August 31, 2005

Wade From Injecting Sense is a New Orleans Refugee

Say a prayer for Wade Rankin and his family, especially his little guy who is having a little trouble with the situation. They live outside New Orleans and are held up in a hotel in Texas. They don't know yet if they have a home or job to return to.

Here is the latest word from him.

Abubakar: Health Sciences Institute

From the Health Sciences Institute Newsletter:

What would you do?

Imagine your child is autistic. You've followed your doctor's advice and tried powerful antidepressant and antipsychotic medications with no results. Special diets haven't worked. Sensory integration and other therapies haven't worked. At that point you might be open to trying something outside the medical mainstream.

This would appear to be the situation that a family from the U.K. found themselves in when they decided to bring their five-year-old boy to a Pennsylvania clinic for chelation therapy. Last week, after his third session of chelation, the boy died of apparent cardiac arrest.

The loss of a child is tragic, but even more so when the parents are doing everything they can to insure their child's well being. Autopsy results are still pending, so we still don't know if the cause of death was directly related to the therapy. But regardless of those results, a new controversy has already erupted on the borderline that separates mainstream medicine from alternative healthcare.

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Be good or be gone
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This time last week I would guess that most people had never even heard the word chelation (pronounced "key-LAY-shun"). And it's too bad that they should be introduced to this therapy by a tragedy because chelation is a useful tool. And despite the dire opinions you may have heard (one doctor told the Associated Press that she found chelation "very scary"), chelation is an FDA-approved therapy for treating children who have lead poisoning.

But there's a catch.

Chelation was first developed in the 1940s by the U.S. Navy to treat lead poisoning. In addition to lead, chelation purges other heavy metals as well when the chelating agent binds to metals and removes them from the body through urination. Chelation also binds with mineral deposits and is often used to treat arterial disease by removing plaques from artery walls. So chelation is like a bouncer at a nightclub, locating unwanted patrons and escorting them out the door.

Now here's the catch: In spite of the FDA approval to use this therapy on children, the medical mainstream CAN'T recognize the effectiveness of chelation in treating autism because that would amount to an official recognition of one of the suspected causes of autism: mercury toxicity from the vaccine preservative thimerosal.

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Ignoring connected dots
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I'm not going to reopen the thimerosal can of worms in today's e-Alert. (If you'd like to see the most recent e-Alert on this subject - "Doctored Up" 7/12/05 - you can find it on our web site at hsibaltimore.com.) Suffice it to say that the twin mainstreams of medicine and the media seem determined to place as much distance as possible between autism and the slightest hint that a vaccine ingredient might be at the root of the stunning rise in autism rates, which happen to parallel the rise in the use of thimerosal.

There's just one little problem with the mainstream dismissal of the thimerosal/autism connection. For many autistic kids, chelation works. And this is one of those rare cases where there can be no placebo effect. Children don't snap out of autism just because they're aware they're being treated.

Like so many alternative therapies, chelation has not been exhaustively researched. But when you're the desperate parents of an autistic child, you don't have the luxury of waiting until the day when we know all there is to know about this therapy. According to the Associated Press, a 2001 Autism Research Institute report showed that in a survey of more than 23,000 parents who resorted to chelation for their autistic children, nearly three out of four said this detox method had helped.

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Will level heads prevail?
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Earlier this year, a child died after passing out on a space ship ride at Disney World. The park wasn't shut down. Its license to operate wasn't revoked. And although the ride itself was closed, it was reopened the next day.

I hope the heartbreaking death of the U.K. boy isn't exploited by the mainstream and used as an excuse to ban chelation therapy. When the details of this case come to light, hopefully we'll be able to pinpoint exactly what went wrong. When I asked HSI Panelist Allan Spreen, M.D., for his thoughts, he pointed out that we still don't know what type of chelation was used (there are several - some are considered more risky than others), what the dose was and how quickly the dose was given.

He finished his comments with this: "Too bad the 600 people who die of common oral aspirin EVERY YEAR don't get the same press!"

Excellent point. This is the first chelation-related death in nearly half a century.

Chandler Just Asked His First Question!

We have been chelating Chandler since last fall, taking some big breaks in between rounds. We have not been chelating him this summer. We took a long break to switch doctors, give his body a rest, make sure all his essential minerals were replenished, do a bunch of testing and we will go it again when school starts in two weeks.

We did a DMSA challenge to reassess his lead and mercury levels, and in the last few days, he has made a big jump forward. You would think that I would not be surprised any more when he makes gains on chelation, but I guess I read so much that ‘it is not proven effective’, that I begin to doubt what I have seen in the past year.

In the few days following the 300mg dose we gave him for the urine test he has made some really good changes. He is just ‘more there’. It is hard to describe unless you know him well, but I will try.

First, in the last few days he has spent a lot more time with me. I was cooking for an hour and he spent the whole time sitting across the kitchen counter from me, playing with spoons and watching me. He also gets really upset when ever I leave and he can’t come.

He has started playing with the cats. Until now they have been invisible to him.

He has been asking for things like usual, but not like usual. He has added a few more four word sentences “I want light on”, but the most remarkable thing is that when he tells me what he wants, he is looking into my eyes expectantly for an answer. Before it was just, submit request “I want hot dog”, walk to kitchen, receive requested. Now he asks me for something, then just hangs there with this ‘please, please’ look on his face and waits for me to respond.

So this was the coolest thing. Today Sara Jane was over and all three kids were in the back yard. Chandler asked to swing (his favorite) and I said OK and the two of us walked toward the swing. When Web and SJ saw that Chandler was going there, as children do, they suddenly thought the swing was the coolest thing in the yard and everyone was fighting over it. So I closed the swing for business and directed them to the kiddie pool.

About 15 minutes later, Chandler came back up to me and said, “I want swing.” I said, “sorry baby, no swing” and waited for him to throw himself on the ground crying. He didn’t.

Instead he looked back up at me, cocked his head to the side and said, “I want slide?”

That was “I want slide?” with his voice going up at the end of the sentence, on the word ‘slide’, as people do when they ask a question!!!!

He was, in his heart, asking me, “Well, if I can’t go on the swing, can I go on the slide?”

We have never ‘taught’ intonation, he just picked it up by listening.

It was a great reminder of how well he does on chelation. If this is the improvement after one dose, I can’t wait to see what he starts doing this fall.

Say a little prayer for me that his next sentence is, “I wanna go potty”.

August 30, 2005

10 Things Children With Autism Wish You Knew

Brett at 29 Marbles has posted a wonderful primer for the Neurotypical in understanding and being a blessing to the Autistic.

Go read it. Then read it again.

Many times when they first meet him, people don't know quite what to do with Chandler. They want to engage him and show him a little love, but you can tell that they are unsure of themselves. I think that really internalizing this can give people a little more confidence in appraching autistic individuals.

My favorite part:
It all comes down to three words: Patience. Patience. Patience.

Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the GIFTS autism has given me. I may not be good at eye contact or conversation, but have you noticed I don't lie, cheat at games, tattle on my classmates, or pass judgment on other people?


As hard as we work to help these little ones fit in and function the best they can in a world that they were really designed to work well in, we should try not to miss the exceptional things that they offer. They see things that we miss all the time.

It is like Chandler can see colors that I can't, and vice versa.

Abubakar: Autism Research Institute

Autism Research Institute
4182 Adams Avenue
San Diego, CA 92116
fax: 619-563-6840

Home About ARI Introduction to Autism DAN! Treatment Vaccines and Heavy Metals Additional Information ARRI Publications Media

August 29, 2005

The Safety and Efficacy of Chelation Therapy in Autism Statement by Bernard Rimland, Ph.D., Director, Autism Research Institute regarding death on August 23rd of 5 year-old Tariq Nadama Of Pittsburgh, who was given intravenous EDTA chelation

I have received many media calls regarding the above, very unfortunate matter. This is what I tell reporters:

Chelation is not used to treat autism, but to treat heavy metal overload (lead, mercury, cadmium, etc), which is a major cause of autism and retardation.

Tens of thousands of children and hundreds of thousands of adults have been treated safely with chelation therapy for many decades. Dr. Ralph Miranda says there have been no deaths associated with chelation since the 1950's.

The child's mother, Marwa Nadama, says her son showed such remarkable improvement after the first few chelation treatments that if she had a choice, she would choose chelation again.

The mother also notes that she is unwilling to say chelation caused the death: "Let's wait until we have the results of the autopsy" (It could be the result of an allergy, for, example, to latex exposure in the medical office).

Conventional physicians, who have been critical of chelation, routinely use drugs such as Risperdal and Clonidine in treating autism. Death is a known side-effect of such drugs (read the labels!). Such deaths get no media attention.

The vast majority of autistic children who are chelated are chelated orally or transdermally (by gel, through the skin), as suggested in our Defeat Autism Now! (DAN!) document available at our website www.AutismResearchInstitute.com (www.autismwebsite.com/ari/dan/mercurymetaldetox.htm).

Thousands of parents of autistic children, treated safely with chelation, report, like Tariq Nadama's mother, that their children have shown remarkable improvement after chelation was initiated. Formal data collection is just getting underway, but initial data, on several hundred children is very encouraging.

Since 1967 The Autism Research Institute has collected "Parent Ratings of Behavioral Effects of Biomedical Interventions." To date, almost 24,000 parent responses have been collected. Chelation is a recent addition to our list of interventions. So far, of the first 400 parents who reported on the efficacy of chelation, 76% report "good" results, which is by far the highest "good" percentage reported for any of the 88 biomedical interventions (including 53 drugs) the parents have rated. See: www.autismwebsite.com/ari/treatment/form34q.htm.

The death of Tariq Nadama is a sad, very unusual and as yet unexplained anomaly. To advise parents against chelation because of this event is much like saying "Don't take your child to grandma's house — a child was killed in an auto accident en route to his grandmother's house."

Abubakar: From Dr. Neubrander

From Dr. Neubrander to the parents of his patients:

The cause of the recent tragedy involving the death of a young boy with the use of IV EDTA is expected to take time to determine exactly what happened.

Some of the leaders say that "no comment" is the best comment until the details are known. There is nothing wrong with that statement except that it does not aid in reassuring parents that biomedical treatments, in general, are safe with a relative benefit to risk ratio that is lower than almost anything else known. The truth is, at this time we just don't know what happened. However, considering that IV "calcium" EDTA has been used for years with extreme safety, only so many possibilities exist to explain what happened. The most plausible possibilities include: a) a rare allergic reaction; b) the form of EDTA used was disodium EDTA and not calcium EDTA.

For those looking for a "smoking gun" to justify them not using effective biomedical treatments, this is a dream come true. However, apples should be compared to apples and not oranges. One death from EDTA out of hundreds of thousands to millions of safe doses being administered by an FDA approved drug should be viewed side-by-side with the number of deaths from Ritalin over a 10 year period [186], chickenpox vaccine in a 3 year period [14], DPT vaccine in a 3 year period [471], MMR vaccine in a 4 year period [30], OPV vaccine in a 5 year period [540], Hepatitis B vaccine in a 8 year period [439]. The question must be asked, "Where is the smoking gun in reverse?

Why is one 'unapproved biomedical tragedy' so much worse than the hundreds of 'FDA approved tragedies'?"

Emphasizing this issue of bias, prejudice, inequality, and the frying pan calling the kettle black is an article written by Virginia Linn that appeared Monday, August 29, 2005 in the Pittsburgh Post-Gazette [for the complete article go to
http://www.post-gazette.com/pg/05241/561879.stm.

Though parents are dismayed about what happened and are now more cautious than ever, they are not willing to stop using a treatment that helps many children.

However, because many parents see chelation as a logical option due to the fact that they believe there is a connection between their children's autism and the mercury preservative in childhood vaccinations, Dr. Paul Offit, director of the Vaccine Education Center at Children's Hospital of Philadelphia, made the following statements. He said: a) "Scientific study after scientific study have found no connection, and it's unethical for any doctor to give chelation for this purpose; b) Doctors need to work harder to convince parents that the whole reason to use chelation is pointless; c) I wish there was more outrage with this death. This boy was sacrificed on the altar of bad science and that was unconscionable; d) Who was watching out for this boy?''

To his last statement about who was watching out for this boy I reply -- Each of us who:

a) Studies the issues open-mindedly.

b) Who reviews studies both pro and con about mercury and vaccines and who don't just swallow the party line, especially when there seems to be so much conflict of interest by so many parties involved.

c) Listen to parents to learn why what they are saying may be true, not why what they are saying is not possible because research doesn't support it.

d) Is willing to cry "foul" when articles such as the one that appeared in the New York Times gives only their side of the story, represents it as "truth", and sells their position by saying that parents are illiterate, opposed to science, acting out of desperation, duped by unscrupulous doctors, and who are speaking to God.

e) Is not willing to wait for the wheels of science and medicine to slowly
grind to fully document everything as safe, especially when these scientific gristmills are so often fed by the grains of money, politics, and power.

f) Is not willing to ignore the Science of THE GOD known as the "Weight of Evidence" when it shows a good benefit to risk ratio and does not bow to THE IDOL "when" it says it is the only god, the "Double blind Placebo Controlled Study".

g) Is willing to yell "unfair, unfit, unscrupulous" when one tragedy is used
to condemn all parents, all clinicians, all scientists who have come to thoughtful conclusions that are in direct conflict with the message that those pointing blame want to sell as being universally true.

But most of all, EACH OF US WHO are intelligent enough to realize that any person, any time, anywhere who points blame with one finger but who does not look into the mirror and point the finger back when equal or greater atrocities occur "in the name of good science that rests on a TARNISHED ALTAR with the blessing of the FDA-GOD" is definitely worshipping at the feet of THE IDOL. However, to be perfectly clear and not be misquoted which is sure to happen, double blind placebo control studies are not an idol or a god. Rather, the problem is the way humans have made an idol out of something that is here to serve them all the while saying it is the only god. Therein lies the fallacy. Herein lies the truth: The "total body of knowledge", as gathered by "the total compilation of evidence" from parents, clinicians, "classic" science, and "the other sciences" is the only way to find THE TRUE GOD OF KNOWLEDGE.

THE FOLLOWING TWO POSTS SAY IT WELL.

POST #1:
From: "bradfordhandley"
Date: Thu Aug 25, 2005 1:40 pm
Subject: Pittsburgh Story thoughts bradfordhandley Offline Send Email

A child lost his life because his parents were trying to remove the heavy metals from his body and he had an allergic reaction from the drug being administered.

There is no way to sugarcoat what happened, all of our hearts go out to the
parents and family who are grieving, and, for many of us, this hits very, very close to home and reminds us that no medical procedure is 100% safe.

Will the press and mainstream medicine have a field day with this story?

Absolutely.

My wife and I welcome discussions with the press. Losing even one life is
too high a price to pay for healing our kids, and we need to learn from this experience to make treatment even safer and more effective.

To say that we are using "chelation therapy to treat autism" is a misstatement. We are using chelation therapy, in our case, to treat a medical diagnosis of heavy metal toxicity. That is what my son actually has, that is what the dozens of medical tests we have run on him show, and one year into chelation he has improved dramatically.

Autism is a psychological diagnosis, based on observed behavior. It does not offer up a medical foundation or explanation for cause.

This case will be blown out of proportion. We can use this as an opportunity to explain to the world why we are treating our children (because they are heavy metal poisoned), how they are progressing, and that we all know and accept the risk involved in making our children better.

Of course, the press will probably not mention some of the ugly truths that
are out there about how our children die from other treatments, so here are some resources to consider, in an attempt to help the journalists reading this list put things into perspective:

1. Between 1990-2000, 186 reported deaths from Ritalin:

http://www.ritalindeath.com/

2. Children's deaths from vaccines, as recorded by the CDC:

Chickenpox vaccine 1995-1998:

Between March 17, 1995 and July 25, 1998, 6580 adverse events - including 14 deaths - were reported to the Vaccine Adverse Events Reporting System in association with varicella vaccination--- Pediatric News 33(3):12, 1999.

For DPT vaccine 12,504 reports VAERS reports with 144 deaths per year(1990-1993)

"In a year-long investigation of the Vaccine Adverse Reaction Reporting System (VAERS) operated by the Food and Drug Administration, NVIC/DPT analyzed VAERS computer discs used by the FDA to store data on reports of deaths and injuries following DPT vaccination. A total of 54,072 reports of adverse events following vaccination were listed in a 39-month period from July 1990 to November 1993 with 12,504 reports being associated with DPT vaccine, including 471 deaths."Campaign Against Fraudulent Medical Research (CAFMR)

MMR vaccine VAERS reports 7 deaths per year (1990-1994):

"From July 1990 thro' April 1994, 5799 ADRs following MMR vaccination were reported to US Vaccine Adverse Events Reporting System (VAERS); including 3063 cases requiring emergency medical treatment, 616 hospitalizations, 309 who did not recover, 54 children left disabled and 30 deaths."--- John P Heptonstall

For OPV vaccine there were VAERS reports of 108 deaths per year over a 5 year period.

"We commissioned an OPV Vaccine Report and started making all kinds of other inquires. The OPV Vaccine report that we received was a shocking report. It covered a recent period a little less than 5 years and the following is the summary for that period: The number of Vaccine Associated events that occurred: 13,641 ..The number of events resulting in death 540"--The Polio Connection of America & Polio vaccine victims:

http://village.ios.com/~w1066/poliov6.html

For Hep b vaccine there were VAERS reports of 54 deaths per year(1990-98)

"The total 24,775 VAERS hepatitis B reports from July 1990 to October 31,1998 show 439 deaths and 9673 serious reactions involving emergency room visits, hospitalization, disablement or death."-- Michael Belkin

http://www.whale.to/vaccines/belkin1.html

"Since July 1990, 17,497 cases of hospitalizations, injuries and deaths in America following hepatitis B vaccination have been reported to the Vaccine Adverse Event Reporting System (VAERS) of the U.S. government. This figure includes 146 deaths in individuals after receiving only hepatitis B vaccine without any other vaccines, including 73 deaths in children under 14 years old. In 1996 alone there were 872 serious adverse events in children under

14 years old reported to VAERS. 658 of those injuries were following hepatitis B vaccination in combination with other vaccinations and 214 of these injuries were after hepatitis B vaccination alone. In these children under 14 years old, there were 35 deaths after hepatitis B vaccination in combination and 13 deaths after hepatitis B vaccination alone, for a total of 48 deaths. Compare these statistics with the total number of hepatitis B cases nationwide reported that same year (1996) in children under 14, just 279, and the conclusion is obvious that the risks of hepatitis B vaccination far outweigh its benefits."---Incao's Hepatitis B Vaccination Testimony



POST #2: The following was posted from Dr. Gary Gordon, one of the founding
fathers for chelation therapy and an expert in the field of chelation for all reasons, not just for heavy metal poisoning seen in ASD children.

Dear Health Care Professionals:

You may soon read and hear the kind of hysteria and negative press that I expected to see, but it will get FAR WORSE before it gets better. As of this moment, I can only assume that there must have been a substantial deviation from the standard procedures that I, and all of you, have established for the safe administration of Calcium EDTA. As incredible as it may seem to those of you belonging to this discussion group, the possibility exists that the child was treated with Disodium EDTA administered by IV Push. I am forced to consider this unfortunate explanation unless there was some major undiagnosed illness in the child that no one suspected, such as a major heart defect or perhaps an aneurism that ruptured at the exact time the patient was receiving the IV Push of Calcium EDTA. However, the autopsy has been completed and he results were inconclusive so that they have ordered additional tests, which may take up to 5 months to complete.

This means that there is no obvious explanation for the death of this child.

My fear is that if someone who is not knowledgeable in chelation and has not learned that this is complex chemistry assumes, for example, that all that they have to do to provide magnesium EDTA or Calcium EDTA is just add either magnesium or calcium to a syringe containing Disodium EDTA.

We could have a serious problem because Disodium EDTA has a black box warning about rapid administration to children and simply adding something like Calcium or Magnesium does not fully convert Disodium EDTA to Calcium EDTA. Then there is also a problem with discomfort, if you tried to give yourself an IV push of diluted Disodium EDTA the pain could be extreme so you might wind up increasing the dose of Lidocaine and again we can get into problems with the heart if too much of a "caine" if given intravenously.

So let's look at the big picture, there are NO DEATHS occurring when EDTA, either calcium or Disodium are PROPERLY administered. Now the media will try to make chelation out to be fraudulent and the tests that we do to measure lead etc as being meaningless. Amazingly they will bring out Quack buster Barrett who with a little more effort we may be able to one day put behind bars for his lies and incompetence.

Thus I have to conclude some error in rate of administration, dosage, method of preparation probably occurred; in fact, I now believe this is most likely rather than administering the correct drug, Calcium EDTA, intravenously, which even in children is safe and effective.

Doctors who have been providing this treatment to children can hardly stop talking about the remarkable successes they have been witnessing with children responding far more rapidly than we could ever do with just the oral Calcium EDTA that I have been advocating for so long.

We know that worldwide sales of all forms of EDTA have been steadily increasing and that based on logical calculations it appears that well over 10 million patients have been safely treated with either Calcium or Disodium EDTA over the past 32+ years without a single documented fatality, as long as the established protocols were followed. All the evidence to date that EDTA is perhaps the safest therapy offered in medicine, outside of placebos.

To my knowledge, EDTA has been safely administered for nearly 50 years with the only deaths occurring in the beginning, with terminal cancer patients suffering uncontrolled hypercalcemia where inappropriate doses of Disodium EDTA were administered by rapid infusion to patients with known compromised renal status.

With the extensive proof now existing that everyone today has nearly 1000 times too much lead in their bones and Harvard publishing that this bone lead will compromise vision there can be no argument that we all have some heavy metal toxicity. Then once we conclude that government cannot stop the mercury, cadmium, lead etc from going in the air, and thus into everyone anywhere on earth, then it becomes a matter of personal choice, live with these heavy metals or remove them. Oral chelation is clearly necessary since bone lead will take 10 years to turn over for the average adult, but some of us want results NOW. Nothing is as effective as the 147 fold increase in lead excretion over base line that IV Calcium EDTA, PROPERLY FORMULATED, was documented to induce by Doctors Data with the help of Dr Whitaker's staff.

Thus I must extend my sympathy to the family of the deceased 5-year-old boy from Nigeria whose brave mother came to the Pittsburgh area from the United Kingdom to seek treatment for her autistic child. She was seeing clear improvements in her son. This was the third infusion he had received. He apparently had a cardiac arrest and was unable to be resuscitated immediately following this third infusion of what I fear was not Calcium EDTA, which is the ONLY form of EDTA that I have advocated for the exciting rapid infusion technique.

I hope those who have experience with it in their practice are NOT GOING TO STOP USING it that you have the "rest of the story", as best as we can establish it at this time. Please understand that the involved doctors cannot be expected to admit anything on advice of their attorneys. I have only checked to see if they have ever purchased Calcium EDTA and found the answer was ?no??. leading me to compose this email in an attempt to diminish the harm that the media will do to everyone who otherwise could have been receiving oral and or IV chelation and will now be afraid.

This email may be copied and handed to your patients in an effort to meet the need for a fully informed consent.

Sincerely,
Garry F. Gordon MD, DO, MD(H)
President, Gordon Research Institute

August 29, 2005

Not Just the Flu Vaccine

Just to be clear.

There is still thimerosal in some vaccines. Here is the CDC's list of thimerosal containing vaccines:

Ginger Shamblin
Illinois Vaccine Awareness Coalition

On July 5, 2005, the Food and Drug Administration released a list of vaccines with thimerosal (49.6 percent ethyl mercury). The following vaccines, still contain mercury as part of their manufacturing process or as a preservative.

DtaP - Tripedia, Aventis Pasteur, Inc.
Dtap-HepB-IPV - Pediarix, GlaxoSmithKline
DT - Aventis Pasteur, Inc
DT - Aventis Pasteur, Ltd.
Td - Massachusetts Public Health
Decavac - Aventis Pasteur, Inc
Td - Aventis Pasteur, Inc.
Energix - GlaxoSmithKline
Hepatitis B - Recombivax
HB (adult/adolescent available in preservative-free & thimerosal (mercury) containing vaccines;
HepA/HepB - Twinrix - GlaxoSmithKiline
Influenza: ALL INJECTED FLU VACCINES
Japanese Encephalitis - JE-VAC, Biken
Meningococcal - Menomune - Aventis Pasteur, Inc.

Amounts range from .5 micrograms to 25 micrograms. Check the CDC's web site for exact amounts. Vaccines with .5 micrograms are usually described as "low dose mercury" vaccines. However, there has never been any safety testing on thimerosal, so no one knows how much mercury is enough to cause harm.

Lead, a less potent neurotoxin than mercury, is considered unsafe at any level.

Abubakar: Official Response From: Kurt N. Woeller, D.O.

From the Pittsburg Post-Gazette
Wednesday, August 24, 2005
By Karen Kane and Virginia Linn,
Pittsburgh Post-Gazette

“A 5-year-old Monroeville boy died this week during a medical treatment that's being touted by some as a cure for autism.”

Official Response From: Kurt N. Woeller, D.O.

The news this past week about a 5 year autistic boy dying during intravenous EDTA chelation therapy is unfortunate, sad, and tragic. I feel very sorry for everyone involved including the parents and family members, as well as the attending physician and office staff present during this unfortunate event. None of us wants to hear the news of a patient dying during a medical procedure, especially a young child.

It is important that we wait to pass judgment on this situation until all the facts are in. Preliminary autopsy results were inconclusive and could take up to 5 months before something is known for sure. The facts about this case are just not known publicly. What we do know is that chelation therapy has been an effective treatment for many children on the autistic-spectrum, and I believe will continue to offer many kids an opportunity for improved health and vitality. For some it will even be the treatment that leads to recovery.

EDTA is primarily a chelator for lead. An FDA approved compound it has many uses in the food and cosmetic industry as a stabilizing agent in processed foods, ie cereals and shampoos, as well as a variety of intravenous fluids and medications. As we know it is also FDA approved, along with DMSA for lead toxicity. The news article stated that IV EDTA was being used as a treatment for autism cure. Certainly, this statement would be deemed controversial by most medical authorities. However, would the use of intravenous EDTA be controversial if a patient were found to be lead toxic?

According to established medical practice it is a necessary procedure to remove toxic lead. I have seen on many occasions were medical authorities claim that “chelation therapy is not a useful therapy for autism” and that it has not “been proven.” However, what about if the person (ie. child) is metal toxic, regardless if they are autistic of not? Wouldn’t the use of EDTA or a similar chelating compound then be deemed essential to remove the offending agent? Of course it would, and we can only assume that this is one reason the child in Monroeville was undergoing chelation therapy with intravenous EDTA.

It is quite possible the young boy had an anaphylactic allergic reaction to something in the intravenous fluid. He may have also had an underlying medical condition, ie. heart that predisposed him to heart arrhythmia’s in the face of mineral depletion. At this point we do not know. Hopefully, in the near future information will be forthcoming which will reveal what happened to this little boy. However, it is important that we keep this story in perspective when looking at the thousands of patients who have undergone similar treatments for metal toxicity. For most, chelation therapy is very safe and health enhancing.

Below I have listed some statistics about the state of medicine in our country today. The study which was released in the Journal of the American Medical Association in 2000 is quite revealing.

Doctors are the 3rd leading cause of death in the US, causing 250,000 deaths per year. All figures listed below are deaths rates per year:

• 12,000 unnecessary surgeries
• 7,000 medication errors in hospitals
• 20,000 other errors in hospitals
• 80,000 infections in hospitals
106,000 non-error, negative effects from prescription drugs!!

This last figure is frightening. Over 100,000 people die every year (including children) every year in the US from side effects from properly prescribed prescription medication. The atomic bombing of Hiroshima in WWII accounted for approximately 100, 000 people killed. A 100, 000 deaths per year are a lot and to think it is occurring from drug side effects. This means people are dying every year at alarming rates from properly prescribed antibiotics, asthma and high blood pressure drugs, chemotherapy medication, etc. Does this mean we stop dispensing these medications? Of course not. It is critical that we all have the understanding that one presumed death from a medical treatment does not indicate that this medical treatment it is inherently dangerous for everyone involved. There are approximately 100 deaths per year from food related allergies with most occurring from peanuts!

Vaccines as we know carry their own risks. Around 100 to 120 deaths are reported annually in the US due to vaccinations. Unfortunately, these rates are probably higher as the FDA indicates that less than 10% of physicians report adverse vaccine reactions to the Vaccine Adverse Event Reporting System (VAERS). However, vaccines are given to millions of people every year, including children who do not suffer with any side effects. Many patients do have problems as we have seen with autism community, but a large percentage of people do not. From my experience the same can be said of chelation therapy. For the majority of patients, including children on the autistic-spectrum it has been a very safe and effective therapy.

Kurt N. Woeller, D.O. – Medical Director
Stillpoint Center for Integrative Medicine

Dr. Buttar's Comments on IV Chelation and Abubakar

Dr. Rashid Buttar is one of the most vocal proponents of chelation therapy for autism and Pat Sullivan is a software mogul turned health advocate after his bought of mercury poisoning from dental amalgams. Pat, with the doctor's permission, has made public some private emails between the two on his blog. The emails were both before and after the death of Abubakar.

A must read for any one in the discussion.

I do not know this Dr. Kerry. However, Dr. Usman, one of my trainees had started this child on our TD-DMPS over a year ago and the child had done tremendously well. The mom had actually sent me an email thanking me for developing the protocol about 8 months ago since her son had responded so dramatically well to the treatment.
Read all of it here.

Reactions to Anthrax Vaccine

Potentially Fatal Shot Comes From Syringe, Not a Rifle
08/28/05
By Helen Barrett

He had a choice.

Take the anthrax vaccine as ordered by his commanders or face Court
Martial.

Despite reservations, E-4 Kent Stewart of the Oklahoma National Guard,
HHB 45th, Field Artillery Brigade rolled up his sleeve and obeyed.

"I felt the shots weren't going to be doing any good," he said. "I
didn't personally think there was that big a threat."

Stewart and the rest of his company received their activation orders
February 14, 2003.

Five days later the first of a series of six vaccinations including the
anthrax and smallpox vaccines started the unit's preparation for
deployment to Iraq for Operation Iraqi Freedom.

Stewart had heard rumors of adverse reactions to the vaccines resulting
in a reluctance to take the shots.

To refuse would result in a dishonorable discharge or a bad conduct
dismissal his superiors told him.

Almost immediately after taking the first round of vaccines, Stewart
began experiencing severe headaches.

On March 15 he received the second series of shots. The third series
followed April 4.

Dizziness, tingling on the left side of his face, in his hands and legs,
and attitude changes manifested themselves.

On May 27, ready to board the train for deployment from Ft. Sill in
Lawton, the unit received notice their orders had been canceled.

Stewart received his fourth round of the vaccine on December 7, 2003.

Vomiting, weight loss, insomnia, and other symptoms started.

During the summer of 2004, Stewart suffered a pancreatic attack. Tests
to determine his problem began. Each episode required treatment with
antibiotics and other medications to ease the symptoms.

On Aug. 15, 2004, he received his fifth (and last) immunization.

His condition worsened until he was hospitalized Nov. 22, and placed on
intravenous antibiotics for a week. Two days after his release the
condition returned. His family physician referred him to Dr. Dilling, an
ear-nose-throat specialist in Enid.

Realizing this was not a problem involving his speciality, Dr. Dilling
referred Stewart to Dr. Rietz, a neurologist.

A battery of tests including a lumbar puncture, MRI, and extensive blood
tests were performed. After obtaining the results, Reitz referred
Stewart to Dr. Tarek Neguib, M.D. who specializes in immunology.

More tests followed.

In his official report dated March 28 of this year, Dr. Naguib listed
his medical impression as:

1. Immunoglobulin A deficiency

2. Immunodeficiency due to #1

3. Multiple neurological manifestations with no structural disease on
imaging and no infections etiology on work up. Suggestive of probable
immunologic reaction to vaccination.

Dr. Naguib further stated, "The patient has a history of anthrax
vaccination series 5 out of 6 doses among other vaccinations that
preceded the evolution of symptoms in this previously healthy
37-year-old male. Makes vaccines a suspect etiology for this unusual
presentation."

MILITARY UNRESPONSIVE

Stewart's records were sent to a physician at Vance Air Force Base who
referred him to a hematologist.

To date government sources have not offered any solutions or assistance.

The family contacted a JAG officer. They were told the State of Oklahoma
had approved help but the Surgeon General's office denied the request.

Unable to work because of his compromised immune system and continual
illness, the Stewart family faces foreclosure on their home in addition
to mounting medical costs.

MILITARY POLICY CHANGED

Stewart is not the first soldier to report illness after taking the
anthrax vaccinations.

A recent story reported by Knight Ridder Newspapers' writer David
Goldstein, 16 people died between 1990 and 2004, after taking the
vaccine. Goldstein cited the government's Vaccine Adverse Event
Reporting System as his information source.

Most suffered heart, lung and immune system problems as well as cancer.

All but five died within three months of their sixth vaccination. Nearly
4,500 other recipients reported having medical reactions with nearly 8
percent listed as "serious," meaning the problems were life-threatening,
required hospitalization or resulted in a major disability.

A Maine internist and leading critic of the vaccine, Meryl Nass, says
the military turned "a blind eye" to the risks.

"The people who become disabled more often than not have multiple
diagnoses . . . their bodies are not doing what they're supposed to be
doing," Nass said.

Beginning two months ago, the military policy changed from making the
anthrax vaccinations mandatory to voluntary.

Since the policy changed, half the military and civilian Defense
Department personnel asked to take the shots have declined.

CONTROVERSIAL VACCINE

Almost from the beginning the anthrax vaccine has been controversial.

The FDA licensed it in 1970 but only for anthrax exposure through the
skin because the disease was largely confined to the livestock industry.

"They are still testing the serum to see if it works or doesn't work,"
Stewart says. "They tested it in the 70s and people still got anthrax."

FDA Warning Letters were sent to the manufacturer in 1995 and 1997
threatening to revoke their license. The Gulf War Vets website says an
FDA report documented 84 quality control and procedure violations by the
manufacturer.

"We talked to the main immunization place in Washington and they told
Kent not to take the human immunoglobulin shots because it would
probably kill him," Stewart's wife Lisa said.

Meanwhile, the Stewarts feel helpless.

"The military hasn't sent him to any of their specialists," Lisa said.
"We feel like they've dropped the ball."

Stewart made the choice to serve his country.

He even knew that choice might involve making the ultimate sacrifice.

He just never expected the potentially fatal shot to come from a syringe
instead of a rifle.

August 28, 2005

Its 'The Right of the Individual' not 'The Right of the Herd'

Craig Westover has a great piece that speaks to the heart of what is wrong with the mindset of the AAP and CDC in regards to vaccine safety.

The danger as the AAP sees it is a danger to “our immunization efforts,”not a concern for individual safety. It does “public health efforts a disservice.” This is not the sound of government conspiracy; it is the voice of arrogance. Questioning safety does not endanger children, families and communities. It only endagers a program that cannot provide satisfactory responses to questions of safety.


Read the whole thing and make sure to check out his post from last year on the consequence of government price fixing on vaccines that is linked to toward the end.

REALLY Smart Advice

I just got this email from Unlocking Autism. It is great to see that police can respond so sensitively to autistic people when they are informed. I am gonna do this today.

We received the following letter on Friday night from Jodi Isom who was in a wreck on August 24th. She and her family are fine. She had a safety awareness sticker for emergency personnel and explains in her letter how that helped them through the situation...and that she realized how helpful it would have been if she had been rendered unconscious, or worse.

Our Emergency Stickers are available at our website at www.unlockingautism.org and are provided as a simple tool to help in the event of an emergency in your car or your home to alert Emergency Responders that there is a person with autism who might need assistance inside.

We suggest that your family visit with Emergency Responders (fire and police) in your local area to educate them on how to respond best to your family. We make cookies for both about once every 2 months and go on a field trip to the fire station with Liam. He loves to go climb around on the fire engine and honk the horn and wear the hat. The purpose is to help him become more familiar with uniformed people to realize that firemen and policemen are people there to help him and help him not to be afraid of them.

It is always better to be prepared!

Shelley Hendrix Reynolds

President, Unlocking Autism

*************************************

Hello parents,

I want to share this small story and you can benefit too. On my van is a red sticker inside the windshield stating: ATTENTION Emergency Personnel!!! PERSON WITH AUTISM

Then on my back door is the ribbon magnet of AUTISM AWARENESS. This really became a key element on August 24th, when a man who ran a red light and caused me to run right into him. Everyone including Ryan is doing fine and he was seatbelted in the back seat listening to his music. THE KEY FACTOR IS: The officer that approached me saw the red sticker in the window and the magnet not the back hatch. He asked "do you have a child with you or anyone else"? I exclaimed my son is with me and doing okay. The officer says" I see you have the autism sticker and is he okay"? "Do you need medical or a wrecker"? I said "No, we are okay and he is not upset yet". Officer said "I will try to get you out of here as soon as possible and I understand".

Within a few minutes while waiting on confirmation on paperwork he explained that he once dealt with an autistic child in a wreck and the child was devastated and hard to handle. Well, another officer walked up and first thing asked "is the child okay and how is he handling this"? I told him we were both okay and he is being patient. Then the first officer came back and explained they were going to have to put handcuffs on the guy who hit me and mentioned this may upset your child. He had all the information he needed and said I could go. As I pull away, they made sure I was to the next block till they put those handcuffs on.

Thank you officers.

Thank you Unlocking Autism for the wonderful sticker. I even have one in the window by my front & back doors. To purchase this sticker go to www.unlockingautism.org

What if I had been unconscious or , etc.? That sticker was a huge help.

Thank you,
Jodi Isom
Parent Support Autism

Chandler Loves Oobi

He watches it every day on Noggin (a Nickelodeon network). The characters speak in the basic broken English that we talk to our children in and Chandler has learned lots of words and even several abstract concepts from watching the show. About 6 months ago he was jumping on the bed and laughing and said, “SILLY!” I was sure I heard wrong until I saw him watch Oobi for the second time that day and the characters were dancing and laughing and saying “Silly”. He has that concept down cold now.

This summer he has learned a LOT of language from Oobi. The characters speak in only basic sentences (Look! Oobi clean room. Now go outside.) so I think it is easier to pick up what they are saying. He has begun using scripted language from the show. When he wants me to quit folding laundry and play with him, he will take it out of my hand, look at me and say, "Game over". When he wants me to join in with him, he will say, "Oobi sing, you sing. You sing." No matter the activity, he uses that sentence.

I also have a theory about their static eyes and 'faces' being less complicated and more easy for him to understand, but who knows.

From the Noggin.com web site:

Oobi is an original series based on NOGGIN’s own Parents’ Choice Gold Award-winning short-form series. Oobi, a bare-hand puppet (with eyes and accessories) focuses on the stage in a young child’s life when everything in his or her world is new and incredible. Oobi is a show about wonder. It speaks to the stage in a young child's life when everything is new and incredible: building a block tower, making cookies. Oobi is a show about children's first awkward attempts at mastery and meaning. It's a show about the everyday revelations.

Learning Goals: With interactive games and story, Oobi, a curious and gentle four-year-old, discovers the world around him, along with his three-year-old sister Uma, his best friend Kako, and his grandfather, Grampu -- all bare-hand puppets. Through connected learning preschoolers build vocabulary, concepts and skills from mathematics, early literacy and logical thinking as they play.

Ummm... Huh?

As I am three years older than him, and have put more hours in as a therapist as he has has a doctor, I plan on submitting my resume for consideration for the number 2 position at the APA on Monday.

Wall Street biotech insider gets No. 2 job at the FDA
By Alicia Mundy
Seattle Times Washington bureau


Only a month ago, Dr. Scott Gottlieb was a Wall Street insider, promoting hot biotech stocks to investors.

Now Gottlieb holds the No. 2 job at the Food and Drug Administration (FDA), the federal agency that approves new drugs, oversees their safety and affects the fortunes of companies he once touted.

Wall Street likes the appointment of Gottlieb, 33, who believes in faster drug approval and fewer news-release warnings to the public about potential side effects of drugs.

But some medical experts are shocked by his July 29 appointment, coming at a time when the public is increasingly concerned about the safety of popular medicines. In addition, the federal government has just begun scrutinizing the growing financial ties between Wall Street firms and doctors researching new drugs.

Gottlieb's new job "further impedes the independence of the FDA," said Dr. Jerome Kassirer, former editor of The New England Journal of Medicine. "Gottlieb has an orientation which belies the goal of the FDA."

"I've never heard of anything like this," said Merrill Goozner, a director at the liberal Center for Science in the Public Interest.

"If he's had dealings regarding companies whose products are up for review at the agency, it strikes me as a potential conflict of interest. You want a barrier between the regulated and the regulators. It's fundamental," Goozner said.

Dr. Scott Gottlieb


FDA deputy commissioner for policy

Age: 33

Salary: About $140,000

1994: Bachelor's degree in economics, Wesleyan University

1994-1995: Alex. Brown & Sons, investment bank

1995-1999: Mount Sinai Medical School, New York

1996-2001: Wrote for The Journal of the American Medical Association

1997-2005: Staff writer, British Medical Journal

2000-2002: Author, Gilder Biotech Report

2003-2005: Medical internist, Stamford (Conn.) Hospital

2003: Resident scholar on medical policy, American Enterprise Institute

March 2003-May 2004: Senior adviser, then director of medical-policy development, FDA

June-October 2004: Senior adviser, Centers for Medicare & Medicaid Services

Late 2004-July 2005: Resident scholar on FDA and Medicare policies, American Enterprise Institute

Late 2004-July 2005: Author, Forbes/Gottlieb Medical Technology Report

Late 2004-July 2005: Private consultant/speaker to investment firms and the pharmaceutical industry

Source: AEI and Dr. Scott Gottlieb

A half-dozen current or former officials at the FDA say they do not know of anyone from Wall Street moving directly into such a high-level job at the agency.

Until last month, Gottlieb was editor of a popular biotechnology investor newsletter, Forbes / Gottlieb Medical Technology Investor. Forbes touted Gottlieb's stock-picking success on its Web site in mid-May:

"Special Offer: In the last few months, Dr. Scott Gottlieb recommended two cancer cure stocks to subscribers that have already climbed 38%. Click here for the latest report from Forbes / Gottlieb Medical Technology Investor, 'Three Biotech Stocks To Buy Now.' "

Now, as one of three deputy commissioners, Gottlieb will help oversee such major policies as the FDA's fast-track approval process for drug and biotech products, a priority for many Wall Street funds and the pharmaceutical industry.

Gottlieb said he has cut his ties to Wall Street and discontinued his newsletter. He doesn't see a conflict between that work and his new role as a high-ranking regulator.

"What I learned while working on Wall Street has informed almost everything that I have done since, but especially my work in the government," he responded in an e-mail to questions from The Seattle Times. (The FDA would not allow the Times to interview Gottlieb or provide answers to questions about his background. The FDA has not released his financial-disclosure forms.)

"[It] has helped me appreciate where regulatory policy can be improved upon to help enable medical innovation and to turn scientific breakthroughs into practical medical solutions that can help patients."

Gottlieb was an analyst for a Wall Street investment firm before going to Mt. Sinai School of Medicine in New York. He earned a medical degree in 1999, then did an internal-medicine residency. From 2003 until a few weeks ago, he saw patients during weekend shifts two or three times a month at Stamford Hospital in Stamford, Conn., he said.

Since becoming a physician, he has worn many hats. From 2000 to 2002, Gottlieb wrote the Gilder Biotech Report, an investment newsletter, reporting on potential FDA decisions, drug and biotech developments. He also worked as a staff writer for the British Medical Journal.

In 2003, he was a full-time resident scholar working on FDA policy issues at Washington, D.C.'s most formidable conservative think tank, the American Enterprise Institute (AEI).

Along the way, he became a leading proponent of doctors increasing their income by selling their understanding of drugs and the federal regulatory process to stock analysts and investment firms — "Moving your Career from Main Street to Wall Street," as Gottlieb wrote in an investment column in the American Medical Association newsletter.

He joined the Food and Drug Administration in March 2003 as a senior adviser on policy and soon made an impression. Later that year, the SG Cowen brokerage house sent a report to subscribers, "A Recap of What's Gone Right at the FDA," that praised Gottlieb and other new FDA officials under then-Commissioner Dr. Mark McClellan for working to streamline the drug-approval process.

"Should McClellan's team succeed in getting their strategies adopted into the framework of the approval process, the team's impact on FDA policy could last well beyond the current administration."

Gottlieb moved with McClellan, brother of White House spokesman Scott McClellan, to the federal Centers for Medicare & Medicaid Services in June 2004 and left that October.

He then returned as a full-time scholar at the AEI and started the Forbes / Gottlieb Medical Technology Report.

Gottlieb, a Bush administration appointee making about $140,000, comes to the FDA with an agenda. In addition to advocating faster drug approvals, he has complained the FDA sends out too many "shotgun warnings" on any particular drug's emerging side effects, which he said may cause patients to overreact.

He wants the warnings to be sent to doctors first, and without "overstating a product's risk."

He also has urged that the FDA change longstanding policy and release data on experimental drugs at different stages of the research, from animal tests to final patient studies.

Releasing more data at each stage would help investors put money behind promising drugs and products earlier and would better protect patients in the clinical trials, he has explained.

Three years ago, Gottlieb wrote about an issue that was spotlighted last month in a Seattle Times investigation — the practice of doctors leaking details of ongoing drug research to investment firms, which can then profit from the information by selling or buying stocks.

The Times found 26 cases in which doctors leaked confidential and critical details of their ongoing drug research to Wall Street firms. The report has led to a Securities and Exchange Commission investigation.

"Traders will go to great lengths to get market signals from medical researchers," Gottlieb wrote in Barron's, an investor publication, "and the tight lid the FDA keeps on clinical-trials data has spawned a thriving niche of boutique investment-research firms that link money managers with medical experts capable of giving investors a wink and a nod."

Gottlieb is against such leaks. But he did not call for better enforcement of confidentiality agreements that should preclude such behavior. He instead urged that the FDA open up its drug-approval process to investors and the public.

"Bizarre FDA rules allow companies to hide clinical information practically in perpetuity. Something needs to change," he wrote in the Gilder Biotech newsletter in 2002.

"The FDA could and should release data contained in a company's (FDA) filings at each stage in the process. ... Why shouldn't markets know what bureaucrats and insiders do?"

Kassirer, the former editor of The New England Journal of Medicine, said early release of clinical-trial information "strikes me as potentially good for investors but bad for the validity of clinical research."

"Releasing data early could result in premature and erroneous conclusions about the drug or device being tested, premature ending of clinical trials and even inappropriate enrollment of patients," he said.

The FDA would not comment on Gottlieb's ideas on changing policy to allow for earlier release of clinical trial information, except to note that the articles were written before Gottlieb joined the agency.

He also has consulted for, and written positively about, a major matchmaking firm that links doctors with Wall Street investors, the Gerson Lehrman Group in New York.

He has known founder Mark Gerson for several years, and both are part of the conservative establishment in D.C. With his pro-market views "Scott is popular with some people at the White House," said Robert Goldberg of the Manhattan Institute, a conservative think tank. He is a friend of both men.

Gottlieb highlighted Gerson's firm in investment columns he wrote for the AMA newsletter, and encouraged doctors to join Gerson's network and others. Not only can doctors increase their income, but they can help Wall Street investors decide which new technologies to put their money behind, he wrote.

Gottlieb said by e-mail that he was not paid to recruit physicians for Gerson's group. He added he had recommended a handful of policy-makers to Gerson Lehrman and was paid for probably fewer than eight hours of work.

Gottlieb said he also did a little work for the SG Cowen brokerage house but has not taken part in any conference calls between drug researchers and investors discussing ongoing clinical research.

When the FDA announced Gottlieb's hiring last month, it noted Gottlieb had been a practicing physician, a scholar at AEI and correspondent for the British Medical Journal. The agency did not mention Gottlieb's stints as editor of the two popular biotech investment newsletters or his work with Wall Street firms.

August 27, 2005

Different Types of IV EDTA Chelation

I didn't even know that IV chelation existed until a few weeks ago, so I have little to offer to the conversation. I will try to post any information I find on it and how it differest from oral chelation. I wanted to post this letter from a doctor who advocates IV EDTA chelation to his colleagues, as it offers some ideas on specifically what may have happened in PA.

Dear Health Care Professionals:

You may soon read and hear the kind of hysteria and negative press that I expected to see, but it will get FAR WORSE before it gets better. As of this moment, I can only assume that there must have been a substantial deviation from the standard procedures that I, and all of you, have established for the safe administration of Calcium EDTA. As incredible as it may seem to those of you belonging to this discussion group, the possibility exists that the child was treated with Disodium EDTA administered by IV Push. I am forced to consider this unfortunate explanation unless there was some major undiagnosed illness in the child that no one suspected, such as a major heart defect or perhaps an aneurism that ruptured at the exact time the patient was receiving the IV Push of Calcium EDTA. However, the autopsy has been completed and the results were inconclusive so that they have ordered additional tests, which may take up to 5 months to complete.

This means that there is no obvious explanation for the death of this child. My fear is that if someone who is not knowledgeable in chelation and has not learned that this is complex chemistry assumes, for example, that all that they have to do to provide magnesium EDTA or Calcium EDTA is just add either magnesium or calcium to a syringe containing Disodium EDTA.

We could have a serious problem because Disodium EDTA has a black box warning about rapid administration to children and simply adding something like Calcium or Magnesium does not fully convert Disodium EDTA to Calcium EDTA. Then there is also a problem with discomfort, if you tried to give yourself an IV push of diluted Disodium EDTA the pain could be extreme so you might wind up increasing the dose of Lidocaine and again we can get into problems with the heart if too much of a "caine" if given intravenously.

So let's look at the big picture, there are NO DEATHS occurring when EDTA, either calcium or Disodium are PROPERLY administered. Now the media will try to make chelation out to be fraudulent and the tests that we do to measure lead etc as being meaningless. Amazingly they will bring out Quack buster Barrett who with a little more effort we may be able to one day put behind bars for his lies and incompetence.

Thus I have to conclude some error in rate of administration, dosage, method of preparation probably occurred; in fact, I now believe this is most likely rather than administering the correct drug, Calcium EDTA, intravenously, which even in children is safe and effective.

Doctors who have been providing this treatment to children can hardly stop talking about the remarkable successes they have been witnessing with children responding far more rapidly than we could ever do with just the oral Calcium EDTA that I have been advocating for so long.

We know that worldwide sales of all forms of EDTA have been steadily increasing and that based on logical calculations it appears that well over 10 million patients have been safely treated with either Calcium or Disodium EDTA over the past 32+ years without a single documented fatality, as long as the established protocols were followed. All the evidence to date that EDTA is perhaps the safest therapy offered in medicine, outside of placebos.

To my knowledge, EDTA has been safely administered for nearly 50 years with the only deaths occurring in the beginning, with terminal cancer patients suffering uncontrolled hypercalcemia where inappropriate doses of Disodium EDTA were administered by rapid infusion to patients with known compromised renal status.

With the extensive proof now existing that everyone today has nearly 1000 times too much lead in their bones and Harvard publishing that this bone lead will compromise vision there can be no argument that we all have some heavy metal toxicity. Then once we conclude that government cannot stop the mercury, cadmium, lead etc from going in the air, and thus into everyone anywhere on earth, then it becomes a matter of personal choice, live with these heavy metals or remove them. Oral chelation is clearly necessary since bone lead will take 10 years to turn over for the average adult, but some of us want results NOW. Nothing is as effective as the 147 fold increase in lead excretion over base line that IV Calcium EDTA, PROPERLY FORMULATED, was documented to induce by Doctors Data with the help of Dr Whitaker's staff.

Thus I must extend my sympathy to the family of the deceased 5-year-old boy from Nigeria whose brave mother came to the Pittsburgh area from the United Kingdom to seek treatment for her autistic child. She was seeing clear improvements in her son. This was the third infusion he had received. He apparently had a cardiac arrest and was unable to be resuscitated immediately following this third infusion of what I fear was not Calcium EDTA, which is the ONLY form of EDTA that I have advocated for the exciting rapid infusion technique.

I hope those who have experience with it in their practice are NOT GOING TO STOP USING it that you have the "rest of the story", as best as we can establish it at this time. Please understand that the involved doctors cannot be expected to admit anything on advice of their attorneys. I have only checked to see if they have ever purchased Calcium EDTA and found the answer was ?no??. leading me to compose this email in an attempt to diminish the harm that the media will do to everyone who otherwise could have been receiving oral and or IV chelation and will now be afraid.

This email may be copied and handed to your patients in an effort to meet the need for a fully informed consent.

Sincerely,
Garry F. Gordon MD, DO, MD(H)

Kirby on Abubakar

Autism and Chelation: Where is the Science?
David Kirby
HuffingtonPost.com

Nearly four years ago, the Institute of Medicine recommended
research into chelation therapy and autism. But that never happened,
and now a little boy in Pennsylvania is dead.

The heartrending tragedy of Abubakar Tariq Nadama, an autistic five-
year-old who died while undergoing chelation this week, is one of
the saddest chapters in the very sad saga of autism in America.

But even as the grieving immigrant mother makes funeral arrangements
for her beloved boy, opponents of the theory that drew the family to
America (the theory that mercury triggers autism, and removing it
through chelation may improve symptoms) are holding his death up as
proof that the idea is bogus. They claim that the use of chelation
to treat autism is foolishly dangerous, and should be shut down at
once.

Some people have come perilously close to exploiting this tragedy to
further their own political or personal agendas. Some blame the
boy's death on his mother, who has been labeled as reckless
and "desperate." Others blame the Pennsylvania doctor -- and any
autism doctor willing to try chelation (the use of certain chemicals
to remove heavy metals from the body) – for the tragedy. Some fault
me, for writing a book that dared to include the topic of chelation
and autism within its pages.

It's time to take a deep breath and look at the facts.

First of all, only an autopsy will reveal the actual cause of death,
and I think it is prudent to wait before jumping to any conclusions
about the general safety of chelation and autism. That said, the boy
did die while undergoing the procedure, and it's possible the
controversial treatment is what killed him.

But here is where things get more complicated. Abubakar was given a
substance known as EDTA, and he was receiving it intravenously. EDTA
is used mostly (and legally, I might add) for the treatment of lead
poisoning. EDTA is not typically used in mercury cases, and it is
not clear why it was used to treat autism here.

In fact, I am unaware of any autistic child who's been chelated with
EDTA, nor am I familiar with any autism cases where IV chelation was
employed. The chelation methods I have written about (I do not, and
cannot recommend treatments, for the record, I only report on them)
were either oral or trans-dermal, and they used substances that are
significantly different than EDTA.

Furthermore, I cannot find any reference in the medical literature
about any patient dying from chelation. (Please post them if you
have them).

Does chelation therapy work? We just don't know. Could it be
dangerous, even deadly, for children with autism? Perhaps, but
there's no hard science available one way or the other. And if
chelation does improve symptoms, what are the best agents, at what
doses and timing, and through which route of administration? No one
can say, of course, because no one has bothered to study these
questions in double-blinded trials.

Which brings us back to the IOM recommendation of 2001. The
committee assigned to look into thimerosal (the mercury containing
vaccine preservative) noted that some autism practitioners
report "clinical improvements following chelation." And though the
committee said that chelation "is not a benign treatment," it
nonetheless recommended "careful, rigorous, and scientific
investigations of chelation when used in children with
neurodevelopmental disorders, especially autism."

That report was issued on October 1, 2001, nearly four years ago.
But few paid attention to the recommendation, and no one did the
hard science on chelation. This left parents and doctors flying half-
blind in pursuit of chelation -- not out of "desperation," but out
of strong evidence their children had suffered from mercury exposure.

Just think, if the government had listened to the very IOM report it
commissioned back in 2001, we might know a lot more about chelation
and autism than we know today. If clinical trials had gotten
underway then, we would know with certainty whether chelation could
heal, or kill.

If hard scientific proof had been uncovered that chelation was 100-
percent worthless in the treatment of autism, no parent or doctor
would still be pursuing the therapy today. If evidence had surfaced
in clinical trials that children could be harmed or even killed by
chelation, no one would be using it today. The doctor in
Pennsylvania would have halted chelation therapy long ago, and this
poor grieving family would never have crossed the ocean from the UK
in pursuit of its false promise.

But what if the opposite were true? What if the "rigorous science"
recommended by the IOM had yielded proof that chelation can indeed
help some kids -- provided that it's done with the safest agents, at
the safest doses, and through the safest routes of administration
(not to mention in combination with other therapies)?

Either way, if America had done its scientific homework, as
recommended by its top science professors, Abubakar might still be
alive today.

If chelation is quackery that kills, let's outlaw it today. But if
it can be done safely, with demonstrated clinical benefit to some
autistic patients at a minimum of risk, then it should be approved
by the FDA for the treatment of autism.

Does chelation in autism kill or cure? Only hard science will answer
that question. What a shame we have wasted four long years not
finding out.

In Defense of My Ire

Yesterday in “A Potential Much Brighter Than Our Fears”, Kathleen Seidel wrote about Leo Kanner, Dan Olmsted and Donald T. She used my mini-rant and subsequent comments about the story as a launching point. She made the case that my rage against Kanner is misplaced. Please allow me a little further defense of my anger and a little of my own perspective on Dan Olmstead’s reporting.

In her piece, Kathleen takes the position that Dan’s reporting and Donald’s brother’s memory may not be an accurate account of what happened to Donald when he was 12. I certainly recognize her the right to go back and question all that has been reported to see where the published story could have changed in the last half century, but for the purposes of this discussion, I am going to go ahead and assume that the story is a basically accurate one until we have any evidence to think otherwise.

Looking around, I seem to be the only one who is so upset with Kanner for not giving Donald’s medical treatment the consideration it deserved in assessing his considerable improvement from his ‘nervous condition’. I think my anger at him for this stems more from a professional place than the place of a parent, although the two together are a potent combination.

As I have mentioned elsewhere, I am a former marriage and family therapist and earned my masters degree at Johns Hopkins. I also worked there as a grad student, doing my practicum in the psychiatry department working in an outpatient program for adolescent substance abusers.

With my professional history, I feel able to put myself in Kanner’s shoes, in a basic way, in that I treated 12 year olds at Hopkins, and I know what a huge responsibility it is. My criticism of him I believe is founded because I know how irresponsible it would have been for me if I had done a history on a patient, and not to included something so vital as a the near death, extensive medical treatment and subsequent vast improvement of two very serious medical conditions, of said patient.

If I took patient histories this seriously as a 27 year old grad student getting her masters, then Leo Kanner, seasoned Medical Doctor and Psychiatrist, sure should have taken it all the more seriously.

If I went to the home of a patient to do follow up after not seeing him for a few years, and noted that he had managed to kick heroin in during a break in drug treatment, after a change in living arrangements and after a three month hospitalization for a life threatening illness, and I only reported the great living arrangement that he was in, I would not be doing my job. It could end up harming the patient, his family and heroin users every where who could be offered a treatment that might have stemmed from what ever medical treatment could have sped his recovery.

Is there a new medical treatment that can help heroin users kick the habit? Who knows? Ginger didn’t write it down, so no one looked into it.

Even if the family had not mentioned the hospitalization or attributed his recovery to it at the time, it would still be my responsibility to get a hold of his medical records even if only to assure continuity of care. This would be so much more true of Dr. Kanner as he defined autism and therefore took responsibility for every aspect of the diagnosis and all of the subjects that he took under his care. Add to the fact that he was a Doctor at Hopkins in the first half of the 20th century, when doctors were considered godlike and few people questioned them, and his breach becomes all the more egregious.

In defense of Kanner, I don’t think that he was a heartless parent-basher and he should not be placed any where near Bettelheim who destroyed so many lives and families. I just don’t think that he was thorough enough at a moment where it really, really counted. He made a freshman mistake that cost many people dearly and left the door open for Bettelheim.

In further defense of Kanner, I have not read his follow up paper that is referred to above, and I am taking the word of Olmsted and others who have written about it. I tried to read it last week but got so emotional about what happened to these children and couldn’t continue. I will reserve the right to amend my judgment of Kanner after I get the guts to read his paper. With learning of the death of Abubakar yesterday, there is not a chance that I will be able to do this for at least a few weeks. I am much too raw to take that on right now. I hope you will excuse my less than thorough research before writing.

Now onto Dan Olmsted’s less than thorough research before writing.

His decision at the beginning of the year to take nothing for granted and start from scratch in his investigation has broken new ground in the understanding of autism. We can certainly discuss his biases and any unintended consequences of his reporting, but I personally don’t hold him to the same level of accountability as I do Kanner. He is a reporter and his job is to tell as much of the story, as objectively as possible. We can certainly discuss how objective he is, but we should keep in mind that in the autism debate, almost no one can claim objectivity. However, even if you question his motives, no one can deny that he is telling as much of the story as he can find. In that respect he is doing his job very well.

The criticism of Olmsted for seeking out Donald’s brother seems to me a theoretical discussion on patient privacy until we know whether or not Donald gave his brother permission to give the interview. It could be that Donald did not want to talk to reporters himself, but that he didn’t mind his brother talking to Olmsted.

In respect to gold, I did not read his discussion of how the gold salts treatment may have impacted his ‘nervous condition’ as a recommendation for parents to run out and try gold on their children, but merely as a discussion of how gold may have made a change in this specific case and what that might tell us about autism and its potential treatments. What I took away was not that gold could mitigate my son’s autistic symptoms, but that Donald’s treatment represents another case that points to the toxicological and autoimmune features of autism.

I don’t see gold as the answer to my son’s autism any more than I see kitchen mold as the answer to his ear infection. But the happy accident of a moldy petri dish in 1928 has lead to hundreds of antibiotics to treat everything from a skinned knee to anthrax. The happy accident of Donald’s recovery might have meant the same for autism, had Kanner written it down.

If it had come to the attention to the medical community that gold salts had improved autism, then it autism may have been recognized as an autoimmune disorder long before the 21st century. It may have also have shed light on how the body’s immune system works and how autoimmune responses are triggered, giving immunologists information that could have moved the entire field forward. It could have led to a better understanding of toxicology and how heavy metals could contribute to neurological disorders, and lead may have been removed from paint decades earlier than it was.

At the very least, we may know what autism, in all its forms, is by now.
If that were the case, it very well may be that there would be no divide between the neurodiversity and biomed communities, as we might know how much of ‘autism’ is a metabolic disorder and how much is just who that person was born to be.

Would any of these things happened? Who knows? Leo didn’t write it down.

Kathleen ends here piece with these two thoughts:

Although Dr. Kanner was not omniscient (what human is?), there is no need to rage at him.

Dr. Kanner is of course subject to human error and should ultimately be forgiven for his mistake. I am working on that, and my anger at him is subsiding. But no matter the emotional reaction of his critics, the fact still stands that he made a costly mistake.

Rather, the story he told of his patient, Donald T, should reassure parents that our autistic children have potential much brighter than our fears.

The title of Kathleen ‘s piece is beautiful.

I love being told that many of the fears I have for my son will likely fall away as he grows and becomes the man that he will be. I am grateful for the much needed reminder. Donald’s story does give me hope, although I want to point out, that it is hope that he will respond as positively to a medical treatment as Donald did.

Ironically, the thing that gives me the most hope is the existence of the Nurodiversity Community who so often strongly oppose parents like me and even, on a few occasions, me specifically. The attacks from this group sting sometimes, but they show me if that if medical treatment is not fruitful for my son, he still may be able to grow up to advocate for himself. It is an odd thing to take such comfort in such criticism, but I will take the comfort from where ever it comes. Thank you.

August 25, 2005

Boy Dies During Chelation

This sad story came out yesterday.

A few points that were not in the article:

There are several different types of chelation, DMSA, EDTA, DMPS and ALA, and they are administered in several different ways, oral (capsule or powder), transdermal (lotion) and intravenously.

(We have chosen oral DMSA as it is the safest approach with the longest treatment history, and we have given Chandler long breaks in between with mineral supplementation to replace the essential minerals that can be stripped away with the toxic metals.)

Dr. Jacquelyn McCandless reports that the boy had an allergic reaction to EDTA, but I don’t know if she has some inside information, or if this is her professional opinion based on her practice. If that is the case, this may be an isolated incident, but much more information needs to be released before we can draw to many conclusions.

It has been reported that this is the first case of a child dieing during this process, but I am sure that we will have to wait to hear the final word on that as well.

IV EDTA is not a DAN approved method of chelation, nor was Dr. Kerry a DAN doctor. It has been reported by parents who have worked with him that he is considered a good doctor.

IV EDTA is an FDA approved treatment for metal poisoning and has been for decades. It is a more aggressive form of chelation, and apparently is used most often for serious lead poisoning. If this is what Abubakar had, then despite his autism, as long as the treatment was administered properly (I have heard that IV chelation should be done in hospitals), this would seem a case of an unforeseen reaction to an appropriate treatment. The comparison to vaccine injury has been made by parents in the autism community.

Despite all this, Abubakar’s death illustrates the caution that should be used in approaching chelation.

This episode presents so much information for discussion, and will be investigated and analyzed by the medical and autism communities in depth as details on exactly how and why this happened emerge. Other discussions of the incident can be found here.

While we are waiting for that important information, here is something that should be discussed.

I see this as, among other things, a further indictment of the FDA and the CDC. As I mentioned redundantly in my post, File under: Things That Call For A CDC Study, the health authorities have not, and have no plan to, study chelation for autistic children with metal poisoning.

In that post, I originally wrote that DMSA was only available by prescription, but in the last week I found out that it, along with EDTA, are over the counter drugs.

So... FDA… which is it? Is chelation a potentially dangerous procedure that should only be done under a doctor’s care in a hospital setting? Or should we consider it as safe a cold medicine?

Is mercury safe enough to be injected into babies at 100x the EPA limit? Or is it dangerous enough to shut down an entire school and call in a hazmat team to clean up a dime sized spill?

Will you please give us researched, parsimonious information on autism, metal poisoning and their potential treatments?


Will the death of this child spur health authorities to safety and efficacy studies on the effect that different forms of chelation of metal poisoned autistic children? Or will they just react by saying that this treatment should not be done with out even looking into it?

I want to again call on the FDA and the CDC to DO THEIR JOB and give us guidance on how to treat our children.

UPDATE: Abubakar Tariq Nadama's death was a medical accident. The wrong drug was administered (Disodium EDTA rather than Calcium EDTA) and no one caught the error before it was given to Abubakar.

August 23, 2005

Seeking Stories from Parents

From Bonnie Sayers at Bella Online

A Cup of Comfort seeking submissions from parents of children on the Autism Spectrum

This call for submissions has a deadline of November 15, 2005. A Cup of Comfort seeks honest, original stories from parents and family members of children on the Autism Spectrum. This includes Asperger's Syndrome, Rett's Syndrome, Pervasive Development and Disintegrative Disorder.

They review submissions throughout the timeline. They do list some possible themes of interest, but are not limiting submissions to just these stories - effective treatments; reasons for hope; adult children with autism, breakthroughs; impact
on other family members.

A Cup of Comfort will also consider stories submitted by professionals with intimate knowledge of the child and parents in
question. There will not be an acknowledgement or receipt of your submission due to the number of responses they receive. It is also noted that manuscripts are not returned. Submissions can be mailed, faxed or emailed, which is the preferred mode of submission. There is no cost incurred for submitting your story. You must cut and paste the story into the email, do not send any attachments. The site gives clear instructions on what to include in your submission and what to state in the subject line.

The story must contain between 1,000-2,000 words and be written in the first or third person. " For this inspirational volume, we seek personal anecdotal stories (not prescriptive articles) about the unique aspects of parenting a child with autism and related disorders." The stories need to be uplifting and in English. It is also mentioned on the site that some previously published material is acceptable. You are free to submit more than one story for any publication.

"A Cup of Comfort is a bestselling anthology series featuring compelling true stories about the experiences and relationships that inspire and enrich our lives. These engaging personal essays — written by people from all walks of life — are carefully selected for inclusion in A Cup of Comfort based on originality, creativity, emotional impact, and substance."

If your story is selected as a finalist you will be mailed a publishing agreement. The website - www.cupofcomfort.com will post a list of the contributors for A Cup of Comfort for Parents of Children with Autism on the site and the grand-prize
wining story. This winner also receives $500 on publication and a complimentary copy of the book. All other stories in the book will receive $100.00 each and a copy of the book as well.

I am very excited to learn about this book and plan on submitting a story or two myself. I encourage all parents and especially those with adult children to start composing your true stories sharing the tales of raising your child to help benefit other parents and professionals.

The site also has samples from other A Cup of Comfort books to help get a feel for what stories they accept. Books cost $9.95 at the site and can be ordered over the phone. Learn about previous contributors and visit Amazon.com to read the positive reviews on any number of A Cup of Comfort books.

I am looking forward to this process and hope to hear from other parents in the Forum. Let's brainstorm together and if need be assist others in proofreading submissions.

Good Luck to all who take part in this endeavor and submit their story.

A Cup of Comfort Writer's Guidelines

So skoot on over to Bonnie's place to work on your story.

August 22, 2005

Gold

The Age of Autism: Gold?
By DAN OLMSTED

Why would treatment with gold help someone with autism?

That is the question raised by The Age of Autism's report last week that the first child ever diagnosed with the disorder appeared to improve significantly after treatment with gold salts.

We've heard from a number of readers -- some with autistic children they're trying to help -- asking the same question.

So far, we've found a couple of possible explanations, both courtesy of those who believe autism is triggered by some sort of toxic exposure in susceptible children. The idea -- dismissed by federal health authorities -- is that the culprit in autism is the mercury preservative that was used in vaccines or, in some cases, the actual vaccines themselves.

That first autism patient, known as "Donald T.," is now 71 and lives in the small Mississippi town he grew up in. Diagnosed with autism at age 5, he had a life-threatening attack of juvenile arthritis at age 12, according to his brother; his temperature spiked uncontrollably, his joints stiffened and were extremely painful. He stopped eating.

"It looks like Don's getting ready to die," his father told a small-town physician after specialists failed to diagnose the ailment or find an effective treatment. That doctor suggested it might be juvenile arthritis, and after treatment with gold salts at a Memphis clinic, Donald's autism as well as his arthritis improved.

Injectable gold salts -- sodium aurothiomalate -- were used to treat arthritis because they have anti-inflammatory properties.

"He had a miraculous response to the medicine," his brother told us at his Mississippi law office. "The pain in his joints went away. When he was finally released, the nervous condition he was formerly afflicted with was gone. The proclivity to excitability and extreme nervousness had all but cleared up." Donald also became "more sociable," he said.

We couldn't find any record of that in subsequent writings about the first patients with autism. Instead, the child psychiatrist who diagnosed those cases attributed Donald's remarkable success in life -- he belonged to a college fraternity, was a bank teller and now, in retirement, travels the world -- to four years he lived with a "wise, intuitive" farm couple.

An alternative explanation -- biomedical rather than behavioral -- involves the body's immune system as a triggering agent of autism:

-- Start with the idea that gold salts reduce the autoimmune response that causes juvenile arthritis. Although the mechanism is unclear, they appear to do so by suppressing a type of immune-signaling cell called cytokines.

-- Brain cells called microglia produce a specific type of cytokine, which can be activated in the presence of mercury or neurotoxic viruses including measles. That type of cytokine has been found on autopsy in the brains of people with autism.

-- The cytokines that are produced chronically in an autoimmune condition may contribute to neurological problems, including oxidative stress, overstimulation of brain cells and abnormal growth signals during development.

So the state of immune activation that is present in juvenile arthritis may contribute in parallel to autistic symptoms. Suppressing the immune activation, as gold salts do with arthritis, may have additional benefits on the autism-symptom side.

We found a version of this idea in a 2002 report by the Meridian Institute, titled "Gold and Its Relationship to Neurological/Glandular Conditions."

The four authors suggest that a useful experiment would be "attending to the side effects of gold medications in cases where there is co-morbidity of rheumatoid arthritis and a neurological, psychiatric, or glandular disorder. For example, one could ask, do patients with epilepsy, depression, or adrenal insufficiency who may be receiving gold for arthritis show any improvement in neurological/glandular symptoms?"

One could just as well ask: How about patients with autism? That experiment may inadvertently have taken place in Mississippi in 1947. Subject: Donald T.

Gold and other elements have been used since antiquity as "nervines" to treat mental conditions. The authors note that lithium is an element that has proven highly effective against bipolar disorder.

"It is clear there is a long tradition of gold as a nervine," they write. "But there were no multi-center clinical trials; that is a modern phenomenon. There were only observations and reports of individual cases."

They quote a 1983 study on animals that showed gold "localizes in nervous system tissue." And they cite a small, preliminary 1996 study that showed after four weeks of colloidal gold treatment, IQ scores increased dramatically in test subjects.

"While a study of this small size is very preliminary, it is encouraging evidence of the potential of gold as a nervine, and as a demonstration of a non-toxic preparation," they wrote.

In the next column, we'll look at how the controversial treatment called chelation might fit with all this.

--

E-mail: dolmsted@upi.com

Terbutaline's Contribution to Autism

Terbutaline is a new piece of the autism puzzle, and I am learning how exactly it fits into the picture in Chandler’s autism. Duke University says that it has a causal link to the disorder, and it does so by making the brain more vulnerable to toxins. In the case of the Duke Study, the toxin that they identified was a pesticide. I don’t know if they looked at increased risk of mercury toxicity, although it seems logical that if the brain has been made vulnerable to one kind of toxin, increased vulnerability to all is possible/probable.

I had not heard about the Hopkins twin study.

If you are a terbutaline mom, you might want to take a listen:

- Terbutaline and autism connection? Listen to Dr. Larry Kaplan on AutismOne Radio, Tuesday, August 23rd at 10:30 am ET. (http://autismone.org/radio/)

- Is there a connection between the pre-term labor drug Terbutaline and autism? To
find out additional information about this controversial issue, listen to AutismOne radio at http://autismone.org/radio/ this Tuesday, August 23rd at 10:30 am Eastern Time. Teri Small interviews Dr. Larry Kaplan to discuss this off-label drug prescribed for pre-term labor. Hear the facts about maternal, fetal, and neonatal side effects, the Johns Hopkins study of fraternal twin pairs, and the Duke University study.