Search results for 'mito'

Mark Geier: My therapy is unconventional, but it works

17 Jun

Dr. Mark Geier is appealing the suspension of his medical license. The license suspension order includes (as summarized by Kathleen Seidel at Neurodiversity.com):

• In six out of nine of these cases, the board determined that the children were misdiagnosed with precocious puberty. Children were diagnosed with precocious puberty without the benefit of a physical examination; some were too old to qualify for the diagnosis.

• Medical records and medical necessity letters prepared by Dr. and Mr. Geier indicated that children were diagnosed not only with precocious puberty, but also with pituitary dysfunction, insomnia, aggression, mitochondrial disorder, metabolic dysfunction, and “heavy metal toxicity” when neither test results nor parent reports suggested anything of the sort.

• In one case, the only record of the diagnosis of precocious puberty was a code number entered onto a standing order for lab tests. In another, no note was made in the medical records of the date the child began treatment with Lupron. Yet another patient’s file contained no indication that Dr. Geier reviewed any of the results of the numerous, burdensome diagnostic tests he had ordered.

• The order describes claims submitted to at least one insurance company for a psychiatric interview and “prolonged evaluation and management” services that were never rendered.

• The order further describes an occasion when David Geier, who is not licensed to practice medicine, conducted a medical evaluation and diagnostic tests, made diagnoses, and recommended treatments for an autistic boy in Dr. Geier’s absence.

• Additionally, the Board determined that Dr. Geier misrepresented his qualifications as a geneticist, and misrepresented the ability of his Institutional Review Board to conduct oversight of his research.

Dr. Geier has taken his case to the public in an opinion piece in the Baltimore Sun: Autism doctor: My therapy is unconventional, but it works. He certainly has the right to present his case to the Sun, and while I would not have published the letter were I editor, the Sun is within its rights to host the letter. I am within my rights to comment on the letter, and I took that opportunity in the comments as you will see (complete with typos) if you follow the link.

Dr. Geeir opens with a simple statment “If there’s a single statement that everyone who works in the field of autism can agree on, it’s that there is so much that we still don’t know.” This is incomplete: there is much we do know. We know that the theories Dr. Geier has proposed are wrong. We know that the rise in autism is not due to mercury. Certain tests should be performed before a child is diagnosed with precocious puberty. Tests which the charges indicate Dr. Geier failed to do on many occasions. We know that treatment for precocious puberty should stop at an age when puberty is expected. Dr. Geier is charged with initiating and/or continuing treatment in children too old to be diagnosed with precocious puberty.

Dr. Geier has published many papers in the literature, this is true. These papers have been widely criticized by researchers. Not because the ideas are unconventional, but because the ideas are ill founded and the experimental methods are poor. Dr. Geier has been described as “intellectually dishonest” for his work as an expert witness. The Institute of Medicine has referred to Dr. Geier’s papers as suffering from “serious methodological flaws and their analytic methods were nontransparent, making their results uninterpretable”

There is much we do not know. On thing we do know: we deserve better than Mark Geier

Perhaps it is the frustration of having read the recent article by the Geiers in the new “autism science digest”. Perhaps it is the fact that I listened to a podcast interview with the Geiers in preparing my recent response to the article. Perhaps it is just the years of reading bad science and waiting for someone to act against these people, but my patience is worn rather thin, as you will see in the comments.

US proposes $154M in new autism research projects

1 Mar

The Interagency Autism Coordinating Committee (IACC) is charged with creating the “Strategic Plan“. This document lays out research priorities for the US government to pursue in the upcoming years.

The full plan is available ether by html or pdf.

If you’ve watched IACC meetings, you know that a lot of time goes into word smithing. They work out the wording that will go into the document and convey the messages with the best balance of the various viewpoints represented by the committee. Not to belittle that effort, but when the rubber hits the road, what gets into the budget is what matters most to me.

With that in mind, I’ve summarized the new objectives (long-term and short-term) that were added in 2011.

I also went through and quickly summed up the new item budget amounts. Forgive me if I missed anything, but here is what I got. First as a brief summary:

Question 1: When Should I Be Concerned?:
2 new objectives. $9,635,000

Question 2: How Can I Understand What Is Happening?:
no new objectives. $0

Question 3: What Caused This To Happen And Can This Be Prevented?:
6 new objectives. $90,570,000

Question 4: Which Treatments and Interventions will Help?:
3 new objectives. $45,500,000

Question 5: Where Can I Turn for Services?: 3 new objectives.
$3,800,000

Question 6: What Does the Future Hold, Particularly for Adults?:
no new objectives. $0

Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?:
3 new objectives. $4,950,000

Total: 17 new objectives. $154,455,000

And as a more detailed summary:

Question 1: When Should I Be Concerned?
Aspirational Goal: Children at Risk for ASD Will Be Identified Through Reliable Methods Before ASD Behavioral Characteristics Fully Manifest.

New Short-Term Objectives:

2011 E. Conduct at least one study to determine the positive predictive value and clinical utility (e.g., prediction of co-occurring conditions, family planning) of chromosomal microarray genetic testing for detecting genetic diagnoses for ASD in a clinical setting by 2012. IACC Recommended Budget: $9,600,000 over 5 years.

2011 F. Convene a workshop to examine the ethical, legal, and social implications of ASD research by 2011. The workshop should define possible approaches for conducting future studies of ethical, legal, and social implications of ASD research, taking into consideration how these types of issues have been approached in related medical conditions.IACC Recommended Budget: $35,000 over 1 year.

New Long-Term Objectives: None.

Question 2: How Can I Understand What Is Happening?
Aspirational Goal: Discover How ASD Affects Development, Which Will Lead To Targeted And Personalized Interventions.

New Short-Term Objectives: none.

New Long-Term Objectives: None.

Question 3: What Caused This To Happen And Can This Be Prevented?
Aspirational Goal: Causes Of ASD Will Be Discovered That Inform Prognosis And Treatments And Lead To Prevention/Preemption Of The Challenges And Disabilities Of ASD.

New Short Term Objectives:

2011 F. Initiate studies on at least 10 environmental factors identified in the recommendations from the 2007 IOM report “Autism and the Environment: Challenges and Opportunities for Research” This link exits the Interagency Autism Coordinating Committee Web site as potential causes of ASD by 2012. IACC Recommended Budget: $56,000,000 over 2 years.

2011 G. Convene a workshop that explores the usefulness of bioinformatic approaches to identify environmental risks for ASD by 2011. IACC Recommended Budget: $35,000 over 1 year.

2011 H. Support at least three studies of special populations or use existing databases to inform our understanding of environmental risk factors for ASD in pregnancy and the early postnatal period by 2012. Such studies could include:

* Comparisons of populations differing in geography, gender, ethnic background, exposure history (e.g., prematurity, maternal infection, nutritional deficiencies, toxins), and migration patterns; and

* Comparisons of phenotype (e.g., cytokine profiles), in children with and without a history of autistic regression, adverse events following immunization (such as fever and seizures), and mitochondrial impairment. These studies may also include comparisons of phenotype between children with regressive ASD and their siblings.

Emphasis on environmental factors that influence prenatal and early postnatal development is particularly of high priority. Epidemiological studies should pay special attention to include racially and ethnically diverse populations. IACC Recommended Budget: $12,000,000 over 5 years.

2011 I. Support at least two studies that examine potential differences in the microbiome of individuals with ASD versus comparison groups by 2012. IACC Recommended Budget: $1,000,000 over 2 years.

2011 J. Support at least three studies that focus on the role of epigenetics in the etiology of ASD, including studies that include assays to measure DNA methylations and histone modifications and those exploring how exposures may act on maternal or paternal genomes via epigenetic mechanisms to alter gene expression, by 2012. IACC Recommended Budget: $20,000,000 over 5 years.

2011 K. Support two studies and a workshop that facilitate the development of vertebrate and invertebrate model systems for the exploration of environmental risks and their interaction with gender and genetic susceptibilities for ASD by 2012. IACC Recommended Budget: $1,535,000 over 3 years.

New Long Term Objectives: None.

Question 4: Which Treatments and Interventions will Help?
Aspirational Goal: Interventions Will Be Developed That Are Effective For Reducing Both Core And Associated Symptoms, For Building Adaptive Skills, And For Maximizing Quality Of Life And Health For People With ASD.

New Short Term Objectives:

2011 G. Support at least five studies on interventions for nonverbal individuals with ASD by 2012. Such studies may include:

* Projects examining service-provision models that enhance access to augmentative and alternative communication (AAC) supports in both classroom and adult service-provision settings, such as residential service-provision and the impact of such access on quality of life, communication, and behavior;

* Studies of novel treatment approaches that facilitate communication skills in individuals who are nonverbal, including the components of effective AAC approaches for specific subpopulations of people with ASD; and

* Studies assessing access and use of AAC for children and adults with ASD who have limited or partially limited speech and the impact on functional outcomes and quality of life.

IACC Recommended Budget: $3,000,000 over 2 years.

2011 H. Support at least two studies that focus on research on health promotion and prevention of secondary conditions in people with ASD by 2012. Secondary conditions of interest include weight issues and obesity, injury, and co-occurring psychiatric and medical conditions. IACC Recommended Budget: $5,000,000 over 3 years.

New Long Term Objectives:

2011 D. Support at least five community-based studies that assess the effectiveness of interventions and services in broader community settings by 2015. Such studies may include comparative effectiveness research studies that assess the relative effectiveness of:

* Different and/or combined medical, pharmacological, nutritional, behavioral, service-provision, and parent- or caregiver-implemented treatments;

* Scalable early intervention programs for implementation in underserved, low-resource, and low-literacy populations; and

* Studies of widely used community intervention models for which extensive published data are not available.

Outcome measures should include assessment of potential harm as a result of autism treatments, as well as positive outcomes. IACC Recommended Budget: $37,500,000 over 5 years.

Question 5: Where Can I Turn for Services?
Aspirational Goal: Communities Will Access And Implement Necessary High-Quality, Evidence-Based Services And Supports That Maximize Quality Of Life And Health Across The Lifespan For All People With ASD.

New Short Term Objectives:

2011 D. Support two studies to examine health, safety, and mortality issues for people with ASD by 2012. IACC Recommended Budget: $4,500,000 over 3 years.

New Long Term Objectives:

2011 D. Evaluate at least two strategies or programs to increase the health and safety of people with ASD that simultaneously consider principles of self-determination and personal autonomy by 2015. IACC Recommended Budget: $2,000,000 over 2 years.

2011 E. Support three studies of dental health issues for people with ASD by 2015. This should include:

* One study on the cost-benefit of providing comprehensive dental services, including routine, non-emergency medical and surgical dental services, denture coverage, and sedation dentistry to adults with ASD as compared to emergency and/or no treatment. IACC Recommended Budget: $900,000 over 3 years.

* One study focusing on the provision of accessible, person-centered, equitable, effective, safe, and efficient dental services to people with ASD. IACC Recommended Budget: $900,000 over 3 years.

* One study evaluating pre-service and in-service training program to increase skill levels in oral health professionals to benefit people with ASD and promote interdisciplinary practice. IACC Recommended Budget: $900,000 over 3 years.

Question 6: What Does the Future Hold, Particularly for Adults?
Aspirational Goal: All People With ASD Will Have The Opportunity To Lead Self-Determined Lives In The Community Of Their Choice Through School, Work, Community Participation, Meaningful Relationships, And Access To Necessary And Individualized Services And Supports.

New Short-Term Objectives: none
New Long-Term Objectives: none

Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?
Aspirational Goal: Develop And Support Infrastructure And Surveillance Systems That Advance The Speed, Efficacy, And Dissemination Of Autism Research.

New Short- and Long-Term Objectives

2011 N. Enhance networks of clinical research sites offering clinical care in real-world settings that can collect and coordinate standardized and comprehensive diagnostic, biological (e.g., DNA, plasma, fibroblasts, urine), medical, and treatment history data that would provide a platform for conducting comparative effectiveness research and clinical trials of novel autism treatments by 2012. IACC Recommended Budget: $1,850,000 over 1 year.

2011 O. Create an information resource for ASD researchers (e.g., PhenX Project This link exits the Interagency Autism Coordinating Committee Web site) to share information to facilitate data sharing and standardization of methods across projects by 2013.

* This includes common protocols, instruments, designs, and other procedural documents and should include updates on new technology and links to information on how to acquire and utilize technology in development.

* This can serve as a bidirectional information reference, with autism research driving the development of new resources and technologies, including new model systems, screening tools, and analytic techniques.

IACC Recommended Budget: $2,000,000 over 2 years.

2011 P. Provide resources to centers or facilities that develop promising vertebrate and invertebrate model systems, and make these models more easily available or expand the utility of current model systems, and support new approaches to develop high-throughput screening technologies to evaluate the validity of model systems by 2013. IACC Recommended Budget: $1,100,000 over 2 years.

US plan for autism research: focus on environmental causation re-emphasized

28 Feb

The Interagency Autism Coordinating Committee has released the 2011 Strategic Plan. This maps out the proposed directions that government funded research should take in regards to autism in the coming years.

The area that gets the most scrutiny is causation research, so I am blogging it first. Once again, the IACC has put forth a program with the major emphasis on environmental causation projects, with over 70% of funding going towards environmental causation:

Under short term objectives for “Question 3: What Caused This to Happen and Can It Be Prevented?” there are 6 new objectives for 2011. No new “long term” objectives.

Initiate studies on at least 10 environmental factors identified in the recommendations from the 2007 IOM report “Autism and the Environment: Challenges and Opportunities for Research” as potential causes of ASD by 2012. IACC Recommended Budget: $56,000,000 over 2 years.

Convene a workshop that explores the usefulness of bioinformatic approaches to identify environmental risks for ASD by 2011. IACC Recommended Budget: $35,000 over 1 year.

Support at least three studies of special populations or use existing databases to inform our understanding of environmental risk factors for ASD in pregnancy and the early postnatal period by 2012. Such studies could include:
o Comparisons of populations differing in geography, gender, ethnic background, exposure history (e.g., prematurity, maternal infection, nutritional deficiencies, toxins), and migration patterns; and
o Comparisons of phenotype (e.g., cytokine profiles), in children with and without a history of autistic regression, adverse events following immunization (such as fever and seizures), and mitochondrial impairment. These studies may also include comparisons of phenotype between children with regressive ASD and their siblings.
Emphasis on environmental factors that influence prenatal and early postnatal development is particularly of high priority. Epidemiological studies should pay special attention to include racially and ethnically diverse populations. IACC Recommended Budget: $12,000,000 over 5 years.

Support at least two studies that examine potential differences in the microbiome of individuals with ASD versus comparison groups by 2012.
IACC Recommended Budget: $1,000,000 over 2 years.

Support at least three studies that focus on the role of epigenetics in the etiology of ASD, including studies that include assays to measure DNA methylations and histone modifications and those exploring how exposures may act on maternal or paternal genomes via epigenetic mechanisms to alter gene expression, by 2012. IACC Recommended Budget: $20,000,000 over 5 years.

Support two studies and a workshop that facilitate the development of vertebrate and invertebrate model systems for the exploration of environmental risks and their interaction with gender and genetic susceptibilities for ASD by 2012. IACC Recommended Budget: $1,535,000 over 3 years.

Many have claimed in the past that the IACC has not supported environmental causation. This is just not true, and it is not true going forward. Causation research in the past few Strategic Plans has focused the majority of funding on environmental and gene-environment causation.

Many have claimed that this blog is somehow against environmental causation research. Again, this is clearly not true.

I doubt either argument will go away. But, those are minor issues. What is important is what gets done. Causation research is important.

I would, and have, argued that research into supporting autistics alive today is also highly important. Research involving issues concerning autistic adults is vastly underfunded in my view. Total budget for new projects in the “WHAT DOES THE FUTURE HOLD, PARTICULARLY FOR ADULTS?” is zero. That’s right. No new projects in this area.

Besides neglecting the needs of a large number of adults today, this is poor planning for the future of today’s children. A person will spend about 75% of his/her life as an adult. Much, if not most, of that time without the support of parents.

Chatting with Seth Mnookin

18 Jan

I don’t want to call what follows an interview as:

a) I’m not that grand
b) It was more friendly than that

So what follows was a meandering email chat Seth and I had about the release of The Panic Virus (Amazon UK, US and CA) and the content in it.

KL: You mention in the book that one reason for writing it was that as a new dad you were keen to explore the issue of vaccination in relation to autism. Do you feel that you’ve come away from the writing process with a greater personal (as a dad) idea(s) of what the vax/anti-vax opposing beliefs are?

SM: Actually, I started the book before I was a father…and before my wife was pregnant. I think it was one of the reasons I was so curious about the topic: I hadn’t experienced the debate on a personal level and so I found it hard to understand how different people I respected could disagree so strongly about the facts.

I’m not sure whether this is a result of the writing/research process or of my becoming a dad, but I feel like I have an understanding of where both sides are coming from–and why they get so frustrated. I can’t pretend to know what my reaction would be if I believed that vaccines had harmed my child.

KL: Do you feel you share the sense of frustration that ‘pro-vaccine’ people have now the book is completed?

SM: That’s a hard question to answer. Overall the situation is extremely frustrating. I feel frustration that the issue has been so poorly covered by the media, and I think our handling of the story has as much as (or more than) anything else to do with where we’ve ended up. I’m also frustrated by the handful of self-anointed experts, like Bob Sears, who give the impression that heeding their (or parents’/patients’) instincts are the proper way to go about dealing with medical decisions.

But I think one of the things that makes this such an intractable issue is that there are not a lot of opportunities for people on opposing sides to sit down and have an actual, human-to-human conversation — at this point emotions are so pitched and the stakes are so high (or feel so high) that a sort of bunker mentality has set in. I was lucky: I cam to this without a horse in the race, as it were, so I was able to have what I think were open and honest conversations with people that I know disagree strenuously with the conclusions I ultimately arrived at.

KL: Thats an interesting thought. At what point in writing the book did you think ‘I know I’ve reached my own conclusions’?

SM: I don’t think there was one point at which I felt like I’d made up my mind about the issues that came up because it didn’t feel to me that there was any one single issue. It’s part of what I found interesting and bewildering about this whole thing. I went to an AutismOne conference in Chicago, and after watching a presentation by Mark and David Geier, I knew I had some real concerns about their approach to treatment. There were some other presentations I saw that I knew from the outset were just factually incorrect, and there were claims about government conspiracies to poison children that I found to be…well, I guess unconvincing is a good word to use.

But I certainly didn’t feel like I knew enough at that point to say whether some of the other treatments that came up had validity, and I didn’t feel like I could say with any confidence whether some of the theories regarding causality had any grounding in fact. There’s a lot of very complicated science involved, so when David Kirby stood in front of an auditorium and talked about mitochondrial disease and genetic susceptibility, I hadn’t done enough research at that time to know whether what he was saying made sense or not.

I did find the all-or-nothing quality to the debate to be disturbing. At AutismOne, it was made very clear to me that I’d be judged in absolutes: If I expressed skepticism about the Geiers, the assumption was that I didn’t think anything else that was being discussed at the conference had any type of validity.

I was open about this when I spoke with people. If I was interviewing someone and the Geiers came up — and I don’t mean to pick on them, but they’re a good example of this because they’re such prominent figures — I’d say that I found their approach to science unconvincing.

I think that there is, among some people at least, a feeling that it’d be better for everyone involved if that with-me-or-against-me attitude wasn’t quite so prevalent. I spoke with Jane Johnson about Andrew Wakefield’s departure from Thoughtful House after the GMC decision was released early last year. I really like Jane — she’s smart and thoughtful and very generous with her time and every time I spoke with her she made me think about things in new ways. And when I asked her why Wakefield had left she didn’t say that it had anything to do with the contents of the GMC ruling, which I really respected: There was not really any new information in the report. Instead, she said that he had become too much of a lightening rod and that Thoughtful House wanted to do more work with Texas medical authorities. I don’t want to misquote her, and these aren’t her words, but she essentially went on to say, This doesn’t all need to be about vaccines. There’s lots of other work to be done here that has nothing to do with vaccines. That’s an attitude I wish more people had.

KL: I know you didn’t set out to write a book about *autism* as such but it seems to attract authors – do you think you’ll always maintain a passing interest in the autism/vaccine issue now?

SM: I think I’ll maintain more than a passing interest in the issue. It’s hard to learn about it – and certainly hard to write about it – without become passionately involved in it, so it’s hard to imagine my not continuing to have some connection to a lot of these issues moving forward.

The Huffington Post: Featuring bad science, facile reasoning since 2005

14 Dec

That’s the title of a new blog post by Seth Mnookin, author of “The Panic Virus“. The title is spot on (and could be the the title of a book in its own right): The Huffington Post: Featuring bad science, facile reasoning since 2005.

Seth Mnookin took a look at unscientific thinking that can lead to dangerous results. Not surprisingly, he found that the anti-vaccine movement and the autism-vaccine discussion in particular made an excellent core for his book. In his first blog piece related to Panic Virus, Mr. Mnookin takes a look at how the Huffington Post reported a recent study on mitochondrial dysfunction and autism. The Huffington Post piece, authored by Mark Hyman, made claims well beyond those supported by the paper itself.

A brief quote by Mr. Mnookin:

If you’re confused as to why The Huffington Post would run Hyman’s piece — well, I have my theories, but suffice it to say that the site arguably features more scientific quackery than any other mainstream media outlet.

Hope and False Hope

25 Nov

Hope. It’s a wonderful thing, and something that parents of children with autism deserve to have in their lives. Fortunately, science shows that there is very good reason for hope. It shows that children with autism continue to learn and develop throughout their lives. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2765385/
http://www.ncbi.nlm.nih.gov/pubmed/15666341

But false hope is another matter. As we saw in my guest blog Truth and Consequences – The Anti-Vaccination Movement Exacts a Price from last year, “biomedical support groups” for autism, so prevalent and so active on the internet, provide a sense of hope and community for parents of children with ASD. But, that hope is not real. The case of “Mary” and her son “Saul” illustrates this – Mary joined a multitude of groups, and tried dozens of “treatments” only to be left poorer. And her child, at age 8, had not “recovered”, but still exhibited many of the challenging behaviors which he had at age 2.

Mary is a bit unusual because she has persisted with “biomedical autism treatments” for 6 years. The typical cycle of membership on such “biomedical support groups” is much shorter. A new parent joins, and attempts to follow the protocol or the advice of the other parents, but if this approach does not help their child, the parent simply abandons the group, usually without comment. However, there are always newly diagnosed children, so one sees a continuous influx of new parent members, asking the “newby” questions. Typically, there is a core of self-proclaimed “go-to” people in the group who have devoted themselves to advising these parents.

The purpose of this blog post is to introduce you to one such “go-to” person, a woman called Dana, a resident of California, and the owner of a website http://www.danasview.net.

Here’s how Dana describes herself:

Hello, my name is Dana and I am 41 years old. I am an attorney, I am married, and I have four children. I homeschool all four of my children, and I do legal work part time from home.
When my second child was diagnosed with autism at age 3, I began searching the internet to learn more about him and who he is, and I was surprised to discover that I also qualified as AS, which I will use here to refer to Autistic Syndrome although I am aware it is used for other uses as well. My third child would probably qualify as PDD, but I have not pursued an official diagnosis for him. My first and fourth child are NT.

Notice that Dana makes it clear that she has no medical background, and she is always careful never to present herself as a medical professional. Nevertheless, she has a lot of credibility on the “autism biomedical support groups”. The reason for this credibility is that she is supposed to have “recovered” her second child, or rather both her second and third children. Here is how she describes her second child in 2001 when he was 5 or 6:

My son’s pedneuro told me that he was very low functioning, never developed at all, classic genetic Kanner’s autism, that my best hope for him would be assisted living in a group home some day. Now my son no longer qualifies as autistic, he will be productive and independent some day, and all of it is because of information I read in books and on the internet. Keep going, you are doing the right thing, as you now know!

Wow! a child who no longer qualifies as autistic! That was pretty impressive in 2001, and it made Dana into an authority on biomedical treatments. However, the story has changed quite a bit over the years:
2003, age 7-1/2

My son was not as old as yours when I started biomedical, altho he was older than most kids I read about. He was age 4 when I started, now is age 7-1/2. When I started biomedical, he basically did not tolerate anything.

He is nearly recovered, his last issue is language delay, all his other issues are gone. Chelation was the intervention that provided the final measure of recovery. I did a few other things along the way, but with chelation he can eat all foods now with no problems, he never has a yeast issue any more, stims only very occasionally and voluntarily stops almost immediately. He is now working on catching up with his language delay.

2006, age 10

My son has a Kanner dx, autistic from birth. In reality, he was injured from my dental amalgams plus HepB vax at birth. I chelated him with ALA, and he is almost biomedically recovered now [chelation being one part of that recovery]. Still developmentally delayed, but catching up.

2008, age 12

Well, when he was 3, the pedneuro told me he would never talk or even acknowledge my existence. Today he is 12 and just completed a first grade program. He talks, he reads, he does simple math, he loves giving me hugs, he calls us “mommy” and “daddy” and says “I love you” and lots of other things. He plays well with his siblings, defends them when we gang up on them to tickle them, is concerned when they get hurt, and he is the only child I have who will do his chores without prompting or complaining.

Because he is so far behind and is already 12, I don’t know if he will be age appropriate. But so far I am pleased with his progress. He has gone from “classic Kanner’s autism, severe, low functioning”, to not qualifying as autistic, but definitely developmentally delayed.

2010, age 14

My son has a dx of “classic Kanner’s autism, severe, low functioning”. The pedneuro who dx him, told me he would never talk or even acknowledge my existence. He said his first word at age 6, after I added digestive enzymes.

The things he needed the most for speech, were enzymes, ALA chelation, anti-virals, B vitamins especially B1 and B12, and anti-fungals. There were several other supps that were also helpful.

Today he is 14 and not yet age-appropriate, but sometimes I do need to tell him to be quiet because he is talking too much.

To me it’s clear that her second son is not actually “recovered” from ASD.

Dana is an amazingly prolific poster. When using the handle “danaatty”, between 2001-2003, she made a total of 9882 posts to just four yahoo groups, abmd, Autism-Mercury, EnzymesandAutism and GFCFKids. In 2003, she adopted the handle “danasview”, and since has made a mind-blowing 48,187 posts to just three groups, with the largest number, 23,705 posts to GFCFKids. That’s an average of 17 posts per day, every day, for 9 years!

Dana blames vaccines for her childrens’ ASD, even though she recognizes that she herself is also on the spectrum. And like most parents who blame autism on vaccines, she has an obsession with eliminating both viruses (presumably the residual measles virus from vaccination) and mercury (from thimerosal containing vaccines). There is absolutely no clinical evidence for any of her recommended protocols. Everything is based on her reputation as a parent who has “recovered” her children.

When viewed in isolation, a single piece of her advice may seem reasonable. However, a small sampling of her posts taken together shows a different story. Here are some symptoms that Dana has blamed on viruses or on viruses leaving the body:

plantar warts
molloscum contagium
yeast, which causes constipation
goopy green eye discharge
major red rash
dry patches of skin
bad case of the “chewies”
visual stims
pushing finger joints and cracking knuckles
OCD
low white blood cell count
loud talking
mouth sores
language difficulty
high fever
sore throat
runny nose
aching bones
fine bumps on chest

In Dana’s view, some symptoms of mercury poisoning are:

dilated pupils
headaches
neck pain
sinusitis
asthma
ear infections
tingling down arms/legs
urinary incontinence
jitters
restlessness
can’t sleep very well
heart palpitations or weird feelings around heart
fungus on feet
pain in jaw
ears popping
pressure in ears
pain in intestines/bowels when exercising
food intolerances
lazy eye

Conventional “autism biomedical” wisdom is that “yeast infections” are common in autism. And that “yeast infections” can result from either anti-viral “protocols” or chelation. According to Dana, some of the symptoms of “yeast” are:

symptoms of Tourette
OCD
anxiety
dark circles under eyes
squinting eyes
needing to chew things
eating plastic and rubber
persistent nail biting
redness/bumps around the mouth
sinus infection
hitting oneself
hitting one’s ears
head banging
making pig noises and snorting a lot
standing on the head
hands always in mouth
severe dandruff
biting a parent
yellow bowel movements
yellow finger nails
pee accidents
tics
crying uncontrollably for 20 minutes or more
cystic acne
constant high pitched vocal stims
non-stop talking
low grade fever
loose sounding cough
ringing in the ears
dizziness
constipation
humming
licking things
hyper and giggling
laughing hysterically
flying into a rage
sleep problems
problems falling asleep
sleep walking
teeth grinding
stinking armpits in a five year old
spinning around in circles
balance issues
chapped lips
extra bad handwriting
visual stims
sexual behavior
red ring around the anus
“spaciness”
anger and aggression,
headache
head banging
sound sensitivity [holding the hands over the ears]
climbing on furniture and jumping off
vestibular sensory issues
and
multiple personalities

It strains credulity that such a diversity of symptoms could possibly be attributed with such precision to only three causes. In fact, there are very few things Dana will NOT attribute to these three causes. For example:

Q: What can cause low white blood cell + low red blood cell count? A hematologist has performed blood tests and ruled out antibodies (lupus, rheumatoid arthritis, etc) and now wants to proceed with a bone marrow biopsy. He appears to think he has ruled out everything else and is now looking for Leukemia or Lymphoma.
Could mercury/metal exposure cause these symptoms? Anything else?

A: It is very possibly a mercury toxicity issue. May also be related to a latent virus issue.
Dana

Dana on viruses:

He had a wart that did not go away with high dose vitamin C [which eliminated a lot of cold/flu viruses in his brain], so I tried lysine, which caused more gains.

I watched a cold virus migrate into my son’s brain once. And after starting
anti-virals, I watched the viruses come out one by one.

The above four supplements (Vitamin A, vitamin C, vitamin D, and lysine) eliminated my son’s viruses, they no longer lie dormant.

Dana on food intolerance:

At my house, controlling yeast and bacteria was required to stop raging. Also, most of the SCD-legal foods my son did not tolerate. He tolerated nothing orange or green, and he did not tolerate fats until mito cocktail. That would have caused major problems for him.

Dana on short stature:

One of my kids had this problem. He needed carnitine and thyroid support.

Dana shows her knowledge of chemistry:

Arginine and lysine are “opposites”, sort of like zinc and copper. If
you suspect a herpes virus issue, definitely do NOT give arginine, it will increase the virus.

Dana on yeast:

The yeast is in his head/brain, not in his GI tract. This happened with my son for a few years. Just because you don’t see signs of yeast in the bm/GI tract, does not mean yeast is not present in other areas of the body.

With her prolific posts and her continuous flow of “biomedical autism treatment” advice for parents, Dana has established herself as a guru. She is one of the key people personally responsible for encouraging parents to subject their children to unproven and potentially dangerous experimentation. According to the Office of Dietary Supplements, consumers in the USA spent $20.3 billion on dietary supplements in 2004. Someone is getting rich on her advice.

Addendum:
In researching this story, I encountered something astonishing. Remember “Mary” and her son “Saul”? Saul is very clearly NOT recovered despite all the experimentation performed on him. The ultimate irony was to see “Saul” featured on Dana’s website, touted as an example of a chelation recovery!

Is the end of the Omnibus Autism Proceeding near?

2 Oct

The Omnibus Autism Proceeding (OAP or omnibus) is the way the Court of Federal Claims (vaccine court) has been handling the now 5,000+ claims submitted for autism as a vaccine injury. The Omnibus started officially in July of 2002 with Autism General Order #1. Along the way it was decided that the best way to handle the large number of claims was using “test cases”. Three test cases were heard for each of two “causation theories”. The idea was that “general causation” arguments could be made once, and very thoroughly, and the other cases could be decided on the outcome.

The first causation theory was that the MMR vaccine in combination with thimerosal could result in autism. The test cases for this theory were those of Michelle Cedillo, William Yates Hazelhurst and Colten Snyder. Attorneys for the families presented evidence for a mechanism where thimerosal was proposed to reduce the immune response and the MMR vaccine led to a persistent measles infection which, again as proposed, led to symptoms of autism. In all three cases the special masters (judges) ruled against the petitioner families. They found that the evidence did not support the mechanism proposed.

The second causation theory held that thimerosal in vaccines could result in autism. Three test cases were presented, again with individual and general causation evidence. The test cases, Jordan King and William Meade, and Colin Dwyer were heard. Their attorneys argued that mercury from the thimerosal in the vaccines accumulated in the brains and resulted in neuroinflammation which, in turn, resulted in autism. As with the MMR case, the special masters ruled against the petitioner families.

To put it simply: all the data and all the experts that could be put together to support the idea that vaccines cause autism weren’t persuasive. They came up with two stories (MMR and thimerosal) and neither story made a case that was even close (the special master’s word).

Some of the petioners appealed. Some appealed to multiple levels. The appeals were denied.

The Court recently issued an update letter. I quote part of it below:

As described above in part I of this Update, all of the court rulings in the six test cases described above have found no causal link between autism and MMR vaccines and/or thimerosal containing vaccines. Further, the PSC has informed the special masters that no additional OAP test cases are contemplated.

Therefore, the Office of Special Masters has begun discussions with members of the petitioners’ bar and respondent’s counsel about how best to conclude the approximately 4,700 autism cases remaining open on the court’s docket. To aid in that process, some petitioners’ counsel have contacted all of their OAP clients to advise them of the results in the test cases and to recommend a course of action with regard to their claims. Additionally, all petitioners who are not represented by counsel have been ordered to inform the court either that they wish to dismiss their claim or that they intend to proceed with their case. For petitioners who wish to continue with their claim, orders to identify a theory of causation, produce an expert report, and file additional evidence will follow. Petitioners’ counsel who have not yet done so are encouraged to contact their clients and determine how their clients wish to proceed.

The issue of attorneys’ fees and costs for petitioners’ counsel is part of the discussion about how to conclude proceedings on the OAP petitions. Mediation efforts are underway to develop methods to resolve the fees and costs issues, and a report on the progress in these talks is expected at the October judicial conference.

The special masters are assuming that no one will go forward with the MMR and thimerosal theories. Since those theories don’t hold up in court, it seems a good assumption.

Petitioners can still go forward as individual cases, as in any non-omnibus case. They will need to submit records and a theory of causation and support that theory in hearing.

The PSC (petitioner’s steering committee, a group of lawyers which has managed the Omnibus from petitioner’s side) has decided that no additional OAP (Omnibus) test cases are planned.

This is very important. They have no other theories to present. They don’t plan to present “too many too soon”. They don’t plan to present a Wakefield-like theory of persistent measles infections leading to “leaky guts”. They don’t plan to present a “mitochondrial autism” theory.

This last bit is very important. The Hannah Poling case made a lot of news when it was leaked that the government had conceded her case as a table-injury MMR encephalopathy. She was supposed to be one of the three thimerosal test cases. At the time of the concession and since, it was asserted that her case was “not rare” and that the attorneys were prepared to go ahead with the mitochondrial disorder story. It would appear that there are not many (if any) other “Hannah Poling” cases out there. There is at least one family pursuing a variation of the mitochondrial disorder theory. Alexander Krakow was scheduled to be a test case for the thimerosal theory and his family pulled out of the Omnibus to pursue the mitochondrial theory.

While there may be a case or two that we hear about from here on out, it appears that the Omnibus, the “class action” type phase, is over.

Sharyl Attkisson blogs the Hannah Poling settlement

10 Sep

I had forgotten Sharyl Attkisson. She is a reporter for CBS news who has covered vaccines in the past, but has been silent on the issue for the past year or more.

Her recent piece shows exactly the sort of reporting that frustrated me in the past: Family to Receive $1.5M in First-Ever Vaccine-Autism Court Award

In that piece she links to her piece from 2008 on the Hannah Poling case: Vaccine Case: An Exception Or A Precedent?

Here’s a quote from that earlier piece:

While the Poling case is the first of its kind to become public, a CBS News investigation uncovered at least nine other cases as far back as 1990, where records show the court ordered the government compensated families whose children developed autism or autistic-like symptoms in children including toddlers who had been called “very smart” and “impressed” doctors with their “intelligence and curiosity” … until their vaccinations.

They were children just like Hannah Poling.

What’s still being debated is whether the Poling case is an exception … or a precedent.

So, which is it? Were there children “just like Hannah Poling” or is this the “First-Ever Vaccine-Autism Court Award”?

Actually, it is neither. This isn’t the first vaccine court award involving autism, and the other cases are not “just like Hannah Poling”.

For real information on the other nine cases, read Kathleen Seidel’s piece on Neurodiversity.com. Few, professional or amateur, can compare the the thoroughness of Kathleen Seidel. For example, one case (the first I read involving autism from the vaccine court) is Suel v. HHS. Young David Suel had tuberous sclerosis, a condition known to be associated with autism and epilepsy. Epilepsy occurs in about 60 to 90% of individuals with TS. Autism occurs in about 25-50%. David Suel’s case was declared to be a “table injury” wherein the seizures began within a set period after his DPT vaccination. What is notable about that is the table for DPT was later changed–when it was shown that DPT was not responsible for inducing seizure disorders. In other words, had David Suel been vaccinated, or just filed, after the change in the table, he likely would not have been awarded damages.

“They were children just like Hannah Poling”? Is tuberous sclerosis just like mitochondrial disease? (answer: not even close).

Shall we go on? In her recent piece, Ms. Attkisson states:

In 2002, Hannah’s parents filed an autism claim in federal vaccine court. Five years later, the government settled the case before trial and had it sealed

Not accurate. The court did not “settle” the case in 2007. They conceded the case, and they were in the process of completing the settlement when someone leaked the information to the press. The government did not “seal” the case–it is standard procedure to keep this information confidential until the settlement is completed.

But that doesn’t make a good story, does it?

Ms. Attkisson goes on:

In acknowledging Hannah’s injuries, the government said vaccines aggravated an unknown mitochondrial disorder Hannah had which didn’t “cause” her autism, but “resulted” in it. It’s unknown how many other children have similar undiagnosed mitochondrial disorder. All other autism “test cases” have been defeated at trial. Approximately 4,800 are awaiting disposition in federal vaccine court.

Mito-autism was a big thing for a while there. David Kirby took the story and ran with it–making a lot of mistakes along the way and propagating a lot of misinformation. It is unknown how many other children have similar disorders–but the researchers who studied cases like Hannah Poling have stated that cases such as hers are “rare”.

“All other autism “test cases” have been defeated at trial”.

What is conspicuous about the other “test cases” is that in none of them was it argued that the children were like Hannah Poling–i.e. the attorneys did not argue that a mechanism of autism through mitochondrial dysfunction aggravated by vaccines existed. In fact, one child named as a test case was pulled from that slot in order to argue that mitochondrial based case. The expert report filed for that child (since pulled from the Omnibus website) did not argue mitochondrial disorder or dysfunction at that time. In other words, the idea of a mitochondrial disorder being linked to autism was so alien from the cases being made by the attorneys for the families in the Omnibus that this child had to argue the case separately.

It is often pointed out that many autistics may have mitochondrial dysfunction. This is based largely on studies out of Portugal. It is left implied, and it is often believed that mitochondrial dysfunction means vaccine injury in these cases. This was the impression that David Kirby put forth and it was clearly wrong. First, mitochondrial disorders are a very broad spectrum. The type that Hannah Poling has is not the same as those detected in most autistics. Second, most reports of mitochondrial disorders and autism, including the Portugal studies, do not involve regression. Third, even amongst those children reported by the groups that identified Hannah Poling, regression was often idiopathic or followed fever clearly independent of vaccination.

I do not expect Ms. Attkisson to present the following (quality) information, so I will repeat it here:

Here are the answers to some questions posted to mitochondrial medicine experts and their answers:

When asked, to respond to the position: ‘‘I view the risk of vaccination in known metabolic disease patients to generally be outweighed by the risk of the infectious diseases being vaccinated against”

63.2% strongly agreed
31.1% agreed
0.9% disagreed
and 0.9% strongly disagreed.

Asked about the opinion that the risk of vaccination in metabolic disease was ‘‘greater than the risk of the infectious diseases being vaccinated against”

52.9% strongly disagreed
40% disagreed
3.5% agreed
and none strongly agreed

Damages awarded in the Poling case?

3 Sep

A document has recently been posted the Court of Federal Claims website, describing an award in a vaccine injury case. The document is redacted, but the following paragraph indicates to me that this involves the case of Hannah Poling:

Respondent has conceded that petitioners are entitled to compensation due to the significant aggravation of Child’s pre-existing mitochondrial disorder based on an MMR vaccine Table presumptive injury of encephalopathy, which eventually manifested as a chronic encephalopathy with features of autism spectrum disorder and a complex partial seizure disorder as a sequela.

The amount involves 4 parts: (1) a payment of about US$1.5M for life care, future earnings and pain-and-suffering, (2) a lump sum payment of about US$140,000 for past unreimbursable expenses, (3) a lump sum payment of about $7,800 to cover a medicaid lien and (4) an undisclosed amount to purchase an annuity to cover items in the life care plan.

The award amount seems larger than typical to me. I don’t put this out as a criticism. Rather the opposite. If we as a people are going to compensate those injured by vaccines, as we should, we should compensate highly. We can not fully compensate a person or a family for injury. For example, the cap on pain and suffering damages has not been increased in the roughly 25 years that the vaccine program has been in place.

It is not easy to write this piece, and I hesitate to publish it. Assuming this document refers to the Poling family, they chose to redact information.

I will end with this statement from the Special Master who wrote the decision:

Based on the persuasive factors supporting petitioner’s vaccine claim and respondent’s election not to challenge petitioner’s claim, the undersigned finds that petitioner is entitled to compensation under the Vaccine Program. Accordingly, a determination of damages is appropriate.

AutismOne Generation Rescue conference expells registered attendees

2 Jun

Autism News Beat has this story in full in Listening to parents at AutismOne. AutismOne is a parent convention with a major focus on alternative medicine. To put them in perspective, Jenny McCarthy is a frequent keynote speaker and Andrew Wakefield was honored by AutismOne last year after it was revealed that his study was possibly tainted by misreporting of results.

If you recall, AutismNewsBeat was expelled from a previous AutismOne conference. He had just asked, respectfully, an important question of Hannah Poling’s mother (Hannah Poling is the child whose case before the vaccine court was conceded on the basis of vaccines aggravating an underlying mitochondrial disorder). To my knowledge, AutismNewsBeat has no been given a clear reason for the expulsion.

A filmmaker/Journalist was present at this year’s AutismOne. Lars Ullberg had applied for press credentials and was denied. AutismOne responded to this request stating:

Autism One is not prepared to offer press passes to you or your crew. Although you and each of your crew members may pay the registration fee as regular attendees, subject to the usual terms of attendance, neither you nor your crew members are permitted to conduct any videography, photography, audio recording, or press interviews; furthermore neither you nor your crew members are permitted to quote attendees, presenters, exhibitors, volunteers, or staff in any manner that will be quoted, “on the record,” or used for public or private media or instructional purposes. Additionally, you and your crew members must identify yourselves accurately with your affiliations to those to whom you speak and also not mislead them to think that you are simply seeking information with which to help your child. Finally, you may not eavesdrop on private conversations between attendees. In summary, Autism One grants no permission to you or your crew to report on this conference or its attendees. Should we become aware that you are not following these guidelines, we will not hesitate to ask you to leave the conference.

AutismNewsBeat asked AutismOne for details on why Mr. Ullberg was removed from the conference, but he has yet to receive a response.

I find the wording and possible intent of this sentence rather odd: ” Autism One grants no permission to you or your crew to report on this conference or its attendees”. If an attendee chose to be interviewed, would that not be OK? The conference appears to be speaking for its attendees.

In addition, a public health official was in attendance for this year’s AutismOne conference. This person also was asked to leave. According to AutismNewsBeat:

A staff member of a western state department of public health was reportedly attending a session on vaccines and parental rights. According to one source, the speaker was advising parents how to apply for and receive vaccine exemptions. The session was interrupted by an AutismOne organizer who commandeered a microphone to announce that a state health department staff member was present, so parents should be careful about what was discussed.

A short time later four Westin O’Hare security guards entered the room, identified the staffer, and directed her to leave the conference facility.

Perhaps in the case of the journalist, AutismOne was afraid of bad press. But haven’t parent groups been asking for some time for people to listen to them? A public health official attends the conference in order to listen and is expelled.

Generation Rescue and Autism One appear to be working in a very defensive, entrenched mode. Internet chatter is mentioning closed sessions where Andrew Wakefield spoke. Closed sessions? Expelling journalists? Refusing permission for journalists to report on what attendees have to say–even if the journalist clearly identifies himself? Asking public health officials to leave for no apparent reason? Again, this comes across to me as an entrenched, defensive mindset.