Sometimes, in the course of blogging, I come across a story that I don't know what to make of. Sometimes, it's a quack or a crank taking a seemingly science-based position. Sometimes it's something out of the ordinary. Other times, it's a story that's just weird, such that I strongly suspect that something else is going on but can't prove it. So it was a few months ago when I came across the story of Alex Spourdalakis, a 14-year-old autistic boy who became a cause célèbre of the antivaccine crank blog Age of Autism.
I first noticed the story in early March when perusing AoA to see what the merry band of antivaccine propagandists was up to I came across a post by Lisa Goes entitled Day 19: Chicago Hospital Locks Down Autistic Patient. In the post was a shocking picture of a large 14-year-old boy in a a hospital bed in four point restraints. He was naked, except for a sheet covering his genitals. A huge gash was torn in the bedsheet, revealing the black vinyl of the hospital bed beneath. The boy's name, we were informed, was Alex Spourdalakis. Further down in the post was another, equally shocking, picture of Alex that, according to Goes, showed severe dermatitis on Alex's back due to the hospital sheets. The photos shocked me for two reasons. First, if the story was as advertised (something to be doubted always about anything posted to AoA), for once I thought that I might be agreeing with Goes and thinking that AoA was doing a good thing. Second, however, I was extremely disturbed by the publication of such revealing photos of the boy. Undoubtedly, Alex's mother must have given permission. What kind of mother posts pictures like that of her son for all the world to see? Then there appeared a Facebook page, Help Support Alex Spourdalakis, which pled for readers to help the Spourdalakis family.
As I said, something didn't seem right.
Now I know that something definitely wasn't right, but I still can't yet figure out what was wrong at that time three months ago. What is wrong now is that over the weekend Alex was murdered by his mother and caregiver, stabbed to death, in fact. The murder was carefully premeditated and truly gruesome:
Convinced that Alex Spourdalakis’ severe autism was growing worse, his mother and caregiver allegedly planned for at least a week to kill the River Grove teenager and themselves.
But the alleged murder plot initially went awry last weekend when the stocky 14-year-old didn’t succumb to an overdose of his prescription medications.
After waiting for several hours, Dorothy Spourdalakis, fatally stabbed her 225-pound son four times with a kitchen knife, then cut his wrist so deeply she nearly severed his hand, Cook County prosecutors said Wednesday.
His caregiver, Jolanta Agata Skrodzka, later stabbed the family cat with the same knife, then washed the utensil and put it back in a butcher’s block, prosecutors said.
Their suicide pact never succeeded: Both women took drug overdoses, then locked themselves in the bedroom with the slain teenager.
They were found semi-conscious inside the second-floor apartment on Sunday afternoon when Alex’s father and uncle came to check on the teen, prosecutors said as the women appeared in court to face first-degree murder charges.
More details are described in this Chicago Tribune story about the murder. Dorothy Spourdalakis and Alex's caregiver Jolanta Agata Skrodzka had apparently discussed the plan to kill Alex using an overdose of prescription sleeping pills and explained why they did it in a letter. Apparently they killed the cat because they didn't want it to end up in a shelter after they committed suicide. We also learned that police had been to the house several times to assist with transporting Alex to doctors' appointments because "he was big and strong and unwilling to go to the doctor."
As I read articles and posts about Alex Spourdalakis, going back to March, I had the distinct impression that there was more going on that met the eye. Lisa Goes might have been right. That has to be conceded. But while I occasionally looked at stories about Alex on AoA, they just didn't seem to pass the "smell test" to me. Something, it seemed to me, was being left out. Neither did a lot of the claims seem entirely credible. At the very least, it was very clear that a highly biased, one-sided version of events was being presented. For instance, Goes claimed that Alex was kept in four point restraints 24 hours a day at two different hospitals, Gottleib Hospital and Loyola University Medical Center (LUMC), for 19 days:
According to her, at 14 years of age, Alex has a diagnosis of severe autism and cognitive impairment. He is non-verbal. In October of 2012, Alex began to suffer neurological events that prevented a healthy sleep cycle. He was awake for many hours at a time. Agitation and aggression ensued as a result of sleep deprivation. During this time, symptoms and behaviors that were indicative of severe gastrointestinal distress developed as well. A cycle of constipation, diarrhea and formed bowel movements surfaced and became a chronic problem. On February 16th at 5:00 am, with the assistance of police and paramedics, Dorothy took her inconsolable and highly-distressed non-verbal child to Gottlieb Hospital in Melrose Park, Illinois.
Because of Alex’s physical aggression, he was placed in locked restraints. At that time, Dorothy did not know the ER would be their home for the next several days, as Alex lay naked, in locked restraints, suffering bouts of violent vomiting, severe constipation and diarrhea. Neither she nor Alex bathed for the next 13 days while hospital staff and administrators attempted to devise a plan to care for Alex. “He was given Colace for his constipation and sometimes it would take security staff and nurses more than 15 minutes to arrive to help unshackle him so he could use the bathroom,” Dorothy explained. “Alex would scream as best he could when he knew he was going to have a vomiting episode, but security took several minutes to respond so Alex would lay in his own vomit, waiting to be released by a representative of security. He would be wiped down and returned to the same restraints.”
Sure, it was possible that the boy was being abused so horribly, first at Gottleib Hospital and then at LUMC, but it seemed damned unlikely to me, although at the time I had no way of refuting or confirming the increasingly lurid stories being posted at AoA about Alex. Still, I knew that tere are very strict laws these days about patient restraint. The last time I ever had to order four point restraints was over 14 years ago, back when I moonlighted as a trauma attending in, yes, the Chicago area, the same metropolitan area where Alex lived and died. Before that I sometimes had to deal with the restraint of patients when as a resident I rotated on the trauma services at the hospitals where I trained. Sometimes patients with head injuries or severe intoxication would be violent and require restraint. There were always a strict protocol that we followed, even back then. My understanding is that the protocols have only gotten more strict. Restraining a patient, particularly a minor, is not something that is undertaken lightly, nor should it be. To believe the AoA account, we have to believe that a severely autistic teenaged boy would be kept in the emergency room for several days (also very, very unlikely) and put in restraints in an abusive fashion at not just one but two different hospitals, continuing after Alex was transferred from Gottlieb Hospital to Loyola University Medical Center on February 28. Actually, it was three different hospitals, because later Alex was shown in four point restraints at Lutheran General Hospital during his last admission in May. More on that later.
Missing from these stories was a clear and cogent explanation of why Alex was ever admitted to Gottleib Hospital and then transferred to LUMC in the first place. It's mentioned in some places that Alex was "inconsolable, highly-distressed and suffering bouts of violent vomiting, severe constipation and diarrhea." I had to look for clues to explain it, and, I must admit, I still remain puzzled. Certainly, this Change.org petition demanding that LUMC provide what Ms. Spourdalakis considers to be "standard medical treatment," which to her included gastroenterology. Peppered through various reports were indications that Alex had multiple allergies and GI issues. Having observed a fair amount of autism quackery on the Internet, these terms were huge red flags to me that strongly suggested to me the possibility that Ms. Spourdalakis was heavily into "autism biomed." Another hint as to what might have been really going on comes from reports of a care plan conference on March 12. Allegedly (we only have one side of the story given that the hospital and doctors are bound by HIPAA privacy law not to discuss the case), if Ms. Spourdalakis failed to agree completely to the care plan Alex would be placed in the care of the Illinois Division of Family and Children Services (DFCS).
Elsewhere, I found references to demands that LUMC consult with an "Autism Medical Specialist to ensure Alex's dietary needs were met to ensure his food allergies and intolerance's were not "aggravating any underlying gastrointestinal or other medical conditions that may also cause adverse behaviors," which sounds suspiciously like an autism biomed quack. In this post, Lisa Goes described a visit to LUMC with Jeanna Reed of Autism Is Medical, whose website if chock full of standard antivaccine and "autism biomed" tropes, such as a section on mitochondrial disorders, banners asking if autism is vaccine injury, and the like. It's actually a pretty bare-bones website with lots of bugs, but the intent is clear. AIM is antivaccine to the core, and we already know that Lisa Goes is antivaccine, given that she has been a regular at the (Not-So) Thinking Moms' Revolution. Indeed, in this very post, Lisa Goes unwittingly portrayed Jeanna Reed as ranting and haranguing Alex's doctors with pleas to read quack studies and claims that "many of these children present with bowel disease and mitochondrial dysfunction. He could have GERD, duodenitis, esophagitis, ulcers in the small intestines, colitis. How can we know if we don't test?" This was pure autism biomed rhetoric, leavened with the arrogance of ignorance. When one of the doctors referred to autism as a "mystery," Goes totally lost it, yelling, "No! No! It's not. It's a medical illness that causes bad behavior. All you have to do IS READ*!"
Based on what was in retrospect in plain sight on the antivaccine blogs, it's hard for me not to suspect that Dorothy Spourdalakis was subjecting Alex to "autism biomed" quackery, that she came to know Ms. Reed and thereby spread her story to the wider autism biomed movement at large. If my suspicions are ultimately revealed to be true, it would certainly explain a lot. Certainly, it would explain why Lisa Goes and AoA rallied to Alex's cause so enthusiastically. It would also explain why the hero of the autism biomed movement himself, the brave maverick doctor to rule all brave maverick doctors, Andrew Wakefield, visited Alex during Autism One and posted to YouTube on the Autism Media Channel a video making an appeal for Alex:
Note that I've saved this video, in case it goes down the ol' Internet memory hole. Also note that, in this incredibly creepy video (is it just me, or does Wakefield look creepier and creepier each time I see him?), Wakefield stated that Alex was scheduled to go to long term psychiatric care in 72 hours, as if that were the worst fate imaginable. He appealed for funds to allow Alex to be transferred to a facility where he would "get the care he needs." What isn't clear is why Alex was back in the hospital again. I say "back in the hospital" because on March 23 his mother published a post on AoA announcing that Alex was being discharged from LUMC. She thanked everyone at AoA, but she also revealed her antivaccine proclivities:
It is during times like this we as a family realize our full potential. We know no one will help us unless we help ourselves. The continued abuse, medical neglect, discrimination and ignorance have to stop. Vaccines have maimed too many already and there are many more to come. The CDC's latest stats confirm that. We are not going away, nor are we giving up. My son Alex is just one of millions of children and adults who no longer will be silenced.
We as a group have been deceived and lied to long enough. Our children have paid and are continuing to pay the ultimate price because of greed. The health care system has failed terribly. It is our responsibility to continue to bring about change.
Please continue to follow Alex on his journey toward better health. Allow us to be a part of your lives. Our strength will continue to come from everyone and anyone who would like to continue with us. Alex will hopefully get the medical testing he needs but was denied until now. So much needs to happen in order for us ensure his recovery and I still need so much help! Please continue to follow my team of helpers for updates and fundraising efforts. I cannot tell you how much I appreciate and value every single one of you who have gotten us to this place. Thank God for the internet and facebook!
To me, this was the strongest suggestive evidence that Ms. Spourdalakis had likely been subjecting Alex to autism biomed quackery. The language was pure "autism recovery" language. The antivaccine sentiment was there. So was the conspiracy mongering against conventional medicine and big pharma. In another story, I learned that another antivaccinationist and advocate of "autism biomed," Polly Tommey of the Autism Media Channel was involved, and Ms. Spourdalakis claimed that all Alex needed was "something simple, in the country, where he can run around, get the treatment that he needs so he can get better." For some reason, however, in May Alex was back in the hospital. When the new reports of Alex in the hospital started coming out, even AoA denizens and supporters wondered what had happened, for instance, on the Facebook post announcing Andrew Wakefield's appeal. The response from Jeanna Reed:
He's back in the hospital. The sad truth is that this will be what is left, the only path...unless we start to treat the MEDICAL conditions, provide an appropriate treatment plan and support the families while doing it. A VERY TALL ORDER but one that has to become the norm. Alex does NOT belong in a psychiatric facility. Sadly, this is the only option so many face when all of the above is not available. We did our very best to try and help them, and will continue to do what we can but it's not enough. We know so many who (if given the opportunity) could heal. So complicated...at the minimum PRAY for them and again realize this could be any one of our children.
I don't know about you, but if I had seen this at the time it was actually published instead of now, knowing the ultimate outcome, I would have still found the language ominous. In any case, not long after Wakefield's appeal, Alex was released from the hospital. Andrew Wakefield provided a statement to the Daily Mail after Alex's death explaining what happened and covering his ass in the process:
On Sunday May 26, members of the Autism Media Channel (AMC) went to the Lutheran General Hospital in Park Ridge, Illinois. There we visited the late Alex Spourdalakis, his mother Dorothy, and his Godmother. Alex was in four-point restraint and apparently refusing to eat or drink.
His mother was beyond exhaustion and despair. The main reason for her despair was the prospect of Alex being sent to a long-stay psychiatric hospital and heavily medicated with behavior-altering drugs drugs without any treatment of his underlying medical problems.
AMC issued an appeal on Alex’s behalf to protect him from this fate. We did not, at any stage, advocate for his release from the Lutheran General Hospital.
The following day Dorothy informed us that the hospital could find nowhere that would take Alex and that his insurance carrier had refused to pay for any further inpatient care at the Lutheran General Hospital.
It appears that, as a consequence, he was discharged from that hospital despite his precarious position and that of his carers. It is our opinion that Alex’s tragic death reflects the abject failings of a medical system that has no effective answer to the autism crisis.
I should point out right now that I used to work part time as a trauma attending at Lutheran General Hospital from 1997 to 1999. It was a fine hospital then, and I have no reason to think that anything's changed. Be that as it may, do I detect the stench of self-justification from Wakefield? He's desperately trying to cover his posterior, but his fetid flatus of blame deflection leaks out anyway. It's what he does. Wakefield's fame mongering and conspiracy mongering aside, however, if what he says is true, it does point out another aspect of this tragedy, namely support for parents with children with special needs.
That being said, what's also utterly despicable is the reaction of the denizens of AoA and other antivaccinationists to the news of the murder of Alex Spourdalakis. For instance, it is not infrequent to see antivaccinationists blame—of course!—vaccines for Alex's death, the apparent underlying "logic" being that if he hadn't become autistic because of vaccine injury then none of this would ever have happened. Such "logic" prevails in the comments of AoA posts about Alex's death, such as this one and this one. For instance:
Though I can't support the choice these two women made, it isn't hard to imagine the desperation and hopelessness they were engulfed in. To watch your precious child suffer for so many years and then endure what this past spring brought for them. They fought and fought the beast head on and felt the hatred against them. It isn't hard to imagine that they were exhausted. All of this happening in America no less.
No, these two women were, as far as I can tell, offered help but refused it because it was standard conventional therapy. From what I can tell from various blog and Internet articles, they appear to have subjected Alex to biomedical quackery and were unhappy that if Alex were transferred to a psychiatric hospital's long-term care ward he would no longer be able to receive "autism biomed" treatments. Time and investigation by the authorities will tell if that was the case. Whether that is what happened or not, I nonetheless reject the "logic" of such antivaccinationists such as it is, that only makes sense only if you accept the pseudoscience claiming that vaccines cause autism. While one can sympathize with a parent facing the task of caring for a severely autistic child who is very large, very strong, and very difficult to control, as Jo Ashline says, autism is not an excuse to kill your child, ever. As one blogger put it:
So one of the reasons I’m really pissed off is because of the usual [eye rolling] “Oh, he’s in heaven now”. My favorite is the thing that one of the groups that was intended to work towards getting Alex out of the hospital was a letter to Alex in heaven suggesting that he thank his mother for stabbing him in the chest. [Sarcastic eye rolling] “Thank you so much for brutalizing me, it’s my favorite”. Because now, you see, he’s in heaven, which I don’t think exists. And he doesn’t have autism.
Harsh? Yes. But it rings true. The entire narrative of the autism biomed movement is that autism "stole" the parents' "real child" away from them. Since the idea that vaccines cause autism is basically holy writ for the autism biomed movement, that means vaccines "stole" the real child away by making him autistic. Parents who try to "recover" that "real" child are thus viewed as heroic, rather than abusive, because they're willing to do whatever it takes to defeat the scourge of autism (and vaccines) in order to rescue the "real" child within. One can't help but wonder whether what was really happening was that DFCS was going to put Alex into a conventional long term care facility because his mother clearly couldn't handle him anymore and was treating him with autism boomed. Unfortunately, it appears from what we know right now that Alex's mother seems to have thought that he would be off dead than not being given access to what she viewed as "curative" treatments for autism. Events and evidence from the investigation and trial might prove that initial assessment incorrect, but for now it seems to fit with what we know. Was Alex collateral damage in this never-ending war by antivaccinationists against autism? Although what we know now suggests that this might be the case, we just don't know yet. We'll have to keep an eye on the results of the investigation into Alex's murder to find out.
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Yep, I see what you guys were saying about Greg. He knows enough to recognize a loaded question when he sees it, but thinks that while he can avoid answering them he gets to demand that other people answer his. Avoids all points contrary to his position and continues onwards with an oblivious, smug sense of self confidence.
Seriously, "is involved with autism"? CAUSES AUTISM, Greg. CAUSES. You are trying to argue for causes. Playing word games trying to cook up sentences that are intentionally vague and yet which seem to imply something else entirely doesn't impress me. The fact that you have to play word games says it all about the validity of your position.
I'm reminded of the Discovery Institute's "dissent from Darwin" list. The statement is worded so vaguely that someone that completely supports the theory of evolution could support it. And yet it's bandied about to attempt to show opposition to it.
These are not people you want to mimic, bravely bold sir Greg who ran away.
Chiming in momentarily to say...why in the world was Alex taken to a traditional hospital with the demand that he recieve biomed treatment, with the pleading chorus of biomend supporters and Wakefield? This smells like a grand attention-getting scheme, with Munchausen by proxy going terribly wrong. I only wish CPS could have removed him in time, they may have taken him to a safe place.
#493 But only *certain* parents, remember. Only the ones who agree with him--so less than 10%.
#497 And that's what made Cold Comfort Farm fun to watch: it was the girl from the city who fixed the lives of everybody on the farm.
Nomad, the Troll always ducks out, but unfortunately returns...because he gets the attention that he so desperately is craving.
Troll is playing games with us, as you already know, because he get his *jollies* by engaging posters on this blog. Best to just ignore him, deny him that attention and just post comments around him. :-)
@ Deee-Lurk: You've probably labeled the mother of Alex correctly. According to the statements from the police, she brought Alex to the hospital frequently which is one of the hallmarks of Munchaussen-By-Proxy Syndrome. Dorothy probably did some dicey *biomedical treatments* on her son to the point where he may have been experiencing some GI symptoms before the many prior hospitalizations. I'm guessing that she also lied to the admitting doctors...perhaps claiming bloody stools and/or spitting up bile, which may have prompted a complete upper and lower GI work-up including scoping.
Then we have the report of a CPS complaint/case opened January 2013 and closed as "unfounded", April, 2013. Was there another case opened? We don't know. Was CPS moving to take Alex under their auspices and place him in an alternative living arrangement? Dorothy did express a desire to move him "out of state" and she would accompany him there.
A. Feldspar: Thanks for the dissertation on flawed arguments. It should be preserved here as a useful link in replying to future flawed arguments. Can we have permission to repeat it, sort of along the lines of the creative commons license?
One remark about what has been going on here for more than 500 comments: A lot of internet discussion sites -- possibly most of them -- get some trolling from time to time. Some sites are adopted by trolls, who seem to settle down and irritate people as a life's work. What's worth considering is that we don't really know much about some of these trolls. They present what I call (for lack of a better term) a persona, by which I mean the personality conveyed by their words and thoughts and, in addition, a few facts about their background. These facts might be real, or they might not be. The personality conveyed in their typed comments might or might not resemble the real person functioning in his or her real world setting.
The persona who self identifies as Greg is kind of transparent in one particular way. He is a petty sadist. If you distill the essence of his remarks, they come down to repetition of assertions that have been refuted again and again. The typist who creates the Greg arguments is obviously aware of this, and just as obviously repeats the same tropes as a way of pushing peoples' buttons. Perhaps it is a source of fun to get all these serious minded people up in arms. I understand the response, since I have my own buttons of a different sort.
Perhaps this is just the dull NT in me coming to the fore, but let me try to convince the many of you who reply to the Greg that you will never get satisfaction from him, even though he is obviously capable of understanding your arguments. You can write novel length arguments pointing out that the experiences of parents are not convincing arguments for causality. The Greg will count the next 30 comments, or whatever his scoring system is, and then repeat himself.
A couple of months ago, I was challenged by a couple of the regulars here to respond to comments and assertions that were obviously of a trollish nature. The argument seems to be that if we don't do this, the non-participating readership (aka "lurkers") might fall for some of the troll arguments. I tend to reject this argument simply because there are already plenty of counter-arguments made here, such that people who are receptive to logical, factual arguments are not starved of them. Obviously there should be some minimal response to trollish commentary, but I don't think that going on for hundreds of comments is all that useful. I suspect that the non-participating readership don't follow these arguments all the way down, for the most part. If the owner of this site has data to the contrary, I will stand corrected.
One final comment: I think that the function of this site as an anti-antivaccination center is important and righteous. Unfortunately, this argument has gotten wrapped around the fallacious assertion that vaccines cause autism. I am certainly convinced that the massive weight of evidence has refuted that position, and yet the anti-vaccination people (and yes, petty sadists) continue to beat that dead horse. May I suggest that ultimately, the stronger refutation comes from a developing science that is beginning to explain autism (whether it is one condition or many) and that this science includes genetics as well as neuroanatomy and neurophysiology. I must also confess that these discussions have provoked my own curiosity, and I find studies such as those from the Cold Spring Harbor group headed by Wigler to be quite interesting:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3619976/
The study described in this paper suggests that there are something like 350 to 400 autism susceptibility genes (which would begin to explain why there is a spectrum of effect, since everybody including us NTs gets a different collection of variants of those genes), and that the genes associated with what is known as the fragile X protein (and is associated with the way synapses are built) are the major players. The study concentrates on what look to be de novo cases as opposed to inherited characteristics.
Anyway, I would like to suggest that science is progressing rapidly in this field, and we will have some fairly robust answers within a few years. At that point, there will still be the J McCarthys and the RFK Jrs, but their arguments will be that much weaker as a result.
@ Bob G. This particular troll came to us directly from Age of Autism and I have ignored him, because Troll craves attention and engagement.
We have had other persistent trolls who have a (temporary) home here on RI and who finally left the blog. If there are common behaviors amongst the trolls it is the desire to engage posters here, to try to derail the thread and to resort to personal insults. They are so perverse that when people post back at them, calling them out for their ignorance, they derive pleasure from those remarks...hence the admonition "don't feed the trolls".
Many of us post on other science blogs and *some of us* even venture on to the Ho-Po...more as a counterbalance to the anti-vaccine, anti-science posts that emanate from Age of Autism.
Anne Dachel has alerted her flying monkey squad to post on the blog that contains Dr. Offit's interview about his newly released book, "Do You Believe in Miracles"...and I just posted a rather lengthy comment back at her snide defamatory comment about Paul Offit.
http://www.newstalk.ie/Vitamins-are-good-for-you-right-
lilady,
I was amused to see the first sentence of that Newstalk article:
Unless that's an in-joke that has gone over my head, the phantom spellchecker has struck again. It has got me thinking about alliterative CAM treatments though; perhaps homeopathy for hayfever and herpes, acupuncture for aches and anxiety, MMS for Munchausen's by proxy, enemas for everything?
You’ve probably labeled the mother of Alex correctly. According to the statements from the police, she brought Alex to the hospital frequently
The overlap between anti-vax groups and Munchausen-by-proxy circles is substantial... Vactruth.com in particular seems to be a site where discussions soon veer off into defenses of this person or that, UNJUSTLY ACCUSED of MBP. Christina England comes to mind. Then there is the Morgellons circle of the Venn diagram.
I have a personal rule, which I adhere to stringently so as to minimize wasted time: I don't reply to trolls for the benefit of the trolls; I reply to trolls when by doing so I can show someone who otherwise might fall for their arguments where their arguments fall apart. Of course, some trolls are miserably disappointing on that scale, because they don't even grasp that among adults, arguments are "if you believe this fact and this fact, then you should see that between them they lead to this conclusion" and not "Does this bug you? Does this bug you? I'm not touching you!"
Feel free; I'd be pleased and honored.
Elsewhere in innernetzland, a conversation about the dehumanization of autistics via "support" and "witholding judgement" on the killers brought out some biomed parents defending their course of "treatment". Predictably, one had a child never seen by an actual doctor for alleged medical issues (mom doesn't trust them), but child is reported to be "allergic to everything" and biomed saved her. No bleach enemas in that case at least.....A lot of framing a false dilemna of the "terrible choice" Alex's mother faced -- if she let him go, he was sure to be drugged up in a psychiatric hospital and made into a zombie. I can't help but wonder if in fact he would have found a calm place without a bunch of drama (and crap treatment) that would have allowed him to feel safe, and with that, his aggression and agitation would have ceased. Not that every psych hospital is nirvana, but I can't believe every one is staffed by exclusively sadists desperately wanting to pour Rispedal down everyone's gullet.
For benefit of the perennial troll topic: "to reply or not to reply, that is the question" I propose that the Third Way is to not engage the troll but to merely reply with a link to a FAQ which addresses the claim(s) that the troll presents.
It's obviously convenient if the bloghost has some location where those points are neatly arranged for reference, but that's a lot to ask of Our Gracious Host despite the awesome computational abilities of plexiglass boxes.
On the other hand, a group effort at some convenient wiki would rapidly get enough of a FAQ page together that Our Host wouldn't have to do much to put it up -- as long as others do most of the work of maintaining it.
Agreed, in the abstract. I do prefer ferrets to skunks and wolverines, though.
Skunks are quite cute, though they do have a distinctive aroma.
@ Deee-Lurk: We only have limited (and skewed) information from Dorothy and her "helpers" about Alex's mental state.
IIRC, Dorothy complained that Alex became quite violent and did not sleep through the night ~ November, 2012 when he was prescribed psychiatric medication, and one of the "helpers" detailed what that medicine was; tranquilizers and Depakene (an anti-convulsant but also used as adjunct psychiatric medication). There are hospitals in Chicago, including this one, which provides a variety of inpatient, outpatient and longer term care, for children in need of psychiatric evaluation and medication titration:
http://www2.luriechildrens.org/ce/online/article.aspx?articleID=75
Some children have paradoxical reactions to sedating drugs:
http://www2.luriechildrens.org/ce/online/article.aspx?articleID=75
Ferrets too, though not quite as pungent. The smell rubs off on your clothes and skin if you let them shimmy up your sleeves and generally wander about inside your clothing, as they are wont to do. It would have been nice if someone had warned me of this before I learned it from experience.
Deelurk: I have a friend who has stayed in a psych ward at least twice. (Depression and assorted issues.) I visited her, and she seemed to be getting the help she needed; actually, the staff there was far more helpful than her family.
Some children have paradoxical reactions to sedating drugs
Don't know if it's a paradoxical reaction but I remember 2 occasions where I've been given very potent painkillers and stayed up all night.
First occasion was a teeth in serious pain since a few days and regular tylenol + caffeine + codeine weren't working so my father Gave me a dose of his demerol that night. Now you can imagine the dose of demerol given to a 275lbs strong man given to a weakling 135lbs myself....The next morning when my teeth was removed, my father and middle brother took me by both arms and slowly transferred to the car and back home, I slept 'till next morning with regular supervision from my mom.
the second occasion was at the hospital where I was injected morphine every 4 hours and didn't sleep that night. I landed at the hospital for a severe stomach bug who filled out my stomach & intestine with pressure. I was also injected some medication to bring down the pressure in the stomach.
In both case, I was painfree but only in the second case did I had the dosage adjusted to my weight.
Alain
Krebs: I assume you haven't tried ferret legging? I have and lived to tell the tale.
When I lived in S. Yorkshire, I saw this on TV
sheepmilker,
I would have done on that occasion, but for some reason I forget, in my youth I wore drainpipes so tight I doubt a mouse could have made its way up a leg. I was truly enchanted by the little creature until I noticed the smell - I believe it varies depending on a number of factors, all of which must have been in the ascendant that day. If I had been at home and could have easily washed and changed my clothes it wouldn't have been so bad, but I wasn't and I couldn't.
I've seen the Whiteley clip before - I think he was quite restrained considering. A mouse I rescued from the jaws of a cat did the same to me, and my instinctive reaction was to release its teeth from my finger and throw it back to the cat, which grabbed it and vanished, for which I felt a little guilty.
re: ferret legging: http://www.youtube.com/watch?v=CS_fCLKamfo
MOB: they don't write songs like that any more.
"I've never had one of those up there before..."
If enough of the regulars speak up to say they'll help populate it, I could be convinced to try setting up a wiki for this purpose.
sheepmilker - no, they most certainly don't. Pity, that.
If enough of the regulars speak up to say they’ll help populate it
I could contribute a neuroimaging section.
Alain
I did not even have to follow M O'B's link to start singing "I shall be the proud possessor of a kind of nasal zoo".
Lara, I've just really read your story at #366. You, milady, are AWESOME.
Antaeus:
If there's anything of mine you like, feel free to lift it.
An example: when I was a med student, we had to do a lumbar puncture on an uncooperative boy. He was about 10 or 11, and a pretty big kid, so the resident decided to sedate him with phenobarb (this was a LONG time ago). He got the sedative, we carried on with our rounds, and came back an hour later to do the procedure. There he was sitting up in his bed surrounded by shreds of paper from all of his comics that he had torn to pieces. He had taken the earphones from his TV and chewed them into plastic lumps. He stared at us with this look that said "Just try, bitches!" I think we abandoned the attempt.
I got started on this project last summer:
1. Hepatitis B vaccination of male neonates and autism diagnosis, NHIS 1997-2002. (2010)
I didn't get all the way through the list, of course. I do have a spreadsheet of Ginger Taylor's list, Lisa J Goes's list, and a similar list published at Gaia Health. There are about 75 papers.
Feel free to email me if you want the list.
Meanwhile, Alex's murderers "have pleaded the Fifth"...
http://abclocal.go.com/wls/story?section=news/local&id=9145025
@lilady - I see they are still quoting Polly Tommey's unverified claim that Dorothy was homeless and going from "motel to motel" while the police records show she was living in the same apartment the whole time. Here's hoping the hospital records will shed some light on the true cause of Alex's GI problems and the reasons for the multiple hospitalizations.
It sounds pretty arrogant to me if they think they where the only ones being able to take care of their child and their cat. If they can't take care of a living being, no-one else can, at least in their very twisted mind.
@Christine #530 Thanks, I don't feel awesome, I feel normal, sometimes less then normal. But I do have very strong opinions (thankfully which are backed up by more then just my own personal experiences) regarding vaccination, particularly in relation to autism.
Meanwhile, Alex’s murderers "have pleaded the Fifth"
Beg pardon? I didn't think defendants were called upon to testify at a preliminary hearing. I assume they were already arraigned.
Didn't they already confess?
Narad, do you have a link to any ongoing coverage? I'd be interested to follow it.
@Lawrence:
That's no reason not to keep your mouth shut in court.
@Calli:
I'm just checking out what Google pulls up from the local news outlets. I've previously opined that I've been wondering about ABC-7's take since their Ben Bradley popped up on one of the related FB pages. The latest Tribune bit is here. WGN-9 (which is TribCo) clarifies that this was the hearing at which they were formally charged, so again, I don't know what this taking-the-5th business is all about.
My first response when I read this was "What the hell?"
I try to hold my tongue (or my typing) until I can be more articulate than that. So here goes: "What the fucking hell?"
The obvious premeditation really destroys the "the were sooooo overwhelmed" defense, since if they had the planning abilities for what they did, they could instead have planned to turn the kid's care over to someone else. Some people upthread with strange priorities might argue that society can't afford it, but any society that can afford this many channels' worth of crappy cable TV can afford to supply at least the bare essentials, and the fact is, other options were offered. And even if we lived in some bare subsistence society where we couldn't pass the hat to help each other with the situations that are too big to handle alone, if we really had to treat the "unproductive" like rabid dogs, it is not fucking acceptable to repeatedly stab a rabid dog either.
There I go being more articulate again.
My only comfort is that every direction we look, with equipment that can see far enough, we find crowds of galaxies, each with uncountable star systems, so that it is statistical near-inevitability that some actually intelligent species out there is better at life than us.
I'm not sure, the people upthread really argued that society can't afford taking care of vunerable people. The basic question is mainly whether society is willing to afford all care. It is easy to say if society can afford crappy cable TV, they should be able to afford good care for all people. Yes, of course, they should be able to afford this, but the basic question is how to collect the money for this care. With the money one family spends on crappy cable TV, one can't pay for the care of one person in an institution. So in the end, everyone should pay for the care of all people in institutions. And that is where the problem is. If people have to chose, between spending money on crappy cable TV, or anything else one might see as being unimportant, or spending money the wrong way, for themselves, or spending the same amount of money to take care of someonethey don't know, never haver seen and haven't any relation to, I'm not that sure, they really want to give away the money, without getting something in return. Yes, they may be willing to give a small part of their money, but I don't know if this would be enough.
But this is a completely different discussion and it is completely beside the subject about some twisted people who think that they are the only ones able to care for a living being and if they aren't able to do this, no-one else can, so the living being has to die.
My only comfort is that every direction we look, with equipment that can see far enough, we find crowds of galaxies, each with uncountable star systems
And all of them fleeing from the human race, as fast as the Hubble Constant can take them.
@HDB: Can ya blame 'em? I'd want to go faster away from this mess.
I am a a woman with Aspergers - I was never non-verbal (in fact - as you will see - in writing - and in person - I am highly verbal.) - I am also the parent of an Aspergers child and I have spent a lot of time with nonverbal autistic kids (after all - if anyone in the world has a chance to facilitate communication between the neurotypical and nonverbal populations - it's people who are autistic *and* verbal.)
One of my hobbies is biochemistry and pharmacology (at 39 - I am hoping to make it not a hobby but a profession in the next few years - correct me if I am wrong about any of this - my main interest is psychopharmacology - in fact I have been following MAPS work with MDMA rather closely - strangely the government may have banned a short-term use miracle drug - but no wonder - since they can't make money off lifetime runs of 5-12 pills) - thiomersal (what they claim causes autism) is only used in a few vaccines - not only that but it's one of the few mercury compounds that is not poisonous to humans. It is eliminated extremely quickly - too fast for it to cause neuro damage. Then we have all this other crap. Some autism can be comorbid with GI issues and even Rheumatoid arthritis - but in that case you're probably looking at the wrong cause - a karyotype in my case showed that I had Klinefelters syndrome (I was assigned a male gender at birth) - and autoimmune disorders and autism seem part and parcel - also I find it interesting that the numbers for assigned at birth male population (1%) who have Klinefelters and the 1/100 (again 1%) are so similar - there's probably crossover at some level. Even if there is not - there is so much we can tell from a genetic profile that can lend clues to all of this - or maybe it's part of the evolutionary process. Either way ... Taking potshots in the dark at medical and neurological issues is playing with fire - almost everything these people espouse could be extremely dangerous to mess with for any reason with no clinical proof they really work.
It's the same problem I have with shot-in-the-dark psyche med prescriptions - yes they work for some - but every drug has a slightly different profile in receptor binding, transmission, and release of endogenous chemicals - that one SSRI may work - but it probably won't - and then they try the next - with children this is especially dangerous as during the developmental process we tweak these things before they have truly settled into their final "configuration" if you will. I had ADD when I was younger - now I have just Aspergers as part of my KS - and I did not take AMP or Ritalin when I was a kid. ) - so we have no clue whether we should be providing just supportive therapies during those you ages - or we just keep giving kids stimulants. I am inclined to say the supportive therapy and shun drugs except in a last resort - because do we really want to be creating a world of potential methamphetamine users because a doctor decided that it easy to take the quick way out with all our kids. You sound like a very same person with a rational method of making decisions. Evidence based.
Thanks for speaking truths - SPL
My Fox Austin reports on Polly Toomey's story about taking Alex to see Dr. Krisgman. I think Autism Trust USA is the residential program that Dr. Wakefield is involved in.
http://www.myfoxaustin.com/story/22648977/boys-death-shines-spotlight-o…
Wow! Not too many people could mange to so smoothly transform a teenager's death into a commercial for a potential business opportunity as Polly does..
could MANAGE to
Just by the by, does Polly have a Green Card?
Anne: You beat me to that Autism Trust article; Dachel just posted and linked to it. (Too bad I "don't do Facebook").
Tommey is again lying about Dorothy and Alex's "homelessness"...they've lived in that apartment over the plumbing store (where Dorothy and the caregiver murdered Alex), for quite a long time.
Up thread, I questioned why Alex and his murdering mother and caretaker were not referred to Arthur Krigsman, Wakefield's gastroenterologist good buddy, who has professional practices in New York and in Austin, Texas; Polly Tommey confirms that they took Alex to Krigsman's office in Far Rockaway, New York.
- So why didn't Krigsman admit Alex to the hospital in New York where he claims he is affiliated (Winthrop University Hospital, Mineola, New York)? I just did a Google search at that hospital and he is not affiliated there.
Orac blogged about about Polly Tommey, who is Wakefield's partner at the Autism Media Channel (and who has recently moved to Austin Texas with her entire family from the U.K.) and her setting up of the Autism Trust USA, patterned after Tommey's Autism Trust U.K. It makes for some mighty interesting reading...
http://scienceblogs.com/insolence/2012/01/05/legal-thuggery-antivaccine…
At least the "motel to motel" lie has more embroidery now. Let's see: (1) "chained" to bed; (2) release from hospital, presumably on the terms in outlined in the previously circulated agreement; (3) intractable GI issues; (4) ROAD TRIP!
^ "in outlined in"
Our "Autismum" blogged about Polly Tommey when she and her family were still in the U.K....
http://autismum.com/assorted-loons/warrior-moms/polly-tommey/
I also wanted to link to Alex Hannaford's excellent blog in the Texas Observer, January, 2013 that details the epicenter of the autism woo in Austin, Texas, (that Orac also blogged about), which I had assumed was dormant. Well it wasn't "dormant"; a crank posted 8 days ago. So...I couldn't *resist*. There's my post about Andy's lawsuit...and I linked to our discussion. :-)
http://www.texasobserver.org/autism-inc-the-discredited-science-shady-t…
@#$%!*& blockquote. Everything after the ellipsis is mine.
At least the “motel to motel” lie has more embroidery now.
Merely corroborative detail, intended to give artistic verisimilitude to an otherwise bald and unconvincing narrative.
The data strongly suggests that appropriate treatment of ADD with medication reduces the number who have substance abuse problems later, not increases. Some may find this paradoxical, but then again, the well-observed fact that kids with ADD actually get calmer and have more self-control when given appropriate stimulants is called "the paradoxical effect."
Jake has been tweeting about Bolen's latest rant. Did Jake actually go to the Autism One conference? (He already stated that he didn't do his scheduled "advocacy and stalking" presentation).
If Jake didn't attend...then who is passing the dirt about the conference to Bolen?
How about that $ 40,000 that Bolen states was *donated* to Congressman Issa by Jennifer Larsen...as an incentive for Issa to attend the Quack Fest?
http://www.bolenreport.com/Mark%20Geier/autism%20infighting4.htm
While I have no particular sympathy for Blaxill, I would love to see him and/or Larson hale Pattimmy's miserable ass into court for the ongoing libel.
@ Narad: Someone from the Canary Party made the last minute arrangements for Darell Issa to come to the Quack Fest. 40 K !!!
https://www.facebook.com/pages/AutismOne/199957646696501
(May 12th) "Great news! Congressman Darrell Issa is coming to AO/GR 2013. We'd like to thank the The Canary Party for making it possible!"
Hello Siobhán,
Narad has some great advices. Regarding a middle of the pack authorship, I have one here and I worked over 55-60 hours per week during the summer I started to work on that project and slightly less thereafter during school time and I ended up with a third author position paper.
I assume you already have a bachelor degree but if not, I'd recommend looking up if you can get your student loans converted to bursary given your disability. I am autistic and benefit from such a program and more here in Quebec and in the states, there should be a similar program. you can ask the peoples at the office of student with disability of your choice university to help you with that. In most case, there will be a form similar to this one to have filled out by your doctor after which, you will have your student loan converted to bursary.
After that, it will (I hope) be smooth sailing.
Alain
@Narad, lilady -
No bond for either the mother or godmother; next court date is July 3.
My curiosity being piqued, I took a look around... The top hits for "alex spourdalakis" (other than news stories) are not the anti-vax/autism-made-my-kid-defective sites.
More information about the parents of Alex, Dorothy and Minas...and the "caregiver/godmother":
http://www.pharmacychoice.com/News/article.cfm?Article_ID=1069159
Reading the article from lilady's link, I have to wonder - does being given an overdose of sleeping pills, stabbed in the heart, and having one's wrists slit count as "signs of abuse"?
I am still heartily confused.....regular doctor's visits, yet no indications of what they were for (except that Alex seemed to be afraid of going), family members that say Alex was a happy kid who loved music, but he's portrayed as a non-verbal and hyper-aggressive by Anti-vax people....not to mention the lies about the homelessness, and the mother accepting no help but asking for an attorney (wonder who convinced her that was the best course of action).
The more information that comes out, the less sense the original story makes.
This poor child and his mother had their story hijacked by AoA to serve their own purposes.
The entire *story*, IMO, has the stench of Munchaussen-By-Proxy Syndrome. I think Dorothy, the "caregiver/godmother" and Alex were frequent flyers in hospital emergency rooms.
By the time Alex was six years old, his folks managed to run up $ 400,000 in debt...certainly not on diapers. Why wasn't Alex in a school program? Was he ever in an "Early Intervention, Pre-School and summer program?
They needed the assistance of police to drive him to "doctors appointments"...yet, the "helpers" involved in the case "drove all night" to take Alex to Arthur Krigsman's office in Far Rockaway, New York for a bowel scoping, (13 hours straight driving time and 817 miles...one way).
don't put much weight on anything Bolen says. The $40k donation to Issa's PAC is almost certainly nonsense
What's her name Larson isn't listed as a major donor to the PAC
http://www.opensecrets.org/politicians/contrib.php?cycle=Career&cid=N00…
@ I. Rony Meter:
I already checked that website:
"This table lists the top donors to this candidate in the 2000 - 2012 election cycle. The organizations themselves did not donate, rather the money came from the organizations' PACs, their individual members or employees or owners, and those individuals' immediate families. Organization totals include subsidiaries and affiliates.
Why (and How) We Use Donors' Employer/Occupation Information
METHODOLOGY
NOTE: All the numbers on this page are for the 2000 - 2012 election cycles and based on Federal Election Commission data available electronically on Monday, March 25, 2013. ("Help! The numbers don't add up...")
Feel free to distribute or cite this material, but please credit the Center for Responsive Politics. For permission to reprint for commercial uses, such as textbooks, contact the Center."
Darell Issa was not on the original "Congressional Panel" that Autism One was bragging about. According to the Autism One Facebook page, dated May 12, 2013...
https://www.facebook.com/permalink.php?story_fbid=651841774841417&id=19…
What's her name Larson is the same Jennifer Larson who is/was an "operative* for Wakefield in Minnesota when Wakefield was discouraging Somali-American parents from getting the MMR vaccine; which precipitated a huge measles outbreak in Minneapolis, 2011. What's her name Larson tried to turn Brian Deer's seminar at U-Wisconsin-LaCrosse into a "debate" for Andrew Wakefield and also wrote a scurrilous complaint letter, when her efforts failed:
http://briandeer.com/solved/vanderhorst-larson.htm
Yes Bolen is a bullsh!tting crank blogger, but *someone* from the Canary Party had some influence on Issa's decision to go to Chicago to appear on that Congressional Panel.
I have not had time to read all of the posts on this page. I have a 6 y/o son, who was diagnosed with moderate level autism and apraxia of speech at around 30 months old. He has also suffered from chonic, daily diarrhea (5 years and 2 months of it; it began when he contracted a cold/virus from me at 10 months old), Hashimoto's thyroiditis, and Cerebral Folate Defieciency Syndrome. His Hashi's is gone (anti-bodies are now WNLs) and his diarrhea is gone, for the most part. The treatment that has worked, by far, the most effectively with our son, is GcMAF injections. If any of you do not know what CFD Syndrome or GcMAF tx is, please do a search with a regular search engine or a search on PubMed.
In Dr. Jeff Bradstreet's practice, he is seeing dramatic improvements in 80% of his patients who are undergoing GcMAF tx. He has a 15% recovery rate, meaning complete recovery from the diagnosis of "autism". Since the anti-viral tx works so well with children who have autism, one has to think that autism is primarily a viral disease. Children who have a genetic predispotion to auto-immune/immune and endocrine disorders often develep autism. Rather than developing auto-bodies to a virus after a vaccine, an enzyme nicknamed Nagalase is made by the virus, attaches to it, and allows the virus to cross the cell walls of the body. I know of many parents who report a huge regression in their child's functioning after a vaccine. This is likely b/c their bodies cannot process the virus like many other children are able to. I think that we need to focus on the viruses, wherever they come from, and the child's body's ability to process that virus once it is injected into the body.
My husband and I delayed our son's vaccines until 2 y/o b/c I thought that they were the sole cause of autism. At 2 y/o, our son was not talking, was still drinking out of a bottle, and had sensory dysfunction and severe oral aversions. His MD advised to NOT start to vaccinate at that time. IMO, it is a matter of parental choice and parental rights whether one wants to vaccinate one's child. Our son remains unvaxed at this time. He has never had any illness that is life threatening. He has had zero ear infections.
There is a history of auto-immune disease, early onset heart attack (1 in 3 children who have autism have a close relative who has had a early heart attack. The correlation is likely thyroid dysfunction, inflammation, and an inability to process short chain fatty acids. Please see Kenneth Bock's book for more info on this.) I recently learned that I have hypothyroidism (T3 only) and a little bit of Hashi's. My son's uncle has Grave's disease, both of his grandmother's have hypothyroidism, and I have a grandfather who had pure red blood cell aplasia when he was alive. In some scientific studies, pure red blood cell aplasia is considered auto-immune.
My husband and I started with biomed in treating our son, b/c that is the only treatment that I had ever heard for treating autism. He is retaining viruses based on his Nagalase blood plasma levels, so I see no reason to inject him with more viruses that his body will likely retain. (I do not hear about any pediatricians checking a child's antibody levels before getting a booster shot; the child's body may not have produced any antibodies, they may have the virus still inside of their bodies, or their anti-bodies may be sufficient enough to not need a booster shot. Even my dog has his titer levels checked so that I do not overvaccinate him.) In addition to having an immune system that cannot process the viruses adequately, many children who have autism cannot methylate (detox) the additives in the vaccines. Usually the parents of autistic children are poor methylators themselves.
I want to reempahsize that autism is a disease of the immune and endocrine system, which ends up affecting the neurological system. (i.e. viruses enter the cells of the brain). My son has retained viruses and has high heavy metal levels without ever having a vaccine. His immune and endocrine systems are dysfunctional. I did have a RhoGAM shot, that likely contained some mercury, even though the company denies it. My son retains heavy metals from the environment. He retaisn viruses that he contracts from the environment.
In terms of Dorothy and Alex, I did meet them one time. Dorothy seemed "odd", and I know from someone who worked with her and Alex for an entire school year, that she had some type of mental health problems, which likely involved narcisstic tendencies. Alex was in an excellent public school district, where he was offered every benefit and support possible to him and his mom. Even with all of this support, Dorothy chose outplacement for her son, to a private therapeutic school that cost her school district and the state of Illinois $82,000. I am NOT speaking for the school, but I have been told that Alex was expelled from the school b/c the school staff could not handle Dorothy's personality issues.
As far as I know, Dorothy was NEVER a biomed mom. She had chosen the psych med route with her son. He was taken to the hospital b/c of behavior problems, not b/c of GI issues. The autism "advocates", some of whose names are listed in the above article, probably wanted to help Alex and his mom, but I have not heard that they knew any of the history of Alex's school and family situation, and that they were dealing with what, I would call, an unfit mother. (Dorothy allowed her son to use things like chainsaws in the home, even though he was at risk of harming himself and others.) From my own observations of Dorothy, she appeared to have a personality where she loved public attention, loved to be in the spotlight etc.. This is my opinion, and my opinion only, but I believe the biomedical "advocates" likely tried to force or push the GI scopes on Dorothy and Alex. Chicago area hospitals treat GI disease in autistic children as a behavioral problem, rather than a physical, medical disease. (See Krigsman et al for a scholarly article that demonstrates that the GI disease in autistic children is a unique disease that has not been found in any other subgroup of individuals.) In my opinion, the militant autism advocates, used a woman who was likely mentally unstable, seeked the limelight, and Loyola hospital for their own political agenda. (i.e. All hospitals need to treat GI disease in autistic children who have symptoms of GI disease.)
And yes, Dorothy had many options given to her, from what I have heard, for placement for Alex. Instead, she chose to kill him. I believe it was her possible mental illness that killed him. (It was likely a pre-existing condition, prior to having a child with autism. Having a child with autism does not cause a parent to have anything more than severe depression, grief, and anxiety. It does not lead to a parent murdering her child.)
Amy, I am sorry about you son's conditions. My son also had (still has) oral motor dyspraxia, which may or may not be due to a history of seizures. His only treatment has been lots and lots of speech therapy, over ten years worth.
I suggest you read my comment #418, and the link I posted on it.
@ Amy: You seem to know an awful lot about Alex and Dorothy's homelife and Alex's private medical history...after only meeting Dorothy one time.
You seem to know an awful lot about Lisa Goes' motivation and private conversations that took place between Goes and
Dorothy, as well.
What kind of tests did Dr. Blackstreet order to come up with those multiple diagnoses for your son...and which specialty laboratory performed those tests?
What Biomedical treatments, anti-viral, anti-fungal, antibiotic treatments has Bradstreet prescribed for your son?
My son has been seen by several MDs, including Arthur Krigsman MD (GI, EGC, WCE, and colonoscopy), Dr. Richard Frye MD PhD (autism neurologist, diagnosed CFD Sydrome and ruled out seizures and mito dysfunction). On my son's "scopes", he has "moderate, marked terminal ileal lymphonodular hyperplasia", meaning he had the disease at the end of his small intestine. He also had/has borderling EE.
I must have not said this before, but in order to obtain an official diganosis for CFD Syndrome, antibodies to Folate must be present in the blood, which is measured via blood draw. In addition, a lumbar puncture is performed (under general anesthesia in our case) in order to measure folinic acids levels in the cerebrospinal fluid.
In terms of Dr. Jeff Bradstreet MD and measuring a person's viral "load", last Fall Dr. Bradstreet was testing the levels of the enzyme nicknamed Nagalase. Since Nagalase is attached to the viruses, it is means of measuring load.
lillady, I have not looked back at what I wrote, but hoepfully, I mentioned that most of my information is from a woman who worked at one of the schools that Alex attended during the 2011-2012 school year. I am, by education, an occupational therapist. I have not practiced in 4.5 years, but I stay in touch with my former collegues. The woman whom I am talking about was involved with Dorothy and Alex on, at least, a weekly basis, although she never did direct treatment with Alex. She did break confidence, to a certain extent, seemingly out of sheer frustration at how one sided the story was in February of this year. Since she knew Dorothy and Alex personally, it is her recollection that, as of the Spring of 2012, Dorothy was choosing psych meds for her son and had never been interested in biomed. The woman also told me that horrible things were going on inside of the home. I only know about Dorothy allowing Alex being allowed to use a chainsaw at his home. My friend had to stop herself from saying anything else, since what she was sharing with me was confidential.
Dr. Bradstreet has only sent GcMAF injections to me. They are not a prescription med, so my son does not need to see Dr. Bradstreet in person once time a year. They did meet at the Autism One conference in Chicago this year. We see a biomed MD in the Chicago area; she has prescribed some tests such as The ONE test (optimal nutrition) and The OAT test (organic acids). We have also had many stool analyses done for Dr. Krigsman (in 2010) and some for the biomed MD.
Dr. Frye initially prescribed Leucovorin (prescription folinic acid) for my son, but now we get it through the autism MD, b/c she has it compounded. (No dairy products can be consumed with the medical diagnosis of CFD Syndrome. Please see an article about how dairy down regulates the cerebral Folate receptors....the wording may be a bit different than I have written. This is likely why some children who have autism signigicantly improve after dairy is removed from the diet. While on dairy, they are in a type of "brain fog".) Non-compounded Leucovorin has a component of dairy in it.
lilady, Dr. Jeff Bradstreet MD is a neuroinfectious diseases MD. He is not a DAN! or autism MD, although he does treat a lot of children who have autism. It sounds like you may have never heard of him, which is odd, if you are educated on the syndrome of autism. His is a household name among parents who treat autism as a medical disorder. GcMAF is, by far, the most effective treatment that my son has had over the years. Taking dairy out (b/c of CFD) and MB12 injections (prescribed by his autism MD) have also been HUGE in his healing from his multiple illnesses.
Also, if you have not heard of Dr. Richard Frye, MD PhD, I know that you are not part of the autism subculture. I believe he is one of the leading MDs in the nation in mito dysfunction, seizures, and CFD Syndrome.
Taking gluten out of my son's diet did not change the consistency of his #2s. But, since having the anti-viral, immune boosting GcMAF injections, and a cessation of the diarrhea, my son does have diarrhea if he accidentally consumes gluten. He gets back on track after a few GcMAF injections.
Again, my information about Dorothy does not come from the one time that I met her; it comes from knowing someone who knew he and her son over a nine month period of time. This person had educational records and was recalls that Dorothy had only done meds with Alex. Of course, she cannot speak for Alex's entire lifetime history.
Also, I will read comment #418. Chris.
@ Amy: I'm calling bullsh!t on your posts:
"...In terms of Dr. Jeff Bradstreet MD and measuring a person’s viral “load”, last Fall Dr. Bradstreet was testing the levels of the enzyme nicknamed Nagalase. Since Nagalase is attached to the viruses, it is means of measuring load..."
"...Dr. Bradstreet has only sent GcMAF injections to me. They are not a prescription med, so my son does not need to see Dr. Bradstreet in person once time a year. They did meet at the Autism One conference in Chicago this year. We see a biomed MD in the Chicago area; she has prescribed some tests such as The ONE test (optimal nutrition) and The OAT test (organic acids). We have also had many stool analyses done for Dr. Krigsman (in 2010) and some for the biomed MD..."
and,
"...lilady, Dr. Jeff Bradstreet MD is a neuroinfectious diseases MD. He is not a DAN! or autism MD, although he does treat a lot of children who have autism. It sounds like you may have never heard of him, which is odd, if you are educated on the syndrome of autism. His is a household name among parents who treat autism as a medical disorder. GcMAF is, by far, the most effective treatment that my son has had over the years. Taking dairy out (b/c of CFD) and MB12 injections (prescribed by his autism MD) have also been HUGE in his healing from his multiple illnesses...."
Oh I've "heard" about Dr. Jeffrey Bradstreet, Amy.
He's not a "neuroinfectious infectious diseases M.D." (whatever that is), From his own website, his Curriculum Vitae:
http://www.icimed.com/DrCV2008/JeffBradstreetCV2007.pdf
Stephen Barrett has also heard about him, Amy:
"http://www.quackwatch.org/11Ind/bradstreet.html
Oops, messed up that Quackwatch link...
http://www.quackwatch.org/11Ind/bradstreet.html
Amy, where are you?
What type of viruses did Dr. Bradstreet test your child for...and which specific viruses were found to be currently infecting your child?
Which specialty laboratory performed those tests?
So, Dr. Bradstreet is "sending" (mailing?), GcMAF injections to you, eh?
http://drbradstreet.org/
Amy, the link I posted in #418 has lots of interesting things to say about Dr. Krigsman.
THANK YOU for writing this piece. I think it's important for people to get this perspective. Like you I was concerned about this boy however, things didn't add up. I don't take kindly to people who take advantage of other and lie. They asked for donations, to make phone calls, and write emails. What doctors did they want him to see? What tests done? What laboratories and ranges used? We will likely never hear the hospitals side. People have been and continue to be bamboozled by these types of individuals. How do I know? I fell for it. I spent thousands of dollars on supplements, diet and doctors appointments. Until one day, the haze lifted. Thank God. Hey-in an adult and made the decision to try this stuff, no one twistedu arm. But I do think "new" parents are really vulnerable to this "gimmick". However, this case just put me over the edge in anger. People were misled and continue to be. A kid was murdered yet the people you cite in the article hold these women up as champions for their cause. It makes me sick to my stomach. As an autism parent., I don't want to be associated with such delusional people. They make ALL of us who are autism parents look crazy. Just look at Ms Goes facebook page and read it (all open to view) No one takes is seriously and I think this is partially to blame.
@ Mom: I think we all "get it". I, for one, am outraged that Wakefield and his motley crew, including Lisa Goes, who encouraged Alex's mother to make a spectacle of Alex, who exposed Alex practically naked to the world...and who are part and parcel of the premeditated brutal murder of Alex, are shopping around a documentary film of Alex's last days on earth:
http://www.blogtalkradio.com/thecandystore/2013/07/14/our-special-guest…
You know, I looked the entire facebook page of Lisa Goes and found only two mentions of Alex Spourdalakis and now, I did a search for Alex Spourdalakis on AoA and I have to wonder at their bias in this article It is simply incredible how much they lie (I don't ever believe the medical doctor said that autism is a mystery).
Alain
Alain: Everything that AoA wrote about Alex's hospital stay is fabricated by the mother, the "godmother", Lisa Goes and her crew...and Andrew Wakefield. They are incapable of telling the truth.
Alex was a "frequent flyer" at area hospitals, as confirmed by the police department after his murder. A police official stated that they took Alex to hospitals, frequently when Dorothy and the "godmother" (reportedly a doctor from the old Soviet Union), summoned the police for transportation. Yeah, sure, they needed the assistance of the police, yet "managed" to drive Alex to and from Arthur Krigsman professional office in New York.
Can you imagine any hospital, any hospital administrator, any of the many doctors who saw Alex during his frequent hospitalization, risking their licenses and their professional licenses because they failed to provide the tests and treatments these crazy, demanding women were insisting for Alex to be subject to?
Who gave Wakefield permission to package video clips of Alex and fashion those clips into the documentary film that Wakefield is shopping around TV networks?
@A Mom - doctors and hospitals are prohibited from sharing personal patient information, but there is no such prohibition on parents / "activists" that want to make up whatever stories they want.....
@ lilady,
It's always the parent. Something I hope to answer with my law courses is why there isn't a person mandated to provide custody to the child when the parent want to submit the child to non-SBM treatments and also, where do we draw the line at unproven treatments.
Alain
I am sorry for all of the typos.
BRAVO Lillady. I had no idea about a documentary. How low can they go? THEY are the ones exploiting the child's memory. Wow.
Here is a little ditty by a "colleague" of LJ Goes and Jeanna Reed. Apparently she is a nurse and a co-founder of that Autism is Medical organization. I would love to watch Lillady devour this nasty woman.
http://theautismbureau.blogspot.com/2013/07/pain.html?m=1
She certainly has a way with the F-bomb, doesn't she?
@ Mom: Jill Rubolino has a registered nurse licensed in Midland Texas, issued 2010...a classic crank blogger who claims to be "a lawyer stuck in a nurse's body". Nice touch from the link you provided...Rubolino refers to the AAP as the "American Association of Pediatrics". What a moron.
Her organization is the group that got involved with Alex's Spourdalakis' care during his hospitalization.
From her "Autism is Medical" Facebook page, take a look at all the diseases/disorders she claims cause autism/are linked to autism; yeast and bacteria, food allergies, PANDAS, mitochondrial "disease", Lyme, lupus Tourettes, tics., etc.
https://www.facebook.com/pages/Autism-Is-Medical/249856855034784
No, I won't be posting on her blog as I don't want my IP address available to her or her cronies.
What have the mother and caretaker fabricated? I don't recall any statements at all. My inclination is merely to assume that the whole show was due to Goes et al.
Narad: Who, in the past, brought Alex to the hospital all those times? Who was interviewed on local television? Who let Goes and her crew into Alex's hospital room and permitted Goes to run interference with the doctors assigned to take care of Alex? Who gave all those interviews and background information to Goes that were featured in AoA? Who gave permission for the videotaping of Alex that was put on YouTube and the pictures of Alex practically buck naked in 4-point restraints that were featured in the many published articles, that ran for weeks at AoA?
Who allowed Wakefield to make arrangements for Alex to be driven from Chicago to New York...and back again, to consult with Arthur Krigsman and signed permission for Krigsman to examine and probably scope Alex?
Who signed permission (Alex's mother and or Alex's father?) for their starring roles in Wakefield's new documentary about Alex's short life, before he was brutally murdered?
More from the vile Jill Rubolino:
http://www.autismwars.com/?p=326
Vile is a good descriptor. An acquaintance of mine as a member of the Autism is Medical group online for a short time and said it was very much like a cult. People were berated for asking questions or thinking independently.
And.....now lupus is a contributor to autism?!!! Good God. Don't you love how they use Mito Disease interchangeably with Mito Dysfunction? What an insult to families who are affecte by the disease!
BTW-they (Goes and company) claim they were called in by the hospital to consult because they (the doctors) didn't know what to do. Have you ever heard a bigger bunch of bullsh*t in your life? So much narcissism.
Goes had a book to sell. Funny how the timing of their involvement with the family was the same time the book "Thinking Moms Revolution" was released.
MWCFH: No, I'm not surprised at all. Shows how much they really care about autistic kids, that they're even exploiting Alex's death to sell books, doesn't it?
And I'm not surprised about the mito disease/mito syndrome/lupus thing. This is after all, a crowd that thinks ADD and ADHD are indications of vaccine damage and diagnose wheat allergies on the basis of youngsters having 'bags' under their eyes, rather than...oh, not getting enough sleep because they were reading under the covers after 'lights out.' They don't understand diseases, kids or anything at all really. They whine about how their kids regress and don't get them any help or encouragement.
Don't you guys know that "Autism is Lyme"?
Cripes, I'd love to have a nickel for every bogus "mito" test those "Autism is Medical" cranks subjected their kids to...and a dollar for every time those "Autism is Medical" nimrods posted a comment, "MY CHILD HAS A MITO DISORDER!!!!!"
Screams Munchausens by Proxy, doesn't it?
I have to say, I have learned a lot by reading through these comments. I am Happy there are people who are far more intelligent than I who can better articulate my frustrations with these Warrior parents!!! Lillady, out of curiosity, are you an autism mom too?
@political
You are on the money. These woman have NO business dispensing medical advice, especially in a situation as critical as Alex's. It's hard to believe people can have such big egos
and believe their own hype. Legends in their own minds.
I would like to express how refreshing it is to have 'A Mom Who Can Think For Herself' who actually is a mom who can think for herself.
@ Mom Who Can Think For Herself: I am not an "autism mom". My son was born with a rare genetic disorder in 1976, which caused profound and multiple intellectual and physical impairments (spastic quadriplegia) and complex medical needs... a partially controlled grand mal seizure disorder, immune suppression and a bleeding disorder (pancytopenia, ITP and platelet aggregation and adhesion disorders). He also had "autistic-like behaviors"...not autism.
So, I have been involved in advocacy on behalf of my own child and on behalf of other developmentally disabled kids and adults for 37 years...even after my son died, peacefully in his sleep, June, 2004.
I also worked as a public health nurse clinician-epidemiologist, investigating cases, clusters and outbreaks of vaccine-preventable-diseases, and I know only too well how the small, but vocal anti-vaccine and anti-science parents of autistics and other assorted crank bloggers and their groupies, seek to destroy the public health system in our country, by scaring off parents to convince them that vaccines are implicated in the onset of autism.
You are a welcome member of our community here at RI. :-)
I would like to express how refreshing it is to have ‘A Mom Who Can Think For Herself’ who actually is a mom who can think for herself.
Let me second that, it's very nice to have a mom who does think better than all of the soccer mom at TMR.
Alain
AMWCTFH: Legends in their own minds.
I think part of the problem is that parenting is much more of a chore these days, and it's become something only a few people do. So, these women start winding down on their careers to prepare to have a baby, and then you have driven,highly educated women, who are bored and incredibly frustrated that they sacrificed their careers for an imperfect child, who loves them but can't display it the way an NT kid can.
Dads are suceptible to woo, too, but they are allowed to have a life outside of kids, so it's not as noticeable. And unlike mothers, they have a socially acceptable escape route. The mothers tend toneed something or someone to blame and a way to 'fix things.'
Alain:Not soccer moms, bourgombies.
Thirded.
Awww...*blushing* thanks so much for the kind welcome. There are MANY who think like I do, but don't speak up as much because, frankly, it's not worth being attacked again and again by these groups of women. A nd they attack like a wolf pack! Look-I drank the kool-aide once. Nothing ever felt "right" but I was very scared and worried and most of all vulnerable. I thank God I never did anything outside of diet an supplements....chelation? HBOT? IVIG? No way!!! I love my child too much to even remotely consider such things. And when you come down to it, that is the fundamental difference ...acceptance is a dirty word to them. If that word is used, people are told they have given up, too lazy, or scared because "it's too hard." It's peer pressure and bullying as if we were all in high school. I do agree with the idea of ensuing there isn't a medical issue (a TRUE medical issue) with these kids. But subjecting my child to unneeded spinal taps to check for cerebral folate antibodies is just plain wrong. (Besides-Dr Freye's study wasn't successful anyway). If these people want to do that to their children I guess it's their prerogative, but I do not appreciate it when they hold these diagnoses, labs, and procedures as anything more than what it really is: "alt-med" quackery.
Lillady-I am so sorry to hear of your son's passing. He was very lucky to have you as his mother. I am glad to hear you continue to advocate for children and adults with disabilities!
@political-that very well may be true. These women are no dummies and most have had very successful professional lives which gives them some "false credibility" in my opinion. They love their children just as you and I do; I just think their judgement is very lacking. Sometimes I wonder if they can't handle the fact their child isn't perfect because of their over-achieving ways. But that's really not very nice of me to say because I don't know. Maybe they love their kid so much it allowed them to fall down the rabbit hole. I draw the line when they back murderers. How far "gone" do you have to be to do that?!! I think they have crossed a line in that they are dangerous people. Very extreme in their views. Everything is a government conspiracy. God-how miserable their daily lives must be!
@ PGP:
I call them 'bobos' ( the bohemian bourgeoisie)
For more of this material, see 'nutureparenting.com- the project of Alison MacNeil, LKH and that woman who wrote "The Business of Baby"-
-btw- her book sales also make HER part of the biz.
@ A Mom...Herself:
Unfortunately, several of the antivax elite have degrees/ have worked in social work, counselling, psychology ( i.e MacNeil & Professor of TMR, Ginger Taylor of the Canaries, Katie Wright )
I hang my head in shame.
-btw- welcome aboard; good commentary.
@DW - I trust you saw Mama Mac's epic whinge from a couple of weeks ago about the friends she's lost because they just can't handle THE TRUTH about autism and vaccines? It's a telling admission that she has a peer group that would support her in a reality-based view of her situation, but she's willing to cut them loose so she doesn't have to give up the false hope that she can "cure" her son. I hope those people will still be there for her if she ever wakes up from the TMR dream world.
http://thinkingmomsrevolution.com/youll-never-eat-lunch-in-this-town-ag…
Hi Mom Who Can Think For Herself - welcome aboard!
Bobos. :)
I agree; backgrounds where they know enough to be "dangerous" so-to-speak. I admit-they must have some PR people "on staff" because I will say the roll-out and execution of the TMR stuff was done quite well. So, I suppose using their logic, those who don't agree with them are "non-thinkers"? Very divisive strategies.
Hi Edith-I read that one too. (Mama Mac=Allison MacNeil I guess?)
Look at this presentation about how cults re-wire the brain. Sounds very familiar!
http://m.blogher.com/frame.php?url=http%3A%2F%2Fwww.ted.com%2Ftalks%2Fe…
Not sure if anyone has ever read this....from 2009....very good
http://m.blogher.com/identifying-and-avoiding-autism-cults
Shannon is part of the growing community of parents of autistics who have their own blog; people such as Matt Carey at Left Brain/Right Brain, Shannon and Emily Willingham at The Thinking Person's Guide To Autism, Emily Willingham (again), on her Forbes blog, and Autismum, who also blogs on the Skeptoid blog.
(There are others, that I may have missed), and a huge number of bloggers who do not have autistic kids, as well.
Hi, A Mom Who Can Think For Herself (and others who may be interested):
If you would like to read other autism parents' journeys, Shannon Rosa has been blogging at Squidalicious since 2003 (!).
http://www.squidalicious.com/2013/07/10-years-of-squidalicious.html
Emily Willingham started blogging about autism in 2006
http://daisymayfattypants.blogspot.com/
She's stopped blogging directly about her children as they enter adolescence, and her main blog is more focused on science (with autism advocacy):
http://www.emilywillinghamphd.com/
Jennifer Byde Myers writes about autism and parenting at
http://www.jennyalice.com/
The four of us started a group blog, The Thinking Person's Guide to Autism, in June 2010
http://www.thinkingautismguide.com/
Kristina Chew celebrates her son Charlie's life at
http://autism.typepad.com/
There is a relatively new blog by autistic adults, addressed to non-autistic parents of autistic kids:
http://wearelikeyourchild.blogspot.com/
Hi Mom...Herself, I have a comment in moderation which gives links to science-positive blogs written by autism parents (and autistics).
The deal is, the anti-science, autism-hating venues such as AoA and Thinking Moms' Revolution are a tiny faction of the broader autism community. They just have a big, well-funded bullhorn.
That is in fact one of the reasons we started The Thinking Person's Guide to Autism: to counter the loud but counter-factual narrative.
Thank you - can't wait to check out the links; I would love to read them. I follow The Thinking Person's Guide to Autism on FB. Very good group! I appreciate what you are doing.
DW: I better not; a woman can only take so much idiocy.
AMWCTFH: That's a very interesting article. Amazing how people can trick themselves into believing the dumbest things, isn't it?
It is...and what is our weak point? Our kids. I know how judgement gets clouded because I did the same. It's out of love and being confused and scared. Then you have these people who prey upon the vulnerable. I've never been to Autism One but think of all those exhibitors alone who claim to have something that will help. I think a lot of these people who get into the "warrior" mode (not talking about these "leaders") need help because they are being taken advantage of. It's actually sad. Scammers and snake oil.
I am glad to see there are many who oppose these radical viewpoints, even if they aren't "as loud". However, when I have taken a peek at Goes' Facebook page I see someone who is just preaching to the choir. They just pat themselves on the back..but but according to her, she had "big pharma" watching her every move. Really?
BTW-does anyone know the latest about Alex's case? I haven't seen anything...
A Mom Who Can Think For Herself: "BTW-does anyone know the latest about Alex’s case? I haven’t seen anything…"
The latest is that a certain CBS reporter thinks it is okay to murder disabled kids:
http://thepoxesblog.wordpress.com/2013/08/30/it-is-now-okay-to-kill-you…
@Chris - I just posted over on the other thread, but I believe that the Prosecutors would be very interested to know exactly (and have them testify) what the involvement was of the folks from AoA - what encouragement or discouragement did they give to that mother, for example?
Were they part of the decision-making process to refuse to accept assistance from the Local Autism Support Groups?
If those Prosecutors are really going to get to the whole story, it would seem that AoA & Wakefield in particular, were intimately involved at some point with the family situation, and should be interviewed.