I just noticed there are 3 DAN doctors at 77 Froehlich Farms Blvd. Woodbury, NY. But that is out in Long Island which is really a pain to get to from upstate.
Hmm, this one is closest to the family: Sherry Rogers, M.D. 2800 W. Genesee Street Syracuse, NY 13219 ph: 315-488-2856
^I take that back; it's probably a longer drive and from Google street view there is no sign and it doesn't look like much is happening there.
The OP posted this link: http://fightingpandas1.blogspot.com/2012/10/parents-lose-custody-in-battle-over_8.html From there you get these two links: http://pandasnetwork.org http://www.latitudes.org/forums/index.php?showforum=17 The second link has this welcome message: From corporationwiki: Checking out the most unique name, Marshall Zaslove. He's an older psychiatrist in Napa into Guru worship, BMW race cars, and attractive women: http://www.facebook.com/marshall.zaslove These themes remind me of a cult popular in the northwest led by Bhagwan Shree Rajneesh. Neither here nor there, but somewhat suggests that different cults may make common cause on certain issues and may share their intelligence and litigation resources (DAN has Scientology and Moonie links http://leftbrainrightbrain.co.uk/2006/11/07/autism-scientology-and-the-moonies/).
Do we know that her parents took her to a DAN doctor? Or is this just speculation? (I must confess to not having read every word of this thread, so my apologies if this information is above). aren't we all!
It is speculation, but a reasonable speculation based upon the fact that DAN is the primary group of doctors promoting PANDAS as a cause for psychiatric conditions such as OCD, autism, ADHD, etc. Personally I find it weird that so many people think that it's not psychiatry if it's a bug or a carpet cleaner rather than some other poorly understood process affecting the brain.
If you go to the PANDAS site message board you will see people asking each other for which DAN doctors to go see. Here's an example: http://www.latitudes.org/forums/index.php?showtopic=8058 Kind of like Narconon, DAN is rebranding as some of these doctors are getting in trouble for harming patients. A DAN doctor killed one kid with chelation and another DAN doctor, Dr. Mark Geier, lost his license in Maryland for using Lupron to chemically castrate autistic boys. He actually started a franchise of several Lupron clinics across the country before the board spanked him. More here: http://en.wikipedia.org/wiki/Mark_Geier
I wonder if Sherry Rogers is related to Sheila Rogers who is the director of ACN as listed in the post above.
Yeah, well, we don't know if that's what happened in this case. It's not an unreasonable speculation, but there's no evidence for it right now. Perhaps PandasMom or someone else involved can give us the name of the doctor(s) who made the initial diagnonis with which the hospital doctors disagreed, and we can check out if those doctor(s) are normal doctors or woo-doctors. I agree with you - I think the cause is the stigma attached to mental illness. I think it would be easier to accept mental illness in the family if one were able to pinpoint a single physical cause (I say this as someone with mental illness in the family!). As in, not "my relative is nuts and I'm worried I'm partly to blame" but "my relative is nuts because of that darn poison/bacterium/cause! If it hadn't been for that specific cause, they'd be fine! Therefore it's not my fault and I needn't feel guilty."
Here is a book by Sheila Rogers, the woman who runs the PANDAS message board at ACN: On the cover you see an endorsement by Marshall O. Zaslove, MD, vice president of the "Association for Comprehensive Neurotherapy, Inc." Sheila Rogers serves as director and Jonathan Kruger serves as secretary and treasurer. Sheila Rogers is the daughter of Sherry Rogers, probably the same Sherry Rogers who writes the anti-medicine books.
Pandas Mom has been working her day job. With regard to the doctors. I think one was a pediatrician in the area and there was a second doctor in Vermont. I have no information further on the latter. There is a split in the Pandas world. From what I can tell the majority even of those on the ACN forum, which is the only forum of any size on Pandas, strictly follow conventional medicine. Others (a minority I would judge) do a bunch of homeopathic stuff I can't make any sense of in addition to antibiotic/ IVIG treatment and talk about going to naturopaths or DAN doctors. The unspoken protocol on the board is to take a big tent approach to what people do for supplemental treatment. The strictly conventional people use SSRIs or anti-psychotics if needed, while the alternative types do their homeopathy and both sides are polite to the other. These are parents dealing with very challenging children and accompanying family chaos and there is a definite vibe that "whatever works for you is ok." Many from both groups have their kids do Exposure Response Prevention therapy--definitely a psychiatric treatment. They flock especially to a program run by the psychiatry department of the University of southern Florida. Everyone on the forum who can afford it has gone to the NIMH (treatment free but hard to get into) or one of the major Pandas doctors, all of whom are conventional doctors and are associated with mainstream instituions like Mass General, NYU, Yale, Georgetown, University of Southern Florida, University of Michigan, and Stanford. This requires travel, hence expense for those not living near a specialist. These doctors, who are neurologists, immunologists, and, yes, psychiatrists, are quite scrupulous about sticking strictly to mainstream medicine. They do not want Pandas to become a wacky fad diagnosis because it would undermine their ability to treat children who are in fact very sick. These doctors will not entertain Lyme unless a child is CDC positive (as was Elizabeth Wray). There are definitely some on the ACN forum who push chronic Lyme and other tick-borne disorders as a co-infection and say one should really check with a LLMD and the only worthwhile lab test is a certain place in CA. Usually the replies are polite, but I've seen at least one poster say, "No offense, but [on this particular issue] I just don't want to hear about Lyme." There are a number in the community who had a child in the mental health system for a number of years with no improvement. There were not anti-psychiatry, nor were they in denial about their child's mental health problems, but they just weren't seeing rsults for their kids and sometimes weren't even getting real diagnoses from puzzled doctors who finally resorted to serial medications in the hopes one would stick. Many of these parents just fall into a Pandas diagnosis--maybe one the many therapists/psychiatrists they have seen in their attempt to get their child better suggests it, or a sibling gets a very classic Pandas case and a pediatrician spots it and refers to a specialist, who then hears about the other child and suggests he or she be evaluated. So are their Pandas parents who are into naturopathy etc.? Definitely, yes. They are many parents who are into this without having a Pandas child. Are they all this way? Definitely not--they are a distinct minority as far as I can tell. Are Pandas parents anti-psychiatry? As far as I have found they are not, even the more alternative types. Many have bad experiences with their kids on psych meds--Pandas kids are more senstivie to their effects so chances of a bad experience are greater. Others have tried years of psych meds with no improvement. So they are not anti-psych meds, just against them as the only option offered despite demonstrated ineffectiveness while being denied a course of simple antibiotics that could take care of the problem.
I sympathize with parents who feel they must try anything, even if there are only anecdotes which are pretty bad evidence (you take a pill; you get better, but you won't know what might have happened if you didn't take the pill). If the unproven treatment is reasonably safe, I don't object. But there has to be an evidential standard for public health policy. When you start advertising to the general pubic that you have some treatment with some benefit, you have to back that up with evidence, real evidence, not just anecdotes. Doctors once were quite free with their criticism. Quackery was called exactly that, openly, and I think that helped keep the moonbats out of the teaching hospitals. But times have changed. There are moonbats --people who don't seem to care about proper controls-- among the "conventional" doctors. Some of their guano makes it into the best journals. So good luck, patients.
I agree. PM, thanks for your informative and interesting post. Not unreasonable then for the hospital doctors - presumably specialists in the field (?) - to feel that their diagnosis should take priority. Unless doctor B is also a specialist, I guess. Unfortunately, just because A doesn't help, it doesn't mean that B will help. http://en.wikipedia.org/wiki/Magical_thinking Unless there's evidence that the girl has PANDAS, and more evidence that antibiotics can cure (or alleviate) PANDAS, then giving her antibiotics (or indeed giving her any other drugs or treatment) would just be plain experimentation. Forgive me if there is such evidence in the thread above, I haven't had time to read all of it and all the references (day job!) Yeah. Having a seriously ill child must be terrible, I thank god Bob Xenu it's never happened in our family. In that situation I'm sure I'd be grasping at any straw that came along.
Pandas Mom may be a reasonable person. But the protest is not reasonable. The protesters are telling parents going into Boston Childrens that the doctors are not to be trusted. However, they are not providing the kind of evidence about the situation that parents would need to understand what happened, just as they have not provided evidence to us here on this forum. We see all the time how Scientology sets up nets for disgruntled people, then grooms the few who stay involved to fight battles that serve their interests. They did this when they went to war with the IRS, by setting up anti-tax organizations pretending to be mutual support and advocacy groups. Good people get suckered into these groups without understanding the full context and so they also get suckered into imprudent action. I think the mommy warrior groups like Generation Rescue, Thinking Mom's Revolution, Age of Autism, and the PANDAS network, are political personal armies in the same way the anti-tax groups were political personal armies. I see the same expert names associated with all these groups. I know some to be strongly against both vaccines and meds for kids, so I am guessing that is the agenda. Peel back the parents to the propaganda sources like Sheila and Shelly Rogers, Mercola and Mike Adams, and you get chiropractors mostly. So I'm guessing that Scientology has been working with the chiropractic community on this mostly covert operation to enturbulate the doctors. With any PR effort, you have to start with some position of agreement with the public. "Some doctors don't understand..." is an easy point of agreement. But step back and take a good look at the big picture before lending support to some politically motivated group.
I would like to know more about this big chiropractic picture of which you speak. It sounds quackish. I don't like the quacks.
Thought Leader # 2 in the PANDAS universe is apparently Jory Goodman, MD, aka "The Beverly Hills Psychiatrist," which is 10 points on the scam-o-tron right there. Sample of Dr. Goodman's writing below (scam-o-tron points in parentheses): tl;dr: I am blinding you with sciencey sounding test names that aren't worth doing. Are we sure this guy is actually a doctor and not simply a lookalike actor that stole the real doctor's identity?
^Oh I forgot to put in the points. Let me just say, eleventy. Not as many as an email from Nigeria, but more than car salesman.
Ok, we can start with Lynn Johnson's Facebook friend Robert Melillo. http://www.facebook.com/PANDASResourceNetwork http://www.facebook.com/robert.melillo.7 Here is another Carrick chiropractor interested in child mental health that is friends with Lynn Johnson:
Here is guy training chiropractors to be "neurologists," Ted (or Fred) Carrick: Wait, no it's this guy: He made a machine called a "GyroStim" which reminds me of that thing in the SuperPower building. http://www.ptsnorth.com/content/ind...t-thinking-dr-ted-carrick-on-concussions.html Dr. Carrick did not actually study "neurology," because you can't really master that subject in isolation from the rest of medicine, which you study in medical school. And you can't go to medical school until you study a bunch of basic science in college first.
You know I am starting to smell Raelians up there in the woods of Crazytowns NY. Perhaps it is the proximity to Montreal.
You're about 7 pages too late, but welcome back, WWP's been dull lately. Like. Incidentally, is a very interesting and rather thoughtful book which documents a case of collision between parents' beliefs and doctors' beliefs (where both parties are good people interested only in the welfare of the child). Recommended.
Dr. Novella is one of the good ones. I'm glad he took the time to comment on this PANDAS protest at Boston Children's Hospital. Hopefully some of those parents will read his article.
The PANDAS moms insist that BCH say, "PANDAS is real and we have seen it improve dramatically with antibiotics." They warn BCH doctors that they will be targeted to receive negative publicity and possibly complaints to the state board if they do not take a "pro-PANDAS" position. But what if BCH doctors have reviewed the medical literature and cannot in all honesty say exactly what the PANDAS moms want to hear? The ethos of science is not to fight like a politician. The cultural is moar, "This might be true or this other thing might be true." Drama, not so much. If you go to a large scientific meeting you will need to jack up on coffee and donuts to stay awake. I recommend sitting near the back near a wall outlet so you can charge your shit and play games while you listen. But I have ADD so YMMV. tl;dr: PANDA moms need understand that evidence (careful observations with controls, published and peer reviewed) is better than fighting. Also if you have to travel across the country to see the guru of disease X, then it's not science yet.
Just surfing stuff off the PANDA moms Facebook friends. This photo of some chiro poster reminds me of Hubbard: a PTS condition aka "illness" has three causes: toxins, trauma, or engrams. Everything else that doctors talk about is lies. View attachment 524c8ca421d8a227134a818ef2c66f11.png http://www.facebook.com/photo.php?fbid=1379548412608&set=t.1286262774&type=3&theater I think these mom groups focused on chronic Lyme, PANDAS, gut inflammation, candida, and detox, are herding efforts along a truth gradient, because they're all based upon the same premise about sensitive immune systems. If these problems all have the same root cause then gosh, that must mean... If only the kids did not live in a contaminated world. If only they had not been vaccinated and given pills as babies. If only they had auditing to clear their engrams and painful emotions. If only they had their subluxations removed by chiropractors regularly. Then the precious babbies would be having optimum health right nao.
This capture is to illustrate that there are two fights: one about content (kid has/no has PANDAS) and a far more important fight over process (let us MAKE them believe!).
Exactly. Parents are entitled to make complaints of course, even if they know them to be unfounded. But it seems a bit anti-social. I was just reaching for the pocorn, but there seems to be nothing going on there: http://en.wikipedia.org/wiki/Talk:PANDAS http://en.wikipedia.org/w/index.php?title=PANDAS&action=history
http://en.wikipedia.org/wiki/Talk:PANDAS/Sources (list of sources) looks quite interesting, and if I had a spare 5 hours I'd read them all...
Not being a teenage nerd type I hope you will entertain the thought that the word C-U-N-T by your good self, may be offensive to others so STFU and DIAF. Thank you for your consideration.
http://rogershospital.org/news/authors-visit-rogers-part-research-book-on-ocd-treatment There sure are a lot of "Rogers" in this story: 1. Sherie Rogers who runs the AVN message board 2. Shelly Anne Hammond Rogers, MD, age 69, of Syracuse NY, who writes moonbat books. 3. Robert J Rogers aka Robert H Rogers, age 67, also of Syracuse, who has three businesses: PRESTIGE PUBLISHING, AQUARIAN ASSET MANAGEMENT, LTD, and SAND KEY COMPANY 4. Rogers Hospital in WI which promotes Beth Alison Maloney's PANDAS book.
Oh hai all seeing eye! Earlier in this thread is some info linking Shelly, Sheila, and Robert Rogers. Don't know about the hospital, but its history reminds me of the Seventh Day Adventists' Battle Creek Sanitarium, run by the Kellogg family for many years until the Scientologists bought the place and renamed it Narconon Stone Hawk.
