Wednesday, February 6, 2008

another blog comment on autism

This item was emailed to this blog--AR

I have to say, Fogarty, Haley, Ayoub and Engley are undoubtedly on to something. As a mom who loves and cherishes ALL FOUR of her children, I am very willing to listen to the facts and do what I can to TREAT and/or RECOVER my son.

I do hang on to hope...I have to. I admit, when my son was first diagnosed, and I heard some of the crazy ideas about NUTRITION and VACCINATIONS affecting these kids, I thought it was ludicrous. However, since truly looking AND listening, I have done a complete "180". The evidence is overwhelming and irrefutable. As a health professional - but more so as a parent - I won't close my eyes and refuse to believe what's right out in front of me just because the bureacracies in our country are in denial.

I accept and embrace my son AS IS, but what kind of a mother would I be if I wasn't ready to look at ALL TREATMENTS with an open mind?

Tricia Kiefer, RN BAN
Nurse Manager, Birthcenter One


14 comments:

Anonymous said...

Are you aware of any credible studies which show that chelation cures autism?

Tricia said...

In fact, I am.

I think if you read through all of the posts on this blog, it is QUITE obvious that what these kids need is what Dr. Fogarty has demonstrated.

NOTE: refer to the SUNY Buffalo study.

Anonymous said...

Do you have a link? A Google search turns up nothing. Is it a controlled study?

It's fine to be open to the possibility that a treatment might help. I'm willing to check out the evidence. But why not also be open minded about the fact that again and again other treatments have been thought to help and then been found to be only placebos? Why not be open minded about the scientific fact that developmental progress is the norm rather than the exception in autism?

Anonymous said...

Tricia, so is there a link or not? You're going to force me to think you made it up, though I'm currently open minded about the possibility that you did not.

Tricia said...

It's there. I don't think you've really read through much of this blog and all of Dr. Fogarty's
incredible understandings of this most complex situation. The entire
abstract is up on this blog somewhere back a few posts. I'm sure its hard for you to keep track of what's actually been presented because all it seems you want to do here is (unsuccessfully) debate Dr. Fogarty. Pay attention, Joseph.

Anonymous said...

I did end up finding the study. It's Patel & Curtis (2007), which Fogarty had posted in this blog previously.

It's (surprise surprise) a non-controlled study, involving 10 children, published in the Journal of Alternative and Complementary Medicine. As any non-controlled study of anything in autism (e.g. a non-controlled study of Secretin) it finds that the children "improved."

What can we conclude from such a study? Frankly, absolutely nothing that wasn't already known. We need to see group differences to draw any conclusions.

I just wasted about 15 minutes looking into this.

Anonymous said...

Joseph,

I don't disagree that in many kids developmental progress is happening without biomedical interventions who are not too deep into the spectrum (many food sources have a weak chelation effect, including fiber from shellfish-chitosan). There are some really simple-stupid things to improve behavior in children though that busy pediatricians won't look into because they are so conditioned to fear words like chelation, nutragenomics, omega-3 fatty acid supplementation, wide spectrum mineral supplement, leaky gut syndrome and bacteriotherapy. Most in medicine are actually too simplistic to understand that autism is a multi-system disorder that affects the brain rather than a primary brain disorder.

Accelerating development after initial delays is the point here. Most of the people in position to do an appropriate controlled study can't get big bucks for a large chelation protocol study-unfortunately too much culture bias against it in the establishment.

Ironically the government is going to chelate all of us in a city affected by a dirty bomb- YES the government is hoarding chelation agents for treatment.

These kids are chronically accumulating molecular trash because of their genetic polymorphisms and physicians need to help pull it out. In the molecularly impaired detoxifiers, vaccines are the early dirty bombs starting this process. THERE IS NO DEBATE-A METAL DETOXIFICATION IMPAIRED INDIVIDUAL SHOULD NOT GET INJECTABLE HEAVY METALS. This is the biggest mistake of medicine since we were all smoking in the hospitals saying-there's no association with smoking and cancer or lung problems. This profession in each generation has its mea culpa-this is it: AUTISM-VAX connection. The syndrome is promoted by iatrogenesis and misunderstanding of the role of vaccines in those who are not equipped biochemically to deal with the current high dose vax schedules. Like Semmelweis, Ayoub and Haley will be respected 1000 times more than they are now. Like Teddy Roosevelt, I am gonna rough ride this into medical consciousness so that each child with autism can get a SQUARE DEAL. The answers to this problem are ALL OVER THIS BLOG.

I know Joseph, this is hard to understand from a lay perspective and even most in medicine aren't really capable of giving the learning issues here the appropriate time because it would mean going back to the forgotten biochemistry that 99% of US MDs never really learned well enough in the first place.

Good luck trying to act like you are interested in helping these kids. Its clear that you and ANB as well as others are not. If you have a child like ANB that was not helped by some of these approaches, thats unfortunate, but it has more to do with not being with the right geniuses in medicine on this more than anything.

People like these guys>
http://anon.autismri.com.edgesuite.net/anon.autismri/RecoveredChildren/AutismIsTreatableVideo-highband.wmv

Interested parents, visit Autism Research Institute for more information on how to begin to help your kids because no one in establishment medicine is unless you happen to be an MD and you have successfully lobbied one of your friends and colleagues by two years of combined learning on this.

My son has a genius pediatrician who is now treating him with . . chelation-oh I said it that horrible scary word which has cause a few more deaths in the hands of establishment MDs in hospitals than in the alternative crowd (see my PS). He is part of the leadership of the AAP in the northern plains. Unfortunately parents without MDs who are trying to get help fromt heir AAP establishment pediatricians will be laughed out of the clinic.


Edward F. Fogarty, III, MD
Chair of Metals Tracking Technology in Medicine at UND SOM
(that would be "RADIOLOGY" for the unenlightened)




1: Pediatrics. 2006 Aug;118(2):e534-6.

Deaths resulting from hypocalcemia after administration of edetate disodium:
2003-2005.

Brown MJ, Willis T, Omalu B, Leiker R.

Lead Poisoning Prevention Branch, Division of Emergency and Environmental Health
Services, National Center for Environmental Health, Centers for Disease Control
and Prevention, Atlanta, Georgia 30341, USA. mjb5@cdc.gov

From 2003 to 2005, deaths of 3 individuals as a result of cardiac arrest caused
by hypocalcemia during chelation therapy were reported to the Centers for Disease
Control and Prevention. Two were children, both of whom were treated with edetate
disodium. At the time of this writing, the adult case was still under
investigation. No previous cases of death resulting from hypocalcemia during
chelation have been reported. From our experience and review of the literature,
we suggest that health care providers who are unfamiliar with chelation consult
an expert before undertaking treatment and that hospital formularies evaluate
whether stocking edetate disodium is necessary, given the risk for hypocalcemia
and the availability of less toxic alternatives.

Publication Types:
Case Reports

Mesh Terms:
Autistic Disorder/drug therapy
Calcium/administration & dosage
Chelating Agents/administration & dosage
Chelating Agents/adverse effects*
Chelating Agents/therapeutic use
Chelation Therapy/adverse effects*
Child, Preschool
Death, Sudden, Cardiac/etiology*
Drug Therapy, Combination
Edetic Acid/administration & dosage
Edetic Acid/adverse effects*
Edetic Acid/therapeutic use
Fatal Outcome
Female
Humans
Hypocalcemia/chemically induced*
Hypocalcemia/complications
Hypoxia-Ischemia, Brain/etiology*
Infusions, Intravenous
Lead Poisoning/drug therapy*
Male
Medication Errors*
Middle Aged
Naturopathy
Risk Management
Sodium/administration & dosage
Succimer/administration & dosage
Succimer/therapeutic use

Substances:
Chelating Agents
Succimer
Edetic Acid
Sodium
Calcium

PMID: 16882789 [PubMed - indexed for MEDLINE]




The paper above documents the deaths of 2 kids and one adult. A 2 year old in a US hospital from chelation therapy as well as the 5 year old alluded to on posts in late December. Thats one death for the establishment that got no press and one death for autism treatment that got tons of fear-mongering people like ANB and Joseph their ammo.

Slow chelation is safe at small doses from absorptive not injected routes. I perform low dose-pre-chelated metal administered IV chelation related to imaging exams everyday-I know the science behind this on a biochemical level. US Pediatricians who are telling patients that there is nothing to be done here don't know enough science to say that and they will be in the next decade risking a FAILURE TO TREAT. Cutting edge practice like that at the Thoughful House and in Florida by Drs. Kartzinel or Bradstreet will slowly change the stnadard of care only because of the great resistance to treating metals handling problems in these kids because it is INDIRECT EVIDENCE THEY NEVER SHOULD HAVE GOTTEN INJECTED WITH MERCURY OR ALUMINUM. . . it so annoying that pediatricians keep referring these kids to developmental specialists who are too lazy and inhibited to do anything for them.

Joseph-be a man and give your full name and station in life why you are interested in this. Its obvious you have been following this blog long enough to know better than to ask the questions you did in that last post- did you think I would let that go?

Anonymous said...

EFFIIIMD: In your view, was Roy Kerry one of these genius doctors who decided to treat autism with chelation?

They are such geniuses of such incredible intellectual superiority that they don't even need controlled randomized studies to know "the truth." They just infer it.

BTW, I have a young autistic child. And of course I want a good outcome for my kid. However, I don't think pseudo-medical anti-scientific mumbo-jumbo "alternative" medicine crappola will help anyone achieve a good outcome, but is instead a harmful diversion.

Anonymous said...

"If you have a child like ANB that was not helped by some of these approaches, thats unfortunate, but it has more to do with not being with the right geniuses in medicine on this more than anything."

Hard to blame my parents for that - I grew up in the 60s.

Autism News Beat said...

Kev, is it true your blog gets about 3,000 to 5,000 visitors a day? I remember hearing somewhere that LBRB is the number one autism blog on the net. That's pretty cool!

Ted, you should be pretty excited about this. Betcha didn't think your 15 mins of fame would come so soon. You're probably calling all your peeps at UND SOM right now!

Anonymous said...

Kristina posts on my blog all the time! I had no idea!

Anonymous said...

ANB, Kev, Joseph, you guys are great for this debate. Little busy here in ND as a guy who works harder than any academic radiologist in the US and is a department chair, so we'll get to all your finer points in a few posts rather than one long one that loses your attention.


Kev:
Here's your credibility issue>>
"In my opinion, anyone who seriously thinks that the US gvmt is stockpiling chelation or that vaccines are dirty bombs is completely without credibility."

I doubt any of you are physicians with an understanding of radiobiology so you wouldn't know this. If there is a radiological crisis in North Dakota I will be called upon as to help in the situation (in ND most MDs have to wear many hats since our state is so small).

Here is a nice little slide show on the issue, and the need for DTPA in a radiological crisis from right out of the SHOW ME state:
www.bioterrorism.slu.edu/radiological.htm

Here's the stockpile:
http://www.fda.gov/bbs/topics/news/2004/NEW01103.html

EFFIIIMD
Back with more later . . .

Anonymous said...

I see this faulty logic applied all the time in the autism debate. Treatment X is approved for condition Y, therefore it must work for autism.

If chelation cured autism, then why are there no credible studies? How could mainstream medicine overlook something so obvious? It doesn't make sense to me, but then again, I'm not a radiologist.

Anonymous said...

Visitors-please read through other posts as it is abundantly clear these guys don't have a chance in this debate on how to improve the neurological health on US children as relates to this debate. But I continue for the sake of honoring the fight despite the attacks and for the improvement of society.


Sorry Kev, I left out this site on the SNS or Strategic National Stockpile:
http://www.bt.cdc.gov/stockpile/
That above site is the general piece.

Now download this
www.hhs.gov/budget/09budget/asprfy09opa.pdf
and note the following on page 11:
" DTPA is udes to protect against transuranic radioactive particles such as plutonium, americium, and curium. The SNS currently holds more than 450,000 doses of an injectable form o DTPA acquired through Project BioShield in 2006"


Kevin your daughter doesn't have regressive autism so chelation in that population of autistics would be inappropriate. Your angst is understandable since your crowd of autistic children needs even more research more on the genetic side and this debate does impair children with more direct genetic routes into the specrum from getting help, but instead of being a divider you ought to pay attention to what is happening in those with regressive autism as they are the loud mouths that have got people in society even knowing what your daughter faces.


You guys are making my points for me, the early work is being done on chelation.
As we would all surely agree, we need large controlled trials for regressive autism associated with deficits in sulfation and methylation-this is one of the major arms of the syndrome in regressive autism-certainly not all children with autism. The French, who have awarded MS victims compensation for Hep B vaccine injury seem to be ahead of anglo-medicine here see the abstract way below.

In the US the work of Jill James, PhD shows in conjunction with approach from the SUNY Buffalo paper, that it is time to select the poor metal detoxifiers for a large controlled study.

Mainstream medicine overlooks this approach as it paints the guilty right into their corner on this connection between autism and vaccines that is so obvious in the Simpsonwood documents.


If you are a heavy metal impaired individual, an injected toxic metal is a problem.
Kev, I am glad I got your Irish up on that dirty bomb analogy (lets not forget all the celtic blood in the brits who have tried so hard to destroy their neighbors, I am glad this country revolted against yours and that ocean kept freedom alive and away from British Imperialism).
So in the select population of people who are slow metal detoxifiers, injected heavy metals really "dirty" up their cellular biology, and "bomb" their neurodevelopment.

Lets do some molecular math again:
NOTE THE USE OF DMSA-a chelator to improve clinical indicators of metal toxicity in these kids.

1: Toxicol Appl Pharmacol. 2006 Jul 15;214(2):99-108. Epub 2006 Jun 16.

Porphyrinuria in childhood autistic disorder: implications for environmental
toxicity.

Nataf R, Skorupka C, Amet L, Lam A, Springbett A, Lathe R.

Laboratoire Philippe Auguste, Paris, France.

To address a possible environmental contribution to autism, we carried out a
retrospective study on urinary porphyrin levels, a biomarker of environmental
toxicity, in 269 children with neurodevelopmental and related disorders referred
to a Paris clinic (2002-2004), including 106 with autistic disorder. Urinary
porphyrin levels determined by high-performance liquid chromatography were
compared between diagnostic groups including internal and external control
groups. Coproporphyrin levels were elevated in children with autistic disorder
relative to control groups. Elevation was maintained on normalization for age or
to a control heme pathway metabolite (uroporphyrin) in the same samples. The
elevation was significant (P < 0.001). Porphyrin levels were unchanged in
Asperger's disorder, distinguishing it from autistic disorder. The atypical
molecule precoproporphyrin, a specific indicator of heavy metal toxicity, was
also elevated in autistic disorder (P < 0.001) but not significantly in
Asperger's. A subgroup with autistic disorder was treated with oral
dimercaptosuccinic acid (DMSA) with a view to heavy metal removal. Following DMSA
there was a significant (P = 0.002) drop in urinary porphyrin excretion. These
data implicate environmental toxicity in childhood autistic disorder.

Publication Types:
Comparative Study

Mesh Terms:
Administration, Oral
Adolescent
Autistic Disorder/diagnosis
Autistic Disorder/etiology
Autistic Disorder/urine*
Biological Markers/urine
Chelating Agents/administration & dosage
Chelating Agents/therapeutic use
Child
Child Development Disorders, Pervasive/diagnosis
Child Development Disorders, Pervasive/etiology
Child Development Disorders, Pervasive/urine*
Child, Preschool
Chromatography, High Pressure Liquid
Coproporphyrins/urine
Environmental Exposure/adverse effects
Environmental Exposure/analysis*
Female
Humans
Male
Metals, Heavy/antagonists & inhibitors
Metals, Heavy/poisoning
Metals, Heavy/urine
Porphyrias/complications
Porphyrias/urine*
Porphyrins/urine
Retrospective Studies
Succimer/administration & dosage
Succimer/therapeutic use
Treatment Outcome
Uroporphyrins/urine

Substances:
Biological Markers
Chelating Agents
Coproporphyrins
Metals, Heavy
Porphyrins
Uroporphyrins
precoproporphyrin
pentacarboxylic porphyrin
Succimer

PMID: 16782144 [PubMed - indexed for MEDLINE]

Its time for these big controlled studies that you guys are calling for, isn't it?
I see this lack of science understanding in "bone fide" researchers all the time, not just you guys. Wait until I pubish an exchange between me and the dumb response of a world class Mayo clinic autism specialist.
Really, give it up guys no one knows as much as me on this in medicine, you can't hang with me.
Nor can anyone in the establishment which is why UM J school can't get me in a round table discussion with Dr. Miles. Anyone who has seen this blog and knows enough science, knows the are messing with the wrong Bull Moose.

The real fact is chelation science has been understudied for political suppressive reasons, these compounds are not patentable.
PS: Kev, a bunch of Iraqi children love me, I am sure your family and you would too if you really knew me:
http://www.kfyrtv.com/news_stories.asp?news=10016