“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 
Adverse events reported during post-approval use of Tripedia vaccine include idiopathic thrombocytopenic purpura, SIDS, anaphylactic reaction, cellulitis, autism, convulsion/grand mal convulsion, encephalopathy, hypotonia, neuropathy, somnolence and apnea.
No one is trying to have it both ways.
The people here want the research to back up what you say. That means using the research to actually back up what you say, not just cutting and pasting.
As to 9-months ago? The initial thread is the second result on google. No excuses there then.
“you attacked a fellow mom”
I did no such thing. Retract that accusation.
As an aside, the fact that she is a ‘fellow mom’ is irrelevant to whether you should defend her. She has no right to be immune from criticism, so if you know where GB has lied, then correct him/her and show how.
Joseph if you look at ALL the statement you would see that it IS
informative, the dr admitted they don’t test to that sensitive to a level!
(at the hospital) and took responsibility stating we had done a QUALITY
test through great plains and was happy we had seen results when treating.
the sad part is because were poor and on the state funding they wouldn’t
cover that quality. by the way now that are are better in a financial
status our bluecross blue sheild that we are paying for DOES cover them.
gotta love how money talks hum!
“Surely, if there are thousands of stories of clear benefit from the GFCF
diet or something else, there should be some published case reports we can
evaluate. Let’s see them.”
there are 10,000 plus on the groups that have been talked about here! the
voices are getting louder on there benifit., stick around a few decades and
you will hear more and likly see them start to get perscribed in dr’s
offices as more and more benifits are seen from more and more families
hearing and seeing the benifits. in our school our son went to at 4 we were
the only family doing the diet,. (all ASD familes) our son soared through
materials that others weren’t and they were having to WRITE stuff for him to
where he grew out of the schools ability to keep up with him. teachers and
therapist pulled us aside saying they could tell we were doing something
different and wished more families would give it a try. mainstreamed school
same thing, in home therapist same things. they would actually hand out our
number to encourage families to get in touch with us after watching our son
make great gains while other families just snailed along. we actually had
the ped that GAVE his vacinations that wrote us off at first (saying he is
boy he will talk eventually, he is just distracted by OTHER skills he is
gaining the lang hasn’t really disappeared ect) call us after he got dxed
when we change to another dr, appologizing and asked us to come back to his
practice. he READ the book that changed our life, (by the way he also
DELIVERED OUR CHILD) and saw him disappear ect.n he fought the hospital to
give his allergy shots, worked with our DAN long distance, fought for the
b12 shots for us with the state and the secretin shots ect. he learned
through our son after that instead of writing us off, and gave families our
name as well after they got dxes for us to offer hope instead of a just put
them in an institution speech the local nuro gave families like ours. he
himself called us when HIS kid had issues and colic and we helped him figure
out a milk allergy for his own son….. like I said we have taken
UNBELIEVERS and turned there head by them KNOWING us, and seeing the gains
in our son with doing biomedical,. instead of them running, they have
imbraced as there heads have turned seeing amazing things. our therapist
NOTED all the changes in our son in just 2 weeks time of going on diet. 2
of them unbelievers before us as well. our son by the way at time of dx we
were told he would never talk again and he was soooooo sever and violent
that were suppose to pad the walls of his room, take out all the toys only
leave a matress, and just put food in his room 3 times a day and have a
helmet on him 24 hours a day to prevent him from self induced brain
damage…..NOW with biomedical – in mainstreamed 3 grade (has been for 3
years now) enjoying normal life moments, plays with his toys, loves
interaction and being social, has dreams for his future to be a builder, a
preacher, ect has a girl friend he says he want to get married some day and
have kids ect. all things we lost with autism that are now back thanks to
LOTS Of work by mom and dad, and biomedical and dr’s believeing in us as we
went on our journey and lots of research on our sons medical issues and what
things can help. not ALL biomedical either. we did ABA, ST, OT, PT, DT,
antibiotics, antifungal, secretin, LDN all being medical scripts from DR’s,
MD’s BUT all the therapist who worked with him before and after BIOMEDICAL
said that they saw massive differences. we were NOT making gains with ABA,
and DT and ST prior to biomedical. Biomedical allowed him that luxurey to
process and make gains in those areas when coupled with them
risks for vaccine and getting the disease are ruffly the same! that’s the
point
see you have yet to prove how “saul” is suffereing. sounds like he is doing
better from what he has done! his quality of life is better. in that 2K
would be food, qualify food, so your right KRAFT isn’t getting rich! haha,
the people growing healthy food, with rich nutrients are paying paid for
their quality, and the dr’s aren’t getting rich because he is healthier for
it. swithcing our diet for son took us from 200 a month for food to 800.
and that was when it was just 3 of us. with 5 of us it’s closer to 1200 now!
those pasta roni’s and cans of soups and spegettio’s sure are cheep but no
nutrients, soda and koolaid cheep, not like the quality juice they now drink
with out all the toxins in it! the rich in quality flours we now cook with
and milk alteritive that are healthier then cows milk (which by the way
aren’t meant for you anyway….moooooo) the higher quality oils we cook with
instead of non food grade stuff Mcdonalds uses or crisco wants you to think
is ok to throw in your pies and frostings! hehe. our DAN certainly isn’t
getting rich on us! he has recovered his own granddaughter. he is in it for
all the right reasons! compassion on families fighting the good fight to
give their kids the best chance at life! in those numbers are also likly
therapies that insurences SHOULD be covering like ABA, OT< PT< ST< DT. or
b12 or other therpies shown to be effective. but hey it’s going to take
time for “those dr’s and insurences” to see the benifit as a whole. you
don’t see fat kids on biomed! you see healthy ones. can’t say the same for
others. biomedical is shown us how to be healthy livers, instead of living
for the moment of just pleasure with out thinking about what those things
are doing to us. my son thanks me for the route we have taken, HE realizes
it’s done him well. and he is 8. he will tell me if we have forgotten his
suppliments. he can tell he feels “off”. I know adults on the specturm
doing biomedical that can testify to it’s benifit as well
heck NONspecturm people to4
I have done the diet and suppliments and warded off GRAVES disease that
isn’t suppose be reversable. we floored our mayo trained dr with it.
selenium reversed it. I even let him test me 4 years out as he couldnt’
believe it every few months as he waited to throw it back at me saying it
wouldn’t stick!!! undone hypoglycemia, fibro, and skin disorders…..it’s
not just autism it helps baby…..it’s all about restored health, not autism
viral die off can flare yeast issues which also confused often as die off.
this is seen with valtrex, addressing the yeast issues solves this
GI speicalist Dr Buie has great things to say and actually recommends diet
to help autism and kids with GI issues, (works for Mass General Hospital,
trains other hosptials around the country because of what he is seeing as a
pattern and trend on scopes of this group of kids, works for westle hospital
and for LADDERS) the reason much of this is recommended is because of the
commonalities of medical problems IN our kids with autism, not BECAUSE They
have autism.
wow really a pork pie compairson! bad part is they have VARS showing LOTS
Of data of reactions! reports by dr’s AND parents for decades! AND it’s
even now been put on lables as a side effect……AUTISM hum……makes you
wonder!
donn’t bash for your choice! i have done the research as I had to make
choices for my 2 daughters after watching my son desolve into ASD. we
decided to wait for my daughter and do actually allergy testing BEFORE
vaccinating before making a choice. we found out after vaccinating our son
had an anaphatic allergy to eggs, was lactose intollerent, and allergic to a
few other things. and I didn’t relize before vacinating him that he had
glutathione issues and liver issues as well (although it’s debatable that
those CAME from his vacination damage as well) bad set up! I asked for
testing after bad reactions at his 6 month shots and was brushed off by our
regular dr being told they couldn’t be tested that long. found out after
the fact they could indeed be tested! we tested our daughter at 1 and sure
enough anaphatic to eggs and peanuts. based on that and a mild milk allergy
she was never vaccinated. has mumps titers anyway! and broke out, it was
no big deal and not scary like everyone would make you think it would be.
3rd child also anaphatic to eggs. so not vaccinated. I have issue on a
religous view as well with aborted fetus tissue being used. so wouldn’t do
them based on that. you don’t have issues with those things great! vaccinate
your child. I would be happy if we got chicken pox to be honest and have
immunity to it! I think it’s crazy we are vaccinating against it. now we
set our kids up to get it later in life when its more deadly! and the
studies are showing it wears off after like 5 years. creating more mess.
lets go back to chicken pox party’s!!!!
no you have that so wrong, people don’t just say bad vaccines made by a big
company so i hate them, and then safe biomed because of small company!
people end up biomedical because they have been ALREADY harmed by mainstrem
meds, and don’t trust dr’s because they hurt our kids when we trusted them
to start with, wrote us off when we had concerns with our children and
pushed us off when we said we are seeing concerns and they keep saying oh
your child will just talk later, no big deal, or kids don’t just loose lang,
or they are boys they will just talk later, or all kids flap and walk on
their toes ect/…….
the mistrust IS there after seeing that someone has an adgenda to make
something off you and your child going this direction and that is why they
have an interest for you to keep going that direction. it is true that
going biomedical no one is getting rich off your kid.
side note – our DAN IS a medical dr. (both of them) MD’s one an immunologist
and the other a family dr. both supporting our direction and choices. we
have done our testing through them, suppliments through them, scripts
through them, and there have been things that didn’t work, we move on and
try other things and find those that do and then keep going.
“taking and extracting 5-7 peices of 3500 emails posted to a group over 8 years, where a mom was reaching out for help and felt safe to put her vulnerablity and deepest emotions out to and allowed to be real in vulnerable moments isn’t very good technique, nor is it very considerate either”
This would only apply if the posts chosen were not representative. There is nothing in the posts that does not appear representative, in fact they seem to have been chosen very well as the contents appear to fully jive with GB’s interpretations and allude not to one off things but persitent patterns of
As Mary was deliberately not identified, nor does she appear to be identifiable unless you already know her, and all postings were as properly attributed as could be under the resrictions, accusing GB of a lack of consideration seems a bit weak.
It’s not what I would do, but that’s not an objective arguement.
deji
“No one is trying to have it both ways.”
sure you are! posting what backs what this mom is doing, and other biomed moms….about nutrition, diet ect.
“The people here want the research to back up what you say. That means using the research to actually back up what you say, not just cutting and pasting.”
you can kill 2 birds with one stone
“As to 9-months ago? The initial thread is the second result on google. No excuses there then.”
again no need to read a discussion I wasn’t part of 9 months ago. i’m here not there
“I did no such thing. (attacking a fellow mom) Retract that accusation.
this peice absolutly DID attack a fellow mom, calling her abusive to her son, wasting money on things not helping ect…..making her look like she didn’t research these things, and is hurting her kid which isn’t the truth at all……twisted words and view
“As an aside, the fact that she is a ‘fellow mom’ is irrelevant to whether you should defend her. She has no right to be immune from criticism, so if you know where GB has lied, then correct him/her and show how.”
GB?? so is this blogger going to come and put there name to slander of this mom or afriad of the backlash? again slander with out knowledge! you don’t read a persons messages on a group and pretent to KNOW what they do daily! or take weak moments and exploit them, this blogger cut and paste yet studies can’t be! REALLY!!! talk about unbalenced! jumping from a mom giving medical treatment, nutrients ect to abuse is a BIG jump!
Read more: https://leftbrainrightbrain.co.uk/?p=3144#comment-64392#ixzz0RzEJ4ALx
What I find so sad and disturbing about this blog/post is that “Mary” and her son are being used by this author to attack all the parents and families that are on the Biomedical discussion groups that he lists. Guest Blogger is basically saying that they are all crack pots and that they are all harming their children. This is simply not true. Some of them have used only one or two of these treatments and found huge successes with them.
Whether “Mary” did the right thing for her child or not is not any of this man’s business, nor is it mine. What we should really be being debated here is this…
The actual debate is about concerns in regards to the efficacy of Biomedical Treatments and that of Standard Medical Treatments. It is unfortunate that he is taking one individual case of biomedical treatments and applying it to everyone on these sites and I think that is why so many are upset about it.
I find it offensive that the Guest Blogger has used this woman’s story of her personal struggles with Autism and her son to define the rest of the families on these group sites.
Did he not get one good bit of helpful information from these sites in the six plus years he has been lurking? Does he really think that all of them are throwing every conceivable biomedical treatment at their children with no respect for their health and safety?
“Mary” obviously did the best that she could in a very difficult situation. She is not perfect and neither is the Guest Blogger, as a matter of fact none of us are. I will not debate either of their personal choices or how they chose to help their own children.
Each child is very different, each child has a different set of circumstances that lead their parents to either biomedical treatments or the more standard medical treatments, or both, each child probably has a different set of diagnoses.
Who is this Guest Blogger to say that these groups are encouraging people to abuse their children? Who is he to say that biomedical treatments don’t help some children? Who is he to say that they are all harming their children and that they are all suffering at the hands of their parents and that they are child abusers? That is like saying if you own a medical dictionary and you read it you are illegally treating your child without a medical degree.
Just because they belong to a discussion group doesn’t mean that they are in a cult or something, they all have free will and can use their own mind and personal experiences to guide them in their own journey towards helping their children. They are there to learn and to ask questions and gather information that might prove helpful to their families.
If he was a smart man he would have said that some people take many types of medical treatment too far and that we would be wise to make sure that we were careful and researched our choices before treating our children. Singling out one individual and making a point that all the parents on these sites are harming their children is unfair and not true.
I am a responsible parent, I took my daughter to the pediatrician, she got all her vaccinations, she went to the optometrist, the psychiatrist, the neuropsychologist, the speech therapist, the occupational therapist, the best medical hospitals in the country. I took her to the speech pathologist and the psychotherapist. I love her and accept her for who she was and is. My daughter has had all of the modern medicine I could find and we did all of that, for 14 years, I believed in the MD’s, the PhD’s, the whoever’s of the modern medical world. It didn’t help. It made things worse. I know because I was there. I lived it. My child suffered because of it. Not because of biomedical treatments, but because of some doctors who practice “modern medicine”.
I gave her the all “modern medicine” medications that were supposed to help her, unfortunately for us they caused her to have life threatening seizures, immune problems, rashes, blood sugar problems, huge weight gain, sleep disturbances, anxiety, depression, hallucinations, tremors, tics, chronic yeast problems, digestive problems and nightmares. I know this because they happened to occur while she was taking the medications and they were listed on the side effects/adverse effects warnings and they subsided when she stopped taking them.
These lovely side effects/symptoms led to more behavior issues, educational issues, bullying, low self esteem, learning disabilities, balance and muscle deficits, loneliness, suicidal ideations, sensory problems and more. I trusted the doctors, I trusted “Modern Medicine” to help my child get better. It didn’t work. It harmed her further. Regardless of what caused her issues to start with, she was damaged further. These doctors that practice modern medicine don’t usually do tests to check the levels of the Serotonin and Dopamine before they give your 5 year old child Seroquel, Stratterra, Wellbutrin, Abilify, Prozac, Catapress, Concerta or Cymbalta. They don’t test for it, but they could.
So, Guest Blogger I ask you… Why not? Why don’t these doctors of medicine test my child for serotonin and dopamine levels, thyroid disorders, liver function and blood sugars prior to, during or after they prescribe these very harmful (untested and not recommended for children) medications to our children? That is what I don’t understand. They could but they don’t… why?
Biomedical Treatments are not just used for Autism recovery, nor are they used to treat only vaccine injured children. You make it sound like “biomedical” means scary experiments in the garage or something. The biomedical that I know is about healing the body and making sure that it is functioning in the best possible way so that your child can benefit from the other therapies or even modern medicine.
There are many parents on these sites whose children have many other diagnoses. There are many other families that are doing only a few of these biomedical treatments to help their children. By labeling all of them in the same light as “Mary” or as crack pots and child abusers you are doing the responsible ones a great disservice.
SR
Sorry, but cristels posts appear to have become misaligned on my screen. I’ve worked in mental health and services for people with autism, yet I’m having trouble following the flow or the logic of her posts.
As a side note, I’m not suprised the hospital testing for milk allergy came up negative but the DAN one didn’t. I do have to question why the hospital didn’t try out an exclusion diet to test for allergies (which appears to be what worked) as this is a fairly standard mainstream method. It may be that CK’s insurance simply didn’t pay them to do one.
As always with bio-med mothers, I’m left with questions about the odd and vague parts of thier story.
dedj are you the poster of this blog?? that would be the ONLY way for you know if those 5 peices were representitive?? unless of course you ALSO read all 3500 peices from this mom. again even THAT wouldn’t lead to a representative to this moms life as most people don’t post on groups unless they are in need of help! which again would be representitive of times she needed guifdence or help or again was at a low time. that again being representative of a “support group” which is what these groups are. support groups for like minds.
not rocket science to figure out who this mom is! your put all the peices out there for people to find her (even more cruel in and of itself) you wanna put someone out there then don’t put the exact posts out there and groups! use your own words not hers…..give an example with out quotes from a real person and say this is the kind of people you may find or how some of there days can be. anyone can find any person and take snap shots of there life and make them look like snakes. heck I could do that to anyone on here just taking a few sentences here and there! doesn’t give a picture of who they are, just what those few sentences say, easily taken out of context
david what does offits income have to do with anything???
How can you slander someone whom you have not named, whom you have not identified in any way? And about whom you are not actually speaking for the record, which would preclude its being slander in the first place? Slander (and yea, verily, libel) are very difficult to demonstrate, considering the requirement that the accused must be shown to have willfully and intentionally misrepresented something relevant about the accuser. Quoting a person’s voluntary Web postings en toto and at great length simply does not qualify, especially when it’s done without actually naming that person or even providing any identifying information.
Cutting and pasting a bunch of abstracts that many of us have read already and parsed ad nauseam isn’t very useful. I’d suggest some more review (not research, as noted) of the literature and attendant discussions before returning.
My “fellow moms” all over the world do things to their children that show poor judgment and sometimes that are illegal and dangerous. Should they be beyond my judgment of them because they are “fellow moms”? Nope.
ask what you will. not sure what you are refering to about allergy testing? our DAN IS an allergist MD and we have done our testing through them backing what we have seen with the diet as to the WHY’s it has worked for us. elmination and challenge testing backing it even more testing and challengeing and changing one thing at a time to figure out what each item does and effects in our kids
he has 20 years of research into our kids and recovery of them
starting with treating a group of adults in a group home with allergy shots and diet changes. and then them having gains they had never reached before all of the sudden! a miraculous story in and of itself on how the immune system plays into oxidative stress in our kids bodies
as for confussion in my kids person story ask away on what you have question on confussion with
there may be confussion as I had to cut and past about 10 responces that for some reason never showed up on here and I was told they weren’t deleted! so I put them in a different way to make sure they showed up
should have done them all seperatly sorry
*sigh* Time to address christals mistakes again.
“sure you are! posting what backs what this mom is doing, and other biomed moms….about nutrition, diet ect.”
This doesn’t even make sense. You are being asked to elaborate on you cut and pastes. Not exactly hard work. You simply break it up into little pieces and then reference them when you make a statement that they could be used to support.
Did you never learn how to reference?
“you can kill 2 birds with one stone”
The context of this is that you’re not even killing one bird, you are blithely cutting and pasting without providing context or arguementation.
“again no need to read a discussion I wasn’t part of 9 months ago. i’m here not there”
But the discussion does exactly what was intended by your cut-and-paste. It discusses what the study could mean and how it could be applied. It also shows that this blog has come across it before, as you would have known by a 6 second google search. You could have added your currently non-existant discussion on the appropriate place.
“this peice absolutly DID attack a fellow mom”
But I did not, as you wrongly asserted. Retraction please.
“you don’t read a persons messages on a group and pretent to KNOW what they do daily!”
Actually, it’s kinda the purpose of these groups to tell each other what they did, what they’re going through, how they feel etc. So yes, you can use peoples post to asectain what they do daily, especially if they actually say it.
what!!! IDing info has absolutly been put out there on this mom, changing a name but not exact wording makes her just as easy to find being that it’s all on web and search engines do all the work for you. she has already been contacted today by people doing just that finding her through her quotes from the groups! how is that not personal. I am guessing this group is UK and not USA as legal may be different on slander!m slander in the US can be just telling other people something about someone that brings harm on them which for sure has been put on this mom today from all this. emotional distress from things said can be enough here. this is for sure willful and intentional. those quotes were put out again to those of like mind, to help not hinder! her words were taken out to hinder and attack her and her child. ways THEY were not intended to be used for.
2ndly there is know way for me to know what any of you have read on any given subject at any time…..seriously! come on….
“My “fellow moms” all over the world do things to their children that show poor judgment and sometimes that are illegal and dangerous. Should they be beyond my judgment of them because they are “fellow moms”? Nope.”
no one is arguing that. HOWEVER, someone hasn’t posted a blog for the whole world to read with info on how to figure out who they are ect on it and attacking them for those actions and highlighting it with out and giving all full info on it. (both sides)
and even more so if you have friends doing alwful stuff to thier kids harmfull and illegal what are you doing jumping on a mom that is out here doing HELPFUL things to her kids that aren’t illegal for legit medical issues! stop wasting your time on her and focus on them and bring attention to THOSE issues! as that would be sooo much more benificial to the whole world let alone THOSE poor kids!
Sorry , but if Christal isn’t going to bother working on the structure and arguementation within her posts, then I’m not going to bother reading them.
Good night all.
Dedj is not the Guest Blogger. I thank him/her for having faith that I have chosen representative posts, and I do assure you that I have.
Cristel, you say I called the mom abusive, yet the only use of that word in this entire post and comment section is in your comment. I think she’s easily led, credulous, and has been taken advantage of by quacks and by the group-think that permeates the “autism biomedical treatment” yahoo groups. I have no doubt that she loves her son.
The main point of this post was to illustrate how far the practice of woo can go, and what consequences it can have for the child. This mother is not unique. She’s just one of many parents duped by this “movement”. And the kids are the hapless victims.
haha I tell you to ask questions on my sons story and you run! hard to argue someones real experience there to defend themself hum!
“what IDing info has absolutly been put out there on this mom, changing a name but not exact wording makes her just as easy to find being that it’s all on web and search engines do all the work for you.”
Unfortunetly for you, I’ve already checked to see if this is true.
So far all google results for all the quotes I’ve tried have either been this thread, or threads elsewhere discussing this thread. Threads which accuse the Guest Blogger of all sorts of things by the way. Some quotes return no matches at all.
Also the only mention of her real name and online identity has been through these other threads responding directly to her original posts, rather than keeping it private.
I find your claims very dubious, although possible. Thanks to your blabbing buddies I now know information about her that I couldn’t manage to get from any of GB’s posts. Thanks to your blabbing buddies I now know that ‘Mary’ has been doing exactly what GB has said she has, and her own words are right in front of my eyes confirming it.
I’m sure she will thank you and your blabbing buddies for letting us all know exactly who she is. I now know far more detail than was gleaned from GB’s post using nothing but google.
I don’t agree with GB’s behaviour, but that’s a subjective criticism regarding behaviour and boundaries. I’ve seen nothing that indicates he/she has been quote mining, and – thanks to your blabbing buddies – plenty to indicate he/she was pretty much spot on.
“haha I tell you to ask questions on my sons story and you run! hard to argue someones real experience there to defend themself hum!”
Actually, I either didn’t join in until after that request, or didn’t see it amongst that mess of yours that can only be termed ‘writing’ if we lower our standards a bit.
Also, I realised on double checking it that I was mixing up your story with an alomost identical poster.
So, even though my mistake cost you nothing, I apologise for getting the two of you confused.
Now it’s time for your retraction. I guess I’m going to be waiting for long time.
david put “I would frankly suggest attacking the “cure” industry by reporting the actions of physicians AND parents as child abuse. ”
vindaloo- You’re equating the opinion of a trained professional mainstream doctor to that of a bunch of frantic groupthink mothers via the internet. The kid in the email quotes is being abused
kwambles -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.
stacy- and if Mary is just this close to killing herself, and does so because of it, is it worth it
and kev- And if she kills herself because none of these fantastic ‘treatments’ did a damn thing except hurt her boy and make her broke was it worth it?
this mom is a mom to a broken and hurting boy! she has put effort and money into helping her child and should be commended for that! acceptance of autism doesn’t help her child. even if she spent lots of money and only 1 thing helped would that not make it worth every penny! how have any of those comments helped anyone? how have they hurt this mom who KNOWS she is being talked about like this. how does this help the autism commmunity? if you truly have a child with autism you should have compation for others going through there own journey with this, NOT HATING! my prayers go out for all moms and dads and kids effected and affected by autism. may your journey bring you to those that help you and your child, not distroy you and tear you down. the world is cruel enough already for our kids and families offering very little hope and help! people already give enough naste looks in stores durring melt down, in movie theaters, at schools, at lines all over that you don’t need this crap of attack! explore all option cause no one has ALL the answers for ALL kids or there wouldn’t BE autisit kids walking around all over increasting to that 1% rate! so until then you are forced to take measures into your own hands to find those things that help. find others making gains and ask ask ask what has helped there kids in areas you have issues with and run your energy there. find commonalities and then share share share! that is how answers will come for our kids. waiting for science to have all the answers and studies to prove this or that robs you of time and energy to! by then it’s to late for your kids, and they are to old for changes and you have wasted way more money in the wait time rasing them in your own home at a lower functioning level, when they could be functional from those “other” things that could have granted them their independance! you don’t know what can help if you don’t try. no one is saying go put IV’s in your kid. trying diet changes isn’t life threating! testing for viral issues, bacteria issues, yeast issues, allergies, immune status ect are all informitive and can help you navigate what therapies and interventions can help. it never has to be therpy verese biomed. both help each other. go forward in help! if you want more info you can look up christel king on myspace and read my sons story. happy to answer quesions and help anyone that wants it! not a dr or a researcher! but a mom on a journey that has brought her kid far and helped others do the same!
christel king:
The plural of anecdote is anecdotes, not data.
There is no reason to ask about your son, or to tell you about mine. They are just two data points among millions of children.
Plus a parent’s recollection can be flawed because they are too close to the situation. Often they misinterpret temporal events, and even the cause and effect. Sometimes they mix up details and facts.
A classic example of this is because of Wakefield’s paper of a dozen case reports. It was all about the MMR. But then was it the thimerosal in vaccines (which was given attention because it was removed for precautionary reasons). So parents on my listserv would warn about the “thimerosal in the MMR.”
The problem is that there has never been thimerosal in the MMR (also no aluminum). Pointing that out prompted one parent who was chelating her child to try and get the moderators to remove me from the listserv. I challenged her to show me the evidence, and she backed down (and then later made the same correction to others, so at least some are willing to learn).
“Thanks to your blabbing buddies I now know information about her that I couldn’t manage to get from any of GB’s posts”
no one has said anything on here to come to give anymore info then defending the community as a whole. so would love to know what you are refering to
“I’m sure she will thank you and your blabbing buddies for letting us all know exactly who she is. I now know far more detail than was gleaned from GB’s post using nothing but google.”
no one told anything that wasn’t already laid out in the blog to find her. I pray those quoted tidbits logs are deleted so to keep this poor mom from all the attacks that have been placed here
“so would love to know what you are refering to”
You said she was findable through google. This implied that you had checked your claim to see if it was actually true.
Doing exactly what you claim has been done turns up one result that is this page, and the second one down is people posting a reply to one of her original posts on yahoo. None of the other results come close. Had you checked your claim out, you would have known this.
“no one told anything that wasn’t already laid out in the blog to find her. I pray those quoted tidbits logs are deleted so to keep this poor mom from all the attacks that have been placed here”
False. Thanks to people replying to her original post, I’ve been able to find out her real first name. From that post, I found several of her online profiles. All in under 20 minutes using google and less than 3 searches.
Nothing in GB’s post returned any succcesful google returns that could have led to finding all this out. The only lead has been through other people talking about this thread on the original threads over at yahoo. It appears that it’s only possible to find out who she is through her defenders clear and public identification of her by publically warning her by replying to her original posts.
I bet she’ll be reallllly thankful when she works out who it was that really exposed her.
And yet another quick google search using a quote I didn’t use earlier, returns results which are either this thread, or a reply mentioning this thread on her original post.
Who are these google demons that can alledgedly find her directly by googling a quote from this thread? Even a date limited search doesn’t directly identify her. All results are to this thread or to threads discussing this thread.
I must be doing this wrong.
Christel,
I only mention Offit’s income as an (extreme) example of AOA censoring dissent, in this case correction on very basic points of fact. My writings on the subject are mentioned elsewhere on LBRB.
Filing complaints of child abuse is not something I like, and I would only recommend it in response to blatantly dangerous or debilitating “treatments”. Lupron is one I would so classify. Chelation, esp. DMPS, is another.
Kwombles – I find it quite comical how you wasted so much time talking about the definition of research and quietly slid past a rebuttal comment directed towards you by -pD. You have so much time to waste on insulting babble, please, I can’t wait to hear your comeback to the research info -pD posted.
You know, I’ve heard about you…I’ve heard that from many…you get your jollies (as you say) off harassing others via the internet. But, I see your bark is far worse then your bite.
Wow.
All of the above (and my god, there is a lot of it) makes me extremely sad.
Debate is great, but when it descends into mud slinging like this, no one wins. Hours and hours and hours of time must have been put into the above arguments, and surprise surprise, neither side has convinced the other that they are right.
As someone with Asperger’s it’s difficult not to take the above personally. I feel like I’m being argued about, but excluded from the argument – like you are all my parents squabbling over what is best for me.
No one seems to be asking me (and by this I mean folks with autism in general) what I think. That probably says a lot.
Good for you, Jen. Really, good for you. Them jollies and all. So many inconsistencies in your posts makes me wonder what your intent really is. Also slides past answering anything directly. Distinctly feels lurkerish, you know? Not saying you are him, just that you deal with things like him. So I’m going to take your posts within that vein. After all, you said you had never been to this site before yesterday, and yet you know so much about me and what I supposedly do. You are less than honest.
James,
No one was excluded from the conversation. And your belief that no one is asking autistic individuals what they think about treatment options or anything else for that matter is not one that is borne out by the facts (you may not know where this is happening, but it doesn’t mean it is not happening). As far as stopping midstride from saying that this mother was troubled and what she had put her kid through was horrendous, and asking literally what an autistic individual would want or autistic individuals in general would want, perhaps we were fairly certain that no child, no adult, period, would want to be subjected to what that child has been. Plus, some of us have undoubtedly been aware that there were autistics on here responding.
And, for the typical conversations between anti-vaxxers and those who disagree with vaccines as the cause of autism, this was really very little mud. Did you want the parents and individuals who are against subjecting helpless children to all manner of woo, and dangerous woo at that, to be convinced by the specious arguments presented by what appears to have been no more than two individuals (three if we count pD, and I would personally not place pD within that group of “two) and their less-than-stellar logic?
I tried to be nice on several occasions, waited & waited for someone here to present factual evidence or info, and was called names repeatedly…I am laughing that you are shocked I finally had had enough of such a conversation.
And no, sorry to disappoint, not a lurker. As I stated…I heard about you. They are all talking about you on the groups you so love to hate.
But, I’d be more then happy to keep checking for your rebuttal posts to the data and other factual information those who I agree with on this subject posted and will continue to wait for some factual information (anything, something) to be posted from anyone on your side of the fence.
Till then…good day to you!
jen,
You are waiting for a response to what, exactly? Proof that every one of those treatments that Mary gave to Saul are useless?
I’d suggest, really sincerely suggest, that you go and read the Cedillo testimony on the Omnibus case. You can find it by adding the triple w to the front of uscfc.uscourts.gov/omnibus-autism-proceeding
Once you’ve done that, you might just change your mind.
See this is where the only using 5 or so posts to beat up Mary is falling short.
The discussion on IVIG is wrong, she wasn’t trying to “cure” her son’s autism with IVIG. Her son was being treated with IVIG for PANDAS after being seen by an immunologist at UC Irvine…mainstream doctor,not a DAN. Full immuno work up done, through a real lab, not DDI or Great Plains. His immuno numbers were horrible, his myelin basic protein antibodies were 400% elevated, as were several other “anti-brain antibodies.” The doctor felt that IVIG was the one way to reset/correct his immune system so that his body would stop attacking his brain.
PANDAS set in after a mainstream pediatrician misdiagnosed a strep infection with a rash as Fifths Disease and flat out refused to do a culture after the rapid strep was negative. Insisted it was Fifths Disease. AAP 101 says “confirm a negative rapid strep with a culture.” So mainstream medicine failed him right there. The strep went untreated, a month later he was sick again with rheumatic fever (strep related) and boom………PANDAS symptoms set in.
I have heard Mary say over and over that she would take her kid back, autism and all just the way he was before PANDAS, because PANDAS is worse than autism. No mainstream doctor seems to want to help with PANDAS because they don’t know what to do.
You don’t have all the facts and that’s a problem.
Jen not every one was useless.
IVIG – treating known autoimmune disorder. Mom has one too so it’s probably a genetic thing
Zithromax -used to clear chronic strep (confirmed by mainstream ped and prescribe by such)
Nystatin- to clear yeast infections caused by prophylactic antibiotic use. When child is exposed to strep, the reaction is horrible and he becomes self-injurous probably due to brain inflammation.
Low Dose Naltrexone- helps keep the immune system in check. It is also recommended for people with RA and MS, autoimmune disorders just like Saul’s PANDAS.
Enhansa/curcumin- anti-inflammatories. Works as well as steroids without the side effects. I use it myself for RA.
Inositol- B vitamin that for some reason helps calm OCD, as proven by many mainstream studies. Sure beats putting the kid on an antidepressant or an anti-psychotic when the OCD makes functioning normal impossible.
What’s wrong with probiotics? They keep a healthy GI tract and as any woman knows, the gyno usually tells you take them when you take antibiotics to keep away yeast issues.
Vitamin C really, what is wrong with Vitamin C.
Chiropractic- would these be an issue if he were typical. I go for adjustments. I had a friend growing up whose family went each week for their adjustments. What is so wrong with going to a chiropractor? I read in Mary’s blog that her son had his first formed bowel movement in over a year after his first adjustment.
DMG- dimethylglycine used to be in multivitamins until they found out that a deficiency in it didn’t cause any health problems. So what’s wrong with putting some back?
vitamin E- helps boost the immune system and is good for the skin
Saul had chronic eczema from a year old until about 3 1/2. Maybe instead of applying toxic Elidel, the mother chose to give her kid a vitamin to help it instead.
So not everything there is useless. Useless because you think it will not do anything for autism, but not useless for other medical issues the child has.
I take almost as many supplements on that list. I have rheumatoid arthritis and live a completely normal life without pain, inflammation or joint damage. I also have not taken my methotrexate (chemo drug), plaquenil (DMARD that can cause retinyl toxicity) or my Enbrel (some other toxic crap and is hard on the liver) in over 2 years. My rheumatologist is on board and amazed that my blood work is always perfect, my joints look great and every year my xrays come up clean of any erosion.
Jen,not everything on that list is useless.
IVIG- treating a known autoimmune disorder diagnosed (and prescribed) by a mainstream immunologist
Zithromax- used to clear chronic strep, and prophylactically to keep strep away. Causes severe reaction in child who becomes self injurous while having strep.
diflucan/nystatin- helps keep yeast overgrowth from prophylactic antibiotic use away. Gynos prescribe it for yeast all the time. Not all yeast is female issues.
Enhansa- anti inflammatory properties. better than taking steroids if it causes less side effects
DMG- dimethylglycine- used to be in general multivitamins until it was discovered that a deficiency of it didn’t cause a medical problem. What’s wrong with adding it back in?
Epsom salt baths- have you never taken one? they are wonderful. So calming and relaxing. Great if your constipated too. Usually brings on a BM in 20 minutes or so.
Essential Fatty Acids- what’s wrong with them? My doctor recommended I take it during my pregancy and my mom tells me all the time how they took a tsp every day as kids.
Inositol- a vitamin that has been proven in studies to calm OCD. Why give antidepressants or anti-psychotics when OCD makes living any kind of normal life impossible if a vitamin can do the same thing?
IM Bicillin – used when oral antibiotics couldn’t bring down chronic strep issues
Low Dose Naltrexone- also an immune modulator. Kid has an autoimmune disorder. LDN is also recommended for people with RA and MS
MB12 shots and nasal spray- people get B12 shots all the time
Chiropractic- people do this all the time. I get adjustments.I know a family that goes with all three kids for their adjustments. I don’t see the issue in having your back adjusted. From Mary’s blog though I know that Saul had torticollis since birth and had therapy for it. I also read that he had his first formed bowel movement in over a year after his first adjustment.
vitamin C- what is wrong with Vitamin C
vitamin E- promotes a healthy immune system. Kid has immune issues. It’s also good for the skin. Saul had eczema from about a year old
HBOT- kid has confirmed brain inflammation (from mainstream immunologist remember?) hbot helps with inflammation. Also good for autoimmune disorders and both mom and child have autoimmune disorders.
So while you think everything on that list is useless in treating autism, it’s not useless, and has benefit treating other health issues the child has.
oh and Flagyl is not a prescription antifungal, its an antibiotic..an antibacterial. Child with chronic strep issues using antibiotics….not a crime. If the mainstream doctor had treated the child appropriately the first time, and run a simple, common $20 test instead of misdiagnosing him, half this list may not have been needed
@Stacey: Given that PANDAS syndrome is not recognized (yet) by the mainstream medical world – and I am not saying it does not exist, simply that it is not recognized yet – and IVIG may be an appropriate treatment for this – how do you explain the multitude of other treatments “Mary” has given her son?
As I have said before, treating a child’s illness is always appropriate, whether it is a food allergy, celiac disease, or IBS. Using unproven treatments to “cure” autism is not treating a child appropriately.
Autism is not a disease. It is a developmental delay. Children with autism continue to grow and develop, and a percentage develop enough that they lose the diagnosis. Children with other version of developmental delay – Down’s Syndrome, for example – will develop to a certain stage and never get beyond that stage, no matter how hard they try or how much intervention you do with them.
The people on the message boards point out very loudly that they are “curing” their children. Why do they not work together to do a valid research project on the treatment(s) and publish them? Surely there are DAN! doctors who could do this. They would get fame and money if they were able to prove that a certain treatment/series of treatments were better than the conventional medical treatments of therapy. All we are asking is for documented proof that a certain treatment works. The people on the message boards scream for proof that vaccines are safe; why can’t we scream back for proof that their treatments are safe and efficacious?
“Who are these google demons that can alledgedly find her directly by googling a quote from this thread? Even a date limited search doesn’t directly identify her. All results are to this thread or to threads discussing this thread.
I must be doing this wrong.”
Try Yahoo Search, it pops up there.
Jen,
It’d help if you directed your comments specifically. Who hates these groups you frequent? Who had you heard of before?
When did you try to be nice? I must have missed that it in all the nonsense you and your sockpuppets flooded the thread with.
The opening post may tell us more about the author than the article itself.
Severe autism is a disease and a cause of developmental regression.
All of the treatments listed affect the immunogenic response and may be beneficial but without repeated double-blind controlled clinical trials the placebo effect cannot be excluded.
However, if some of the treatments are harmless why not try them even just for the placebo effect?
It could be that autism will eventually be treated with a combination of treatments affecting the immune system, rather similar to the synergistic combination treatment of childhood leukemia. Mary`s underlying philosophy may not be too wide of the mark.
James
my best friend is an aspie, in fact she had me put over her on her wish as her gaurdian to step in durring times of melt downs ect. SHE Is doing the above great list of things as well. of HER choice. she cried in joy realizing there were treatments out there for her anxiety issues, medical treatments like IVIG to treat her ever crashing immune system, yeast treatments for her cronic yeast infections that not only messed with her boby but her mind and head. they were answers to prayers! she had PANDAS for years with out realizing it and DAN was her ability to finaly put names and defining medical tests to her “symptoms of autism” and she is so much better of for it. she found out her long list of allergies and removed them and functioned with out constant belly bloating, pain, stool issues, absorption issues, malnutrition, cronic sinus issues and flares ect. not every person is going to be the same, an aspie view also has a higher functioning level of reason from a low functioning autistic child. we as parents as this is the case being presented many times have to make choices as a parent on what is best for our kid. needles aren’t pleasent but in a case with a kid with diabietes its important to have to treat a child. or a kid with cancer loosing hair can be tramatic but the result of not treating can be worse! you haven’t been ignored! but again you choosing NOT to doing biomed is your choice, my aspie friend hers. you are adults. my aspie friend cries over her parents lack of treating and how it could have made her life easier now as an adult and she would function better from it. so either way both may feel! but we are talking about mom and child here. DAN has children come up and talk about there experineces when recovered. how they feel about it, and all they have been through, never in any of them do you hear regreat. they are whitty and happy they have been helped. there is a great vidoe called autism yesterday ou there with children talking about going through treatment as well and how it helps!
In response to Stacey @ September 24th, 2009
15:24:02
Here’s a quote from a technical abstract describing PANDAS
“Background: The current diagnostic criteria for pediatric autoimmune neuropsychiatric disorder associated with group A streptococcal infection (PANDAS) are pediatric onset, neuropsychiatric disorder (obsessive-compulsive disorder [OCD]) and/or tic disorder; abrupt onset and/or episodic course of symptoms; association with group A ?-hemolytic streptococcal (GABHS) infection; and association with neurological abnormalities (motoric hyperactivity or adventitious movements, including choreiform movements or tics). . . .In children treated with antibiotics effective in eradicating GABHS infection at the sentinel episode, OCD symptoms promptly disappeared. Follow-up throat cultures negative for GABHS were obtained prospectively after the first PANDAS episode. Recurrence of OCD symptoms was seen in 6 patients; each recurrence was associated with evidence of acute GABHS infection and responded to antibiotic therapy, supporting the premise that these patients were not GABHS carriers. The OCD behaviors exhibited included hand washing and preoccupation with germs, but daytime urinary urgency and frequency without dysuria, fever, or incontinence were the most notable symptoms in our series (58% of patients).”
Of course I don’t know Mary, and whether I can rely on her recollections. I can however rely on her words posted to various groups. Yes, in the fall of 2007 she does post about the Fifth’s disease, and how he had become very clingy and whiny. She also saw a decrease in spontaneous expressive
language, asking repetitive questions, and repeating back questions instead of answering them. I guess these are what she considers the symptoms of PANDAS.
But here’s something she posted in Feb 2004 (more than 2 years previously).
“He’s slipping back and I don’t know why. His eye contact has been off for about a week. He has started stimming on pictures again, he has begun licking things. Here’s what has me most puzzled and should I be concerned. Is this a normal thing kids do when they start to talk or is he stimming on hearing his own voice?? For example, he used to see the light and point and say light and that was that, he’d move on to something else. Now he will point at the light, stare at it and say the word 10- 15 times before he stops. When we are in the car he will say “sign” from the moment we see a stop sign until we pass it. If he sees a car commercial guess what?? Car , car, car 10 or so times. He walks around playing and just repeating “mommy, daddy, mommy, daddy” Occasionally its “mommy daddy baby” over and over. When he used to just baby babble the sounds were all different. I almost wish he’d go back to just babbling when he plays because this is really bothering me. Is this stimming or do kids just do this because now they have words to say other than just babble??”
And in summer 2006
“My son is really not all that different than he was this time last year. I thought he was doing great until I watched video from last summer and realized he really isn’t. Sure, he’s talking much more, but his speech is mostly echolalia, scripting and the constant repetitive asking of the same nonsense questions without even waiting for or caring if there is an answer. He still can’t hold a conversation, doesn’t write, won’t even really hold any writing implement, he has absolutely no social skills whatsoever. People do not exist to him. He has no fears, runs off a the drop of a dime, and is getting aggressive (pinching and hitting me only, no one else).”
I don’t know about you, but it sounds to me like Saul always had these PANDAS-type symptoms.
Okay so now look at the summer 2006 post. Saul may still have many issues but I can tell you he writes now, words, sentances, drawers, colors, he’s social, other people exist because he acts out when he doesn’t get attention and seeks out people, he has normal fears, he no longer runs off. Sounds like he’s doing better in a lot of ways.
There are different articles with different symptoms of PANDAS, tics are a part and Saul has tics, motor and vocal, and choreiform movements.
You can post all the quotes you want. Even if you post all 3500 of her posts, you still won’t be giving the whole picture. Parents can post out of desperation. When tired, desparate and not thinking clearly they may make things sound worse than they are,because they feel worse.
I know that the post,the one that starts this, was made when Mary had had a bad few days with her son, there were marital issues and something else going on. All seemed worse. After a few failed attempts to get a friend by phone (myself included)she needed to vent, someone to “talk” to even if it meant typing out how she was feeling. Looking for someone to understand. The poor woman will probably never seek out help or a shoulder to lean on again.
I have to wonder what would have happened if Christy Nolan’s mother wasn’t willing to try a newly discovered drug that was originally developed for a condition other than his own.
what a brilliant mind the world would have missed out on.
Now you have something else to google and bitch about
I have a daughter who is brilliant. She spoke 3 languages by the age of 2.5. She knew most of the animals at the Zoo (dwikers, okapis, You get the Idea) . She was a normal child in many ways.
She had never received any immunizations except the one the give at birth (which they weren’t supposed to give her).
Insurance wouldn’t let her on any plan except the one she was on at birth, because she had not received immunizations. Insurance costs were over $1200 a month and rising.
One MMR and One DPT only- Now at age six she can only speak one language. Within 3 days of the shots, she couldn’t recognize what we were saying unless it was in English.
She never had a cough or got sick for 2.5 years. 3 days after the shots she develops a cough and then reactive air way disease. she got sick constantly for 2.5 years.
Her behavior went off the chart after she recovered from the immunization shots initial effects. Some tried to label her as asperger’s. Some ADD or ADHD.
Natural treatments are helping dramatically. Things like what Better Lamont does, You can see a short video on youtube.
Herbs and special supplements are dramatically bring my daughter back. At age six and much work we may get the languages back.
I would like to hear from others who avoided immunizations for at least 2 years or more. I’d like to hear their stories.
Immunizations ruin more lives than they help……
Any one who says differently is under the effect of immunizations and not living with a child damaged by their effects.
Mothers know when their children’s behavior changes. Doctors to brain washed to think only one way.
The plural of anecdote is anecdotes, not data.
Especially since in the USA the DTP has not been given for several years. A child who is presently six years old would have received the DTaP, and it would not have any thimerosal.
Also, what insurance company has punitive measures for lack of vaccination? Please tell us so we can avoid that company!
I would also like to repeat this question: What are the relative risks between the MMR vaccine versus getting measles, mumps and rubella? Please provide documentation with real science. Thank you.
dawn
ARI is doing exactly what you are talking about with private funding from families just as our own. (and fund raising) problem is that most of us parents are broke treating our kids. the other reason that much of what you are asking about to be done hasn’t been done is because no one profits from it! meds are testing because they can pateint it and make loads of it! vitamine companies not the same. there are studies on b6 and mag vereses ritalin where the suppliments show out better. there are studies on taking away I think it was milk from jails and no issues for the day. things like prozac are made from naturals like st johns wort and then they throw on a bunch of fillers and jack up the price! THEY know naturals work to. they take l-carnitine and add in color and sweetner and call it levo-carnintine and market it at a jacked up price to insurence companies, they market b12 shots ect. and they are used in hospitals, HBOT Is used for brain injury, IVIG for immune issues, chelating adgents for heavey metal poisening
you have missed the belief of the biomed heads. autism is a discription of a symptoms to give a label. those symptoms are not that of autism but disease, damage, oxidative stress load being to high, allergies reactions causing stress, yeast issues, out of wack immune system ect. causing symptoms that when all smacked together give this LOOK we call autism. as you treat the underlying medical issues (which by the way are different combos for each kid which is why autism looks different for each kid) you loose some of the symptoms, by way lessing those LOOKS of autism. so it’s a belief on what is autism at the basic level. so you are never curing autism, you are working on curing the disease or ocidative stress source that is resulting in the behavioral issues or look of autism
PANDAS is recognised by NIMH and they have a section on it.
Hi Dawn –
Slightly OT, but you do seem to have an open mind; something which I’ve come to appreciate.
You might find this article interesting; wherein researchers were able to generate repetitive behaviors by infecting some animals with strep, observing repetitive behaviors, siphoning off the resultant antibodies, and injecting the antibodies into different animals. In fact, the authors mention that this is supplemental evidence towards what has been observed; improvements in children with PANDAS following IVIG treatment.
http://www.sciencedaily.com/releases/2009/08/090811143538.htm
– pD
David you must be uneducated on chelation then! it’s used all the time for people who are metal posiened! not at all abuse. lupron a med used for hormon issues. again used as needed. people don’t just go to the store and say I think I’m going to try this or that. they have testing showing a NEED for these things to treat medical issues.