Respectful Insolence

Part 1 is here.

Part 2 is here.

Part 3 is here.

Part 4 is here.

I realize I say these things again and again and again, but they bear repeating because together they are a message that needs to be spread in as clear and unambiguous a form as possible. First, whenever you hear someone say, “I’m not anti-vaccine,” there’s always a “but” after it, and that “but” almost always demonstrates that the person is anti-vaccine after all. Second, for antivaccine loons, it’s always about the vaccines. Always. It’s not primarily about autism advocacy; it’s primarily about the vaccines and blaming them for autism. Autism advocacy is either a secondary consideration subsumed to the needs of trying to convince people, against all science and reason, that vaccines cause autism, or anti-vaccinationists assume that anti-vaccine activism and autism advocacy are one in the same thing.

For example, just this morning, here is someone named Mary commenting at AoA:

Why is being called anti vaccine bad? I consider it like being called “informed, intelligent and free thinker.” Call me anti vaccine all day and night, I LOVE it. Vaccines are a hoax.

Hey, at least Mary’s honest.

Then we have David Burd, also commenting at Age of Autism:

By itself an injection with its toxic ingredients bypasses the gastrointestinal protections provided by nature.

By your second vaccination, your first shot (for measles), your 14 months maturity was far past just-born infant fragility. The Future will find all these injections into infants during their earliest months on Earth to be the biggest and harmful medical mistake ever perpetuated.

Dr. Josef Mengele’s ghost must have coined the “well baby” visit.

Oh, no, the denizens of AoA aren’t anti-vaccine. Not at all. Many of them simply appear to think that giving vaccines at well baby visits are the equivalent of Nazi crimes committed during horrific and utterly unethical medical experiments on prisoners that killed thousands upon thousands while maiming even more.

But don’t call them “anti-vaccine.” Except Mary, of course. She likes it.

Comments

  1. #1 Rene F. Najera
    January 18, 2011

    If it quacks like a duck, walks like a duck, and looks like a duck… Then AoA might want us to call it a “dog,” I guess.

  2. #2 Anglachel
    January 18, 2011

    Hello folks! Long time reader of Orac’s, first time commenter. I am so tired of all these wack job nut balls telling me I’m brain damaged from mercury or vaccines or both that sometimes, I really do what to put my head through that wall right there just to my left! I have read A of A, I refuse to even comment there! An old t-shirt saying that use to be funny no longer is “Never under estimate the Power of stupidity in large numbers!”

    The one time I got into an argument with one of them I told them that I have pictures of my brain. I had to be tested some years back to see if there was siezure activity going on in my brain. And guess what? No brain damage! I offered to even scan the images and send them to the bird brain! I heard nothing after that but the sound of crickets.

    This is why I deeply appreciate your blog here! It’s refreshing, often witty (which I LOVE), and most of all, IT’S BASED ON FACT!!!! Keep on with the good work! I salute you sir!

  3. #3 Nescio
    January 18, 2011

    Be reasonable. Those doctors first invent all sorts of diseases, then, coincidence of coincidence, find a “cure” which they want to sell to you. It is not as if the when-you-use-natural-products-it’s-save-movement, like Big Pharma, is trying to sell us all kinds of “safe” remedies.

    Oh, wait ………

  4. #4 Matthew Cline
    January 18, 2011

    And augustine will comment to say he’s not anti-vaccine because he doesn’t want to ban vaccines in 3… 2… 1…

  5. #5 cervantes
    January 18, 2011

    Hey Nescio, I don’t think doctors “invented” measles, mumps and rubella.

  6. #6 Max
    January 18, 2011

    Cervantes, you know, you may be right. But it sure is a hilarious thought. Think of it this way: doctors invented the diagnoses, and without that, we’d just be dying and spreading disease without knowing what to call it. So in a way, it really is the doctors’ fault.

  7. #7 Anglachel
    January 18, 2011

    Yeah, um..those have been around for quite sometime with a very long and extensive history. Oh wait, I know that is what “they” want us to think right? And who is “they” again? Oh yeah, our Reptilian Overlords who run Big Pharma!

    *smacks self in the head*

    Makes as much sense as my friend who thinks the FBI is watching him. No reason why, he’s just CONVINCED!!

  8. #8 Nescio
    January 18, 2011

    @Cervantes

    Technically speaking I posit that indeed science invented diseases. Not created them, but the pradigm and definition we use today. Did we have rubella in 5000 BC, probably. However, and that was my point, it was not recognised as such. Heck, certain inflictions (i.e. SLE, CVA, AMI, et cetera) that do not have explicit symptoms may not have been seen as disease before science made it possible to establis its existence.

    But, if this slightly philosophical view is offensive to you it is possible to interpret it as satire.:)

  9. #9 Anglachel
    January 18, 2011

    In that case I will ask you to forgive my snark Nescio. You wouldn’t believe the bizarre things I am hearing around the grapevine today! It brings the sarcasm out of me! My apologies!

  10. #10 Lawrence
    January 18, 2011

    I believe we’ve seen comments where people have tried to claim that things like Cancer didn’t exist until it was first diagnosed – as if the very act of diagnosing the disease creates it.

    AoA isn’t anti-vaccine, they are obviously Pro-Crazy.

  11. #11 Angela Sodee
    January 18, 2011

    @Lawrence I will see your ‘..comments where people have tried to claim that things like Cancer didn’t exist until it was first diagnosed’ and raise you a “know of persons who believe that the Biopsy of a tumor caused the cancer”.

    My mother refused to discuss the reason the biopsy was done (huge lump in armpit) and insists that a simple fungus infection was converted to cancer by the biopsy.

    There is no reasoning with those that are this wooful.

  12. #12 Scott
    January 18, 2011

    Not only that, it’s a common theme of the antivax loons in particular – autism supposedly didn’t exist pre-Kanner, so obviously it’s caused by something environmental around that time, and oh la! Vaccines.

  13. #13 Chezjuan
    January 18, 2011

    I’m not anti-anti-vaccine, but I think that if you don’t want to vaccinate you need a valid medical reason to be able to opt out.

  14. #14 Pieter B
    January 18, 2011

    Nescio, your point seemed to me to be that Big Placebo is no less motivated by profit than is Big Pharma. After all, they invent conditions that you didn’t know you had until they tell you you have it and they’ve got
    i just
    the remedy for it.

  15. #15 Yojimbo
    January 18, 2011

    Lawrence @10 – That is not unlike the clumsy geologist who bumped into his seismograph and set off a major earthquake in California.

  16. #16 turnipseed
    January 18, 2011

    Does David Turd, er, Burd realize how many of the fragile “just born” used to die of infectious disease?

    We can only hope that Mary doesn’t procreate. Sadly, she is not alone in taking pride in her stupidity.

  17. #17 Nescio
    January 18, 2011

    Pieter B @14, You might have a point in pointing out my initial point.(could not resist) Thanks for noticing my satire on Big Placebo making big bucks while its adherents (the Insect overlord?) invoke the Big Pharma Gambit, which sounds stunningly ironic.

    If Orac had lend me one of his ironymeters it probably would not have survived :)

  18. #18 morgan
    January 18, 2011

    I received email from one who told me she was Not A Conspiracy Theorist (but she does believe that Big Pharma controls the scope and direction of research, in particular suppressing any and all research about Dangers Of Vaccines).

  19. #19 Nicole
    January 18, 2011

    I see so many out there that seem to be either “far left” or “far right” Either you are an anti vaccine nazi who equates giving jabs to your baby to child abuse or someone who regects anything that dosen’t have allopathic medicine’s stamp of approval on it.

    Just like traditional medicine, all the alternative “natural” treatment companies are out to make a profit. I certainly do not advocate blindly buying every natural remedy available just because its advertised. Some of it is complete snake oil.

    What is wrong though, with questioning vaccines and other treatments?

    What is wrong with using a combination of traditional medicine and things like vitamin supplementation to help yourself or your child?

  20. #20 Nicole
    January 18, 2011

    Nicole:
    Nothing. But “traditional medicine” [scare quotes intentional] did not seem to stop the smallpox virus from ravaging the Native Americans, or indeed anybody in the world until vaccination.

    And vaccines have been questioned and the answer is “YES!”

  21. #21 KeithB
    January 18, 2011

    Sorry Nicole, that was me above. Put the wrong name in the Name: field. Rats.

  22. #22 Chris
    January 18, 2011

    Nichole, yes, it is okay to question vaccines. But you can’t scream and shout when the answers are not what you want them to be. There have been over a dozen studies done on MMR alone, and it has not been shown to be associated with autism.

    Also, research on vaccines is always going on.

    If you have actual evidence that the vaccines carry more risk than the diseases, please present it. But remember it has to be real research, and not a link to a random website.

    As far as “traditional medicine”, please define that. What do you mean? Is it something to do with blood letting, or wearing a garlic around your neck. Please be specific.

    Vitamin supplementation has also been researched. This is why we do not see much in the way of rickets, or scurvy or developmental problems due to iodine deficiency. It is also how we know that too much can be bad, like Vitamin A… and that children have been poisoned by iron supplement.

  23. #23 Chris
    January 18, 2011

    Oops, I misspelled your name. Sorry, Nicole.

    I would also like to add is that is okay to question vaccines, but please make sure that you do not make the following mistakes:

    1) Why are they injected directly into the bloodstream?

    (um, no… vaccines are either injected into muscle, inhaled through the nose or taken orally)

    2) Why do you care if your kid gets the vaccine, they are protected?

    (um, no… vaccines are not 100% effective, some kids do not produce an immune response, plus some people have conditions that prevent them getting vaccines, they depend on herd immunity)

    3) What about the toxins?

    (um, no… the dose is important, and like all medical interventions they are tested for safety. Many of the declared “toxins” are sometimes made in your own body, or you consume multitudes more than in any vaccine).

    There are others, but you get the gist. Do a little bit of research first (on this blog using the search box on the upper left of this page, the CDC Pink Book and ScienceBasedMedicine, and then ask knowledgeable questions.

  24. #24 Nicole
    January 18, 2011

    First of all because of a genetic heart condition ( hypertrophic cardiomyopathy) my heart has stopped twice in the past year and a half. The first time was for several minutes. English as a subject has never been my strong point but it really isn’t now.

    I tell you all this to say please be patient with me and my poor spelling, grammar and vocabulary.

    Ok I see that “traditional” was a poor choice of words :) What I actually meant was allopathic, the normal doctors using widely accepted medical treatments for diseases or the prevention of disease.

    I do understand the assumption given the original post I commented on but,questioning vaccines (at least in my case) does not equal screaming vaccines cause autism. My autistic son had his school entry vaccinations at 4 to go to preschool. I weighed what info I had about vaccinations possibly causing autism versus the risks of putting him into a classroom with close contact with other children while unvaccinated. Ive seen effects of a couple of vaccine preventable diseases and I didn’t want to see it happen to my son on top of autism. I do feel that my son’s autism has environmental causes but that is a whole different post altogether.

    On the other hand when I asked our ex-pediatrician to answer my specific questions about possible risks versus benefits for my girls I quickly dismissed as an over paranoid mother. The only answers (if you can call it that) I got was one page paper telling me vaccines are important and safe thrown at me.

    As far as other treatments like vitamin supplements , special diets, etc…well, I’ll give an example of personal experience. When I first heard about the gfcf diet it was dismissed as craziness with no evidence that it helped autistic children. Finally 2.5 years later some doctors start to accept that it might be helpful and I finally find a dr who is willing to refer me to a nutritionist (referral required for insurance) who helps me get my son on a gfcf diet while assuring that he is getting adequate nutrition. After 3 months his violent behavior improved greatly. This was after a year of trying different medications such as risperdol and seeing little improvement.

    My son as many with ASD’s has some significant bowel issues. He is also underweight despite eating me out of house and home. His Dan Dr is doing testing for parasites, bacterial infection, and yeast overgrowth as possible causes. He is the first that hasn’t dismissed his eating on non food items such as rocks, his ex-rays of his bowels being extremely backed up.

    If something comes up on the tests and there is something we can do to treat it then I’ll weigh the benefits of the proposed treatment against the risks and go from there. I have no expectations of any of these treatments reversing my son’s autism. I would be very happy to have an autistic son without constant tummy issues :)

    I’m not saying one should blindly take large amounts of any vitamin. However I don’t think supplementation for autistic children should be dismissed as crazy or dangerous.

  25. #25 Vince Whirlwind
    January 19, 2011

    @ChezJuan – I’m with you!

    @Nicole – What you write makes plenty of sense, but you have to remember that understanding enough about how vaccines work in order to make a competent risk assessment would for some require many, many hours of study, and for others be something they are not intellectually equipped to do. For this reason, those educationally and intellectually equipped to provide the expert advice have done so and I can well understand the average GP (who may or may not actually understand vaccines properly themselves) not being happy to have you demand they verbally summarise a whole realm of medical knowledge. Do your own study and/or take stock of relevant expert opinion.

    Anyway, for the conspiracy theorists: when Wakefield originally developed his idea that MMR was bad, he applied for funding from his employer (the National Health Service) to see if there was any link between MMR & autism. The UK government obviously had not received the memo about “suppressing any and all research about Dangers Of Vaccines”. They gave him 50,000 pounds to look into it. I think anybody who believes that the UK government could pull off any kind of conspiracy has a screw loose. Remember the “dodgy dossiers”? Two of them! Designed by the PM’s office to help start a war and transparently built of the purest bullshit.

  26. #26 Chris
    January 19, 2011

    Nicole:

    First of all because of a genetic heart condition ( hypertrophic cardiomyopathy) my heart has stopped twice in the past year and a half.

    My son also has hypertrophic cardiomyopathy, so you are not allowed to use that for special pleading.

    What I actually meant was allopathic, the normal doctors using widely accepted medical treatments for diseases or the prevention of disease.

    So you really meant real medicine. Like antibiotics, beta-blockers, vaccines, surgery and what is generally taught in a real medical school. Just call that real medicine. That means no DAN! doctors.

    My autistic son had his school entry vaccinations at 4 to go to preschool.

    If he was diagnosed before he had vaccines, why even bother trying to claim that they were a cause of autism?

    My son is also disabled, not due to a vaccine. He had seizures before any vaccine, and again while sick with a real disease.

    His Dan Dr is doing testing for parasites, bacterial infection, and yeast overgrowth as possible causes.

    He is a quack, and you are being ripped off.

    He is the first that hasn’t dismissed his eating on non food items such as rocks, his ex-rays of his bowels being extremely backed up.

    Here is a term you need to look up: pica disorder.

    I’m sorry you had a lousy real doctor before. But now that you know that is a real disorder, find a competent physician.

  27. #27 Juha L
    January 19, 2011

    I enjoy pointing out that dear Dr Wakefield recommended vaccinating kids with a spread-out time table and that he held a patent for a vaccine. That usually sends the Wakefield-fan running with tears in his or her eyes.

  28. #28 Chris
    January 19, 2011

    Nicole, I’m sorry if I sound kind of mean. I actually understand how terrible hypertrophic cardiomyopathy, and I know what it is to have a disabled child.

    I can also sympathize with the language issue. I am sure that your area’s public health service has a web page with the information better stated than a one page piece of paper.

    I am just a bit irritated that his medical condition is trivialized by those who are “questioning vaccines.” Since he had a seizure disorder he had to rely on herd immunity for protection from pertussis, because of the scare that the DTP vaccine caused seizures. Unfortunately our county was going through a pertussis epidemic (right after Barbara Loe Fisher’s book and a very bad TV news story), so I had to be very careful with him.

    It didn’t help that he had another very serious seizure with a now vaccine preventable disease.

    He has benefited with therapies like speech therapy, occupational and physical therapy and a good special education program. Plus visits to a real psychologist, especially important after he was diagnosed with the heart condition.

    No special diets, no tests for random parasites, yeasts or bacteria. We knew from going to a good child neurologist that those would not help.

  29. #29 NZ Sceptic
    January 19, 2011

    I’m afraid whatever happens the blind still cannot see. Just look at this sciency sounding blend of baloney from a ‘web architect’ and new dad! Wouldn’t you be embarrassed to put your name to such nonsense?http://www.lewrockwell.com/orig11/robison2.1.1.html

  30. #30 Birger Johansson
    January 19, 2011

    Let’s assume a mutated form of the disease below would become entrenched in temperate regions (Europe, North America) and a vaccine became available. Would the anti-vaxxers still be opposed to vaccines or would some degree of self-preservation kick in?
    “Hemorrhagic fever claims 3 lives in western India”
    http://www.physorg.com/news/2011-01-hemorrhagic-fever-western-india.html
    I learned that people are most likely to re-assess their belief system during a crisis, so a bona fide outbreak might be the only way to get the anti-vaxxers to change their minds!

  31. #31 Nicole
    January 19, 2011

    Chris:
    I noticed in your second post to me you took on a much nicer tone and I really appreciate it. There are things in this post I feel I need to answer though so here goes ….

    Nicole:

    First of all because of a genetic heart condition ( hypertrophic cardiomyopathy) my heart has stopped twice in the past year and a half.

    My son also has hypertrophic cardiomyopathy, so you are not allowed to use that for special pleading. >>>

    Ok then Im just dumb :) and despite college can’t seem to always write clearly. I’ll try to make it better than a third grade level lol.
    I am sorry your son has HCM and I do hope that it was caught early and he has something in place to help. I have an ICD now. I cursed the thing when it went off but it surely was better than when I didnt have it and spent a week in the ICU.

    What I actually meant was allopathic, the normal doctors using widely accepted medical treatments for diseases or the prevention of disease.
    So you really meant real medicine. Like antibiotics, beta-blockers, vaccines, surgery and what is generally taught in a real medical school. Just call that real medicine. That means no DAN! doctors.>>>

    Im honestly curious and trying to understand…do you have an issue with the DAN! name? What exactly do you not like about them? My son’s pediatrician , who also has a DAN certification, gives vaccines in his office. I admit we only recently had our first visit with him but so far I feel comfortable with him because he wasn’t throwing out all kinds of crid about go but this sauna , and these homeopathy treatments and oh lets start chelation right away.

    My autistic son had his school entry vaccinations at 4 to go to preschool.
    If he was diagnosed before he had vaccines, why even bother trying to claim that they were a cause of autism?>>>

    I did NOT claim they were a cause of his autism. I just went and re-read the whole section related to that. It seems I came across as saying he only had vaccinations just before entering school. He had his baby vaccinations. He was diagnosed with autism at 23 months. At 3, almost 4 he was able to start attending a special ed preschool.I then chose to get his school entry vaccinations done.

    My son is also disabled, not due to a vaccine. He had seizures before any vaccine, and again while sick with a real disease.

    His Dan Dr is doing testing for parasites, bacterial infection, and yeast overgrowth as possible causes.
    He is a quack, and you are being ripped off.

    He is the first that hasn’t dismissed his eating on non food items such as rocks, his ex-rays of his bowels being extremely backed up.
    Here is a term you need to look up: pica disorder.

    I’m sorry you had a lousy real doctor before. But now that you know that is a real disorder, find a competent physician.>>>

    I am well aware of pica. One possible cause of pica is hookworms. Is that not a parasite?
    Another possible cause of pica is a vitamin or mineral difecency such as iron possibly caused by celiac disease.

    So we just had bloodwork done to look for defencies. About 18 months ago he had Ige allergy testing done. He came up positive for milk, gluten and sesame seeds. Thats when I finally got the referral to a nutritionist and put him on a gfcf diet..also careful to avoid sesame seeds. This has helped with a lot of his violent behaviors and decreasing the pica.

    Its also sometimes caused in developmental delayed children just because…with no medical cause to be found.
    We have behavior supports in place at school (where the majority of it happens).

  32. #32 Chris
    January 19, 2011

    Nicole:

    .do you have an issue with the DAN! name? What exactly do you not like about them? My son’s pediatrician , who also has a DAN certification, gives vaccines in his office.

    Example: Dr. Roy Kerry became a certified DAN! doctor. This was after he killed a little boy which chelation, the child’s crime was that he was autistic. Again, use the little search box on the upper left hand corner of this page. Insert the name “roy kerry”, see what you get.

    Do the same for the term “DAN!”, this is one article.

    Testing for parasites, fungus, silly things like random blood test, and “allergy” testing are sure signs of quackery. They have nothing to do with the neurological disorder.

    I am well aware of pica. One possible cause of pica is hookworms. Is that not a parasite?

    Citation needed. That means you must prove it. Because the cause of pica is often psychological.

    I am sorry, Nicole, I cannot regurgitate everything I have learned over the past ten years. It is obvious that you have been a victim of people who have taken advantage of you, and have read web sites with bad information. You really need to use the search box above, and definitely checkout the lists of websites on the side of this page, plus http://www.autismsciencefoundation.org/home.html (and the websites listed on its page).

    And definitely look for a competent pediatrician and pediatric neurologist.

  33. #33 Calli Arcale
    January 19, 2011

    I am glad your son was checked for deficiencies, as that is by far the most common cause — the body craves minerals if it’s not getting enough in the diet. (This is why pregnant women commonly get pica — and normal kids as well, because growth spurts can lead to temporary deficiencies for pretty much the same reason — greater demand for minerals while building bone.) However, please note that IgE testing cannot diagnose celiac disease, because celiac disease is not actually an allergy. I wouldn’t expect the allergy to cause a deficiency; it shouldn’t affect absorption like celiac disease does. This is where I start to get concerned about your DAN! doctor — these two conditions should not be confused, because the treatment is different. I also have some concerns about IgE testing, because it’s not as reliable as challenge testing. (Challenge testing isn’t fun, though; I’ve been through it twice.)

    I also can’t draw a conclusion from your statement that it helped with the violent behaviors and decreased the pica; even normal children can go through periods of pica that resolve on their own. And autistic children are watched more closely so we notice the phases more acutely than we might otherwise; that may make us notice associations that aren’t actually significant.

    I know; I have a kid on the spectrum myself. I notice stuff that I don’t think I would otherwise, and ask myself, “Is this her condition, or would she be like this anyway?” And I have no answer. She’s different from her neurotypical sister, but everybody’s unique — how much is the ASD, and how much is just individuality?

    She fortunately does not have too much of a problem with pica anymore; she did go through a period for a few years, but we worked out that it was more of a chewing impulse than anything else and kept her well-supplied with chewing gum. And I know how hard it can be to keep them nourished; she’s a picky eater. The gum has to be Juicy Fruit. No other flavor is acceptable, or will even be tasted. When we go to a buffet, she fills up a plate best described as “brown”, and the lack of fiber in her diet means she gets constipated frequently. ‘m just about to the point of adding Metamucil to her diet, but I’d rather she go back to eating broccoli. She will occasionally eat asparagus, at least. Like you, I have the problem of her eating lots of food but not gaining weight. She’s grown several inches in the past year but gained almost no weight. I know other kids, normal kids, who have done the same thing, though. It’s not as unusual as you might think. For my peace of mind, I do make her take a multivitamin.

    I’m glad you have behavior supports in school, not only because that’s where it most happens but because that’s probably the single most important thing you can do to make sure your child is successful. I am a strong believer in the importance of education, and kids who are constantly being sent to the principal’s office aren’t learning anything.

  34. #34 Calli Arcale
    January 19, 2011

    Chris:

    Citation needed. That means you must prove it. Because the cause of pica is often psychological.

    It’s often caused by mineral deficiencies, which may be why it is most common among children and pregnant women — both groups which tend to develop short-term mineral deficiencies due to the high demand for those minerals during growth. It is very common in children — perhaps a quarter of all children develop it at some point.

    Wikipedia mentions the hookworm link, which may be where Nicole got it. Being Wikipedia, it has a citation to a book discussing hookworm infestations in humans:
    http://books.google.com/books?id=ZIxHuhf_MEcC&pg=PA337&dq=pica+hookworm&hl=en&ei=sh0xTZmRIJKtgQf1o7DdCw&sa=X&oi=book_result&ct=result&resnum=2&ved=0CCwQ6AEwAQ#v=onepage&q=pica%20hookworm&f=false

    It’s not really something specific to hookworms, but to any blood-drinking parasite. The pica would be triggered by the anemia resulting from a large hookworm infestation. (Note: it would probably require a very large infestation to produce sufficient anemia.)

  35. #35 Chris
    January 19, 2011

    Oops, I see what went wrong. I looked for “pinworm.” Different parasite.

    Another reason for nutritional deficiencies are the restrictive diets for the allergies, for which some of the testing you mentioned may not really catch.

    I’ve been learning a bit about parasites by listening to < a href="http://www.microbeworld.org/index.php?option=com_content&view=category&layout=blog&id=99&Itemid=259">This Week in Parasitism, and I remember the pinworm bit did not include major problems (except rarely). But I had read too fast, and saw “pinworm”, not “hookworm.” Sorry.

    Still, I am baffled that if it is okay to question vaccines, why can we not question the DAN! protocols?

  36. #36 sandy
    January 19, 2011

    I realize that this is but a single anecdote, but it is about as close to a truly blinded dairy reaction as possible. During most of the time frame that our observations told us my son didn’t tolerate dairy, we didn’t know he was more than quirky and a bit peculiar.

    When my son was a few weeks old, we determined he did not tolerate milk (even second-hand) well. He was a very unhappy baby. Childhood milk sensitivity runs in the family, so we are advised to look at the possibility. I stopped drinking milk for a week or so. He seemed to improve, so we did a challenge: I ate a big piece cheesecake, he nursed, two hours later he had a screaming fit. That was the end of cow’s milk for a year.

    When he was a year old, I put milk back into his diet. Again, he seemed very unhappy and his behavior was off. The pediatrician checked him for illness (ear infection, stomach issue) and found nothing. We withdrew the milk, and after a few days he was back to “his normal.”

    Over the next few years, we slowly added milk back into his diet. In those early days, if I gave him too much milk, I was likely to get a response from pre-school that he had a bad day. Behavior issues.

    Eventually, he seemed able to tolerate unlimited milk. This is also consistent with family history and with the fact that many kids who cannot tolerate dairy protein outgrow it by the age of 5 or so.

    So why do I tell this long story? During the pre-K time frame, he received a PDD-NOS diagnosis. Up until that point, we just thought he was quirky and peculiar. Long before he had the diagnosis, there was clearly a link between behavior and dairy – and we were not influenced by any purported autism – GFCF link because as far as we knew, he wasn’t autistic. A year or so after receiving the diagnosis I couldn’t stand the pressure and did a no-dairy trial. This time there was no effect.

    My conclusion, which I’ve seen elsewhere: if a child or adult has a dietary sensitivity there may be a behavioral component. It could be as simple as physical discomfort leads to behaviors. GFCF is not magic. But, for a small number of kids eliminating a problematic food might be important.

  37. #37 Chris
    January 19, 2011

    Lactose intolerance is common in my family. Actually, it is quite common on this planet, but mostly for adults. My sister had it from birth (a 7 month premie). She grew up in the 1960s as the only kid not allowed to have milk. No diagnosis of any kind.

    Yeah, anecdotes are worth very little.

    And I am a still a bit irritated with Nicole for playing the “poor me, I have a heart condition and don’t use English very well.” I hope that the English language blog in her signature is is not Nicole’s.

  38. #38 Todd W.
    January 19, 2011

    @sandy

    Your story illustrates a problem that plagues particularly the more severe end of the ASD spectrum: how to correctly diagnose certain conditions in a non-verbal or limited-vocab individual. I agree with you that GFCF is not a magic bullet, but it can seem like it is. If someone with autism has a simultaneous food intolerance, the physical discomfort from the intolerance can certainly lead to an increase in behavioral outbursts, since that is one of the most basic ways to communicate displeasure. Remove (sometimes at random) the problem food, et voila! – the autism appears to improve because the behavioral outbursts decrease.

    GFCF can treat a food intolerance; it can’t treat autism. At least, there’s no evidence that it can, and no reason to suspect it could, other than faulty observations.

  39. #39 sandy
    January 19, 2011

    We’re in violent agreement that “GFCF can treat a food intolerance; it can’t treat autism.” And I get really frustrated at folks who think it is the be-all and end-all, because it clearly isn’t. At the same time, I do think we need to be careful not to dismiss potential food intolerance at the individual level, because for some people it is a real problem that needs to be recognized.

    It is assumed that my son had a milk protein intolerance. It’s not terribly uncommon (that’s why some kids need soy formula), and kids do generally outgrow it, unlike lactose intolerance. My niece couldn’t handle milk as a baby either, and she is not autistic.

    The GFCF as a cure-all crowd makes it a little harder to have a sane discussion on potential food issues.

  40. #40 Calli Arcale
    January 19, 2011

    Part of the problem is that food intolerances are much more common than autism (not individually, but taken collectively — there are a LOT of possible food intolerances, after all), so if you have a data set of one, it’s easy to think both conditions are related. And they might be, but with only one child you can’t really tell. Taking the holistic approach (in the literal sense of “holistic”, not the newagey sense) tells you that all of the conditions a person has will interact intimately with one another to produce the person’s overall quality of life, and that makes it well-nigh impossible to tease out correlations from just one person.

    Sandy’s anecdote is useful; I’ve said before that while anecdotes aren’t useful for determining the truth, they’re useful for helping us care. What she describes is certainly not as close to a blinded dairy reaction as she claims, but she makes reasonable conclusions from it. My cousin with celiac disease was utterly inconsolable (which could be described as a behavior problem) until her condition was diagnosed, and people with other digestive conditions tend to get cranky. I have no doubt whatsoever that clearing them up will improve mood, and behavior improvements usually follow mood improvements. Depends on the kid, of course. A more playful and inquisitive kid might get into *more* trouble once they’re feeling well. :-D

  41. #41 sandy
    January 19, 2011

    @ Calli Arcale

    You are correct that our experience was not truly blind. My use of the term blinded came out wrong. I was attempting to indicate that we were blind to the “autism” side of the equation, so we didn’t think that removing milk was going to be a super-cure. Given the family history, it was simply the first food to try, in the hopes of having a happier infant.

    Sorry about that.

  42. #42 Chris
    January 19, 2011

    And to be clear, food allergies and intolerances are not caused by vaccines. Also, celiac is a not symptom of autism, most people with celiac are function normally. There are issues when they develop early and are not caught soon enough.

  43. #43 Calli Arcale
    January 19, 2011

    Ah, I get what you’re saying now, Sandy. Sorry for the confusion. And yeah, with a family history of dairy issues, that would certainly be the obvious first try. Still a good and useful anecdote, either way. ;-) (I’m just a nerdy nitpicker on the subject of blinding.)

  44. #44 sandy
    January 19, 2011

    Thanks for the understanding.

    I guess my concern is that some children truly have a food intolerance and “improve” when that is treated. I hope we can agree that is just good medicine, and it is true for autistic and non-autistic individuals alike. However, if we appear to belittle those who think they observe a correlation, and only the DAN doctors seem understanding, then we risk driving these same people away rather than engaging in further discussion. Personally, I would like to help people understand that food intolerance can co-exist with autism and keep them firmly on the side of science.

  45. #45 Nicole
    January 19, 2011

    @ Chris

    I never meant to offend you. I didnt mean it like english was my seond language but that it takes me forever to write and I have to look up things I should know how to use of spell. My husband encouraged me to just start writing and Id get better at it. I do seem to annoy people bad bad grammar and spelling and vocab.

    Anyway I am trying to find answers to some specific vaccine questions that when I look at the cdc site it says talk to your dr. Dr. dosent even hear my concerns just heard that I have concerns and treats me like the over paranoid mother of an autistic child . I google for information and all I seem to get is a ton of pages saying there either is or is not an autism link and I don’t even care about that!!

    Obviously if my 7 and 11 year old’s aren’t autistic they are not suddenly going to become autistic…at least Ive never heard of any case.

    I must run and get my children from school. I will get back to this later.

  46. #46 Chris
    January 19, 2011

    I google for information and all I seem to get is a ton of pages saying there either is or is not an autism link and I don’t even care about that!!

    I have given you sites that are more reliable than you can find in Google. Please use them.

  47. #47 Anon
    January 19, 2011

    Chris, “food allergies and intolerances are not caused by vaccines.” What about the peanut allergies and a possible connection to the ground nut (peanut) as adjuvant in some vaccines?

  48. #48 reasonablehank
    January 19, 2011

    I’m thinking that David Burd’s comment is earily similar to Meryl Dorey’s golden moment, thusly:

    “There will come a time – I pray to God that it will happen in my lifetime – when those who have pushed vaccines upon innocent, helpless babies – doctors, pharmaceutical companies, government officials – will be proven to have lied and cheated these instruments of death into our children’s bloodstream. When that occurs, the outcry will be heard around the world and there will not be enough hiding places on the globe for these murderers to hide or enough money to pay for compensation. Of course, it will be too late for the babies, like this poor child, to be saved. But we will be able to take satisfaction from the fact that never again will anyone have to be pushed to poison their child because for once and for all, it will be known as poison and we will all wonder how it was we fell for the vaccine lie for as long as we did.”
    Meryl Dorey, President, Australian Vaccination Network, AVN Yahoo group, 17 Dec 2008, message #36449

    Yes. Dorey is not anti-vaccine. Just ask her: she’ll tell you.

  49. #49 Chris
    January 19, 2011

    Anon:

    What about the peanut allergies and a possible connection to the ground nut (peanut) as adjuvant in some vaccines?

    Citation needed (and remember it has to be real, either scientific paper or an official public health agency website). Especially since that is not an approved adjuvant in the USA:

    Aluminum gels or aluminum salts are the only vaccine adjuvants currently licensed for use in the United States. Small amounts of aluminum are added as an adjuvant to help stimulate better responses to vaccines. Aluminum is one of the most common metals found in nature and is present in air, food, and water.

  50. #50 Nicole
    January 19, 2011

    @ Anon

    Chris, “food allergies and intolerances are not caused by vaccines.” What about the peanut allergies and a possible connection to the ground nut (peanut) as adjuvant in some vaccines?>>>>>>

    I am very curious. Id love to see any research you have to this. I can’t imagine how giving a vaccine containing peanut butter would Cause a peanut allergy anymore than giving your child a peanut butter sandwich.

    @ Chris

    I’m reading the links you sent and still trying to find my information.Id however you have a link for more info on Tdap vaccine esp related to seizures handy I would appreciate it.

  51. #51 Anon
    January 19, 2011

    @Chris, can you prove that there is no adjuvant that uses ground nuts in the U.S.? Arachis hypogaea (ground nut) is another name for peanut.

    http://www.freepatentsonline.com/EP0640348.html

    http://query.nytimes.com/gst/fullpage.html?sec=health&res+9a00e2d8153ff9

    http://www.gphis.usda.gov/animal_health/vet_biologics/publications/memo_

  52. #52 Anon
    January 19, 2011

    Nicole, “I can’t imagine how a vaccine could cause a peanut allergy?” Maybe as an unintended antigen? Heather Fraser wrote an interesting book on the theory. History of the Peanut Allergy Epidemic. Among some of her points is the fact that vaccine ingredients are not subject to laws requiring full disclosure of ingredients (trade secrets). Culture mediums same thing.
    In Israel it’s not so much peanut allergies as sesame allergies (there of course, sesame oils are more commonly used as adjuvants).
    In the few vaccines offered in the 1800’s the culture medium was milk. 1901- first case of milk allergy. Anyways, I believe the onus would be on the industry to prove that peanut oil is not/has not ever been used as an adjuvant.

  53. #53 Matthew Cline
    January 19, 2011

    @Anon:

    @Chris, can you prove that there is no adjuvant that uses ground nuts in the U.S.?

    Anyways, I believe the onus would be on the industry to prove that peanut oil is not/has not ever been used as an adjuvant.

    How is Chris and/or the pharmaceutical industry supposed to prove a negative?

    1901- first case of milk allergy.

    Are you saying that’s merely the first recorded/diagnosed case of milk allergy, or that it’s the first case of milk allergy ever? If the later, are you using the logic that if there had been people with milk allergy before 1901, then there’d be a pre-1901 record of it happening?

  54. #54 Anon
    January 19, 2011

    Matthew, Chris said peanut oil is” not an approved adjuvant in the U.S.A.” I am just asking for her /him to demonstrate that.

  55. #55 Militant Agnostic
    January 19, 2011

    And I believe the onus would be on the industry to prove that wombat testicles are not/have not ever been used as an adjuvant.

  56. #56 DrMead
    January 19, 2011

    Guess that means the onus is on me to prove I am not the current avatar of the goddess Morrigu. What a bother. :)

  57. #57 Chris
    January 19, 2011

    Anon, the blue text in my reply is something called an “URL link.” If you click on it, you will go to the web page that has the paragraph I posted in the blockquote (that is the text that is indented and has a line down the left hand side).

    You made a claim that there was peanut oil used as an adjuvant, it is up to you to provide the evidence for that claim. I did do a PubMed search, found some very old papers and veterinary studies. I hope you can do better.

    Oh, I did do a Google on “peanut oil adjuvant.” The first hit was CureZone and the second was whale.to, then there was a whole other list of dubious sources of information like sMothering. I guess you know what I think of those.

    Nicole, I will leave it up to you to learn how to use PubMed. I would also suggest you read Dr. Paul Offit’s latest book Deadly Choices which explains the story on the seizures and pertussis component of the vaccine. The fact that the “p” in Tdap is a little letter means that there is a smaller amount in it, something you would know if you read the CDC Pink Book (which I gave you a link to) chapter on pertussis. I am sorry, I have done enough homework for you today.

  58. #58 Chris
    January 19, 2011

    Also, Anon, when you cut and pasted those links from whatever web page are repeating they came back incomplete, so they are broken. You need to actually go to the page, and then cut and paste from full address in your browser.

    If you are having trouble learning how to use the Internet browsers, I suggest you sign up for a basic class at your local library.

  59. #59 Mephistopheles O'Brien
    January 19, 2011

    @anon,

    Matthew, Chris said peanut oil is” not an approved adjuvant in the U.S.A.” I am just asking for her /him to demonstrate that.

    In the same post where she said the original quote, she included a link to a CDC questions page that states “Aluminum gels or aluminum salts are the only vaccine adjuvants currently licensed for use in the United States.”
    Nuts are neither aluminum gels nor aluminum salts. Therefore ground nuts are not an approved adjuvant in the USA. Q.E.D.
    http://www.cdc.gov/vaccinesafety/concerns/adjuvants.html

  60. #60 Matthew Cline
    January 19, 2011

    @Chris:

    From your link:

    Aluminum gels or aluminum salts are the only vaccine adjuvants currently licensed for use in the United States.

    To play devil’s advocate, it does say “currently licensed”, which doesn’t rule out peanut oil having been licensed in the past. Perhaps Anon wishes you to link to every single document on adjuvant licensure that the FDA has ever produced.

  61. #61 Chris
    January 19, 2011

    Matther Cline, if they were approved for something other veterinary practice, it would have been over thirty years ago. I have a feeling one of Anon’s broken links was about vaccines for animals since it had “animal_health/vet_biologics” in the URL. I didn’t know he/she was worried about peanut allergies in sheep and horses.

  62. #62 Science Mom
    January 19, 2011

    Anyway I am trying to find answers to some specific vaccine questions that when I look at the cdc site it says talk to your dr. Dr. dosent even hear my concerns just heard that I have concerns and treats me like the over paranoid mother of an autistic child . I google for information and all I seem to get is a ton of pages saying there either is or is not an autism link and I don’t even care about that!!

    Hi Nicole, I’m a bit late to this part of the conversation but if you have specific questions (and sorry if you asked them earlier), I would be happy to try and answer and provide citations and/or links to valid sources.

  63. #63 Anon
    January 19, 2011

    Peanut oil is in most vaccine patents. Why?

    Ingredients generally regarded as safe (GRAS) do not apparently have to appear as ingredients in pharmaceuticals.

    Although peanut oil is not as you say a “licensed” adjuvant it can be used in the vaccine culture, fermentation or buffer mediums.

    Peanut oil would not have to be listed if it is considered an “inactive” ingredient.

    http://www.patent storm.us/patents/6720001/claims.html

  64. #64 Science Mom
    January 19, 2011

    Anon, there are no peanut-derived adjuvants in vaccines either in the U.S. or EU. It is not in any cultures or buffers either and all excipients do have to be listed.
    http://www.cdc.gov/vaccines/pubs/pinkbook/downloads/appendices/b/excipient-table-2.pdf

  65. #65 Chris
    January 19, 2011

    Anon, that doesn’t even make sense, and again you posted a broken link. And please, please figure out how to cut and paste a URL link.

    Here is a wee bit of advice. Look under the box you type your comment in. See the little button marked “Preview.” After you post a comment with a link, click on the “Preview.”

    When the preview is displace, hover your mouse over the link. Then click on the right hand button. Choose “open in new window.” That way you can see if your link is broken.

  66. #66 Mephistopheles O'Brien
    January 19, 2011

    @anon,

    Do you have evidence of a vaccine that contains peanut oil or ground nuts of any sort?

  67. #67 Chris
    January 19, 2011

    So I was finally able to get the actual URL:
    http://www.patentstorm.us/patents/6720001/claims.html

    Which looks a bit dodgy, but it gives this information:
    Emulsion compositions for polyfunctional active ingredients

    Inventors

    * Chen, Feng-Jing
    * Patel, Mahesh V.

    Application
    No. 09420159 filed on 10/18/1999

    Okay, so we have a title, inventors and application number. So now it is time to search the actual US Patent Office at http://patft.uspto.gov/netahtml/PTO/search-adv.htm

    So I put apn/09420159 into the search box. The result is:
    Results of Search in US Patents Text Collection db for:
    APN/09420159: 0 patents.

    Okay, let me try again. I’ll try the title. So I input ttl/(Emulsion and compositions and for and polyfunctional and active and ingredients)… it is a boolean expression. Okay the results are:
    Results of Search in US Patents Text Collection db for:
    TTL/(((((Emulsion AND compositions) AND for) AND polyfunctional) AND active) AND ingredients): 0 patents.

    Okay, time to try inventor name. I am going to put in in/Patel-Mahesh. Success! Here is the list:
    PAT. NO. Title
    1 6,770,819 Full-Text Communications cables with oppositely twinned and bunched insulated conductors
    2 6,731,629 Full-Text System and method for switching media packets for packet-based communication in a mobile communications network
    3 6,594,253 Full-Text System and method for mobility management for an internet telephone call to a mobile terminal
    4 6,400,950 Full-Text System and method for de-registration of multiple H.323 end points from a H.323 gatekeeper
    5 6,314,284 Full-Text System and method for providing service transparency for mobile terminating calls within an H.323 system
    6 6,289,223 Full-Text System and method for selective multipoint transmission of short message service messages
    7 6,081,731 Full-Text Selective carrier denial for mobile subscribers
    8 6,049,714 Full-Text Implementing number portability using a flexible numbering register and an interwork link register
    9 6,047,056 Full-Text Method to suppress number portability database queries for calls routed on non-ported numbers
    10 5,884,179 Full-Text Optimized routing of terminating calls within a mobile telecommunications network
    11 5,878,347 Full-Text Routing a data signal to a mobile station within a telecommunications network
    12 5,878,115 Full-Text Method and apparatus for providing different terminating call treatments based on service area
    13 5,835,856 Full-Text Transporting user defined billing data within a mobile telecommunications network
    14 5,624,914 Full-Text Lipophilic oligosaccharide antibiotic salt compositions
    15 5,338,758 Full-Text Bicyclic diterpene PAF antagonist compounds
    16 5,143,832 Full-Text ATCC 53620 production of a triacetylenic dioxolone with Microbispora sp. SCC 1438

    Okay, let me try the other inventor and see if there is a common patent. I am going to put in in/Chen-Feng-Jing (I don’t know if it likes hyphenated names). Yay! It worked. Here are the results:
    1 7,374,779 Full-Text Pharmaceutical formulations and systems for improved absorption and multistage release of active agents
    2 6,982,281 Full-Text Pharmaceutical compositions and dosage forms for administration of hydrophobic drugs
    3 6,923,988 Full-Text Solid carriers for improved delivery of active ingredients in pharmaceutical compositions
    4 6,761,903 Full-Text Clear oil-containing pharmaceutical compositions containing a therapeutic agent
    5 6,720,001 Full-Text Emulsion compositions for polyfunctional active ingredients
    6 6,569,463 Full-Text Solid carriers for improved delivery of hydrophobic active ingredients in pharmaceutical compositions
    7 6,468,559 Full-Text Enteric coated formulation of bishosphonic acid compounds and associated therapeutic methods
    8 6,458,383 Full-Text Pharmaceutical dosage form for oral administration of hydrophilic drugs, particularly low molecular weight heparin
    9 6,451,339 Full-Text Compositions and methods for improved delivery of hydrophobic agents
    10 6,383,471 Full-Text Compositions and methods for improved delivery of ionizable hydrophobic therapeutic agents
    11 6,309,663 Full-Text Triglyceride-free compositions and methods for enhanced absorption of hydrophilic therapeutic agents
    12 6,294,192 Full-Text Triglyceride-free compositions and methods for improved delivery of hydrophobic therapeutic agents
    13 6,267,985 Full-Text Clear oil-containing pharmaceutical compositions
    14 6,248,363 Full-Text Solid carriers for improved delivery of active ingredients in pharmaceutical compositions

  68. #68 Chris
    January 19, 2011

    With a bit of work, I found the actual patent (which is in a comment for moderation, and I don’t care if it stays there!). It is number 6,720,001 approved in 2004. Here is the full official patent.

    It is described as:

    The present invention relates to pharmaceutical delivery systems, and in particular to oil-in-water pharmaceutical emulsions for the improved delivery of polyfunctional active ingredients, such as pharmaceuticals, cosmeceuticals, nutritive agents, and diagnostic agents.

    Basically a way to mix oil and water. Peanut oil being just one kind of oil it works for out of a long list of oils.

    This patent does not mean that peanut oil is in any vaccine.

  69. #69 Nicole
    January 19, 2011

    @ Sandy

    However, please note that IgE testing cannot diagnose celiac disease, because celiac disease is not actually an allergy. I wouldn’t expect the allergy to cause a deficiency; it shouldn’t affect absorption like celiac disease does. This is where I start to get concerned about your DAN! doctor — these two conditions should not be confused, because the treatment is different. I also have some concerns about IgE testing, because it’s not as reliable as challenge testing. (Challenge testing isn’t fun, though; I’ve been through it twice.)>>>

    We only recently took him to the Dan! dr. His allergy test was done a year and a half or so ago by a gastroenterologist. She also scoped him and found inflamation but the biopsies she took did not come back positive for celiac. Before this he had several Dr and er visits and 2 week long hospital stays in the psychology unit because he was hitting him self and banging his head so badly that he was leaving bruises all over him and sometimes me. We had already tried rispedol, clonidine, adderal, and imiperamine.

    I had read a lot about some autistic kids having good luck with a gfcf diet and she reffered me to a nutritionist to help me make sure that he was getting a well balanced diet. I do still worry a bit about defencies especially calcium because he still has a very limited number of foods he will eat.

    I also can’t draw a conclusion from your statement that it helped with the violent behaviors and decreased the pica; even normal children can go through periods of pica that resolve on their own. And autistic children are watched more closely so we notice the phases more acutely than we might otherwise; that may make us notice associations.>>>>

    True the Pica may have improved on its own. As as as the gfcf diet..

    I originally asked his teachers to keep a chart for me because I wanted some sort of “evidence” to take to Dr’s. . In my experience Dr’s listen better when a description of a child’s behavior comes from someone other than the parents, such as teachers at school.
    This chart has 12 different behaviors across the top and 30 minute time sections down the side. Each time a behavior happens ( or example hitting himself) . It also helped us see if behaviors were consistently happening at a certain time of day . Maybe right before lunch possibly indicating that he was just really hungry and impatient to go eat, or another time that he was trying to get out of another task he didn’t want to do.

    With the diet in place the negative behaviors happening less frequently. Far fewer marks on his chart daily.

    For all kids, though I think more so for a child with a very limited command of pecs and limited amount of signs, behavior is communication. When he spends a lot less time banging his head, screaming, hitting himselff,hitting others and biting himsef I strongly feel he is communicating “Hey I feel better”

  70. #70 Matthew Cline
    January 19, 2011

    @Anon:

    Although peanut oil is not as you say a “licensed” adjuvant it can be used in the vaccine culture, fermentation or buffer mediums.

    Okay, so peanut materials are used in the manufacturing process of vaccines. Now, are enough of the peanut allergens found in the end product to trigger an allergic reaction? If so, that will be listed on the vaccine insert, and it will be possible to find a vaccine insert which warns about peanut allergies. As an example of this, flu vaccines don’t contain egg products as an active ingredient, but are manufactured with eggs, and can cause allergic reactions, so this is mentioned in the inserts. On the other hand, if the amount of peanut allergens in vaccines is so low that it can’t trigger an allergic reaction, then how can it be in large enough amounts to cause the peanut allergy in the first place?

  71. #71 sandy
    January 20, 2011

    @nicole

    I’m not certain if you intended your comment at 68 to be directed to me or not, but I will respond with a few thoughts, even though they are off topic to vaccines. Please forgive me.

    1. I think it is possible that your son has one or more food issues. Addressing the food issue can lead to other improvements. This is scientifically plausible and reasonable. Your chart is a good way to start to get a handle on whether or not there is a real effect. Once you believe he is at steady state, you might want to try trials of one food at a time to see if a less restrictive diet is adequate.

    2. The chart that your school uses to report behaviors is very similar to a chart my son’s school uses as a behavior reinforcement chart. The difference is all of our behaviors are worded as positive, since it is a reinforcement chart. We have found that just seeing stickers accrue for positive behavior has a motivating effect for him. Earning a prize is a bonus. My point is simply that your son may be getting positive reinforcement for “good” behavior (no hitting, for example) as the adults record good days. This is actually a good thing.

    3. Please be very skeptical of the DAN Dr. You’ve clearly had difficulty with the psych doctors, and I imagine that the DAN Dr. is likely very sympathetic and really seems to listen. I know many of them start with diet, and if diet is helping your son it will be very tempting to see what else he might have to say. However, many of the DAN suggestions range from no scientific evidence that I know of (fungal overload) to completely bogus (provoked metal testing, to name an egregious example).

    4. It is clear to me, at least, that you are trying hard to help your son. Good luck.

  72. #72 sandy
    January 20, 2011

    @nicole

    I nearly forgot; I wanted to echo Calli Arcale’s comment that pica can be sensory seeking behavior and chewing gum can be very helpful.

  73. #73 Luna_the_cat
    January 20, 2011

    If I could offer a little insight into the “peanut” thing — a purified peanut oil was used in an experimental water-in-oil adjuvant tested in the 60s; was in several trials between 1963-1973, and was abandoned in the early 70s along with several other emulsions because of side effects including granulomas at the injection site or causing nausea and vomiting. There are a few adjuvant review papers in Scopus and PubMed which go over the history of adjuvants which mention it.

    Peanut oil has not been in use in vaccines since that point, according to the best evidence I can find.

  74. #74 Science Mom
    January 20, 2011

    Okay, so peanut materials are used in the manufacturing process of vaccines. Now, are enough of the peanut allergens found in the end product to trigger an allergic reaction?

    @ Matthew, peanut products are not in any phase of vaccine manufacture. Anon is rectally-sourcing that. I’ve encountered this assertion before and it’s all based upon that patent and an experimental adjuvant decades ago.

  75. #75 Nicole
    January 20, 2011

    @Science mom:

    Hi Nicole, I’m a bit late to this part of the conversation but if you have specific questions (and sorry if you asked them earlier), I would be happy to try and answer and provide citations and/or links to valid sources.>>>

    Thanks, and no I never did. I got caught up in trying to defend and clarify other stuff. Pointless really I guess but hard not be be emotionally envolved when its about my kid :)

    Ok I have a child who is undervaccinated (3 doses)against pertusis, diptheria, and tetanus.

    She is 7 and DTap is not licensed for her. She has had a seizure and stopped breathing. Only one, never again (I hope). She also has asthma which makes me think she would be more at risk for complications if she got pertusis.

    Now the Tdap is licensed for children 10 or 11 and up.

    In the middle school there is a suspected case of pertusis.

    So Im trying to determine the best action for this child right now.
    Testing to see if she still has immunity?
    Giving a vaccination?
    Removing her from school to protect her and others?

    The other question is what is the risk to waiting on the guarasil vaccine? How would my child not getting the vaccine at 11 put others at risk? If she is doing something that would spread the HPV virus at 11 I have gone seriously wrong as a parent.

  76. #76 Calli Arcale
    January 20, 2011

    Nicole @ 68:

    @ Sandy

    Actually, you were quoting me. ;-) (Don’t feel bad — it’s easy to get mixed up as to who says what when a thread scrolls as fast as this one.)

    We only recently took him to the Dan! dr. His allergy test was done a year and a half or so ago by a gastroenterologist. She also scoped him and found inflamation but the biopsies she took did not come back positive for celiac. Before this he had several Dr and er visits and 2 week long hospital stays in the psychology unit because he was hitting him self and banging his head so badly that he was leaving bruises all over him and sometimes me. We had already tried rispedol, clonidine, adderal, and imiperamine.

    I’m very glad to hear you’ve been able to rule out celiac. My cousin has that (a severe case), and I remember how sick she was before they diagnosed her. She’d initially been misdiagnosed as having meningitis; it can be a very tricky one to diagnose, especially since the high fever she got is not a typical symptom (though it can be a symptom of particularly severe celiac disease). She’s got a strong immune system, evidently. ;-)

    I think wheat allergy is probably a better problem to have, if you have to have one. For the calcium deficiency, would he eat Tums? That can be used as a supplement (though calcium carbonate is not the ideal dietary form; it’s better absorbed in milk). My daughter drinks plenty of milk, but she has acid reflux disease so we do give her Tums occasionally and she likes them. Have you tried other kinds of milk? I know someone who is allergic to bovine casein (one of the major culprits in milk allergies) but who can drink goat’s milk without difficulty. Goat’s milk is quite a bit stronger tasting, which might be a problem.

    I originally asked his teachers to keep a chart for me because I wanted some sort of “evidence” to take to Dr’s. . In my experience Dr’s listen better when a description of a child’s behavior comes from someone other than the parents, such as teachers at school.

    That’s a good thing to do, and not just for proving some sort of point. (Be wary of evidence which proves a point; you want to test a theory, not prove it right. If you’re out to collect confirmation, you’ll pretty much always be successful even if you’re not right. One of the devils of science, really — they call it confirmation bias, and it’s extremely hard to avoid.) The school environment is a controlled environment, which makes it very useful for this sort of chronicling — everything’s on a routine, so for a child more sensitive to changes, it takes out a lot of the “confounders” — is the kid acting out because of wheat or because he’s off his routine? I know my daughter acts out when she’s off her routine. School is usually very predictable, so that problem doesn’t happen so much. It also helps that there are trained observers there. They notice things that I wouldn’t.

    And I can certainly believe that treating gut symptoms will make life easier for an autistic child, and that in turn will improve their behavior and their learning. I can’t say for sure that treating my daughter’s acid reflux disease helped her behavioral issues, because it’s possible she just matured in that time period, but she’s sleeping a hell of a lot better, and that has to be beneficial.

    For all kids, though I think more so for a child with a very limited command of pecs and limited amount of signs, behavior is communication. When he spends a lot less time banging his head, screaming, hitting himselff,hitting others and biting himsef I strongly feel he is communicating “Hey I feel better”

    Absolutely. People act out, in various ways, when they hurt. They get cranky. It’s perfectly normal, but if you can’t verbalize it usefully, you’ll act out in ways that don’t make sense to other people. And you won’t be able to explain why. That’s true whether the inability to verbalize is due to autism or cultural conditionining. (I know people with that problem — perfectly able to communicate, very intelligent, no social defects, but raised not to ask for help or admit to ever being in pain or hurt or offended or anything. Result: a passive-aggressive powderkeg. At least autistic kids have an excuse.)

    I ramble, but basically I agree. ;-)

    About your child and pertussis — I’m not a medical professional, but as a parent of a child receiving services and as an asthmatic, I can tell you what I’d do.

    First, I’d avoid withdrawing her from school until there is a clear indication (like maybe pertussis in her actual school). Education hours are so valuable at this age, and if she doesn’t have pertussis, she’s not .

    Second, you can get her titers checked; they draw blood and check to see if she has adequate antibodies to pertussis.

    Third, I would recommend vaccinating, especially if her antibody count is low.

  77. #77 sandy
    January 20, 2011

    @Calli Arcale

    You can count us in as further anecdotal evidence in support of goat’s milk vs cow’s milk. My cousins who got sick on cow’s milk grew up on goat’s milk, and during the time when my son did not appear to tolerate any significant quantity of cow’s milk, he could drink at least a cup of goat’s milk. It’s wicked expensive, so we tended to ration it. I was told that goat’s milk protein is similar to human milk protein. I have no idea of that’s true. If it is, then there would at least be a reasonable explanation beyond random anecdotes.

  78. #78 Luna_the_cat
    January 20, 2011

    @sandy — I believe it’s down to the sugars in the milk. Goat’s milk has less lactose in it than cow’s milk. As an interesting contrast, mare’s milk has considerably more, which is why even in the cultures where drinking mare’s milk is common (think Mongolia), it gives just about everyone stomach troubles.

  79. #79 Calli Arcale
    January 20, 2011

    Interesting! Y’know, I understand in Mongolia, they often drink *fermented* mare’s milk. I wonder if that’s to make it more digestible?

  80. #80 sandy
    January 20, 2011

    @ nicole

    I hope you stick around. I mostly lurk and read. I’ve found this site and http://photoninthedarkness.com/ both to be very helpful in analyzing the science behind vaccines and autism fads and treatments. It’s easy as a parent to feel guilty that one isn’t doing enough, especially if well-meaning friends or relatives point a person at dubious treatments and testimonials.

    Thanks everyone.

  81. #81 Luna_the_cat
    January 20, 2011

    @Calli —

    Maybe, although I suspect the dearth of anything else from which to make alcohol, traditionally, may have more to do with it. :) In terms of making it more palatable OR more easily digestible — from experience, it doesn’t. (I was in Mongolia in 1998, and yes, I tried it, and yes, the fermented mare’s milk still gives even the locals stomach troubles.)

  82. #82 Calli Arcale
    January 20, 2011

    Well, there goes that idea. ;-) Of course, a lot of traditional food items really can’t be justified with any sort of health explanation; at some point one must accept that there is no accounting for taste. It still boggles my mind that people in parts of Italy will eat cheese so rotten it has actual, live, wriggling worms in it.

    Ew.

  83. #83 Luna_the_cat
    January 20, 2011

    My assumption with a lot of these foods is that they were the available option in times of starvation and desperation, and they became tradition on the basis that they didn’t necessarily kill people.

    There is nothing else which could possibly explain lutefisk, either.

  84. #84 Chris
    January 20, 2011

    Callie Arcale:

    Interesting! Y’know, I understand in Mongolia, they often drink *fermented* mare’s milk. I wonder if that’s to make it more digestible?

    It should if there is bacteria that digests the lactose, like those in yogurt. But sometimes you can’t choose what yeast and/or bacteria you’ll get during fermentation.

    I have been reading up on this, and the domestication of cattle, goats and sheep actually did not drink the milk. It was often made into other things like butter and cheese, or fermented. It made it last longer and it was a bit more digestible. The mutation for lactase persistence is mostly in Northern Europe and some (or one?) part of Africa. Yet there are dairy products in India (guee), the Middle East (cheese and yogurt) and even as noted, Mongolia (a quick wiki check shows they also make cheese and yogurt, not just fermented milk).

    Though it is not perfect. My very lactose intolerant sister can have a little bit of cheese (Parmesan on pasta), but much more she gets an upset stomach. My not so lactose intolerant daughter can eat cheese and yogurt, but needs to take lactase tablets to drink milk.

    (I printed out The Origins of Lactase Persistence in Europe, now where did I put it?)

  85. #85 Vicki
    January 20, 2011

    The thing about giving Gardasil at 11 is to be sure that it’s before it’s needed. That way you don’t get into worrying about “if they want my daughter to have this at 14, does that mean she’s sexually active?” or a patient asking for it at 15 and her parents getting upset.

    The other thing is that a girl needing that vaccine that young may not mean her mother (or father) has failed as a parent: there is the slim possibility that, instead, a teacher or relative will grossly overstep. In that case, it would not be you who has failed: it is the teacher, relative, or other adult who has failed the child.

  86. #86 Chris
    January 20, 2011

    Luna_the_Cat:

    There is nothing else which could possibly explain lutefisk, either.

    I like lutefisk. It really does not have much taste, and is kind of like jelled fish.

    When I was in high school my parents hosted a bunch of sailors from a Swedish Navy ship around Christmas time. They sat around our back porch with us and talked about some of the traditional foods (they were actually unfamiliar with fatigman, sandbakkels, and rosettes … cookies we had made as part of our Norwegian-American heritage). Lutefisk did come up, and one of them announced that there was something even worse: Rottinfisk (spelling may be off, but you get the point). Then one of them piped up “But I like Rottinfisk!”

  87. #87 Gizmo
    January 20, 2011

    @Nicole:
    “After 3 months his violent behavior improved greatly. This was after a year of trying different medications such as risperdol and seeing little improvement.”

    A couple of thoughts on this comment. Paul Offit in his first book points to a couple major problems in trying to tie improvements in behavior with certain treatments.

    1) Offit points out that for a majority of children ASD isn’t a condition of developmental stasis, but developmental delay. Most ASD children will develop on their own (sometimes in “spurts”), only slower than a neurotypical child. So individually, it’s almost impossible to say if the improvements in behavior are due to the new diet or natural development. Offit points out that natural development is the likely source of the “miracle” children that certain questionable practitioners feature on their web sites in a “before and after” video in an effort to drum up business.

    2) Self reporting bias – It’s no secret that people that want to see an improvement in a child often do. Offit uses the example of the first “miracle” treatment for Autism: secretin. When standardized trials were first conducted of secretin injections, the parent data clearly showed significant improvements in their child’s development and behavior… unfortunately the saline solution placebo showed an even larger improvement. I know that you’re using charts and graphs and trying to categorize and quantify different behaviors, which is better than generic appraisals, but it can still be hard to block out “wishful thinking”.

  88. #88 Luna_the_cat
    January 20, 2011

    @Chris — I like lutefisk. It really does not have much taste, and is kind of like jelled fish.

    ::stares at you in horror::: Yeeeeess. I can only assume you don’t have many taste buds. o_O

    I dread to think of rottefisk.

    But, I do think the maggoty cheese trumps both those, though.

  89. #89 Science Mom
    January 20, 2011

    Ok I have a child who is undervaccinated (3 doses)against pertusis, diptheria, and tetanus.

    She is 7 and DTap is not licensed for her. She has had a seizure and stopped breathing. Only one, never again (I hope). She also has asthma which makes me think she would be more at risk for complications if she got pertusis.

    Now the Tdap is licensed for children 10 or 11 and up.

    In the middle school there is a suspected case of pertusis.

    So Im trying to determine the best action for this child right now.
    Testing to see if she still has immunity?
    Giving a vaccination?
    Removing her from school to protect her and others?

    First, since you didn’t provide much information about the seizure, speak to your physician about his/her opinion if that was a isolated incident and considered resolved. If so, there are a couple of things you can do. You can proceed with finishing the DTaP series or you can do a booster of Tdap. This has reduced pertussis and diphtheria antigen and has been licensed in Canada for children under 7 years old so there is safety and efficacy data. Also, it was recommended for children under 7 years old in California this past year due to the pertussis outbreak there. So technically, off-label use but safe. But speak to your physician about these options. There is no established correlate of immunity for pertussis so pulling a titre is of very limited value.

    The other question is what is the risk to waiting on the guarasil vaccine? How would my child not getting the vaccine at 11 put others at risk? If she is doing something that would spread the HPV virus at 11 I have gone seriously wrong as a parent.

    Ha, I know what you mean. The reason Gardasil is recommended when you would hope that they aren’t sexually active, is precisely for that reason. It is a (hopefully) conservative estimate to catch children before they become sexually active and contract a HPV strain.

  90. #90 dedicated lurker
    January 20, 2011

    I’ve heard that goat’s milk has been given to children who were unable to breast-feed before formula was invented, so there may be some truth to the “similiar to human milk” statement, although I’m not sure how close they are nutritionally.

  91. #91 Calli Arcale
    January 20, 2011

    Chris:

    they were actually unfamiliar with fatigman, sandbakkels, and rosettes … cookies we had made as part of our Norwegian-American heritage)

    By total coincidence, my dessert for lunch today consisted of one fatigman, one sandbakkel, and one rossette!

    *gobsmacked*

    I don’t like lutefisk, though it’s not that bad with cream sauce. (The origin of lutefisk, by the way, is fairly straightforward; it’s a way of making dried cod edible again.) But rommegrot — now that stuff is awesome. Hubby thinks it tastes like glue, but I disagree. It tastes like completely and utterly thumbing my nose at any semblance of a weight-loss diet. :-D

  92. #92 Chris
    January 20, 2011

    Uff-da!

  93. #93 Chemmomo
    January 22, 2011

    sandy and everyone else concerned about food intolerances with apologies for reviving a dead thread; I had no time to comment when this first came up but I am still compelled to put in my two cents:

    sandy, I’m not trying to belittle you or anything like that, but I think you’re confusing the issues a little here. If I describe my experience with my own older child, the story is very similar to sandy’s: an infant intolerant to the dairy I ate while nursing, and unable to digest milk when it was introduced after 1 year. We too removed all dairy products from the diet and reintroduced them two years later. Now I have child (in elementary school) who can eat cheese, yogurt, and ice cream, but has to limit milk intake (both total amount and speed consumed). One of my nephews and a friend of the family went through the same thing (conversations with their parents helped us troubleshoot our child’s dairy issues).

    The thing is none of these children have any kind of diagnosis whatsoever.

    From my perspective, a problem with digesting dairy has absolutely nothing to do with autism or developmental delays.

    Are GI disturbances and specifically dairy issues associated with autism? It’s hard to say. You can find tons of studies looking at this, but not that many of them are really meaningful. I even can find a recent study in Pediatrics that found that autistic children were five times more likely to have GI issues (not specifically dairy) than their undiagnosed siblings. But so what? My child with “normal” development and difficulty digesting dairy also has an undiagnosed sibling who can drink milk by the gallon no problem. As does my nephew mentioned above. What’s missing is a study comparing the prevalence of specific GI issues, issue by issue, with the general, non-autistic population.

    This is what I’m hearing from sandy and others: you’re seeing your autistic (or otherwise developmentally delayed) child’s behavior change when you address your child’s GI issues. You’re assuming that those two things are related because you discovered the GI issues through your child’s behavior rather than the words I heard after my child guzzled milk: “my tummy hurts.”

  94. #94 sandy
    January 23, 2011

    @ chemmomo

    I fear that you have misunderstood me, and I think that my opinion is not so far away from yours. Perhaps I was unclear. My point was that my child did NOT have any sort of diagnosis at the time we determined he had issues with dairy (hey, he was only a few weeks old). We didn’t get a development diagnosis until many years later. We didn’t withdraw milk due to autism – we withdrew it because of other symptoms.

    I was trying to stress that you can have food intolerance at the same time as developmental issues. If you treat the food intolerance, you may see improvement in behavior or developmental progress. When my son was older and allowed only very limited quantities of milk, yet still pre-diagnosis, we did tend to see behavior issues escalate when he had been given too much dairy.

    That doesn’t mean there is some sort of magic link between autism and milk / wheat. Rather it means if you have a child with an intolerance, and you treat that intolerance, then you may see improvement in other areas as well. The fact that so many people conflate the two and believe that gluten free / casein free is some sort of super autism treatment is actually very frustrating to me.

    I did have a second concern, which may also have gotten lost. When a parent reports that a child appears to improve with a diet change, it may be confirmation bias or it may be real. Unlike many other autism “treatments” which have been proven to be ineffective in all populations, there is some evidence that in those (relatively few) children who have both autism and food issues, treating the food issue may provide results. My own opinion is that it behooves us to listen to those parents, help them to figure out if the effect is real or not, and not automatically dismiss them. If the only people that take the parents seriously are the DAN Drs., then how we can blame those same parents for trying other DAN treatments? Instead, I’d like to see those parents engaged in a discussion to understand why the diet might have worked and learn more about the science (or lack thereof) for other potential treatments.

  95. #95 Chemmomo
    January 23, 2011

    Sandy, in your own words from Post 36:

    So why do I tell this long story? During the pre-K time frame, he received a PDD-NOS diagnosis.

    To me, that language suggests you believe there’s a link.

    Please forgive me if that’s not what you meant.

    My point is that I don’t see any clear evidence that those two things (dairy intolerance and autism) are linked. My own experience (with a very limited sample size: n = 4, the 3 already mentioned, plus the one kid among my older child’s peers with a diagnosis who drank tons of milk no problem) suggests they’re not. That’s why I told my story, because it paralleled yours minus the diagnosis.

    Like you, it disturbs me that the two issues get conflated. And it disturbs me even more that there’s an entire industry (DAN!) devoted to conflating them. Sometimes it seems to me that while the folks touting the GCFC diet complain that their concerns over diet are being dismissed, they dismiss the fact that those same food issues are not uncommon in the general population.

    I agree that digestive issues in children should not be dismissed just because the child can’t describe them (it’s difficult enough trying to figure out digestive issues with a verbal toddler who’s potty trained: it took us a while to figure out we had to cut back on milk consumption because we didn’t have the diaper evidence as during infancy). And I agree that more science is needed to clarify the issues—and when I say “more science” I mean both new studies, and more folks actually trying to understand what’s already out there.

    But I disagree when you say

    If the only people that take the parents seriously are the DAN Drs., then how we can blame those same parents for trying other DAN treatments?

    I don’t blame the parents; the blame goes to the DAN! advocates.

    Yes, you should treat the problem you have. The problem with those other DAN! treatments is you shouldn’t be treating problems you don’t have.

  96. #96 Chemmomo
    January 23, 2011

    Sorry: GCFC should read GFCF.

  97. #97 sandy
    January 23, 2011

    @Chemmomo

    Ah – Now I think now I understand why my story may have led to confusion. Since the milk intolerance and the diagnosis were separated in time, I was hoping to convey that they can co-exist, *not* that they are linked. A milk free diet can help a child, not because they are autistic, but because they can’t properly digest milk. I had no idea my son had autism, but he clearly had issues with milk, and I did observe an impact from the milk.

    Interestingly, after diagnosis there were a few folks who thought maybe I should remove gluten from his diet, because of all the chatter about GFCF, and, after all, he did have milk issues as a youngster. To them, the response to milk gave credence to GFCF. However, I could never see any reason to remove his favorite foods (pasta! bread!) since there was no physical sign of a gluten intolerance.

    It is such a fraught area, that it seems difficult to convey without misunderstanding, and for that I am truly sorry.

  98. #98 Chemmomo
    January 23, 2011

    sandy,
    the way you’re explaining things now I see that we are actually on the same page.
    And a funny thing: my older child who (still! ugh) has difficulty digesting dairy is also a pasta addict.
    Thanks for sticking with the conversation, and for staying on the side of reason.

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