October 30, 2006

Dateline NBC: Jim Adams, Autism & Chelation



iAbida Individual Communication Management

I found this site about a week ago and it looks REALLY helpful. We may end up using it for Chandler's care.

Press Release:
iAbida Individual Communication Management™ Proves Valuable to the VP of the Autism Society of Iowa

Sonya Wills, the mother of three autistic children, and the Vice President of the Autism Society of Iowa, has found success with an online application for centralizing communication with her team of professionals.

HARPSWELL, ME (PRWEB via PRWeb) October 30, 2006 -- iAbida Inc. today announced that Sonya Wills has cut communication time in half by using iAbida with educators that work with her three autistic children. iAbida's Individual Communication Management™ system enables schools and parents to drive communication through a password protected web application.

Sonya says "we use this website to REPLACE daily communication journals between home and school. We also have our HHA, SCL, and Respite providers post their experiences here. Speech Therapists and Occupational Therapists can post here also. Instead of keeping a spiral notebook with only correspondence between the teacher/associate and home, you have everybody's input all in one place and you can create reports and print off everything from one specified date to another (we currently do this monthly). Since my kids see a psychiatrist, he is able to review what has happened with the children both at home and at school BEFORE we arrive at our regularly scheduled appointments and advise us based on this information."

"The needs of schools, therapists and parents to communicate about special needs individuals is intense," said Steve Johnson, founder of iAbida and also the father of an 11 year old son with autism. "Parents and professionals see the need for improved communication and have been turning to iAbida as a centralized location for communication. We are really happy to see users such as Sonya and the Iowa autism community benefit from the use of iAbida. It is provided at no charge for individual users and at nominal rates for organizational accounts."

About iAbida, Inc.
iAbida, Inc. provides an online solution to help schools, parents and others communicate about special needs children - including daily journals, behavior tracking, medication, calendar, diet, photo albums, questions and answers, photo, emergency contact information, etc... The person who opens the account has control over who gets to participate in which areas and each person that posts can make their posting available to everybody or individuals only.

Hundreds of users are now getting the benefit from iAbida's communication platform from public schools, parents to private ABA schools.

For more information about iAbida's software and services, visit www.iabida.com

October 29, 2006

Parents Hold Press Confrence on Barton's Hold Up of CAA

FOR IMMEDIATE RELEASE
THURSDAY, OCTOBER 26, 2006

CONTACTS:
Mara LaViola (214) 387-0889, (972)-358-8230
Kristi Hammer (972) 335-5460

******* MEDIA ADVISORY *******

PARENTS OF CHILDREN WITH AUTISM TO HOLD PRESS CONFERENCE

PARENTS CALL ON HASTERT, BARTON TO LET CONGRESS PASS AUTISM BILL.

Barton Holds Children with Autism Hostage By Refusing to Release the Combating Autism Act for a Vote in the House. Political Gain Outweighs Helping Hundreds of Thousands of Children with Autism.

Frisco, TX – Parents of children with autism will hold a press conference in Richardson on Monday, October 30, 2006 at 11:00 a.m. regarding the status of the Combating Autism Act (Senate Bill 843).

WHO: Families of children with autism

WHAT: Press Conference

WHERE: The Renaissance Hotel at 900 E. Lookout Drive in Richardson

Autism is a neurodevelopmental disorder that is increasing in America’s children at epidemic levels. According to the CDC, 1 in 166 children will succumb to an Autism Spectrum Disorder. Recent research indicates that autism is being triggered by an environmental insult. National leaders are calling for our best and brightest researchers to find out what would make ordinarily normal, healthy children regress into autism. There are now more children with autism than several of the leading childhood diseases combined.

This life long, severely debilitating disorder currently affects millions of children across the country; yet legislation that would provide critical help to those children and their families is being held up by several congressional leaders despite the fact that a majority of the House has co-sponsored the bill. Is this politics as usual in Washington? The Combating Autism Act (Senate Bill 843), which has unanimously passed the United States Senate would, among other things, wage a nearly 1 billion dollar war on Autism over the next five years. The Act would attack Autism on a multiple of fronts: much needed public awareness and early identification, funding research to identify the best medical practices and treatment of Autism, and basic biomedical research. Yet, despite unanimous support in the Senate and over 220 co-sponsors in the House of Representatives, Speaker Dennis Hastert, R-Ill., and U.S. Rep. Joe Barton, R-Ennis, are refusing to let the House vote on this critical legislation. Their refusal to act is essentially robbing children with Autism of their voice in the political process.

Come hear parents explain how the Combating Autism Act is essential if we are to rescue an entire generation of children already at risk of being lost forever to this devastating disorder.

Listen as families explain how this legislation will help them meet the tremendous challenges they face by caring for children with Autism. These parents and their children will be gathered in front of the Renaissance Hotel in Richardson, where Speaker Hastert is scheduled to present a key note address at a fundraising event at noon. Families will call on Speaker Hastert and Congressman Barton to stop holding their children hostage to politics and let the House vote on the Combating Autism Act.

CAN!

First go get a box of tissues. I am not kidding.


World's Strongest Dad.
Sports Illustrated
By Rick Reilly

I try to be a good father. Give my kids mulligans. Work nights to pay For their text messaging. Take them to swimsuit shoots.

But compared with Dick Hoyt, I suck.

Eighty-five times he's pushed his disabled son, Rick, 26.2 miles in Marathons. Eight times he's not only pushed him 26.2 miles in a Wheelchair but also towed him 2.4 miles in a dinghy while swimming and Pedaled him 112 miles in a seat on the handlebars--all in the same day.

Dick's also pulled him cross-country skiing, taken him on his back Mountain climbing and once hauled him across the U.S. On a bike. Makes Taking your son bowling look a little lame, right? And what has Rick done for his father? Not much--except save his
life.

This love story began in Winchester , Mass. , 43 years ago, when Rick Was strangled by the umbilical cord during birth, leaving him Brain-damaged and unable to control his limbs.

"He'll be a vegetable the rest of his life;'' Dick says doctors told him And his wife, Judy, when Rick was nine months old. ``Put him in an Institution.''

But the Hoyts weren't buying it. They noticed the way Rick's eyes Followed them around the room. When Rick was 11 they took him to the Engineering department at Tufts University and asked if there was Anything to help the boy communicate. ``No way,'' Dick says he was told. ``There's nothing going on in his brain.''

"Tell him a joke,'' Dick countered. They did. Rick laughed. Turns out a Lot was going on in his brain. Rigged up with a computer that allowed Him to control the cursor by touching a switch with the side of his Head, Rick was finally able to communicate. First words? ``Go Bruins!'' And after a high school classmate was paralyzed in an accident and the School organized a charity run for him, Rick pecked
out, ``Dad, I want To do that.''

Yeah, right. How was Dick, a self-described ``porker'' who never ran More than a mile at a time, going to push his son five miles? Still, he Tried. ``Then it was me who was handicapped,'' Dick says. ``I was sore For two weeks.''

That day changed Rick's life. ``Dad,'' he typed, ``when we were running, It felt like I wasn't disabled anymore!'' And that sentence changed Dick's life. He became obsessed with giving Rick that feeling as often as he could. He got into such hard-
belly Shape that he and Rick were ready to try the 1979 Boston Marathon.

``No way,'' Dick was told by a race official. The Hoyts weren't quite a Single runner, and they weren't quite a wheelchair competitor. For a few Years Dick and Rick just joined the massive field and ran anyway, then They found a way to get into the race Officially: In 1983 they ran another marathon so fast they made the Qualifying time for Boston the following year.

Then somebody said, ``Hey, Dick, why not a triathlon?''

How's a guy who never learned to swim and hadn't ridden a bike since he Was six going to haul his 110-pound kid through a triathlon?

Still, Dick Tried.

Now they've done 212 triathlons, including four grueling 15-hour Ironmans in Hawaii . It must be a buzzkill to be a 25-year-old stud Getting passed by an old guy towing a grown man in a dinghy, don't you Think?

Hey, Dick, why not see how you'd do on your own? ``No way,'' he says. Dick does it purely for ``the awesome feeling'' he gets seeing Rick with A cantaloupe smile as they run, swim and ride together.

This year, at ages 65 and 43, Dick and Rick finished their 24th Boston Marathon, in 5,083rd place out of more than 20,000 starters. Their best Time? Two hours, 40 minutes in 1992--only 35 minutes off the world Record, which, in case you don't keep track of these things, happens to Be held by a guy who was not pushing another man
in a wheelchair at the Time.

``No question about it,'' Rick types. ``My dad is the Father of the Century.''

And Dick got something else out of all this too. Two years ago he had a Mild heart attack during a race. Doctors found that one of his arteries Was 95% clogged. ``If you hadn't been in such great shape,'' One doctor told him, ``you probably would've died 15 years ago.'' So, in a way, Dick and Rick saved each other's life.

Rick, who has his own apartment (he gets home care) and works in Boston, and Dick, retired from the military and living in Holland, Mass. , always find ways to be together. They give speeches around the country and compete in some backbreaking race every weekend, including this Father's Day.

That night, Rick will buy his dad dinner, but the thing he really wants to give him is a gift he can never buy.

``The thing I'd most like,'' Rick types, ``is that my dad sit in the chair and I push him once.''

And the video is below....

Barton's Meeting with "Parents"

From Kristi Hammer:

Okay guys…Here is a summary of the town hall meeting. I hope it
makes sense…I am pooped, but really wanted to get this in your hands
tonight.

Town Hall Meeting – 6 invited, 6 guests in his office last night.

Barton continues to stick to his position that NIH Reform, if
passed, will cover the same thing as S.843 CAA. This is entirely
untrue. He admitted that NIH Reform has zero provisions for autism
specifically, and no timelines for impacting change. If passed NIH
Reform would keep present levels of funding for diseases "whole" for
3 years" VERY BAD news for us since we aren't getting much now.
There will be $1.4 billion dollars in the first year that will
be "up for grabs" to any disease who can prove their research
worthy. In other words, we continue to compete with the other
diseases…a battle which we have consistently lost. Nothing changes
for us.

He also confirmed that under no circumstances will he release CAA
for vote (neither the Senate or House bills). Period.


After much debate, he told the participants (12, and maybe ½
parents), that if they would "bring him some language that would be
suitable to us" he would "work with us to get something done on
it" Here are the caveats to this. I can pretty much guaranty that
whatever local parents drafted, and he agreed upon (if that ever
happened) would be insufficient to the Autism community and they
would kill the bill themselves, and start over. Then the autism
community could look like the "unreasonable ones", and he would be
off the hook. Also, this proposed language, if used, would be part
of his NIH Reform bill. There is ZERO possibility that NIH Reform
could pass in the lame duck session. Not because no one wants it,
but there is simply not enough time, and there is no companion
Senate Bill.

So….no matter what, left in Barton's hands, the Autism provisions
will die in December. He won't release CAA, and although he claims
he might put a few autism provisions in NIH Reform (if the
participants in the town hall write it), it doesn't matter because
NIH Reform won't have a chance to pass, and the autism community
wouldn't accept it.. Either way we lose, and I think that is the
intention.

The bottom line is, at this point, only Hastert, or the Discharge
Rule could move this forward this year. We will get this done next
year, if the Dems take the house, but it will be at least another
52 weeks, at a cost of 36,000 children being newly diagnosed, and
the rest of us put off for yet another year over one man's
politics/ego. We explained to him what this delay meant in terms of
the human impact, and he was unmoved.

There were a number of people there last night who thought Barton
was "very sincere" in his desire to work with us. If you are on
this list and reading this, please don't buy into that.. I can't
say it enough. The autism community will not accept anything but
S.843, and he would be using you to get some language that he could
take to the autism community, so that they would be forced to turn
it down, and they would be the bad guys…not him. Don't let that
happen to us.

Autism Mom Discusses TV Researcher

Defending the Indefensible

Dr. Mike Waldman is responding as defensively as a child caught in a huge lie or stealing from his local drug store. He would rather defend his indefensible lunacy and junk science than admit to his huge error in judgment and reason. He is now caught up in a huge firestorm that even he probably had no idea he was getting into, by proposing his ignorant hypothesis. He now seems incapable of the wherewithal or common sense to simply extricate himself.

But Waldman may have made the most damaging statement to date when he said, "PARENTS SHOULDN'T BE DECIDING THE DIRECTION OF RESEARCH". Again Waldman demonstrates his ignorance of an issue that he came in on too late, too uninformed, too naive to even be a participant in the debate.

He is unaware that many of the most active parents in this debate ARE doctors and scientists. He also seems unaware as he jumps in at the 11th hour and decides to dictate what and how this epidemic isstudied, that if it wasn't for parents no research at all would have been done, besides the easily flawed epidemiological studies released and paid for by the CDC, clearing themselves as the poisoners of an entire generation of children. How dare Waldman come along after nearly two decades of our children being written off, neglected, denied they even existed, dropped by insurance companies or refused payments for autism treatments, miss-handled by ill-prepared school systems and early intervention and neglected by their own governments at every level. Parents are the only ones that have given a damn about these kids for more than 20 years. Parents have mortgaged their lives to try to afford the most promising treatments and therapies that might make a difference in their child's outcome because no one else is offering a thing. They have single-handedly raised the public awareness to a national crisis and epidemic. Parents alone have driven the train of research, political action, support groups, legislative action,insurance reform, biomedical treatment organizations nationwide that are recovering children from this devastating disease.

So all you parents that have dedicated your life to Autism, your own child as well as all others and those children yet to come, just back off now because Mr. TV Man is here, and all the answers will be forthcoming. Stop your fundraising efforts, stop your boards that are distributing research funds for real scientific studies, stop your political action committees, stop your parent support groups, stop your biomedical conventions, stop your dialogue with real doctors and scientists and sit back in your easy chair at home because, Mr. TV Man is here, Economics professor extraordinaire, newly professed expert on Autism is now going to dictate to parents,
doctors, scientists, the nation, on how the Autism research and debate should be conducted. He alone will tell us what is valid research and who has a right to participate? He will decide who should be taken seriously and who should not. "Never Fear, Mr. TV Man is Here".

Mr. Waldman, you are not going to dictate to parents. Parents are Autism. Parents are the only support these children have. Parents are the funders of research, they are the soldiers of Autism legislation and insurance reform, they are the educators of their own children, the legal experts on IDEA and FAPE, they are their children's nutritionists, doctors, nurses, educators, and most of all they are their children's advocates in a world that is more and more hostile to not only our children but to us too. You, Mr. TV Man have crossed a line that is unforgivable. You dare to dictate
to and exclude parents from a process that they have carried alone. We will dictate research because we are the only ones funding it and soliciting the research. You come along with your bizarre precipitation/cable TV/Autism theory and suddenly feel you have the right to exclude the only people who have given a damn about our kids from day one.

Parents are deciding the direction of research because few listen to the only people that know these children inside and out. We witnessed our children's decline and we had to take it into our own hands to have our concerns taken seriously. All the experts have told too many of us to institutionalize our children, that they would never talk, that they are severely mentally retarded, there are no treatments, there is no hope. Yet on our own, with the help of sympathetic and compassionate researchers, doctors, and professional that truly listen to parents, many of us across the nation have fixed our children's problems. Experts ignored our children's' serious medical problems as if because they had Autism it was ok that they suffer from severe intestinal, immune system, and gut disorders. We fixed those problems too. We have attacked Autism from multiple levels and approaches and our children are recovering. We can thank ourselves for that gift. What are you offering Mr. TV Man? I never owned a TV, it didn't cause my child's autism.

That is the problem. Mr. TV Man may be published in medical journals eager to highlight anything that takes the focus off of vaccines. But he will never ever gain the support of dedicated and educated parents who are the driving force behind all things Autism. And we have that right, because medicine, government, insurance, educational institutions, old-style non-profits, all told us long ago that we don't matter, our children don't matter, they are expendable, to be institutionalized and forgotten. Out of love for our children we have changed all that and continue to burst open-wide the doors that hold the mysteries to our children's problems.

Mr. TV Man seems unaware of how savvy these parents are and educated on the complex and intricate issues of Autism, far more educated on this very issue than him. The whole issue seems too simple to him, he does not even realize the level of scientific sophistication that parents have had to reach to treat and cure their own children. It is Mr. TV Man who has no right to jump in and start dictating the Autism research agenda in a blathering attempt to defend the indefensible. The research and studies have gone so far beyond his simplistic thinking that he seems incapable of even comprehending the complexity of it. The most brazen part of this man's ego is how he came to the conclusion that as an Economist and professor, he is in a position to hold himself above parents. But we too are researchers, doctors, lawyers, statistical experts, psychologists, teachers, professor, politicians, etc.

Mr. Waldman still refuses to address the medical issues of Autistic children and how TV might bring about changes in the immune system and biochemistry of these kids. It's better to ignore what could not possibly fit into his simplistic and unproveable theory.

As he digs his grave of ignorance deeper and deeper I suspect his attacks on parents will only grow more vitriolic, more desperate, as he tries to hang on to his newfound fame and the attention that it is bringing him. In the mean time the real research will continue, funded by parents, and the organizations founded and run by
parents. And we will continue to be the only ones that are serious about getting to the root of this epidemic and the cause of our own precious children's decline into this devastating disease as well as their recovery from it. Mr. TV Man is not adding anything substantive or beneficial to the debate or to real science and he should step out gracefully now before causing further embarrassment to himself and the once prestigious institution of Cornell University, however neither of these seem to be of great concern to him.

Kendra Pettengill

J.B. Handley: Hey CDC, You Forgot to Count Our Son

Hey CDC, You Forgot to Count Our Son
By J.B. Handley
www.generationrescue.org

I'll never forget the late fall of 2003. It felt like every day on the news I was reading another story about the flu outbreak that was killing children in Colorado and other places, I can't quite remember where.

We were panicked. With two young small boys, death from flu was horrifying, and the news also explained how limited the supply of flu vaccines was around the country. I still remember the day I came to work with the sole focus of finding flu vaccine somewhere, anywhere to help my babies. After dozens of calls, I felt lucky enough to
happen upon a doctor with some extra vaccines who was ready to see our boys immediately. Whew, bullet dodged, I figured.

Our youngest son, Jamison, was the highest priority. Fourteen months old, he was sick a lot more than his four year old older brother. Jamison was on antibiotics all the time, and he had a lot of eczema. Could he handle the flu? It seemed like it would really be tough on him – he was at risk, he needed this shot.

I couldn't make the shot appointment, I was busy. As usual, my wife soldiered on without me and endured the cries from her two warriors who got vaccinated. Jamison had been particularly brave about the whole thing. How great, we thought! He's safe now!

Our Christmas video from the fall of 2003, just a couple weeks after the first flu shot, shows a happy and engaged Jamison, very excited about all the presents in our living room, and responding and watching his older brother celebrating. A happy kid, in our world, engaged. A part of the family.

January came. Flu deaths were still in the news, although not quite as often. The flu shot was actually a two-part shot that year. Get the flu shot, come back in 4 weeks later for a booster. That's what they told us. We decided to skip the booster for our oldest son, but we knew Jamison really needed it. Dutifully again, we made sure Jamison got that second shot.

**

A study came out this week in the Journal of the American Medical Association. It's called: "Safety of Trivalent Inactivated Influenza Vaccine in Children 6 to 23 months old."

It basically says the flu shot is perfectly safe for kids. It also says a couple of interesting things.

One. "Financial support for this study was provided in full by the Centers for Disease Control and Prevention."

Two. "Our primary outcome measure was any medically attended event associated with trivalent inactivated influenza vaccine in a 14-day risk window after vaccination."

Oh, and there's a third thing it says, too. It's at the end of the study. It says of the nineteen authors, nine have financial ties to vaccine manufacturers. And, four more of the authors work at CDC. Here's one of nine examples of the financial disclosure:

"Dr. Marcy reports working as a consultant for Sanofi Pasteur, Merck, GlaxoSmithKline, MedImmune, and Abbott, and serving on the speakers' bureau for Sanofi Pasteur and GlaxoSmithKline." (Note: Sanofi Pasteur is the leading manufacturer of flu vaccine.)

I don't know, Dr. Marcy, I just don't know, can I trust you to tell me the truth if the vaccine hurt our kid?

Oh, and they also wrote this, towards the end of the study:

"It is also important to note that there is scant data on the efficacy and effectiveness of influenza vaccine in young children."

**

Like many parents trying to understand what happened to their child, we re-traced Jamison's steps back to that fall and Christmas of 2003. The decline seems to have begun sometime in January, soon after the second flu shot. He began to play alone. His words stopped. He started running back and forth along walls and fences. For hours.

Like many parents, it took us a while to figure out what was happening to our son. By March, we thought something was wrong. By April, we began to panic a little as his behaviors got worse and he seemed to always be sick. By May, we happened upon this test called the M-CHAT, and we realized our son met the criteria for autism.

Jamison didn't make the JAMA study. He didn't go to the doctor or hospital in the 2 weeks after he got the flu shot. His medical condition today, autism, is not one of the outcomes the study authors looked for.

In 2003, when Jamison got his flu shot, I didn't know that the CDC had released a 1999 statement saying:

"Because any potential risk is of concern, the Public Health Service, the American Academy of Pediatrics, and vaccine manufacturers agree that thimerosal-containing vaccines should be removed as soon as possible. Similar conclusions were reached this year in a meeting attended by European regulatory agencies, the European vaccine
manufacturers, and the US FDA which examined the use of thimerosal-containing vaccines produced or sold in European countries."

I also didn't know the American Academy of Pediatrics released a statement in 2001 saying:

"Mercury in all of its forms is toxic to the fetus and children and efforts should be made to reduce exposure to the extent possible to pregnant women and children as well as the general population."

Jamison's 2 flu shots contained mercury. 25 micrograms each. I didn't know that. I do know that every time I hear the word "flu vaccine" I get sick to my stomach. How come CDC or AAP didn't make a point of telling me flu vaccine in 2003 still contained mercury? It would have impacted our decision.

I wish the thirteen study authors with clear conflicts could come to my house, watch my son's videotape, and review his medical tests. I wish all of them would have spent their time differently. Four years passed between the CDC's press release and Jamison's vaccine. Did the mercury really need to be there? And, why is it still there today, seven years later?

CDC, our son is not part of the data in your study. But he should be.

Oct 26, 2006

Awareness for A Documentary by One Of Our Own - Don King

Laird crosses channel for Autism awareness documentary
Oct 26, 2006 / Community
All Islands, Kauai, Oahu
by Katherine Fisher- Hawaii Health Guide.com


What could inspire two of the world's best watermen, Laird Hamilton and David Kalama to take a week and go on a 500 mile marathon across Hawaii, traveling by bike and surf board from South Point on the Big Island to the Kauai’s Kilauea lighthouse, the northernmost point in the main Hawaiian Island chain?

The purpose of the marathon odyssey is to raise funds to promote a documentary film about autism made by Don King and his wife, Julianne Yamamoto King. The film “Beautiful Son” is about the Kings’ son Beau, 6, who has autism.

It was Hamilton's idea to undertake the seven-day feat to publicize a documentary, "Beautiful Son," produced by friend and underwater cinematographer Don King about his autistic 6-year-old son, Beau.

Don King said he is hoping to raise $40,000 to distribute the nonprofit film to a wider audience. King's wife, Julianne Yamamoto King, is director and producer of the film about their quest to "recover Beau from autism."

Aquatic legends, Hamilton, 42, and Kalama, 41, have been tow-in surfing partners for the past several years.

Hamilton constantly tests his physical endurance. His latest adventure in May entailed a 426-kilometer crossing between London and Paris in two days, biking and paddling.

King said the hardest part of the journey is paddling from Oahu to Kauai Sunday and Monday, as "only a few people have done this. ... It's a really rough channel." The Alenuihaha Channel crossing between the Big Island and Maui is also grueling, he said. Along the way the pair encountered winds, nigh

"I was really touched by Laird's generosity for offering to do this crossing as a fund raiser for the film. While he and David Kalama did it together, I followed as a film maker and saw firsthand the amount of effort it took to undertake the challenge, I went to thank Laird, and Laird just told me: "This amount of effort is what autistic families are dealing with all the time."

King has filmed Hamilton, for commercials and a film that won for best documentary short at the 2005 Maui Film Festival. King, best known for his underwater cinematography, currently shoots for the popular TV series "Lost."

The Kings are hoping to raise public awareness through their film as well as funds for research to help find a cure for the disease.

Father and film maker Don King said the Big Issues around autism include the facts that has become so common. The incidence of autism has increased from 1 in 10,000 in the 1970s to 1 in 150 today, an increase of over 6,000% a huge increase in the last twenty years King said Beau was normal, happy and bright his first two years of life, but by the time he turned 3, his son was not even making eye contact -- "the light went out."

Autism is a neurological disorder that severely affects development according to the Centers for Disease Control and the American Academy of Pediatrics.

Considering how common Autism has become (more then childhood leukemia, diabetes and cancers combined) yet receives less attention then other childhood diseases. "It is imperative as a society that we figure this out right away disorder that affects family and society the cost of educating and taking care of autistic children. It costs about 3.2 million dollars over course of lifetime for care of autistic children according to Harvard. Autism occurs by the age of three. There is some kind of window of vulnerability in development.

"For Beau we have tried biomedical intervention after seeing the success with some kids are having with special diets, heavy metals detox. Beau did receive mercury-containing vaccines. He appeared to be developing normally but he also swallowed mercury amalgam filings when he was about 2.5 years. He has tested high for body burden mercury.

Beau speaks and understands but cannot hold a conversation. It is the distance between Beau and the rest of the world that burdens their heart most heavily, King said. Thankfully, he is not prone to violent outbursts -- "he's a very sweet kid with very few behavioral problems," King said.

With my own son, there have been a lot of little things that have helped, like seeing how well he responds to behavior therapy. It is critical the autistic children receive Applied Behavior Analysis but families are struggling to get these services.

A lot of parents have had success with special diet and so have we, by eliminating foods containing casein (dairy) Some kids respond well but this is not part of a standard treatment protocol. We need more study in this area, and have this (dietary and environmental causes) be part of doctors training. In addition to genetics, research and focus should be on possible external triggers and treatment.

One theory is that autistic children are less able to detoxify themselves making them more vulnerable to effects of accomulated toxins.

But the couple does not want to just "tolerate it (autism)," he said. For a parent to be told there is no established treatment for something "way too common" is unacceptable to him -- "there's got to be something. I wish we knew more," King said.

"It is discouraging the at doctors would not take a precautionary approach to mercury. Especially when your child regresses, and you want to bring them back, there has to be a way to bring them back, so when you run into the old theory of autism being untreatable and you want the best for your child and you want the success story. The government has been dragging its feet because of the controversy over Mercury. Mercury is a Nero toxin and should not be used in childhood vaccines. Most flu vaccines contain mercury, but it is also available in a mercury free version. Whenever there is a mercury free vaccine option that is the one we should use.

"My wife and I tried last year to put into legislation to ban mercury in vaccines in Hawaii, it passed but was vetoed by the governor"

DONATIONS SOUGHT

Tax-deductible donations to promote the documentary film "Beautiful Son" can be made at www.beautifulson.com or mailed to Swell Cinema, 182 Grand View Ave., San Francisco, CA 94114.

Hamilton says through this fundraiser he expects to "see, feel, and experience different things this week. Hopefully we get people to realize how lucky they are to be healthy."

Med Page: Alternative Treatments Endemic Among Autistic Kids

AACAP: Alternative Treatments Endemic Among Autistic Kids
By Crystal Phend, Staff Writer, MedPage Today
October 27, 2006

SAN DIEGO, Calif., Oct. 27 -- Among autistic children and adolescents, special diets, vitamin supplements and a variety of complimentary and alternative medicine strategies are nearly universal approaches, reported researchers here.

Almost every autistic patient (93.8%) surveyed received some form of nutritional or dietary intervention, said W. Ben Gibbard, M.D., M.C.S., of the University of Calgary in Alberta, in a presentation at the American Academy of Child and Adolescent Psychiatry meeting.

Most had tried many different treatments-the average number used was 9.6-across a wide range of products and strategies encompassing 173 separate types.

The most helpful appeared to be an additive- and preservative-free diet (more than 80% of those who tried it called it helpful), a chocolate-free diet (70%), and herbal remedies (71.4%).

Among the most commonly used treatments were multivitamins and gluten- or casein-free diets.

"Clinicians should inquire about use of complimentary and alternative therapies in their patients," Dr. Gibbard said in an oral session. He suggested referencing specific groups of treatments ("Do you use any special supplements or diet?") while questioning families in a nonjudgmental and sensitive manner.

The investigators surveyed 176 families of children with an autism spectrum disorder who were living in southern Alberta. The 22-page survey was mailed to the families and the parents checked off therapies they had ever tried, past or present, and rated how helpful each had been.

The mean age of the autistic children was 8.9 years and 83.5% were male. Classic autism was the most common diagnosis for the patients (52.8%) while 6.3% also had epilepsy and 2.8% had a genetic condition.

Diet or nutritional supplementation was tried by 45.5% of the families with an average of 5.2 different types of these used by each family (range 1 to 28).

The researchers reported:

* 17.1% tried some kind of omega fatty acid, with 64.3% rating it helpful,
* 10.2% tried an omega-6 fatty acid, with 61.1% rating it helpful,
* 10.2% used an omega-9 fatty acid, with 66.7% rating it helpful,
* 12.5% tried dimethylglycine, with 54.5% rating it helpful, and
* 6.3% tried Eflax oil, with 36.4% rating it helpful.

Dietary therapies were tried by 37.6% of the families. The findings were (percentage tried, percentage rated helpful):

* Gluten-free diet (23.3%, 61.0%),
* Casein-free diet (21.6%, 60.5%), and
* Lactose-free diet (17.6%, 45.2%).

Vitamins and minerals were tried by 63.1% of respondents, making it the most popular category. Nearly 40% had tried a vitamin or mineral supplement besides a multivitamin. The mean number tried was 3.2 (range 1 to 20). The researchers reported:

* 49.4% had tried a multivitamin with 35.6% reporting it helpful,
* 16.5% used an oral calcium supplement with 51.7% reporting it helpful,
* 14.8% tried oral vitamin C with 53.8% reporting it helpful,
* 16.5% had tried any magnesium supplement, and
* 14.2% used any vitamin B6 supplement.

Natural therapies had been used for 40.3% of the children (mean 2.0 different therapies). The most common were:

* Herbal remedies (11.9%, 71.4% rated as helpful),
* Evening primrose (9.1%, 31.3% rated as helpful), and
* Naturopathy (7.4%, 69.2% rated as helpful).

Dr. Gibbard said the findings may have affected by selection biased as with any postal survey. However, he said the study highlights the need for safety and efficacy data on these treatments that patients are clearly using.

While some may dismiss the helpful ratings as placebo effect, these rating may be better treated as open-label or case reports that can point research in the right direction, said session discussant Margaret D. Weiss, M.D., Ph.D., of the University of British Columbia in Vancouver.

"If we've got placebo effects like that in our stimulant trials, stimulants would be off the market," she said.

The Age of Autism: Many, Many More

The Age of Autism: Many, many more
By DAN OLMSTED
UPI Senior Editor

WASHINGTON, Oct. 16 (UPI) -- The debate over the cause or causes of autism has been hung up for years on a point that should have been settled by now: whether the rate is in fact increasing.

This column long ago concluded that, yes, the autism rate has risen dramatically over the past couple of decades. What's more, the disorder seemed to arise out of nowhere starting about 1930.

Both those points are controversial, to say the least. If in fact autism went from essentially zero in 1930 to 1-in-every-166 kids today, the prime suspect would be some new harmful exposure, not merely better recognition of a genetic, highly heritable disorder.

The issue can quickly get complicated: How do you define autism? How have the diagnostic boundaries changed? Is an autism diagnosis being substituted for mental retardation because it sounds less devastating or more, well, fashionable?

But all this is not as hard to untangle as some parties would have you believe. In 1943 a Johns Hopkins child psychiatrist named Leo Kanner identified the syndrome in a landmark paper, "Autistic Disturbances of Affective Contact." The 11 case histories he described among children born starting in 1931 were remarkably similar -- and "markedly and uniquely" different from anything previously reported, Kanner said.

Ultimately, a broader spectrum of pervasive developmental disorders was included -- from the milder Asperger's to Rett's Syndrome, which affects girls, to Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).

The severe form first described by Kanner came to be known as "full-syndrome," "classic" or simply "Kanner autism."

That easily identifiable disorder is what we want to compare. I've suggested the current incidence of Kanner autism is somewhere between 40 to 60 children per 10,000; when you add in the other disorders on the spectrum, it rises to 60 to 80 per 10,000.

Of course, there is debate and uncertainty -- but within fairly tight parameters. Dr. Deborah Hirtz of the National Institute of Neurological Disorders and Stroke -- part of the National Institutes of Health -- estimates that about 10 to 30 children per 10,000 have classic autism today, and a combined total of 30 to 60 have one of the pervasive developmental disorders.

That's slightly lower than my numbers, but on the same order of magnitude.

Too bad, some say, we can't match those up with reliable figures from before 1980; then we would know if we're facing a real increase. The most frequent objection is the lack of a large, pre-1980 "prospective" study -- one that followed thousands of kids and recorded which ones developed the classic signs of autism. That would be a fair basis for comparison.

I've recently come across a 1975 study that does exactly that, although it was not the purpose of the research. The study was designed to look at bleeding during pregnancy as a risk factor for autism and childhood psychosis -- and did find a correlation. To do so, it examined the computerized records of 30,000 kids -- a huge sample -- born between 1959 and 1965 at 14 university-affiliated medical centers. All the children got several neurological, psychological and speech and hearing exams by age 8.

Here's the key statement: "From this group 14 were selected as conforming to the syndrome of infantile autism."

That translates to 4.7 kids per 10,000, way lower than any measure of today's rate. The researchers wrote that although they "make no claim to having identified every autistic child among the 30,000 children, the rate of 4.7 per 10,000" exactly matched another well-regarded study, "leading us to believe that most such children were included."

But what about kids who back then were mistakenly labeled schizophrenic or had other "pervasive" disorders that now would land them on the autism spectrum? Well, the researchers studied the records again and, this time, identified "additional children who, although not having the classical syndrome of infantile autism, were apparently psychotic. Six such children were found, all labeled by at least one observer as severely disturbed, psychotic-like, autistic, or childhood schizophrenic."

So let's include them in our "autism spectrum." That gives us 14 classically autistic kids, plus six more with some sort of severe developmental disorder, for a total of 20 kids out of 30,000.

Again, the math is simple -- that's just 6.7 kids per 10,000, far below even the low-end estimate of 30 per 10,000 for all the spectrum disorders today cited by the NIH's Hirtz.

The study was published in the highly credible "Journal of Autism and Childhood Schizophrenia" in 1975. And get this: "Children with infantile autism and childhood psychosis were identified by the National Institute of Neurological Disease and Stroke Collaborative Pre-Natal Study." That's Hirtz's institute.

We're talking apples and apples, and a lot more of them today than 35 or 40 years ago. The implications are as disturbing as they are (or should be) obvious.

Supreme Court to Hear Autism Ed Case

High court to hear of autism
Posted 10/27/2006 2:58 PM ET

WASHINGTON (AP) — The Supreme Court agreed Friday to consider an appeal from an autistic child and his parents, who want to sue over his school accommodations without hiring a lawyer.

Jeff and Sandee Winkelman say they cannot afford an attorney to argue their court case against the Parma, Ohio, school district over the education of their son, Jacob.

The 6th U.S. Circuit Court of Appeals ruled that the parents had to find a lawyer, although other federal courts have ruled differently in cases under the Individuals with Disabilities in Education Act.

The Bush administration urged justices to take the case, saying Congress clearly intended parents to be able to represent their children in such court proceedings.

The Winkelmans contested Parma's plan to educate Jacob at a public school. They wanted the district to pay for his $56,000 yearly enrollment in a private school that specializes in educating autistic children.

Whether Jacob should have private schooling at public expense is not before the Supreme Court, only his parents' right to go into federal court without a lawyer.

The Winkelmans have spent about $30,000 in legal fees since first contesting Jacob's treatment in 2003. Jeff Winkelman has taken a second job while his wife has researched previous court rulings and written her own filings.

The case number is Jacob Winkelman v. Parma City School District, 05-983.

Top 10 Terrific Traits of Autistic People

Griffin's mom Lora shares some of the great things about our kids:

http://griffinblaise.blogspot.com

October 28, 2006

BMJ: Influenza Vaccine Programs May Be Pointless

Article in BMJ discounts the usefulness of the flu vaccine. Here is the BMJ article preceeded by Medical News Today's summary of it:

Influenza Vaccine Programs May Be Pointless
Main Category: Flu / SARS News
Article Date: 28 Oct 2006 - 0:00am (PDT)
Written by: Christian Nordqvist
Editor: Medical News Today

Influenza vaccination programs, which cost nations millions of dollars every year, could be a waste of time and money, says Dr. Tom Jefferson, Cochrane Vaccines Field, Rome, Italy. Jefferson says he hopes his findings will make North American and European taxpayers wonder whether the effort and expense are justified.

You can read about his findings in The British Medical Journal (BMJ), October 28.

In this study, Jefferson examined all published papers worldwide that reported on the effects of inactivated vaccines (vaccines with dead viruses). In other words, he studied the reviews of all studies. He concluded that flu shot campaigns have either no effect, or a very negligible effect, on the number of hospitalizations, work/school time lost, complications from flu, or death from flu.

Jefferson said "I looked at the evidence described by systematic reviews and confronted it with policy and I found that there is a massive gap. Almost none of the benefits that these policy documents list are actually given by inactivated vaccines or, if they are, they are given in slighter measure." He said he is not sure why this is so. He suggested it could be a result of inadequate surveillance systems, and/or diagnosing too many influenza-like respiratory illnesses as flu (when they are not). He added that "In most surveillance systems, you actually have an almost year-round epidemic which, in fact, is not influenza. It's caused by other agents." He criticized many of the studies he looked through, saying they were weak.

According to official figures (CDC), approximately 200,000 Americans get flu so badly each year that they have to be hospitalized - about 36,000 people die each year as a result of catching flu in the USA.

Jefferson said he was surprised to see such a large gap between vaccination campaign policy and evidence of its effectiveness.

"Influenza vaccination: policy versus evidence"
Tom Jefferson
BMJ 2006;333:912-915 (28 October), doi:10.1136/bmj.38995.531701.80



The BMJ article:

Public health

Influenza vaccination: policy versus evidence
Tom Jefferson, coordinator1

1 Cochrane Vaccines Field, Anguillara Sabazia, Roma 00061, Italy jefferson.tom@gmail.com

Each year enormous effort goes into producing influenza vaccines for that specific year and delivering them to appropriate sections of the population. Is this effort justified?

Viral infections of the respiratory tract impose a high burden on society. In the last half of the 20th century, efforts to prevent or minimise their impact centred on the use of influenza vaccines. Each year enormous effort goes into producing that year's vaccine and delivering it to appropriate sections of the population. Here, I will discuss policies on the use of inactivated vaccines for seasonal influenza; the evidence for their efficacy, effectiveness, and safety ("effects"); and possible reasons for the gap between policy and evidence.

Policies

Every vaccination campaign has stated aims against which its effects must be measured. The US Advisory Committee on Immunisation Practices produces a regularly updated rationale for vaccination against influenza.1 The current version identifies 11 categories of patients at high risk of complications from influenza (box).

The rationale rests on the heavy burden that influenza imposes on the population and the benefits of vaccination. For example, reductions in cases, admissions to hospital, mortality of elderly people in families with children, contacts with healthcare professionals, antibiotic prescriptions, and absenteeism for children and household contacts are the main arguments for extending vaccination to healthy children aged 6-23 months in the United States.2 Canada introduced a similar policy in 2004.3 Less comprehensive policies recommending vaccination for all people aged 60 or 65 and over are in place in 40 of 51 developed or rapidly developing countries.4 On the basis of single studies, the World Health Organization estimates that "vaccination of the elderly reduces the risk of serious complications or of death by 70-85%."5 Given the global nature of these recommendations, what type of evidence should we expect to support them and what does available evidence tell us?4

Which evidence?

When considering the best evidence for vaccination we must take into account the unique epidemiological features of influenza viruses and the rationale for immunisation. The incidence and circulation of seasonal influenza and other respiratory viruses vary greatly each year, each season, and even in each setting. A systematic review of the incidence of influenza in people up to 19 years' old reported a seasonal variability of 0-46%; during a five year period the average incidence was 4.6% in this age group. During a period of 25 years the incidence was 9.5% in children under 5.6 Because of this variability and lack of carryover protection from one year's vaccine to the next,7 especially if the virus changes its antigenic configuration, single studies reporting data from one or two seasons are difficult to interpret. Single studies are also not reliable sources for generalising and forecasting the effects of vaccines, especially when numbers are small. They introduce further instability into already problematic forecasting. Additional limitations to our forecasting ability are imposed by our use (and misuse) of studies assessing the effects of influenza vaccines. Although the effect assessed depends on the aims of the particular campaign, most concentrate on serious effects (such as pneumonia or death) and person to person transmission (table 1). Field efficacy studies are only relevant when viral circulation is high, but no one can forecast with precision the impact on next year's influenza.