So Much For Autism Awareness
April 21, 2008 by Kristina Chew, PhD
Filed under Health
In an op-ed entitled Foul Shots in yesterday’s New York Post, Robert Goldberg charts what could be called the rise and fall of the MMR vaccine. The MMR was developed by microbiologist Maurice Hilleman, “saved millions of lives around the world,” and—in one press conference in 1998—was said to be linked to digestive problems in children and to have caused them to become autistic, and so began what seems to be a steady erosion in public faith about vaccines. Wakefield’s claims have been discredited; he has been accused of medical ethics violations and faces being struck off the medical record. Goldberg, the vice president of The Center for Medicine in the Public Interest in New York City, wryly notes:
And so April, Autism Awareness Month, becomes not a noble search for a cure, but an annual war on the bookshelves, as scientists and activists – often with no medical proof – battle over lifesaving vaccines.
That’s a not too inaccurate description of what this Autism Awareness Month 2008 has felt like, though the “war” (to use Goldberg’s term) is happening not only on bookshelves (he discusses Paul Offit’s Vaccinated: One Man’s Quest to Defeat the World’s Deadliest Diseases, Neil Z. Miller’s Vaccines: Are They Really Safe and Effective, Arthur Allen’s Vaccine: The Controversial Story Of Medicine’s Greatest Lifesaver, and Jenny McCarthy’s Louder Than Words: A Mother’s Journey in Healing Autism). That Autism Awareness Month is in danger of becoming Vaccine Awareness Month is all too apparent on the internet and in the blogworld: Type “autism” into any internet search engine and the chances of reading a story mentioning vaccines are very, very likely “So much,” Goldberg writes, “for autism awareness.”
Indeed: Why do some talk about “greening our vaccines when what needs first and foremost to be done is to educate our autistic kids?
I think we need “Special Citizens awareness month”, or year, or how about every day where at least a healthy chunk of the public discourse is best practices in education, adult livelihood and public participation?
This month there is a bill in Congress proposing to set up a task force to determine best practices for autism education K-12, a bill proposing to change ERISA at the federal level so that one roadblock to insurance coverage nationally is removed, a bill proposing to fully fund IDEA, a bill proposing to require medical and dental schools to include specialized training in working with the physically and cognitively challenged, a crisis in Medicaid for the nation’s disabled citizens, and more, much more when the states’ and local issues are included, and what topic dominates the blogs, headlines, and a fair number of “advocacy organizations” in re: autism during this “awareness” month?
Vaccines, vaccines, vaccines, mitochondria, the Polings, and vaccines. (Yesterday our paper’s editorial section ran a story on autism awareness month, and the rotogravure was of a huge hypodermic.)
I hear you. The biomedical treatment/DAN believers have hijacked the month.
In a similar vein (no pun intended!) my father, Dr. Alan King, was one of the GYN Oncologists who pioneered the discovery of the various HPV strains that caused cervical cancer, leading to the vaccine that has and will save millions of lives in the world. But Gardisil has been hijacked by the anti-vacciners AND the Religious Right.
On the bright side, a book I consider the best in it’s class has been released this month. Dr. Michael Chez’s “Autism and it’s Medical Management: A Guide for Parents and Professionals” is hands down the best book I have read on the subject of medical management, debunking the biomedical treatment/DAN quackery, and is solidly based on the medical literature. I have a post on it in my blog. This is the book that should on everyone’s shelf.
Sometimes I get so weary of listening to all this biomedical treatment/DAN quackery. As a physician, I feel I have a duty, even though I am not practicing currently, to educate and try to “save” kids and families from this quackery, and they still experiment on the kids with no proof or even absolute proof that these treatments don’t work and can even harm kids. So now that I have no real friends in the local autism community, because everyone is into this quackery, I have turned to the internet to reach out and get to know some rational parents who are giving their kids the skills they need without quackery involved.
I just want to thank you, Kristina, for the great job you are doing here.
great op ed. Interesting that Jenny McCarthy’s son was a late smiler, not cracking his first smile until 5 months. 5 months! But she regarded him as neurotypical until 18 months??? Did she own the What to Expect Book? Boggles the mind. And this is the de facto autism spokesperson/advocate.
Mine was a late smiler too, and that’s why, in hindsight, I believe he was born this way. (Brad flashed his first smile at about 10 weeks, 2 weeks after the range for the norm (6 to 8 weeks), but it wasn’t so late that we couldn’t pin our hopes on simple maturational lag.)
Hello friends –
“As a physician, I feel I have a duty, even though I am not practicing currently, to educate and try to “save” kids and families from this quackery, and they still experiment on the kids with no proof or even absolute proof that these treatments don’t work and can even harm kids.”
The double think is amazing. I love it. From Storkdocs blog:
“We subsequently had Alex undergo a 24 hour EEG, which was slightly abnormal but not enough to impair his function and to treat. We found a knowledgeable neurologist who knows Dr. Chez, and after much discussion and research, based on the medical literature and studies that were and are ongoing, we placed Alex on memantine over 2 years ago, a medication used in treatment of Alzheimer’s, and is an antagonist to NMDA receptors and glutamate receptors in the brain. We have had incredible results, documented by physicians and speech therapists and occupational therapists, as well as the teachers and autism teacher at his school. ”
If you go to pubmed, you will find that there are zero double blind, placebo based studies on memantine and autism. Zero. There are two open label studies, one animal study, and three papers without abstracts availalbe; at least one of which looks to be a review. Of course, this doens’t count the studies that are currently ‘ongoing’. Progress is measured as documented by therapists. This is DAN level expirementation at its best; get a theory, evaluate open lable studies, try it out, and see what happens. If it works, it isn’t quackery.
I’m not saying don’t do it, by all means, go forward. We have experimented with similar drugs with our son. But to paint yourself as a bastion of knoweldge and medical ethics while you give your child drugs developed for Alzheimers that have not been studied in the long term in children, and have zero gold standard tests behind them is hypocritical in the extreme.
Many defeat autism now doctors are currently experimenting with drugs affecting the cholinergic system, just like you. You wide brush painting has left you the same color as the ones you have such contempt for.
- pD
What it comes down to is this: it’s ALL experimental, and our kids are the guinea pigs and this is because it is NOT ethically acceptable to test new drugs on kids; because ASDs are complex and poorly understood; and because it’s the American way to look for the magic bullet. Meantime, there aren’t enough certified teachers or therapists for the growing population of affected kids. Tom’s lucky because his parents are established middle-class professionals with health insurance and access to appropriate help and research when necessary. I shudder to think of other kids, with other parents, in other states who don’t have these things.
Storkdok, you gotta admit, pD has you there. We see a DAN and memantine is one of the few pharma drugs we’ve talked about, though we have not tried it yet. How old was your son when you started and how severe was he? Have you tried any acetylcholinesterases? There is one in particular that modulates the nicotinic receptors as well (galantamine), and there is research that shows abnormal binding for these receptors in autism.
We tried a very low dose, but it made our son vomit. That’s a 10% or so side effect listed for the drug. I think your comments about DAN docs might be true in some cases; I have met some freaky ones at conferences. But you need to understand (and admit) that honestly many of them don’t get any more controversial than you have with your own child. Saying all DAN docs are quacks is a but much. And I am an atypical parent, I do loads of reading on my own, and this helps guide the care for my son. I am not an idiot parent blindly trusting any doc.
As for vaccines, the point of this article, you guys should already know that there is a lot of evidence for altered immune system function in autism (post if you don’t and I would be thrilled to share). It is possible that vaccines could cause or exascerbate autistic behaviors, so it needs to be studied. “Everyone knows” that vaccines can be contraindicated for patients with dysfunctional immune systems. If you can’t admit that some children MAY be susceptible and that it needs to be studied, I find that unreasonable, and at odds with the Vaccine Safety Working Group agenda for study:
http://www.cdc.gov/vaccinesafety/00_pdf/draft_agenda_recommendations_080404.pdf
see pages 15-17 (cytokines) and note the cytokines mentioned here have been shown to be elevated in autism. Read the whole thing if you have time.
Reasonable people on both sides of this should be able to agree on a lot of things. It’s the steadfast zealots, on each side, that drive false stereotypes for the masses.
“This is DAN level expirementation at its best; get a theory, evaluate open lable studies, try it out, and see what happens. If it works, it isn’t quackery.
I’m not saying don’t do it, by all means, go forward. We have experimented with similar drugs with our son. But to paint yourself as a bastion of knoweldge and medical ethics while you give your child drugs developed for Alzheimers that have not been studied in the long term in children, and have zero gold standard tests behind them is hypocritical in the extreme.
Many defeat autism now doctors are currently experimenting with drugs affecting the cholinergic system, just like you. You wide brush painting has left you the same color as the ones you have such contempt for. ”
pD-
There is a huge difference between DAN doctors and mainstream doctors with training in neurology, psychiatry, developmental pediatrics, such as Dr. Chez and others who practice within the scope of their training, using ethical standards and guidelines. DAN doctors have not had residency or specialty training that includes and is specific in the treatment of autism and it’s medical management. There is no Board Specialty for DAN doctors, it doesn’t exist as a specialty. To compare a weekend course every couple of years by a physician who’s training can and is many times in a completely different specialty is ludicrous.
Off label use of medication by the physicians who are running the clinical trials is not comparable to chelation or HBOT or treatment of supposed candida infection by a DAN doctor who has no training in the care of ASD.
We consulted many of the physicians who have and are using memantine in children with autism. There are over 400 children with autism who have been treated and are currently being treated with memantine. The memantine is prescribed by a neurologist, within his scope of practice. We did not prescribe this for our son.
DAN doctors prescribe many treatments based on theories that have no evidence to support them. They prescribe on the basis of labs that have no normative values, that have not been studied in the NT population, so they have no credible data to treat from. Many publish “studies” in journals such as Medical Hypothesis, which is not peer reviewed and is not credible. In the court system, a certain OB/GYN has given “expert testimony” in autism cases that the trial judges have subsequently judged him to not be an expert witness, with no credible background in autism.
Please do not insult the physicians who have worked so hard to help our children by comparing them with DAN doctors. I would never, as an OB/GYN, presume to hang a shingle out as an autism expert, as I have not had the residency and specialty training in ASDs. DAN doctors are not so ethical.
“Please do not insult the physicians who have worked so hard to help our children by comparing them with DAN doctors.”
We should treat all doctors the same. Either they are competent, or they are not. I have met many doctors, DAN and non-DAN, that are not competent to treat ASD patients.
Hi Stork Doc -
“DAN doctors have not had residency or specialty training that includes and is specific in the treatment of autism and it’s medical management. ”
No such residency program, or specialty training for the medical management of autism exists! Please, show me a link to a residency program that is specific to autism and its medical management. Has Dr. Chez have speciality training in autism; was his residency specializing in autism? Who taught him mementine might be useful? You have set an impossible bar as qualifications, which by the way, the people you are using do not meet. I’m not saying he is poor at it; only that you seem to have one set of qualifications for the doctors you have access to, and another set for those of us who may not have the resources to privately communicate with neurologists practicing cutting edge research into autism.
“Off label use of medication by the physicians who are running the clinical trials is not comparable to chelation or HBOT or treatment of supposed candida infection by a DAN doctor who has no training in the care of ASD. ”
DAN doctors have plenty of experience treating children with autism; they are the only children they treat. Once again, you stipulate the impsosible, ‘training in the care of ASD’. What, precisely, constitutes this? What regulatory agency has training protocols for the awarding of such specializations?
“We consulted many of the physicians who have and are using memantine in children with autism. There are over 400 children with autism who have been treated and are currently being treated with memantine.”
These are open label studies and highly expiremental; just as I noted. I may have consulted with many physicians who have used HBOT to treat well in excess of 400 children. In any case, this is not a numbers game; the fact that 400 children have used this drug does not negate the need for placebo based, double blinded studies. Nor does it mean that safety studies for children have been performed. The argument seems to have changed from ‘evidence based medicne requires DBPC studies and safety profiles’ to ‘as long as I perceive the qualifications of the prescribing physician as sufficient, experimentation wihtout placebe based studies and safety profiles is OK.”
“They prescribe on the basis of labs that have no normative values, that have not been studied in the NT population, so they have no credible data to treat from. ”
Memantine has been studied in the NT population?
“I would never, as an OB/GYN, presume to hang a shingle out as an autism expert, as I have not had the residency and specialty training in ASDs”
The reason that so many of us goto DAN doctors is, as I pointed out, no such residency or specialty training programs exist. Please prove this statement incorrect.
I have insulted no one. I applaud Chez for working on the interactions of autism and the cholinergic system. More, much more is needed; now.
- pD
Just got back from Charlie’s annual check-up; he grew an inch over 2 months (95th percentile…..). Got the meningitis and Hepatitis A vaccines (the former is required for students entering 6th grade in NJ).
I had not heard of Dr. Chez’s book and thanks to StorkDoc for that and for your kind words! Discussion can get a little lively here and I appreciate that much and hearing the ideas of any and everyone.
It seems that some DAN! practitioners also treat children with other conditions? Dr. Kenneth Bock is one; his latest book is about asthma, allergies and autism as well? And he also treats lyme disease….. Dr. James A. Neubrander, another DAN! practitioner, notes on his website that he treats “Autism Spectrum Disorders, ADD, ADHD, Language Delays,
Apraxia, and Sensory Integration Problems.”
Kristina, congrats on Charlie’s growth! Alex too is in the 95th %tile on height, already up to my shoulders and just turned 7!
Glad he had a good checkup! We see our developmental pedi Thursday and I am excited for her to see how first grade is going for him! We recently got the not unexpected ADHD “label” from the school psych evals, although they cannot “diagnose” it, we have been suspecting it. Need to go over his big 3 year evals from the school with her.
I really enjoyed reading Dr. Chez’s book, it is well written and easy to read, and I think everyone can benefit from it.
I have enjoyed reading your blog here for the last, well almost a year now, I guess. I wish there were more people like you around my neck of the woods, I would love a little talk over Coffee! I am not so far from Kathleen, I would love to make her aquaintance.
Whatever happened to Autism Diva? I thought she had a new blog a few months ago. Now I can’t find anything from her. If you could point me in the right direction, I would greatly appreciate it! :0)
Karen
Thanks much—-coffee always sounds good (should make some now)—-Autism Diva posts sometimes at Left Brain/Right Brain—–Charlie was at my shoulders at 7 (I’m five feet tall and he’s now 7/8 inch officially taller than me). No mention of an ADHD or ADD label for Charlie though goes without saying attention is an “issue.”
Hello pD,
I had written out a lot of things in our debate here and accidentally lost it because I hit the wrong button! Sigh!
I must feed everyone and get them washed up and to bed! And hopefully, if everyone goes to bed without a problem, I will retype out my thoughts again!
Until later!
Kristina,
You are right-on! So sad, but very true. Thanks for sharing this.
Hi StorkDoc -
As always, the important stuff is better than arguing with people on the Internet. I am truly happy that you’ve seen improvements in your child, and that you’ve done so by some relatively new mechanisms. I’ve experienced very similar things; except you have (in my mind) insulted the people who helped me get there. We likely have other similarities.
Until then!
- pD
I’m not sure about other R1 settings, but Mayo/Univ. of Minnesota and U.C. Davis both have an opportunity for psychiatrists and neurologists to specialize in developmental disorders. I would assume other institutions are developing similar programs.
The U.C. programs are at Davis, Santa Barbara and Irvine with new programs under development at UCSF and San Diego.
“Appropriate applicants are planning an autism research career and have either (1) a doctorate in biomedical or behavioral science, or (2) an M.D.” Residency is from two to six years, depending on medical specialty.
Davis’ site:
http://www.ucdmc.ucdavis.edu/mindinstitute/education/postdoc_training/
My own goal is to return to work at one of the three U.C. campuses with an autism institute. Irvine is expected to add an autism “post-doc” for M.D. and Ph.D holders, similar to what Davis offers.
So, yes, you can do a post-doc and specialty in autism with a medical degree.
Kind of moving it away from the biological aspects of this, what I am wondering about is whether there is a list or central source of “best practices” model vocational training programs for students with autism?
That would, at least to me, be the kind of story that I would want people to be aware of. The other thing that I think would be significant is questionable incidents at such, which would be a statistic that I would think parents would like to know about.
Just a thought.
I really don’t want “Autism awareness month” 2009 to be “vaccine” or “biomed” awareness month. It just seems that there are many other relevant issues that could also be highlighted, and better yet, pursued. Kristina seems to have posted at least some of what those might be.
Perhaps this book, Educating Children with Autism from the National Research Council might offer a place to start regarding best practices?
Possibly, except that a search of vocational results in 3 hits, and the programs listed are primarily those for young children. There is some mention of “adaptive functioning” in regards to programs for those of school-aged and older.
I guess what I was driving at was outcome training and placement from such as Evergreen, Devereaux Millwood, Eden, Judevine, Alpine, PCDI, etc., or even such as Thistledown Farms.
“or such as Thistledown Farms”
Oops. Thistledown is our local. Scratch that.
Meant “Bittersweet Farms”.
Hello again pD,
Well, we will see if my 3 yr old will stay in bed. Hate to cut things short. I am unable to refocus when my train of thought is interrupted. That is how I erased the last attempt!
The most highly trained ASD doctors are of course the Fellowship trained Developmental Pediatricians, they receive a lot of training in the medical management of ASD. Fellowship trained Pediatric Neurologists are also well trained in ASDs as a part of their overall training. Fellowship trained Child Psychiatrists are also trained in the medical management of ASDs. General Pediatricians have some training, it is now better than when I was a medical student in the early 90’s, and even then they had rotations with the Pediatric Neurology and Developmental Pediatric sections.
These are the qualifications to be viewed as an expert on ASDs in the medical world.
DAN doctors who are not pediatricians, and many are not, have not had any rotations/training in the specific areas of the Fellowships listed above. There are surgeons, ENTs, OB/GYNs and other specialties or FPs who have had no training in the ASDs. Their respective Boards do not even test on these areas. There is no Board of DAN medicine, it is not a specialty. These DAN doctors, and this includes some of the pediatricians who get into the DAN, take a short course in the DAN protocol, read some articles and set themselves up as “autism experts” on the “biomedical treatments”. Many may have a child or a relative on the spectrum as a motivating factor. Many I believe are very sincere in their beliefs. But they are NOT autism experts.
This is how the medical world views it.
As for questions on Dr. Chez and others who have had the Fellowship training which does teach them the medical management of ASDs, of course, as new treatments and medications come, they review them and start the process of evaluation for efficacy in autism if they feel there may be benefit, based on their knowledge and training. They do not start clinical trials with a cavalier “let’s see how this works” attitude. They have an in depth knowledge of the biochemistry of the brain, evaluate a new medication based on it’s biologic activity, and design clinical trials, which are in phases. This is done with written protocols and certain ethical concerns are always evaluated, and these have to be reviewed and okayed by the government as well as the institutions it is conducted at. Just go to clinicaltrials.gov to see the list of trials. It takes months, even years, to put these trials together.
Because of this, it is completely different to be consulting and have a child treated by one of the Fellowship trained experts with a medication off label who is also involved in the clinical trials than by a DAN doctor. The medical world does not equate DAN doctors with Fellowship trained specialists.
Yes, I do have “insider information” because we happen to go to medical meetings to learn more about ASD and we do meet the doctors who are treating kids in the studies. I take my son to LADDERS and have gotten to know the doctors there. I am anxiously awaiting the publication on the large double blinded placebo controlled trial that finished in 2007 on memantine in the ASD population. I do happen to hear the reports at meetings on the preliminary findings as they are getting it ready for publication.
I made a statement about treating lab values that have no normative data. I was not speaking of memantine as there are no labs that are drawn or evaluated with it. I was speaking of many of the other DAN tests, like yeast in the stool, the urine and hair tests, and others. No one can reasonably interpret these test to even use them as a basis for treatment. I have spoken with Dr. Timothy Buie about the stool testing, as he treats my son. Everyone has yeast in their bowel. Everyone, with a reliable stool culture, will grow out yeast. Yet DAN doctors treat this all the time.
Not all of the DAN treatments are quackery, but a lot of them are, and I feel it is irresponsible to practice in this manner, setting yourself up as an autism expert. The whole HBOT fad is something that is costing families thousands of dollars without knowing if there truly is a benefit. Thank heaven there are several large trials at several well known medical centers that will answer that question. With the 2 articles published in Medical Hypothesis, the anesthesiologists I know, and they are experts in gasses and partial pressures, you could do just as well going to an oxygen bar and breathing in a few liters of oxygen through a nasal canula. Much cheaper. And you would get the same ABG results.
I am just telling you how this is all viewed in the medical world. It is the world I live in and have worked in. We have followed the exact medical management as outlined in Dr. Chez’s new book. He surely says it better than I can.
Chuck,
“I have met many doctors, DAN and non-DAN, that are not competent to treat ASD patients.”
I have to agree with you there. I sometimes say some doctors will not have the “privilege” of treating my son because they lack the knowledge and do not have the interest to learn about ASD.
:0)
Tracy,
You might be interested in the chapter in Dr. Chez’s new book on “Immunology and Autoimmunity: Is there a causal relationship with autistic spectrum disorders?”, it addresses the issues you brought up. It is this discussion my husband had with Dr. Chez on the research that lead us to the decision to use memantine. He discusses in depth about glutamate playing an end-stage role in cellular damage in certain autoimmune and cytokine responses. He discusses the cross-reactivity of some antibodies with NMDA receptors that modulate glutamate and that mediate cellular toxicity and damage.
If you read what I wrote to pD, you may begin to understand how the medical community views DAN’s alternative treatments and DAN doctors.
Here is an article on Dr. Chez:
http://www.individual.com/story.php?story=80049935
“Chez acknowledged he uses some drugs not yet approved by the Food and Drug Administration for children, or for autism symptoms. But he points out that he would — and has — done the same for his own children”.
So, Dr. Chez uses experimental drugs on his own children, gives a testimonial…
Isn’t that complaint he has against DAN?
I think DAN might nominate him for clinician of the year
Found ‘em.
At least a couple, but I’ll probably try and collate some more at some point.
Best Practices for Serving Adults with Autism
Results of the study on services and supports
for adults on the autism spectrum across
the United States
Full Research Report
Autism Society of Delaware 2006
http://www.delautism.org/best_practices_adults.htm
Meeting the Needs of Adults with Autism: A BLUEPRINT FOR THE FUTURE
The New Jersey Center
for Outreach and Services
for the Autism Community (COSAC), 2006.
http://www.njcosac.org/cosac2/PDF/whitepaper.pdf
Am biased, but I really recommend the COSAC report. I went to a strategic planning session for COSAC a few months ago and the issues in the white paper were the key topic.
StorkDok:
I’m curious about where there is any data that supports a role of glutamate-like activity leading to brain injury in autistic children. Clearly there is that component present in hypoxic ischemic secondary brain injury, as well as with infection, as you are no doubt well aware. However, I can’t help but be skeptical about any treatment such as this, especially since I have not seen a lot of PR literature to support it.
As an aside, I love how previous posters have made statements essentially saying “everyone knows” that vaccines adversely affect the immune system. These types of comments are ubiquitous in this “debate”. Beware of statements such as “studies clearly have shown”, or “the debate is over — (blank) causes autism” or “(blank) has clearly been shown to help autistic individuals” — always with no references.
When they do cite references, it is much like SD has said. Never in a peer-reviewed journal, never replicated data, nearly always with ethically questionable data mining and statistical gymnastics, as well as dramatic leaps to conclusions unsupported by their data.
One more thing, you will note that these references are always done by “the top scientists in their fields” — who obviously cannot get published because of conspiracy by the NIH, CDC, AAP, AMA, WHO, FDA, all of which are, of course, under the control of “Big Pharma” — Boo!
Hi CS Wyatt -
“So, yes, you can do a post-doc and specialty in autism with a medical degree.”
Specialty in autism; sure. But in the ‘medical management’ of autism? No. There is exactly one drug that is approved by the FDA to treat autism, risperdal. Do these people getting post docs spend years studying risperdal? I doubt it. If they spend years studying other, unapproved drugs, then they are just like a great many of us; operating in a world without double blind placebo controlled tests to help us determine if what we are trying is having an impact or not. They are involved in pure research, we are involved in daily life.
- pD
- pD
Hi StorkDoc -
You wrote a long peice, one that deserves more attention than I can get to during ‘coffee time’. We seem close to starting to argue different things; which seems to happen frequently in this type of discussion. I’ll try to respond later though.
- pD
pD-
I think our debate is definitely what Kristina’s post here is talking about, making autism month about these medical issues, when the real focus should be on getting our kids the services and education they need as children and as adults. I really didn’t want to bring the focus off of her, and so if it is okay with you, could we continue our discussion on my website or by email? I was so tired last night my focus was narrow, and I really feel bad I kind of hijacked her post here.
I also have to get ready for the dreaded mammogram today, so I will be a bit busy, as well as school being out so both my boys are keeping me hopping this week. My email is storkdok@aol.com
Have a great day, everyone!
Karen
I don’t think Dr. Chez is DAN! but he’s close. Until his studies are independently replicated, they should be taken with a grain of salt.
I agree with Joseph’s take. I’ve known of Chez for well over a decade. He’s what some of us refer to as a “BMD” (Brave Maverick Doctor).
Kristina,
Favoring the COSAC report isn’t bias, it’s informed knowledge (smile); the organization has done a great job staying on top of issues for quite a few years and certainly shows great leadership.
Although I haven’t seen the Educating Children with Autism report being sufficient to influence policy (although given that it was its raison-etre) for best practices, it may have been necessary to at least lay out what they should be (although in a couple of years they should probably give it the once over for currency).
It would be nice to convene a similar panel to address the transition and adult services/support needs. I think that I could give up funding of another mouse study to have such a report composed.
UNCDoc,
If you’re gonna quote someone, get it right: I said ““Everyone knows” that vaccines can be contraindicated for patients with dysfunctional immune systems.” I did not blanketly say “that vaccines adversely affect the immune system. ” as you did. In case you can’t tell, these are very different statements. Yours implies causation, not mine.
Here’s a source you should know of for this: the CDC. http://www.cdc.gov/vaccinesafety/00_pdf/draft_agenda_recommendations_080404.pdf
I posted this above, see the sections on cytokines. Also see the goals and priorities on page 25:
goal: Guidelines for minimizing risk of VAEs in immunocompromised persons.
And you can find info specifically listing comprised immune systems on the package insert of nearly all vaccines as a contraindication (are you a medical doctor, UNCDoc?-just asking)
If you are going to argue, stick to the merits. Twisting someone’s words without a point makes you look like you have nothing to say (that’s worthwhile). It’s a cheap shot.
Storkdoc, I have read some of Chez’s work and agree with you. I was simply enjoying the irony on the similarities in treatment, from my perspective. I wish you and your child well. All I ever wanted was to illustrate the point that calling DAN docs quacks as a group is inappropriate as there is a great degree of difference in treatment. Unfortunately, parents have to sort out which docs to trust and as someone else noted, there are bad ones on each ’side’.
One last thing, Sid Baker, the OBGyn you’re critiquing for yeast…my son has had multiple yeast rashes on his butt, once (the first time) after antibiotics and three times no where near any antibiotic use for months. There is something to this. I understand everyone has yeast and any culture should grow it out, but my son’s rear should not be growing it out!
Personally, I agree with the theory that the stress response could be causing digestive disturbances by impeding function of the parasymp side to such an extent that motility and pancreatic function is impaired leading to dysbiosis.
You can cast the yeast test results off as nothing, but I can tell you that my son and several other children I know have also have low stool pH, low levels of beneficial bacteria and low enzyme levels on stool test. Implementing a DAN docs advice helped my son’s stools return to normal, when other doctors wouldn’t or couldn’t address it.
To each his own, but I know that my DAN doc has helped my son– moreso, I believe, than the docs we otherwise have access to in my town and even state could have helped.
@UNCDoc,
You pointed out the use of “everyone knows” as in “everyone knows X about vaccines and the immune system”—-it’s the rhetoric of the “absolute,” something to be wary of indeed.
C.S. Wyatt pointed us to the MIND institute’s link as one of just a couple very new “specialty” autism training grounds. I think the MIND Institute is great and would encourage you all to look at their position on vaccines, thimerosal and other potential environmental causes of autism; read the whole thing, not the first two paragraphs only. Here’s a quote “There is emerging evidence that some children are immunologically compromised and therefore may respond in an atypical way to vaccinations. We do not currently understand how atypical immune responses might influence the developing nervous system or how commonly such adverse effects occur. Further, we currently have no way to identify those children who might respond adversely to vaccines. ” But really, read the whole thing to get their flavor. They want more research to be done.That’s all I want too. (not just on vaccine issues)
These ARE the people I want training docs on autism. This all is about autism awareness, as this Kristina’s post is about. It’s about treatment, research and identifying causes and cures for those severely affected.
and read this intersting news release on abnormal expression of NK cell genes in autism:
http://www.ucdmc.ucdavis.edu/mindinstitute/newsroom/newsdetail.html?key=421&svr=http://www.ucdmc.ucdavis.edu&table=published
and this one on prenatal immune exposure:
http://www.ucdmc.ucdavis.edu/mindinstitute/newsroom/newsdetail.html?key=425&svr=http://www.ucdmc.ucdavis.edu&table=published
They note growing evidence which finds differences in the immune system in autism.
I don’t post these to make you heckle the MIND institute as becoming DAN docs (which are frequent presenters at their “distinguished lecturer series”; rather I am hoping you’ll realize I am coming at this from a peer-reviewed quality research POV as well. I just happen to see a DAN and I am not embarrassed by it.
This is potentially getting off-topic—-we’ve been referring to “DANs” as if those who treat autistic patients using the DAN! protocol are all the same. But some practicioners have medical degrees, some don’t—-they may be nutritionists, chiropractors, etc…..perhaps not all DAN! practitioners are “equal” or the same…….perhaps….
Okay. TS is correct. I did not quote her exactly. I apologize for that.
The reason that some live vaccines are not given to immune compromised individuals (such as HIV, chemotherapy, SCIDS), is because of the potential for reversion of viral particles to wild-type, and the child having insufficient immune surveillance and/or response to fight a true pathogen. So that is that. Autistic children are not immune compromised, so you are tugging at a red herring.
With regard to cytokines, I am not aware of that data, but I would be happy to review it if you provide a citation. Hopefully it has a large enough sample (with simultaneous controls) so that the results are meaningful. Cytokines tend to be elevated in any number of conditions, and are often non-specific acute-phase reactants. Still, if the profiles of autistic children are different, it would certainly be interesting. However, it would prove nothing about any vaccine causation. Keep trying, though.
The fact is, that autistic children are different in any number of ways, from a developmental standpoint, implying more genetics or intrauterine influences (no, not maternal mercury ingestion) than anything else. Anatomically they tend to have larger heads, and a recent study (which I can provide for you if you desire) also noted differences in ears and palates in a percentage.
You should familiarize yourself with the data on in utero brain growth, differences in apoptosis, and changes in the ability to modulate sensory input. During the last trimester (that would be before vaccines, by the way), this remodeling is taking place at a remarkable rate. A study recently in the Journal of Pediatrics, I believe, showed a very interesting increase in autistic behaviors amongst premature infants. It’s not difficult to see how this could occur, given the extreme sensory battery in the NICU (despite our best efforts to be developmentally supportive), could lead to all sorts of sensorineural developmental problems in susceptible infants.
In other words, there is a lot of fascinating stuff out there, and a lot to learn.
TS, you need to get past your hysterical knee-jerk anger and defensiveness. I would suggest you actually read some actual peer-reviewed research rather than spend all your time on anti-vax echo chamber web sites.
Peace.
Sincerely, UNCDoc (The Medical Doctor).
It’s about treatment, research and identifying causes and cures for those severely affected.
————————-
My Eleanor is severely affected.
My point of view is somewhat different.
I would like some focus shifted off of the more sexy what-ifs, and onto the more prosaic which affects us daily and may for a long time if the hotly debated certainties of today don’t pan out, or don’t pan out for a substantial portion.
How to teach her best, how to have those who are competent and highly qualified do so, how to increase access to consistency of services for all and not just those who can pay out of pocket, how to provide more system support in coordinated roadmaps for families, how to plan for a humane support service so that those who are not going to “recover” by adulthood have valued, respectful means of living and contributing to society so that they don’t waste talents and capabilities that they do have and that we fund during the school years.
Despite our best efforts, there may be many things that cannot be cured, however that doesn’t mean that a useful and valued life cannot be in the cards if we make an effort to plan ahead or even better, make a real start (I think that I have already seen enough plans and reports to last a lifetime).
Amen, Regan. I’m the same way about my little one. Unfortunately there is too many lawyers and “victims” looking for a big payday, as well as charlatan chelators and fad therapists who have a major financial stake in shunting funding away from your more appropriate causes.
Nice to see a few sober posters around here.
Kristina,
Couldn’t agree more. And Regan, I love reading your comments. I learn so much from you.
One of the things that is involved in herpes virus activation is Nuclear Factor kappa Beta, and NFkB is inhibited by NO. Stress lowers NO and causes the activation of NFkB.
Activation of NFkB does cause expression of iNOS, and that is what causes the very high NO levels that occur during fevers. That high NO is transient and there can be compensatory feed-back rebound down-regulation (what I call the low NO ratchet) which lowers the NO level once the iNOS is cleared. This can cause long term reductions in basal NO which can persist though hysteresis. I discuss this in my blog in the mechanisms by which fevers temporarily resolve some symptoms of autism.
http://daedalus2u.blogspot.com/2008/01/resolution-of-asd-symptoms-with-fever.html
Argh, like StorkDok, I fell prey to hitting submit too soon and lost my long post.
Regan, I feel you. Maybe your child is older than mine. I have a five year old. He can’t talk. He is not potty trained. He is a beautiful, affectionate and happy child. I love him in a way that makes my heart feel like it will burst. I want him to have the best treatment and best chances for being happy. But I will change his diapers until I am 110 if I can.
I have worked for weeks here in Florida trying to get a bill passed to cover autism under insurance. This is because I consider ABA to be treatment, along with medical intervention. I am not generally a blogger (it’s a waste of time LOL). I spend my time reading literature and advocating. I am still of the mindset that as a medically based diseases, autism and/or it’s symptoms can be alleviated by intervention. To me, it is about treatment, hope and love. And it will be until he gets better or I am dead.
UNCDoc–I love it. You try to insult me, misquote me, go on and on about no evidence when I sent a link from the perfect source, and then call me antivaccine. And then, tell me to stop being knee-jerk and defensive? You can’t expect to be a jerk and not get a little backlash, ok? I already am aware of BDNF and the early large brain effect that levels off with age, but clearly is related to the pathology. I know about prenatal effects such as diet and flu being factors for epidemiological increases in autism. So don’t ask for cytokine papers in one breath and tell me I haven’t read enough in the next, ok? I typed more to you earlier that I lost (blogging novice) so I’m gonna keep it short this time: don’t assume you know me. I am not a “mercury mom” and I am not a vaccine litigant. I find it one of many interesting avenues of study in autism. The CDC finds it interesting that high cytokines are associated with typical events such as fever and seizures. Regardless of the underlying cause of the cytokines (could be anything, infection, genetics etc–does not have to be prior vax), this is an interesting result since ctyokines are elevated in autism. Period. I didn’t say causation of vaccines, that’s YOUR words, don’t push that on me.
My personal guess is that they are already elevated before any vaccine, not because of one. That’s opinion however. I’ll send you links to the studies, you can email me at tss8432@yahoo.com. Seriously, the immune angle is interesting, even without vaccines, and you should look more into it. I am not saying that obnoxiously, as it seems you did to me.
Tracy,
Thanks for your reply. Eleanor is a little older, but it does seem like only yesterday she was 5 and things are moving, but still too slowly for what might be needed. Hence my cautionary note.
Best to you for your efforts in FL. I did some advocacy work in my own state so I know it takes a lot of time and strategic juggling. I do some other work on other matters related to disseminating info on what is out there to help move it forward. As do many others. Thanks for your part.
Alright, TS. Sounds like it’s just about your bedtime. I’ll let you have the last word.
I bowed out earlier because I thought that I was contributing to the spirit of Kristina’s post on Autism Awareness month being taken over by the quibbling about vaccines (and DAN doctors and DAN protocol and the medical research) instead of more pressing issues like the education of our children.
We can all hopefully agree that the issues we face daily in advocating for our children for their educational needs and life skills, providing for the day to day needs of our children, are uppermost on our minds. And don’t even get me started on the respite and other home services (sucks when even existent, excuse my language). The research and vaccine and DAN discussions are important, and we will have to agree to disagree on much of this, but what effects us most is the day to day education of our children.
There is awareness, so much so that I and other parents I know get complaints from NT families about why we have to keep bombarding them with “autism is 1:150″, etc. What these NT families haven’t heard, because I ask them, is what the day to day is like and that our children do learn skills, that there are sometimes big differences between our kids as it is a spectrum, and why special education is important, that these kids are growing up and there are adult autistics. I put that SPED reference in because here in Maine we have finally gotten a budget that is NOT slashing SPED and MaineCare and the adult services, like our governor was trying to do.
If we can’t stop arguing and agree to disagree on some of these issues to then hopefully provide a united front on the more important issues of education and our children’s day to day needs, then how are we going to get things done for our kids? Whatever you believe or hope for, a “cure”, “recovery”, or just basically helping your child to achieve their highest potential (my view), can we tone it down to focus on the most important issues, education and providing for the day to day needs, planning for the future and providing services for the adults who are in our society right now?
Okay, I am getting off my soapbox now, and hopefully I will hit the correct button and not erase this!
Everyone, I hope you have a great day!
Karen
Agreed, Karen. The sad part is that it takes legislators and people in charge, so to speak, to experience autism firsthand before you can get some action (several people working on the FL bill have autistic children or nieces/nephews). Unfortunately, in the same year they’re considering insurance coverage that specifically includes ABA and services like OT and ST for early intervention, they’re horrendously cutting the state medicaid services used most by older children and adults (respite, other living services). I’m all for early treatment, but you don’t cut off those that it wasn’t there for at the time!
I am sure much of it is misclassification, but it’s interesting that 2/3 of the people receiving autism services under Medicaid in FL are children under 18 (and nearly all of them are 10 or over because the waiting list is 7-10 years for help!) Only 1/3 are adults (many may be MR misclassified). Two people over the age 64 with autism services in the entire state. As more correctly classified persons with autism age, it will definitely bring a new dimension to the term “autism awareness”. Nothing gets the public and gov’t attention like billions of dollars of costs.
Education and services are something that (I think!) we can (?) more or less agree that we need and that there needs to “more” of: Better traing and supports for teachers and therapists. Better programs for all ages of students and for adults (and those programs would differ depending on individuals’ needs—-supports for autistic college students, day programs for others, job coaches…..). One frustration with all the $$ that (seem to) go to reseach are that those $$ don’t go directly to autistic persons and their families.
Definitely not enough money goes to families! But the research is still important to try to improve the health and condition of those already affected, or maybe even preventing cases by knowing causes. (ie, spina bifida research after years yielded the folic acid recommendations during pregnancy). There are likely many different reasons people develop autism, making it more difficult.
Here is a good immune system review article for those interested: http://www.jleukbio.org/cgi/reprint/80/1/1
UNC, I have about 60 or so others citations from pubmed,too long to list here. Anyone else interested can email me for them as well.
Kristina, I can send you a synopsis of the final bill that gets passed here (session ends next Friday, so it’ll be soon) if you would like. I hope by making insurance coverage for some services available, families will be able to afford more services and our kids will have the supports to reach their max potential, whatever that is.
I’d like much to get a synopsis—thank you. It’s a two (plus) – headed effort, research and services.