Archive for the 'Parent Support' Category

Physician Admits to Autism-Vaccine Link

Author: mom_to_one, 07 22nd, 2008

Physician Admits to Autism-Vaccine LinkThe link between vaccination and autism continues to become a hot issue as doctors vehemently deny it, while both parents and others in the medical community claim that the link is valid.

In a letter to the St. Louis Post-Dispatch, physician, Dr. David Ayoub, claims that pediatricians rely on information provided by the American Academy of Pediatrics, which is funded by the companies that manufacture vaccines.

“With the recent concession by government health officials that childhood vaccines worsened a rare, underlying disorder that ultimately led to autism-like symptoms in a Georgia girl, and that she should be paid from a federal vaccine-injury fund, the facade of lies is beginning to crumble. I urge parents and pediatricians to do their own research with a thorough review of available literature and stop trusting reassuring claims from the very agencies that are responsible for this horrible debacle,” wrote Dr. Ayoub.

Program Hopes to Expand

Author: mom_to_one, 06 20th, 2008

Program Hopes to ExpandIn the latest autism news, Marathon County residents who worry about a loved one at risk of wandering away will have an added safety net when a local agency can raise enough money and volunteer support.

The Aging and Disability Resource Center of Central Wisconsin needs about $15,000 and trained rescue personnel to start Project Lifesaver in the county, said Lonnie Cole, the center’s Older Americans Act director.

Project Lifesaver provides traceable radio-transmitter wristbands for people who suffer from dementia or other conditions such as autism that make them vulnerable to becoming lost and endangering themselves.

The resource center already has implemented Project Lifesaver in Wood County. The agency serves both counties.

Wood County authorities joined the national program in February 2007, four months before a 7-year-old autistic boy went missing from his Wisconsin Rapids-area home. He was found dead in a nearby pond a year ago today. The boy’s mother since has become a Project Lifesaver donor.

“For the most part, those we have on the program in Wood County are children with autism,” said Tami Drew-Huiras, a social worker in charge of the county’s Project Lifesaver efforts.

“We could have hundreds of people signed up for it,” she said. “I know for a fact that there are many more people out there who could use it.”

Cole said she has yet to calculate how many Marathon County residents would qualify for Project Lifesaver, which asks that families pay $25 a month for the service.

Parents Stand Up

Author: mom_to_one, 06 18th, 2008

thimerosalWhile preparing for the birth of her daughter, Christy Rue stumbled across a concern that she is now trying to share with every parent.

The 25-year-old mother is one of thousands who have picked up the cause to promote cleaner vaccines.

“The doctors give the shots, you know, so they must be safe,” Rue said.

But the disheartening facts, she said, are children are being disabled and pharmaceutical companies are paying lobbyists to help the vaccines pass through Washington.

“I’m not against vaccines,” Rue said. “I just want them to clean up the stuff they’re putting in there and give them a safer schedule.”

To make her concerns heard, Rue and her children traveled to Washington, D.C., for the “Green Our Vaccines, Too Many, Too Soon” march and rally two weeks ago. The three were among 8,000 people that walked from the Washington Memorial to the Capital Building, holding signs demanding change and pictures of children who lost their lives from reactions to vaccines.

“It was amazing to see how many people have been affected by vaccines and nobody knows about it,” Rue said. “To look around and see all these children, these innocent children who are victims, who now are having severe issues mentally and physically.

“When we walked down Independence Avenue it was a surreal feeling because so many other Americans had done this before for an important cause. But this is not just any old cause that will be forgotten about tomorrow. These are our kids and they are our future.”

The support for clean vaccines – meaning extracting toxins like formaldehyde, aluminum, antifreeze and mercury – has been slow because a majority of the medical community denies a link between vaccines and certain disorders such as autism.

Parents of autistic children believe autism is linked to mercury-based vaccines given to children as infants.

The mercury-based thimerosal was removed from most childhood vaccines in 2001 because of the autism fears. The number of autism cases continue to rise, though, leading health officials to set aside the connection. Today, 1 in 150 children have the disorder.

“Scientist say there’s no link, but who is paying for the research?” Rue said.

One of the main battles green-vaccine promoters face are the special interest and biased ties scientists have, she said.

Along with Mothers Against Mercury, a North Carolina-based organization, Rue is spreading the word about N.C. House Bill 431. The bill, which would limit the amount of thimerosal in vaccines, passed in the N.C. House last year, but failed to make it past the Senate’s Health Committee, Rue said.

Sitting in the pediatricians office last week, Rue said she looked around and wondered how many parents knew what was in the vaccines their children would receive.

“I’m not against vaccines by any means, I just don’t want my child being 1 in 150,” Rue said. “I don’t want anyone’s children.”

Autism Risk Higher For Preterm and Low Birthweight Girls Autism research from the US suggests that compared to other developmental disabilities, low birthweight and premature birth was linked to a higher risk of autism, especially for girls.

The study had two goals. The first was to find out how frequently autism prevailed compared to that of other developmental disabilities in low birthweight and preterm babies, and the second was to establish the specific risks involved.

For the first goal, the researchers counted all children born in Atlanta between 1981 and 1993 who survived until the age of three. These were located from vital records.

From this group they then identified those that were still living in Atlanta at age between 3 and 10, and who had developmental disabilities: autism, mental retardation, cerebral palsy, hearing loss, or vision impairment. They used another set of records for this, the Metropolitan Atlanta Developmental Disabilities Surveillance Program.

For the second goal, the researchers looked at records from the first goal and created a “nested case-control sample”, with those children identified as having autism being the “cases”, and those who were not identified as having a developmental disability (or in receipt of special education) as the “controls”. (It is a nested sample because these groups are subgroups of the overall cohort). Over 550 case-control pairs were created.

The results showed that:
• Compared to other developmental disabilities, the prevalence of autism in preterm or low birthweight children was significantly lower.
• Birthweight below 5.5 lbs and birth at less than 33 weeks gestation was linked to a twofold increase in autism risk.
• This increased risk of autism was higher in girls and when autism was accompanied by other developmental disabilities.
• For example, there was a significant fourfold risk of autism in low birthweight girls who also had mental retardation, whereas there was no significant increased risk in low birthweight boys for autism alone.

The authors concluded that:

“Gender and autism subgroup differences in birth weight and gestational age, resulting in lower gender ratios with declining birth weight or gestational age across all autism subgroups, might be markers for etiologic heterogeneity in autism.”

“There may be sex differences in genetic factors leading to autism.”

Low birthweight and pre-term birth are already known to be among the biggest risk factors for developmental disabilities.

Helping Out my Frustrated Child

Author: mom_to_one, 04 22nd, 2008

Helping Out my Frustrated ChildAs any likeminded adult could repeat, parenting a child with autism is a taxing journey.  Parenting in itself isn’t easy, but watching your child unable to express themselves due to a factor that is beyond their control is heartbreaking. 

There are times when I’m trying to help my child out with a puzzle or play with them and they get extremely frustrated and stomp away.  After that, it takes a long time to calm them down.  Recently, we’ve been treating their autism with PCM-Rx, which not only has detoxification elements, but it also has a calming affect.  There’s been a change in my child within the last few weeks that we’ve been using PCM-Rx.  Obviously, we will have to work together to treat their autism, but to let them know that everything will be alright and that a hug can actually get them to stop from destroying things is a wonder in itself.

Announcement from Autism One

Author: mom_to_one, 03 20th, 2008

ADVANCED PARENT TRAINING SESSION
AUTISM ONE 2008 CONFERENCE, MAY 21-25, 2008, CHICAGO, IL
www.autismone.org 

Friday, May 23rd from 1:45 – 6:00 pmHave you been to several biomedical autism conferences over the years?  Has your child been using biomedical interventions, diets, and supplements for a while?  Then join us for this new feature of Autism One and hear:

Sudhir Gupta, MD, PhD presents:
Contemporary Immunological View for the Pathogenesis of Autism

Autism is a multi-factorial and polygenic disorder in which immunological and metabolic factors appears to play a role in the pathology of the brain and the gut.  In this presentation Dr. Gupta will provide evidence and propose a role of determination of fates of CD4 T cells to explain the pathology in the brain and the gut of autistic children.  A role of oxidative stress in the cells of the immune system will also be discussed. 

Mary Megson, MD presents:
Medical Management of the Improving Autistic Child:  Does my child still need 25 supplements a day?

Experienced parents are very knowledgeable and have tried various biological interventions with their children with autism as they heal.  This talk will discuss treatment of those “almost off the spectrum” kids.  Many need support in long term management of their child’s ongoing biomedical treatment. 

Anju Usman, MD presents:
From Complexity to Simplicity:  Implementing the right protocols for your child with ASD

 Biomedical interventions have evolved over the past decade from B-6/Magnesium to options almost too numerous to count.  In our attempt to leave no stone unturned, some effective and non-invasive interventions may be overlooked.  We will discuss a few protocols that we have developed and refined over the years.  These protocols are individualized based on specific signs, symptoms, and laboratory biomarkers.  Protocols to be discussed will include those for:  strep/aluminum, glutamate/Ca+2, ammonia/biofilm, COMT ++, COMT–.

Jeff Bradstreet, MD presents:
Understanding the Core of the Gut-Brain Connection and How to Fix It in ASD

The automatic regulation of the gut largely requires a balance between two opposing sides of the nervous system: the sympathetic (fear, fight, and fight) and the parasympathetic (rest, focus and digest).  The rest and digest side uses acetylcholine as its main transmitter and the vagus nerve as the principle pathway. The vagus nerve simultaneously regulates motility, digestion, heart rate and speech (through the recurrent laryngeal nerve). Now we know it also provides anti-inflammatory signaling to the GI tract as well. It is likely the vagus nerve plays a central role in ASD symptoms and recovery.
 

HOPE IS ALWAYS REAL
RECOVERY IS HAPPENING 

Autism one 2008 conference, May 21-25, 2008, CHICAGO, IL
For a list of 100+ speakers and presentation abstracts (in progress) visit:
www.autismone.org

Hannah Poling press conference

Author: mom_to_one, 03 15th, 2008

FAIR Autism Media has posted the press conference held earlier today in Atlanta with the family of Hannah Poling.

Click here to view:  http://www.autismmedia.org/media11.html

Brief Facts About Autism

Author: mom_to_one, 03 10th, 2008

Autism in ChildrenAutism is a brain development disorder that impairs social interaction and communication, and causes restricted and repetitive behavior, all starting before a child is three years old. This set of signs distinguishes autism from milder autism spectrum disorders (ASD) such as Asperger syndrome.  Visit http://www.helpyourautisticchild.com/ for more information.

Autism is highly heritable, although the genetics of autism are complex and it is generally unclear which genes are responsible. In rare cases, autism is strongly associated with agents that cause birth defects. Other proposed causes, such as childhood vaccines, are controversial and the vaccine hypotheses lack convincing scientific evidence. Most recent reviews estimate a prevalence of one to two cases per 1,000 people for autism, and about six per 1,000 for ASD, with ASD averaging a 4.3:1 male-to-female ratio. The number of people known to have autism has increased dramatically since the 1980s, at least partly due to changes in diagnostic practice; the question of whether actual prevalence has increased is unresolved.

Autism affects many parts of the brain; how this occurs is poorly understood. Parents usually notice signs in the first two years of their child’s life. Early behavioral or cognitive intervention can help children gain self-care, social, and communication skills. There is no cure. Few children with autism live independently after reaching adulthood, but some become successful, and an autistic culture has developed, with some seeking a cure and others believing that autism is a condition rather than a disorder.

Autism Bill Put on Hold

Author: mom_to_one, 03 03rd, 2008

Monday March 3, 2008

Autism bill put on hold

Daily Mail Capitol Reporter

A bill that would have forced health insurance companies to provide coverage for autism has been downgraded to a study resolution, upsetting autism advocates and a state lawmaker who championed the measure.   Read more…

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

By David Kirby  Posted February 25, 2008 | 12:42 PM (EST)



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