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05-17-08 | 08:55 am

Ryan & a Roller Coaster ? ! ? !

Would you believe any 3-1/2 year old would love roller coasters let alone one with Autism? Ryan wouldn't get off it & kept pulling the guard rail back down every time the ride ended! He also kept yelling "Again Again Again" which really floored Maggie & I. It was a great night. Photo below and videos on you tube...

Scott

04-30-08 | 02:39 pm

We're back....

Ryan, Maggie & I have been so busy we haven't had a chance to update the site in awhile. Look for some updates, info and more in the coming days!!!

Scott

02-28-08 | 02:57 pm

Govt. Admits Thimerosal-Autism Link

From HUFFINGTON POST http://www.huffingtonpost.com/david-kirby/government-concedes-vacci_b_88323.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"

Scott

02-24-08 | 09:06 am

Ryans New Friend: Jenny McCarthy

Jenny was kind enough to send her support (and a nice signed photo) to Ryan... Thanks Jenny!"

Scott

02-18-08 | 11:52 am

A word....

Last night at dinner Ryan sat at the table in a normal chair, played with his cousins and even asked for water! He has sure improved over the last few months. Thanks to everyone for your help - donations, ads placed, bartered ads, therapists, friends and family - we love you all!!!

Scott & Maggie

02-10-08 | 11:24 am

No word from AP or Dr. Geschwind

One month and no response from AP/Associated Press or from Dr. Geschwind regarding my letter about stockpiled vaccines and the rate of Autism in California. Well what should I have expected right?

Scott

01-10-08 | 10:12 am

Letter back to Dr. Geschwind

Dr. Geschwind,

Thanks for the fast response to my letter yesterday. Still my question remains unanswered, did the study take into account for stockpiles of vaccines with Thimerosal still being used or did California ban it from use in children under three? Perhaps the study singled out a group of doctors whom would not use the old Thimerosal full vaccines?

If the stockpiled vaccines were still being used during this analysis of Autism rates, how was it determined that less Thimerosal was being administered? Wouldn't it be a great error in judgement to publish findings as conclusive if the children were still being exposed to it?

Scott

01-10-08 | 10:10 am

Autism Rates in California - RESPONSE from Dr. Geschwind

From Dr. Geschwind:

Thank you for your mail.

Thimerisol is not my study but the idea is that there has been a clear large decrease in thimerisol exposure via vaccine, yet autism is on the rise

Therefore there must be other factors far more important than thimerisol

This is in the context of many studies now showing no relationship

Best Daniel H Geschwind

Scott

01-08-08 | 11:50 am

California Autism Rates

I am sure many of you have heard the news that Autism rates in California continue to rise even though Thimerosal has been removed from vaccines for kids under 3. I wrote this letter to Alicia Chang the Associated press author of the article as well as Dr. Daniel Geschwind the Dr. mentioned in the article. I will let you know if I hear back...

Dear Alicia,

My name is Scott and my son Ryan is 3. Ryan has Autism which I trully believe was set off by the Thimerosal in the MMR and Flu shots that were give to him on the same day - November 23, 2005

Like so many stories you have heard by now, within a week Ryan lost all speech and communication skills. He went from a being a very happy child to staring at the walls and drooling with a lifetime of therapy ahead of him

Be sure to take note that the date the shots were given to him was in 2005 - well after the government "removed" Thimerosal from childhood vaccines for kids under 3. What you may be missing is that Thimerosal is a preservative used to extend the shelf live of vaccines - up to 20 years!

Just because new vaccines no longer have Thimerosal in it does not mean our children are not getting it in their shots. My son Ryan is a case in point. I specifically knew about the removal of Thimerosal and even mentioned it when Ryan got the MMR shot but felt safe that it was not present. I never even thought it could be in the Flu shot.

So what is the significance? It turned out that both the MMR and Flu shots given to Ryan on November 23, 2005 were manufactured way back in 1998. Both had Thimerosal in it so Ryan received double the amount that most kids would get.

Now this brings me to your article and subsequently every major news channel that has broadcast it over the last few days...

Could you please answer a question for me in regards to the Autism rates in California continuing to rise?

In California, are they still using the many years worth of stockpiled, Thimerosal full vaccines until they run out or did they actually ban doctors from giving any to children under 3?

If they are using the stockpiles then stating that Thimerosal is not a factor would be false and misleading. However, if they are not using the stockpiles then the conclusions would appear to be correct.

Thank you again for your time. I know many people who await your response.

Scott

12-10-07 | 11:08 pm

Mr. Potato Head & Speech Therapy

Here is a photo of Ryan today at speech therapy today. There are new videos of him on you tube...

Scott

11-27-07 | 01:33 pm

Ryan gets into everything...

First Ryan tries to go to Australia - the hard way. Then this morning he climbs out of his car seat and locks Maggie out of the car! He sat in the driver's seat playing with the wheel, laughing at her! What's next?

Scott

11-08-07 | 11:02 am

Melatonin = Sleep

After almost 2 years of no sleep a doctor at Childrens Hospital of Philadelphia recommended we give Ryan some melatonin - 1/2 mcg to be exact. Why they didn't suggest that before is beyond me BUT: After crushing 1/4 of a 3 mcg tablet and putting it into his milk, Ryan drank it the climbed right into bed and went to sleep! Oh how I hope this keeps up as not only did Maggie & I get some needed rest, we also got to watch some TV that didn't have puppets in it!!! FYI: The Melatonin was $5 at Walmart for 60 tablets of 3 mcg.

Scott

10-31-07 | 08:41 pm

Halloween Night

Ryan may have been pooped at therapy this afternoon but he sure had a blast Halloween night!!! Check out the video on youtube...

Scott & Maggie

10-31-07 | 04:50 pm

Happy Halloween

Ryan was all partied out at therapy today..."

Scott & Maggie

10-29-07 | 09:40 am

CNN Video

Video on CNN about signs of Autism CNN

Scott

10-26-07 | 09:28 am

VH1 R O C K A U T I S M

VH1 has a great new sit ededicated to Autism Awareness. See it here: VH1 R O C K A U T I S M

Scott

10-25-07 | 02:21 pm

MySpace updated

We have stared to make some improvements to the myspace page see it here: MySpace

Scott

10-23-07 | 12:20 pm

Yahoo Article on lack of sleep...

Emotions Run Amok in Sleep-Deprived Brains

Scott

10-22-07 | 02:35 pm

New Yorker article on high cost of education for Autistic children

The Autism Clause: A handful of new schools charge up to $140,000 a year to educate an autistic child. Who can pay that much? Anyone with the right lawyer.

Scott

10-22-07 | 11:45 am

CNN article on

Tests reveal high chemical levels in kids' bodies

Scott

10-18-07 | 10:29 am

Thimerosal news & articles:

The Great Thimerosal Cover-up: Mercury, vaccines, autism and your child's health here
U.S. Court of Federal Claims - Cedillo v. Secretary of Health and Human Services Case No. 98-916V
Thimerosal News
The Robert Kennedy Article
Thimerosal Resource Guide
National Autism Association chart comparing Mercury Poisoning & Autism Symptoms
Wired Science Article
Wired Science Follow-up Article
The FDA's Page on Thimerosal

Scott & Maggie

10-16-07 | 11:36 am

New video on YouTube

A short video is up on our YouTube page with Ryan throwing me the ball. Not the best quality as it is from my cell phone but you'll get the idea.

Scott

10-13-07 | 09:56 pm

Today at the park...

Ryan actually had a short catch with me today, well sort of. He tossed a ball down a slide at the park to me a few times. Hey, I'll take what I can get! Check out todays photo - he really didn't want to leave the park...

Scott

10-12-07 | 10:43 am

Coming soon...

We will be adding links to interesting articles and relevant information in the coming days. Be sure to keep checking back!

Scott

10-11-07 | 10:15 pm

Barter

We have gotten some requests for barter of the ad space. We are more then happy to exchange space for products & services that will benefit Ryan. Feel free to make an offer...

Scott & Maggie

10-11-07 | 02:02 pm

Did you know...

For all the businesses looking at this site: you ad can be written off as an advertising expense!

Scott

10-10-07 | 09:24 am

Off and running...

Thanks to everyone helping to get the word out about the site. We truly appreciate it!

Scott & Maggie

10-08-07 | 09:56 pm

Ryan's 3rd Birthday

Happy Birthday Ryan!

Mom & Dad

10-05-07 | 01:09 pm

WELCOME !

Hello & Welcome to the site. We will be updating it a bit over the coming days so stay tuned. You can also check us out on You Tube & Myspace. YOU TUBE: youtube.com/scottmaggie MYSPACE: myspace.com/ryansfuture

Scott

11-30-99 | 12:00 am

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