Friday, February 29, 2008

Autism "Aggravated" by Vaccines

This is a LONG read, but if you're interested, it's worth the time. Josh and I decided not to give Kate any immunizations until she's at least 2 years old, and possibly not even then. We did all the required shots for Lauren and Hayden with no negative outcome, but didn't want to jinx it. So, if you're thinking we're just a coupla hippies, here's some of why we made our decision. If you do read it, let me know what your thoughts are on the subject, even if you don't have kids.

http://www.huffingtonpost.com/david-kirby/government-concedes-vacci_b_88
323.html

Government Concedes Vaccine-Autism Case in Federal Court - Now What?

After years of insisting there is no evidence to link vaccines with the
onset of autism spectrum disorder (ASD), the US government has quietly
conceded a vaccine-autism case in the Court of Federal Claims.

The unprecedented concession was filed on November 9, and sealed to
protect the plaintiff's identify. It was obtained through individuals
unrelated to the case.

The claim, one of 4,900 autism cases currently pending in Federal
"Vaccine Court," was conceded by US Assistant Attorney General Peter
Keisler and other Justice Department officials, on behalf of the
Department of Health and Human Services, the "defendant" in all Vaccine
Court cases.

The child's claim against the government -- that mercury-containing
vaccines were the cause of her autism -- was supposed to be one of three
"test cases" for the thimerosal-autism theory currently under
consideration by a three-member panel of Special Masters, the presiding
justices in Federal Claims Court.

Keisler wrote that medical personnel at the HHS Division of Vaccine
Injury Compensation (DVIC) had reviewed the case and "concluded that
compensation is appropriate."

The doctors conceded that the child was healthy and developing normally
until her 18-month well-baby visit, when she received vaccinations
against nine different diseases all at once (two contained thimerosal).

Days later, the girl began spiraling downward into a cascade of
illnesses and setbacks that, within months, presented as symptoms of
autism, including: No response to verbal direction; loss of language
skills; no eye contact; loss of "relatedness;" insomnia; incessant
screaming; arching; and "watching the florescent lights repeatedly
during examination."

Seven months after vaccination, the patient was diagnosed by Dr. Andrew
Zimmerman, a leading neurologist at the Kennedy Krieger Children's
Hospital Neurology Clinic, with "regressive encephalopathy (brain
disease) with features consistent with autistic spectrum disorder,
following normal development." The girl also met the Diagnostic and
Statistical Manual for Mental Disorders (DSM-IV) official criteria for
autism.

In its written concession, the government said the child had a
pre-existing mitochondrial disorder that was "aggravated" by her shots,
and which ultimately resulted in an ASD diagnosis.

"The vaccinations received on July 19, 2000, significantly aggravated an
underlying mitochondrial disorder," the concession says, "which
predisposed her to deficits in cellular energy metabolism, and
manifested as a regressive encephalopathy with features of ASD."

This statement is good news for the girl and her family, who will now be
compensated for the lifetime of care she will require. But its
implications for the larger vaccine-autism debate, and for public health
policy in general, are not as certain.

In fact, the government's concession seems to raise more questions than
it answers.

1) Is there a connection between vaccines, mitochondrial disorders and a
diagnosis of autism, at least in some cases?

Mitochondria, you may recall from biology class, are the little
powerhouses within cells that convert food into electrical energy,
partly through a complex process called "oxidative phosphorylation." If
this process is impaired, mitochondrial disorder will ensue.

The child in this case had several markers for Mt disease, which was
confirmed by muscle biopsy. Mt disease is often marked by lethargy, poor
muscle tone, poor food digestion and bowel problems, something found in
many children diagnosed with autism.

But mitochondrial disorders are rare in the general population,
affecting some 2-per-10,000 people (or just 0.2%). So with 4,900 cases
filed in Vaccine Court, this case should be the one and only, extremely
rare instance of Mt disease in all the autism proceedings.

But it is not.

Mitochondrial disorders are now thought to be the most common disease
associated with ASD. Some journal articles and other analyses have
estimated that 10% to 20% of all autism cases may involve mitochondrial
disorders, which would make them one thousand times more common among
people with ASD than the general population.

Another article, published in the Journal of Child Neurology and
co-authored by Dr. Zimmerman, showed that 38% of Kennedy Krieger
Institute autism patients studied had one marker for impaired oxidative
phosphorylation, and 47% had a second marker.

The authors -- who reported on a case-study of the same autism claim
conceded in Vaccine Court -- noted that "children who have
(mitochondrial-related) dysfunctional cellular energy metabolism might
be more prone to undergo autistic regression between 18 and 30 months of
age if they also have infections or immunizations at the same time."

An interesting aspect of Mt disease in autism is that, with ASD, the
mitochondrial disease seems to be milder than in "classic" cases of Mt
disorder. In fact, classic Mt disease is almost always inherited, either
passed down by the mother through mitochondrial DNA, or by both parents
through nuclear DNA.

In autism-related Mt disease, however, the disorder is not typically
found in other family members, and instead appears to be largely of the
sporadic variety, which may now account for 75% of all mitochondrial
disorders.

Meanwhile, an informal survey of seven families of children with cases
currently pending in Vaccine Court revealed that all seven showed
markers for mitochondrial dysfunction, dating back to their earliest
medical tests. The facts in all seven claims mirror the case just
conceded by the government: Normal development followed by vaccination,
immediate illness, and rapid decline culminating in an autism diagnosis.

2) With 4,900 cases pending, and more coming, will the government
concede those with underlying Mt disease -- and if it not, will the
Court award compensation?

The Court will soon begin processing the 4900 cases pending before it.
What if 10% to 20% of them can demonstrate the same Mt disease and same
set of facts as those in the conceded case? Would the government be
obliged to concede 500, or even 1,000 cases? What impact would that have
on public opinion? And is there enough money currently in the vaccine
injury fund to cover so many settlements?

When asked for a comment last week about the court settlement, a
spokesman for HHS furnished the following written statement:




"DVIC has reviewed the scientific information concerning the allegation
that vaccines cause autism and has found no credible evidence to support
the claim. Accordingly, in every case under the Vaccine Act, DVIC has
maintained the position that vaccines do not cause autism, and has never
concluded in any case that autism was caused by vaccination."

3) If the government is claiming that vaccines did not "cause" autism,
but instead aggravated a condition to "manifest" as autism, isn't that a
very fine distinction?

For most affected families, such linguistic gymnastics is not so
important. And even if a vaccine injury "manifested" as autism in only
one case, isn't that still a significant development worthy of informing
the public?

On the other hand, perhaps what the government is claiming is that
vaccination resulted in the symptoms of autism, but not in an actual,
factually correct diagnosis of autism itself.

4) If the government is claiming that this child does NOT have autism,
then how many other children might also have something else that merely
"mimics" autism?

Is it possible that 10%-20% of the cases that we now label as "autism,"
are not autism at all, but rather some previously undefined "look-alike"
syndrome that merely presents as "features" of autism?

This question gets to the heart of what autism actually is. The disorder
is defined solely as a collection of features, nothing more. If you have
the features (and the diagnosis), you have the disorder. The underlying
biology is the great unknown.

But let's say the government does determine that these kids don't have
actual "autism" (something I speculated on HuffPost a year ago). Then
shouldn't the Feds go back and test all people with ASD for impaired
oxidative phosphorylation, perhaps reclassifying many of them?

If so, will we then see "autism" cases drop by tens, if not hundreds of
thousands of people? Will there be a corresponding ascension of a newly
described disorder, perhaps something like "Vaccine Aggravated
Mitochondrial Disease with Features of ASD?"

And if this child was technically "misdiagnosed" with DSM-IV autism by
Dr Zimmerman, how does he feel about HHS doctors issuing a second
opinion re-diagnosis of his patient, whom they presumably had neither
met nor examined? (Zimmerman declined an interview).

And along those lines, aren't Bush administration officials somewhat
wary of making long-distance, retroactive diagnoses from Washington,
given that the Terry Schiavo incident has not yet faded from national
memory?

5) Was this child's Mt disease caused by a genetic mutation, as the
government implies, and wouldn't that have manifested as "ASD features"
anyway?

In the concession, the government notes that the patient had a "single
nucleotide change" in the mitochondrial DNA gene T2387C, implying that
this was the underlying cause of her manifested "features" of autism.

While it's true that some inherited forms of Mt disease can manifest as
developmental delays, (and even ASD in the form of Rhett Syndrome) these
forms are linked to identified genetic mutations, of which T2387C is not
involved. In fact little, if anything, is known about the function of
this particular gene.

What's more, there is no evidence that this girl, prior to vaccination,
suffered from any kind of "disorder" at all- genetic, mitochondrial or
otherwise. Some forms of Mt disease are so mild that the person is
unaware of being affected. This perfectly developing girl may have had
Mt disorder at the time of vaccination, but nobody detected, or even
suspected it.

And, there is no evidence to suggest that this girl would have regressed
into symptoms consistent with a DSM-IV autism diagnosis without her
vaccinations. If there was such evidence, then why on earth would these
extremely well-funded government attorneys compensate this alleged
injury in Vaccine Court? Why wouldn't they move to dismiss, or at least
fight the case at trial?

6) What are the implications for research?

The concession raises at least two critical research questions: What are
the causes of Mt dysfunction; and how could vaccines aggravate that
dysfunction to the point of "autistic features?"

While some Mt disorders are clearly inherited, the "sporadic" form is
thought to account for 75% of all cases, according to the United
Mitochondrial Disease Foundation. So what causes sporadic Mt disease?
"Medicines or other toxins," says the Cleveland Clinic, a leading
authority on the subject.

Use of the AIDS drug AZT, for example, can cause Mt disorders by
deleting large segments of mitochondrial DNA. If that is the case, might
other exposures to drugs or toxins (i.e., thimerosal, mercury in fish,
air pollution, pesticides, live viruses) also cause sporadic Mt disease
in certain subsets of children, through similar genotoxic mechanisms?

Among the prime cellular targets of mercury are mitochondria, and
thimerosal-induced cell death has been associated with the
depolarization of mitochondrial membrane, according to the International
Journal of Molecular Medicine among several others. (Coincidently, the
first case of Mt disease was diagnosed in 1959, just 15 years after the
first autism case was named, and two decades after thimerosal's
introduction as a vaccine preservative.)

Regardless of its cause, shouldn't HHS sponsor research into Mt disease
and the biological mechanisms by which vaccines could aggravate the
disorder? We still do not know what it was, exactly, about this girl's
vaccines that aggravated her condition. Was it the thimerosal? The three
live viruses? The two attenuated viruses? Other ingredients like
aluminum? A combination of the above?

And of course, if vaccine injuries can aggravate Mt disease to the point
of manifesting as autism features, then what other underlying disorders
or conditions (genetic, autoimmune, allergic, etc.) might also be
aggravated to the same extent?

7) What are the implications for medicine and public health?

Should the government develop and approve new treatments for "aggravated
mitochondrial disease with ASD features?" Interestingly, many of the
treatments currently deployed in Mt disease (i.e., coenzyme Q10, vitamin
B-12, lipoic acid, biotin, dietary changes, etc.) are part of the
alternative treatment regimen that many parents use on their children
with ASD.

And, if a significant minority of autism cases can be linked to Mt
disease and vaccines, shouldn't these products one day carry an FDA
Black Box warning label, and shouldn't children with Mt disorders be
exempt from mandatory immunization?

8) What are the implications for the vaccine-autism debate?

It's too early to tell. But this concession could conceivably make it
more difficult for some officials to continue insisting there is
"absolutely no link" between vaccines and autism.

It also puts the Federal Government's Vaccine Court defense strategy
somewhat into jeopardy. DOJ lawyers and witnesses have argued that
autism is genetic, with no evidence to support an environmental
component. And, they insist, it's simply impossible to construct a chain
of events linking immunizations to the disorder.

Government officials may need to rethink their legal strategy, as well
as their public relations campaigns, given their own slightly
contradictory concession in this case.

9) What is the bottom line here?

The public, (including world leaders) will demand to know what is going
on inside the US Federal health establishment. Yes, as of now, n=1, a
solitary vaccine-autism concession. But what if n=10% or 20%? Who will
pay to clean up that mess?

The significance of this concession will unfortunately be fought over in
the usual, vitriolic way -- and I fully expect to be slammed for even
raising these questions. Despite that, the language of this concession
cannot be changed, or swept away.

Its key words are "aggravated" and "manifested." Without the aggravation
of the vaccines, it is uncertain that the manifestation would have
occurred at all.

When a kid with peanut allergy eats a peanut and dies, we don't say "his
underlying metabolic condition was significantly aggravated to the
extent of manifesting as an anaphylactic shock with features of death."

No, we say the peanut killed the poor boy. Remove the peanut from the
equation, and he would still be with us today.

Many people look forward to hearing more from HHS officials about why
they are settling this claim. But whatever their explanation, they
cannot change the fundamental facts of this extraordinary case:

The United State government is compensating at least one child for
vaccine injuries that resulted in a diagnosis of autism.

And that is big news, no matter how you want to say it.

NOTE: Full text of the government's statement is posted here.

David Kirby is the author of "Evidence of Harm - Mercury in Vaccines and
the Autism Epidemic, A Medical Controversy" (St. Martins Press 2005.

11 comments:

froelica said...

Its very interesting. When you think about the number of cases of autism in the past century and the rise in the use and types of vaccines, its something to consider. I don't think its weird at all to at least wait until she's 2 to get vaccines. I'm not sure that I'd not get them EVER... I don't have enough information, though, not ever having had children myself. I do know that the diseases we're vaccinated for are still active throughout the world. Hell, people still get tested for TB regularly in most parts of the world. At my new job I have to look through international students' medical records, and I'm like "That still exists?!?!" The only things that would stop me from not getting my kid vaccinated as you're mulling over, I think, would be the likelihood of getting the disease this day-and-age, and also- don't they require vaccinations for school, sports, and whatnot? Like I said, I don't have all the information, but I definitely wouldn't be opposed to holding off on the vaccines AT LEAST for a while. And I don't think you're filthy hippies either :)

Nicole said...

Sarah, I am totally 1000% behind you!!! And I think you should not ever get her vaccinations!!!! We did all the required with Ethan until he was 3 and then have not given them to him since. Eric started doing research around his third birthday and started to recognize a lot. Just with the autism factor - 1 in 150 now blows us away!! With all the research Eric did, we finally put our foot down and will no longer allow any doctor to talk us in to shooting our son up with shots that I have no idea what is in them. We even had a doctors office down here in Arizona REFUSE to see Ethan further unless we gave him the 5-6 shots he was "missing" since the age of 3. We said thanks, but no thanks, and walked out. I cannot believe a doctor who is supposed to love children would refuse to see one because we wouldn't give him the "required" shots. There is no one in the world who should make the decision of vaccinations but the parents of the child. I just ordered a book last night called "What your doctor may not tell you about children's vaccinations" by Stephanie Cave. I have heard great things about this book in helping parents make decisions on vaccinations. It is not a "no vaccination" book but provides information that all parents, new and old, should read. Anyhow, you can tell this is a subject I could talk forever about so I'll leave it at that. Oh I will make mention.....research what your state requires as far as vaccinations. Here in Arizona, we can opt out due to religious reasons or personal beliefs and he will still be allowed to attend any public or private school with a letter from his doctor signed by us. The schools will fight you but if you have your stuff together, they can't do much more than give you a dirty look. I support whatever decision you and Josh make with your children, but am very happy to hear you are doing without for now!!

Nicole said...

www.nvic.org

More answers to questions you may have. :)

Sarah said...

Thanks for your two cents guys. I really appreciate it. Nikki, thanks for the link to that website. I have been looking at it for about an hour now and there's a lot of good info on there. I might order that book too.

Nicole said...

I'm supposed to be getting the book on Tuesday so I will let you know what I think. NVIC has tons and tons of information as you have probably noticed. :)

kara said...

that's a lighthearted read. i guess parenting is all about gaging the risks either way. and then acting on your decision. and then going out for ice cream. good luck to you.

Maggie said...

I also agree with you Sarah, we stopped Vasili's at 18 months and Eloise hasn't had any. There was a book I read (a bit of), and now I can't think of the name of it, but I read the chapter on SIDS being related to vaccines, and that's what really turned me away from them. Parents and grandparents talking about how healthy their child was and a few days after vaccines, they didn't wake up. Specifically the Pertusis (whooping cough) vaccine. Could you imagine? That would be one of the hardest things a parent would have to go through.

Emily said...

Well I have to say that it does scare me - it was one of the things we struggeled with when we had our kids - however we did decide to vaccinate them. I feel that if you can't trust a doctor then who can you trust for goodness sake. I can't imagine them ALL being so blind by money that they would DEMAND a child be vaccinated even if the risk is so huge. I feel that part of the study is hard to argue with but I also feel that the statistics shown are so high as of recent because they have SO many new ways of testing for autism. Autism is a VERY hard thing to diagnose. How do we know for sure that it wasnt just something missed in a child before and now because of the testing that they have so early in a childs life they are able to detect it and treat it much earlier. As of a few years ago they couldn't even diagnose a child with autism until they were over 4 years old - now they can detect it MUCH earlier on - and children as early as 2 have been diagnosed. I have a hard time with this one - I have to be honest.

Nicole said...

Em - Everyone is entitled to their own opinions, especially when you have children. Eric and I have researched a ton and continue to all the time because we are extremely fearful of what these shots could do to Ethan and what they have already done. You are my cousin and I love you dearly, but I do not agree that you can trust all doctors. They give you just enough information at your well checks to make it seem as if the vaccination is okay but not enough to really allow a parent to make an informed decision. Again, please know I value your opinion and your thoughts but at the same time, not agree with them entirely. Autism cannot be tested for - it is entirely a visual screening based on developmental environments and pure discussion with the parents and child. I'm reading a book on Autism right now and there are a few "strings" of it - some that can be detected early as you said and some that cannot be detected until the child is near 5 years old. It is such a vast and touchy subject and although no one knows the "cause" for autism, doctors would rather blame genetics or the environment over vaccinations than admit it ever would be vaccinations. There are too many cases out there that point to vaccinations as the cause for these children's autism. I can't believe it's genetics due to the fact that the number of cases of autism are out of control! 1 in 150 children have a form of autism! The common denominator with all children is vaccinations. I'm looking at Ethan's vaccination card and it shows 27 vaccinations to be had by the time he turns 6. That's nuts. Ok, enough of my thoughts. This is a very sensitive subject for me because of Ethan. :)

Emily said...

You don't ever have to worry about stepping on toes in this family. We all have our opinions and are constantly "telling" each other what they are. You are completely entitled to your opinion and I have no problem with hearing it. I'm not close minded about the topic of autism and vaccinations. Sarah and I talk about it all the time. I just get very nervous about NOT giving them the shots and they end up sick with something life threatening.... I know that some of the shots are not necessary but there are some that frighten me a lot.
I don't trust EVERY doctor - just to clarify - we did a lot of research in finding the "right" doctor for our girls.

Anyway - enough enough... we all feel strongly about this very scary decision. Being a parent is so much harder than just making sure they are clean and fed.... I learn more and more every day. You've been parenting a lot longer and I do value your opinion.
Love you!

Maggie said...

Emily, I felt the same way you feel when we were stopping Vasili's. But I thought I would say 1 more thing... the things that they are vaccinated for, can be treated with meds if they happen to get something, that's what our doctor has told us. Our doctor is just a regular pediatritian at Kaiser, so she has to tell us that she recommends them, but she has been seeing a lot more people choosing not to. We have been told if our kids have a high fever to bring them in. Our parents even had measels and mumps it was very common then. I totally understand, though, you being nervous about not vaccinating.