Jeff Bradstreet deserts the sinking ship

12 Feb

Cast you mind back, dear Reader, to July last year when the RhoGAM ruling failed to find general or specific causation for thiomersal causing autism. That little episode has taken a heavy toll on the ‘expert witness’ status of both Mark Geier and Boyd Haley, both of whom were eviscerated by the presiding judge.

But, hey, at least they had the guts to stick around. Some people decide to do a runner at the first sign of trouble.

Enter Jeff Bradstreet, advocate of <a href="exorcism (yes, really) for treating autism.

In September of 2006, Bradstreet was the designated ‘expert witness’ in a case of Aventis Pasteur, Inc. v. Skevofilax, the latter being a family that filed suit on the claim that:

…their minor son’s autism was caused by toxic levels of mercury contained in thimerosal, a preservative used in the vaccines.

This trial ended abruptly when:

After three amended scheduling orders and nearly eleven months of discovery, Respondents’ sole expert on specific causation withdrew from further participation in the case without ever having rendered his expert opinion.

There’s a lot of legal stuff going on in the background of this case regarding whether it was right to hold the Skevofilax’s responsible for the failure of the case. The first trial said it was, they appealed and the appeal judge supported this appeal and now this summary judgement has reversed the appeal.

However, what I’m really interested in is _why_ the ‘expert witness’ failed to materialise.

James Jeffrey Bradstreet, M.D., was designated to testify to specific causation, i.e., “that significant amounts of mercury to which the minor plaintiff was exposed, including bolus doses received as a result of vaccination, was a substantial factor in causing [Michael’s] current injuries and symptoms,” and further, “that the exposure to toxic levels of mercury within the vaccines [was] a substantial contributing factor to the minor Plaintiff’s ultimate injuries and symptoms.”

But what happened? Why did Bradstreet never testify?

On 26 October 2004, Respondents notified Petitioners, by letter, that “due to unforeseen circumstances [genomic profiling] test results critical to [Dr.] Bradstreet’s opinions” would be delayed up to sixty days. The relevant genomic susceptibility tests assertedly needed for Dr. Bradstreet’s expert medical opinion were being performed by a laboratory at the University of Arkansas. An affidavit completed by Dr. Bradstreet stated that an outbreak of leukemia in New Mexico caused the Arkansas lab ‘s director, Dr. Jill James, to be called out of town to consult on that outbreak, and that she would not be returning for several weeks. Drs. James and Bradstreet previously had collaborated on other projects. According to Dr. Bradstreet, he would be unable to formulate an expert medical opinion regarding causation specific to Michael’s injuries until the results of the genetic test results were received fro m Dr. James’ lab

Who else is rolling their eyes right now? Apparently, these ‘tests’ can only be performed by Jill James lab. And only by Jill James herself (I assume the other employees are useless?). There’s further no evidence to assume that these tests provide evedence of anything anyway and apparently the dog once ate his homework.

So, respondents and plaintiffs argued over a new schedule and a new schedule had to be enforced by the court in the end and Jeff Bradstreet was once again instructed to be made available for deposition, this time on 19 Nov 2005. Subjects at that deposition concerning Bradstreets role as an expert witness would include:

[a]ppropriate topics of inquiry for this deposition, [were to] include, but not be limited to, the nature and purpose of the GST [glutathione-S-transferase, a particular family of enzymes in the human genome] M1 [a particular gene which encodes the GST enzyme] polymorphism [i.e., difference or variation] test, the work that Dr. Brad street [had] performed to date in this action, his qualifications, his affidavit submitted in connection with Plaintiff ‘s Motion for Continuance, all of his opinions on the subject of general causation, and the results of those tests that Dr. Bradstreet [had] performed or directed to be performed and that [were] available as of the date of [the] initial discovery deposition.

In other words, a thorough examination of the man, his qualifications and the quality of his science.

But, the court decided if the results of his tests of unknown origin or efficacy that could only be performed by Jill James at Jill James lab ‘became available’ (snigger) then:

Dr. Bradstreet would be made available for additional discovery by no later than 14 January 2005 in order to explain how those results pertained to his expert opinion regarding specific causation.

And then (gasp!) the court received the following:

Counsel for Respondents informed the Circuit Court and opposing counsel, by letter dated 23 November 2004, that Dr. Bradstreet declined to participate further in the litigation. According to Respondents’ counsel, Dr. Bradstreet withdrew due to outside “professional and personal commitments and time constraints.

According to Bradstreet:

…the primary reason for his withdrawal was the impact the time commitment would have on his ability to spend time with his family.

So either he had no family before the start of proceedings or he forgot he had a family and then remembered or…oh hell, I don’t know…but strangely, Bradstreet was not to busy to speak at The Autism One conference in May 2005, or May 2006, or to attend and speak at a conference of the American Dietetic Assoc in October 2005.

I guess ‘too busy’ depends pretty much on how much money each gig pays and how often difficult questions are asked.

The end result for the Skevofilax’s?

Despite three amended scheduling orders, and approximately 11 months allotted to conduct discovery, Respondents failed to produce an expert who could testify to specific causation within a reason able degree of scientific certainty. Without such an expert, Respondents’ claims must fail as a matter of law.

Bradstreet hung them out to dry and they couldn’t find anyone else prepared to take on causation.

Thanks to A for the file :o) .

104 Responses to “Jeff Bradstreet deserts the sinking ship”

  1. Seth L March 1, 2007 at 03:15 #

    Friend in California, I have read the blogs, and i have been to your site Kev. I don’t know how to give you my e-mail confidentially so that Steve and I can correspond–perhaps one of you can tell me how to do that. Kev, I respect your feelings about your daughter–my son shares some of the same characteristics–every parent should be able to parent their child and treat their child in the manner they feel is best, free from the criticism of others. I guess that is my point. Sharing information can do no harm in my opinion; when I first came here I guess I was just shocked at the way some of these bloggers express themselves. Has anyone listened to the presentation that I referred to?

  2. Seth L March 1, 2007 at 03:35 #

    Anonimouse, I’m still waiting for you to refer me to the “reputable medical professional that knows something about autism”. Did you take the time to listen to the “piece of garbage” talk that I referred to earlier? How about Lovaas? My son’s ABA consultant was a PHD who studied under Lovaas and is actually friends with him and his wife. Does he qualify as a “prick” too? By the way, perhaps kids who want to learn something about this disorder won’t use the terms you do to describe people with whom they disagree.

  3. Friend in California March 1, 2007 at 03:47 #

    Seth –
    I have not yet listened to the link you are referring me to, but I definitely will.
    To email Kev, click “contact” at the top of any page on this site.
    I’m glad you took the time to review some of these blog entries.
    I’ll talk to you soon.

  4. Friend in California March 2, 2007 at 04:51 #

    Seth –
    Allright, I just need your contact info. I listened to the link you provided.

  5. Kathy N March 7, 2007 at 06:40 #

    Seth and Friend in CA,
    I would love to hear a synopsis of your discussion. Oh, but I should warn you that I need you to use very small, simple words in your synopsis, because I’m just a poor duped parent who after only nine months at roughly 3 hours per day of research decided to begin slowly and gently chelating her son with transdermal (skin cream) DMSA under the supervision of one of those oh-so-dumb DAN! doctors. Lucky me, though. My son just happened to make such rapid advances within two months after starting the DMSA that we were able to discontinue his outrageously expensive ABA in-home program. All of a sudden the ABA program manager just couldn’t keep up with his progress. Hmmm…must have been a coincidence. Sure had the ABA therapists shaking their heads, though. I’d never heard the word “Wow” used so many times in such a short period of time in my life. Couldn’t have had anything to do with the urine test results that showed spikes in nickel, platinum (don’t know where that came from), and—you guessed it—mercury.
    I just read my above comment to my husband, and he said, “I’m sure it’s to no avail.” I realize that he’s probably right. Those who are anti-biomed (not just “Well, I haven’t tried it or haven’t tried it thoroughly, so I’m withholding judgment,” but who seem to have a deep-seated hatred for anyone who suggests that children on the spectrum might improve through biological treatments–dietary changes, vitamin and mineral supplements, immune system support, and–lions, and tigers, and bears, oh my, the biggie–chelation) seem to be moving more and more toward closed-mindedness when it comes to anything biomed. Believe me, I can relate. In the past year I’ve done a 180 degree turn-around. I remember speaking with my neighbor up the street whose daughter was diagnosed with autism in 1999. My husband and I scoffed when she told me that she thought the MMR was what did it to her daughter (her wording, not mine). Do I realize the MMR doesn’t contain mercury (and never has, to the best of my knowledge)? Yes. Do I believe that there is a connection between vaccines and autism? Yes. Do I believe vaccines are the only environmental factor that plays into the puzzle? No. Do I have a hope that one day children will be tested immediately after birth for immune system conditions that would contraindicate certain vaccinations? Yes to the Nth degree. Is research being done that is shedding some light on the impact of environmental factors on ASDs? Yes (see below). Do I believe that in 15 to 20 years those who are discounting biomed treatments will eat their words? Sadly for their children, yes. I say this last “yes” with heartfelt anguish at the fact that most pediatricians still take a wait-and-see attitude when assessing children, discounting the fact that even the more “mainstream” methods (ABA, speech, OT, etc.) are more effective the earlier they’re begun). Not only do those practitioners not tell parents about biomed treatments, they discount those treatments if the parents bring them up. The wave is starting to flow in the other direction, though, folks, much as you are trying to swim upstream. My son’s mainstream pediatrician, whom we still visit despite knowing that vaccines were the tipping point for our son (my amalgam fillings being drilled during pregnancy were the start–vaccines were the finish) recently said to me (for the third time), “Whatever you’re doing, keep doing it.” A new comment she made, though, was “You know, I really need to look into some of the new treatments. Would you mind if I referred parents of kids who are newly diagnosed to you?” You can guess my answer.

    In terms of whether there is a cure for autism, my thinking is along the lines of what Drs. Levitt, Campbell, Sutcliffe,and Ebert at Vanderbilt University have recently discovered. Their research (published in Oct 2006) documents that there is a genetic vulnerability or susceptibility to autism that only when coupled with an environmental disturbance(s), leads to an expression of autism spectrum disorder (http://www.autismconnect.org/news.asp?section=00010001&itemtype=news&id=5933). Without that environmental disturbance, there is no autism, PDD-NOS, ADD/ADHD, etc.

    Okay–the floor is now open for outrage. How dare I do something so heinous to my child as to chelate him? How dare I believe the quacks who would promote such treatments? How dare I try to change my child who is wonderful just as he is? Well, to answer all of those questions–because I love him more than life. I would die for my child. (Not to get too sappy, but my eyes just welled with tears as I wrote the last sentence.) He is amazing, sweet, funny, silly, smart, kind, caring, snuggleable, kissable, and I cherish him beyond words. What’s even better…he’s getting healthy. He’s losing the diarrhea he’s had his entire life. No longer does he spend hours stacking CD-ROMs or lining up shoes. He’s not fixating on Dora the Explorer or smearing poop on the walls. He’s too busy roughhousing with his brother or sister, or dancing to music, or singing B-I-N-G-O, or playing at the park, or going out to eat with us, or drawing on his chalkboard, or doing puzzles, or, well, you get the picture. It’s not that he’s completed healed–YET–but he’s certainly on the way. We expect that by the end of this year we will be largely, if not completely, done with the treatments that are allowing my son’s body to start functioning properly on its own. Right now his methylation and sulfation pathways are still not working properly (at last check, his sulfate level was in the toilet, his zinc was really low, he was intolerant to a plethora of foods, and his immune system was on overdrive–but all of those tests were done pre-chelation, and I suspect that they are not all the case anymore).

    My hope is that people will quit taking such divisive stances on the subject of biomedical treatments. There’s a middle ground of respect for another’s opinion that’s being lost. Do I believe that there are doctors out there bilking innocent people out of money in hopes of a cure for their child? Yes. Do I believe that there are doctors out there whose biomed approaches actually do cure children? Yes. We are a case in point. It’s happening for our child as we speak..errr..write. Do I believe biomed treatments would be beneficial for all kids? No. Do I believe they would be beneficial for most, especially if begun early enough? Yes. Do I respect the fact that some parents disagree with that statement? Yes. Do I still weep for their children who might be helped? Yes.

    Kathy in Florida

  6. Kev March 7, 2007 at 06:53 #

    Kathy, there’s so many strawmen arguments in there I literally don’t know where to start. I may have to devote a whole post to it when I’ve got more time.

  7. Friend in California March 7, 2007 at 07:12 #

    Maybe I can help just a little, Kev.

    Kathy: My son is showing the same behavioral changes yours is, with no “biomedical” treatments. Weep all you want, but not for my son.

    I am happy to hear your child is doing well. Why don’t we chalk it up to his wonderful potential as a growing human who is continually learning and changing, hmmm?

  8. Friend in California March 7, 2007 at 07:25 #

    “My hope is that people will quit taking such divisive stances on the subject of biomedical treatments.”
    -Kathy

    “Do I believe that in 15 to 20 years those who are discounting biomed treatments will eat their words? Sadly for their children, yes.”
    -Kathy

    Kathy strikes a blow for lack of divisiveness everywhere!

  9. MsClark March 7, 2007 at 07:30 #

    Kathy, you’ve been duped. Sorry. I weep for the money you’ve wasted on a “chelator” that doesn’t chelate and misleading lab tests. I weep for how you’ve been sold a bill of goods. Do I think you have the right to put stinky lotion on your child? Yes. Do I think they’d be better off if some parents didn’t think of their children as walking toxic waste? Yes. Do I feel bad for kids who are told (directly or indirectly) that they are damaged goods? Yes.

  10. Kathy N March 7, 2007 at 08:52 #

    Kev, Friend, and MsClark–
    I knew I wouldn’t change your opinion based on my perceptions (and those of my husband, father, brother, daughter, aunt, my son’s pediatrician, preschool teacher, speech therapist, ABA therapists and program manager, etc.), but did you read the article on the research by the folks at Vandy? What is your opinion of that research?

    Friend–
    I agree. My wording was too harsh (eating my words now, eh?). 🙂 I retract the words “eat their words” from my post and replace them with “regret their words.” I don’t know if that makes it all that much less divisive to you, but it’s still my opinion, and, as you are with yours, I’m entitled to it. Oh, and I’m not disagreeing with the fact that some children do better through time without biomed treatments (then again, some children never gain the ability to communicate verbally, and some never stop smearing their poop, etc., but that is aside from this point). The daughter of my neighbor up the street is now in 8th grade and doing well. (She received intensive traditional therapy and entered an inclusive preschool program beginning at two years old.) The main residual issues she has now are auditory processing delay, difficulty with abstract concepts, and perhaps a bit more obsessive computer use than the average kid. Her mom told me that she is worried about her entering high school where higher-level classes depend more on abstract thinking. This is the type of thing that I believe chelation will prevent for my child. Thankfully he’s now on the very mild end of the spectrum and quickly moving off it. His ATEC score started at 78 and is now at 26. He never completely lost all of his words (just most of them), and he’s a really smart little guy–turned three in December and he knows his alphabet by sight, is very musical, is a whiz with puzzles (great visual-spatial ability), etc. He still can’t carry on a conversation at the level of most of his peers, but he’s getting there. In addition to my 3-year-old, I have a 17-year-old daughter and a 15-month-old son. I also babysat tons when I was growing up. I’ve seen development spurts (my daughter and youngest son have had lots of them), but when I talk about the changes that have been wrought in my son through biomedical treatments, they go far beyond any sort of everyday developmental growth. They go from my son always being confused about which color was which to all-of-a-sudden never mixing them up (GFCF diet), from him appearing to be somewhat dyslexic with a numbers puzzle (he always reversed the number 3 and mixed up the 6 and 9) to never being confused about it (also the diet), from him rarely speaking more than one word at a time (when he said anything) to speaking in short phrases (methylated vitamin B-12), from him mixing up pronouns to him all-of-a-sudden using them correctly (chelation), and from him not at all getting the gist of back-and-forth conversation to him attempting to initiate conversations with his younger brother and preschool friends–and yes, I did say FRIENDS (also chelation).

    MsClark–
    What research can you quote that convinces you that DMSA (dimercaptosuccinic acid–(HO2CCH(SH)CH(SH)CO2H) is not a chelator? I did research on the two main chelators that have been used for years on end (DMSA and DMPS) and felt that DMSA was safer and most appropriate for my child. As to you suggesting that you think I view my child as “walking toxic waste,” well then I suppose I think that I, myself, am one as well, for once we have neared the end of the process for my son, I plan to do testing on myself and if it confirms that I am mercury toxic, I plan to chelate myself. (And by your comment, I guess that you believe that people whose children are lead-poisoned therefore believe their children are walking toxic waste as well?) If only you could see the reality of our household. Though I certainly lose my temper with my child at times (if you have a child on the spectrum you will understand), I daresay my child has been hugged more often; kissed more often; told he is loved more often; told he is smart, cute, sweet, wonderful, fun, and any other positive term you can think of more often than most kids on the planet). In short, he is loved and he knows it. And what’s best of all…I know that he loves me too because he tells me so (and shows me with affection as well of course).

    So do your best to try and tear down my commentary. My son is getting the treatment he needs. It’s working. We’re thrilled. And others are being helped because I’m spreading the word, not only in my community, but even here, in “hostile” territory.

    I wish the best for you and yours,

    Kathy

    P.S. I’d still love to see a run-down on the conversation between Friend and Seth if one occurred.

  11. Kev March 7, 2007 at 09:43 #

    I would love to hear a synopsis of your discussion. Oh, but I should warn you that I need you to use very small, simple words in your synopsis, because I’m just a poor duped parent who after only nine months at roughly 3 hours per day of research decided to begin slowly and gently chelating her son with transdermal (skin cream) DMSA under the supervision of one of those oh-so-dumb DAN! doctors. Lucky me, though. My son just happened to make such rapid advances within two months after starting the DMSA that we were able to discontinue his outrageously expensive ABA in-home program.

    So your son made these huge leaps forward whilst he was undergoing ABA? I see.

    ABA claims a ‘succss’ rate of about 60%, whereas my best efforts reveal if we total all the ‘success’ stories from a range of different vaccine/autism sites we get a success rate of 5.1%. There is also mentions of ‘spontaneous success’ that run at around 3%. Here’s an interesting quote from ex-DAN! head Bernie Rimland:

    Mysterious spontaneous recovery. It hasn’t happened often, but *it has happened often enough for the phenomenon to be worth noting*: over the past 25 years I have received a handful of letters from parents which read something like this: “Please remove our address from your files. Our child has continued to improve so greatly—we don’t know why—that now he is no longer considered autistic.

    Does the combined might of a 5% success rate qualify as one of Bernie’s handfuls?

    (Ref for all of above quotes and stats).

    I just read my above comment to my husband, and he said, “I’m sure it’s to no avail.” I realize that he’s probably right. Those who are anti-biomed (not just “Well, I haven’t tried it or haven’t tried it thoroughly, so I’m withholding judgment,” but who seem to have a deep-seated hatred for anyone who suggests that children on the spectrum might improve through biological treatments—dietary changes, vitamin and mineral supplements, immune system support, and—lions, and tigers, and bears, oh my, the biggie—chelation) seem to be moving more and more toward closed-mindedness when it comes to anything biomed.

    I suggest you go talk to those people as that’s not me.

    A new comment she made, though, was “You know, I really need to look into some of the new treatments. Would you mind if I referred parents of kids who are newly diagnosed to you?” You can guess my answer.

    I’m hoping its something along the lines of: I’m sorry I’m not a doctor and to recommend treatmetns would be tantamount of practicing medicince without a license.

    In terms of whether there is a cure for autism, my thinking is along the lines of what Drs. Levitt, Campbell, Sutcliffe,and Ebert at Vanderbilt University have recently discovered. Their research (published in Oct 2006) documents that there is a genetic vulnerability or susceptibility to autism that only when coupled with an environmental disturbance(s), leads to an expression of autism spectrum disorder (http://www.autismconnect.org/news.asp?section=00010001&itemtype=news&id=5933). Without that environmental disturbance, there is no autism, PDD-NOS, ADD/ADHD, etc.

    Then they’re idiots. Possibly they (and you) are unaware of something called Rett Syndrome? Please explain to me what the environmental aspect of Rett is.

    That aside, no one here is going to argue with you that autism is purely genetic. Thats because we don’t think it is (Rett aside).

    Okay—the floor is now open for outrage. How dare I do something so heinous to my child as to chelate him? How dare I believe the quacks who would promote such treatments? How dare I try to change my child who is wonderful just as he is? Well, to answer all of those questions—because I love him more than life. I would die for my child.

    Oh please. Your implication that those of us who don’t chelate somehow do nothing for our children (and don’t love them to boot) is tired and damned rude. I don’t have any outrage for you but I am curious…don’t you feel your child is wonderful just as he is? Here’s a child you would die for, but not accept? That’s weird Kathy. What I think you mean is that you would die to make him not autistic. And who’s that really for Kathy? Him? Or you?

    What’s even better…he’s getting healthy. He’s losing the diarrhea he’s had his entire life. No longer does he spend hours stacking CD-ROMs or lining up shoes. He’s not fixating on Dora the Explorer or smearing poop on the walls.

    Uh-huh. Aside form the diarrhea which my daughters never had, all the same things can be said of her. You seem to feel that biomed parents have exclusivity on educational and personal progression. You don’t.

    Yes. Do I believe that there are doctors out there whose biomed approaches actually do cure children? Yes. We are a case in point. It’s happening for our child as we speak..errr..write. Do I believe biomed treatments would be beneficial for all kids? No. Do I believe they would be beneficial for most, especially if begun early enough? Yes. Do I respect the fact that some parents disagree with that statement? Yes. Do I still weep for their children who might be helped? Yes.

    Riiight. So you believe all these things (but you hedge your bets by carrying on with the ABA) but you’re not above a bit of pious weeping for other peoples kids? How good of you.

    I weep for Tariq Nadama who was killed by Roy Kerry. Roy Kerry, who is still listed on DAN!’s website and was actually added _after_ it was known he killed this young boy.

    I weep for the kids who might go an see DAN! doctors like Alan Schwartz who is a paedophile and a DAN! doc like Lorene Amet who’s closely associated with a convicted paedophile or DAN! doctors who are Scientologists.

    Did you get one of the ‘good’ DAN! Docs? Or did you get one of these ones? How would you know? Are their histories on the ARI site for peopel to make informed choices? Do you think parents should know about these thigns Kathy? Or should we just trust you? Whatever you’re doing, keep doing it. Right? Like DAN! Miriam Jang, who reported:

    I would like to start with some very serious news: we do have to be careful of Vitamin A toxicity with our sweet kids. There is a child with reported Vitamin A toxicity that was so severe that the child had to be hospitalized for 12 days.

    What have you achieved that the rest of us haven’t? Aside from spreading unfounded fears of vaccines?

    Sorry to be so blunt Kathy but your misplaced piety grates on me.

  12. MsClark March 7, 2007 at 10:09 #

    Kathy,

    DMSA is a chelator, it’s just that it doesn’t chelate in cream form because the DMSA doesn’t pass through the skin. If you have other than your word or the word of a quack that says it does (spare me the schlock lab urine analysis I want real research that says how much DMSA goes through the skin and how often it should be dosed, etc, based on empirical data, not voodoo con artist talk)

    All the parents raving about all the gains their kids made on TD TMPS and DMSA are just wonderful proof that it’s all a big ugly con game on the part of the promoters of the stuff. No one says that suckers can’t be happy customers.

  13. Kathy N March 7, 2007 at 16:14 #

    Hi again. I’ll make this as short and sweet as possible so I can go play with my sons.

    Kev–
    You said, “So your son made these huge leaps forward whilst he was undergoing ABA? I see.”

    I should have expounded more on this. Yes, he made some gains through ABA. But the reason we stopped the program is that he had almost no sessions of any type of therapy (neither ABA nor speech) during the holidays (for more than a month), which was very soon after starting chelation. We saw HUGE gains during this time frame when therapy was halted (more than we had seen in months and months of ABA). The only thing we did differently during that time was chelate. When the therapists came back after the holiday, they kept saying, “Wow! Wow!” because of the new and exciting things my son kept doing that they had never seen before. It was that dramatic a difference. Far more gains than a month of natural progression, per se, could ever hope to provide.

    You said: my best efforts reveal if we total all the ‘success’ stories from a range of different vaccine/autism sites we get a success rate of 5.1%. There is also mentions of ‘spontaneous success’ that run at around 3%.

    This probably surprised me more than any other replies I’ve gotten on your site. Kev, I truly don’t mean offense, but I read the blog entry you noted and your review was highly unscientific and far, far from inclusive. Would that I had the time and money to do research that would reveal the true numbers (accounting for those other than the handful that have posted to the sites mentioned).

    You said: I’m hoping its something along the lines of: I’m sorry I’m not a doctor and to recommend treatmetns would be tantamount of practicing medicince without a license.

    No, the gist of the conversation from my son’s doc was more like, “I, like most pediatricians, do not specialize in ASDs and really don’t have much that I can share to help these parents.” Not her words, of course, but that was the general idea. My response is that I would never deign to give parents a treatment protocol, but I will certainly deign to give them the information that I found through research and that they’re not, unfortunately, routinely being given in a doc’s office–yet–such as the fact that the GFCF diet works wonders for many kids, the fact that there are doctors (good ones and bad ones, just like in all professions and walks of life) who specialize in biomed treatments, and so forth. Unlike the people you criticize (and some rightly so, of course, but others unfairly), I have nothing to gain financially and am only interested in helping others hopefully find the success that we’ve found (and continue to find).

    You said: Then they’re idiots. Possibly they (and you) are unaware of something called Rett Syndrome? Please explain to me what the environmental aspect of Rett is.

    Sorry, haven’t done research into that. Am excited, though, about the new research that just came out indicating that reversal of Rett symptoms may be possible in the fairly near future. Will find the reference for that if you want it. Oh, and how in the world do they qualify as idiots? Because their research results differ from your opinion?

    You said: That aside, no one here is going to argue with you that autism is purely genetic. Thats because we don’t think it is (Rett aside).

    What ARE your thoughts on causation then, if not purely genetics?

    You said: Your implication that those of us who don’t chelate somehow do nothing for our children (and don’t love them to boot) is tired and damned rude.

    I never said that, nor intentionally implied it (nor do I believe that to be the case). My comments were merely in response to the implication (outright statements, actually) on this blog that if you DO chelate or provide certain biomed care for your child that you somehow don’t love them.

    Point in fact…

    You said: don’t you feel your child is wonderful just as he is? Here’s a child you would die for, but not accept? That’s weird Kathy. What I think you mean is that you would die to make him not autistic. And who’s that really for Kathy? Him? Or you?

    Now that’s damn rude. Now if you ask me whether I’m glad that my 15 month old doesn’t seem to be exhibiting the autistic behaviors that my 3 year old did at that age, or whether I’m glad that my 17 year old is not autistic, my answer to both would be “yes.” Does that make me a bad parent or indicate that I don’t love my 3 year old? I don’t think so, but if you decide you’re somehow worthy to judge otherwise, so be it. As I said, if you took a glimpse into our household, I believe you would judge otherwise.

    You said:
    You seem to feel that biomed parents have exclusivity on educational and personal progression. You don’t.

    I believe my comments about my neighbor’s daughter refute that statement.

    You said: Riiight. So you believe all these things (but you hedge your bets by carrying on with the ABA).

    Hedge our bets with ABA? I’d prefer the term, “Research and do everything we believe will help our child.” Before your shackles get raised, I’m not saying you aren’t doing what you believe will help your child. I’m just saying that I believe there might be other things that would help your child that you haven’t pursued (or pursued fully). Again, please re-read my comments on my neighbor’s daughter. And as to the ABA…as I mentioned, we discontinued it when we realized chelation works far better than ABA.

    You said: I weep for Tariq Nadama who was killed by Roy Kerry.

    Is this the same boy who was killed by a pharmacy error when given a sound-alike drug? I’m not being sarcastic. I’m seriously asking if that’s to whom you’re referring. Don’t have time at the moment to check. But I think that’s the one.

    You said: Did you get one of the ‘good’ DAN! Docs? Or did you get one of these ones? How would you know? Are their histories on the ARI site for peopel to make informed choices

    I guess we got lucky…after I did quite a bit of research on the doc in question before visiting her. I think the ARI has a disclaimer that they don’t yet have info on the quality of physicians listed. I don’t attest for anyone else’s experiences except mine, but I’ve gone out and done the research each step of the way with my child. Some parents aren’t as well educated as I. Others don’t have the resources that I do (not that I’m wealthy). As I mentioned earlier, it’s incredibly sad that there are docs out there abusing and/or harming children. Have I heard about the cases you mention? No. Would I tell others who might ever ask me about them to watch out based on your comments? Of course. Should I somehow be blamed or considered connected to them just because I seek biomed treatments for my kid…gimme a break.

    MsClark–

    You said: DMSA is a chelator, it’s just that it doesn’t chelate in cream form because the DMSA doesn’t pass through the skin. If you have other than your word or the word of a quack that says it does (spare me the schlock lab urine analysis

    I absolutely beg to differ on the fact that it chelates in cream form (though perhaps the compounding pharmacy that produces it makes a difference–ours is Lee Silsby and they provide an additional cream to assist with absorption). I completely questioned it myself before we began, but my thought process was, “Well, at worst it will do nothing” and we’ll waste a couple of months of time and money. I had heard that as the metals are redistributed within the body, some kids again demonstrate the worst of their behaviors that they might not have shown for a while. We experienced this with our son on the second day of the first round of chelation. He smeared poop…which he hadn’t done in 7 or 8 months. Tell me TD doesn’t do anything. Okay, so now perhaps you’re saying, “See? It’s bad for him because you saw a bad result.” That one instance of poop smearing and somewhat more hyperness and less solid poop while on round are the only negatives we’ve seen. Everything else has been amazing. On his first round, he said things we’d never heard him say and he began stringing words together in sentences as never before.

    I am a skeptic by nature (hence the length of time and research before we started chelation), and I do believe it doesn’t work for some, or does very little. For my child it’s done wonders. I did hear that at the last DAN! conference one speaker talked about research that showed the efficacy for delivery methods and transdermal was weakest. Next strongest was oral. Next strongest was suppository, closely followed by IV. In fact, I’m considering “moving up” to oral chelation in the near future once we’ve hit a standstill with TD if the labs agree that it’s still needed. That’s probably the only other method I will use, and I do agree that each person’s absorption rate is different, therefore it would be very difficult to document how much each child absorbs. Again, I can’t vouch for every person out there who does biomed. But here’s my beautiful son, now sitting on my lap demanding my attention and saying that “It’s broken” because one of the snaps on my robe just popped open when he crawled up. Priceless.

    Gotta take care of my boys now.

    Have a good day,

    Kathy

  14. Kev March 7, 2007 at 16:51 #

    I should have expounded more on this. Yes, he made some gains through ABA. But the reason we stopped the program is that he had almost no sessions of any type of therapy (neither ABA nor speech) during the holidays (for more than a month), which was very soon after starting chelation.

    Thats what I said. The only difference is you attribute them to chelation. I don’t.

    This probably surprised me more than any other replies I’ve gotten on your site. Kev, I truly don’t mean offense, but I read the blog entry you noted and your review was highly unscientific and far, far from inclusive. Would that I had the time and money to do research that would reveal the true numbers (accounting for those other than the handful that have posted to the sites mentioned).

    Yep, I didn’t claim it was in any way scientific. What I claimed was that on the sites of the people who collect and collate such things, the rate of ‘success’ has a 5% positive rate. Are you dismissing the words of Bernie Rimland? Do you have any sites that I missed. Brad Handley says there are ‘thousands’ of cured kids – where are they?

    Sorry, haven’t done research into that. Am excited, though, about the new research that just came out indicating that reversal of Rett symptoms may be possible in the fairly near future. Will find the reference for that if you want it. Oh, and how in the world do they qualify as idiots? Because their research results differ from your opinion?

    They qualify as idiots due to their statment that the envioronment unfailingly plays a role in autism. Rett syndrome is purely genetic. As for the recent study. I reaclly suggest you read up past your excitement to get to the facts. In order to be ‘reversed’, the Rett mice needed to be bred with a genetic ‘switch’ to be turned on in order to reverse the Rett symptoms.

    What ARE your thoughts on causation then, if not purely genetics?

    That environment plays a role. I like Minicolumns at the moment.

    I never said that, nor intentionally implied it (nor do I believe that to be the case). My comments were merely in response to the implication (outright statements, actually) on this blog that if you DO chelate or provide certain biomed care for your child that you somehow don’t love them.

    Would you like to show me where I’ve said or implied either of these things?

    Now that’s damn rude. Now if you ask me whether I’m glad that my 15 month old doesn’t seem to be exhibiting the autistic behaviors that my 3 year old did at that age, or whether I’m glad that my 17 year old is not autistic, my answer to both would be “yes.” Does that make me a bad parent or indicate that I don’t love my 3 year old? I don’t think so, but if you decide you’re somehow worthy to judge otherwise, so be it. As I said, if you took a glimpse into our household, I believe you would judge otherwise.

    I have no idea what you’re talking about. I am also glad that my 20 month old and 14 year old aren’t autistic. This is because I love them just as they are. In the same way, I love my autistic daughter just as *she* is. Love is not about turning someone into someone they’re not. Thats my point.

    Hedge our bets with ABA? I’d prefer the term, “Research and do everything we believe will help our child.” Before your shackles get raised, I’m not saying you aren’t doing what you believe will help your child. I’m just saying that I believe there might be other things that would help your child that you haven’t pursued (or pursued fully). Again, please re-read my comments on my neighbor’s daughter. And as to the ABA…as I mentioned, we discontinued it when we realized chelation works far better than ABA.

    Yeah, you’re not the only one who ‘realized’ that. I absolutely assure you chelation will not turn your son from autisitc to non-autistic.

    Is this the same boy who was killed by a pharmacy error when given a sound-alike drug? I’m not being sarcastic. I’m seriously asking if that’s to whom you’re referring. Don’t have time at the moment to check. But I think that’s the one.

    Yep, thats the one. He was not killed by a pharmacy error. He was killed by the only type of chelator that Roy Kerry ever stocked. Here’s the order against Kerry, one point of which reveals:

    _”Respondent stated…that Disodium EDTA is the only formula of EDTA he stocks in his office”; he “admits that CaNa2EDTA is available but that he has never used this agent”_

    You can educate yourself here.

    Should I somehow be blamed or considered connected to them just because I seek biomed treatments for my kid…gimme a break.

    Who’s blaming you Kathy? Not me. I’m simply showing you that you aren’t as knowledgeable about this treatment modality and the quacks who weild it is you seem to think. So far you have betrayed ignorance on:

    a) Rett being purely genetic
    b) The killing of Tariq Nadama
    c) The type of people who populate your chosen field

    A little knowledge is a dangerous thing Kathy.

  15. anonimouse March 7, 2007 at 18:11 #

    Kathy,

    While autism may have an environmental component, nobody knows what that component is. I’m sure the Vanderbilt folks don’t know either.

    You’d prefer to believe that autism is caused by vaccines because that’s what your inner circle have conditioned you to believe. In some places we call that a cult.

  16. MsClark March 7, 2007 at 19:04 #

    ” “Well, at worst it will do nothing” and we’ll waste a couple of months of time and money. I had heard that as the metals are redistributed within the body, some kids again demonstrate the worst of their behaviors that they might not have shown for a while. We experienced this with our son on the second day of the first round of chelation. He smeared poop…which he hadn’t done in 7 or 8 months. Tell me TD doesn’t do anything. Okay, so now perhaps you’re saying, “See? It’s bad for him because you saw a bad result.” That one instance of poop smearing and somewhat more hyperness and less solid poop while on round are the only negatives we’ve seen. Everything else has been amazing. On his first round, he said things we’d never heard him say and he began stringing words together in sentences as never before.”

    This is classic.

    Kathy you can not cite any science on transdermal chelators because no one has tried to see how much actually passes through the skin. No one has bothered. Rashid Buttar promised some years ago that he would do that research, but he never did it. I think he knew enough chemistry to know for a fact that DMPS (his brew) was a molecule of the sort that does not pass through skin readily. See, skin is built to keep chemicals OUT of the body, not to draw them in, so it’s not that common for a chemical to be able to pass through the body.

    I would put it to you that not on have no molecules of DMSA passed through your childs skin, but that if a few did, there wouldn’t be enough there to chelate any mercury. And in fact if you are using DDI labs, they have returned high mercury readings on two known mercury free samples of lab created “urine.” You have been duped.

    Dr. Quig, the guy who gave the run down on which chelators were the most effective, actually said that transdermal chelators don’t pass through the skin, so I have read from someone who was there at that DAN! conference. He’s the head “science” guy at DDI lab. He looooves all the mercury parents who keep sending him urine samples for his nice red, green and yellow lab reports that are misleading, according to some of his own customers. (They compare provoked urine samples to unprovoked levels, and besides they gave two different high mercury levels for known mercury free faux-urine.)

    You (and your husband?) decided that TD DMSA was going to be the thing to help your son and you transmitted that confidence to your son by your and your other family members behavior. It’s the placebo effect by proxy and it’s been shown scientifically to “work” in autism.

    Parents whose kids got injections of saline claimed they made tremendous gains (in a double blind study of secretin) after the study was unblinded the parents were told that their kids had been given saline, and at least one of the parents said, “that’s OK, we’ll keep giving him saline injections then, because they WORKED for our kid.”

    That’s a cult victim. I would say you, too, were a cult victim, the cult of autism-mercury quackery. Maybe some day you’ll figure that out.

    All of the quack therapies have devotees. And some of the quack therapies are patently placebos like homeopathy’s magic water drops, and NAET. But there are people who are more than willing to suspend disbelief and put their kids on these therapies, and guess what? They see these GREAT gains, unbelievable progress, healing regressions and everything!! And the quacks lap up the dollars and adulation with a big smiles on their faces.

    You’ve been duped. Sorry. It’s perfectly obvious. You’re son hasn’t even been “chelated,” and you are will to attribute his developmental gains to “chelation” that has no evidence that it could help rewire a brain anyway.

  17. Kathy N March 7, 2007 at 20:05 #

    I never claimed to have done a ton of research on Rett Syndrome, Tariq Nadama, or the DAN practitioners other than the one we see. In fact, I think I even made that quite clear in my prior post when I stated that I had not done research on Rett Syndrome and asked for information about Tariq Nadama. If I had said, “Oh, I’m an expert in these areas and let me tell you all about it,” why then you would have room for complaint. What I’ve done is what people in the medical field call “specialization.” I’ve spent my time researching information specific to things that would help my son. As a by-product, I’ve learned a little about some other issues along the way. I will be more than happy to read the links you posted and to look at more info about the Rett Syndrome research, but I do not plan to spend hours upon hours of my life researching those things. There’s not enough time in the day to do that and take care of my kids at the same time.

    While I do not claim to be an expert in all matters relating to autism, you, sir, appear to believe that you are with statements like the following:

    I absolutely assure you chelation will not turn your son from autisitc to non-autistic.

    Again, I beg, no insist, to differ. Perhaps at the end of the year when I expect we’ll be very close to finishing up the chelation process, I will invite your family to dinner with my family and show you “before” videos of my son so you can decide for yourself. Want to visit Florida? 🙂

    You said: “Are you dismissing the words of Bernie Rimland?”
    What are you talking about? What have I ever said that dismisses the words of Dr. Rimland? I’ve told you that I believe that some kids get better without biomed. I’ve also told you that I have concerns about residual issues that might not cause too much concern until later years. How does that dismiss Dr. Rimland’s statements in any way?

    You said: Do you have any sites that I missed. Brad Handley says there are ‘thousands’ of cured kids – where are they?”
    If you just do a Google on “autism recovered,” I think you’ll get a plethora of sites to review. Some of the people with recovered kids are on the Yahoo groups to which I subscribe. Some nice recovery videos were posted not too long ago on the ARI site (and I researched and found out the e-mail address for Slater’s mom and asked her what she did for her son–she ONLY did biomed interventions and was able to stop just shy of chelation). Again, I wish I had the time and money to do a comprehensive study that would do the subject justice. Alas, I don’t.

    Just to open a can of worms because I’m curious about your response: What are your thoughts on Andy Cutler, PhD, and Dan Olmsted?

    Kathy

    P.S. I’m serious about my offer for a dinner meeting toward the end of the year.

  18. Lucas McCarty March 7, 2007 at 21:50 #

    Perhaps if you didn’t specialise so much and instead focused on Autism research itself as a whole you’d see plenty of signs leading away from the Mercury hypothesis. Claims about Autism having certain features are consistently made and consistently don’t have any evidence, but are anyway used in arguements about how one therapy or intervention ‘removed’ them.

    They also tend to ignore all the evidence that Autistics(all of them) have demonstrable strengths not found in non-Autistic populations, but are constantly ignored, disregarded and demeaned. Explaining how Mercury could cause such inherent strengths is beyond the means of proponents of the Mercury theory.

    Did you ever look into the extraordinary studies showing regardless of the treatment and it’s effectiveness, parents still consistently showed satisfaction with it even though is was demonstrably placebo-by-proxy? What makes Chelation any different? That’s why ‘before and after’ ancedotes are completely meaningless.

  19. clone3g March 7, 2007 at 22:36 #

    Kathy, I’m sorry but you are NOT a skeptic and looking at websites on biomed treatments does not qualify as “research”

  20. anonimouse March 7, 2007 at 23:02 #

    Kathy is a true believer. She’s no different than the rest of the mercury cult, really. In their eyes, autism is caused by vaccines. They know it, there’s no reason to debate it, and if they do something that gets rid of the poisons vaccines leave in a child’s body their child gets better.

    It doesn’t matter that they have no proof of this other than their own observations. It doesn’t matter that I can point to thousands of autistic children who improved WITHOUT chelation or biomedical treatments of any kind. It doesn’t matter that the doctors hawking these treatments don’t publish any real studies. The mercury cult has all of the answers to these questions, just like the Scientologists (oooh, smell the irony) have pat answers to criticism of their “religion”.

  21. Ruth March 7, 2007 at 23:31 #

    What are your thoughts on Andy Cutler, PhD, and Dan Olmsted?

    Cutler is probably a good inorganic chemist, but he lacks the tox background and shows a poor understanding of biochem. If you want to know someone with real experience with mercury toxicity, check out Dr. Thomas Clarkson of the University of Rochester School of Environmental Medicine. He has seen more cases of documented mercury poisoning than most doctors-run his name through a Pubmed search.

    I am mom to 2 kids on the spectrum as well as a toxicologist. Mercury poisoning looks nothing like autism. My kids have made all the gains your child has without biomed treatment. The kids on the GR videos are no more ‘cured’ than my kids. Autistic kid + time + good education=happy, productive autistic teen.

  22. Friend in California March 8, 2007 at 05:36 #

    Kathy –
    I would have no problem with you looking in on the conversation between Seth and I. We both, as expected, have gained some perspective, and both, as expected still disagree with each other. Though I would not post here any of Seth’s comments to me, as they were made under the assumption of confidentiality, I will post one of the comments I made to him that I feel is highly relevant to this discussion, and is really just another way of stating what Ms. Clark said above:

    “I fully acknowledge that you are seeing improvements in your son during the
    course of the various treatments he is receiving. I also think it is
    important to note that: my son is improving also, dramatically at times,
    without any biomedical interventions at all. This is the greatest
    smokescreen of all for the sellers of alt therapies for autism – that most
    autistic kids naturally progress rapidly in the years following diagnosis.
    Natural maturation processes take place, language usually develops to at
    least some degree, perseverations tend to reduce in intensity, obsessions
    (like lining up trains or cars or whatever) tend to naturally diminish in
    intensity – with or without biomed. I challenge any parent who puts their
    child forth as being proof of the miracle of biomed to prove, through any
    means at all, that the so-called “cure” their child has undergone is
    directly the result of the treatments, and not the result of natural
    improvements that any 4-8 year old undergoes. This can not only be a
    blinder for the parents, but also for the practitioners. If you prescribe
    B-12 injections consistently over time to a group of patients, and, say, 80%
    show notable improvement during the 6-12 months that they undergo this
    treatment, it would be very easy to fit the results into your self-created
    paradigm that it is the B-12 injections that are resulting in the
    imporvement. When, in reality, there is no hard evidence that this is the
    case. Nor can anyone – no one, nowhere, at no time – show how the B-12
    might work, what biological mechanisms cause the supposed results, compare
    brain scans before and after to show true differences in brain activity as a
    result of the treatment, or have any epidemiological evidence to show that
    it works. It is purely conjecture – a self-created myth, backed by biased,
    self-fulfilling evidence … Even if the practitioner believes it himself, as I stated in my last email,
    this does not excuse him from following universally accepted codes of
    ethics.”

    You see, there is no one reading this discussion who is in any way disturbed that your son is changing, growing, exhibiting different behaviors. But what bugs most of us about the whole thing is that the gains are attributed to a bogus treatment like chelation. If you feel pretty wonderful now about watching your son improve, imagine how good you would feel if you “knew” that it was the efforts and accomplishments of your son himself, aided by a loving family, the way you currently “know” it is the result of rubbing some cream on his skin. Do you see the difference? And what happens when there is some slip-back in behaviors? When he clams up verbally for a while, or just wants to be alone for a few hours and you mistake it for “regression”? Well, you answered that one already, I believe – you step up the treatment. And if the oral chelators don’t work? What then? Since you are convinced that your son needs biomedical interventions to show improvement, do you go to B-12 injections? Maybe IVIG? Are you also considering Lupron?
    I am not saying directly that you will do these specific things, but I hope you can see the point that causes such concern.
    Autism is not a disease. Autistic behaviors anf thought processes result from differences in the overall makeup of the brain’s structure – the extent if which are not yet known. There is absolutely no scientific evidence that the presence of heavy metals, regardless of toxicity levels, play any role whatsoever in autism. How exactly, then, does removal of heavy metals change autistic behavior? There are too many holes in the argument that “I saw it happen, therefore it is true”. This position can be powerfully self-delusional. We are not going to change your mind, Kathy, but I sincerely hope we have at least given you something to think about.
    Lastly, there is one link I would really like you to look at: http://www.autism-watch.org/about/bio2.shtml
    Please read this. I think you might find it … enlightening.
    Steve

  23. Kev March 8, 2007 at 09:31 #

    What I’ve done is what people in the medical field call “specialization.” I’ve spent my time researching information specific to things that would help my son. As a by-product, I’ve learned a little about some other issues along the way.

    And then you saw fit to come onto a website and evangelize in a generalising way about matters that you admit you don’t understand. I have to say I personally find it absoutely shocking that the parent of an autistic child didn’t realise that Rett was a purely genetic condition and saw fit to trumpet a paper that therefore cannot possibly be accurate to back up your beliefs. I also find it very rude that you use this bad science to justify your own beliefs and further use your own beliefs to patronise those of us who don’t share them.

    I will be more than happy to read the links you posted and to look at more info about the Rett Syndrome research, but I do not plan to spend hours upon hours of my life researching those things. There’s not enough time in the day to do that and take care of my kids at the same time.

    Sounds like Doggerel 59 to me. Are we to beleive you have plenty of time to research and review woo science but not its opposite?

    While I do not claim to be an expert in all matters relating to autism, you, sir, appear to believe that you are with statements like the following: _”I absolutely assure you chelation will not turn your son from autisitc to non-autistic.”_

    This is because it simply can’t. Even if your child is metal poisoned, all that chelation can possibly do is remove the metal. It can’t repair the ‘damage’.

    Want to visit Florida? 🙂

    Not particularly. When I vist the US it will be Illinois I visit.

    What are you talking about? What have I ever said that dismisses the words of Dr. Rimland? I’ve told you that I believe that some kids get better without biomed. I’ve also told you that I have concerns about residual issues that might not cause too much concern until later years. How does that dismiss Dr. Rimland’s statements in any way?

    So, let me see if I understand you. You say in one comment that you’re surprised I would count recovered kids and use Rimlands words to support my case and now you’re saying that you weren’t saying that?

    If you just do a Google on “autism recovered,” I think you’ll get a plethora of sites to review. Some of the people with recovered kids are on the Yahoo groups to which I subscribe. Some nice recovery videos were posted not too long ago on the ARI site (and I researched and found out the e-mail address for Slater’s mom and asked her what she did for her son—she ONLY did biomed interventions and was able to stop just shy of chelation). Again, I wish I had the time and money to do a comprehensive study that would do the subject justice. Alas, I don’t.

    No, no, no. I’m asking *you* to post me links to sites where it is shown that thousands (or any number you like actually) of kids who were diagnosed with autism are now – after only using biomed – not autistic.

    What are your thoughts on Andy Cutler, PhD, and Dan Olmsted?

    I think we have enough to be discussing right now. Lets get through what we’re talking about now then we can turn to these subjects.

  24. Kathy N March 8, 2007 at 15:05 #

    I’ve been trying to comment (three times) and it hasn’t been going through. This is a test to see if that’s just a fluke.

  25. Kathy N March 8, 2007 at 15:06 #

    Finally…a post that posted (see above). I’m off to a playgroup for my children. When I return I will gladly retort.

  26. Seth L March 9, 2007 at 04:04 #

    Kathy N, Friend (Steve) and I have had an enjoyable, civil, exchange about these topics. We didn’t bash each other, we simply expressed our different views. We respect and like each other. There is so much on this blog that is, in my opinion, not constructive that I have come less and less. The best thing is, I’ve gained a friend. Biomed supporters shouln’t even infer that nons are in any way not trying their best to help their child. Likewise, non-biomeds shouldn’t accuse biomed parents of somehow trying to change their child because they are unhappy with or do not accept or love the child as they are, or further that they are somehow trying to boost some parental worth or whatever by treating in this way. Both criticisms are equally wrong. We all love our children, and we all are making decisions that we feel are best. As I said many entries ago, sharing opinions/information is great, but does anyone really expect to help anyone else by beating them down? Words are powerful, this subject is very sensitive. That is a combustible combination. My discourse with Steve made me realize how kindred we are, in spite of our different views. Mutual respect is the key, I believe.

  27. Friend in California March 9, 2007 at 05:13 #

    Well said, Seth. I agree on many points.
    Although as you know, from our conversation, I staunchly support the position that biomedical interventions are not “the answer”, and furthermore are hamrful in numerous ways to the subject child, to the parents, and to the autism acceptance movement in general, I am glad we have been able to offer each other some perspective and conduct a civil exchange of views. And I think you have taken my point that, while it is important to conduct the debate in a non-belligerent manner, the point of view that I and many others who frequent this site espouse is one worth defending against ad hoc attacks.
    Let’s see if, as some of my recommendations for consideration sink in over time, you find this website to be of more value.

    Ummmmmmm ……. is this a good time for a group hug? 🙂

  28. Seth L March 9, 2007 at 06:04 #

    OK Steve, Civilly and cordially, and although as you know I respect but disagree with many of your opinions, quite frankly, when drawing position lines over this issue, the term “autism acceptance movement”, to me, connotes the criticism that I mentioned I thought was unhealty in my last entry—not that anybody here cares. You’re busting your butt to try to help your child, in numerous ways that you shared with me. Because it does not involve some biomed treatments that you don’t approve of (which is fine by the way and shouldn’t be criticised), does that mean you accept autism more than a parent that is pursuing different treatments? As far as this site and the majority of it’s bloggers are concerned, the vast majority of ad hoc attacks come from your “camp”, or “movement” or whatever, rather than you and your group defending yourselves. Most of the blogs by the people that you are in agreement with are hardly defensive in tone or content.

  29. Kathy N March 9, 2007 at 07:20 #

    Hey, Seth. Just be thankful your posts are still being posted. 🙂 I guess that dissent equals an “ad hoc attack” based on the fact that my posts are no longer showing up (though I’ll be curious to see if this one does). Kev??

  30. Kev March 9, 2007 at 09:07 #

    re: comments not appearing. All false modesty aside this is a popular site and as such attracts a lot of comment spam, therefore I have to put spam catchers at a much higher level of alertness than I normally would, or would like to (for example 2 or more links in a comment will trigger the script, as will repeat posting of the same comment).

    Best thing is to post your comment. If it doesn’t appear, don’t try and keep posting it as that is typical spam behaviour and will trigger the script. Just mail me instead and I’ll try and find and free the comment manually.

    Its either this way or have to look at some fairly hardcore porn spam (amongst other things) of which I get about 200 plus a day. Bear with me.

    re: civility: I try and encourage it as much as possible. I will always try and respond in the manner I think I’ve been treated in by a commenter e.g. rudeness = rudeness. Politeness = politeness. However, I am not above losing the plot just be myself, in which case I’d apologise by email.

  31. Ms Clark March 9, 2007 at 10:16 #

    Re: spam filter. If you notice you can see that my name went from “Ms Clark” to “MsClark” recently in comments here, that was because Kev’s spam filter really doesn’t like me for some reason and tends to snag my comments more than most other regulars (apparently it really likes to snag one other hub blogger as much as it likes mine). So I tried to change the way I entered my name and that worked. After a few times as “MsClark”it started to not like me again.

    I don’t know if this one will get through…

    So if anyone notices that it seems like I’m not answering, it’s probably because I tried a few ways and it didn’t work. Sometimes the answer doesn’t seem like it’s worth the effort to bother Kev to dig it out of the dust bin. Not that he’s ever complained.

  32. jypsy March 9, 2007 at 11:08 #

    Very interesting…. I have the harderst time posting on blogger blogs, for different reasons (my lack of highspeed mostly) but, (knock on wood) Kev’s blog always quickly says what I say when I “say it!”
    I’ll enjoy it while it lasts

  33. Kathy N March 9, 2007 at 21:15 #

    Hmmm…where to begin. Well, to start, here’s what I tried to post thrice that didn’t get through:

    In response to the comments about seeing great gains and only depending on my own observations, well silly me…how foolish of me to trust my own eyes! It’s obviously much wiser to depend on strangers to tell me what I’m (supposedly not) seeing. Actually, though, knowing the placebo effect and knowing that I wanted to avoid that at all costs, I kept a complete poker face and avoided all but the most basic communication with the ABA therapists when they came back for the first team meeting after the long holiday break. I stayed busy in the kitchen while the two therapists played with Aidan nearby as we waited for the program manager to arrive (I was close enough that I could still hear the therapists’ comments). When the program manager finally showed up about 15 minutes later, all I kept hearing from her was a string of “Wows” each time Aidan said and did something she’d never seen (and in many cases, worked on) before. One of the therapists commented to the program manager, “Oh, I think you’re going to be very surprised,” and the other therapist said, “Yes, you will.” And she was.

    Even more important to me, though, was when we visited a friend’s house right after the holidays (it was Jan 5 to be precise). My friend has a seven-year-old daughter who hadn’t seen Aidan for about two months prior to that visit. Her daughter kept going around all evening saying, “Aidan can talk now. Aidan can talk now!” As I’m sure you know, seven-year-olds typically aren’t known for their skill at regulating their comments. I’d say they’re better known for their brutal honesty. In this case, we were glad for it.

    Now to get past my anecdotal evidence, which you obviously don’t view as important (but which I view as incredibly so)…

    Regarding my skepticism, here’s what I believe puts me in the category of skeptic (other than the fact that I tend to jump (sometimes too quickly) to the conclusion that something is a scam (Snopes.com rocks!): I’m sick and tired of the twisting and turning of “facts” derived from datasets…and this is the case throughout the realm of science. Two different researchers view the same dataset and come up with completely different conclusions. It’s all in the way you interpret the data, isn’t it? In grad school this frustrated me to no end.

    MsClark said:
    Kathy you can not cite any science on transdermal chelators because no one has tried to see how much actually passes through the skin. No one has bothered.

    So on the flipside, you cannot cite any science that proves that it DOESN’T work, can you? That’s why I’m going with what we’re experiencing. By the way, if you think that TD chelation doesn’t work at all, why are you in such a huff about people (supposedly) wasting their time and money on it? They waste their time and money on other things that have been PROVEN to harm them–cigarettes, fatty foods, etc.–so maybe your time would be better spent posting on anti-cig, anti-cocaine, etc. blogs).

    I hope people realize when I’m saying things (like the last sentence above ) tongue-in-cheek; however, I have to admit that a thought that has crossed my mind more than once as I’ve read some more posts within this blog is this: It makes sense to me that people who have tried something and either seen wonders or horrors from it would be eager to pass that information along (good old word-of-mouth), but why would someone who has never (or barely) dipped their toe into something rail against it? I understand why companies with a competing product might try to make the competition look bad, but it’s certainly not fitting here. We’re not in a competition. I’m just trying to do the best by my son as I’m sure you are with your child(ren). I’m hesitant to make this next statement, but it’s gone through my head even more than the prior thought: I have to wonder if there’s not some guilt playing into the picture here. That maybe you sometimes worry if you are doing all you can, or should, for your child. I know toes have been stepped on by that comment, but the very thought that propelled us to check to see if our son had issues with gluten and casein (our first step in the process–thank goodness we followed through on it–see my posts from many months back in this blog if you want to see the results we had from going GFCF)–is that we didn’t want to look back ten years from now and wonder if we had done everything we could for our son.

    To clear something up, btw, I do not believe that vaccines were the only thing that played into my child’s being on the spectrum (he’s in the PDD-NOS category, as ridiculous a categorization as ever I’ve heard). We’ve got quite a lot of immune system issues in our family. My side has allergies out the wazoo (my brother had quite the problem with eczema as a child), and my husband has ankylosing spondylitis (in the family of rheumatoid arthritis, but worse). As I think I mentioned in a prior post, I had amalgam fillings drilled when I was pregnant (oh, the remorse). I also had an extended exposure (all day long) to Pitocin during Aidan’s birth. All of these are pieces of the puzzle to me.

    Lucas, you said “Claims about Autism having certain features are consistently made and consistently don’t have any evidence, but are anyway used in arguements about how one therapy or intervention ‘removed’ them.”

    To what features are you referring? Just curious. The features I’ve seen change for the better (not just for me, but I believe for my son as well) are lifelong diarrhea (though we still have some issues with this, but it’s much better), lymph nodes that were constantly raised into hard nodules (asked the doc about them, she said don’t worry about it–maybe that’s true, but that doesn’t seem okay to me), OC (repetitive) behaviors (lining up shoes and CDs, turning light switches on and off, opening and closing doors, etc.), not turning to his name (even when we practically screamed it to get his attention), not pointing or speaking to indicate what he wanted (we’d walk into the kitchen and he’d be in the pantry, so I’d say, “Well, I guess you’re hungry, Little Dude,” not doing even the simplest things on command (even things that we were pretty dang sure he would want to do if he understood us, which we don’t think he could), losing skills (for instance, he used to be able to blow on command (out of his nose and/or his mouth) but at his second birthday, he couldn’t blow out the candles), making the sound “luddah-luddah” by moving his tongue to the top of his mouth and pushing it in and out while rubbing it against his upper lip (he actually lost all ability to move his tongue to the top of his mouth), stuffing his mouth while eating to the point of gagging (not just for fun, but every bite), saying phrases over and over completely out of context, bouncing while making a grunting noise to the point of going through three crib mattresses, being oblivious to his peers, smearing his feces, gnawing to an extreme (not related to teething) on items like toothpaste tubes and his hands, not being able to learn things through verbal instruction (needing to have it demonstrated instead while often he screamed at us for interfering with him), having a fixation with my hair (actually, this is the one thing where we haven’t seen dramatic change like the rest–I used to joke that he loved my hair more than he loved me), toe walking (not tons, but some), running in circles to an extreme, seeming not to care if anyone interacted with him and avoiding eye contact (the last two items started happening right before we began GFCF). So Lucas, does my list fit into what you’d call not worthy to be considered as features that are actually autistic (if I’m understanding that that’s what you were meaning)? As I read through the list, it makes me realize just how incredibly far my little guy has come in such a short time. He rocks! And btw Kev–please don’t try to tell me that ABA is what took away the OC and other behaviors listed above. They didn’t do squat for any of those. You’ll probably revert to “Oh, then it was just a matter of time and growth.” Well, then here’s one more anecdote (sorry, without good data (on either side, I might add–i.e., where’s your proof of thousands of autistic children who simply “grew out” of their autistic traits?), it’s what we have to go with…

    A guy who works with my husband (gee, they’re software engineers–go figure–gotta love those autism-statistic-raising-professions (scientists, accountants, engineers, computer pros, and doctors)–anyway, this guy’s son (diagnosed with autism at age 3) sounded so similar to mine (bounced like Tigger, lined things up, precocious with letters and numbers, etc.) that my husband and he started talking at work. Come to find out, his son got tested for gifted this year (first grade, if I remember correctly). His son scored AMAZINGLY well…on the parts that he would do. He would get a 15 out of 15 for the parts he would not scream and tantrum to get out of. For the other parts, they had no choice but to give him zeros. He just missed being placed in the gifted program by a hair. Is being placed in gifted the end-all be-all? No, of course not (I know firsthand because my brother, my daughter, I, and several other members of my family were placed in gifted as youngsters.) What it shows is that this incredibly bright kid still has something going on inside him that causes him not to do some things. Whether it’s not being able or not wanting to do those things is not really at issue. What is at issue is whether this could also in the future prevent him from succeeding at something. I know, I know. We’re all different. We all have strengths and weaknesses. I believe this is something different altogether.

    Ruth-You said: “I am mom to 2 kids on the spectrum as well as a toxicologist. Mercury poisoning looks nothing like autism. My kids have made all the gains your child has without biomed treatment. The kids on the GR videos are no more ‘cured’ than my kids. Autistic kid + time + good education=happy, productive autistic teen.”

    Have you ever met (in person) a mercury-poisoned kid? And what type of mercury and what route was the exposure? No sarcasm. Just curious. Also, I disagree with your equation at the bottom of your quoted text above. What about the parents who did put in the time and education (and I’ll add this to the equation—love), yet their child still functions at the level of a 5 year old, never standing the chance of self sufficiency? Does that person still have something to offer to the world and him/herself? Yes. Is that person what I (or you?) would consider a “happy, productive autistic teen?” Not in my reality.

    BTW, just throwing this out there–This was the paper that first concerned me about the fact that I had amalgams removed while pregnant:
    http://www.intox.org/databank/documents/chemical/mercury/ukpid27.htm

    Kev-You said: “And then you saw fit to come onto a website and evangelize in a generalising way about matters that you admit you don’t understand I have to say I personally find it absoutely shocking that the parent of an autistic child didn’t realise that Rett was a purely genetic condition and saw fit to trumpet a paper that therefore cannot possibly be accurate to back up your beliefs. I also find it very rude that you use this bad science to justify your own beliefs and further use your own beliefs to patronise those of us who don’t share them.

    If my expressing an opinion with which you don’t agree is therefore evangelizing, then no wonder you have such a problem with the people who are vocal about how biomed treatments have worked for their kids. Or am I misunderstanding your comment? Did you think I was evangelizing by simply mentioning some research? You’re reading way too much into those statements if that’s the case.

    You said: “I personally find it absoutely shocking that the parent of an autistic child didn’t realise that Rett was a purely genetic condition and saw fit to trumpet a paper that therefore cannot possibly be accurate to back up your beliefs.”

    What?!? Dude, are you on crack? 😉 How did you deduce that I (supposedly) didn’t know that Rett is a purely genetic condition? You’re jumping to conclusions here. I am quite aware of that fact. In trying to figure out where in the world you got the idea that I wasn’t, I went back to the Vandy research reference I placed earlier just to be sure they didn’t specify that they were including Rett in their conclusion (as that’s the only logic trail I could possibly figure out for how you somehow arrived (erroneously) at the conclusion that I’m not aware of Rett’s genetic basis. I see nowhere in the paper where they specify Rett. Now unless you interpreted the following quote from the article to indicate that they included Rett, I’m just at a loss as to your thought process:

    “Dr Pat Levitt and colleagues at Vanderbilt University in Nashville, Tennessee, studied 743 families in which 1,200 family members were affected by autism spectrum disorders, which range from fully disabling autism to Asperger’s syndrome.”

    I just took a quick look around to find the VIDEO I had watched—I think you thought I had read a particular paper (nothing so lofty as the actual research report if that’s what you thought)—with the news about the potential future benefits from the Rett study (as I recall, the video had interviews with affected families). I didn’t find it readily, but I came across a NYT article, which had the following:

    “The treatment for the Rett mice would not work in people because it involved genetically engineering the mice before conception. But by showing that the neurons are intact, except for the stricken gene, the finding may encourage new approaches. “It gives renewed hope that Rett syndrome will be a treatable disorder, and maybe autism as well,” said Monica Coenraads, co-founder of the Rett Syndrome Research Foundation. Fred Gage, a brain expert at the Salk Institute, said, “A renewed optimism for finding a therapy for these types of diseases is warranted, I believe.”

    This was the kind of hope and excitement I was talking about in my earlier post. Not that there was an immediate treatment option, but hope for the future (which I thought I made quite clear, actually).

    You said: Are we to believe you have plenty of time to research and review woo science but not its opposite?

    I do my best to review what I can, but in addition to being a SAHM to three kids, I also do contract work on the side and keep up a fairly busy social schedule. So, as I said before, I do not claim to know everything about everything. If anything, it seems that you are far more inclined to make that claim than I.

    You said: This is because it simply can’t. Even if your child is metal poisoned, all that chelation can possibly do is remove the metal. It can’t repair the ‘damage’.

    Well, thank you for at least being willing to posit what might happen if chelation works (I really do like what I’ve read about you Kev, this post perhaps seeming to the contrary). It might not repair the damage already done, but my goal is that it will prevent more from occurring. Just as with children who undergo hemispherectomies, they can often recover from brain insults SO WELL when done at a young enough age. (Oh, geez…please don’t read that to mean that I think chelation is equivalent to hemispherectomy…it’s just an analogy.)

    You said: No, no, no. I’m asking you to post me links to sites where it is shown that thousands (or any number you like actually) of kids who were diagnosed with autism are now – after only using biomed – not autistic.

    Okay…I’ll show you mine if you show me yours. 😉 The problem would be, as well you know, that most people (including myself) do not rely solely on biomed to recover their children. I’m not stupid (or gullible, despite the snide comments to the contrary–not so much from you, but from others here). I wouldn’t put all my eggs in one basket when it comes to my child’s future. As I’ve mentioned, we’ve now ditched the ABA and haven’t regretted it for a minute, but that was only after realizing the benefits we were seeing from the biomed steps we’ve taken. The only traditional therapy my son now receives is two 25-minute sessions of ST per week, where the focus is on articulation rather than language. I believe that the traditional therapies work best when biomed is occurring in the background (and that just makes sense–a kid who feels better physically is undoubtedly going to do better in therapy than one who does not). By the way, have you read the book “A Real Boy” by Christina Adams? Interesting stuff—combo of ABA and biomed. (And a heads-up to those who need it: biomed does not equal chelation. Some kids need it, some don’t.)

    All that being said, I know of at least one (actually, maybe it’s two come to think of it) child who recovered solely through biomed. I can, and will, ask around and see if there are more who would be willing to share their info. I mentioned one of them in an earlier post actually. The child named Slater on the ARI website (not the GR site). Check out the video. I have permission from Slater’s mom to share the info on what they did with their son, so if you like, I will post that as well.

    Kathy

  34. Friend in California March 11, 2007 at 04:58 #

    Kathy –
    I have a few questions for you.

    Do you agree that your son may have shown precisely the same changes in behavior during the same period of time in the absence of chelation?

    Are you absolutely convinced that mercury-or other heavy metal-toxicity plays a role in autism?

    Are you comfortable that there is a complete absence of long-term physical risk resulting from extended application of chelation therapy?

    Do you believe that, statistically, a 3-5 year old child who exhibits autistic behaviors has a lesser chance of self-reporting “happiness” at any future point in their life than a typical 3-5 year old? All other conditions being equal?

  35. MsClark March 11, 2007 at 06:13 #

    Here’s how a scam artist works. I learned about it on some public television, kids show when my kids were little.

    Dr. Butter (or Dr. Bratstreenk, or Katzinal or Nobrainder or Greem…, you pick one) says he has treated an autistic kid who has amazed and stunned his parents and teachers within a (day, week, 3 week, a month) of starting therapy TD_DMPx ™ (a worthless, untested, fake transdermal chelator with a molecule known to be of the sort that wouldn’t go through skin).

    He puts the word out to 150 parents through a DAMN! channel of some sort (Yayhoo groupees, for example). 100 of those parents can afford what the creep is demanding, and he even gives the treatement to a few who look like they are the enthusiastic, likely to be grateful and gullible sort.

    Out of that 100 the kids are going to have good days and bad days, good weeks and bad weeks in a randomly assorted manner (sort of like the normal distribution or bell curve). Lets look at the first 2 weeks following their getting TD-DMPx ™ which might come with some pretty complicated instructions if this is to work out really well for a con job.

    Lets say the kids who have 2 weeks straight with no changes in their behavior or health, nothing changes, they are in the middle of the bell curve. Some of the kids have one good day out of the 2 weeks so they are just to the right of the middle and some have 1 bad day out of 2 weeks so they are to the left of the middle (of the graphed normal distribution), and so forth, hopefully you can picture that out of 100 semi-randomly selected kids in a random 2 week period very few will suddenly have 2 really bad weeks, and very few will suddenly have 2 really good weeks (they start cooperating more, talking more, are happier… maybe the bully at school moves away and the stress if off the ASD kid now for the first time in a year).

    Just at random if you give this 100 kids a drink of “magic water” from a magic cup, a few of them will start to do better, a few will do worse, most will pretty much stay the same.

    So, back to our slime bag quack doc promoting TD-DMPx, he gets his first 100 kids on his nostrum and soon there is feedback. parents of about 34 kids will not notice much of a change, maybe a little change for better or worse, and about 33 kids will do worse (some of them will do much worse than average over that 2 weeks) and finally there are 33 where the kids are having a noticeably easier time with at least some aspect of their life (and out of that bunch 5 to 10 kids have some kind of big leap forward that lasts at least 2 weeks… again we don’t know what random even might happen to make the kid feel better or if mom gets rid of a noisy appliance or the weather changes for the better) .

    The thing is, with normal kids they have spurts and starts of development and “regressions”. There’s a sort of spiral chart of how kids have good years and bad years that I read in a ladies’ magazine or something, 4 years old is a good year, 5 is a not so good year, 6 is a good year, 7 is a not so good year… we all know about the bad rep that 2 year olds have.

    Autistic kids are more “brittle” in that they snap more quickly into good and bad periods, its more dramatic. I think they are more sensitive to their family environment, so if dad gets a better job it affects little Lisa, if mom decides to have an affair with her boss and starts acting dodgy and nervous at home, little Farnsworth might notice and start crying more.

    So with autistic kids, it’s not JUST the random affects of what’s going on in their lives, it’s also that mom and dad now have this big new HOPE all nicely polished up by the handsome and oh-so kind and attentive, Dr. Quackfield (or Krudsman, Jing, Milky, Jetson, Lackso, and lets not forget the one who killed Abubakar Tariq Nadama — Roy Kerry and his friend Dr. Usman).

    And back to the 100 customers of Dr. Butter-Quackfield: the ones who didn’t get much result might think that they just didn’t luck-out to have the kind of kid this worked on… some of them will keep trying and over the next year pay out thousands of bucks until some change happens and they then attribute it to the TD-DMPx, at the encouragement of Dr. Butter-Quackfield, of course (‘YOU have one of those TOUGH NUT kids, hang in there, you DO LOVE your child don’t you???”)

    The ones where the kids do worse, the con artist in MD drag will tell them “Buck up, mom and dad, it’s a healing regression. THIS IS A GOOD SIGN. Keep coming back now, ya’ hear? You did follow my instructions to the very letter didn’t you? Yes, I realize NO one can follow them to the very letter, but this must be the reason why its not working for Zelda. Try harder. Ignore the screaming, this is a good sign, I told you. Take the screaming kid out of here, would you?”

    The ones whose kids do better… Well! all you need is 5 or 10 of them who are willing to credit the TD-DMPx with the gains and to not be skeptical enough to credit the fact that the kid had some major life change simultaneously, or that the kid was just due for a period of gains in language, and not question what they (the parents) had done differently during that time that communicated positivity and hope to the kid for the first time in months (years).

    If just a couple of those 100 parents get on a Yayhoo! groupee list and start bragging on how Dr. Yackso-McScandless practically CURED their children practically overnight! (!!) Then Dr. Cave-Homes will have thousands making inquiries.

    Since it’s very rare for a disastified customer to go on a Yayhoo! groupee list and complain (because they’re pretty sure it was their fault for not doing it right and their kid is just a “tough nut” non-responder anyway), the voices of the satisfied and the not unhappy are the ones you hear on the groupee lists.

    You, Karen are likely one of those blessings to the quacks. They give you a non-chelating stinky lotion and tell you it’s bound to do wonders. They tell you to send your kids’ urine to a quack lab of known garbage quality. And you are just as a happy as a clam, but you don’t don’t clam up. No you go promote their wonder product all over sending more suckers into the arms of the con-men.

    That’s why I’m ticked-off deary. It’s highway robbery and worse, some kids are being harmed by DAN! quacks and one that we know of has been brutally killed.

    I’m not angry because of some guilt you imagined up. My child isn’t mercury toxic (neither am I) and I’m not about to give my money to some criminal minded jerk, or fool. Thank you very much.

  36. Kev March 11, 2007 at 08:01 #

    Kathy,

    I think you seriously need to review your contributions to this discussion. You are either very forgetful or very dishonest. An example. You first stated:

    Their research (published in Oct 2006) documents that there is a genetic vulnerability or susceptibility to autism that only when coupled with an environmental disturbance(s), leads to an expression of autism spectrum disorder….Without that environmental disturbance, there is no autism

    Then when I pointed out that Rett (a purely genetic condition) was on the spectrum:

    Me: Possibly they (and you) are unaware of something called Rett Syndrome? Please explain to me what the environmental aspect of Rett is.

    You: Sorry, haven’t done research into that….I never claimed to have done a ton of research on Rett Syndrome

    So then I say:

    I have to say I personally find it absoutely shocking that the parent of an autistic child didn’t realise that Rett was a purely genetic condition…

    And now you’re asking me if I’m on crack because of your bad memory or bad faith?

    Your answers to all questions are replete with this kind of shifting.

    This blog has been in existence for 4 years nearly Kathy. I’m fed up of being accused of feeling guilty because I think you’re making a mistake and experimenting with your kids.

    The reason I blog about this sort of thing is because it _has_ hurt kids and it _will_ hurt kids in the future. The people you associate with and encourage people to go see are not good people Kathy.

    You also seem to find it very very difficult to answer direct questions about your anecdotal claims.

    1) It is now clear that your son is undergoing therapies beside that which you think are ‘curing’ him of his autism. Why do you do them if chelation will ‘recover/cure/whatever’ him. Lets not forget that you said:

    Me: I absolutely assure you chelation will not turn your son from autisitc to non-autistic.

    You:Again, I beg, no insist, to differ.

    Thats a pretty unequivocal statement. You don’t seem to be living by it though.

    2) I asked you to provide links to the ‘thousands’ of recovered kids you claimed there were. I note you haven’t. You have however said:

    All that being said, I know of at least one (actually, maybe it’s two come to think of it) child who recovered solely through biomed.

    I added those figures (2) to the population I already had. The percentages didn’t alter. Biomed ‘recovery/cure’ rate is still around 5%.

    My personal opinion is that you are desperate to cure your child for your own reasons. You have convinced yourself that believing quacks and disbelieving science makes you a skeptic and now you are having to critically examine your statements you are finding yourself not quite as able to back them up as you assumed you would be.

    You need to at least start being honest with yourself, if no one else, Kathy.

  37. Kathy N March 11, 2007 at 11:51 #

    Friend–You said:
    Do you agree that your son may have shown precisely the same changes in behavior during the same period of time in the absence of chelation?

    I wouldn’t think it likely, no (and I just asked my husband for his opinion, and he said the same). I don’t think many children go from being all the things I described in my prior e-mail (unresponsive to name, bouncing for hours on end, OC, and so forth) to being what my child is today after only a year of intervention. Don’t get me wrong. He’s not caught up with his peers just yet, but he’s certainly getting there fast (especially since we began chelation).

    You said:
    Are you absolutely convinced that mercury-or other heavy metal-toxicity plays a role in autism?

    For my child, yes. Not necessarily for all, but I definitely believe it is an issue for mine.

    You said:
    Are you comfortable that there is a complete absence of long-term physical risk resulting from extended application of chelation therapy?

    I believe there is more danger and long-term physical risk from leaving the metals in place than from slowly but surely removing them via chelation (with supplemental supports in place, of course–calcium, magnesium etc.).

    You said:
    Do you believe that, statistically, a 3-5 year old child who exhibits autistic behaviors has a lesser chance of self-reporting “happiness” at any future point in their life than a typical 3-5 year old? All other conditions being equal?

    Hmmm…after a good deal of rumination, my answer is that I don’t know. There are too many variables in play, and your question leans very far into the hypothetical. You’re asking me to jump into the head of someone who exhibited autistic behaviors between 3 and 5 yo, and then project whether that person would report being less happy than others in the future. I’ve read accounts (and spoken with) autistic adults who are very happy with their lives and others who were extremely miserable and just waiting (and literally praying) for death. Do you know of research that has been done to survey this? I would be interested to see it.

    MsClark (I started to type MsClack but decided not to–oh wait, I guess I just did)–
    You said ummmm, well, you said a whole lot of stuff that’s not applicable to anything I’ve said. As I mentioned before, I did a lot of research on the DAN doctor we see before visiting her. It wasn’t from her that I became concerned about heavy metals; it was from the Andy Cutler crowd (none of whom have received a dime from me). When we left the DAN doc’s office after the first visit, I told my husband that I didn’t really care for her, but that if she was able to help our son, I’d get past it. I was definitely not without my doubts that she could do much more for him than we were already doing. Again, I wanted to be able to look back in 10 years with no regrets or concerns that we hadn’t done everything we could for Aidan, so we pursued it anyway.

    I was the one who brought up chelation to the DAN! doc, not the other way around. She answered that she wanted to deal with my son’s gut issues before thinking about anything else, so we waited fairly patiently for about three months before I finally pushed her into prescribing the TD-DMSA. She actually talked a little gloom and doom about us starting before his gut was ready, warning us that we might see a regression, but I told her that after close to 10 months on the GFCF diet and myriad supplements, I didn’t think he’d be any better off waiting another month, or two, or five, etc. As I mentioned before, he smeared feces for the first time in months and months on the second day of chelation, and I thought, “Oh, crap…what have I done?” At the same time, though, he was also saying things we had never heard before like, “Follow me, Daddy.”

    You said:
    Since it’s very rare for a disastified customer to go on a Yayhoo! groupee list and complain (because they’re pretty sure it was their fault for not doing it right and their kid is just a “tough nut” non-responder anyway), the voices of the satisfied and the not unhappy are the ones you hear on the groupee lists.

    So you listen in frequently, eh? Funny, ’cause I’ve heard a lot of complaints. I’ve heard people write scathing comments about this doc or that and this procedure or that. They say, “Oh, HBOT was horrible for my son,” or “I did a year of TD-DMSA and we saw nothing from it.” They also report the good, too, but I’d say off the top that there are probably fewer “yippee” type posts than posts asking questions or bemoaning something that’s going on with their child.

    You said:
    You, Karen [sic] are likely one of those blessings to the quacks.

    I dunno. I think I’m the one who’s pretty blessed. My beautiful child is getting healthy. He now laughs more than he cries. Talks more than he grunts or makes unintelligible sounds. Sings songs and dances more than he stims. Plays with his brother more than he lines us items. I heard recently that there’s now a 6 month wait to get in to see the DAN doc that we see. She doesn’t need me to toot her horn. The kids she’s helped to heal (including her own) are all promotion she’ll ever need.

    Kev–You said:
    I think you seriously need to review your contributions to this discussion. You are either very forgetful or very dishonest.

    I am neither…well, forgetful on occasion, but not in regards to any postings I’ve made herein.

    To hopefully clear up the whole Rett issue once and for all:

    I made mention to Vandy research that shows genetic vulnerability+environmental insult=ASD (that’s the quick and dirty description at least). You said the researchers were quacks and brought up Rett as your supposedly convincing proof that they were wrong (though, as I said later, I suspect they were not including Rett in their analysis). You said: “Please explain to me what the environmental aspect of Rett is.” I said that I had not done research on that, or in other words, I have not done research on there being an environmental aspect to Rett. Somehow you took my comment to mean that I therefore knew nothing about Rett, which is completely wrong (and was a crazy leap, hence the crack about crack–though I meant it as a joke, hence the winky face).

    When we first started getting concerned about my son, I did all sorts of research on ASDs, including Rett. I first went to the DSM-IV and from there proceeded to tons of sites with voluminous amounts of information, most of which I waded through, including a lot of information on Rett. Admittedly I didn’t spend as much time on the information about Rett as I did on autism/PDD-NOS, but it only takes a few minutes’ worth of reading to discover the incredibly high preponderance of girls versus boys with Rett and the genetic basis for it.

    So does that now clear it up for you? Because I would really like for you to point out all the so-called shifting that I have done as you so rudely (and completely inaccurately) accuse:

    Your answers to all questions are replete with this kind of shifting.

    You said:
    You also seem to find it very very difficult to answer direct questions about your anecdotal claims.

    Excuse me? To what questions are you referring? I have answered every question asked of me honestly and without hesitation.

    You said:
    It is now clear that your son is undergoing therapies beside that which you think are ‘curing’ him of his autism. Why do you do them if chelation will ‘recover/cure/whatever’ him.

    You seem to be inferring that I have somehow hidden the fact that in addition to biomed treatments I have also provided traditional forms of therapy for my child. The reality is that *I* am the one who brought it up! I do believe that chelation will be the final biomed treatment protocol that will recover/heal/cure (whatever word you like) my child, but I also know that during the time that my child was not being treated for his biological problems, he fell behind his peers. Traditional methods are good for helping a kid catch up more quickly, though they are far less effective when the child is unhealthy. We used ABA (8 to 10 hrs per week) to help my child catch up on skills he normally would have acquired sooner, and as I said, he still receives a miniscule amount of ST per week (what we get “free” from the local school district–I don’t turn down free therapy).

    If I had it to do all over again, I would have trusted the DAN doc when she said at the first appointment to quit wasting our money on ABA, and just save up some money for when we’re at the end of the path and it’s time for a Berard type program. She said biomed could take care of everything except the very last bit of language issues. As I said, I’m a skeptic (despite what others on this list would like to believe), so we didn’t go with what she said. Did we enjoy cleaning out retirement monies to spend the $1000+ dollars per month on ABA? Do we enjoy restricting the foods my son can have? Do we enjoy having to put vitamins and minerals in my son’s juice cup every day? Do we enjoy giving him two squirts of an MB-12 nasal spray each night? Do we enjoy rubbing a stinky cream (you’re right about that–it does stink) on my son for three days straight every other weekend? Do we enjoy the derision of people like yourselves, most of whom have never tried the methods we’re using? I’ll let you guess the answer to all of those questions. Now guess the answer to this one: Do we enjoy watching our child recover?

    Kathy

    P.S. to Kev: As I mentioned in a prior post, your supposed research on a ‘recovery/cure’ rate is so unscientific that I’m sure you realize it’s hardly worth continuing unless you decide to do a true study; that being said, though, here’s another dataset for you to consider: http://paleodiet.com/autism/cadelet.txt

    You know, I already mentioned that it will probably be difficult (though not impossible) to find parents who have SOLELY used biomed to recover their kids (and it seems like you’re saying we’re damned if we do (use biomed) and now we’re all of a sudden damned if we use traditional methods as well, eh? Like you think that somehow shows we have no confidence in the biomed methods used? Perhaps a more feasible study would be to have control and test groups of kids with matched pairs of rough equivalency in terms of the level they started out and the type and amount of traditional therapy received. The only difference between the groups would be that the test group received biomed in addition to the traditional therapy. And my suggestion for the type of biomed would be chelation, since that seems to be the big-ticket item talked about here. It would probably have to be a longitudinal study if you wanted to be able to prove that kids were as they were at any given time rather than just trusting the parents’ words for it, but wow, now THAT would be a study, huh?

  38. Jonathan March 11, 2007 at 17:48 #

    Hello Kathy,

    I have some thoughts for you, they will follow below.

    “I’m a skeptic (despite what others on this list would like to believe), so we didn’t go with what she said.”

    It is good to meet a fellow skeptic, there are too few of us. But, at the same time you make certain arguments that are not associated with scientific skepticism.

    For example, you wrote: “So on the flipside, you cannot cite any science that proves that it DOESN’T work, can you?”

    This is a called the argument from ignorance and it is considered a logical error. The burden of proof, in science and logic, is always on the positive.

    “Did we enjoy cleaning out retirement monies to spend the $1000+ dollars per month on ABA? Do we enjoy restricting the foods my son can have……”

    I am sure you do not. You will however, do all these things, if you percieve that they benefot your child. Unfortunately your efforts and your certainty, do not prove a cause and effect.

    “Do we enjoy the derision of people like yourselves, most of whom have never tried the methods we’re using?”

    I do not offer you derision. But I am critical of biomed. These are not the same things.

    Also, it is sometimes said, “do not knock it, before you try it” an attitude that I seems to encapsulate your previous statement. But this philosophy is most unusual in a skeptic. A good skeptic knows that things need to be put to the test, and they must be open minded enough, to realize they could be wrong (and sometimes they are). But a good skeptic knows that they personally could be wrong in their perception, they seek out and encourage the best controlled testing possible. A good skeptic self-applies their critical reasoning.

    The data set you cite from Dr. Cade is of a sort known as a pre-experimental design. It does not control for any of the seven threats to internal validity and the nature of outcome measures are not specified. Moreover it seems to run counter to the true experimental results of Elder et al. (2006) who found no association.

  39. Friend in California March 12, 2007 at 05:05 #

    Kathy –
    My first question related to whether you believed the rapid changes you saw in your son’s behavior were strictly due to chelation. While dodging the direct question a bit, your answer was basically yes: “I don’t think many children go from being all the things I described … to being what my child is today after only a year of intervention.”
    And yet I have explained to you that my son is undergoing the same changes yours is. It is possible you simply disbelieve me, or it is also possible that you are unwilling to accomodate any possibilities that do not fit in to your preconceived notion of cause-treatment-cure paradigm.

    My second question relates to cause, specifically mercury. You stated that you do believe your son’s autism has resulted from mercury toxicity. This belief amazes me. Despitr all evidence to the contrary you believe a hypothesis which remains absolutely unproven despite all efforts stretching back for a decade? And how does this jibe with your self-proclamation of being a skeptic? What’s more, I am surprised you do not see that chelation is bad advice predicated on bad science. I know you have done testing to measure mercury levels of your son, but the validity of those tests is highly questionable (see Ms. Clark’s comments above). For an overview of what a real mercury poisoning circumstance looks like, check out Not Mercury’s latest post at: http://notmercury.blogspot.com/
    Your skeptical mind may find fault with what Not Mercury is saying – mine does not.
    Being the skeptic that you are, I would tend to believe that you would lean towards the peer-reviewed research available on this topic. Following are some lines of text cut-and-pasted directly from the “summary section of various research articles:
    -“Mercury poisoning should be diagnosed only with validated methods. There is no evidence to support the association between mercury poisoning and autism.”
    -“The most striking finding is the almost total lack of convincing evidence for efficacy” (Note from me: this was a study on DMPS chelation)
    “Although urinary excretion could be enhanced during chelation therapy, Hg deposits in organs resulted in negligible elimination of mercury compared to the exposed dose.”
    “Neither DMPS nor DMSA is effective in quantitative elimination of elemental mercury.”

    My third question had to do with potential harm from chelation therapy, which apparently is not a concern for you (although, commendably, you are giving your son supplements to replace the minerals lost through chelation).
    With the same intent as above, here are a few cut-and-pastes from some valid research:
    “Adverse effects were rare but those of note included a few cases of hypocalcemia and a single case of increased creatinine in a patient.”
    “From 2003 to 2005, deaths of 3 individuals as a result of cardiac arrest caused by hypocalcemia during chelation therapy were reported to the Centers for Disease Control and Prevention. Two were children.”
    “From our experience and review of the literature, we suggest that health care providers who are unfamiliar with chelation consult an expert before undertaking treatment.”
    Is your DAN! doc an expert, Kathy? It’s worth looking into…

    Lastly, I asked if:
    “Do you believe that, statistically, a 3-5 year old child who exhibits autistic behaviors has a lesser chance of self-reporting “happiness” at any future point in their life than a typical 3-5 year old? All other conditions being equal?”
    Your answer (in part):
    “my answer is that I don’t know.”
    Then why, Kathy, are you doing this? If the goal is not necessarily to provide thebest chance at happiness for your child, then why?
    You also answered:
    “I’ve read accounts (and spoken with) autistic adults who are very happy with their lives and others who were extremely miserable and just waiting (and literally praying) for death.”
    For those you have spoken with who are literally praying for death, did you receommend chelation therapy? If not, why not? If so, how did they react?

    Let me reiterate that no one here is anything but happy that your son is thriving and that there is harmony in your family – these are wonderful things. But I hope you also can acknowledge that there are numerous apects to the whole cause/treatment/result issue and that you do not hold the monopoly on success and happiness.
    Remember, Kathy, you are the one who entered this discussion claiming that you “weep for our children” and accusing us of guilt over not having done everything we can do to assure that our children “get healthy”. You have very clearly intended to take the moral high ground. Guess what? There are many, many autistic adults who are reading this exchange and I don;t think too many of them would agree with you. And guess what else? Your son, too, will be an autistic adult in about 20 years. Wouldn’t it be interesting to ask – directly – some autistic adults how they feel about your stance in this issue?
    Steve

  40. anonimouse March 12, 2007 at 13:40 #

    I think if Kathy was a true skeptic, she would hold fast to the mantra “if it seems too good to be true, it probably is”.

    I used to think my first child could only drink from a certain bottle and eat a certain brand of baby food. I know that rationally it wasn’t true, but because she was happier and eating (when she wasn’t before) I was scared to do anything else. I didn’t want to simply chalk it up to the fickle moods of a baby.

  41. Brian Deer March 12, 2007 at 18:30 #

    The late Bernard Rimland used to publish a table (maybe his people still do) setting out every last treatment, product, remedy, call them what you will, from secretin to B12, to chelation, blah blah…

    Basically it showed that everything “works”. Overall, about a third of parents would say their child improved, pretty much whatever he/she was given.

    Presumaby, Rimland’s, Bradstreet’s, Kessick’s and the others’ children were not among them.

    Funny that, innit?

  42. Kathy N March 12, 2007 at 22:11 #

    I’m under the pressure of a work deadline right now, so don’t have time to respond in my usual verbose manner. 🙂

    I did skim the last set of responses, though, and wanted to mention to Brian that, yes, the ARI still posts the table: http://www.autismwebsite.com/ari/treatment/form34q.htm

    If you’ll just check the link above, I think you’ll agree that you might want to reconsider your “pretty much everything works” and “a third of parents say their child improved” comments (oh, and be sure to check out the results for chelation). I also think your last statement is pretty freakin’ crass:

    Presumaby [sic], Rimland’s, Bradstreet’s, Kessick’s and the others’ children were not among them.
    Funny that, innit?

    I’d rather be me weeping and concerned about whether children are getting treatments that might help them (regardless of whether you believe they are beneficial or not), than be you with your snide, rub-their-nose-in-it attitude for people whose children might not have recovered. I’m not familiar with the Kessick case, and have only heard through word-of-mouth that Dr. Bradstreet’s son is doing very well, but your reference to Dr. Rimland’s son is completely out of line (as well you know, I’m guessing). Mark was born long before most of the current biomed treatments were being used and as with all other interventions, the older a child gets, typically the less effective the intervention.

    Kathy

  43. Friend in California March 12, 2007 at 22:33 #

    For Kathy and Brian –
    That table is quite useless for any purpose other than propaganda (would PR be a better term here?) for ARI.
    As a matter of fact, this is precisely the kind of thing that can be held up as the epitome of misinformation that drives the biomed train.
    For example – how many parents who completed the survey answered yes to more than one category at the same time? How much would that skew the results? There is no standard of “Got better” or Got Worse” – it is completely subjective. This information does not control for results from lack of biomedical intervention. It also does not control for Placebo effect. The subjects of the survey are those who have already decided that biomedical treatments will most likely be of benefit, hence their presence at ARI. This places tremendous bias on their responses. I sincerely hope nobody is holding this up as evidence that this stuff does, or does not, work.

  44. Kev March 12, 2007 at 22:56 #

    FiC – you’re quite right. The ARI results are exactly what you expect to find when you ask a bunch of hardcore biomed fans what they’re opinion of hardcore biomed is.

    Kathy – any sign of these thousands of cured kids yet?

  45. clone3g March 12, 2007 at 23:53 #

    “The truth will come out over time,” J.B. Handley said. “The best way it could come out is with thousands of recovered children. That’s our dream.”

  46. Seth L March 13, 2007 at 02:34 #

    Well, hello everyone! I see the debate remains lively and passionate. That is a good thing. Neither side of this debate is going to change their opinion. So may I just suggest, again, that each side avoid accusing the other of doing something as a parent that is irresponsible or dangerous even. The non-biomeds do it and the bio-meds do it. Nobody likes having their parenting challenged or insulted. If either side feels like the other lacks education or open-mindedness, just share information rather than attacks. Oh well, I’ve turned into a gooey mediator. Who would have thought?

  47. Friend in California March 13, 2007 at 04:52 #

    Seth and I have had a very productive conversation on the issues. As he commented, we have basically agreed to disagree, and are both comfortable with that. On an individual basis, I think most of us would agree that our basic human nature, and the inevitable flaws that come with it, trumps any stance we take on this issue.
    I also reserve my right to take and hold my position, as I feel the weight of this discussion presses on more than just my own family.
    Kathy, I hope you have learned some valuable lessons here. Ater launching your initial attack, and doing your best to continue insulting (while trying to seem “nice” by inserting the occasional smiley face) not only the generous host of this site, but the majority of its visitors, I hope you see that there are multiple facets to this issue, and that you are not the resident expert.
    And, to highlight the remaining acrimony that permeates the ongoing debate, we have Mr. Handley commenting on another post that Kev is a “prick”. Forget about the fact that Kev, at the outset, acted in the best interests of his daughter by NOT placing her in the public arena and staking his own reputation on her complex set of behaviors. Kev has consistently, and I dare anyone to take the opposing stance to this argument, kept his own family’s best interests in mind while sticking his own neck out to fight for what he feels is in the best interests of all of ours.
    So, as I see it, I am walking away from this discussion with a friend who agrees with me and one who does not on the topic of biomed, and I feel like I, and my son, are the winners.
    Steve

  48. Prometheus March 14, 2007 at 22:49 #

    In reference to the table of “biomedical interventions” on the ARI website, it is still there: ( http://www.autismwebsite.com/ari/treatment/form34q.htm ).

    I have a couple of additional “issues” with it, besides the methodological ones raised by Friend in California:

    [1] The ratio of “got better/got worse” rather completely ignores the often huge percentage who received “no effect”. A better comparison, to judge effectiveness, would be to compare the “got better” group with the sum of “got worse” and “no effect”.

    [2] The overall reliability of the survey can be judged by the fact that intravenous secretin – which has been shown to be no better than placebo – still shows 48% in the “got better” category (44% “no change”, 7% “got worse”). Of course, this entry is followed by the rating for transdermal secretin (which has not been shown to be absorbed), which is 41% “got better”, 49% “no change” and 10% “got worse”.

    In fact, we could take the combined secretin figures and calculate what the expected course of untreated autism (since secretin is no better than placebo) would be:

    “got better” – 45%
    “no change” – 47%
    “got worse” – 8%

    At least there is some useful information that can be gleaned from that table.

    Prometheus

  49. Kev March 15, 2007 at 07:13 #

    _”I would be more than happy to provide you with scads of links of children who were recovered with biomed intervention”_

    You keep saying you _can_ but you keep failing to _do_ it. Its a really simple thing this. You stated, no, you insisted that chelation will cure your son. He will go from autistic to non-autistic. You further said there were thousands of kids who were already cured.

    So – I’m asking you to _back that up_. Stop telling me you _can_ do it and start _doing_ it. No more flip-flopping, no more wriggling.

  50. anonimouse March 15, 2007 at 13:43 #

    And when we mean “links of recovered kids” we wants links of kids that were given an ASD diagnosis by a reputable medical professional, used biomedical interventions as their primary treatment mechanism, and now have been diagnosed by a reputable medical professional as no longer being on the spectrum. And furthermore, provide a timline for said events and what kinds of treatments were used. I’d ask for medical records as proof but that’s overkill.

    I guess I’m wondering why nobody has bothered to publish a single case series (much less a trial) of biomedical success in a medical journal. I mean, imagine the fame and success that would await a doctor that could publish a legitimate study showing a biomedical intervention (or inteventions) successfully cured autism. It couldn’t be because those treatments don’t work, could it?

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