Re: [SPAM] DAN DR

[Guest guest]

Here is just a question, in no way am I implying that these things don't

work or have not worked for some children. My son has PDD NOS and Apraxia, he

is four. Our Autism specialist was here today and we were talking about the

tests and different therapies that are all within the scope of DAN DR's She told

me that DAN DR's feel that they can cure Autism. I didn't know that this was

true. She just mentioned not to go into the appointment thinking that

everything they recommend is going to work. She said to be sure that you trust

everything that is recommended is safe. Not all things that Dr's recommend

can be safe. I think we have yeast issues, and I want to make sure that all

his dietary issues are in order. She did tell me that some of the things that

can be recommended actually can be dangerous to a child. I am not looking

for a debate or for anyone to get defensive when I say this, she did say the

things recommended could work for maybe one child and not another, or a certain

supplement could help one child but not another. I know that these

therapies and tests are very expensive. I won't get into the specifics of the

things

she said could potentially be dangerous, but has anyone had any negative

experiences, or recommendations from a DAN Dr that they didn't think was wise

to

put their child through, just because something is suggested doesn't mean it

is safe. Just wondering, any thoughts.

**************Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)

[Guest guest]

Absolutely consider her suggestions. Always research treatments that

someones suggests doing to your child no matter if a DAN, MD, parent,

patient, or another treatment provider. I only wish I had done this

before I blindly let our pediatrician vaccinate my kids!

She is absolutely right, just because something is suggested, does not

mean it is right. And true, what may be right for your child may not be

right for another. Research, and research, and then let your instincts

be your guide. And the part she says about autism being

curable...definitely true. I have two kids that are recovered from

autism. I also have one cured of verbal apraxia. And another one cured

of chronic fatigue and learning delays. Thousands of parents are on this

journey. Check out stankurtz.com, the Autism Research Institute,

TACA, The Thoughtful Center for Children and a host of groups of

parents on . We have not done any interventions that were risky.

Complete diet changes and a few supplements and we are a new family.

You should do lots of research first and then go to a DAN! and be sure

to ask around and research one that you feel will work for your family.

All the best,

Helpful to join. Check out their links and files too.

mb12 valtrex

chelatingkids2

thoughtfulhousecenterforchildren

vitamink

peacanbread

autism treatment

jennyjudy@... wrote:

> Here is just a question, in no way am I implying that these things don't

> work or have not worked for some children. My son has PDD NOS and Apraxia,

he

> is four. Our Autism specialist was here today and we were talking about the

> tests and different therapies that are all within the scope of DAN DR's She

told

> me that DAN DR's feel that they can cure Autism. I didn't know that this was

> true. She just mentioned not to go into the appointment thinking that

> everything they recommend is going to work. She said to be sure that you

trust

> everything that is recommended is safe. Not all things that Dr's recommend

> can be safe. I think we have yeast issues, and I want to make sure that all

> his dietary issues are in order. She did tell me that some of the things

that

> can be recommended actually can be dangerous to a child. I am not looking

> for a debate or for anyone to get defensive when I say this, she did say the

> things recommended could work for maybe one child and not another, or a

certain

> supplement could help one child but not another. I know that these

> therapies and tests are very expensive. I won't get into the specifics of

the things

> she said could potentially be dangerous, but has anyone had any negative

> experiences, or recommendations from a DAN Dr that they didn't think was wise

to

> put their child through, just because something is suggested doesn't mean it

> is safe. Just wondering, any thoughts.

>

>

>

> **************Ideas to please picky eaters. Watch video on AOL Living.

>

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

> 2050827?NCID=aolcmp00300000002598)

>

>

>

[Guest guest]

If I were you I would hug that person. There is a lot of hope for all

the things that ail our kids but getting there safely is the key.

Yeast, for example. Treating it can be done by many means...it is

best though to get an idea of why it is there and where the problem

is (systemic or in the gut) before proceeding with treatment. Yeast

can also be treated by a mainstream Dr. and not a DAN. In fact a lot

of this can be. These things are tricky because the DAN system is new

and they are more willing to research it but it is not formally

studied together and that makes everyone nervous. Also, there are 600

DANs but not all treat the same way, some can exploit you, etc. It

would be better if the medical folks had access to more funds to

study this formally together. We are just not there yet. A good book

to read in preparation for seeing a DAN is the Dr. Bock 4 A's book.

Not to follow as a bible but just to get an idea of what they are

doing. In the end I would research a lot on your own and double check

stuff with mainstream physicians. The greatest gift you can give to

any doc, DAN or otherwise, is a thorough history. The greatest gift

you can give to your child is choosing good doctors who listen,

regardless of the label attached to the doc, and safe pursuits toward

physical healing.

>

> Here is just a question, in no way am I implying that these things

don't

> work or have not worked for some children. My son has PDD NOS and

Apraxia, he

> is four. Our Autism specialist was here today and we were talking

about the

> tests and different therapies that are all within the scope of DAN

DR's She told

> me that DAN DR's feel that they can cure Autism. I didn't know

that this was

> true. She just mentioned not to go into the appointment thinking

that

> everything they recommend is going to work. She said to be sure

that you trust

> everything that is recommended is safe. Not all things that Dr's

recommend

> can be safe. I think we have yeast issues, and I want to make

sure that all

> his dietary issues are in order. She did tell me that some of the

things that

> can be recommended actually can be dangerous to a child. I am not

looking

> for a debate or for anyone to get defensive when I say this, she

did say the

> things recommended could work for maybe one child and not another,

or a certain

> supplement could help one child but not another. I know that

these

> therapies and tests are very expensive. I won't get into the

specifics of the things

> she said could potentially be dangerous, but has anyone had any

negative

> experiences, or recommendations from a DAN Dr that they didn't

think was wise to

> put their child through, just because something is suggested

doesn't mean it

> is safe. Just wondering, any thoughts.

>

>

>

> **************Ideas to please picky eaters. Watch video on AOL

Living.

> (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-

campos-duffy/

> 2050827?NCID=aolcmp00300000002598)

>

>

>

[Guest guest]

I'm sure experiences vary widely, but I know that nothing that has

been recommended to us by our DAN thus far is dangerous:

--trial of GFCF diet

--avoid artificials, etc.

--cod liver oil

(approved use of Omega 3-6-9 as well, on my suggestion)

--carnitine

--CoQ10

--HLC Neonate, a probiotic

--P5P, which is B6

--Folinic Acid

--mB12 shots

--Nystatin

--Diflucan (after finishing with Nystatin)

None of the dosages are excessive. The only one that exceeds the

recommendations on the bottle is the Omega 3-6-9, which was decided

by me, not the doctor.

My niece's DAN, whom I've met and have tremendous respect for, has

put her on some of the more serious treatments: Valtrex, pencillin,

Actos, HBOT. Valtrex and Actos in particular require serious

consideration and monitoring with periodic bloodwork. They can have

serious side effects. For my niece, the Actos is a very important

component of her program, but one not taken lightly by my sister.

For anything like that, you must have real faith in the quality of

your doctor. I don't think you would jump into that kind of

treatment on the first or second visit. Trust builds over time, and

with success with more proven remedies.

What I find really interesting, and it's never really discussed here

or elsewhere, is the tremendous knowledge that parents using

biomedical treatment develop over time about the pluses and minuses

of each vitamin, supplement, and medication. There is an assumption

out there, even among the " believers " , that you better know the how

and why of each thing. How many parents of typical kids know the

details on the medications their children have taken for ear

infections, pink eye, and so forth? Many (not all) have total trust

in their pediatricians and assume that whatever they say or do must

be risk-free. That's not true of anything! I never asked for a copy

of any medical record or lab test for myself until recently. I

should have, but I didn't know I would need to know anything. I had

total trust that the doctors would tell me what I need to do if there

is a problem.

I think if you decide to see a DAN doctor, you will find that almost

all of the recommendations are straightforward and generally safe.

The more extreme measures will be based on labwork and will be

thoroughly explained to you. And thanks to the Internet, you will be

able to independently research the treatment and come up with your

own opinion on whether or not to go forward.

When people dissuade people from seeking alternatives because they

MIGHT suggest something unacceptable, it reminds of the bad old days

when the Church didn't want the general public to read the Bible

because they might misinterpret it. I think most of us can evaluate

a doctor's recommendations carefully, just like I think we can all

read the bible (if that's your thing).

In my opinion, the most important things to think about are whether

you need a DAN to tackle your issues, and, if yes, who is the best

doctor for your child.

Just my two cents...

in NJ

>

> Here is just a question, in no way am I implying that these things

don't

> work or have not worked for some children. My son has PDD NOS and

Apraxia, he

> is four. Our Autism specialist was here today and we were talking

about the

> tests and different therapies that are all within the scope of DAN

DR's She told

> me that DAN DR's feel that they can cure Autism. I didn't know

that this was

> true. She just mentioned not to go into the appointment thinking

that

> everything they recommend is going to work. She said to be sure

that you trust

> everything that is recommended is safe. Not all things that Dr's

recommend

> can be safe. I think we have yeast issues, and I want to make

sure that all

> his dietary issues are in order. She did tell me that some of the

things that

> can be recommended actually can be dangerous to a child. I am not

looking

> for a debate or for anyone to get defensive when I say this, she

did say the

> things recommended could work for maybe one child and not another,

or a certain

> supplement could help one child but not another. I know that

these

> therapies and tests are very expensive. I won't get into the

specifics of the things

> she said could potentially be dangerous, but has anyone had any

negative

> experiences, or recommendations from a DAN Dr that they didn't

think was wise to

> put their child through, just because something is suggested

doesn't mean it

> is safe. Just wondering, any thoughts.

>

>

>

> **************Ideas to please picky eaters. Watch video on AOL

Living.

> (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-

campos-duffy/

> 2050827?NCID=aolcmp00300000002598)

>

>

>

[Guest guest]

I'm very happy to read the Autism specialist even mentioned the

options .I still hold quite a bit of distain for the stream of idiots

that filed through my life in the beginning. Although, sounds to

me that she is very unsure about what she is talking about and a bit

misinformed, hopefully you will share your learning

curve with her so she can become more confident and accurate.

First off, this thing about DAN Dr.s - ABSOLUTELY YES - seek out a

good DAN practioner. I strongly

suggest choosing one that is actively researching, writing, speaking,

teaching because this group of top notch pros is in constant motion.

New discoveries, research is happinging in REAL TIME for a change.

This information is then filtered down through channels, and those

practicioners who are just dabbling are not going to have the benefit

of recent, vital information that you NEED right now while our kids

precious brains are under attack.

So with that, I will suggest that

you really get to know; www. autism.com - Autism Research Instit.

website - think of this site at the " base " .

Another site I think anyone new to biomedical should be very well

aquainted with; www.generationrescue.org - I suggest really

spending time reading in general but - you want a pick me up - wake

me up? Then read the testimonials and you fill find one after

another family story - all are a bit different - but you will find

yourself all over these parent stories. The best news - all those

are recovered kids.

Another thing - I wouldn't use the term " CURE " In fact,

if you find a DAN that say's he/she can " cure " your kid, consider

that a red flag. Our kids can RECOVER and that largely depends on

you.

In general, they (DAN!)are NOT this lot of outcasts. They are (and I

am speaking from the land of first hand knowledge) regular

allopathically trained M.D.'s with MORE knowledge and training

specializing in the biomedical complexities of the current childhood

epidemics. They generally see ONLY these kids all day every day.

The best ones will be attending several annual conferences.

And as for conferences. I waited on this because I felt I could get

this info from the other parents who often share notes. I finally

went to one at the urging of another Mom with an injured child. BEST

THING WE DID because my husband was able to learn in one weekend what

took me 1.5 years to learn via research books/internet and we were

updated on what is basically hot off the press' - new studies, new

research, new data - ALL peer reviewed and credible information. At

this time we also met many of the top Dr.s who when you meet are the

most approachable, even charitable human beings you will ever meet.

Seriously, you will have a new spin on the world of medicine when you

meet these Dr.'s. They won't be anything at all resembling the

negative crap you may have heard/read.

Caveat - I am speaking mostly of the best/top Docs. As with all

fields - you could go with good or you can choose exceptional. On

this problem - unless you are a real savvy Mom - exceptional is best.

Some Moms are so naturally proactive and have the intellect, they

are able to use their current Dr.s (most are so reluctant - purely

misinformation and politics). I've know a few, and there are some on

this list who really drive the recovery ship well.

Most of us, are pretty conditioned to listen to the good ol'Dr. and

take their advise as gospel. Once you start the journey of taking

your kid around to the chain of command, you will find they all have

a different spin on any give situation. Ex - I showed my Ped my sons

initial labs - basic labs but far and beyond his realm to even

order. He simply did not have the bank of knowledge as it applies to

my sons' cental issues- not to say he's a

crap Dr. - not at all - he just doesn't know. Ask yourself this, how

do you think Dr.s become apprised of new information? Are they not

busy all day long writing scrips for anti biotics, administering

vaccines, managing asthma, allergies, referrals to specialists. When

do they have time? Their is a stream of info - but who controls

that stream? This article can illuminate this point -

http://www.ageofautism.com/2008/02/the-aap-knows-v.html

So, in closing - if you feel confident about the material then go it

alone - we're not talking dangergous phamaceuticals here - we are

talking mostly about supplements. And with the huge network of

parents all working on the current childhood epidemics - endless

resources both ancedotal and scientific peer reviewed studies all are

shared. And, use learn to trust your instincts - very important.

If I were to suggest a good way to start:

1. Buy/read Bocks book - The New Childhood Epidemics -

2. I also think Kirby's - Evidence of Harm really puts into

prescective how we got here.

3. You could also connect with local Mom's who are listed as " rescue

angels " on the www.generationrescue.org site - their purpose is to

help you find local resources, talk about their journey,offer some

hope.

4. The Autism One conference is in Chicago in May - it would be

excellent if you could attend the conference.

5. Select a DAN! And don't pick one because he's close to your home -

it doesn't matter - go for a top doc.

HTH - just wanted to offer another perspective - someone helped me

once and you will do the same hopefully

>

> Here is just a question, in no way am I implying that these things

don't

> work or have not worked for some children. My son has PDD NOS and

Apraxia, he

> is four. Our Autism specialist was here today and we were talking

about the

> tests and different therapies that are all within the scope of DAN

DR's She told

> me that DAN DR's feel that they can cure Autism. I didn't know

that this was

> true. She just mentioned not to go into the appointment thinking

that

> everything they recommend is going to work. She said to be sure

that you trust

> everything that is recommended is safe. Not all things that Dr's

recommend

> can be safe. I think we have yeast issues, and I want to make

sure that all

> his dietary issues are in order. She did tell me that some of the

things that

> can be recommended actually can be dangerous to a child. I am not

looking

> for a debate or for anyone to get defensive when I say this, she

did say the

> things recommended could work for maybe one child and not another,

or a certain

> supplement could help one child but not another. I know that

these

> therapies and tests are very expensive. I won't get into the

specifics of the things

> she said could potentially be dangerous, but has anyone had any

negative

> experiences, or recommendations from a DAN Dr that they didn't

think was wise to

> put their child through, just because something is suggested

doesn't mean it

> is safe. Just wondering, any thoughts.

>

>

>

> **************Ideas to please picky eaters. Watch video on AOL

Living.

> (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-

campos-duffy/

> 2050827?NCID=aolcmp00300000002598)

>

>

>

[Guest guest]

Hi :

I am little fuzzy if she was referring to just supplements or something else.

From your last post, I am thinking supplements, but still not sure. Could you

verify if that is what the subject was about?

HTH,

Tina

>

> >

> > Here is just a question, in no way am I implying that these

things

> don't

> > work or have not worked for some children. My son has PDD NOS

and

> Apraxia, he

> > is four. Our Autism specialist was here today and we were talking

> about the

> > tests and different therapies that are all within the scope of

DAN

> DR's She told

> > me that DAN DR's feel that they can cure Autism. I didn't know

> that this was

> > true. She just mentioned not to go into the appointment

thinking

> that

> > everything they recommend is going to work. She said to be sure

> that you trust

> > everything that is recommended is safe. Not all things that

Dr's

> recommend

> > can be safe. I think we have yeast issues, and I want to make

> sure that all

> > his dietary issues are in order. She did tell me that some of

the

> things that

> > can be recommended actually can be dangerous to a child. I am

not

> looking

> > for a debate or for anyone to get defensive when I say this, she

> did say the

> > things recommended could work for maybe one child and not

another,

> or a certain

> > supplement could help one child but not another. I know that

> these

> > therapies and tests are very expensive. I won't get into the

> specifics of the things

> > she said could potentially be dangerous, but has anyone had any

> negative

> > experiences, or recommendations from a DAN Dr that they didn't

> think was wise to

> > put their child through, just because something is suggested

> doesn't mean it

> > is safe. Just wondering, any thoughts.

> >

> >

> >

> > **************Ideas to please picky eaters. Watch video on AOL

> Living.

> > (http://living.aol.com/video/how-to-please-your-picky-

eater/rachel-

> campos-duffy/

> > 2050827?NCID=aolcmp00300000002598)

> >

> >

> >

[Guest guest]

Just in general, some of the ways of removing metals, etc, supplements and

their combinations. I think she was indicating to just be very careful, there

was some story about a child and chelation and how the child got very very

sick. I think it was due to an error with the Dr, not the chelation itself.

**************Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)

[Guest guest]

This is not something I would even consider doing, my Father is a Physician

and he doesn't feel in his opinion it safe either. I was afraid to mention

what you just mentioned for fear of being Attacked by the people that whole

heartedly believe in this. Thanks for saying it for me.

>

> It wasn't just sick. There is a small risk of something much

> worse.

>

> Here are two articles and a blog on chelation risks:

>

> Experts: Chelation Therapy Not Worth the Risk

>

> Aug. 26, 2005 - A 5-year-old boy with autism died last Tuesday after

> getting a controversial treatment.

>

> According to news reports, the boy, Abubakar Nadama, went into

> cardiac arrest while undergoing chelation therapy -- his third such

> treatment -- at Advanced Integrative Medicine Center in Portersville,

> Pa. It is not yet known whether the treatment was the direct cause of

> the child's death.

>

> Chelation (pronounced key-LAY-shun) is used to remove heavy metals

> from the blood. It's approved for acute lead poisoning. The risk is

> that, in addition to toxic metals, it removes vital minerals from the

> body.

>

> No form of chelation therapy is approved by the FDA for treating

> autism. The treatment given to the boy was intravenous EDTA --

> ethylene diamine tetra-acetic acid.

>

> That angers autism expert Rubin, MD, a pediatrician affiliated

> with Emory and Morehouse universities and president of the Institute

> for the Study of Disadvantage and Disability.

>

> " I say this emphatically: Chelation is a very risky procedure with no

> proven benefits for children with autism or related conditions, "

> Rubin tells WebMD.

>

>

> Unproven Cause, Unproven Treatment

>

> Despite strong evidence to the contrary, many parents believe their

> children's autism is caused by mercury from thimerosal, a vaccine

> preservative. A recent Institute of Medicine (IOM) report explicitly

> rejects this theory. That report also finds no evidence that

> chelation helps autism.

>

> Nevertheless, many parents treat their children's autism with

> chelation therapies. Most of them consider intravenous EDTA an

> extreme treatment, says Sallie Bernard, executive director of Safe

> Minds, a group that strongly disagrees with the IOM's conclusions.

>

> " The boy who died was using a form of chelation therapy that is not

> generally recommended or widely practiced within the autism community

> trying chelation, " Bernard tells WebMD. " It is an unusual

> circumstance. EDTA is not what most of these parents are doing. It is

> not what is considered the right form of chelation. "

>

> Bernard -- under the supervision of a medical doctor -- has treated

> her own son's autism with oral chelation agents.

>

> Parents' Options

>

> That isn't what pediatrician Hyman, MD, would recommend. Hyman,

> an autism researcher at the University of Rochester, N.Y., has

> studied complementary and alternative treatments for autism.

>

> " When you have no cause and no cure, you have a lot of frustration, "

> Hyman tells WebMD. " As a doctor you can prescribe chelation for

> autism, but the efficacy just hasn't been demonstrated. "

>

> So why do so many parents say it works? Hyman says that most parents

> who try chelation don't give up on other, more effective treatments

> for their children. But when the kids improve, they think it is

> chelation that did the trick.

>

> " Many advocates of unproven treatments, such as parents of young

> children with autism, have such hope and desire that an unproven

> treatment is going to work that they do discern an improvement, "

> Hyman says.

>

> But Rubin insists that uncertain benefits are no reason to subject

> children to known risks. Instead of trying risky treatments, he

> advises parents that there are many things known to work.

>

> " I say to parents who want to try chelation, 'If I was in your

> position, I would feel as eager as you to do anything for my child,' "

> he says. " But what works is active, intensive, occupational therapy.

> What works is speech therapy, horseback-riding therapy, swimming.

> Parents, you do more than you realize by being loving and caring. We

> don't know where your child is going to go developmentally, but we

> will make sure they get to the best they can go. "

>

> A Call for Research

>

> Bernard says the Pennsylvania boy's death underscores the need for

> more research on chelation treatment.

>

> " If we had research so that we knew, number one, does chelation work

> or not work, and number two, what is the best way to do it, then any

> parent could make a better decision based on evidence-based

> medicine, " she says. " Now every parent is left to his or her own

> resources. Obviously some parents may not know the right way to do

> this. If we had some science, everybody would be better off. "

>

>

> ----------------------------------------------------------------------

>

> SOURCES: The Pittsburgh Tribune-Review, Aug. 25 and Aug. 26, 2005.

> Rubin, MD, Emory and Morehouse universities, Atlanta;

> president, Institute for the Study of Disadvantage and Disability.

> Hyman, MD, associate professor of pediatrics, Strong Children's

> Research Center, University of Rochester, N.Y. Sallie Bernard,

> executive director, Safe Minds.

>

> Reviewed by

> WebMD Health News 2005. © 2005 WebMD Inc.

> http://www.medscape.com/viewarticle/511713

>

>

> ----------------------------------------------------------------------

> FDA links child deaths to chelation therapy

> Drug used to treat lead, mercury poisoning; often used for autism

> The Associated Press

> updated 2:24 p.m. ET, Thurs., March. 2, 2006

> ATLANTA - A drug that is sometimes used to treat lead poisoning — and

> is also believed by some parents to be effective against autism —

> caused the deaths of two children last year, the government said

> Thursday.

>

> One youngster was autistic; the other had lead poisoning.

>

> The deaths mark the first documented link between a chelation drug

> and cardiac arrest in children, according to the Centers for Disease

> Control and Prevention. Both children were treated with a product

> called Endrate.

>

> CDC officials are also looking into the 2003 death of a 53-year-old

> woman in Oregon who was given chelation therapy by a practitioner of

> natural medicine.

>

> Brown, chief of the CDC's Lead Poisoning Prevention Branch,

> said hospital pharmacies should consider whether stocking Endrate is

> necessary, given its risks and the availability of other treatments.

>

> The maker of Endrate, Hospira Inc., had no immediate comment.

>

> Chelating agents are chemical compounds, injected or given orally,

> that latch on to metals in the body and carry them out through urine

> or feces. Chelation is commonly used for lead poisoning.

>

> Some doctors have used chelation to treat autism, believing mercury

> or other heavy metals cause the condition's symptoms. However,

> medical evidence does not support that belief, and the drug is not

> approved for that use, CDC officials said.

>

> Endrate is approved for treating certain heart rhythm disturbances

> and high concentrations of calcium triggered by a bone cancer.

>

> Since at least 1978, federal health officials have warned against

> giving it to children with lead poisoning. Endrate's calcium-removing

> abilities can dangerously disrupt the body's chemistry, Brown said.

>

> In August, a 5-year-old boy with autism died in Portersville, Pa.,

> while receiving an infusion of Endrate in a physician's office. A

> coroner later ruled that the treatment killed the boy.

>

> In February 2005, a 2-year-old girl with lead poisoning was treated

> with three chelating agents — one of them Endrate — and died at a

> hospital hours later from what an autopsy concluded was cardiac

> arrest due to depleted levels of calcium.

>

> © 2006 The Associated Press. All rights reserved. This material may

> not be published, broadcast, rewritten or redistributed.

> URL: http://www.msnbc.msn.com/id/11640868/

>

> And here's a blog if you want to read more

> http://leftbrainrightbrain.co.uk/?cat=46

>

> =====

>

[Guest guest]

Would you recommend the DAN conference for a parent whose children do

not have autism? I can't decide -- on the one hand, it's all

interesting stuff, but on the other hand, it really doesn't all apply

to apraxia or APD. And would you pick the expert or the topic? For

example, I'd really love to hear Bock speak, but I'm not sure his

topics are my first choice. And did you just go to the parent day,

or the others? Some of those topics are way beyond me!

Any advice appreciated.

in NJ

> >

> > Here is just a question, in no way am I implying that these

things

> don't

> > work or have not worked for some children. My son has PDD NOS

and

> Apraxia, he

> > is four. Our Autism specialist was here today and we were talking

> about the

> > tests and different therapies that are all within the scope of

DAN

> DR's She told

> > me that DAN DR's feel that they can cure Autism. I didn't know

> that this was

> > true. She just mentioned not to go into the appointment

thinking

> that

> > everything they recommend is going to work. She said to be sure

> that you trust

> > everything that is recommended is safe. Not all things that

Dr's

> recommend

> > can be safe. I think we have yeast issues, and I want to make

> sure that all

> > his dietary issues are in order. She did tell me that some of

the

> things that

> > can be recommended actually can be dangerous to a child. I am

not

> looking

> > for a debate or for anyone to get defensive when I say this, she

> did say the

> > things recommended could work for maybe one child and not

another,

> or a certain

> > supplement could help one child but not another. I know that

> these

> > therapies and tests are very expensive. I won't get into the

> specifics of the things

> > she said could potentially be dangerous, but has anyone had any

> negative

> > experiences, or recommendations from a DAN Dr that they didn't

> think was wise to

> > put their child through, just because something is suggested

> doesn't mean it

> > is safe. Just wondering, any thoughts.

> >

> >

> >

> > **************Ideas to please picky eaters. Watch video on AOL

> Living.

> > (http://living.aol.com/video/how-to-please-your-picky-

eater/rachel-

> campos-duffy/

> > 2050827?NCID=aolcmp00300000002598)

> >

> >

> >

[Guest guest]

I went to the last DAN conference in Southern California and I

choose the parents day. If I were to go again, I would choose the

science day instead. They have some good topics of interest and

talk briefly about the DAN approach, leaky gut, etc at the parents

day.

They don't really get into specifics about speech delays such as

Apraxia so I don't know how helpful it would be. Have you attended

an Apraxia conference yet? I am thinking about going to the one in

San Diego in March. This will be my first one.

Hetal

[Guest guest]

Great Question.

OH YES! My son doesn't qualify for an Autism dx - perhaps if I

pushed I could get a high functioning dx. I didn't need a label

because we put him in a Montessori School - no label required. But,

his labs - oh, yes, he is most certainly in that realm. And I have

to disagree - you will be surprised at how applicable apraxia and APD

is to this conference. Bock is great, for sure see him - his book

should really have included Apraxia in the title but not all Dr.s

acknowledge the Apraxia label. It will be, now that kids aren't

getting blasted with mercury - but are still exposed to an ever

increasing toxic world - and need I get on the vaccine wagon - still

very much loaded with toxins... Have you heard Dr. Ayoub? If he is

attending - check him out FOR SURE -it's all about aluminium. My

husband really got a lot out of his

presentation. What you will learn is that Apraxia is very much part

of the Autism epidemic - which certainly is NOT a genetic epidemic.

If adhd is on the spectrum then certainly apraxia is there too....

it's all part of the same problem. You will LOVE the conference -

and you will feel right at home with your apraxic kids. You may even

feel a bit guilty that you're not faced with bigger challenges.

Pick and choose topics - we sat in on some really mind benders - ie.

Dr.Deth - completely over my head, but I know my kid does suffer with

oxidative stress so I was intersted in learning- Deth went into

painful detail - I got about 20% but next time I hear/read it - i'll

get more.

>

> Would you recommend the DAN conference for a parent whose children

do

> not have autism? I can't decide -- on the one hand, it's all

> interesting stuff, but on the other hand, it really doesn't all

apply

> to apraxia or APD. And would you pick the expert or the topic?

For

> example, I'd really love to hear Bock speak, but I'm not sure his

> topics are my first choice. And did you just go to the parent day,

> or the others? Some of those topics are way beyond me!

>

> Any advice appreciated.

>

> in NJ

>

>

[Guest guest]

It wasn't just sick. There is a small risk of something much

worse.

Here are two articles and a blog on chelation risks:

Experts: Chelation Therapy Not Worth the Risk

Aug. 26, 2005 - A 5-year-old boy with autism died last Tuesday after

getting a controversial treatment.

According to news reports, the boy, Abubakar Nadama, went into

cardiac arrest while undergoing chelation therapy -- his third such

treatment -- at Advanced Integrative Medicine Center in Portersville,

Pa. It is not yet known whether the treatment was the direct cause of

the child's death.

Chelation (pronounced key-LAY-shun) is used to remove heavy metals

from the blood. It's approved for acute lead poisoning. The risk is

that, in addition to toxic metals, it removes vital minerals from the

body.

No form of chelation therapy is approved by the FDA for treating

autism. The treatment given to the boy was intravenous EDTA --

ethylene diamine tetra-acetic acid.

That angers autism expert Rubin, MD, a pediatrician affiliated

with Emory and Morehouse universities and president of the Institute

for the Study of Disadvantage and Disability.

" I say this emphatically: Chelation is a very risky procedure with no

proven benefits for children with autism or related conditions, "

Rubin tells WebMD.

Unproven Cause, Unproven Treatment

Despite strong evidence to the contrary, many parents believe their

children's autism is caused by mercury from thimerosal, a vaccine

preservative. A recent Institute of Medicine (IOM) report explicitly

rejects this theory. That report also finds no evidence that

chelation helps autism.

Nevertheless, many parents treat their children's autism with

chelation therapies. Most of them consider intravenous EDTA an

extreme treatment, says Sallie Bernard, executive director of Safe

Minds, a group that strongly disagrees with the IOM's conclusions.

" The boy who died was using a form of chelation therapy that is not

generally recommended or widely practiced within the autism community

trying chelation, " Bernard tells WebMD. " It is an unusual

circumstance. EDTA is not what most of these parents are doing. It is

not what is considered the right form of chelation. "

Bernard -- under the supervision of a medical doctor -- has treated

her own son's autism with oral chelation agents.

Parents' Options

That isn't what pediatrician Hyman, MD, would recommend. Hyman,

an autism researcher at the University of Rochester, N.Y., has

studied complementary and alternative treatments for autism.

" When you have no cause and no cure, you have a lot of frustration, "

Hyman tells WebMD. " As a doctor you can prescribe chelation for

autism, but the efficacy just hasn't been demonstrated. "

So why do so many parents say it works? Hyman says that most parents

who try chelation don't give up on other, more effective treatments

for their children. But when the kids improve, they think it is

chelation that did the trick.

" Many advocates of unproven treatments, such as parents of young

children with autism, have such hope and desire that an unproven

treatment is going to work that they do discern an improvement, "

Hyman says.

But Rubin insists that uncertain benefits are no reason to subject

children to known risks. Instead of trying risky treatments, he

advises parents that there are many things known to work.

" I say to parents who want to try chelation, 'If I was in your

position, I would feel as eager as you to do anything for my child,' "

he says. " But what works is active, intensive, occupational therapy.

What works is speech therapy, horseback-riding therapy, swimming.

Parents, you do more than you realize by being loving and caring. We

don't know where your child is going to go developmentally, but we

will make sure they get to the best they can go. "

A Call for Research

Bernard says the Pennsylvania boy's death underscores the need for

more research on chelation treatment.

" If we had research so that we knew, number one, does chelation work

or not work, and number two, what is the best way to do it, then any

parent could make a better decision based on evidence-based

medicine, " she says. " Now every parent is left to his or her own

resources. Obviously some parents may not know the right way to do

this. If we had some science, everybody would be better off. "

----------------------------------------------------------------------

SOURCES: The Pittsburgh Tribune-Review, Aug. 25 and Aug. 26, 2005.

Rubin, MD, Emory and Morehouse universities, Atlanta;

president, Institute for the Study of Disadvantage and Disability.

Hyman, MD, associate professor of pediatrics, Strong Children's

Research Center, University of Rochester, N.Y. Sallie Bernard,

executive director, Safe Minds.

Reviewed by

WebMD Health News 2005. © 2005 WebMD Inc.

http://www.medscape.com/viewarticle/511713

----------------------------------------------------------------------

FDA links child deaths to chelation therapy

Drug used to treat lead, mercury poisoning; often used for autism

The Associated Press

updated 2:24 p.m. ET, Thurs., March. 2, 2006

ATLANTA - A drug that is sometimes used to treat lead poisoning — and

is also believed by some parents to be effective against autism —

caused the deaths of two children last year, the government said

Thursday.

One youngster was autistic; the other had lead poisoning.

The deaths mark the first documented link between a chelation drug

and cardiac arrest in children, according to the Centers for Disease

Control and Prevention. Both children were treated with a product

called Endrate.

CDC officials are also looking into the 2003 death of a 53-year-old

woman in Oregon who was given chelation therapy by a practitioner of

natural medicine.

Brown, chief of the CDC's Lead Poisoning Prevention Branch,

said hospital pharmacies should consider whether stocking Endrate is

necessary, given its risks and the availability of other treatments.

The maker of Endrate, Hospira Inc., had no immediate comment.

Chelating agents are chemical compounds, injected or given orally,

that latch on to metals in the body and carry them out through urine

or feces. Chelation is commonly used for lead poisoning.

Some doctors have used chelation to treat autism, believing mercury

or other heavy metals cause the condition's symptoms. However,

medical evidence does not support that belief, and the drug is not

approved for that use, CDC officials said.

Endrate is approved for treating certain heart rhythm disturbances

and high concentrations of calcium triggered by a bone cancer.

Since at least 1978, federal health officials have warned against

giving it to children with lead poisoning. Endrate's calcium-removing

abilities can dangerously disrupt the body's chemistry, Brown said.

In August, a 5-year-old boy with autism died in Portersville, Pa.,

while receiving an infusion of Endrate in a physician's office. A

coroner later ruled that the treatment killed the boy.

In February 2005, a 2-year-old girl with lead poisoning was treated

with three chelating agents — one of them Endrate — and died at a

hospital hours later from what an autopsy concluded was cardiac

arrest due to depleted levels of calcium.

© 2006 The Associated Press. All rights reserved. This material may

not be published, broadcast, rewritten or redistributed.

URL: http://www.msnbc.msn.com/id/11640868/

And here's a blog if you want to read more

http://leftbrainrightbrain.co.uk/?cat=46

=====

[Guest guest]

What are you hoping to get from the DAN for your son? It is not all

about chelation. A good DAN will listen to a thorough history,

address potential allergins, underlying autoimmune pathology, look

for vitamin and mineral deficiencies, pursue metals testing and work

with you as the parent to address your child's health. Chelation need

not be a part of that and that decision is yours. Personally,

chelation is not something I want to do. I can never say never

because our personal journey has taken us places I never thought we'd

be in but I am not at all running toward chelation or even MB12. I am

still trying to figure out allergins and food on my own because I

really want to trust the doc I work with in trying to rule in or out

metal. I found a good DAN to do the testing BUT I am not so sure he

knows the supplements well enough nor does he understand the depth of

our fluoride issue as evidenced by our difficulty giving calmag. Not

sure who will so we are currently in a holding pattern of sorts.

Honestly, you really should not go to any doc, DAN or otherwise until

you know more about them. Do you know if the DAN you scheduled an

appt with supervises diet well, knows supplements? As those things

sound like what you are looking for. If not you can consider

alternatives like a special needs nutritionist like Dorfman. I

have no relationoship with her nor any first hand knowledge, just an

example.

> >

> > It wasn't just sick. There is a small risk of something much

> > worse.

> >

> > Here are two articles and a blog on chelation risks:

> >

> > Experts: Chelation Therapy Not Worth the Risk

> >

> > Aug. 26, 2005 - A 5-year-old boy with autism died last Tuesday

after

> > getting a controversial treatment.

> >

> > According to news reports, the boy, Abubakar Nadama, went into

> > cardiac arrest while undergoing chelation therapy -- his third

such

> > treatment -- at Advanced Integrative Medicine Center in

Portersville,

> > Pa. It is not yet known whether the treatment was the direct

cause of

> > the child's death.

> >

> > Chelation (pronounced key-LAY-shun) is used to remove heavy metals

> > from the blood. It's approved for acute lead poisoning. The risk

is

> > that, in addition to toxic metals, it removes vital minerals from

the

> > body.

> >

> > No form of chelation therapy is approved by the FDA for treating

> > autism. The treatment given to the boy was intravenous EDTA --

> > ethylene diamine tetra-acetic acid.

> >

> > That angers autism expert Rubin, MD, a pediatrician

affiliated

> > with Emory and Morehouse universities and president of the

Institute

> > for the Study of Disadvantage and Disability.

> >

> > " I say this emphatically: Chelation is a very risky procedure

with no

> > proven benefits for children with autism or related conditions, "

> > Rubin tells WebMD.

> >

> >

> > Unproven Cause, Unproven Treatment

> >

> > Despite strong evidence to the contrary, many parents believe

their

> > children's autism is caused by mercury from thimerosal, a vaccine

> > preservative. A recent Institute of Medicine (IOM) report

explicitly

> > rejects this theory. That report also finds no evidence that

> > chelation helps autism.

> >

> > Nevertheless, many parents treat their children's autism with

> > chelation therapies. Most of them consider intravenous EDTA an

> > extreme treatment, says Sallie Bernard, executive director of Safe

> > Minds, a group that strongly disagrees with the IOM's conclusions.

> >

> > " The boy who died was using a form of chelation therapy that is

not

> > generally recommended or widely practiced within the autism

community

> > trying chelation, " Bernard tells WebMD. " It is an unusual

> > circumstance. EDTA is not what most of these parents are doing.

It is

> > not what is considered the right form of chelation. "

> >

> > Bernard -- under the supervision of a medical doctor -- has

treated

> > her own son's autism with oral chelation agents.

> >

> > Parents' Options

> >

> > That isn't what pediatrician Hyman, MD, would recommend.

Hyman,

> > an autism researcher at the University of Rochester, N.Y., has

> > studied complementary and alternative treatments for autism.

> >

> > " When you have no cause and no cure, you have a lot of

frustration, "

> > Hyman tells WebMD. " As a doctor you can prescribe chelation for

> > autism, but the efficacy just hasn't been demonstrated. "

> >

> > So why do so many parents say it works? Hyman says that most

parents

> > who try chelation don't give up on other, more effective

treatments

> > for their children. But when the kids improve, they think it is

> > chelation that did the trick.

> >

> > " Many advocates of unproven treatments, such as parents of young

> > children with autism, have such hope and desire that an unproven

> > treatment is going to work that they do discern an improvement, "

> > Hyman says.

> >

> > But Rubin insists that uncertain benefits are no reason to subject

> > children to known risks. Instead of trying risky treatments, he

> > advises parents that there are many things known to work.

> >

> > " I say to parents who want to try chelation, 'If I was in your

> > position, I would feel as eager as you to do anything for my

child,' "

> > he says. " But what works is active, intensive, occupational

therapy.

> > What works is speech therapy, horseback-riding therapy, swimming.

> > Parents, you do more than you realize by being loving and caring.

We

> > don't know where your child is going to go developmentally, but we

> > will make sure they get to the best they can go. "

> >

> > A Call for Research

> >

> > Bernard says the Pennsylvania boy's death underscores the need for

> > more research on chelation treatment.

> >

> > " If we had research so that we knew, number one, does chelation

work

> > or not work, and number two, what is the best way to do it, then

any

> > parent could make a better decision based on evidence-based

> > medicine, " she says. " Now every parent is left to his or her own

> > resources. Obviously some parents may not know the right way to do

> > this. If we had some science, everybody would be better off. "

> >

> >

> > ------------------------------------------------------------------

----

> >

> > SOURCES: The Pittsburgh Tribune-Review, Aug. 25 and Aug. 26, 2005.

> > Rubin, MD, Emory and Morehouse universities, Atlanta;

> > president, Institute for the Study of Disadvantage and Disability.

> > Hyman, MD, associate professor of pediatrics, Strong

Children's

> > Research Center, University of Rochester, N.Y. Sallie Bernard,

> > executive director, Safe Minds.

> >

> > Reviewed by

> > WebMD Health News 2005. © 2005 WebMD Inc.

> > http://www.medscape.com/viewarticle/511713

> >

> >

> > ------------------------------------------------------------------

----

> > FDA links child deaths to chelation therapy

> > Drug used to treat lead, mercury poisoning; often used for autism

> > The Associated Press

> > updated 2:24 p.m. ET, Thurs., March. 2, 2006

> > ATLANTA - A drug that is sometimes used to treat lead poisoning —

and

> > is also believed by some parents to be effective against autism —

> > caused the deaths of two children last year, the government said

> > Thursday.

> >

> > One youngster was autistic; the other had lead poisoning.

> >

> > The deaths mark the first documented link between a chelation drug

> > and cardiac arrest in children, according to the Centers for

Disease

> > Control and Prevention. Both children were treated with a product

> > called Endrate.

> >

> > CDC officials are also looking into the 2003 death of a 53-year-

old

> > woman in Oregon who was given chelation therapy by a practitioner

of

> > natural medicine.

> >

> > Brown, chief of the CDC's Lead Poisoning Prevention

Branch,

> > said hospital pharmacies should consider whether stocking Endrate

is

> > necessary, given its risks and the availability of other

treatments.

> >

> > The maker of Endrate, Hospira Inc., had no immediate comment.

> >

> > Chelating agents are chemical compounds, injected or given orally,

> > that latch on to metals in the body and carry them out through

urine

> > or feces. Chelation is commonly used for lead poisoning.

> >

> > Some doctors have used chelation to treat autism, believing

mercury

> > or other heavy metals cause the condition's symptoms. However,

> > medical evidence does not support that belief, and the drug is not

> > approved for that use, CDC officials said.

> >

> > Endrate is approved for treating certain heart rhythm disturbances

> > and high concentrations of calcium triggered by a bone cancer.

> >

> > Since at least 1978, federal health officials have warned against

> > giving it to children with lead poisoning. Endrate's calcium-

removing

> > abilities can dangerously disrupt the body's chemistry, Brown

said.

> >

> > In August, a 5-year-old boy with autism died in Portersville, Pa.,

> > while receiving an infusion of Endrate in a physician's office. A

> > coroner later ruled that the treatment killed the boy.

> >

> > In February 2005, a 2-year-old girl with lead poisoning was

treated

> > with three chelating agents — one of them Endrate — and died at a

> > hospital hours later from what an autopsy concluded was cardiac

> > arrest due to depleted levels of calcium.

> >

> > © 2006 The Associated Press. All rights reserved. This material

may

> > not be published, broadcast, rewritten or redistributed.

> > URL: http://www.msnbc.msn.com/id/11640868/

> >

> > And here's a blog if you want to read more

> > http://leftbrainrightbrain.co.uk/?cat=46

> >

> > =====

> >

[Guest guest]

Thanks for the great advice, ! I'm going to check out the

schedule again, and if I have any more questions, I'll post.

>

> Great Question.

>

> OH YES! My son doesn't qualify for an Autism dx - perhaps if I

> pushed I could get a high functioning dx. I didn't need a label

> because we put him in a Montessori School - no label required.

But,

> his labs - oh, yes, he is most certainly in that realm. And I

have

> to disagree - you will be surprised at how applicable apraxia and

APD

> is to this conference. Bock is great, for sure see him - his book

> should really have included Apraxia in the title but not all Dr.s

> acknowledge the Apraxia label. It will be, now that kids aren't

> getting blasted with mercury - but are still exposed to an ever

> increasing toxic world - and need I get on the vaccine wagon -

still

> very much loaded with toxins... Have you heard Dr. Ayoub? If he is

> attending - check him out FOR SURE -it's all about aluminium. My

> husband really got a lot out of his

> presentation. What you will learn is that Apraxia is very much

part

> of the Autism epidemic - which certainly is NOT a genetic epidemic.

> If adhd is on the spectrum then certainly apraxia is there too....

> it's all part of the same problem. You will LOVE the conference -

> and you will feel right at home with your apraxic kids. You may

even

> feel a bit guilty that you're not faced with bigger challenges.

>

> Pick and choose topics - we sat in on some really mind benders -

ie.

> Dr.Deth - completely over my head, but I know my kid does suffer

with

> oxidative stress so I was intersted in learning- Deth went into

> painful detail - I got about 20% but next time I hear/read it -

i'll

> get more.

>

>

>

>

>

>