I am Phyllis Wheeler, mother of two kids with Asperger's: "Mike" and "Shannon."
Nurturing Your Asperger's Child, an ebook by Phyllis Wheeler
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Posted By Phyllis on July 2, 2010
If Grandma is having some trouble figuring out what to cook for gluten-free grandchildren, you might send her a copy of this ebook, made by just such a grandma. The author is one of my homeschool publisher friends, and I think it looks very useful. It has 45 pages, and it’s only $3! Grandma might learn something about substituting in regular recipes, too. How can you lose?
Posted By Phyllis on June 30, 2010
Parents of kids with Asperger’s know their kids get very few, if any, invitations to come over. My Aspies are no exception to this rule.
Mike, age 17, has gotten an invitation to go with his brothers to their friend’s vacation house 10 hours’ drive away. They will stay for a week. I still can’t get over it. The friend specifically invited him along with his “neurotypical” brothers.
We explained to Mike that he can’t be his normal inflexible self. He has to go and hang out with the guys in the rowboat or on the bicycles, hardly his preferred activities. Does he really want to go?
I think he realizes how special this is. He wants to go.
What a long way he has come in just 2 1/2 years!
Photo credit: http://www.flickr.com/photos/24949967@N08/3768819047/
Posted By Phyllis on June 12, 2010
Beatrice Golomb, MD, PhD, is adding herself to the ranks of those who question the conclusions being drawn by modern medical research. The issue she underscores: multiple conflicts of interest tend to distort results.
In a recent interview with Dr. Joseph Mercola of Mercola.com, she described some of the situations she has identified which trouble her. Golomb is an associate professor of medicine and family medicine at University of California-San Diego.
Golomb is a researcher on statin drugs who wanted to set up a trial independent of the drug companies. The only way to do that is to ask NIH for money for the trial. But NIH insisted that the application involve asking the drug company to provide the drug for free. NIH didn’t want to pay for the drug. So the research could not be independent, said Golomb.
Not only do the drug companies fund part or all of every drug study, but they put pressure on the journals to publish articles favorable to them. It’s financial pressure: the drug companies pull their advertising if an unfavorable article might be published, and the advertising is what funds the magazine. Favorable articles, on the other hand, produce plenty of revenue to the magazine in the form of copyrighted copies of the articles to be distributed by drug sales people to doctors, charges Golomb.
Golomb was looking at a particular issue involving statin drugs. Favorable studies were published, but unfavorable ones were not, skewing the apparent usefulness of the drug. In fact, the effect was so pronounced that when the unfavorable results were factored in, the effectiveness of the drug went from the reported 90 percent down to just 50 percent. “That’s the difference between unanimity and a coin toss,” said Golomb.
Mercola, writing up the interview, mentions Paul Offitt, the vaccine inventor and researcher who has been critical of those who suspect vaccines may play a part in autism. Offitt advocates accepting all the medical journals have to say, accepting some illogic in the process as I have detailed in previous posts.
Mercola also said,
It’s virtually impossible to expect a publicly traded pharmaceutical company, which has a major obligation to its stockholders, to simultaneously have the patient’s best interest at heart. As Golomb says, the two are fundamentally incompatible. And yet this is THE source of the vast majority of the funding for all our science-based evidence.
Source: http://articles.mercola.com/sites/articles/archive/2010/06/12/beatrice-golomb-interview.aspx
Posted By Phyllis on May 25, 2010
The Wall Street Journal today ran a story on the U.K.’s decision to renounce Andrew Wakefield, a doctor who raised questions about vaccination possibly causing autism.
Wakefield’s study has been the subject of a three-year hearing in front of Britain’s General Medical Council. The council found Wakefield guilty of “serious professional misconduct” and struck his name from the U.K.’s medical register.
At issue was a small study, published in 1998 in The Lancet, describing 12 “previously normal” children with serious gastroentestinal problems. Some were autistic as well. According to the Journal, the paper concluded in this way:
“In most cases, onset of symptoms was after measles, mumps and rubella immunization. Further investigations are needed to examine this syndrome and its possible relation to this vaccine.”
Now, I think these guys in the U.K. are reacting pretty strongly to such a mildly worded suggestion at the end of Wakefield’s paper. (As it happens, I believe, further research has found no link between the measles virus in the MMR vaccine and autism.)
Goes to show how political this vaccination question is.
Posted By Phyllis on May 20, 2010
Today I attended a support group meeting in St. Louis for parents of autistics who are using the Yasko protocol on their kids. The group is run by an occupational therapist with an interest in advising families.
The Yasko support group draws several women from western parts of Illinois, as well as others from the St. Louis area. Most of those who came take their kids to see an DAN! doctor and allergist in the Kansas City area, but they also are using supplements and advice from the Yasko protocol. Those who had been using the Yasko/DAN! protocol for a while were reporting positive results.
We had an interesting discussion, that’s for sure! I hope there are other groups like this around the country that help parents navigate the protocol.
Posted By Phyllis on May 18, 2010
In a Huffington Post article, writer Dana Ullman raises some very significant questions about the state of American medicine, which has come to rely so heavily on pharmaceuticals. In particular, he attacks the medical research system that supports it.
Drugs are subjected to clinical trials lasting just six weeks. How can that realistically evaluate a medication that individuals may take for years? And, Ullman writes, the system tends to push negative data under the rug.
He quotes a heavy hitter in this area: Marcia Angell, a woman who edited the New England Journal of Medicine for two decades.
“Marcia Angell, MD, the former editor of the New England Journal of Medicine and author of the powerful book The Truth about Drug Companies, said it plainly and directly: ‘Trials can be rigged in a dozen ways, and it happens all the time’ (Angell, 2004, 95).”
He quotes her further:
It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine. As reprehensible as many industry practices are, I believe the behavior of much of the medical profession is even more culpable.
And he quotes Turner EH, et al., “Selective Publication of Antidepressant Trials and Its Influence on Apparent Efficacy,” The New England Journal of Medicine, January 17, 2008:
A review of 74 clinical trials of antidepressants, for example, found that 37 of 38 positive studies were published. But of the thirty-six negative studies, thirty-three were either not published or published in a form that conveyed a positive outcome.
Take a look at Ullman’s article, for plenty of food for thought that appears to me to be very relevant to the autism-vaccine debate.
Source: http://www.huffingtonpost.com/dana-ullman/medical-research-lies-dam_b_555525.html
Photo credit:
Posted By Phyllis on May 17, 2010
A reader brought an article to my attention. The article was written by a former NY state attorney general, Dennis Vacco, and it’s called “The Socialite Autism Murder.”
The bare bones of the story are this: a woman murdered her eight-year-old autistic son, apparently also intending to kill herself. Prescription drugs were the weapon. As it happens, the woman, Gigi Jordan, was a wealthy pharmaceutical executive, and her wealth has clouded the issues in the media. Ms. Jordan appears to suffer from psychosis, for example saying at the time that she feared a looming divorce and custody battle, but she had been divorced for two years, and there had been no such battle.
We shouldn’t let the wealth and the psychosis side issues in this story derail us from the main issue here: that parents of autistic kids need special support. Those who can provide “respite” care to give such parents a break may just be life-savers, in these situations where coping can be so difficult.
The dead boy’s father had this to say: “And to see him suffering… he was a good boy, but sometimes he would bang his head on the floor and scream and scream. He was in pain. His immune system was attacking his brain. She must have felt helpless.”
Posted By Phyllis on May 13, 2010
I was filing some papers yesterday and came across some comments from “Mike’s” teachers in the middle of ninth grade. That was a bit more than two years ago. At the time, he was on supplements from the Yasko protocol, but we had not figured out which ones were helping and which were hindering. His diagnosis was Asperger’s.
His grades were dismal: two F’s, two D’s, two C’s. His biology teacher wrote, “(Mike) is often distracted and often disrupts class.”
His English teacher: “He told me today that when he hears Sesame Street songs he feels so bad that he cannot control his reaction (he grabbed his head and started rocking back and forth because a girl in his group was singing a Sesame Street song under her breath).”
The same teacher, different day: “Today, (Mike) would not work for over half of the hour. He said he had something on his mind. He was antagonizing a student who sits near him by making grunting noises and tapping on his desk.”
As you know, the story is different now. Mike is making straight As. He’s not totally recovered from Asperger’s, mind you, but he has come a LONG way. It’s been a bit over two years since a chiropractor used “muscle testing” to weed out the supplements that weren’t helping.
“Mike” mentioned meeting another teen a few days ago who wanted to talk on and on about videogames. “I know I used to be like that,” he told me. “So I was patient with him.”
Posted By Phyllis on April 27, 2010
A PBS documentary on “The Vaccine War,” featuring Jenny McCarthy and others, will be shown tonight. Times will vary depending on where you are, of course. Here in St. Louis, it’s at 9 p.m. Check your local PBS station website for the time where you are, and let’s tune in to see what PBS thinks the scoop is!
Posted By Phyllis on April 19, 2010
Watch the story of Madison, an autistic child who is doing the same supplement therapy we are, plus more: gluten-free, casein-free diet, chelation therapy, and so on. She is clearly under treatment by a DAN! doctor. And she is getting a lot better!