Too Many Masters of Illusions...

"The greatest obstacle to discovery is not ignorance -- it is the illusion of knowledge." ~ Daniel Boorstin

Thanks to the misrepresentation of facts and out of control spinning by many out there, most have not a clue about Hannah Poling's disease, its origins, and its significance. I have tried to explain it, to the best of my knowledge, having read multiple studies, having friends whose children have mitochondrial disease, and even having gone through the process of mito evaluation for my child, with Dr. Shoffner. Many bloggers have written on this, some have also written articles for various new organizations. The authors include other parents, both fathers and mothers ,(one of those moms also happens to have her PhD.), along with neurologists, scientists, and other physicians.

Despite that, people are opting to look past the facts and embrace half-truths and all-out lies. They prefer the sensationalist value of conspiracy theories and blaming the government for "injuring" our children. There are far too many masters of illusions weaving webs and indoctrinating parents into their beliefs, all for their own fame and fortune. To say that it's now been proven that vaccines cause autism (or mitochondrial disease), is beyond ignorant. Who cares if I don't have a clue about what disease Hannah Poling has? What difference does it make if she was born with this condition? I still blame the government!

The realization that Hannah Poling has a disease, one that was not caused by vaccines, and one that doesn't change anything for your own child or court case might be very upsetting to you. I get it. You were exhilarated by the Poling case (especially by those that hyped it to no end), feeling you too would be awarded money for your child's autism. Then you come to find out that Hannah, is in fact, not like your child--how disappointing for your case. I understand that. I realize it may feel better to hang onto something you have believed for so long--even when there is no solid proof or evidence to support those views. To think in new terms, acknowledge that all you had come to believe was all wrong, can be very difficult. But please, I urge you, look at the facts. Look at what the real science shows and proves, with regard to Hannah's condition. See what the real scientists, not a journalist, a lawyer, or other spin "doctors" are saying.

READ THIS, from Scientific American author Nikhil Swaminathan on what Dr. John Shoffner (a mitochondrial disease expert) has to say:

He notes that the route from the vaccine to the child's autism was by no means direct. Hannah's mitochondria were already underperforming, so when she developed a fever from her vaccine, the increased energy requirements likely pushed them past their thresholds. A fever caused by an ear infection or the flu would likely have triggered the autism symptoms if they occurred before or between the ages of 24 and 36 months, he says, which is when classic, regressive autism, which affects one third of sufferers, usually appears.

Shoffner notes that parents and advocates looking to impugn vaccines as triggers for autism—or mitochondrial disease—need direct, not just circumstantial, evidence. "If you were sitting in a waiting room full of people and one person suddenly fell ill or died or something," he says, "would you arrest the person sitting right next to them?"

Jon Poling, says Shoffner, has been "muddying the waters" with some of his comments. "There is no precedent for that type of thinking and no data for that type of thinking," Shoffner says.

So, now you know what a mito expert has to say. Not just any mito expert, but THE one who was involved in a study with Dr. Poling, and MOST significantly, the ONE who diagnosed Hannah Poling with mitochondrial disease. Now what say you?


Illusion

Pronunciation:

\i-ˈlü-zhən\

Function:

noun

Etymology:

Middle English, from Anglo-French, from Late Latin illusion-, illusio, from Latin, action of mocking, from illudere to mock at, from in- + ludere to play, mock

1 aobsolete : the action of deceiving b (1): the state or fact of being intellectually deceived or misled

a (1): a misleading image presented to the vision (2): something that deceives or misleads intellectually b (1): perception of something objectively existing in such a way as to cause misinterpretation of its actual nature

synonyms see delusion

This is an illusion:



This is not:



In the first picture the dots don't really exist, they are all an illusion. In the second, the dots are really there, a fact that is easily proven. Illusions are all around us. They are fun and novel, when they come in forms of art and imagery. However, they are dangerous when they stem from issues of medicine and science.

Questions for David Kirby

I read this quote on Left Brain Right Brain, it is from David Kirby's blog on the Huffington Post. I have a few questions for Mr. Kirby. Here is the quote:

"But I have personally identified at least a dozen (and there are reports of many more) children with cases in the court who meet the exact same medical criteria as Hannah, and whose cases will almost surely be compensated as well—each time with the attendant media fanfare."

I'm curious, how did he go about "personally identifying" these "dozen" children? Can Mr. Kirby offer any documentation of these children? Are parents whose court cases are pending in vaccine court consulting with him? Exactly what criteria is Mr. Kirby using, and what records does he have access to in order to "identify" these children?

Lastly, and most interesting to me, are the children that "meet the exact same medical criteria as Hannah." I am assuming these children have had muscle biopsies and diagnoses of mitochondrial disease, exactly like Hannah. Otherwise, they could not be categorized as having the "exact same medical criteria" as Hannah. So, I would be curious to know--have these children undergone mitochondrial and genetic testing? What were those results? How did Mr. Kirby gain access to those medical records?

More Mito Docs Speak...

Finally. More mito docs are coming out of the woodwork (please read Mitochondra and vaccines - the science), and speaking out about the Poling case (even those directly involved in it). And, let me back that up by saying these physicians are highly-respected, very intelligent, experts in their fields. They spend their days and nights caring for patients with mitochondrial disease or evaluating people for possible mito abnormalities, performing studies, reading other physician's reports, and researching, researching, researching. These doctors eat, sleep, and breathe mito.

Why any parent would prefer to try and gain understanding of the complexities of mitochondrial disease (something which is a difficult task for most pediatricians and other docs to do even) from a P.R. guy, or a lawyer, or anyone other than the mito experts is beyond me. If your child has a broken bone, would you take medical advice from your stock broker? Now, your stock broker is probably very intelligent, nicely groomed, and well-spoken, but again, wouldn't you rather ask his opinion on the markets than medicine? So, why are so many parents listening to David Kirby and others like it's the gospel?

Make an appointment with Dr. John Shoffner, or Dr. Salvatore DiMauro, or Bruce Cohen, to name a couple. Let them explain the ins and outs of mitochondrial disease. Ask them if vaccines cause it. Ask them what they think of the outcries from those on the anti-vax side. Then, and only then, can real discussion on this topic begin. When you have THE experts on mitochondrial disease, saying that vaccines didn't cause mitochondrial defects in Hannah Poling, what is there to question?

I suppose the anti-vax brigade will claim that "well, they are doctors on the CDC's payroll" or some such nonsense. Take your head out of your asinine conspiracy theory for just a moment. If the running idea is that all these docs are corrupt, out to make a buck, and covert agents for the government--wouldn't they be the ones saying, "yes, kids with autism probably all have mito disease, come get tested by me."

Talk about rolling in the dough. To get a good and thorough evaluation of mitochondrial diseases and other genetic abnormalities, you are easily looking at $20,000 - 40,000. That is PER patient. If every child involved in the omnibus gets such thorough evaluations, these doctors will be millionaires in no time. So, why would these doctors state that vaccines don't cause mitochondrial disease, and therefore, vaccines do not cause the autism (or autistic features) that can sometimes occur along with mitochondrial disease?

They aren't doling out shots in their clinics, so they're not getting paid by Big-Bad-Pharma to be spokespeople for the vaccines. Why would they "cover up" a link between mito and vaccines? For no reason, that's why. There is no link. These physicians have high ethical standards, and if it was found that vaccines indeed caused mitochondrial disease, they would be the first to say it. They are striving to find a cure for mitochondrial disease. There is no reason for them to deny a possible cause to a disease they are fighting to get rid of.



**Hats off to Kristina & Kevin for their coverage on this ever-developing story!

Say WHAT Dr. Poling????

Dr. Gupta just interviewed Dr. Poling on CNN (will link to clip once its available online). Dr. Poling seemed to say that Hannah has mitochondrial DYSFUNCTION not disease. This is utterly confusing. Based on the court documents, which gives the biopsy results, I am unsure how Hannah is thought to have only mitochondrial dysfunction. She was diagnosed with oxidative phosphorylation disease (see below), which is classified as mitochondrial disease (or disorder, depending on your source, but for this sake disease and disorder are synonymous, however dysfunction is much different), certainly NOT dysfunction. Just a few weeks ago, on Larry King Live, Dr. Poling was referring to Hannah as having mitochondrial disorder (again, not dysfunction).

On Age of Autism (to read copy & paste this: http://www.ageofautism.com/2008/03/dr-jon-poling-o.html), Dr. Poling then said this:

"Thus, I will refer to Hannah’s metabolic condition as a mitochondrial dysfunction, not a mitochondrial disease."

So, is he "opting" for dysfunction instead of disease? One can only wonder why. Compare that to what is in the court documents (available here: http://www.huffingtonpost.com/david-kirby/the-vaccineautism-court-_b_88558.html):

On October 4, 2001, Dr. John Schoffner, at Horizon Molecular Medicine in Norcross, Georgia, examined CHILD to assess whether her clinical manifestations were related to a defect in cellular energetics. Pet. Ex. 16 at 26. After reviewing her history, Dr. Schoffner agreed that the previous metabolic testing was "suggestive of a defect in cellular energetics." Id. Dr. Schoffner recommended a muscle biopsy, genetic testing, metabolic testing, and cell culture based testing. Id. at 36.

FYI: This (above) refers to the signs mitochondrial dysfunction (similar to what my own daughter has). Those results, prompted this testing:

A CSF organic acids test, on January 8, 2002, displayed an increased lactate to pyruvate ratio of 28,1 which can be seen in disorders of mitochondrial oxidative phosphorylation. Id. at 22. A muscle biopsy test for oxidative phosphorylation disease revealed abnormal results for Type One and Three. Id. at 3. The most prominent findings were scattered atrophic myofibers that were mostly type one oxidative phosphorylation dependent myofibers, mild increase in lipid in selected myofibers, and occasional myofiber with reduced cytochrome c oxidase activity. Id. at 7. After reviewing these laboratory results, Dr. Schoffner diagnosed CHILD with oxidative phosphorylation disease. Id. at 3. In February 2004, a mitochondrial DNA ("mtDNA") point mutation analysis revealed a single nucleotide change in the 16S ribosomal RNA gene (T2387C). Id. at 11.

Hannah showed signs of mitochondrial dysfunction, which led to the biopsy and other testing. Those results showed that she had oxidative phosphorylation disease.

I'm not being stubborn about semantics here. There is a BIG difference between DYSFUNCTION and DISEASE. So, Dr. Poling, what exactly does Hannah have--according to her test results? It is deceiving to say she has dysfunction when, it appears, that is not the case. Dr. Poling can call whatever his daughter has, whatever he wants. However, if he is going to be the spokesperson for autism-vaccines-mitochondria business, he needs to not blur the truth.

I think it's very possible that some children with regressive autism could have a form of mitochondrial disease, and certainly more would be found to have mitochondrial dysfunction (as it is found in many neurological conditions, see here, here, here, and in other studies available online). But to point fingers at vaccines, with zero scientific evidence, is shameful. Obviously, it won't hurt for scientists to look into any possible mitochondrial-autism connection, and if it means anything.
In our case, our daughter's irregular test results are all related to her static encephalopathy and autism, just like her seizures, and other health issues are all related. My daughter was born this way, vaccines did not effect her negatively at all. I am grateful to the vaccines, as they have prevented additional hospitalizations when she contracted chicken pox and the flu. Had she not been inoculated for those, her illness would have been prolonged and more severe. Instead, we were able to care for her at home, and she was sick for a couple of days with each.

One last note, this study showed that intense exercise can cause mitochondrial dysfunction. What doesn't cause mitochondrial dysfunction? And, can we really draw any conclusions from mitochondrial dysfunction, what it means to autistics, how it truly affects humans, and what (if anything) could be done to prevent it? Certainly not yet, and maybe we'll never know. There is a possibility that mitochondrial dysfunction means very little, when it comes to autism and treatment, and also possible that the majority of us would be diagnosed with it in the future (so then, are we all at risk of getting autism from vaccines????).


Interesting enough, Jenny McCarthy, David Kirby, and Dr. Poling will all be on Larry King Live tonight. Should be one heck of a time.

More on my take on the whole mito-autism thing here.

The Parents

My first inclination was to be harsh on the Polings, especially when they practically whispered "mitochondrial" in their public appearances. They wore outrageously huge Autism puzzle bows, I wondered where their mito pins were. I was rather confused, why would they not use a public forum for a disease that needs more resources for a treatment? You see, unlike Autism Speaks, U.M.D.F. doesn't have a flock of fancy celebrities as their spokespeople, they don't have comics and musicians plugging their cause, and they haven't had a film premiere at Sundance. There is a great need for money and resources to continue the studies into mitochondrial disease. All of this, in hopes of saving lives. That's why I was upset. I've known children who have died from mitochondrial disease. Why weren't we hearing about how serious it is, and where the public may donate to such a cause?

Well, I watched the Larry King Live interview with the Poling family. At first, I felt maybe they were tired from a long day. Perhaps the stress and excitement over the media blitz was getting to them. The first segment went by, and there was zero mention of mitochondrial disease. It was all about autism. Let's just say I was doing my own commentary for the show! After the commercial break, at some point, finally the "M" word was said. With each question asked during the interview, Mr. and Mrs. Poling seemed to get a little frazzled. They looked lost. I again figured it was exhaustion.

At the very end of the their appearance, this transpired:

J. POLING: I would agree with almost every word in that statement. In terms of vaccinations, I'm certainly not anti-vaccine. I think vaccines are one of the most important medical developments within the past century-plus.

What we're trying to say, and the theory of what we felt happened to our daughter Hannah, is that she has a susceptibility to injury from stress of vaccination or potentially stress with the mitochondrial disorder of other potential insults. But clearly, what happened with our daughter was following a series of vaccinations that occurred in July.

Later on...

KING: Terry, should a parent watching the show tonight, when the pediatrician says, come in for the vaccinations, should they bring them?

T. POLING: Oh, yes, definitely. There is no evidence that children are like Hannah. We don't know -- we didn't know, actually. I don't know that she had a mitochondrial disorder prior to July 19th of 2000. I had no evidence of it in any biological tests. I don't know if it was the vaccines, getting nine at one time, that caused it.

I'm sure she has a genetic predisposition for this. I don't think that every family member has that. I don't think that every family does. And as everybody knows, there's a lot of children out there that do no not --

SHOEMAKER: Thank you, Larry. I might add that one of the theories we were prepared to present in this case is the fact that mercury in the vaccine that were given back at that time can also lead to Mitochondrial dysfunction. In this case, we do not believe it was a genetic cause. We do not believe it was a cause.

Wait a minute. The lawyer just completely disputed what the parents were saying. Also, it struck me as odd that they are "pro-vaccine." The majority of families in the vaccine cases feel strongly that the shots poisoned their child. Some are for "greening" vaccines, others are flat-out against any and all vaccinations. And, it seemed strange that a family who had gone to court, to blame vaccines, is recommending getting your child vaccinated. I think something significant happened from the time this family sought out DAN doctors to the last few years living with their child's mitochondrial disease.

Something else also dawned on me. Could it be that the Polings have signed agreements with this vaccine-hating injury lawyer? Exactly how many other clients does he have? One look at his website is quite telling (just Google Cliff Shoemaker). If he presents the public with a victory against "big pharma" and "big brother," why he'd have thousands cheering and declaring victory. But, if a term like "mitchondrial disease" were to take center-stage, this concession would mean little to the others wanting their day in court. I just wonder, if there isn't an agreement between this lawyer and his clients.

I've been given information on Mrs. Poling, she was an avid DAN believer. I have nothing to show that she remains one, or that her husband is or was ever. It appears, according to message boards, that her involvement in chelation and DAN supplements began when their child was just 2 1/2. She does state that her child was diagnosed with "mitochondrial PDD" at Hopkins and lists off her abnormal lab results (these are the blood tests that will eventually lead the family to see Dr. Shoffner for biopsy & other tests). She adds how in a mercury article, abnormal lab findings are seen with heavy metal poisoning. She describes the "biological intervention meds" her daughter takes, along with some for her "metabolic problem." Again, this is all before the Mito Complex I & III diagnosis. She lists off the meds, pretty much the mito cocktail (the docs she saw suspected mito, most docs will put a child at-risk on the cocktail prior to testing). They are already doing chelation (at 2 1/2 years of age!) at this point. She was trying to get the Lovaas ABA covered through Early Intervention or the school district as well.

It also looks like when the muscle biopsy results and diagnosis of mitochondrial disease came in, her visits to the boards stopped (last post is 11/26/01, biopsy was done on or after 10/4/01, results generally take 12 weeks). Granted, there are other message board and offline support groups, so they very well might have continued at least some DAN methods. Honestly, if my child had such a debilitating regression (loss of skills, inability to walk, feeding difficulties, etc.), which we know Hannah did, I would be devastated. If the only answers I had were "regressive encephalopathy" and "autism features" from experts, I'd probably buy into the DAN way. How could my child go from one level of functioning, and then within months be so very different? It's also important to remember how convincing DAN doctors are, how their test results appear to connect the dots, and how they very easily sink their claws into people who feel desperate.

One can assume that, after receiving the mito diagnosis, at least some changes have been made to their DAN protocol. The use of chelation no doubt stopped, it's possible her diet had to be altered as well, but the "biomedical medicine" aka mito cocktail certainly continued. So, I am going to be easy on the Polings. I do not agree with the DAN protocol, but I can see how in desperation one would seek them out. I also realize that it's highly likely they have been given a script from their lawyer. It is my hope that sometime down the road, the family will speak out--on mitochondrial disease.

I wish this family the best. I hope that Hannah continues to make progress and grow, and that the physical symptoms of her Mitochondrial Disease do not affect her deeply. I assume at some point David Kirby and others will review the details of the case--both the medical and the legal facts. Hopefully, they'll understand that autism is not mitochondrial disease, and mitochondrial disease is NOT mitochondrial dysfunction. Perhaps in time, they'll clarify that while mitochondrial disease is a debilitating, often fatal disease, autism surely is not.

At some point, they will realize this case is not a victory for them, in fact it's a victory for no one. There are no winners here--not the lawyers, not the anti-vaxers, not Hannah. The Poling family has received money from this case, but their child will always have mitochondrial disease. And that, quite frankly, is nothing to celebrate.

The Mother Factor

CONFIRMED HERE:

Jon Poling said Hannah, like her mother, has a rare inherited mitochondrial disorder. Mitochondria are the "power batteries" inside every cell of the body and supply the cell with energy.

And here it is:

Ultimately Hannah was diagnosed with mitochondrial disorder, where not enough energy is produced for cells and muscles. Her mother also has been diagnosed with the disorder...

And then they get it wrong:

...yet she shows no signs of autism. That suggests Hannah's autism symptoms are not caused by genetics, but exacerbated by the childhood shots which then triggered her autism.

No, what it suggests is that Hannah's mito is more severe than her mother's (this is common). If one reads more than a paragraph or two on mitochondrial disease, they'll plainly read that autistic features can be a symptom of mito. Just because I am not autistic, doesn't mean my daughter's autism isn't genetic. I see autistic traits in myself and my husband, as well as other family members.

Also, I'd say this very clearly proves that Hannah's mitochondria wasn't somehow "injured" by those vaccines. This is clear evidence that Hannah was born with a mitochondrial disease, and that vaccines most certainly did not cause it.

I still wonder why this wasn't mentioned during the Larry King Live show? There is also at least one false statement in this article, should you read it in its entirety, I want to clarify:

In a 2005 study, 60 Portuguese children with autism also had mitochondrial abnormalities.

The actual figure is 5 of 69 of those children with autism also had mitochondrial abnormalities.

Where's Her Mito Pin???

Hannah Poling's mother at the press conference today...see here.

I am trying to find the complete press conference, please leave me a link should you have it!

From the clip I saw, I am livid. This mother, whose child, let us not forget, has a mitochondrial disease, spoke of how agonizing autism is . She and her husband wore their big puzzle pins (where are the green UMDF pins???????). She speaks of how Early Intervention labeled her as "multiple intensive needs" (which, from what my friends at ECI tell me, words like that are typically left for children who have breathing tubes, multiple disabilities, etc., very rarely used with a child with "autistic features"). and how her husband's heart broke when he realized his daughter may have autism. The same old pity party that tells the world that all of us living with autism in our life are miserable, how we've been cheated, and how desperate our situations are. I am now certain she has been trained by DAN! or whoever on her talking points.

How sad, not only for the autism community, but also for the mito community. This could have been a wonderful time for this family to use the media as a tool for awareness for mito (and raise much-needed funds for a disease that can be fatal).

For what it's worth, Hannah is a beautiful young girl. The camera panned to her, I think in an attempt to show how "injured" she was from the vaccines. Well, for any 9 year old, to sit there quietly with a swarm of strangers and cameras, in a strange place, I think she did amazing! We've all seen politician's children go nuts during press conferences. Could I see some "signs" of autism in Hannah, yes. But, I also saw a child who sat politely (in an outfit and setting, that would probably send both my daughters into distress, btw), was able to unscrew & replace a water bottle lid, and, most importantly, a beautiful girl, with gorgeous red hair, and a contagious smile. She is, like my daughter, full of life.

Strange--Parents Don't Mention Mito!

FYI...my laptop is grumpy today, so I'm unable to paste anything.  Once I figure it out, I'll paste parts of the article.  Click on the title above to go to the article.  Thanks!

LATEST UPDATE:  HANNAH & HER FAMILY WILL BE ON LARRY KING LIVE TONIGHT!!!!!

Alison Young, for The Atlanta Journal-Constitution reveals the "CHILD" from the "concession case."  Her name is Hannah Poling, the 9 year-old lives in Georgia.  The article states how this pretty little girl helped link autism to vaccines.  No, that's not the case.  Except for a few small mentions of mito, the article is mainly about autism and vaccines.  

I have no doubt that after reading this article, thousands of parents will seek out a mito diagnosis for their child.  I've said it before, but the testing for mito must be done by an expert in the field, it is also invasive and painful, and the cost factor is rather high.  Parents may read this article, hear essentially that this girl has autism with a side of mito, not realizing what issues this child faces because of her mitochondrial disease.  They'll see their own child in Hannah, and feel certain their kid has mito too.  I shutter to think of how many autistic children will go through the testing, for no reason.  If these parents seek out real experts, like Dr. Shoffner (who diagnosed Hannah), then I'm certain they will be turned away.  He will only test if their is plenty of evidence that points to a mito or genetic disorder.  But, I fear the parents who will go to any doc who wants to make a buck, put their child under, have them tested, and then receive unreliable results.  This type of reporting is very irresponsible.

What's even more startling to me, is that her parents make no mention of mito.  Granted, reporters have the final say in what they put into a piece.  So, perhaps it was omitted.  But, if it was me, speaking to a reporter about my child who had mito, that would be my main topic of discussion.  I'd want to give as much information out about it, and discuss how it affects my child and her future.  At this point, the family describes that Hannah has mild to moderate symptoms of autism, she can speak also (apparently her loss of speech was quite temporary).  It's been written that she requires intervention these days for the issues related to symptoms of mitochondrial disease.

One key part that I read:  following the vaccines that are "to blame" in this case, Hannah was unable to walk.  She had high fever and crying.  This was followed by inability to sleep.  Three months later, signs of autism began to show.  I look at the fact that she "refused" to walk (which could be muscle-related pain, from her mito disease) as a BIG point here.  That points to mito much more clearly than it would to a PDD (with the exception, perhaps, of Rett Syndrome).  

Awaiting more from all of this.  I certainly would love a t.v. interview with Hannah and her parents.  I am still waiting to hear how her health is and the affects of mito on this 9 year old girl.