubtful, to tell the truth, although we continue >> somewhat on them, just in case. but has that progress >> come from those treatments---maybe, but it could just >> be natural maturation. a five year old does more than >> a 3 yr old. >> >> i think there is more of a need for balance on this >> site--anytime someone raises a red flag about >> treatments, people come down on them, saying the >> medical establishment is against these few DAN >> doctors---but the proof is in the pudding. where are >> all the " cured kids " ?--i've even heard on here, " well, >> once their kids are cured, they are no longer on this >> site, because they just want to move on with their >> lives " ---what a piece of x*.)----i think most parents, >> if their child was completely cured, would be calling >> all local tv stations, & be all over this board saying >> " i've got the answer " --no one is going to keep it a >> secret. >> >> please--give us doubters some feedback about the >> progress being made on chelation, enzymes, epsom >> salts, etc...but please, if i hear one more time " he >> just seems to be more aware of his surroundings " i'm >> going to scream---let's have some concrete items. i'm >> really not cynical, well, maybe i am, but we've been >> trying all of these things, & our son is progressing, >> but i cant say for sure it's anything more than >> maturation on his part & ABA. let's not forget about >> secretin, the miracle drug--even the manufacturer >> stopped the blind trials because statistically there >> was no difference-- & we were ready to try that as >> well. let's have some more blind trials on these >> other things. >> >> i would welcome your comments. >> >> >> >> >> > > > > > > > Texas Autism Advocacy > > > Unlocking Autism > www.UnlockingAutism.org > > Autism-Awareness-Action > Worldwide internet group for parents who have a > child with AUTISM. > > SeekingJoyinDisability - Prayer support for those touched by > Disability: > SeekingJoyinDisability/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 Dawn, Have you considered TD-DMPS? At the chelatingkids2 group, I have read many posts from parents who are seeing a lot of nifty improvements. Enjoyed your post. Jane On Nov 21, 2004, at 11:00 PM, Dawn Tollefson wrote: > > > Dear Listmates, > I mostly lurk but felt compelled by our experiences to respond. I > respect all of those who have experiences to share. I have been on > this winding road for 8 years. My son is 8yrs. 3mths. > Approximately 8yrs ago when my son was really young he presented > with a strange blood disorder, our hell was just beginning, he > wasn't diagnosed with autism until 5 1/2 years. At 18mths he began > having seizures. They didn't begin serious, however as time > progressed they became life-threatening, to make a very short story, > we have been using Dr. Cave in Baton Rouge, a DAN doctor and my son > has been seizure free for 119 days. We started with her Aug 16, > 04. We have not begun our chelation protocol yet as I haven't > completely had peace about DMSA. I do have peace about needing some > chelation because my son has mercury, lead, arsenic, tin etc levels > that require chelation. I attended the CASD conference and honestly > never left to take a break, stayed for it all, I was most encouraged > by the hope that progress is being made not only in our personal > circumstance but also in others. Dr. Yasko seems to have much > success with helping many difficult cases. Maybe I am not a great > judge of people but I certainly felt there are more options for my > child than I experienced 3 years ago and baby steps are okay with > me. I have truly given all of the medical community a fair shake at > helping us solve our " puzzle " as our Pedi said, knowing nothing > about autism. Studies in mainstream brought me sleepless nights and > lots of seizures even while on seizure meds. I have been told by > the top guys at Texas Childrens, UTMB etc that there is nothing > wrong, " but whatever you do, don't go to those quacks who put your > children on all that stuff, cause then we'll have to fix him, we > have a few here now that we are trying to fix " . In my opinion the > quackery is mainstream medicene.(I don't like saying this, because > it isn't nice, even if it is true!) I would love more than > anecdotal evidence but the truth is that mainstream is no closer to > accepting that autism and evidence based findings today are real > than they were 8 years ago, if they were, I would know about it as I > have trusted mainstream beyond question, it got me nothing more than > shame over not wanting to vaccinating and the need for seizure meds, > which by the way increased our regularity of seizures. I hope I do > not sound bitter, because I am not, I am thankful for the last 119 > days, for that matter, I am thankful for the last 8 years, I have > had to reach so deep within myself to find hope that there would be > a tomorrow to spend with my son, I feel blessed for the experience, > however I am a lot older, I have aged 20 years in the last 8 years, > that's okay, I was a young 33 year old when this all began. Sorry > for the length, you can all be thrilled that I only lurk! I hope my > experience speaks more to the facts than just he seems more aware, > which by the way in my book is a good sign, I'll take whatever I can > get on the positive side. I appreciate the frustration we all feel > at times and hope that we can also share the joys. It is truly a > joy to read all of your post, it has provided me with much food for > thought and I look forward to sticking around but honestly, if my > son was recovered I would want to sail off into that sunset very > quietly, meaning that the only thing keeping me this engaged is my > son's illnesses, this is a place that none of us choose to be in or > stay in, especially when there are other options. I have one story > to share, I was at an Autism meeting and told the group that I was > just beginning the protocol with Cave, a couple said they > had been on her protocol for a year with no results, I was > devastated. After the meeting, the couple approached me and > informed me that they couldn't really follow her protocol, it was > too hard(I agree) and that was why they were not doing it. Before I > make any judgments on protocols and how things have gone, ask all > the questions, that night many, many, parents of autistic kids left > our meeting only hearing that the protocol for DAN's doesn't work! > I am religious about keeping my son on the protocol of supplements, > enzymes. I do have room for improvment in the area of diet. I have > exceeded the maximum # of characters, hope you all have a nice > Thanksgiving! > Dawn Tollefson > > -- In Autism Treatment , sebastian toledo > <sebas_irv@y...> wrote: >> just because there is no harm done, doesn't mean it >> isn't quackery. the fact is, we really need >> scientific studies done, instead of anecdotal evidence >> on some of these treatments. we've done/do enzymes, >> glut. creme (smells great!), kirkmans super-nuthera, >> so many different names, i cant remember them...along >> with aba & tomatis listening. our son is now over 5 >> 1/2--2 years that we've been doing this. the only >> solid evidence of anything that works beyond a shadow >> of a doubt is aba---repetitive drills--because it is >> quantifiable. our son has made lots of progress & is >> even starting to sight read. he is verbal in >> expressing his needs, but cant respond to questions, >> if he hasnt been taught them (ie, what's your name, >> how old, etc)..do i want a cure? you bet---do i think >> the different dan protocols have helped? i'm >> doubtful, to tell the truth, although we continue >> somewhat on them, just in case. but has that progress >> come from those treatments---maybe, but it could just >> be natural maturation. a five year old does more than >> a 3 yr old. >> >> i think there is more of a need for balance on this >> site--anytime someone raises a red flag about >> treatments, people come down on them, saying the >> medical establishment is against these few DAN >> doctors---but the proof is in the pudding. where are >> all the " cured kids " ?--i've even heard on here, " well, >> once their kids are cured, they are no longer on this >> site, because they just want to move on with their >> lives " ---what a piece of x*.)----i think most parents, >> if their child was completely cured, would be calling >> all local tv stations, & be all over this board saying >> " i've got the answer " --no one is going to keep it a >> secret. >> >> please--give us doubters some feedback about the >> progress being made on chelation, enzymes, epsom >> salts, etc...but please, if i hear one more time " he >> just seems to be more aware of his surroundings " i'm >> going to scream---let's have some concrete items. i'm >> really not cynical, well, maybe i am, but we've been >> trying all of these things, & our son is progressing, >> but i cant say for sure it's anything more than >> maturation on his part & ABA. let's not forget about >> secretin, the miracle drug--even the manufacturer >> stopped the blind trials because statistically there >> was no difference-- & we were ready to try that as >> well. let's have some more blind trials on these >> other things. >> >> i would welcome your comments. >> >> >> >> >> > > > > > > > Texas Autism Advocacy > > > Unlocking Autism > www.UnlockingAutism.org > > Autism-Awareness-Action > Worldwide internet group for parents who have a > child with AUTISM. > > SeekingJoyinDisability - Prayer support for those touched by > Disability: > SeekingJoyinDisability/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Yes Jane, I am a lurker on chelatingkids2 and am ready to do the TD-DMPS, just waiting on a few more test results, I think my son needs it yesterday, but he's waited this long so we will be patient. Doctors seem to be afraid to touch Noah, because he is doing well, before they were afraid to touch him because he was having difficult to control seizures. My husband and I seem like the only parties ready for this and we also know the metals cannot be good for him staying in or coming out. We have to watch him closely as it is, he is under constant surveilance, poor kid, he seems to like sleeping at the foot of our bed since the time his seizures increased. Thanks for the response. Dawn > >> just because there is no harm done, doesn't mean it > >> isn't quackery. the fact is, we really need > >> scientific studies done, instead of anecdotal evidence > >> on some of these treatments. we've done/do enzymes, > >> glut. creme (smells great!), kirkmans super-nuthera, > >> so many different names, i cant remember them...along > >> with aba & tomatis listening. our son is now over 5 > >> 1/2--2 years that we've been doing this. the only > >> solid evidence of anything that works beyond a shadow > >> of a doubt is aba---repetitive drills--because it is > >> quantifiable. our son has made lots of progress & is > >> even starting to sight read. he is verbal in > >> expressing his needs, but cant respond to questions, > >> if he hasnt been taught them (ie, what's your name, > >> how old, etc)..do i want a cure? you bet---do i think > >> the different dan protocols have helped? i'm > >> doubtful, to tell the truth, although we continue > >> somewhat on them, just in case. but has that progress > >> come from those treatments---maybe, but it could just > >> be natural maturation. a five year old does more than > >> a 3 yr old. > >> > >> i think there is more of a need for balance on this > >> site--anytime someone raises a red flag about > >> treatments, people come down on them, saying the > >> medical establishment is against these few DAN > >> doctors---but the proof is in the pudding. where are > >> all the " cured kids " ?--i've even heard on here, " well, > >> once their kids are cured, they are no longer on this > >> site, because they just want to move on with their > >> lives " ---what a piece of x*.)----i think most parents, > >> if their child was completely cured, would be calling > >> all local tv stations, & be all over this board saying > >> " i've got the answer " --no one is going to keep it a > >> secret. > >> > >> please--give us doubters some feedback about the > >> progress being made on chelation, enzymes, epsom > >> salts, etc...but please, if i hear one more time " he > >> just seems to be more aware of his surroundings " i'm > >> going to scream---let's have some concrete items. i'm > >> really not cynical, well, maybe i am, but we've been > >> trying all of these things, & our son is progressing, > >> but i cant say for sure it's anything more than > >> maturation on his part & ABA. let's not forget about > >> secretin, the miracle drug--even the manufacturer > >> stopped the blind trials because statistically there > >> was no difference-- & we were ready to try that as > >> well. let's have some more blind trials on these > >> other things. > >> > >> i would welcome your comments. > >> > >> > >> > >> > >> > > > > > > > > > > > > > > Texas Autism Advocacy > > > > > > Unlocking Autism > > www.UnlockingAutism.org > > > > Autism-Awareness-Action > > Worldwide internet group for parents who have a > > child with AUTISM. > > > > SeekingJoyinDisability - Prayer support for those touched by > > Disability: > > SeekingJoyinDisability/ > > > > > > Quote Link to comment Share on other sites More sharing options...
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