“I feel like getting in my car, driving away and never coming back. I can’t stand it anymore. If the screaming, howling, humming, and screeching doesn’t stop I will lose my mind. 14 hours a day. From the second he open his eyes until the second he closes them there is noise. Even if you tell him to be quiet he sits there and says “be quiet…be quiet” over and over. Not more than 10 seconds goes by where some ridiculous sound isn’t coming out of my son. He talks in a high pitched screechy voice that makes every nerve ending stand on end. He screeches and screams for no reason. The humming, the high pitched humming all day long. I can’t take it. My head hurts so bad and there are only so many things I can take for a headache. I wake up at 7 am, or rather I am awakened by screeching at 7am and get no peace until about 9pm. By then my head hurts so much it doesn’t matter. I can’t get anything done because I can’t focus with the noise in the background. I can’t have a phone call. I can’t have a conversation in person. I know this is going to upset some people but I swear, I miss the days when he didn’t make a peep. not a single peep. I remember when I used to cry and ask him to talk to me, to say anything. I should have been more specific and wished he’d speak and make meaningful sentances rather than walk around all day and say meaningless phrases over and over, and scream and screech when he didn’t. know what meaningless phrase to use at the moment. I have about 40 minutes before he goes to bed then I get to listen to him hum himself to sleep for an hour. By then I should be ready to jump off a roof.
Thanks for letting me vent. Not sure if it made me feel better but at least if I jump off the roof someone knows why”
Posted by “Mary”, mother of “Saul”, age 7.9 (7 years, 9 months), to an autism “biomedical treatment” yahoo group in August 2009.
The idea that vaccines might be a cause of autism has received a great deal of attention from the media. Scientifically, the question has been thoroughly investigated and thoroughly discredited.
Legally, the idea has also been rejected. The Autism Omnibus case bundled the claims of almost 5000 children against the Vaccine Injury Compensation program. In the hearings for the first of three theories of causation, the lawyers for the parents and their children chose the strongest three cases to illustrate their claim that MMR vaccines and thimerosal-containing vaccines can combine to cause autism. On February 12, 2009, all three cases were dismissed. The decisions were scathing, stating that “the overall weight of the evidence is overwhelmingly contrary to the petitioners’ causation theories.” Moreover, parents were characterized as a “loving, caring, and courageous” family “misled by physicians who are guilty of gross medical misjudgment. In June and July of 2009, all test cases were appealed, and all three were dismissed.
The yahoo group “Environment of Harm” formerly “Evidence of Harm”, was established to discuss the book of the latter title, written by journalist David Kirby. The focus of the group is to discuss
“issues of government public health negligence and corruption and the various political efforts by parents to end the spectrum of epidemics that is being revealed as mercury poisoning, especially autism.”
From March 2005, the date of the book’s publication, until February 2009, when the Omnibus legal decisions were rendered, the group received an average of over 2000 posts per month. Since the rulings, the posting rate has dropped to only 800 per month, perhaps indicating that the issue is also losing momentum from a political point of view.
The mainstream media, the groups such as the AAP, and the blog sphere have also pushed back in an effort to educate the public on the harm done by the vaccines cause autism groups.
But behind the scientific and legal consensus that vaccines do not cause autism lies a hidden world, the autism “biomedical” yahoo- and chat-group world. There is no decline in the number of posts in this world. It’s a thriving, and growing community, one that has fueled the popularity of the anti-vaxers, and the certainty of those parents who consider their child “vaccine-injured”. It has spurred the spending of millions of dollars on supplements, hyperbaric treatments, off-label prescription medications, and myriad other autism “biomedical treatments”. These “treatments” are almost all of no proven benefit, some are ridiculous, some relatively benign, and many potentially dangerous. This article will explore the journey of one mother, “Mary” in her efforts to cure her son “Saul”. While the case of Mary and Saul, documented in her own words is shocking and appalling, Mary is not alone nor is she an extreme case. She is one of thousands of parents seeking autism “biomedical treatments” on the internet.
We first meet Mary in October 2003, when her son Saul (born November 2001) was only 22 months of age. She began posting on the group NLT (for a description of the yahoo groups discussed in this article see the section at the end). She stated that her son
“is basically non verbal. He said his first word, duck, at 7 months old. About a month later he said light, off , and on, but dropped duck. This set a pattern for him. Anytime he learned a new word he dropped any old words he had used at that point. Now, his only real words are Mama and Dada. He will on a rare occassion say car. He has had and lost about 20 words since 7 months of age.”
Shortly thereafter, he was evaluated by early intervention, and psychologist wrote PDD on his evaluations, along with the term Autistic-like. Mary was told that he was not autistic, but he’s autistic like. 10-20 hours a week of intensive in home therapy (ABA) was recommended.
So, Saul is a very young child, showing speech delay and signs of autism, evaluated very quickly, and almost immediately started on early intervention. Of course, Mary is understandably upset:
“I don’t know why I’m so upset. He (the psychologist) didn’t say anything I didn’t already know or suspect. I guess its just because my fears were realized. Rather than come in and say “oh no, he’s fine, he’s just a late talker” I heard what I was hoping not too. I’m sure that somehow to some degree this is my fault. Saul was such a quiet content infant, and he was content to play by himself as he got older I sort of went with it. I figured he was happy let me go do dishes, or laundry or whatever and let him entertain himself. Yeah that was great but now he is only happy by himself and turns in to himself and its my fault I know it is.”
Recent research (two links:here and here) has looked at the impact of parental acceptance of their child’s autism diagnosis. It was found that parents who do not come to a resolution (i.e. come to terms with and accept the diagnosis and its implications) find raising their child more difficult. In the case of Mary, we will see a real-life example of a mother failing to come to terms with her child’s PDD.
Here’s Mary again:
Thank you everyone for your support. I’m sorry I forgot to mention Saul’s age. He will be 2 at the end of the month.
I’m feeling a lot better but still overwhelmed. I want to read as much as possible so I can do the best to help him but I think I need a little time to come to terms.
A few questions though if anyone knows…Do kids diagnosed with PDD always end up as special ed or is their hope with therapy he main go mainstream. The reason I ask is that my cousin teaches 5th grade special d and the majority of her kids are PDD kids, and have been in special ed since kindergarten. What are the odds that my child will grow up, go to college and lead what is considered a normal life?
Also, I was reading about a special diet that gluten free that is supposedly helpful. Has anyone tried this?
Should I just go with the system for say 6 mos or so and see how he responds and progresses before trying anything different like diet changes or supplements.
Sorry if I’m asking a million questions. My brain is spinning and all the websites I go to just overwhelm me more. Everyone here seems to have such a wealth of knowledge, and more importantly personal experience and understanding.”
This message signals the start of a frightening journey into the realms of woo. The “treatments” inflicted on Saul are very painful to read. Mary joined numerous autism “biomedical treatment” yahoo groups. She is presently a member of all the groups in the box, see below (except EoH), and more besides. She has posted more than 3500 messages to these groups. Mary reveals her willingness to accept medical advice from strangers on the internet, and her trust in doctors employing “gross medical misjudgment”. Between the ages of 3.6 and 7.9, Saul has been “treated” with the following (in alphabetical order):
Acetyl L Carnitine –
acetylated form of L-carnitine
(quaternary ammonium compound biosynthesized from the amino acids lysine and methionine)
Actos (pioglitazone)
-prescription drug which carries a black box warning
Cal/Mag Butyrate – mineral supplement
Candex
– marketed as an enzymatic remedy to treat the yeast infection candida
Carnosine -amino acid
Chelation – process of removing heavy metals
Andrew Cutler protocol (at least 50 rounds)
DAN protocol for 2 1/2 years.
15 IVs of EDTA & Glutathione
5 IVs of DMPS and glutathione
5 combined IVs DMPS/EDTA/Glutathione
Chiropractic
Diflucan – prescription anti-fungal
Dimethyl glycine – modified amino acid
Enhansa – Enhanced absorption curcumin supplement
Epsom salt baths
Essential fatty acids
Flagyl (Metronidazole) – prescription anti-fungal
Folinic acid – modified folic acid
Folapro – highly absorbable folate
Galantamine
prescription drug used for the treatment of mild to moderate
Alzheimer’s disease and various memory impairments
GFCF diet – gluten-free-casein-free diet (3 years)
GFCF diet with digestive enzymes for infractions
HBOT
hyperbaric oxygen treatment
(Mary owns her own Mary owns a Vitaeris 320)
HLC MindLinx Powder by Pharmax – probiotic
IM Bicillin – prescription intramuscularly injected form of penicillin
Inositol – a nutrient
IVIG – Intravenous Immunoglobulin
prescription
used to treat immune dysfunction
contains the pooled immunoglobulin G (IgG)
immunoglobulins from the plasma of approximately a
thousand or more blood donors
Klaire Labs Detoxification Support and Factor 4 – probiotic
Liquid Bodybio PC – phosphatidylcholine with essential fatty acids
Liquid grapefruit seed extract
Low dose Naltrexone – an anti-opiod
L-theanine – amino acid
Magnesium supplements
MB12 – Methylcobalamin, vitamin B12 – shots
MB12 – Methylcobalamin, vitamin B12 – spray
Nicotine patch
Nizoral – antifungal
Nystatin – antifungal
OLE – olive leaf extract
OSR
(N,N’-bis (2-mercaptoethyl)isophthalamide,
also know as 1,3-benzenediamidoethanethiol)
an untested synthetic chemical
Oxytocin nasal spray
PCA-Rx – purports to remove toxins from the body
Phosphatidylcholine
Pro Bio – probiotic
Quercetin – antioxidant flavinoid
Reduced glutathione cream
Threelac -probiotic
Transdermal NAC (N-Acetyl Cysteine)
Valtrex (valacyclovir)
used to treat infections caused by herpes viruses
Vitamin C
Vitamin E
Zithromax – antibiotic
Mary has been tireless in “treating” Saul. But what about Saul? One would think that he must be very impacted by autism in order for her to go to these extraordinary lengths to cure him. Actually, no. He’s an extraordinary kid, and a wonderful one. Saul could identify all of the letters in any order and count to 40 at age 2.2. He started sight reading words at about 2.3 and at age 2.8 could sight read about 30 words. He started kindergarten in a segregated setting at age 4.9, , talked to the teacher, “he sat nicely through circle time, sat at his desk during class, and even raised his hand and answered questions. He was pointing to shapes on the wall and quizzing the teachers!” Here is Mary’s description of Saul at age 4.7:
“I woke up this morning and he was in bed with me. I’m not sure what time he came in because I never heard or felt him get into bed which is unusual. I woke up and felt him there. I rolled over and his little face was right there. He looked so peaceful and really has the face of an angel. I just laid there and stared at him for about 20 minutes. He yawned and opened his eyes. He saw me and his face lit up with a HUGE ear to ear grin. “Good morning Mom. Love you. Gimme a hug.” He gave me such a big strong hug. “Gimme a kiss.” I gave him a kiss. A second later his gears kicked in and he was off and running on full speed. After a few minutes he came back in the room and said “GIMME BREAKFAST! ! !””
But the “biomedical treatments” have not always been kind to Saul. Here’s Mary describing him at age 5.11
My son is on a ton of supplements. We haven’t really changed anything. Starting August 30, for three weeks we had to stop all enzymes, antifungals and probiotics in preparation for a endoscopy/colonoscopy. He is back on everything since he was scoped on Sept 20. Also at the beginning of August he had a high fever and a nasty rash that was diagnosed as Fifth’s Disease. I’m not convinced it was Fifths. He didn’t have the bright red cheeks and the rash was gone in 3 days.
After being sick he became clingy and a little whiny. In the past month its become horrible. I can’t even stand up without his whining “mommy..moooommmmmy, mommy will come.” I hear this the entire time I’m out of the room. Even if I tell him what I’m going to do and that I’ll be right back he continues saying it over and over. He whines over every little thing. Usually just lets out a big “WWWAAAAHHH” and it goes on and on. He cries over everything. He’s driving me insane. We are also seeing a decrease in spontaneous expressive language, asking repetitive questions, and repeating back questions instead of answering them.”
Nor have the “biomedical treatments” been kind to the family budget. In one message, Mary admitted that each month she spent $2800 – $3500 for IVIG, plus about $500 in supplements including the cost of chelation.
In a rare moment of insight, in May 2008, Mary posted:
“Sometimes I feel like a mad scientist and my poor kid is my guinea pig.”
Finally, a year later, she posted the preamble to this article (see box at top). How’s that “biomedical treatment” working out for you, Mary?
Such are the real costs of the anti-vaccination movement, the “biomedical treatment” internet groups. And the real costs of a parent unable to accept their child’s diagnosis. In her last message to the NLT group, Mary is still in denial about her son’s diagnosis:
RE: Sowell Traits
My son is 5 and is diagnosed PDD-NOS fits 7 of these to a T! ! ! The only one that doesn’t fit is # 7Makes me wonder what we are really dealing with.”
Thousands of parents are members of these yahoo groups. Once inside the cozy echo chamber of the group, there is general acceptance that vaccines cause autism. Members expressing opposing views are drummed out of the group. It is taken as an article of faith that there are children recovering from autism by the use of these biomedical interventions. The parents get poorer, the quacks get richer, and the innocent children are the victims of often dangerous and painful experimentation at the hands of the people who are supposed to care for them the most.
Some Yahoogroups
A-M – Autism-Mercury. Membership 8400, 2000 messages/month (archives public)
“To discuss current issues related to the increasing incidence of autism the potential link between excessive mercury exposure via thimerosal in infant vaccines. Topics include: mercury detoxification (“chelation”), mercury-related issues/news, and vaccination-related issues/news. Most members are parents of children with autism, aspergers, ADD, ADHD, PDD, PDD-NOS, SID, oppositional defiance disorder, apraxia, speech disorders, and/or other related symptoms. There are many labels: you are welcome regardless of particular label(s). In addition to mercury, we also discuss other heavy metals (for example: arsenic, antimony, lead). Many parents here are in the process of chelation, with a child. This process is discussed in detail. Also welcome: mercury poisoned adults; other disorders/issues related to mercury poisoning; other biomedical treatments for ASD.”
Comment: Primarily discusses Andrew Cutler heavy metal chelation protocol. This protocol relies on faux “counting rules” applied to hair testing to purportedly prove that people are “mercury toxic”. Andrew Cutler has a PhD in Chemical Engineering.
CK2 – Chelatingkids2. Membership 6600, 3000 messages/month
“This list is for parents and/or family members of children with autism who are seeking biomedical intervention, The main focus of treatment here follows the DAN! or Defeat Autism Now.”
Comment: Mercury chelation according to the DAN! protocol. This protocol relies on provoked urine tests to purportedly prove “mecury toxcicity”. This very active group has been recently closed to new postings for an unspecified period of time.
EoH – Environment of Harmformerly Evidence of Harm. Membership 2300, 600 messages/month (archives public)
“This is the Environment of Harm discussion list focusing on vaccine damage and mercury poisoning as it relates to autism. Of keen interest to participants are the issues of government public health negligence and corruption and the various political efforts by parents to end the spectrum of epidemics that is being revealed as mercury poisoning, especially autism.”
Comment: Politically active group originally supporting the autism is caused by mercury poisoning hypothesis, but now openly anti-vaccine.
GFCFKids– Membership 14000, 3500 posts/month
“The principle aim of this list is to provide a discussion forum for parents of children on the autism spectrum who are avoiding gluten and casein and other substances in their children’s diets. We hope that the discussions will include practical information and tips on following a GFCF(etc) diet; scientific research and opinion; the latest developments in understanding GFCF(etc) diet-related health problems; your personal stories and experiences with relation to GFCF(etc) problems; information on what food is GFCF(etc)and what is not; tips on how to eat out of the house; recipes and tips on how to cook and prepare GFCF(etc) food; what vitamins, minerals, herbs and other supplements may be appropriate for a child with autism, how to cope with difficult diet demands, plus support for parents.”
Comment: One of the largest “biomedical treatment” yahoo groups. While the GFCF diet has substantial anecdotal support, clinical trials have not shown any benefit. The GFCF diet appears relatively harmless, however, it can result in weakening of bones due to nutritional deficiencies. Moreover, it often acts as a first step on the path to more dangerous “biomedical treatments”.
NLT – NaturalLateTalkers. Membership 2900, 500 messages/month
“This list is a support for parents of latetalkers or speech delay with some or all traits of latetalker listed in the book Late Talking Children by Thomas Sowell. . . Here parents ARE and will be able to discuss their problems, concerns, and dissatisfaction with the over diagnosing done by various systems, such as speech therapists, doctors, schools, etc. Parent’s choice helping with speech through parent or another source is to be respected.” (sic)
Comment: This list supports those in deep denial about their child’s autism. While such support groups appear to be relatively benign, offering mutual support to parents of children with disabilities, they are often an entry point for parents to learn about the autism “biomedical treatment” and anti-vaccination movements. These groups are replete with examples of parents taking medical advice from strangers over the internet, many of whom are accorded more credibility than the medical professionals who have actually seen their children.
Left Brain Right Brain 
(sullivan’s edit–I changed the name to “jen” for this post. Jen, please stop posting under ‘guest blogger’)
Mmmm, if I’m a kid what do I want…list A (above the one the original poster used) or list B (below- vaccine ingredient list below)- insert Jeopardy music here – after a few seconds of deep thought…I’ll take list A, thanks!
Albumin, egg (ovalbumin)
Albumin, human serum
Albumin, or serum, bovine
Aluminum hydroxide
Aluminum phosphate
Aluminum potassium sulfate
Amino acids
Ammonium sulfate
Amphotericin B
Ascorbic acid
Bactopeptone
Beta-proiolatone
Benezthonium chloride
Bovine protein
Brilliant green
Calf skin
Chick embryo fibroblast tissue culture
Chick kidney cells
Chicken embryo (fertilized egg)
Chlortetracycline
Cohen-Wheeler, modified (pertussis component)
DNA
Ethylenediamine-tetraacetic acid sodium (EDTA)
Egg protein
Formaldehyde, formalin
Gelatin Gentamicin
Glutaraldehyde
Glycerin
Glycine
Human diploid tissue culture, MRC-5
Human diploid tissue culture, WI-38
Hydrochloric acid
Lactose
Lathinan medium derived from bovine casein
Linggoud Fenton media containing bovine extract
Magnesium sterate
Monkey kidney tissue culture, Vero (Vervet or African green monkeys
Monosodium glutamate
Mouse brain
Mouse serum protein
MRC-5 cellular protein
Mueller-Hinton agar medium
Mueller-Miller medium
Neomycin
Phenol
Phenol red (phenolsulfonphthalein)
2-Phenoxyethanol
Phosphate buffers (eg, disodium, monosodium, potassium, sodium dihydrogen phosphate)
Polydimethylsilozone
Polyethylene glycol p-isooctylphenly ether (Triton X-100)
Polymxin B
Poloxyethylene 9-10 nonyl phenol (Triton N-101, octoxynol 9)
Polysorbate 20
Polysorbate 80
Potassium glutamate
Phesus fetal lung tissue culture
Sodium acetate
Sodium borate
Sodium Chloride
Sodium hydroxide
Sorbitol
Soy peptone broth
Stainer-Scholte medium
Streptomycin
Sucrose
Synthetic/semi-synthetic
Thimerosal
Urea
Vitamins, unspecified
Watson-Scherp medium
Yeast or yeast extract (typically Saccharomyces cerevisiae)
Yeast protein
nicksgirl, having had a child injured by a real disease, I find your outdated list of ingredients silly at best.
(edit by Sullivan. The commenter’s name has been changed to jen)
Sullivan, please provide your source of “vaccine preventable diseases”???
(edit by Sullivan–the commenter’s name has been changed to Jen)
Chris, you consider Feb of 2009 to be outdated? And may I pry a bit…what disease was your child injured by and what were/are his injuries?
Everything is a toxin, even water. What matters is the dose. To say that vitamins and supplements given in high doses every day are not toxic is a bit naive and probably false. It’s also by no means “natural,” if that matters.
Are children injected with vaccines every day of their lives? That would be pretty toxic, but it doesn’t happen.
(edit by Sullivan–once more, I need to note that this was not by the guest blogger. The name has been changed to jen for this post)
And Sullivan…
right back at ya…
I won’t be scared of Epsom Salt Baths, b12, probiotics, chiropractic, GFCF diet, etc…all words I can pronounce with out help!
Speaking about vaccines and health related issues in general, I think there needs to be a balance. Currently, as it stands, there is no balance with the vaccines. The amount administered before age 2 is outrageous. There are things that on the list that are just not necessary. I think at this time in society we are relying way to much on science and not allowing our bodies to do what they were made to do on their own.
Joseph, I miswrote…children everywhere all over the world are injected with these nasty ingredients.
Where is their voice on that??? You all wonder how could “Mary” do such things to her child, her child not having a say. Well then, why don’t we have children decide if they want those toxins injected into them.
(edit by Sullivan–I have changed the name from “guest blogger” to jen for this comment)
Isn’t it kind of juvenile for Jen to be posting as guest blogger and other sock puppets? What, are you two?
And seriously, all those things you say you can pronounce have chemical names as well, because it turns out everything is chemical in nature.
There you go with more assumptions Kwombles
I’m posting under Jen and guest blogger because my posts are not going thru. So, I’m thinking the name needs to be changed, maybe one post per person…who knows??? Don’t know. But its not because I’m two. Thanks for the insult thou! 🙂
And I apologize you don’t get my sarcasm. I assure you I can pronounce all the words.
Kwombles…is it possible for you to have an educated debate without insults? Just curious.
(Edit by sullivan–I have changed the name for this comment to “jen” from “guest blogger”)
@ Sullivan: Please look at the last few posts with “guest blogger” as the poster. They don’t seem to be from the person who wrote the post.
Second, please let me say that vitamens and minerals are not “harmless”. Overdoses of the fat-soluble vitamens can be very harmful to a adult, much less a child. So can extended mega-doses of the water-soluble vitamens (I had a patient who developed scurvy when she quit taking her megadoses of Vitamen C while planning for pregnancy. Her body was so used to the megadoses.) Megadoses of the B vitamens can lead to nerve damage/destruction.
Certainly supplements should be given if, for some reason, a child can’t eat enough normal food to get the needed vitamens. However, megadoses are dangerous. Lactose-intolerant children should, of course, be tested and lactose removed from the diet. Calcium is available in other ways.
Again, and I, Kev, Sullivan, etc have said is many, many times. A child who is sick/in pain/allergic needs to have the problem treated. This does not cure the autism!! If the autistic behaviors decrease because the child does not need to communicate his/her pain through them, then everyone benefits.
Lastly, mary, jen,etc: You obviously don’t have any idea who has an autistic child on this board and what level of functioning the child has. Many of the posters have autistic children at various levels of functioning.
I’m sorry, where was my first assumption, lurker? If you think asking if you’re two years old because you are acting it is an insult, perhaps you should go read Thelma and Louise’s blog sometime. They’re working on something they’re calling inventive invectiveness.
And if you think you are engaging in an educated debate, I’m pretty sure that there are many of us here who would disagree.
If your posts are not going through, it’s because the system here is determining they might be spam. Watch the words you use, but please do not impersonate other people – it’s very confusing.
Again, saying something is “nasty” is meaningless, independent of the dose, because everything is a toxin. The vaccine ingredients you mentioned are injected in tiny doses. No one gets vaccinated every single day of their lives. More importantly, vaccine safety is studied.
Giving 20 supplements and vitamins to a child every single day is different. The doses are non-trivial. No one studies the safety of these sorts of made-up regimens. It’s just assumed they are safe for an indeterminate amount of time.
A generation from now I’d like to see how healthy the kidneys of autistic adults are.
Here’s a list of what some of these biomed treatments can do:
EDTA: Hypocalcemia, possible cardiac arrest
DMPS: NEVER approved for us in US do to fatalities in testing.
Amphotericin: Severe seizures, may also cause heart, liver and kidney damage
N Acetylsteine: Heart and lung damage as known side effects.
Another thing about these products: In many cases, they are produced by the same “Big Pharma” companies anti-vax groups are so suspicious of.
There is Guest Blogger (me, who wrote the post) and guest blogger (jen) who has a fondness for lowercase. You can tell us apart that way.
Guest Blogger wrote:
Dawn wrote:
I think I have changed all the false “guest blogger” comments to “jen”.
As noted previously “jen” appears to have a number of personas in this discussion.
I just still can’t get past the fact that someone has the time to sit around and read hundreds or even thousands of one particular person’s posts. what is it about this one particular mother over all the others on the list?
Seriously, don’t you have something more productive to do with your time? Play with your kids? Volunteer to help children with disabilities? Provide an hour or two a week for respite for a deserving Mom? Read to the blind or elderly?
You need a life.
This doesn’t address the point of this post. Even if all these support posts exist, it doesn’t mean that those highlighted in this post don’t exist, neither do they negate the wasted money, misplaced hopes and potential harm inflicted on a child because of a fatal trust in pseudo-scientific treatments. This needs calling out. It is clearly unacceptable for further vunerable people to be exposed to this.
I’d call the people who exploit parents and children vultures, but that’s an insult to vultures who serve a valuable role in ecosystems.
(edit by Sullivan–the poster’s name has been changed to Jen)
Kwombles…here is your 1st assumption…”This is a woman in dire need of intervention and a child who cannot be even remotely considered to be in a healthy, safe environment.”
You are assuming this based on a few posts from a yahoo group!! Have you evaluated the home, is the parent a drug-user, have you had a conversation with this person or child??
How can any one of you assume this child is being mistreated because you pulled a few of many posts by this parent?
All of these parents do these things because they love their kid and have hope.
I think you are being very heart-less towards a woman who, at a weak moment, told a group of people how she truly feels and how Autism is effecting her.
I’m sorry to read you don’t feel we are having an educated debate because I don’t agree with your opinions.
I wouldn’t have even known about your blog or group had it not been from your member who copied and pasted a mother’s words…just kick her while she’s down why don’t you. Maybe you should have your arguments without using people’s posts as an example for a bad parenting 101 and I wouldn’t have been even on this group.
I don’t agree with the ingredients in vaccines. I don’t do biomed on my child. I don’t have an Autistic child (although would have if I continued with vaccines). I do agree with homeopathic remedies. I do believe when it comes to a child’s health a parent should be able to have options.
But, like “Mary”, I have every right to have these opinions and shouldn’t feel judged or threatened for not not having mainstream views. I don’t think you are a bad parent for giving your child vaccines, I don’t think you are bad for not trying the diets and supplements…but that is your right as a parent. Understand I believe thinking out of the box might help a child who suffers from Autism. But, it is wrong to assume you are a bad parent because you don’t…you are being hypocrites.
Regardless, either way, this blog post is still ridiculous. It is not necessary pc of information and it is not moral to take this woman’s words and talk bad about her and the situation as a whole.
What you are all missing in this debate is:
WHAT WORKS
If biomed works or you see improvement in certain realms then you’re going to continue it. It worked fantastically for us. Whereas… ABA felt demeaning, the Ped Neurologists ideas were limited to the prescription pad which also didn’t work and had unacceptable side effects, and frankly the developmental pediatrician was so good at diagnosing but didn’t have any suggestions for remediation. Nobody sets out to spend all their money and time doing things that might or might not work but we are forced to because the medical community have been miserable failures at healing these children. And because I have one that is largely healed, I know its possible. Its a travesty that this mom is at this point in parenting and obviously having a very difficult time.
Frankly, “GuestBlogger” I find you more than a little Obsessive Compulsive for having chosen to spend so much time to meticulously compile this information and publicly attack this person. It feels like you want to annihilate and crush her, which makes me believe here in cyberspace either you are an angry, aggressive person or you have some other agenda.
And regarding the GFCF diet. Babe, you are way out of it and operating on your own edge of lack of knowledge. There is a stack of scientific literature available regarding protein and fat digestion and the ensuing inflammatory conditions associated with poorly digested amino acid chains leaking into the bloodstream. In fact the very latest research is pointing to this as possibly implicated in juvenile diabetes. The first thing my regular pediatrician told me when my child’s celiac test came back negative was, “ok, well its a known fact that some people who are not truly allergic with a histamine response are still able to mount an immune response to undigested amino acid chains. I’m a former genetics researcher, I read medical journals and you are poorly informed my friend.
Sorry, I am just laughing at you. You’re nothing but a windbag of opinions that are flapping in the internet breeze.
Anthony, what wasted money? Is it your money? Why do you care? I’d rather be living on the side of the road in a cardboard box with a child who I is either recovered, or who I did everything I could for, then sit back and say “it is what it is” while I live in my nice house, wear nice clothes and drive nice cars.
If you’re not paying the bills, it’s none of your business what people spend their money on.
I know “Mary” through email. Guess she can’t be too broke,she’s taking “Saul” to a U2 concert tonight because he loves music and live shows. Anti-terrorism warnings are saying to beware of stadiums and entertainment complexes. Guess she is potentially inflicting harm on her son by putting a fatal trust in pseudo-security officers too
LOL
You know, jen, lurker, whoever you are, if you did’t contradict yourself so many times in that last post, it might be worth it to hash it out with you. But it’s not. You’re just getting your jollies off, aren’t you? Oh, but there I go, making assumptions again.
pD – “By the authors own admission, the person in question has over 3,500 posts; yet we are given a select sampling of seven, over five years of time to paint the picture before us.”
I agree, it would have been much more effective to have pasted all 3500 posts… IFF effective = useless. What happened to the old pD who used to be relevant and even insightful? Is that troll jen using your screen name too?
I thought this post was a fascinating glimpse into the world of one of the victims of the vaccine scare. The way these people are manipulated and exploited is just shameful and – IMO – is a bigger deal than whether infectious diseases take off a little bit.
No surprise that the anti-vax haters start swarming in the way they have.
Any moment of truth sets them off.
This anonymous blog is both misguided and misnformed. What is this person’s agenda for criticizing parents for trying to help their children? In working with my own child’s PDD, I’ve come to realize that the conventional wisdom of the established medical profession, which I suppose this anonymous blogger supports, is that we should not try to investigate the cause of the problem, so as to try to cure the problem. Rather, we just manage the problem. I find it mind boggling that doctors would not be the first to ask, WHAT IS THE CAUSE OF THIS PROBLEM? And after having done sufficient research with an open mind, I’ve concluded that children are intended by nature to be neurotypical. If they are not neurotypical, there is a CAUSE. That CAUSE could only be either genetic, trauma or environmental (e.g., toxicity), or some combination thereof. So every effort should be put into identifying the CAUSE so that a CURE can be found.
Also, this blog conflates and confuses two separate issues. One is whether vaccines are causative of autism. I do not know and the issue should certainly be further investigated. The other is whether autism has a cause. I do not need proof to know that if there is a EFFECT (i.e., autism), there is a CAUSE. Identifying the CAUSE will be the way to heal our children. This blogger is an idiot for suggesting, with much effort expended in the process, that parents of children with autism should not try to find out the CAUSE of what ailes their children.
Stacey, you are incorrect: far from being unproductive, Guest Blogger’s effort in exposing the full array of “treatments” inflicted on a single autistic child is extremely important. We often hear about parents trying this or that, but rarely know what else is being given at the same time, or how far along they are in a string of failed “therapies.”
Who knows what effects these unregulated products have? Have they been tested in combination? Has their purity been certified by a trustworthy agency? Who is looking out for the children who have no choice in this matter? Guest Blogger is doing what she can. I appreciate it.
The money that could be spent on living a normal life rather than funding the lifestyles of quacks exploiting parents and children. Earning money also diverts time and effort from parents.
I care for two reasons:
1. The same reason I care about frauds ripping people off in financial scams.
2. Because the money is funding an industry which is undermining the health of other children because of its dependance on peddling mythical vaccine scares.
Thank you Guest Blogger for clearing that up…I do not want to be confused with you.
And Joseph…I did not intentionally try to impersonate anyone. And the words I was trying to use, when I had difficulty posting, were vaccine ingredients. No foul language here…or wait…I think I may just consider vaccine ingredients to be foul.
We could sit here all day…I could have a full one war of words and documents that don’t agree with what you are saying but that is off subject.
And Dawn, my son, prior to being GFCF, had test, after test, after test. The last test, the one that broke me down, was the scope…or $6000. Endoscopy. As they pulled him from my arms, my son screaming for me & holding his arms out I cried. I was so distraught. They put him to sleep and put a tool down his throat to see what was going on. The biopsies, the scope, the countless blood tests, the allergy tests, the drugs…everything was negative. The doctor who preformed the endo test wrote in my son’s lab results that “the mother is confusing bad behavior with allergies because I see nothing wrong with this child”. But he sure didn’t have a problem taking us for $6000!!!
Three days after the gfcf diet…new child. The ones who supported me and told me how to help myself, learn how to cook gfcf, and find ways to keep my son healthy & happy were those from yahoo groups with vaccine-injured children.
Just like I can’t say that because of a bad experience with one doctor all doctors are bad you can’t say that just because one parents are doing biomeds that it is a unnecessary treatment.
My son’s ped had him on a Zantac type drug when he was a baby for almost 5months. After I realized it was making my son worse & I researched the drug I threw it in the garbage. Yes, too much of anything is a bad thing. And in regards to your comment about what that one time you saw someone who had too many vitamins it made me think about the many kids on ADHD drugs who have been on them from age 3 to age 14 have died or those who’ve survived have organs like 80 yr olds. But big pharma says those drugs are safe. Guess we should just trust them.
Does typing CAUSE in capitals give it special meaning?
Really? Nature wants children to be neurotypical. I see.
So a child with Down Syndrome or Angelman’s is really not as nature intended. Genetic mutations apparently are not something nature wants.
As someone with an “open mind,” can I assume you’re reconsidering your position?
you people are silly! i only used different names cause the posts weren’t going thru. i didn’t understand what i was doing wrong. i thought maybe posts were limited per person…i’ve never been here before.
Ed,
It is very clear from reading “Mary’s” posts that she believes autism is caused by vaccines. That’s why she embarked on chelation (to remove the mercury). And why she embarked on IVIG, because her kid is supposedly a “viral kid”. She didn’t try to figure out the cause, she assumed a cause and went from there to try the frightening array of “treatments” in the big list.
It is anti-vax movement that provides the motivation for these treatments.
Anthony what is considered a normal life? Two relatively new vehicles, a house that is almost paid for, a pool, a playset that puts any public playground to shame, a huge water slide, bikes, scooters, trips to Disney, Sesame Place, seeing the Wiggles and Laurie Berkner in concert, wearing new brand name clothes??? A Stay at home Mom?
“Saul” gets that and more. Dad probably pays more in taxes than you make in year.
Oh and Anthony…vaccine scares??
Here’s my scare…
My son, totally neurotypical, very social, great language, great imagination, life of the party type of kid. Got his first flu shot at 2 years old. Was supposed to get 2 for it to be effective. Within 12 hours of the first one he had a 104 degree fever, vomiting and a full body rash. Of course he wasn’t himself for the first 2 or 3 days not feeling well, but he was never himself again. He stopped talking, he limped off his left side, started staring blankly out windows, stopped answering to his name, night sweats, drooling, forgot how to chew and swallow, and went from having normal formed brown poops to having chocolate pudding run out his butt all day, uncontrollably for almost a year. We could barely leave our house unless it was for emergencies or doctors visits.
So for us,and many others, it’s not just a vaccine scare. My son was damaged by that flu shot in more ways than one. And guess what….my mainstream modern medical professional insists there is no connection.
A normal life would be paying for treatments that evidence they work, and using the rest of your resources to care for your family – rather than to finance the families of those ripping you off.
Good for Saul, but I’m sure there are other families who do make sacrifices.
That’s because there isn’t one.
Ok, so you are Sullivan and you are Guest Blogger?? So you are using two names??
Man, what a waste of a day for me. But I just couldn’t sit back and let Sullivan and/or Guest Blogger rip this poor mother to shreds for trying to do the best she can for her kid.
Jen,
if you weren’t so busy posting under multiple names you would be able to keep “Guest Blogger” and “Sullivan” separate. Very clearly, we are different people.
anon posters – please feel free to comment anonymously but retain just ONE username. One person posting under multiple usernames will be considered spam and deleted.
“jen”, any vaccine ingredient list with thimerosal is outdated in regards to pediatric vaccines. Also, it is interesting that you chose to keep sodium chloride on the list.
What does it matter what disease injured my child? The fact of the matter is that the diseases are far more dangerous than the vaccines. But I realize trying to explain or discuss this with someone who uses sockpuppets would be waste of time.
Hmmm, speaking of chicken embryos, I think I’ll have some for lunch with some sodium chloride.
isles
that is our exact arguement for vaccinations! they have never been tested in combo, or many at all! or combo of ingredients, metals plus live viruses (they are not it the same vile) my son had mercury vaccinations given WITH Live virus ones crashing his system while given a glutathione supressent in tylonal (which I was advised to give by my dr) with the vaccination shutting down his ability to detox the metals while trying to fight a live virus while reaction to components in the vaccine my child was allergic to. ever test??? nope! the irrony is that a child in the same town was given at the same place the same combo and got an infection so bad he had to have his leg removed from the knee down. several other kids died with in days of the same batches and yet 11 developed seizer disorders. were any of those vaccintes pulled, batches distroyed, recalled NO, but if it’s a swollow hazard for a toy or a few kids pinch a finger you better believe it!
and for those uneductated on vacciation there is STILL mercury in vaccinations, INCLUDING the new upcoming flu shots and mist for H1N1! read inserts. there was never a pull out date given for mercury just a “soft suggestion” to do so. it’s never been a mandated things. AND when people do stop producing ones with it things are still on the shelf with a long shelf life and dr’s don’t just throw them out. my son was born in 2001, and in 2003 was getting ones with mercury still in them
Christel King – actually vaccines are tested in combination. See this post for full details.
Guest Blogger you are wrong!
“It is anti-vax movement that provides the motivation for these treatments.”
Please don’t put words in parent’s mouth and make assumptions on what motivates a parent(s). I know for a fact, it is the love and hope they have for their child that provides the motivation for these treatments.
Most of these parents are only anti-vax because their child was injured from a vaccine. No parent wants their child to get sick, no parent wants their child to have issues in any way. It is because they believed mainstream med and because they followed guidelines set forth that got them their child in that position. They did what they were supposed to…they got their child the jabs and they lost their trust in big pharma and mainstream med.
And how could you discount all the parents who have stories such as “my 12yr old child said their first word after 3days of being on the gfcf diet”. There are sooo many parents with those great success stories all over the world…how could totally discount those stories??? How can you explain Homefirst clinic??? They are vaccine-friendly, meaning they don’t push either way and they feel it important its the parents choice, look them up. Over all their patients, all their years of service they have had 1 case of Asthma and NO cases of Autism with their non-vaccinated children. How is it those from the “Quaker” community have only had 1 case of Autism…a child they adopted from China.
Please give me a scientific explanation of this???
“How is it those from the “Quaker” community have only had 1 case of Autism…a child they adopted from China.”
You are mistaking the “Amish” for “Quakers”. The Amish story was propogated by Dan Olmsted, who didn’t check with the cryptically named “Clinic for Special Children”, who have cared for and reported on autistic Amish children.
Another point Mr. Olmsted missed was the fact that the Amish do, in fact, vaccinate. The vaccination rate amongst the Lancaster County Amish, whom Mr. Olmsted supposedly investigated, has increased dramatically in the last 15 years.
The story is much stranger than Mr. Olmsted knows.
And yes, Christel, that was a poke at the antivaxer movement. You *almost* got it.
(PS – there is no thimerosal in FluMist – it’s a live attenuated vaccine, thimerosal would ruin it)
kev taking me to another blog with snips of peices dosn’t back your claim, the goverment itself acknowledges it doesn’t test them together AND by the way did you know that on april 1st of last year I believe the AAP backed the diet and suppliment use and exploration and encourage dr’s to be trying and looking at those items helping families. they even had a rep come to the DAN conference to learn and hear what us parents are seeing!
The AAP did not “back the diet” or supplement use. The AAP did open talks with DAN/ARI to discuss what they had to say, but the AAP have not stated one way or the other about the DAN/ARI approach.
Dear David Brown: you said…
“Here’s a list of what some of these biomed treatments can do:
EDTA: Hypocalcemia, possible cardiac arrest
DMPS: NEVER approved for us in US do to fatalities in testing.
Amphotericin: Severe seizures, may also cause heart, liver and kidney damage
N Acetylsteine: Heart and lung damage as known side effects.”
Here is a list, for example, of the MMR side effects from the CDC’s site…
Mild Problems
* Fever (up to 1 person out of 6)
* Mild rash (about 1 person out of 20)
* Swelling of glands in the cheeks or neck (rare)
If these problems occur, it is usually within 7-12 days after the shot. They occur less often after the second dose.
Moderate Problems
* Seizure (jerking or staring) caused by fever (about 1 out of 3,000 doses)
* Temporary pain and stiffness in the joints, mostly in teenage or adult women (up to 1 out of 4)
* Temporary low platelet count, which can cause a bleeding disorder (about 1 out of 30,000 doses)
Severe Problems (Very Rare)
* Serious allergic reaction (less than 1 out of a million doses)
* Several other severe problems have been known to occur after a child gets MMR vaccine. But this happens so rarely, experts cannot be sure whether they are caused by the vaccine or not. These include:
o Deafness
o Long-term seizures, coma, or lowered consciousness
o Permanent brain damage
This is so tit for tat! Everything could have a negative. Those parents are willing to take the risk using biomed treatment to reverse just as you are with your child when you take him/her to get the MMR or any other vaccine to “prevent” an illness.
Christel, of course they are tested in combination. It would be patently unethical to do a vaccine trial in which the subjects were required to forgo the protection of recommended childhood vaccines. Therefore, every participant in a trial of a new vaccine has also had all the other vaccines recommended for him or her, and the studies specifically look to see whether the use of the new vaccine interferes in any way with the action of the others. Of course safety is also examined; this is true at every stage of the clinical trial process.
The American Academy of Pediatrics does not condone the use of restrictive diets for autistic children. In fact, studies have indicated that autistic children are at elevated risk of dietary insufficiency, possibly due in part to dietary restrictions imposed by well-meaning but misguided parents.
It’s ironic that when the Academy attempted to show good faith by attending a meeting of activists who are dedicated to discrediting the Academy, its attendance was (and is) cast as an admission that the activists are correct. Is this how your movement plans to build constructive relationships going forward?
Exactly the same way I discount Victoria Beck’s story that her son started to speak shortly after receiving secretin, or Michael Menkin’s story about a girl who started to speak after 3 months of wearing his thought screen helmet.
Also, I don’t think there are too many stories exactly like that. There might be a few.
self abuse – solved with removing milk
seizers- stopped by going gluten free
cronic 3 years of diareh- solved with enzymes and suppliments found to be necessary on biomedical testing
lack of feeling of pain and pressure- solved with zinc and vit C
immune system irregularities- solved with LDN, DMG, and a few other suppliments
PANDAS – fought with natural OLE and antibiotics (compounded)
cronic yeast infections causing rashes, break out, leaky gut, and part of the cronic diareah- cured with LDN and antifungals (fluconizole, caprilic acid, garlic, oregano, biotin)
skin rashes- cured with taking milk out
thyroid issues- solved by selenium (with backed up testing of 6 years now showing it’s effectiveness)
ecoli bacteria issues- taken care of with probiotics
measels GIVEN from MMR taking root in gut with off the chart titers from cronic infection- fixed with vit A and LDN
cronic ear infections- solved with taking out milk (*8 ear infection 8 months in a row started at 6 months old-14 months from a crashed immune system from 6 month old shot)
milk is taken out for several reasons- allergies (IGE) intollerences (IGG issues) and opiates.
my son would have an infraction and actually walk into walls like they weren’t there in a drunk effect before taken out and with each infraction we would see this! given us our cause and effect
gluten (*wheat, barley, rye and oats)taken out for celiac reasons (many kids find out it runs in the family through stumbeling across autism diets) allergies (IGE) intollerencres (IGG) and opiates as well as seizers. 30% of autisic kids have seizers, a large group find out they are gluten triggered when going on the diet and they disappear. with infractions they see it return. our son seizers just touching a sticker back! 10 seconds later seizer. we have had this witness by dr’s who don’t even belive in biomedical
Joseph, you don’t *think* there are too many stories but I assure you I’ve heard them all and read as they were compiled and came together. Again, all over the world similar, if not the same, stories are being said. Its just a diet change…what’s the big deal??? What are you all so scared of with diet changes?? You should leave that out of your arguments. Most, if not all, children on the spectrum don’t have a big appetite. But from my observation their appetite greatly improves once diet as started. I really can’t see how one could argue that their are nutritional deficiency’s on the gfcf diet. As far as I know that is seen prior to starting the diet.
Two brief points:
1. I don’t actually believe that vaccines caused my son’s autism, have never been attacked for this position and am a believer in biomedical. I think autism is likely a genetic disorder that is a part of not the definition of my son.
2. We take the low, slow, cautious approach to all interventions, including therapy. We have seen incredible, small changes in my son, including going from 2-3 word phrases to full stories about his day; an increase in eye contact, a decrease in stimming, the end of a bloated, buddha belly and gas that could clear a room.
Let me be clear: biomedical, to me, is about healing the body so the child is able to function at full capacity. It is not about “changing” him into someone or something he is not.
I fully accept my son for who he is, where he is. Of course I want the best outcomes for him. I also want the best outcomes for my other child, who does not require biomedical but certainly has found that eliminating dairy and increasing certain vitamins has completely resolved his eczema.
I wish that we could stop arguing about biomedical vs ABA and see that there is room for both.
joseph there are thousands of stories like that, kids making changers and BOOM! many with documention from non believers such as yourself that can’t deney it after seeing it with there own eyes. just cause a tree falls and you aren’t there to see it,doesn’t mean it didn’t fall
“joseph there are thousands of stories like that”
There are also many, many stories of children going through very bad adverse reactions to biomed. These are often explained away as “die off”.
Can you point me to the contact person at DAN or another organization who is keeping track of the adverse reactions? Who can tell me the odds of a child having an adverse reaction?
One of Jeff Bradstreet’s patients had a bad reaction to chelation. This was discussed under oath at the Autism Omnibus Proceeding. Can you tell me what test can be done to insure that a child doesn’t regress like that child? Can you tell me what the odds are of a child undergoing such a regression or other adverse event?
The answer is no. No one knows. No one is keeping track. No one is reporting adverse events.
Mich, where was there an argument between biomedical and ABA on this thread?