WARNING! FAKE AUTISM CURES!
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I just felt this was important enough for everyone to think about and be reminded of so when they are thinking about a new therapy or treatment for their child they will think clearly and not in haste. WEIGH ALL RISKS.... If it sounds too good to be true,... it generally is!http://autism.about.com/od/treatments/a/snakeoil.htmWARNING !!! Fake Autism "Cures" on the Marketfrom Floyd Tilton Parents BewareFor years, people with chronic, incurable illnesses have been easy prey for the con man and medical quack. These unscrupulous "snake oil" salesmen have made millions of dollars off of the pain and suffering of loved ones and patients. They know that where there's an absence of hope, there's money to be made, and like vultures, they circle their prey and then swoop down to devour them. Now these individuals are circling the autism community, looking for easy prey. They realize that many parents of children on the autism spectrum are so desperate that they will try anything in an attempt to help their child. On June 29, 2000, the "Las Vegas Sun" reported that a Nevada company was charged with selling adulterated, misbranded and new and unapproved drugs, improperly acting as pharmacists, and false advertising on their Internet website. As autism gets more publicity in the media, you can be assured that those who want to make a killing on "fake cures", will discover the desperation of some parents, and the number of cases such as this will increase. It's time for each of us affected by autism spectrum disorders to take precautions to make certain that we do not become victims in our search for a cure. There are several things that you can do to protect yourself and your child.
Of course, there are legitimate companies that sell pharmaceuticals over the Internet, but these will not be afraid to answer your questions and they will invite your investigation of them. They have nothing to hide. They can supply credentials, references, customer lists and other things to prove their legitimacy. The con man, however, will try to avoid giving specific information that can be checked by the customer, since they would be found out if they were investigated. A little time on your part will pay big dividends as you seek to help your child. Remember, there's no rush to make a decision. It won't make any difference if you wait a few days to start a treatment plan. The treatment that will work on Tuesday will work just as well if it begins on Friday. The extra time to investigate may be what you need to avoid being the victim of fraud and dashed hopes and worst of all, damaged health Texas functional Medacine is where it's done. Ftworth Texas. America is also behind on things other countries do. Some also don't believe in alternative choices. At one time that's all there was. Anything is a risk if you ask me. The reason I posted as I did on the other thread, though, was that I saw things going beyond legitimate scrutiny into spiteful attacks that seemed to assume that there were two sides (biomed and neuroleptics) and that one (neuroleptics) was on the side of acceptance and therefore could be sniped at. This does not mean that I agree with prescribing neuroleptics to autistic kids (I don't), it just means I'm not going to be caught up in a fight (between two factions of parents, neither of which I agree with) that makes no sense to me. I'd think the fact that I haven't taken the side of people prescribing neuroleptics for their kids would be obvious from my previous post in this thread, the one mentioning them explicitly as a mistake. (Although that's on a personal level. On a more widespread level, I still think that for the vast majority of people they do more harm than good, which is why I've contributed to the group Autistic People Against Neuroleptic Abuse. But don't mistake that for "taking your side," because I haven't.) Never would I have ever thought that you or anyone else would dream of taking sides with biomedical. This is a personal issue mostly with Liz who has the better than thou attitude and discredits every single option to help these kids EXCEPT the options that her friends have chosen to take. Yeah, don't get in the middle of this world war. It's obvious from GAMAC's blog that they are making these attacks as pure pleasure and to stir up trouble. It needs to stop and it won't b/c neither side will settle as long as what we're doing with our kids is being criticized but they seem to think there is nothing wrong with medications. Once the double standard is gone and she stops telling everyone that we may offend the one who has her son on Risperadol while she tries her best to offend our kids who are truly sick and need chelation, immune boosters, and whatever else then forget it. Let it go on forever. That's where the war is. With the double standard. And no Gtto this entire post isn't just for you to read. So you don't have to respond, it's not expected. Everyone knows where you stand it really that doesn't matter either b/c it's not about you and who you choose. I really don't care. I don't want anyone to choose anything. I just want their double standard to be acknowledged and it has. I'm out! [quote] However, I do have extensive training in autism, and work closely with the parents of the students I teach. [/quote] Nice to see a teacher on board that listens to parents. I know a good friend of mine had a teacher a couple of years ago who wouldn’t even show up for class and left everything for the para-professionals to do. I’m curious to know what your experience has been with clay baths or other fake cures? After all, this is what the topic is about. Not every “cure” and “treatment” out there is a good thing. I’ve even had people push me to have an exorcism performed on my child. How does a new parent sort out diets, probiotics, praying over colored water, energy vials, ABA, etc. Especially when all of these usually come with a hefty price tag? For parents just starting out, there are some things that should be avoided whereas others are just plain good common sense. [quote] Isn't it our job in the Autism community to offer support to each other and to build each other up, and not to bash what one is doing for their child?[/quote] I agree. I hope you go share your comments with the parents who are directing swipes and snipes at parents who choose to medicate. Those are really the only swipes I’ve seen (not counting the ones where the posters were banned and I couldn’t figure out who was directing what towards whom). Sashasmom should probably expect more than usual questioning as she has offered up herself and her son as public figures (based on their media experience). I’m not saying that is a bad thing, just that if she makes a claim publicly that something is helping her son to recover, then it should be expected that some people will question that claim publicly. I agree with the person who said that parent testimonials should be accurate and honest. Again, this isn’t a criticism of her, just a statement of fact about public figures. Heffalump is correct when she states that the title of this thread is “Warning! Fake Autism Cures”. If a parent comes here and asks if clay baths are a fake autism cure, then she is entitled to receive information about it. I am always skeptical about “cures” that are promoted as such. The box I received came with a piece of paper that stated that some children step out of the tub after their first bath and begin to talk. As a professional who has worked with children affected by autism, what do you think about that statement? I am leery of any product that makes extravagant claims (though the small print will say that they aren’t making any promises), is expensive and is targeted towards a vulnerable audience. Clay baths do fit in that category. I saw on another website once a thread that discussed how to tell if something is “too good to be true” and how to spot a scam. I can’t remember where though. It probably would be a good thing to have posted here. [quote] Heffalump: I do not feel that special education teachers should be making recommendations regarding experimental/unproven biomedical treatments, one way or the other. Just my opinion. [/quote] C Robin (if you're even a real person and not just another alias) I take plenty of criticism from many people and it is done in a very respectful manner. Once these pit bulls started their crap and attacking me I turn into one just like them. I'm not backing down b/c some old lady with a law degree thinks she knows my child and discredits his gains from biomedical and claims "if he was really autistic in the first place". Umm, yeah he has 3 diagnosis on paper from 3 different organizations/psychologist. I can take criticism and do all the time but this little pack is the only one who takes it to extremes. Therefore being my age I will act my age just as they are acting school girl age. By all means Liz/Winnie/Heffalump has all the right in the world to question a treatment however she does not have the right to make a statement about a treatment that she has no clue about. I have very little experience with clay baths and my post states that. It also states that I do not plan to see gains from it and that we're just trying to help pull more metals out any way that we can. I'm not wanting to do chelation as much as it is recommended so i'm helping the process with natural chelators. But for her to say [quote]Yes -- unfortunately many there are many peddlers of quacky, expensive treatments on the internet. There may be quacky stuff on the internet but many wuacky things that she says is a scam is helping these children become more functional. For her to say "Yes" to is clay baths a scam is not her place to do so. It's not mine either. It's the parents place who does the treatments and decides for themselves. If a child doesn't have "gains" from a clay bath it doesn't mean it's not helping the child. If metals are coming out then the purpose of the bath is being done. Same with chelation. Although we saw gains with chelation we would still continue if we didn't see anymore. We will continue until the toxic levels of metals are out. If a parent is leaving a child toxic who can not excreet on their own then IMO they are harming their child and I would think less on a parent who knows their child is toxic and doesn't do anything about it. [QUOTE=sashasmom]I'm not backing down b/c some old lady with a law degree thinks she knows my child and discredits his gains from biomedical and claims "if he was really autistic in the first place". [/quote]I'm not sure to whom you are referring, but I am not an old lady with a law degree, and I did not state what you quoted above. Name-calling is not an effective method to make a point or discuss facts regarding a treatment -- neither are boasts you have made elsewhere on this forum that your child "functions better than any kids I have seen who has an ASD diagnosis" while promoting treatments. I think when you make such statements you should probably expect questions. Back to the topic of the thread: [QUOTE=sashasmom]It says that they are on MEDICATION chelators in addition to the clay baths. You can cleary see that from their statements.[/QUOTE] Yes, so it would therefore be impossible to evaluate the chelating effect of the clay bath. I also might mention that there is a difference in the type of test administered for acute lead poisoning and those typically sent to a few select labs after administration of a chelator. The labs promoted heavily on sites for autism typically use "provoked" samples (samples taken after administration of a chelator) and compare these to unprovoked norms (samples where no chelator was administered). This raises many questions of validity regarding these "provoked" tests. Parents who are interested in the chelation of lead might be interested in the following study in Pediatrics: Effect of Chelation Therapy on the Neuropsychological and Behavioral Development of Lead-Exposed Children After School Entry http://pediatrics.aappublications.org/cgi/content/full/114/1 /19 Many articles regarding lead poisoning can be searched on sites such as PubMed.
This is why we have things like science, to sort out which is which, since something can look useful, but really just be coincidence. So there's more than just personal experience that should be discussed. Oscar, [QUOTE=Oscar]And acutally, yes, it is a small world after all, huh??[/QUOTE]
Yes, it is. The internet certainly makes it smaller. Apparently you began making claims regarding your “expertise” before you realized that the forum included a parent with recent first-hand experience in your classroom.
Interestingly, this issue actually appears to be on topic with this very thread and raises an important issue. Parents should be wary of overstated claims made by products and treatments, and the same can be said for the professionals working with our children. In fact, the latter may have a greater potential for damage, considering that the “professional” is responsible for the child’s
You have claimed repeatedly on this forum to have “extensive training” and “experience” in autism,
[QUOTE=Oscar]In response to questiong my training, I was trained in
Your statement above is entirely contradictory to your statements made in another internet location two weeks ago, on 7/29/06:
[QUOTE=Oscar] I can also tell you that most special ed teachers at this time are not adequate when teaching children with Autism. I graduated from Auburn Univerity with my degree in 1999. At that time, I never even heard the word Autism. it wasn't until my fourth year teaching that i had that experience. Alot of veteran teachers have no training in Autism and aren't gonna get it through the school system. Autism is not something you can write an IEP for or even come close to being able to teach in the way of things like ABA and using pic syms, etc if you have not had the training.Although I am a special ed teacher, I act as family advocate for children outside my syste[/QUOTE]
Anyone can do the math. It seems that your “extensive training” and "experience" were also not apparent in the setting where you worked a year ago.
I would be interested in knowing what undergrad or graduate special education program in this state "extensively trains" students in ABA. This would involve multiple practicums on campus, if it even existed, and you claim to have been teaching over the past year. BTW, formal PECS training is done by Pyramid Educational Consultants, by persons certified in the use of PECS. When I last checked, there were no PECS-certified instructors in Alabama. Being "extensively trained" and experienced in either PECS or ABA is a lengthy process. And application to law school is also more involved than having a professor offer to help you as well, but then, you would know that if you had actually applied as you indicated elsewhere on this forum. Just FYI.
I will refrain from posting the link to your post above as you also potentially compromise the legal position of a child in this internet location, which is viewable to anyone on the WWW. You, or the parent of the child in question, however, are welcome to post the link in the event that it substantiates your statements in some way. Unfortunately such internet behavior would not be condoned by an actual advocate, although you claim to be one on this forum:
[QUOTE=Oscar]I am an advocate for families and children in my state, and you can get alot of answers by finding yourself someone who will advocate and inform you of what is right and wrong. When it comes to a point of my families needing a lawyer, I also suggest it.[/QUOTE]
Parents concerned about implementation of an IEP, the safety of their child in the classroom, and teacher attendance certainly do need an advocate – an actual advocate. If a parent finds it necessary to seek training in instructional areas on their own, due to the lack of expertise on the teacher’s part, or send their own therapist to a classroom to
You now have the opportunity for a “fresh start.” Rather that continuing to talk the talk, I hope that you will walk the walk for the sake of the children you now teach.
I am all about accurate information for parents. Exposing the truth regarding claims of products or professionals to parents IS an act of advocacy, and typically takes less time than weaving the yarn that provokes the exposure.
[quote] I am so sorry to know that all you have to do with your day is google my name to find out information. I assure you that I have posted nothing on any other board without his mother's permission. HOWEVER, I DID NOT KNOW THAT SHE WAS A MEMBER OF THIS BOARD. [/quote] Actually, I have found it helpful to google people that catch my attention. It helps me understand their background and see what their “agenda” is. One of your first posts was to blast other members of this board in defense of sashasmom, so I do find it a bit hard to believe you didn’t know she posted here. The googling of your information took less than five minutes, so don’t worry about the length of time it took to google. You are on this site professing to be an advocate of children with autism and in a professional career as a special ed teacher. I am going to try to explain this in a way that makes sense to both you and sashasmom (and I am not trying to offend either of you with what I’m going to say). An advocate would never, ever post confidential information about a family who is in the middle of a legal battle. You did. If sashasmom chooses to post this type of information, that is certainly her business and right to do so. As both an advocate and friend, you should let her know this is a bad idea. However, the information that concerns me was not posted by sashasmom, it was posted by you. Regardless of what she would or would not approve of, it is your responsibility as an advocate not to post such. You didn’t even edit out names or other pertinent information. I find it difficult to believe that you have had any sort of training in advocacy as these are almost common sense type of things. Post or not, it makes no difference to me. I do know that school systems frown heavily on teachers posting under their real names and engaging in message board battles. I’ve seen many cases where teachers post to ask questions or advice and I’ve also seen them offer advice on things they have knowledge in. That’s obviously not an issue. I have no interest in “retaliating” against you or your posting. I do hope you read this and remove your posts from that other message board. I am sending the post that concerns me to sashasmom via private message. [QUOTE=ddavis]Well, the "truth police" aren't very trustworthy themselves. [/QUOTE] PARENTS ARE SEEING RESULTS WITH CHEALATION THERAPY! JUST CAUSE IT'S NOT CONVENTIONAL DOESN'T MEAN IT WON'T WORK. [QUOTE=gtto]Oscar, I'm not a parent either, but I am an autistic person. If my parents were on this board and I were younger, I would appreciate them getting warnings. If they'd been warned in advance about many of the "treatments" they ended up trying with me, they might not have wasted so much money, and in some cases damaged my body or mind so much. I'm all for scrutiny of any and all autism "treatments" regardless of whose feelings are hurt by the scrutiny -- because autistic people are the ones who get physically hurt, or worse, if the scrutiny doesn't exist.[/QUOTE] Hi, gtto. I agree that warnings about potential misinformation are very valuable and important for parents to hear and consider. Likewise, there is plenty of genuinely helpful information available on boards such as this one (both in terms of support AND biomedical options). Unfortunately, there is often a fine line between what is real and imagined, and because all children are different with different issues, it is even more challenging than it might appear on the surface. For instance, in my heart of hearts, I am an "acceptance" kind of girl. Those who know me best will attest to this. I believe every human being deserves to be treated with respect (unless they prove otherwise) and should be valued as a whole being, regardless of their age, race, color, religion or mental/physical abilities or lack thereof. I am a lover of diversity and often find myself cheering for the underdog. When I first started reading your posts and your website I was deeply touched. (I have also since been astonished to see how much you are able to type on various boards with such speed and accuracy, while also maintaining your own website and updating it regularly. Very impressive.) I found myself questioning the path I have chosen (at least partially) for my son, and at one point considered giving up on all biomed (not that we're doing much to begin with by some standards) and giving in to "acceptance." However, right around that time my son's lab results came back revealing an overgrowth of yeast. I struggled with whether or not to move forward with treatment (oral antifungals in particular). It was not a decision I took lightly; in fact, I lost sleep over it. Ultimately, I decided to give in to it JUST ONCE. At the same time I changed my son's diet (yet again) because I was not/am not willing to play around with rx antifungal meds as a standard part of life. Besides that, given my limited intelligence, I felt more comfortable sticking with something less invasive that I could control. It is certainly less convenient for me, but it is a choice I am comfortable with for now. At any rate, since then, my son has "taken off" in terms of communication and socialization. It could be a coincidence, or it could be (probably is) a combination of other things "clicking" for him (other supplements including mB12). And I must admit that I am overjoyed by this, and very, very grateful. He is nowhere near "cured" and I am not even looking for a cure or recovery at this point anyway. But there is no doubt in my mind that the path we have chosen for him, which includes conservative biomedical interventions, has helped him to be able to relate to and understand the world around him. I hope that is not what you consider to be lack of acceptance. If it is, then I am guilty and probably always will be. So my advice to parents is to listen to the warnings about quackery - really. And also listen to the voices of those who live autism day in and day out and truly try to hear them. And at the end of the day, listen to your own heart and make the decision that you can live with.
Also known as LittleManzParents/LittleManzMama If you had an overgrowth of yeast in your own body, such as a yeast infection, wouldn't you do some treatment to get rid of it? You had PROOF that your son had an overgrowth of yeast. I don't think any parent should be ridculed or be judged as not accepting their child and the Autism when they are taking precations to rid the body harmful things that are they. Especially when there is PROOF. My advice is to not listen so much to what people "think" about this or that. But to do your own research and get your own understanding of the whole concept so that you can deciefer through all the people's comments who are just totally against it OR swear by it. What works for one is not going to work for the next. AND, there are certainly quacks of kinds out there. If you do your own research and have your own understanding, you are less likely to fall prey to them. This is a great example. This parent almost gave up on something that was just about to help her son make some gains because of one person's views that are all over the internet. Then she got PROOF and made her own decesion. Aren't you glad you did that now? I hear the only thing after this a new neuron growth treatment. Autism free. I met someone who had son chelated and is now doing what I said. He is now healing. Therapies in 10 yrs. did nothing for this boy.I am confused ... I understand the first post, but the other 2 - Are these scams or are they real. Cos if there is sarcasm I dont readily get it what with the lack of emoticon's ... and we need a good one for sarcasm anyway. Cool. Srinath. I find it interesting that the person calling themselves Heffalump, if you look at their profile, will not give their name, or where they are from or anything about themselves. In addition, they have posted 58 times all about the clay. If you want my opinion, this is a person who has an agenda. Whatever it is, I don't like it. I used the clay not only for my Daughter, but on my Husband. He had trouble concentrating, so I had him tested. He had mercury, teflon, aluminum and assorted other things. We figured it was because he was a contractor. Anyway, it has helped both of them. As for you heffalump. I don't know who you are, but your hidden agenda didn't work on me. Nice try though!Hidden agenda eh?... and do you intend sharing your insights into other pdd subjects or will this remain your one and only post? [QUOTE=Brent]MY ISSUE IS TOXINS ARE EVERYWHERE YOU CAN'T RID THEM FOR LIFE. [/QUOTE] Yeah, but we can do our best to detox our kids and repair/ improve our kids methylation systems so they can detox themselves naturally. fake software warning too bump [QUOTE=Brent]PARENTS ARE SEEING RESULTS WITH CHEALATION THERAPY! JUST CAUSE IT'S NOT CONVENTIONAL DOESN'T MEAN IT WON'T WORK. [/QUOTE]Agreed. The testing is fairly simple. Why all doctors don't do it as a matter of course when diagnosing with Autism is beyond me. Test for mercury and selenium. Kids with merc will show EXTREMELY low levels, like .000001%. This means they are retaining mercury. Their selenium levels will also be VERY low, if non-existent. Selenium is what produces Glutathione in the body, which naturally chelates mercury. No surprise there is a deficiency of selenium in just about every child who received thimerosal and has autism. Yes folks, it IS that cut and dry. My theory is that a child's place on the spectrum can be directly correlated to their deficiency in selenium. That will not prove to be true for many years. Wanna know why? I'm surprised nobody really thinks about this, but I do. The statute of limitations to sue a pharm company over a drug or vaccine is 3 years. In 2003, they removed thimerosal from child vaccines, for no immediate reason. Plans are in the works to remove it from all vaccines over the next few years. I'm really not guessing, because I'm pretty damn sure in my mind, but 3+ years after that everything will come out in the wash. Until then, don't expect to see anything from the CDC but "everything is fine, all is well, go get another shot". File suit now if you're within 3 years. Those of you that are old enough probably remember these words, those that aren't, ask your parents........... "Cigarette smoking DOES NOT cause cancer" If thats not a lesson to question everything you read and hear, I don't know what is. I hear many times this a hoax to ask parent's to try this. I don't know who to trust anymore at all. Regular dr. says bull to all this! The non conventinal say do it. I am not doing until i feel it is safe. Messing with neurons sounds pretty scary to me.  He his takeing stuff to grow new neurons his our damaged. They boy I mentioned. is the clay for autism a scam also??????????Yes -- unfortunately many there are many peddlers of quacky, expensive treatments on the internet. Umm no most of the treatments you call scams Winnie are therapies that thousands of families have done successfully and their children are doing much better than they ever were before. You just can't settle with the fact that some kids are metal toxic and happened to be diagnosed with autism, and chelating has lessened the severness of the ASD symptoms. Lena, you have a lot of research to do on your own. Don't take my one opinion or Winnie (Heffalumps) one opinion and make a decision on anything. There are many people who have used clay baths to chelate their children who are heavy metal toxic and also have autism. If your child is not heavy metal toxic then it probably won't help your child any b/c it would defeat the purpose. I would recommend joining the yahoo group chelatingkids2 to learn more about chelation (natural and medications) the side effects, the good, the bad, the all around. 10,000 members on that forum who chelate their children with autism and have had many gains can't be wrong. Lena, I whole-heartedly agree that a parent should do their own research in order to make informed treatment decisions. Unfortunately, there is no research on the effectiveness of "autism clay," and a parent would need to rely entirely on the "testimonials" feature of such sales sites. Testimonials on alt-med sales sites are not reliable sources of information. As MsSteelersFan stated in the original post: If it sounds too good to be true,... it generally is! This characterizes many of the preparations sold as alternative "treatments" or "cures," and is good advice. These products do not fall under the regulation of the FDA for safety or effectiveness, which is why peddlers of these products include the following disclaimer (in a not-so-obvious location) such as the one on this site: [quote] IMPORTANT NOTE: WORK WITH YOUR HEALTH CARE PRACTITIONER The information on this web site is for informational and educational purposes only. Please consult a health care professional regarding the applicability of any opinion or recommendations with respect to your symptoms or medical condition. No statement on the www.clayforautism.com web site should be construed as a claim for cure, treatment or prevention of any disease. These statements have not been evaluated by the FDA. [/QUOTE] It would be a good idea to ask a trusted healthcare provider about products such as this one. Assuming that a person had actual metal poisoning, I very much doubt that this can be corrected with a $50 bag of bentonite. I doubt it would do much harm either-- though you may be $50 poorer and have a mess in your bathtub. Hi Lena :) I have two boxes of the miracle clay baths and used about half a box on my daughter (without much luck). I do think that there are better ways to spend ones money, but that's my personal opinion. I remember two things about the clay baths that seemed a bit 'off'. One- they promoted a child starting to talk immediately after taking a bath. That may have actually happened, but seemed a bit miraculous. Two - The box I received suggested that you wear all sorts of protective gear to keep from receiving chemical burns, etc. Even though the parent is supposed to wear protective gear, the child is placed directly in. Made me a bit squeamish, but I did do it (and got in the tub with her). I hope you have a better response from it than we did. Lena,Many treatments are ancedotal. Look at how many ASD kids benefit from the GF/CF diet. That's not anything my trusted healthcare provider recommended however, he did recommend a drug that's not even FDA approved for kids...Risperdal. Just goes to show you Drs. don't know everything.....you have to listen to other parents you trust and do your own investigating to find out what works for your child. If no gains were made other than getting the metals out of his body then that is enough for me. My son doesn't have to turn backflips from a chelating bath to show it helps. We plan to continue them and test the metals in the water when the bath is finished. Most parents use the clay baths to chelate as a "mild chelator" b/c they are going low and slow. There are test that have been done on clay baths showing the toxic levels of metals coming out. It's somewhere on their site I believe. I do not not expect to see many gains from these baths. Like I said our sole purpose is to pull the metals. Even if it's just a small amount. I have given him his bath after his DMPS and the tub fills with balck specs when he is finished. Crystal, Black specks of metals, visible to the naked eye, floating about in your child's body, traveling toward clay plastered on the skin's surface, would probably be a situation incompatible with life. Do you really think that specks of that size are "sucked" through the skin? Or that metals can be removed via clay at all? The only way that one could determine that clay pulls metals is to have the clay tested before and after application to the child. And parents do not have any way of doing so, obviously. This is based on pseudoscience -- best to save the $50 unless one has money to burn. There are probably better-researched ways to spend one's treatment dollar.
[quote]Lena, Actually, our gastroenterologist suggested a gf/cf diet for our daughter. Currently our DAN! is working hand in hand with our pediatrician and gastro. Nobody has suggested medication for her, though I do not think poorly of parents who go this route. Perhaps you should look at a "trusted healthcare provider" that you actually "trust". I know that we elected to find a different gastro after he didn't appear to be concerned with our situation. Not all doctors are evil. lol In regards to the clay, Heffalump is correct. When we tried this there was no way to measure the metals in the tub. Furthermore, the powders that are mixed together can cause the appearance of black specks. We scooped a jar of the bathwater out prior to putting our daughter in and still saw black clumps develop without the presence of anything else. Perhaps they have improved the product, but if you are new to autism, the money would probably be better spent on either a book on Behavioral Interventions or (if you are interested in biomed) probiotics and a good multivitamin. Good luck regardless. Never said black clumps of metals come out through the skin or even travel around in the body that way. Why are you assuming that is what I believe. There you go assuming and putting words in my mouth again. Just said that the bath had clumps in it afterward that was supposed to be "metals" that form that way after the bath b/c of the clay. There is a way to test it before and after. Send it to a lab and get the metal content. We put my youngest son in a bath of his own and did not see black specs. Only left him in for 15 minutes before he was ready to get out. The only thing that happened was he smelled bad afterward. Just a couple of comments I pulled from another board about clay baths: [quote] --Before we started TD DMSA we started using NDF every day and Clay [quote]Hi,
Around 10 families used it all with good results and improvement.You might need to use olive oil as a moisturizer other than that no side effect.Sleep gets better immediately with lead clay bath,aluminum and mercury might disturb sleep and better be taken before afternoon.[/quote] [quote]Hi - My DAN doctor swears by Clay Baths, although I think she's in the
minority. She feels strongly that they remove metals very effectively, and has shown me should urine tests results on some of her kids that seems to verify that. My daughter refuses to take them, all of a sudden, so we stopped doing clay baths, but I was using "L.L.'s" baths, which are avilable on EBay. They have several different types - the one our DAN recommended were the "Clear-Out": and "Tox-Away". Here's the website for L.L., and like I said, most of them are sold by L.L. through EBay as well, less expensively: http://www.magneticclay.com/index.php [/quote]
[quote] --My son has been on clay baths for about 10 months now. After the
first two months he started pulling large amounts of lead. WWe added TD DMSA the end of February and his lead levels are slowly coming down. I am hoping on our next urine challenge test we will start to see mercury. [/quote]
[quote]Hello
Is it normal to get black specs in the clay bath? Clay went in lightish brown and after the bath was full of tiny black specs. I'd like to think it was toxins - or might it just be the clay reacting with my bath tub? Anyway, he seemed very calm and happy afterward. So whatever, we'll try them again! Thanks [/quote]
[quote]Dear *
> I have been using clay baths for 12 months now with my 5 1/2yr old son * and I am a firm beliver in them. We also purchased the urin kit tests from www.evenbetternow.com as well as the clay baths. The urin tests are pretty acurate we have vigurously tested them. We have just done a mercury detox clay bath tonight and his urin test showed up as mild levels of mercury coming up in minutes which is good as it says on the detox sheet that it will only come up as high or moderate if there has been a DMPS done > In December I did a mercury detox clay bath and the urin tests come up as moderate levels of mercury and I was thrilled as this could only be achieved by a DMPS acording to the test strip. > Any how I can't help with the sensory thing but I do recomend the clay baths but make sure you purchase the urin test kits that way you know if the clay baths are working or not." "We have been using clay baths for some time now Ill tell you our story I honestly don't have an opinion one way or the other right now b/c it is still new to me. But one who has never done it has no experience with it and only knows what she reads. Usually people anti-chelation only seek out reading the things that discredit the treatment. I just wanted to see what it was all about as it is harmless in my opinion and being that we are using a medication chelator I see it doing nothing but helping the process along in our case. [QUOTE=sashasmom] There is a way to test it before and after. Send it to a lab and get the metal content. [/QUOTE] Isn't it odd that in all the lengthy testimonials in your post and on the site, that no one has done so? Would seem to be a fairly simple verification on the manufacturer's part. Guess they don't care about testing before and after. It's something that I personally want to do so I am looking into the best way to do just that. These parents who posted their comments about clay baths on the other board state that they tested the urine metals after the baths and most were using medication chelators as well and that the tests showed toxic levels of metals (mostly reported lead) coming out. Of this ONE comment of each of these parents I'm sure that somewhere on the 100,000 post I could have gone through each and every one to find out if the child was not pulling metals prior to adding the baths. It's not important to me so if you want then look it up yourself.[QUOTE=sashasmom] These parents who posted their comments about clay baths on the other board state that they tested the urine metals after the baths and most were using medication chelators as well and that the tests showed toxic levels of metals (mostly reported lead) coming out. [/QUOTE] I hope that if these children have actual lead poisoning that their parents will seek medical help rather than treating it with clay found on an internet site. Any pediatrician can test for lead poisoning. Further, it is important in cases of lead poisoning that the source of lead be identified and eliminated. I don't have children of my own, so I cannot even imagine having to dig through the wealth of info and research in order to make informed decesions to help my child. However, I do have extensive training in autism, and work closely with the parents of the students I teach. It has been reported to me by these parents that when things such as lead are detected, medical prof. are being informed. Porper steps do get taken to find out the source of things like lead. As a sp ed teacher, it is my job to educate parents about all the ways to gather info and to educate about all the therapies and interventions, so that the parent can then make an informed decesion about what they feel is best for their child. I find it dis-heartening that some parents choose to be so negative about some therapies and interventions, instead of trying to help fellow parents. I see parents here offering places for research and offering their own experiences with using clay baths, but I don't see those parents saying "I did it, it works, you should surely do it too". However, I do see some parents insisting that trying a therapy or intervention such as a clay bath would be harmful to the child. Isn't it our job in the Autism community to offer support to each other and to build each other up, and not to bash what one is doing for their child? I see some threads here where parents are offering places to get info, period. And although those parents are saying they are doing it, they are not telling other parents to certainly do it themselves. So why must those we are against something such as clay baths be so angry towards the ones who are trying it? If i were a parent of a child with autism and I was to come here looking for info on caly baths, this is what I would see: Parents and others offering sites and places to get info. Parents offering their experiences of using the clay baths. And other parents appearing to "attack" those parents decesions to use the baths. Why must the purpose be to knock down instead of build up? What is the harm in parents offering their own experiences, and stating thier observations? I think that for those parents who are obviously against therapies and interventions such as clay baths and chelation, your stance would be better presented in such a way that it doesn't appear to "attack" what another parent has chosen to do. Oscar, The title of this thread is "Warning! Fake Autism Cures" -- so I feel that my comments have been on topic with the thread. A parent asked a question regarding clay, and I answered it. The post following mine was somewhat combative, however. I was critical of clay, not parents. Part of advocating for children with autism and the parents of newly-diagnosed children is protecting them from the numerous unproven, ineffective, and sometimes, even unsafe treatments marketed for autism. Unfortunately, there are many unscrupulous salespeople and practitioners claiming exaggerated treatment benefits who are willing to take advantage of the hope and desperation of others -- and this is true for almost any condition. Again, this is the topic of this thread. In order for parents to make informed decisions regarding treatments, they must look beyond the sales pitch and "testimonies" on internet sales sites. Most parents do not have unlimited resources, financial or in terms of time, and have to make careful decisions regarding where to best invest these resources. Treatment of autism can be a lucrative business, and it is not a free buffet. Further, this aspect of intervention/treatment has been an interest of mine even before I was a parent to a child with autism. There may be many biomedical treatments that are helpful to some children in treating aspects of their health -- but for some, as the original poster stated...If it sounds too good to be true, it probably is. [QUOTE=Oscar] However, I do have extensive training in autism, and work closely with the parents of the students I teach. [/QUOTE] I noticed that you have mentioned your extensive training several times. Didn't you work at Creekview a year ago? Small world!!! When/where did you receive your extensive training in ABA and PECS that you mentioned in the education forum? [QUOTE=Oscar]As a sp ed teacher, it is my job to educate parents about all the ways to gather info and to educate about all the therapies and interventions, so that the parent can then make an informed decesion about what they feel is best for their child.[/QUOTE] I do not feel that special education teachers should be making recommendations regarding experimental/unproven biomedical treatments, one way or the other. Just my opinion. Oscar, I'm not a parent either, but I am an autistic person. If my parents were on this board and I were younger, I would appreciate them getting warnings. If they'd been warned in advance about many of the "treatments" they ended up trying with me, they might not have wasted so much money, and in some cases damaged my body or mind so much. I'm all for scrutiny of any and all autism "treatments" regardless of whose feelings are hurt by the scrutiny -- because autistic people are the ones who get physically hurt, or worse, if the scrutiny doesn't exist. If my parents had been warned of the real side-effects of oral antifungals, for instance, they would not have been able to be convinced that my uncontrollable vomiting in response to these drugs was a "good sign" and that I "had to get worse before I got better" and needed to stay on them because clearly all the vomiting meant I really did have a (non-existent, by the way) systemic fungal infection. They wouldn't have fought me so hard when I refused to take any more of it because I didn't want to spend all day throwing up. If they had been warned about... good grief I don't even know if I've heard many parents talk about this one online, but if they'd been warned about people who say "Your child has a snake that is jumping up her spine and rattling around in her brain, and that means she's spiritually gifted, but she's in danger, and if she doesn't join a very specific cult I know of, she's going to die," then, yeah, lots of time and money wasted among other things. (Fortunately I did not join the cult.) If they'd known to trust their instincts rather than giving in to the doctors when they saw the immediate and drastic change in my movements on neuroleptics, maybe they would have pushed for me not to be given any instead of settling for something they knew was a little off, and the motor skills effects they saw turned out permanent. If they knew that losing about 40 pounds in a couple of weeks was dangerous rather than a good sign I was adjusting to the drastic diet proposed by one doctor... yet again, a lot of malnourishment would have been saved. And that's just a small sample of the "treatments" I underwent. And this is not to mention the whole mentality this can force the person under "treatment" into. How are parents going to be informed about things if they are presumed to know everything they need to know to make the choices to begin with? If they are like my parents were when I was younger, they're struggling largely in the dark about these things, and operating a lot on "I heard this was really good for someone." How is it good for today's autistic children if their parents are also kept largely in the dark, and expected only to support each other's choices no matter what those choices are? How is anyone going to become informed if every choice no matter how out-there is considered too far above criticism, lest that criticism be perceived as a personal attack on someone's parenting skills? Why is it considered a personal attack on someone's parenting skills to validly criticize a method that that person didn't even invent (not that if they invented it it would be a personal attack, but still)? And why is it so wrong to bring up the fact that nobody knows everything and there's always more information that a person didn't know that could really hurt them or someone they love? In the end I look at not what makes people feel attacked, but what information is going to harm or help autistic people. Lack of information on our parents' part causes direct harm to us, and that includes lack of information on the ineffectiveness or even harmfulness of certain things marketed as autism treatments today. If our parents don't know what's wrong with something, then they won't know why not to do it. Not everything a parent tries is harmless just because it's considered an autism treatment (or considered "natural" -- stinging nettles are natural too and you don't see me sitting in a patch of them), and sometimes even if it's physically harmless it's not psychologically harmless. If people don't know, they can't do anything about it. And this kind of knowledge is far more important than whether people feel supported or un-supported by the fact that the knowledge is being passed around. I WOULD ALSO SAY WE CAN'T BELIEVE POLITICIANS EITHER. [QUOTE=Heffalump] [QUOTE=sashasmom] These parents who posted their comments about clay baths on the other board state that they tested the urine metals after the baths and most were using medication chelators as well and that the tests showed toxic levels of metals (mostly reported lead) coming out. [/QUOTE] I hope that if these children have actual lead poisoning that their parents will seek medical help rather than treating it with clay found on an internet site. Any pediatrician can test for lead poisoning. Further, it is important in cases of lead poisoning that the source of lead be identified and eliminated. [/QUOTE] Re read the post Liz. It says that they are on MEDICATION chelators in addition to the clay baths. You can cleary see that from their statements. Our pediatrician (new one not the old one) has seen the results of Sasha's led test and wanted to send an inspector to see where the source was coming from. There was no source from our home and that is where he spends most of his time besides his therapies. She didn't know what treatment to start with for the lead. Good thing we didn't have to rely on the pediatrician to take charge of things. [quote]How is it good for today's autistic children if their parents are also kept largely in the dark, and expected only to support each other's choices no matter what those choices are? How is anyone going to become informed if every choice no matter how out-there is considered too far above criticism, lest that criticism be perceived as a personal attack on someone's parenting skills? Why is it considered a personal attack on someone's parenting skills to validly criticize a method that that person didn't even invent (not that if they invented it it would be a personal attack, but still)? And why is it so wrong to bring up the fact that nobody knows everything and there's always more information that a person didn't know that could really hurt them or someone they love?[/quote] Gtto, This goes both ways. Just as chelation may hurt some children (usually the ones who don't actually need it) so can medications that parents give their children to contain the behaviors. Most of the attacks are provoked from the Alabama moms who attack and criticize biomed parents with everything we do. Just like they're sick of us we're sick of them. Liz, why don't you go give some more support groups crappy law advice about why ASA can't do certain things with silly excuses. Yes, I am glad it worked out well for my son. I only wish I knew for sure that it would do the same for others, but unfortuntely there are too many variables and very few guarantees.
I think that if Sharlets blood work said she had toxic levels of any metals in her blood autistic or not I would at least weigh up risk versus gain for treatment of that problem.And it did cross my mind that if a child has CLEAR tests that PROVE these metals are there and after some form of chelation there is CLEAR PROOF that those metals have reduced then that would be some success, even if current symptoms didn't improve. Because how would you know that reducing the metal levels wouldn't help to stop tose symptoms from getting worse over time? I have no experience in this so obviously this is just an opinion based on what I have read here and other places, and I could possibly change my opinion with more experience if that makes sense. |
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interesting...