“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 
thanks jen forgot a few you triggered
self selection on foods (*only crackers and milk)- gone with diet changes. now we eat meats, veggies, fruits, alternitive carbs and get all the nutrients that he needs with out the junk!
sensory issues- gone with diet changes in 24 hours
stimming (doing laddle laddle ladddle all day, need to wave hands infront of his face and spin things all day) gone with doing vit A and treating the underlying measels issues
toe walking and flapping- gone with treating with antifungals
I’m glad to see that we’ve finally resolved the mystery of how the so few and the so wrong can be so loud: They amplify through sock puppets.
And here are a few observations from a scientist:
1. anecdote /= data
2. the dose makes the poison, of anything
3. “natural” substances, including viruses, plant toxins, and opiates, kill us all the time.
4. Yelling doesn’t somehow make something into a fact
5. Once again, I’ve found many great examples to use in teaching science vs pseudoscience, including the following (1) conspiracy theory, (2) ancedote over data, (3) lots of emotion, (4) sciency words or using ignorance of sciency words to engender fear, (5) reliance on testimonials over controlled studies incorporating the scientific method, (6) requests to prove a negative, and (6) refusal to alter “hypotheses” even in the light of abundant data to disprove existing ones. Thanks for that.
And my favorite are the people who question Guest Blogger’s way of spending time. This seems like an excellent way to have spent one’s time because it highlights the harms that the woo witans are causing. Shining a light on charlatanism that harms is never a waste of time.
Cheers.
I dispute your assertion, christel. You’re welcome to prove me wrong. (BTW, “go read this list” is not an appropriate response showing there are thousands of anecdotes.)
Most of the time, I think the claims are of the “I think it’s working” variety.
many with documention from non believers such as yourself that can’t deney it after seeing it with there own eyes.
I’m also disputing this assertion.
sullivan
actually the AAP did, they even put out a flyer on autism and sent it to peds with the info. I will find you the info and post it here for all to see
Physician Fact Sheets taken right for the AAP wedsite. I had the actual print out at one time I will keep looking for it for more clairity for you
Autism Checklist for Health Care Professionals-
This checklist was developed to assist health care professionals in ensuring that important steps are taken in the identification, diagnosis, intervention, and management of children with ASDs and their families and can be placed in the child’s chart to track when these steps have been completed.
Meeting the Needs of Children With Autism Spectrum Disorder During Medical Visits, Dental Visits, and Other Challenging Procedures: Advice for Health Care Professionals-
This document is designed to provide guidance to health care professionals on how to make visits go as smoothly as possible for patients with ASDs. It includes steps an office can take to better prepare for these visits.
The following resources are fact sheets that provide primary care professionals with background information about a variety of topics. They can be used to prepare for questions parents may ask during a visit.
Adolescence and Transition to Adulthood
Asperger Syndrome
Behavioral Principles
Complementary and
Alternative Medicine
Therapies
Dietary Treatments
Used for Behavioral
Management
Eating and Nutrition
Gastrointestinal
Problems
How to Decide on
Treatments When Parents Are Seeking
Complementary and Alternative Medicine
Psychopharmacology
Seizures and Epilepsy
Sleep Disorders
Toilet Training
Mich, where was there an argument between biomedical and ABA on this thread?
Pardon me. I meant in general. It seems to me that both sides get so overheated that their own approach is the ONLY one and I get tired of it.
I’m going to bow out now. I was hoping to offer an opinion in spirit of cooperation, but I see that this isn’t going to be possible. Please, everyone, keep arguing. I’ll be over in the corner working on sight words with my children. When you’re done arguing, come play at our house.
there are adverse reactions to meds to! all kinds of them reported, and THOUSANDS of them reported to vaccinations! nothing is done about those! and they way out number those bad reactions to biomedical. you are talking about 1 bad reaction to chelation! where the wrong med was grabbed by a nurse not even a dr. find more and then lets talk!
yeah and die off, welcome to the real world! it happens, just like with draw with diet, it’s part of the course, just like drug addicts coming off drugs. that’s an opiate.
there is viral die off from killing of pathagentic stuff
same for bacteria- nothing different then taking an antibiotic mainstream wise or getting SICK FROM a vacciantion because you got a shot! there are side effects from stuff which is why it’s good to be educated and research before doing anything’
there is yeast die off which is where you see most of the ugly stuff, and yeast is toxic if popped so to speak to quickly. it IS preventable with diet, and charcole. again coming back to research.
but you know chemos not much fun either, makes you sick but you do it for a reason, to get the bad stuff out and make the body whole. not much different
gotta get the toxic out do the body can run as it should
jen:
Don’t the diseases themselves have high fevers, seizures and other symptoms associated with them? What are the risks of injury from getting measles, mumps and rubella compared to your list? Provide actual documentation.
Here are some I have (notice that the MMR mania has caused an increase in measles, mumps and rubella in Europe and Japan):
J Infect Dis. 2004 May 1;189 Suppl 1:S69-77.
Acute measles mortality in the United States, 1987-2002.
Gindler J, Tinker S, Markowitz L, Atkinson W, Dales L, Papania MJ.
Pediatr Infect Dis J. 2009 Sep 4.
MEASLES OUTBREAK IN GERMANY: CLINICAL PRESENTATION AND OUTCOME OF CHILDREN HOSPITALIZED FOR MEASLES IN 2006.
Arenz S, Fischer R, Wildner M.
Pediatr Infect Dis J. 2009 Mar;28(3):173-5.
An office-based prospective study of deafness in mumps.
Hashimoto H, Fujioka M, Kinumaki H; Kinki Ambulatory Pediatrics Study Group.
Auris Nasus Larynx. 2005 Jun;32(2):125-8. Epub 2005 Apr 7.
Epidemiological study of mumps deafness in Japan.
Kawashima Y, Ihara K, Nakamura M, Nakashima T, Fukuda S, Kitamura K.
Pediatr Infect Dis J. 2009 Sep;28(9):795-800.
Rubella Outbreak in the Netherlands, 2004-2005: High Burden of Congenital Infection and Spread to Canada.
Hahné S, Macey J, van Binnendijk R, Kohl R, Dolman S, van der Veen Y, Tipples G, Ruijs H, Mazzulli T, Timen A, van Loon A, de Melker H.
Arch Pediatr Adolesc Med. 2006 Mar;160(3):302-9.
Impact of specific medical interventions on reducing the prevalence of mental retardation.
Brosco JP, Mattingly M, Sanders LM.
Sullivan:
“These are often explained away as “die off”.”
You mean the Herxheimer Reaction?
http://en.wikipedia.org/wiki/Herxheimer_reaction
I remember when I finally found the probiotic strain my lil guy needed. What a terrible few days but the reward was awesome and that junk needed out of his body. He had so much yeast in his system…it was just like the flu…no worse. 3 days. Then when he had a bowel movement I could actually see the yeast in his bowels!!! I was shocked! And even thou his ped GI doc at a very well-known hospital told me a year prior that he should be on probiotics I blew it off…cause some over-the-counter “natural” product wouldn’t help my son…no way would I believe such silliness. I became a believer when I saw yeast die off in his diaper!
jen,
I’ve seen people claim “die off” while using valtrex (an antiviral against the herpes virus). People claim “herxheimer reactions” where none exist. They use it to cover up adverse reactions.
i have helped hunderes if not thousands of families out on their biomedical journey over the years. all I can say is the reward is GREAT! I get letters many times daily saying thank you for the help, my child said mama, or I love you for the first time today with the changes we have made this week, or my kid rode a bike today with the changes we made this week after years of therapy not working. where it came down to a chemical or nutritional issure being what was holding them back. I have 2 other non ASD kids. both have used biomedical to help with things. one had failor to thrive and we found out her brother had a carnitnine issue. put her on it as I knew it built muscle and she also had the low tone. in 2 weeks went from 22 pounds to 32 pounds! the dr’s were ready to hospitalize her dispite her great diet. my second had the same issues, mainstream med put her on neocate, and it crashed her immune system between that and breast milk from toxic me. come to find out she was allergic to coconut, going off her immune system reregulated.
someone posted about great plains labs. here is their plug, we have done lots of testing through them and praise God we found them
we have split samples sending half to them and half to our hospital. the hospital found nothing and was no help in time of need, great plains came back with bacteria and yeast, names, sensitivities and resisant labels on them ect. we treated and resolved issue. went to the dr mad to which his reply is you have state insurence, this kind of test would cost us 400-800 dollars and the state won’t pay for that kind of sensitive testing. we paid 200 for it and got answers. sad that parents have to pay for those kind of answers when those that are SUPPOSE to help aren’t. even funnier that things they revelied as issues over 6 years ago our regular dr’s are now coming and saying by the way our labs have found this problem medically with your son. they are shocked when we aren’t as we have known that for years. we even had a dr rerun some tests to try and debunk what we had learned through them only to PROVE THEM right! and he cost thousands more through HIS testing methods to do so.
so do what gives results, cause after all THAT Is what is important! results for your kids, better quality of life for them and their families and the rest can get sweep aside!
putting hope out there
christel
yeah I have had that die off to! I had to go through yeast die off with our dr. with diflucan, felt like crap for 2 days like the flu! took pictures of what came out! whole colonies. our GI was FLOORED> he had only seen pictures like that in text books of bad cases…..sad to know that IS most of our kids on spectrum
Chris…you said…
“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.”
First, thanks for the sockpuppets comment! Wow, feel better now? Does it make you all feel better to call names?? If your child or a co-worker…or anyone you respect doesn’t agree with you on a particular subject do you seriously revert to name-calling???
Ok, so what my questions…I was honestly curious about what disease your child was injured from for two reasons…
1st because of the over 100 non-vaxed children I know in my community and my family you are the first person I’ve ever heard or say that their child (in my generation or the previous few) that has ever been injured by a disease. I sincerely mean no disrespect when I say this but frankly I don’t believe you. Your statement peeked my interest…I honestly want to know more. I know of kids now-a-days getting chic pox or measles but lets face it, if we are all old enough we either had one of the other or both and survived.
2nd because I’m very curious what disease that a child could get in this day in age that would harm him in such a manner that you state you have a child injured by a disease.
3rd if you all agree that you don’t want children to be harmed then please, tell me what I should look out for so that I can make an educated decision about vaccinating…maybe your story will be the one that will change my mind???
jen,
you used multiple names in this discussion and now you are attacking the person who calls you on it?
That’s what I call blameshifting.
What are the relative risks between the MMR vaccine versus getting measles, mumps and rubella?
the vaccination mania is not what causes up upswing in disease
you talk out both sides of your mouth
i find it so funny when you hear stories of out break. they try and blame it on a kid unvaccinated starting it, and then 2 of the 14 kids who got the break out were unvaccinated! but what they forget to say is 12 of them HAD vaccinations. hum…..lets think about that for a min. I guess that means they haven’t provented it then in the first place have they!
if you go back in history numbers for the diseases were already on their way down from people having already been exposed and passing on immunity ect
vaccination just happen to be around the same time.
2nd multi vaccinations are NOT tested together. even the example you gave above shows that. having had those shots in childhood and then given new ones 20 years later is not the same thing as testing 9 shots giving in one day at one time and how that effects the immune system. kids immune systems can’t fight all that off at the same time, let alone throw in taking advise of putting in tylonal to shut down glutathione production which is your bodies natural ability to detox and protect itself from invaders.
you wanna talk about hype! lets talk about swine flu! it’s no worse and not even touching regular flu! not even on death count or %’s but let scare everyone cause our bottom line is hurting so we can create need for a new vaccination and fix that issues and our media plays right into it! what a joke. we have had several cases in our church of the swine flu. and no joke they all laughed about how is was so much more mild then regular flu and they would take swine flu over regular flu anyday!
flu mist (*regular) does not contain mercury
the shots all still do
to correct that info
These discussions follow such a predictable pattern. Always, always, after a while someone starts arguing that vaccines don’t really work, the diseases were going away anyway.
To back this up, people usually use death rate rather than actual sickness rate graphs.
Measles, just happened to go away shortly after the vaccine was licensed in about 1964.
Rubella, just happened to go away a few years later…coincident with the introduction of the vaccine in 1969.
Mumps just happened to go away after the vaccine was introduced in 1967.
Polio just happened to go away starting in the 1950’s.
Hib went away starting about 1988, coincident with the introduction of the vaccine.
Rotavirus infections are down about 80% since the introduction of the vaccine in the last decade.
Funny how all these diseases decide to go away at the same time as the vaccines are introduced.
That’s very telling, christel, although probably not in the way you think it is. Thanks for the info.
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.
I see christel is also a denialist of the general effectiveness of vaccines. It’s probably a waste of time engaging her in further debate. It’s like debating an Obama birther or a 9/11 truther.
Sullivan, has I’ve stated over and over, I put in different names out of confusion not out of trying to be deceitful. Please understand and I apologize for this mistake.
So you say you’ve seen people claim die-off…are you saying what I saw with my own two eyes and watched what my son went thru for 3days is and adverse reaction to a over-the-counter probiotic???
The notion that starting a person (in this case, a child) on a gluten-free casein free diet leads one down a “slippery slope” to the world of biomedical treatments is fairly subjective. Do you have research to prove your theory?
For us, it took two days to “sell” us on the GFCF diet. Two days after removing milk from our son’s diet, his stomach bloating went completely away. The constant redness to his cheeks and ears subsided. In two days, the constant head-banging, screeching, and generally “drunk” disposition of our son TOTALLY changed. Would you dispute that these are positive changes in a boy who was diagnosed on the severe end of the autism spectrum?
When we decided to change his diet completely, he started looking at us, seeking us out, and playing again. Yet, no tests have ever showed a traditional allergy to wheat, or milk. In spite of the lack of that traditional allergy, our (very mainstream) regular pediatrician fully endorses our dietary choices for our son. Why? Because he witnessed the positive changes to ouur son’s pjysical condition as well as his behaviors. We have our son’s bloodwork tested regularly at Children’s Hospital to monitor his vitamin levels…he’s a very, very healthy little guy compared to the way he was before the diet. AND YES — we do supplement his diet! He takes whole food water soluble vitamin supplements, probiotics, dietary enzymes, and biotin. All fully endorsed by his developmental pediatrician at Children’s. A far cry from being a “charlatan!”
This little man has a battle ahead of him, and it’s our job to make sure his body is as healthy as it can be. My choice is to NOT feed him pop tarts, cheetos and pepsi.
The evidence of the GFCF diet’s effectiveness for autistic children with coexisting GI disorders will go beyond anecdotal when a double blind study (consisting of more than 12 children and a chart review, thank you) is fully funded and executed. You are doing FAR more harm than good by dismissing the GFCF diet based on what seems to be purely your personal opinion. A simple dietary change could truly help a great many children.
Jen,
Let me try and explain the basics, and then perhaps you could go away and think about it.
An unscrupulous, money-grabbing, fame-hungry doctor is hired by a lawyer, at public expense, to propound the theory that eating pork pies causes autism. They have no evidence for this, but what the hell?
Following extensive media coverage of this extraordinary claim, many parents of autistic children who seem to remember feeding their children with pork pies come forward declaring that they are the living proof of the theory.
Other parents, who never had a pork pie in the house from one year to the next, also come forward claiming to be victims of the pie scam. They assume leadership roles, blaming a conspiracy by the meat industry. Mostly they are women, and shun their husbands who point out that what they are doing is fraud. Who cares? Those Big Meat people are bigger liars than we are, and we need the money, and we know it was the pie, because mothers can tell.
Thus, the claim takes hold.
In short, you have no more evidence that vaccines injured your child than you have evidence that it was a Thursday that did it.
Children have developed autism after:
Trips to the zoo.
Baptism.
Traveling on aircraft.
Watching television.
Loud noises.
Heavy rainfall.
Thursday.
Pork pies.
You would have some harrowing tale to tell, and all the evidence suggests you would have had much the same tale if – like for example Michelle Cedillo – your child showed the first signs before s/he was vaccinated.
Look to your hatred. It only makes things worse.
Joseph said…
“I see christel is also a denialist of the general effectiveness of vaccines. It’s probably a waste of time engaging her in further debate.”
Christel is not a denialist…she’s a parent who has seen both sides. She’s done her research time and time again and she keeps coming back to the same conclusion. And I’m sure she is a parent who loves her child(ren) and has choose for them to step-away from vaccines because for her child(ren) they caused a reaction has reviewed all the data and isn’t willing to take that risk.
I think it suffice to say we are all good people with all good-intentions. I think its ok to agree to disagree. And for us we all have different views or manners in which to raise our child…what is the best fit for our family. Parents on both sides of the fence are doing what they either know or feel is right for their child’s safety.
I think future posters should respect parent’s in allowing them to feel safe in forum’s where they can express themselves and ask questions. I think if arguments are to be created I think they are best handled with data rather then the words of an exhausted and frustrated mother.
Holly,
I’m going to repeat a comment I already made up above. No one would argue that a child who has lactose intolerance or an actual allergy to milk should still drink lactose-containing milk. In that case, as in all real life situations, there’s a balance between risk and benefit. If you want to argue that an autistic child has one of these conditions, or celiac disease, and genuinely feels better on a milk-free diet, I wouldn’t argue with you. The problem is that GFCF is held up as a cure for autism, not for lactose intolerance, milk allergy or celiac. Most autistic kids aren’t even tested for those conditions before they are put on the diet.
And if they don’t improve on GFCF, then it’s the parent’s fault. They aren’t being careful enough. They are using non-GFCF shampoo, play-doh or bandaids. They aren’t trying hard enough. It’s the same with all bio-med treatments. If it isn’t working, it’s because you haven’t tried enough things, not because the things aren’t working. This lead to terrible guilt on the parent’s part. Being called a refrigerator mother is nothing in comparison to the guilt some of these parents, including “Mary”, feels when their child doesn’t recover.
Holly, here are the symptoms of lactose intolerance: “The common symptoms of lactose intolerance are gastrointestinal, primarily, abdominal pain, diarrhea , flatulence (passing gas), and, less commonly, abdominal bloating, abdominal distention, and nausea. ”
Don’t you think it possible that your son does have lactose intolerance? Congratulations on doing nutritional monitoring. If you are going to go GFCF, that’s certainly a good idea.
As for whether GFCF leads one into the path of more extreme biomed, that’s certainly been my observation over many years of reading yahoo group posts. “Mary” is a perfect case-in-point. GFCF is the very first biomed treatment she considered trying. In her case, it certainly led to more extreme treatments.
As for a rigorous GFCF study, there is one underway:
http://clinicaltrials.gov/ct2/show/NCT00090428
It’s only 30 children, but that’s better than 12.
Dear Another Vistor, thank you for your comments, its much appreciated. You don’t need to “break it down” as that break-down has already happened. I’ve thought about it all (vaccines), Autism aside too, and did almost 4yrs of extensive research. Please believe me, I’ve truly want to believe that vaccines are safe and effective but the data is just not there! I cried for two weeks when I got done with most of the info. I don’t want to be an “outcast”, I don’t wish for something to happen to my children, I feel the mainstream doesn’t quite want everyone to catch on.
I don’t want to think that the pharma industry is a scam but I just can’t see proof that it is not, as a whole. I do believe in medicine, doctor, hospitals, etc. but I think the pharma and government are in bed together and are getting too greedy with vaccines. I think the number of vaccines a child gets today vs when we were kids is ridiculous. Its just too many too soon! Its alarming. Autism aside, the number of vaccines they want a child to get at such young ages is very alarming. The commercials that are ALWAYS on the television…the way they sell their drugs with jingles and such…its scary.
When my daughter was born two years ago I took her for her 2-month well check and the ped said ok, today she will be getting 8 shots. She wrote them out on a pc of paper…some with more then one vaccine in the jab. I told her I didn’t feel comfortable allowing my lil 2month old baby 8 shots. She pulled the paper from me and scratched off 4 and said ok, she really only needs 4. WTF???? What is that??? I told her I still don’t feel comfortable. I had the HIB and never returned. She is thriving and doing awesome in general. She’s never had an ear infection, like her older brother…even thou he was vaccinated against ear infections but yet received countless number of ear infections…interestingly too right after each vaccine.
There is untruths being told and its not from the non-vax group.
Guest Blogger…you said…”problem is that GFCF is held up as a cure for autism”
I personally have never heard a parent with a Autistic child who is on the diet ever say it was a cure. And if you have heard them say maybe they meant cure in the sense that their child is a new child that they don’t have autistic type symptoms while on the diet. Obviously, when one goes off the diet and the symptoms return then you are right…it isn’t a “cure” per say.
And as far as testing…as I stated earlier…its been 4yrs and still with every test taken nothing has been shown in a test that my son is suffering from any allergy however, I did a process of elimination with foods and have (took me a year) realized which foods bother him. You just can’t always rely on tests. A ped GI doc even said, such allergy tests can give be deceiving and the allergy’s don’t always show up.
Jen,
Pet peeve of mine: unless you are actually a researcher, no, you did not do 4 years of extensive research. You may have done a thorough literature review, but you didn’t do a bit of research.
And you make the mistake of availability heuristic and assume that your personal experiences and what you can readily recall are representative of objective reality.
And considering that the antigen load is far less now than it was twenty years ago, your argument that is far too much far too soon is not based on the available science.
Here’s a really super sweet story in hopes to end this argument on a happy and sweet note…
http://www.torontosun.com/sports/columnists/bill_lankhof/2009/09/23/11066346-sun.html
GFCF is held up as a cure for autism:
Karen Seroussi, Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother’s Story of Research & Recovery: Convinced that the inability to digest certain proteins was contributing to her son’s condition and that his autism was related to his reaction to MMR vaccines, Seroussi eliminated suspect foods from his diet; he made such dramatic improvement that, by age four, he was functioning normally.
Jenny McCarthy, ” There are some who wonder what we mean when we say “recovering” from autism. They confuse the word recover with cure. While you may not be able to cure an injury caused in a terrible car accident, you can recover; you can regain many skills that you once lost. In the case of autism, we think there are treatments that often bring about such healing, so that the observable symptoms of the condition no longer exist. Even though we may no longer see any symptoms of autism, we can’t say a child is “cured” because we do not know what they would have been like had they never been injured.
We believe what helped Evan recover was starting a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines. Once Evan’s neurological function was recovered through these medical treatments, speech therapy and applied behavior analysis helped him quickly learn the skills he could not learn while he was frozen in autism. After we implemented these therapies for one year, the state re-evaluated Evan for further services. They spent five minutes with Evan and said, “What happened? We’ve never seen a recovery like this.”
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.
Jen,
I would have little to say against someone who evaluated the safety of, for example, DMPS and MMR and found BOTH or NEITHER unacceptable. At least that would be informed and consistent. I have yet to see anything of the kind among biomed/anti-vaccine groups. What seems to me to be happening instead is that vaccines are instinctively distrusted simply because they are made by “Big Pharma”, but instinctively trust “biomed” remedies because they are made or marketed by small companies who present their wares as “natural” etc.
Also, a joke on comparative risk:
Traveler to Native: “Do you worry about being attacked by Piranhas?”
Native: “No… The alligators keep their numbers down.”
Hi Kwombles –
The ‘reduced antigen load’ argument is a horrible argument based on a gross over simplification and reliance on people not applying primitive logical filters. The problem with this argument is that the entire decrease in antigen load is from the change from DTP to DTaP.
Take a look at the fancy graph on page 4 of this article by the guy that everyone either loves to love or loves to hate.
Click to access Pediatrics109.pdf
If antigen loads were a meaningful measurement of vaccine safety levels, then our current schedule is roughly double as dangerous as the time period after DTaP was introduced, by varicella, Hib, and rotovirus were introduced.
That being said, ‘too many too soon’ is a bit simplistic; unfortunately, it may have science to back it up. For example, you might try looking at:
Postnatal Programming of the Innate Immune Response
Or
Early-life programming of later-life brain and behavior: a critical role for the immune system
Both are review papers that describe two dozen or more articles wherein researchers have found that simply challenging the immune system during critical developmental timeframes has permenant, modifications to immune function, behavior, and stress response. In several experiments, use of either cytokine inhibitors or direct use of inflammatory cytokines have been used to validate that it is the immune response, as opposed to the bacterial or viral mimic in use that is causing changes. Even more troubling are other findings involving the ‘double hit’ hypothesis showing that repeated challenges have syngergistic effects on functions such as seizure succeptibility and immune imbalance.
We’ve taken to believing there is a free lunch and we are clever enough to fool a system that has developed over millions of years; I’m not so sure.
– pD
pD–
Dr. Offit made that paper available on the pediatrics website–much easier to read than that scan:
http://pediatrics.aappublications.org/cgi/reprint/109/1/124
Kwombles said…
“Pet peeve of mine: unless you are actually a researcher, no, you did not do 4 years of extensive research. You may have done a thorough literature review, but you didn’t do a bit of research.”
http://en.wikipedia.org/wiki/Research
“Research can be defined to be search for knowledge or any systematic investigation to establish facts. “Research can use the scientific method, but need not do so.”
Also, data…http://en.wikipedia.org/wiki/Data
“Data can be the basis of graphs, images, or observations”
My research on this topic has been both basic and observational.
I followed the process.
* Formation of the topic
* Hypothesis
* Conceptual definitions
* Operational definition
* Gathering of data
* Analysis of data
* Test, revising of hypothesis
* Conclusion, iteration if necessary
I also majored in sociology so, kinda know a little about research. I used literature review for my research yes you are right and no I did not go to a lab and test out a vaccine. I think you need to be more aware of the what the word research means in its entirety.
I’d say I was sorry, and that I didn’t mean to be rude, but a friend of mine has pointed out on her blog, that when we say that kind of stuff, we probably do mean to be.
So, I do mean to be somewhat scathing in my response. I’d say oops, my bad, but, oddly enough, no, after reading Jen’s shenanigans off and on all day and her sense of moral superiority, to read her latest trot-out where she invokes wiki and her major in one fell swoop and say her research has been basic, ah well. I’m sure folks will understand that the temptation to be pissy is entirely too much to resist at this point.
Ah, Jen, you trotted out Wiki; I have to bow before that, how can I not? I am aware of the use of the term research by the public and I’m pointing out that it is not in fact research. It is a literature review. And when you use research instead of literature review, well, it’s kind of like using podium for lectern. I may get what the public use of the term is, but I also know it is a misuse of the term. It may be pedantic, but there is a place for precision of language. And that tends to be, certainly, in scientific matters.
Gosh, if you hadn’t made me aware of the scientific process, I might have been lost. So, you’re telling me you’ve carried out basic research. You said you followed the process. On what? On your child? How did you account for confounding variables? Really, and then you retested? Do tell, let us benefit from your knowledge. After all, by asserting that you kinda know a little about research, you are appealing to authority, right?
Wow. I am humbled before your greater information. Forget that you’ve provided no evidence whatsoever. Anecdotes and the contention that it’s mean to pick on parents, as well as sockpuppets and accusations that calling you on that is calling you names, that’s what you have provided today. Forget that we are almost entirely either parents of autistic children or autistic here. You know better. Again, I have to say, wow. Thanks, I’m sure we all feel chagrined.
I’m going to try to have the last word here, but I’m sure it won’t stick.
Still . . .
The same old arguments are trotted out here. And we are preaching to the (two different) choirs. We can argue amongst ourselves for an eternity.
The problem, for me, lies with the echo chamber of the “autism biomedical treatment” yahoo groups. This is where the opportunity lies to change some minds. There are new parents joining these groups every day, credulously sucking up all the woo they encounter, in a desperate effort to “normalize” “cure” or “recover” their child.
I’d urge all of you who really care about children to join one of these groups. Please be forceful, and argue against (or for) the “treatments” you think have some evidence. These groups are calling out for some balance. Right now they are an echo chamber, and a huge source of income for the quacks.
Remember, Mary spends about $2K a month on treatments for her child. Someone is getting rich. And Saul is suffering.
Guest Blogger, you are a pathetic excuse for a human being. You write a long post critical of a mother who is attempting to help her child the best way that she knows how. You decide that you don’t like what she is doing so you cherry pick her words and hold her up for public ridicule.
If you are really the parent of any child, let alone one with special needs, you should know better.
You don’t even have the courage to stand up and take credit for your own words.
Truly pathetic.
Kwombles,
the whole idea of what is research bothers me as well. I can “research” what movie to see. I can “research” what is the safest car.
More importantly, my doctor can “research” what the best treatments are for my family.
None of these are on the same level as “research” where one finds information previously unknown to anyone. It is unfortunate that they use the same word.
Wow! Did I ever say that the mother who “treated” her child with the big list of “treatments” which BTW, includes many prescription drugs, was anything but a caring, if mislead parent? The mother, who, for your information, also posts under a pseudonym. And no wonder, with hatred out there like this.
And by revealing this little dirty secret of the “autism biomedical treatment” industry, you think I am truly pathetic. You just don’t like to see the light cast on your tiny little (echo chamber) corner of the internet.
Guest Blogger:
Back when I was on the listserv over five years ago many of us were told we were not doing enough if we did not do the supplements, the chelation, and take the kids to a DAN! doctor. This was even though most of us had our kids in private speech and/or occupational/physical therapies, plus various specialist doctors like neurologists and developmental pediatricians.
The chelation therapy, especially with IVs scared me. When I posted my reservations on the listserv, I got a personal email telling me that I was “dangerous” for posting my views. So I quit the listserv. And then half a year later, a kid going through IV chelation (strapped to the table!) died.
i think it’s funny that i have posted more messages and they haven’t been posted! afraid to put them out here?
Spare me, please. I have deleted very few non-spam messages in the entire time I have worked on this blog.
Tell you what. Copy every message and email to me at sullivansjourney@gmail.com and I’ll make sure it gets published.
Hi Sullivan –
Thank you. I cannot figure out why, but for some reason I sometimes have problems finding that article. You are correct in that it is much simpler to read.
– pD
RESEARCH
Stony Brook: Hep B Vaccine Linked to Autism
“Hepatitis B Vaccination of Male Neonates and Autism”
Annals of Epidemiology Vol. 19, No. 9 ABSTRACTS (ACE) September 2009: 651-680 p. 659 (Medical research journal. – ed) CM Gallagher, MS Goodman, Graduate Program in Public Health, Stony Brook University Medical Center, Stony Brook, NY
tinyurl.com/mwfeo4
PURPOSE: Universal newborn immunization with hepatitis B vaccine was recommended in 1991; however, safety findings are mixed. The Vaccine Safety Datalink Workgroup reported no association between hepatitis B vaccination at birth and febrile episodes or neurological adverse events. Other studies found positive associations between hepatitis B vaccination and ear infection, pharyngitis, and chronic arthritis; as well as receipt of early intervention/ special education services (EIS); in probability samples of U.S. children. Children with autistic spectrum disorder (ASD) comprise a growing caseload for EIS. We evaluated the association between hepatitis B vaccination of male neonates and parental report of ASD.
METHODS: This cross-sectional study used U.S. probability samples obtained from National Health Interview Survey 1997-2002 datasets. Logistic regression modeling was used to estimate the effect of neonatal hepatitis B vaccination on ASD risk among boys age 3-17 years with shot records, adjusted for race, maternal education, and two-parent household.
RESULTS: Boys who received the hepatitis B vaccine during the first month of life had 2.94 greater odds for ASD (nZ31 of 7,486; OR Z 2.94; p Z 0.03; 95% CI Z 1.10, 7.90) compared to later- or unvaccinated boys. Non-Hispanic white boys were 61%less likely to have ASD(ORZ0.39; pZ0.04; 95% CIZ0.16, 0.94) relative to non-white boys.
CONCLUSION: Findings suggest that U.S. male neonates vaccinated with hepatitis B vaccine had a 3-fold greater risk of ASD; risk was greatest for non-white boys.
cristel king,
did you really think that abstract was convincing? I didn’t. Out of all the questionable science that gets trotted out to push the ideas that vaccines cause autism, that is one the most obviously weak.
Reading an abstract someone else brings to light isn’t even research. I read that abstract a long while back when it was epublished ahead of the print date. Even that isn’t really research. I got some of the source data. Even that isn’t really research.
What the authors found was that age (or birth year) was a risk factor for parents to report their kid as autistic. No big surprise there. Anything that changed with time would have appeared to correlate with autism.
Even with that, Prometheus notes that there is no significant difference between the autism prevalence for the hepB vaccinated/non-hepB vaccinated groups. Therefore, no conclusions can be drawn.
I bring this up to point out–I have looked into this in much greater depth than it appears you have. I don’t consider it research. Why do you?
Lurker, Jake Crosby and people who are actually important are routinely allowed to comment on this site, including members of the AoA team, Thoughtful House and Generation Rescue. There’s very little that could be posted that hasn’t been allowed on and discussed before.
Also, discussion of that study should be done in the thread that is already open.
It would be nice if you actually did more than cut and paste.
Can children with autism recover? If so, how?
Helt M, Kelley E, Kinsbourne M, Pandey J, Boorstein H, Herbert M, Fein D.
Department of Psychology, University of Connecticut, Storrs, CT 06268, USA. molly.helt@uconn.edu
Although Autism Spectrum Disorders (ASD) are generally assumed to be lifelong, we review evidence that between 3% and 25% of children reportedly lose their ASD diagnosis and enter the normal range of cognitive, adaptive and social skills. Predictors of recovery include relatively high intelligence, receptive language, verbal and motor imitation, and motor development, but not overall symptom severity. Earlier age of diagnosis and treatment, and a diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified are also favorable signs. The presence of seizures, mental retardation and genetic syndromes are unfavorable signs, whereas head growth does not predict outcome. Controlled studies that report the most recovery came about after the use of behavioral techniques. Residual vulnerabilities affect higher-order communication and attention. Tics, depression and phobias are frequent residual co-morbidities after recovery. Possible mechanisms of recovery include: normalizing input by forcing attention outward or enriching the environment; promoting the reinforcement value of social stimuli; preventing interfering behaviors; mass practice of weak skills; reducing stress and stabilizing arousal. Improving nutrition and sleep quality is non
ps. I AM part of generation rescue.
Christel King,
When I repeatedly told AOA they overstated Paul Offit’s Rotateq income by $39M, they pulled the only correction that got up at all and said it was “posted in error”. So who are you to complain?
The Severity Of Autism Is Directly Linked To Heavy Metals In The Body
From cafemom.com. bit.ly/2CWgUd
The study, “The Severity of Autism Is Associated With Toxic Metal Body Burden and Red Blood Cell Glutathione Levels” has determined that the severity of autism is directly linked to heavy metal levels. In 2007, the Centers for Disease Control reported that 1 in 150 children were diagnosed with autism and boys out number girls four to one.
This study is one of three papers that were generated from the original research study of determining DMSA’s effectiveness in the autistic population as a treatment option. DMSA is a licensed medication for treating lead poisoning and indicated in cases meeting toxic criteria. DMSA, commonly known as “Chelation Therapy” is widely used off-label for other metal exposures, e.g. mercury. A Chelator is a medication that binds to heavy metals in the body and aids in its excretion. In this study, DMSA was given to 63 children (ages 3 -8 years) in order to determine the levels of toxic metals in their body. It was clearly indicated that higher levels of toxic metals was directly associated with more severe autistic symptoms. This is one of the strongest studies to date linking the severity of autism to heavy metal toxicity.
The primary investigators on this study were Matthew Baral, N.D., Chair of the Department of Pediatric Medicine and Associate Professor of Pediatrics at SCNM and James B. Adams, Ph.D., Adjunct Professor in the Division of Basic Medical Sciences at SCNM.
To read the study in its entirety, go to bit.ly/IAsvF
Cut and pasting of studies is not a very good technique, nor is it very considerate to those of us who not only have to wade through it but also have to second guess the intent and arguement of the poster, only to find the study has been discussed here already over 9 months ago as a basic google search would have shown.
Omega-3, Vitamin E Mix Shows Potential
For Autistic Speech
By Stephen Daniells. bit.ly/2hqU8h
A combination of omega-3 fatty acids and vitamin E may lead to speech improvements in autistic children with verbal disorders, suggests a new study.
Verbal apraxia is a speech disorder common in autism, and an estimated 50 per cent of children with autism have apraxia. Furthermore, many thousands more are reported to have apraxia but are not autistic.
According to new research published in the journal Alternative Therapies in Health and Medicine, daily supplements of omega-3 and vitamin E were associated with improvements in speech, imitation, eye contact, and behaviour.
Claudia Morris from the Children’s Hospital and Research Center Oakland (CHRCO) and Marilyn Agin from the Saint Vincent Medical Center in New York recruited families with experiences of omega-3 fatty acid and vitamin E supplementation. The majority of families used doses of 800 IU of vitamin E, while the average omega-3 consumption was 280 to 840 mg DHA and 695 to 2,085mg EPA.
The ratios and dosages determined through the work with the study led to a patent for Dr Morris through the CHRCO (US patent # 2008/002216). The patented formulation is licensed exclusively to Illinois-based NourishLife from CHRCO.
Kate Bolton, VP of speech nutrients at NourishLife, told NutraIngredients: “The results of the study are significant in that 97 per cent of the participants with apraxia and/or on the autism spectrum reported dramatic improvements while taking a combination of omega-3 fatty acids and vitamin E.
“The study represents the largest summary of children with apraxia to date,” she added.
“Antidotal evidence had previously shown that omega-3 can help children with apraxia and those known as ‘late talkers’. The researchers discovered that they symptoms presented by children with apraxia mirror those of vitamin E deficiency,” said Bolton. “The addition of high dose vitamin E with omega-3 fatty acids is the breakthrough.”
Study details The researchers recruited 187 children with verbal apraxia who had received vitamin E plus polyunsaturated fatty acid supplementation. They noted that verbal apraxia is not only a speech disorder but rather a complex syndrome that affects a person’s neurologic function.
A subgroup of children emerged, characterised by autism, sensory issues, low muscle tone, food allergy, coordination problems, and impaired gastrointestinal function.
The presence of multiple allergies and intestinal problems are associated with nutritional deficiencies including vitamin E, omega-3, and carnitine. Following supplementation, 181 families (97 per cent) reported “dramatic improvements in a number of areas”, said the researchers. These included speech, behaviour, eye contact, and other sensory issues.
“We characterize a novel apraxia phenotype that responds to polyunsaturated fatty acids and vitamin E,” wrote the researchers.
“Appropriate screening may identify a subgroup of children with a previously unrecognized syndrome of allergy, apraxia, and malabsorption who are responsive to nutritional interventions in addition to traditional speech and occupational therapy,” they added.
“Controlled trials in apraxia and autism spectrum disorders are warranted,” concluded Morris and Agin.
Bolton confirmed that work is indeed ongoing in this area, with the a clinical study and protocol designed to continue to understand the impact omega-3 and vitamin E have on autism and verbal apraxia, and to begin to determine the underlying mechanisms in verbal apraxia. However, funding for the study is yet to be secured, she said.
Source: Alternative Therapies in Health and Medicine July/August 2009, Volume 15, Number 4, Pages 34-43 “Syndrome of allergy, apraxia, and malabsorption: Characterisation of a neurodevelopmental phenotype that responds to omega-3 and vitamin E supplementation”
Authors: C.R. Morris, M.C. Agin
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you said you wanted research! you won’t take my word,. you can’t have it both ways. wasn’t here 9 months ago, had no need to be. you attacked a fellow mom which by the way I have been corrisponding with “mary” today and she deserve a voice on her side with the very personal attacks on her life! so I am posting some on those suppliments also under attack.
Hi Guest Blogger –
Leaving so soon? You’ve generated a lot of traffic, way more than I’ve seen on this site in a long time. Maybe ever.
The funny thing is that you are making headway in the opposite direction. The neophyte parent who runs across this blog posting is going to find someone who has meticulously combed through thousands of personal posts by someone with the intent purpose of airing dirty laundy, accusations of scientific illiteracy and unsubstantiated dime store psychoanalysis. This is, in large part, a representative sampling of what the ‘anti biomed’ crowd has to offer, and I hope it gets aired frequently; it will simply drive more people to try to help their children with medical interventions. Please, please, keep it up.
As far as echo chambers go, the irony again looms very large. I will provide an example.
(From Guest Bloggers response to me, comment 64227)
You may not be aware of this, but we have two open label studies of IVIG showing improvements in subsets of children with IVIG, including one patient who showed complete remission of autistic behaviors. Tragically, after treatment stopped, the child experienced a complete regression.
Intravenous immunoglobulin treatment of children with autism.
Dysregulated immune system in children with autism: beneficial effects of intravenous immune globulin on autistic characteristics
There is a deep body of literature concerning immunological abnormalities in the autism population; including of all things, decreased levels of IgG.
Reduced levels of immunoglobulin in children with autism correlates with behavioral symptoms
Treatment with IVIG is being investigated for neurodegnerative diseases; including those with neuroinflammatory components. Here researchers found that previous treatment with IVIG reduced the risk of Alzheimer’s. Here is another one concerning IVIG use in a variety of conditions, with a mechanism of action involving a reduction in pro-inflammatory cytokines. There are also several papers on the mechanisms of action by which IVIG achieves is immunomodulatory, down regulating effects; among the listed pathways of action are down regulation of macrophages, decreased entry of immune cells into the blood brain barrier, and normalization of cytokine balances.
In autism the autism realm, we know without any doubt that children with autism generate pro-inflammatory cytokines at rates much higher than their undiagnosed peers to a variety of stimulants. Enstrom, Ashwood, Jyounouchi all showed this, among others.
Further, we know that if you have autism, you are more likely to have increased levels of MIF, a known promoter of the innate immune response; highly correlated with inflammatory diseases like asthma and arthritis.
Within the CNS, our available evidence tells us that people with autism are more likely to have an ongoing immune response, as measured by Vargas, Li, Chez, and Garbet.
So you see, IVIG as a “treatment” for autism isn’t a matter of someone throwing darts at expensive options, but instead, a targeted treatment based on a growing body of evidence. Clearly, there is a large autoimmune component to autism, and IVIG is a safe, powerful weapon against autoinflammatory immune disorders.
As someone who has been spending their time disdainfully reading and cataloging hundreds, or thousands of other peoples posts regarding how they are treating their child, the fact that you might not have known about any of the above studies seems understandable. But to then go on and complain about echo chambers and the dangers of unqualified opinions floating around the internet is a truly amazing display of irony.
– pD
taking and extracing 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.
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.