Tag Archives: DAN!

Yasko autism protocol support group in St. Louis

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.

Flu vaccine injures cheerleader; “autism quack” brings her back

Desiree Jennings, a Washington Redskins cheerleader, took a seasonal flu shot in the summer. Days later she developed muscle dystonia, suffering seizures and uncontrollable muscle twitching that disabled her totally–unless she was jogging or walking backward. So strange. I saw a video about her online not too long ago.

Generation Rescue organizers saw it too and referred her to a controversial autism practitioner who has helped her tremendously. This is Rashid Buttar, MD, of Charlotte, NC, who is no longer affiliated with Defeat Autism Now! (DAN) and has some unusual protocols, even for autism practitioners.  His high fees draw fire, along with his controversial practices and lack of traditional certifications.

But in Desiree’s case, he has proven his value. In the intervening time, she got a lot worse; in fact, by the time she got to Dr. Buttar she appeared to be dying of acute respiratory distress, according to Fox News. Using hyperbaric oxygen chambers and IV administration of nutrients, he treated her, and she got a lot better.  The problem was a toxic reaction to the shot, including mercury toxicity, he told Fox News.  He expects her to fully recover with continued treatment.

The Web sites I looked up that mention Dr. Buttar contain some fairly incendiary language.  He is particularly criticized for charging high fees.

What this whole debate needs is some basic information so we can stop slinging mud and look at the facts. I am hoping someone will do the study I have been calling for: comparing autism outcomes for vaccinated vs. unvaccinated populations. As I noted in my last post, a study similar to that WAS done– looking for increase in allergies, asthma, eczema, and hay fever in vaccinated populations. In fact they found a statistically significant increase in those conditions.

Vaccines are NOT proven safe. The basic research on them has NOT been done. Let’s do it.

http://www.myfoxdc.com/dpp/health/desiree-jennings-flu-shot-reaction-111909

Child just diagnosed with autism?

This week, D. emailed me and said her grandson had just been diagnosed with Asperger’s. Where should she start in learning about this? she asked.

Here’s my reply:

You will find that the autism world is divided into two camps: mainstream doctors and parents (including some renegade doctors).

The doctors’ line:  we don’t know what causes autism, but we’re working on it, so be patient and in 25 or 30 years we’ll have some research answers. In the meantime, take some drugs.

The parents’ line:  let’s figure out what helps and treat our kids. Let’s minimize the drugs. Let’s take a good look at the overwhelming anecdotal evidence, which points to some kind of link to vaccines.

If you go with the parent camp, a good place to start is with the Autism Research Institute web site at www.autism.com.  You should also investigate Generation Rescue at www.GenerationRescue.com . They can assign your family a “rescue angel” who has a child recovered from autism and can coach you.  Or you can find a doctor who is associated with Defeat Autism Now!  Such doctors typically have autism-spectrum kids of their own, and wanted to find out what helps and do it.

Blessings,
Phyllis

Teacher conferences: “I Just Love Mike.”

We went to talk to Mike’s teachers last night, in the regular teacher conferences.  I was expecting more of the same–he’s doing pretty well, but, you know, he’s still doing this that or the other squirrelly thing.

Surprise!!! His teachers say that he has been improving even during this school year, and they all see radical improvement.  His handwriting is now smaller and legible, and he’s able to keep his math homework lined up on the page. He’s trying hard to do well in school.  Best of all, he’s interacting positively. In fact several of them said, “I just love Mike.” Excuse me, WHAT DID YOU SAY???

Now, that’s not what people typically say about an autistic person. Autistic folks, generally speaking, aren’t social.  Mike has some social tendencies and was occasionally lovable before puberty, but not at all since then, until now. He has just been too full of orneriness and anger, also hyperfocusing on whatever he is obsessing about at the moment, to relax and enjoy someone else.

I am particularly surprised because he’s been on the same biomedical intervention, a vitamin/supplement regimen, for a year and a quarter now. We did some mercury detox in the summer, but nothing different since then.  To what do I attribute this postive change?  I guess the regimen, over time, is able to remove toxins from his body.  Our bodies have a natural detox system involving the methylation cycle. Mike’s is impaired, according to Yasko’s genetic testing. So we can’t rev up the methylation cycle by giving him lots of Vitamin B-12, which  Yasko and the DAN doctor would prefer to do. But we can rev it up very slightly by giving him just a bit of B-12, and we have been doing that for a year and a quarter.  So perhaps over time, this natural detox is clearing his system in some way.

Autism’s False Prophets by Paul A. Offit, MD, a review

Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure, by Paul A. Offit, MD.

Published by Columbia University Press, 2008, 247 pages.

Offit, a doctor who is a proponent and inventor of vaccines, tells a sad tale of desperate parents of autistic children falling for charlatans. He details one death (from botched chelation) and plenty of wasted money, and lots of wasted breath on the subject of thimerosal and the MMR vaccine as causes of autism.

Offit has waded right into this controversy. He does some name-calling in the subtitle of his book, and ridicules those who disagree with him, suggesting they can’t count.

Here’s his summary (p. 247):  “The science is largely complete.  Ten epidemiological studies have shown MMR vaccine doesn’t cause autism; six have shown thimerosal doesn’t cause autism; three have shown thimerosal doesn’t cause subtle neurological problems; a growing body of evidence now points to the genes
that are linked to autism; and despite the removal of thimerosal from vaccines in 2001, the number of children with autism continues to rise.”

Offit says that epidemiological studies have refuted two vaccine-related hypotheses:

* that thimerosal, a mercury additive, causes autism, and
* that the measles virus in the MMR shot causes autism.

He lists a number of epidemiological (population-wide) studies to back these up.  He goes into absolutely no detail though. Bryan Jepson, MD, in his book Changing the Course of Autism, goes into plenty of details questioning these studies.  I would like to challenge Offit to respond to Jepson’s analysis, line by line.

Offit’s tone is most offensive when he quotes anti-vaccine activist and parent  Jenny McCarthy as saying “in 1983, there were 10 vaccines. Now there are 36.”  Offit then counts 7 in 1983 and 14 today and names them–polio, measles, etc.  Then Offit says “Misstatements of fact didn’t seem to matter. Thirty-six vaccines, 14 vaccines, close enough.”(p. 242-3)

Now, I know she is counting shots or sticks, like any mother would, while he is counting the several shots and boosters required for each disease as one vaccination.  He’s comparing apples to oranges and then adding a put-down. Does this make her look bad, or him?

Now, let’s look at his logic. He says that many studies are showing that neither thimerosal nor the measles virus from the MMR shot causes autism. Therefore, Offit says, vaccines don’t cause autism.

Whoa, Nelly. There are many more features of vaccines than just these two that could possibly cause autism. This is precisely Jenny McCarthy’s point: even if thimerosal and the measles virus are not to blame, the sheer number of vaccines being given our tiny children with immature immune systems could be causing autism, in some way not fully understood.  THIS question has not been the subject of a study yet, I believe.  Such a study would use epidemiology to compare a vaccinated population with an unvaccinated one.  There are such vaccinated populations:  Amish, and a home-birth medical practice that has delivered 30,000 children in Chicago. This study needs to be done, if the vaccine controversy is going to go away.

Here’s the reason why we need to do this study–we can all see that the autism rate has been rising with the number of vaccines given, as Jenny McCarthy was pointing out.  Even if we don’t have a theory of exactly HOW the vaccines may cause autism, the vaccines could still be causing it.

Offit thinks the cause of autism must be genetic.  Researchers are finding a collection of mutations that appear to be linked to autism. Actually my family has participated in this research. In our case, there clearly is a genetic component, with autism occuring in two generations.

But an epidemic CANNOT have a sole genetic cause. This is more logic. Mutations don’t just  start happening like crazy all by themselves. There has to be something in the environment that has changed, and that started changing significantly around 1990.

I think that many or most of the kids affected by the epidemic have only a minimal genetic tendency, and that a toxin of some kind is to blame.  For these kids, “recovery” is possible. I say this because I know moms of kids through the Internet whose kids are recovered. Jenny McCarthy’s son is recovered. In fact you
can see before and after videos  of recovered kids.  Treatments varied, but the result is the same.

Now, Offit plays the video card the other way. He cites a study where researchers looked at baby videos of older kids who are autistic. In their baby videos the researchers found autistic traits even before the age of 1. Therefore, Offit says, the MMR shot, given after the age of 1, isn’t to blame.  Well, I guess he can have that point. But he needs to look at the before and after videos of these other kids, the ones who are recovered. Offit actually denies that recovery is possible and praises parent activists who take this position as well.

And while he thinks autism must be genetic, he completely ignores the work of Defeat Autism Now! (DAN!) doctors and Amy Yasko on providing supplements to fill in the gaps in mitochondrial cycles such as the methylation cycle, gaps caused by genetic mutations.  The DAN!/Yasko approach is purely pragmatic — sketch the possible cycle problem, and try a supplement to fix it. If it works, keep it.  Offit is a theorist, and isn’t into pragmatics. He also doesn’t have an autistic child who is rapidly growing up, like many of the DAN! doctors do.

It’s been a long and vicious controversy. Offit carefully details it –how English doctor Andrew Wakefield, the first to link autism to the MMR vaccine, falsified data and was ultimately stripped of his medical license in the UK. How the possible thimerosal link was sensationalized, with the only supporting lab data available based on non-human studies. How both hypotheses are apparently proved wrong by a number of epidemiological studies (but he gives no details, as I said).

Then he describes various situations where charlatans have hoodwinked the public, and says that that is what is going on here.  Apparently he wants us parents to sit and wait while our kids are growing up, until the medical community comes up with a cause and then a cure. Never mind that the research being funded is aimed at genetic causes, not environmental.  Never mind that autism research is amazingly poorly funded, given the size of the epidemic. Never mind that our kids will be grown up in the meantime.

I am sad that the kids are losing out, as result of all this crossfire.  I hope that researchers will move their focus to a variety of environmental factors that could be causes, including the greatly increased use of plastics since 1990.

Especially I would like to see the epidemiological study I mentioned before, comparing vaccinated and unvaccinated populations.  The reason is the preponderance of anecdotal evidence that children become autistic soon after vaccination. And that’s not just for the MMR vaccine.

And what’s a parent to do? Since some kids are recovering, I believe it’s my responsibility as a parent to find out what I can and try what I can afford.  We do need to be cautious, especially not doing anything that could possibly hurt our children.  We need to be wise.  We need to share what works with each other. We do need to heed Offit’s warning that there are people out there ready and willing to prey on us.

Offit’s allies are parents whose primary motivation seems to be concern about hurting a child’s feelings by telling the child he’s in need of a cure.  That must be a bit hard on the self-esteem, I agree. These parents prefer to emphasize the special abilities that come with autism, including unusual memory.

So, here’s the question:  Does your child know he is different? If your child had the opportunity to choose, what would he or she choose? To seek a cure or not?

Well, I have a 21-year-old daughter with Asperger’s who has made this choice herself, after turning 21. She has chosen to go to the DAN! doctor and take the supplements. She is proud of her special abilities in memory and oddball sense of humor. But she has a sense of adventure, too.

That’s what we all need to do, we parents of kids with autism:  figure out what the kids would want, if they were old enough to choose. –Phyllis Wheeler