The Peril of Parent Testimony – Stem Cell Treatment for Autism

15 Dec

It usually begins naively enough – the parent of a newly-diagnosed child launches a search into the Wild, Wild West of the World Wide Web, searching for help and hope for a diagnosis they are still struggling to grasp.

Soon parents may find themselves on internet support forums and in email groups, surrounded by parents promoting everything from the plausibly helpful to the fantastically impossible.

Some parents may become part of a new peer group – an online pack of believers, where pack status is determined by the number of experimental treatments employed and the claims made regarding these treatments. Alpha pack status is achieved when a parent claims to have “recovered” or “almost recovered” their child, often by applying an arbitrary definition of “recovered,” or even an extrapolated percentage of recovery. Every developmental tick is attributed to the most recent treatment addition, adverse reactions are attributed to healing, and anyone questioning the pack interpretation is considered an intruder in the anthill.

The appeal of these claims is obvious. The truth, however, may be another matter. With autism, there are always newcomers to the ranks of the recently-diagnosed, whose parents are unfamiliar with the histories of popularized treatments, fantastic claims, and failed treatment prophecies.

Eventually, even well-meaning parents may be sucked into the vortex of upping the treatment ante and believing their own fantastic claims, and may remember history differently in order to rationalize and justify the invasive and risky treatments their children are forced to endure. The pursuit of treatment itself becomes a drug — impairing objectivity, dulling recollection, and often, even obscuring the truth.

And so it goes with the Faiella family. Daniel and Ruth frequently thrust their son, Matthew, now 10, into the media to promote hyperbaric and stem-cell treatment for autism, and they have done so yet again, in Local Father Says Controversial Treatments For Autism Work. Matthew has previously endured four stem cell transplants, the fourth not only involving lumbar puncture, according to Daniel Faiella’s blog, but also a frightening experience with anesthesia in a developing central American country.

Unfortunately, Mr. Faiella later removed his harrowing account of anesthesia and the stem cell lumbar puncture from his blog, and though left an entry stating that he still “believes” in the clinic, along with plenty of graphic pictures of his son undergoing this procedure. The search results for his original post concerning Matthew’s dangerous experience are all that now remain:

Aug 10, 2010 … I would never do a spinal stem cell injection again! I can’t just write the good without writing the obstacle that we went through! …
recoveringmatthew.blogspot.com/…/i-would-never-do-spinal-stem-cell.html
Aug 10, 2010 … We also believe Matthew got way too much anesthesia! Thankfully, we were able to get these behaviors to go away by doing many hours of deep …
recoveringmatthew.blogspot.com/…/i-would-never-do-spinal-stem-cell.html

Mr. Faiella has also self-published a book, Out of the Darkness: The Faiella Family’s Journey to Recover their Autistic Son, encompassing a number of alternative and questionable treatments. According to the Amazon page where it is sold, the book appears to be endorsed by JB Handley, of Generation Rescue and Age of Autism, as well as a number of individuals in the DAN treatment community. Recognition and notoriety – the mirage of a maverick hero “rescuing” a child — seems to glorify and goad along risky experimentation on children with autism.

The current news article depicting the Faiella family’s upcoming stem cell journey to Panama includes many elements typical of such accounts, such as the dreaded institutional prognosis rendered by the diagnostician. This has been a recurring theme in the Faiella treatment testimony, as has the impression that Matthew only recently acquired particular skills that are then attributed to the current treatments. As in a media article published when Matthew was seven:

“Faiella recently gained the ability to use words and loves to share his passion for drawing pictures.

Matthew’s dad said his son was diagnosed with autism at 18 months, and doctors warned he eventually would need to be institutionalized.

“They gave us really no hope,” Daniel Faiella said. “We broke down and cried, but I looked at the doctor and said, ‘Not my son. Not on my watch. I’m going to do whatever I can.'”

And another — Matthew is turning nine years old:

Published : Monday, 02 Nov 2009, 8:00 PM EST
WILLIAMSVILLE, N.Y. (WIVB) – Like most eight-year-old boys, Matthew Faiella of Williamsville loves playing with his action figures. Unlike most boys his age, he has an incredible talent for sketching, and can also speak Spanish.
It’s hard to imagine, just two years ago, Matthew, who lives with autism, couldn’t even string two words together.
“It was very sad to see, he was in his own little world. Couldn’t speak. Couldn’t communicate,” said Daniel Faiella, Matthew’s father.

The dramatic statements made in media opportunities regarding Matthew’s diagnostic baseline, (institutional) prognosis, and progress have changed significantly from the original parent testimony posted in public internet locations five years ago. According to Matthew’s mother, “momtoMatthew,” the diagnostic baselines and prognoses were quite different then:

When Matthew was four years old, his mother wrote:

“Matthew was diagnosed at age 20 months to have PDD/NOS. This neurologist just doesn’t seem to agree with that diagnosis at all. He says Matthew is just too different to be given that diagnosis. His is very loving, able to learn easily, is learning to read, can write beautifully, and has a great memory to the point of possible photographic memory.”

Several months later (Dec 2005), momtoMatthew explains that:

“Matthew was diagnosed as language delay at 18 months, then that diagnosis was changed to PDD-NOS at 22 months. He had the PDD/NOS label until just a short few weeks ago. […] In the end they told us that NO he is not on the spectrum. However, he does have a SEVERE receptive/expressive language disorder. […] They told me that with TONS of speech therapy he could get to be so typical that no one would know he had ever had a disorder at all.”

Matthew is likely now diagnosed accurately as on the spectrum, as his parents do report. Interestingly, this is apparent in the very youtube video ICM (apparently the stem cell clinic) posted to advertise the treatment. The Faiellas now depict Matthew as “85% recovered” on a charitable site soliciting donations for his additional stem cell transplants. The meaning of “85% recovered” remains unclear, as does the remaining 15% of autism to be eradicated with a 5th stem cell treatment.

Matthew is a charming young man and has made wonderful progress over time. This would understandably pique the interest of a “new” set of parental eyes unfamiliar with the history, especially since his progress is now being attributed largely to hbot and stem cell transplants. However, according to past parent testimony, Matthew has been communicating, speaking in sentences, answering questions, following 3 to 4-step directions, reading, spelling, writing, and drawing long before his hyperbaric oxygen and stem cell treatments:

Dec 2005: Having just turned five years old, Matthew can indeed communicate in sentences, and on this occasion, language progress is attributed to supplements:

“After giving him his supplements, I would say within 15 to 20 minutes he was much calmer and happily playing with some toys. He came over to me a few minutes later and said “excuse me mommy, I want to watch the dog movie.”

Matthew was spelling and reading words at age 3 or 4, and mom states that his handwriting was advanced for his age of 6 at this time:

Despite the parents’ claims that Matthew’s developmental gains are more recent and due to stem cell treatments and hbot, Matthew had made significant progress by the time he was 5, according to mom:

“My ds has come a long way since he was first dx’d. At that time he was completely non-verbal, he could not follow any sort of direction, he would spend at least a quarter of the day spinning in circles or hand flapping (or both).
Today he is a little chatterbox, can follow directions fairly well..even 3 and 4 step directions, he no longer spins or flaps, and his receptive language is much better.”

And also as a five-year-old, mom reports that Matthew was initiating conversation, answering questions, and speaking in sentences:

It is curious that Matthew’s parents later edited and deleted the seemingly contradictory content of these past public posts, following the publication of their book and numerous media articles (checked using an address captured in the screenshots). Perhaps this is most unfortunate for the parents themselves — these at least served as markers along the path that Matthew actually traveled, in case they ever wish to find their way back.

When parent testimonies take on a life of their own, the well-meaning parents responsible may have lost their way, lost their boundaries, and even lost their recollection of the child that actually was – a happy, healthy boy who has been learning, loving, and making progress all along.

Internet testimonies and fantastic treatment claims: approach with caution.

Book Sales: The Age of Autism and Callous Disregard

15 Dec

I tapped my source one last time for book sales figures for “The Age of Autism” and “Callous Disregard”. The Age of Autism was written by Mark Blaxill (board member of SafeMinds and one of the three principle editors of the blog, Age of Autism) and Dan Olmsted (former UPI editor, principle editor and, from what I can tell, owner of the Age of Autism blog). Callous Disregard is Andrew Wakefield’s account of the events which landed him before the General Medical Council and resulted in him being removed from the UK medical register.

Total book sales to date:

Age of Autism: 2301
Callous Disregard: 2925

Last week five copies of Callous Disregard were sold.

Last week The Age of Autism sold 130 copies–38 in Minneapolis St. Paul and 35 in Norfolk, Virginia. This appears to coincide with book signing events in those locations. The week before that, The Age of Autism sold 57 copies.

These figures must be disappointing. If not to the authors, to the publishers.

I may post an update with this week’s book sales. Either way, there isn’t much reason to continue the discussion of these books. When they are available in the remainder book outlets (with this few sales, there won’t be a lot of used copies and little chance for paperback editions) I will likely obtain copies of each. I’ve already read them, but they are interesting from a historical perspective. It will be a good exercise to see how these books read ten years from now. If history is kind to these authors, it will be by neglecting them.

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.

Mitochondrial Dysfunction and autism. Brief Q and A with lead author

13 Dec

Mitochondrial Dysfunction was thrust back into the news again earlier this month when a team from UC Davis led by Professor Cecilia Giulivi discovered:

In this exploratory study, children with autism were more likely to have mitochondrial dysfunction, mtDNA overreplication, and mtDNA deletions than typically developing children

In itself this is a fascinating development and the first true look at whether autistic children were more likely or not to have mtDNA dysfunction(s).

However, as ever in the world of autism, the world of the anti-vaccinationists are never far behind. This passage from Harold Doherty demonstrates this bizarre need to always conflate the two:

The Poling family was successful in advancing a vaccine injury claim on behalf of their daughter Hannah Poling to the point of settlement by US authorities. Hannah’s father is Dr. Jon Poling, a practicing neurologist in Athens, Georgia, and clinical assistant professor at the Medical College of Georgia. He reviewed his daughter’s case in the Atlanta Journal-Constitution on April 11, 2008. In his comments Dr. Poling explained how mitchondrial dysfunction was related to his daughter’s case and to the existence of a possible mitochondrial dysfunction subgroup of autism disorder. He also discussed, as a medical doctor who expressly recognized the importance of vaccines in preventing serious diseases, the need for public health authorities to abandon fear tactics and conduct research to restore confidence in public health authorities and vaccines

In order to try and staunch the upcoming flood of misunderstandings and false statements like those implied by Doherty (and John Poling whom other mtDNA specialists such as John Shoffner clearly don’t trust on the issue), I contacted Professor Giulivi and asked her three simple questions about the study she is lead author of. She supplied three simple answers.

KL: Do you think, based on available science (including your paper) that vaccines cause autism?

CG: We do not have any evidence for this in our study. Our study was cross-sectional not longitudinal so it cannot point to any cause (not just vaccines), meaning we do not have anydata supporting one way or another.

KL: If so, why is this? Does it follow (in your opinion) that mitochondrial dysfunction can be triggered by a vaccine?

CG: Again, please see (1).

KL: Do you believe your own paper adds weight to any opinion regarding autism causation by any means?

CG: No. At this point we do not know if it is mainly genetic, environmental or a combination of both. Again, with a cross-sectional study you get a snapshot of the situation but not how you got to that situation.

There you have it. The lead author of the study everyone is raving about is very carefully pointing out that the study in question does not add weight to _any_ hypothesis of autism causation, let alone vaccines.

Health inequity in children and youth with chronic health conditions.

10 Dec

A recent paper in the Journal Pediatrics looks at differences in prevalence, incidence, survival and other disparities for children with chronic health conditions. These conditions include autism along with acute leukemia, asthma, attention-deficit/hyperactivity disorder (ADHD), cerebral palsy, cystic fibrosis, diabetes mellitus, Down syndrome, HIV/AIDS, major congenital heart defects, major depressive disorder, sickle cell anemia, spina bifida, and traumatic brain injury.

Health inequity in children and youth with chronic health conditions.

Berry JG, Bloom S, Foley S, Palfrey JS.

Complex Care Service, Program for Patient Safety and Quality, Children’s Hospital Boston, Fegan 10, 300 Longwood Ave, Boston, MA 02115, USA. jay.berry@childrens.harvard.edu
Abstract

BACKGROUND: Over the last decades, there have been great advances in health care delivered to children with chronic conditions, but not all children have benefitted equally from them.

OBJECTIVES: To describe health inequities experienced by children with chronic health conditions.

METHODS: We performed a literature review of English-language studies identified from the Medline, Centers for Disease Control and Prevention, National Cancer Institute, and Cystic Fibrosis Foundation Web sites that were published between January 1985 and May 2009, included children aged 0 to 18 years, and contained the key words “incidence,” “prevalence,” “survival,” “mortality,” or “disparity” in the title or abstract for the following health conditions: acute leukemia, asthma, attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorders, cerebral palsy, cystic fibrosis, diabetes mellitus, Down syndrome, HIV/AIDS, major congenital heart defects, major depressive disorder, sickle cell anemia, spina bifida, and traumatic brain injury.

RESULTS: Black children had higher rates of cerebral palsy and HIV/AIDS, were less likely to be diagnosed with ADHD, had more emergency department visits, hospitalizations, and had higher mortality rates associated with asthma; and survived less often with Down syndrome, type 1 diabetes, and traumatic brain injury when compared with white children. Hispanic children had higher rates of spina bifida from Mexico-born mothers, had higher rates of HIV/AIDS and depression, were less likely to be diagnosed with ADHD, had poorer glycemic control with type 1 diabetes, and survived less often with acute leukemia compared with white children.

CONCLUSIONS: Serious racial and ethnic health and health care inequities persist for children with chronic health conditions.

Autism is not unique in that there are racial and ethnic disparities involved. It is clear that many of the disparities involving autism are artificial. For example, there almost certainly aren’t large differences between races and ethnic groups in terms of the fraction of autistic people. And, yet, there are big differences in the number of people identified as autistic.

One focus of the IACC is to direct more research into better identification within the diverse groups in the US, as well as seeing what differences may really exist withing these groups. Here is one short term goal in the Plan:

Enhance existing case-control studies to enroll racially and ethnically diverse populations affected by ASD by 2011. IACC Recommended Budget: $3,300,000 over 5 years.

I am of the opinion that we could use a lot more money applied to exploring autism in diverse populations.

Challenging untested and unsafe autism therapies: the “anti-cure” defense

10 Dec

A recent post here on LeftBrainRightBrain discusses a new alternative therapy for autism: fecal transplants. Yes, you read that correctly, fecal transplants. The concept is simple, if poorly thought out: assume that autism is related to the “gut-brain” connection. If a child’s intestines have the wrong bacteria, why not replace them with bacteria from a non-autistic individual? The procedures involved take a couple of paths. One can collect “healthy” fecal matter, store it in a bucket for a week and then, using a cake-decorating funnel, transplant the fecal matter to the autistic child. Alternatively, one can obtain a naso-gastro tube from a veterinary supply house and transplant the fecal matter through that route.

In case you are wondering: (A) I did not make that up and (B) I am certainly not recommending anyone do this.

In my experience, most times when someone is critical of a “therapy”, you can count on a number of set responses. Number one automatic response is usually, “you are anti-cure”.

It’s a dodge. A diversion. A way to avoid the very serious question of safety.

Safety is a very important discuss that should be led by the biomed community. Unfortunately many of their most vocal proponents avoid the discussion. Labeling people “anti-cure” is a short and effective. It’s easy. It is not a way to live up to the responsibility that the leaders of the biomed community have to themselves, other parents and, most importantly, the autistic children involved.

Take fecal-transplants. It isn’t an autism cure. The risks of illness by “transplanting” feces into the stomach or intestines of a child should be obvious to all. Kev has expressed outrage at this practice. That isn’t anti-cure.

It really is well past time for the biomed leadership to actually lead. It is very rare that any theory, any “treatment” gets a critical review by them.

It is time for them to stop hiding behind the false-shield of the word “cure”.

Thank you, SafeMinds, for pulling the attack on Skepchick

10 Dec

First some background. Recently, a blogger (at Skepchick.org) started a campaign to inform movie theaters about the advertisements that SafeMinds was placing on their screens. The theaters decided to pull the advertisements. In response, SafeMinds, through their media outlet Age Of Autism and the AoA facebook page, launched a petty attack on Skepchick. The attack went beyond typical cyber bullying, with at least one comment that went beyond the pale. After many hours and much pressure, SafeMinds and Age of Autism edited many of the comments. They have now pulled the discussion entirely from their facebook page. An apology would certainly be in order, and I would appreciate it that if anyone knows of such an apology that they let us know here.

Even in absence of an apology, I would like to thank SafeMinds and Age of Autism for pulling the discussion. It only served to embarrass the autism communities.

Unfortunately, there is more fallout from the harsh response that SafeMinds and Age of Autism brought in response to the theaters’ decision to pull the advertisements. Liz Ditz at I Speak of Dreams reports that the theaters are now refusing actual public service announcements involving flu vaccines.

Bring the crazy – Fecal Transplant

9 Dec

There’s a few places around the interweb that you can always count on for a good old dose of craziness. One of those is the Autism Web forums, where the latest trend being discussed is Fecal Transplant.

Yeah. Fecal Transplant.

It is actually a known therapy to attempt to cure

…pseudomembranous colitis (caused by Clostridium difficile), or ulcerative colitis which involves restoration of colon homeostasis by reintroducing normal bacterial flora from stool obtained from a healthy donor.

Feeling a bit icky yet?

But like so many known treatments for known ailments (chelation for example), the extreme biomed party like to put their own unique twist on things:

Ok, you guys, I got some info for you, please do not hate me 🙂
Here is how this procedure was done by that physician in canada who does not practice anymore.
you collect the stool from a healthy relative (mother, father , so on) for a week in a bucket, no preservatives or cooling. Then mix well, fill in a decorating cone (that cloth cone you use to decorate a cake).
Use the cone as an enema to empty all the content in the patient’s colon. The patient needs to hold that as long as possible.

Does that in theory mean no more GFCG diets, yeast treatments, mega supplements if it works right? Is there the potential for this to actually reverse autism, then? With the autism/gut connection it sure makes sense. I’ll admit I didn’t read this post initially because it sounded so gross, but now that I’ve started to look into it…..it may really work.

Hooray!!! Playing ‘doctor’ via the internet and subjecting your kids to it!! Just wonderful.

Autism Science Foundation’s Recipe4Hope campaign

9 Dec

The Autism Science Foundation is a charity which focuses on funding autism research. They have a very clear mission statement:

The Autism Science Foundation’s mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing, and disseminating autism research. The foundation also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. Read about our achievements in 2010 on our Ingredients page.

Our organization adheres to rigorous scientific standards and values. We believe that outstanding research is the greatest gift we can offer our families. Every research dollar needs to count toward that goal, and we make sure that it does.

The Autism Science Foundation is a nonprofit corporation organized for charitable and educational purposes and exempt from taxation under Section 501(c)(3) of the IRS code. All donations are tax deductable to the full extent allowed by law.

Learn more about our foundation at http://www.autismsciencefoundation.org.

One focus of the ASF has been to fund graduate level researchers. I find this an especially good goal in that in addition to promoting research, this brings more people into the autism research community.

The Recipe4Hope campaign will raise money for autism research. According to the ASF: “Every dollar donated by December 31 through this special year-end campaign will go directly to autism research.”

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The 2011 Current Trends in Autism Conference

8 Dec

I just got my second announcement for this conference in my email. The 2011 Current Trends in Autism Conference will be held in April of 2011. The conference is being organized by LADDERS. LADDERS is an effort by the Nancy Lurie Marks Family Foundation. So far there aren’t many details on the conference, but given the scope of the Foundation and of Ladders, I have hope that this will be a good, quality conference.

The Nancy Lurie Marks Foundation established an effort at Massachusetts General Hospital to focus on the needs of autistic adults, with a $29M grant.

Here is the announcement:

The 2011 Current Trends in Autism Conference will take place April 29-30, 2011, at Crowne Plaza Boston – Natick Hotel.

We will present the most up to date, scientifically sound information in the field of Autism and Pervasive Developmental Disorders to parents and professionals concerned about children, adolescences and adults whose diagnosis falls along the Autism Spectrum.

Neurobiological and clinical research, as well as strategies for interventions have advanced dramatically over the past several years and our distinguished faculty will report on what is now known, how what we know can be applied to the education and care of those with Autism, and what direction future research needs to take in order to advance our knowledge and understanding of this disorder.

All proceeds from the conference are used to finance new and ongoing neurobiologic research and to support ongoing evaluation and treatment services and the development of new interventional programs.

More details to come.

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