AAP and Defeat Autism Now

[Guest guest]

Does anyone that went to the DAN Conference want to give a report on

the AAP inititative? Everyone seems to think the AAP and DAN

partenering will change AAP.

I am worried that the real net effect is nothing will change with the

AAP but the AAP's involvement will impact DAN in a negative way.

[Guest guest]

I was at the DAN conference. I met a few doctors that were trying to

figure out a way to treat patients under the DAN protocol in their

mainstream office and have insurance cover it ... I'm just a mom, but I

don't understand why insurance won't cover tests that show our children

have immunological problems not a brain disorder. Perhaps the

representatives will help us in that department ... getting mainstream

peds to recognize this as a physiological problem that causes the

behavioral problems.

indicated they were there ... which we all broke into applause to

show appreciation for their attendence - I'm not sure how they could

ever say there's no science to prove the protocol is saving children

and their families.

How anyone could listen to so many parents telling the same story over

and over and over that their children started speaking after dietary

changes is just crazy to me to not see this means something HUGE for

many children.

As far as the APP having a negative effect on Defeat Autism Now,

there's no way in hell that could happen! Nobody can stop us from

saving these kids ...

>

> Does anyone that went to the DAN Conference want to give a report on

> the AAP inititative? Everyone seems to think the AAP and DAN

> partenering will change AAP.

>

> I am worried that the real net effect is nothing will change with the

> AAP but the AAP's involvement will impact DAN in a negative way.

>

[Guest guest]

I don't see the AAP's involvement with ARI as anything more than a

stunt. The AAP has to start doing SOMETHING to show it cares for

autistic children, at the least go through some motions. They as so

screwed.

Lenny

>

> Does anyone that went to the DAN Conference want to give a report on

> the AAP inititative? Everyone seems to think the AAP and DAN

> partenering will change AAP.

>

> I am worried that the real net effect is nothing will change with the

> AAP but the AAP's involvement will impact DAN in a negative way.

>

[Guest guest]

FWIW, My wife carries BCBS on our autistic son and they will not

cover any bloodwor from GPL witht the plan that we can afford. She

does have an option of carrying a BCBS plan that cost 3X the HMO plan

that would cover BCBS lab work with GPS, however, we can not afford

it.

BR,

Steve

>

> > I was at the DAN conference. I met a few doctors that were trying

to

> > figure out a way to treat patients under the DAN protocol in their

> > mainstream office and have insurance cover it ... I'm just a

mom,

> > but I

> > don't understand why insurance won't cover tests that show our

> > children

> > have immunological problems not a brain disorder.

> >

>

> Actually, insurance will cover many of the tests. The problem is

> that the *labs* a regular doctor uses don't offer the same kind of

> extensive testing as the " autism labs " and in a lot of cases, they

> simply don't offer the test at all. For instance, I took a copy

of

> our allergy panel to my peds office (who doesn't believe in

biomed)

> and he was floored by the amount of foods covered. He flat out

told

> me that he could never have ordered a lab with that many foods as

the

> lab they use only test *6* foods. What we really need to do is to

> get the " autism labs " to become insurance friendly. The closest

one

> we have is GPL and they only accept BCBS. For those that have

BCBS

> it's almost always covered at 100% or close to. If there is

demand,

> " normal " labs will more than likely add these tests but there

isn't

> enough demand from normal peds and to be quite honest, most normal

> peds have *no clue* these tests exist in other labs. Labcorp has

a

> porphyrins test but most peds don't know about it because no one

ever

> goes to them to ask for one since most of our peds think we're

nuts

> anyway. I know with relative certainty if I went to my ped and

asked

> for the porphyrins test I would more than likely get a big spiel

on

> " why do you think you need one " and " I don't see the relationship

so

> I don't think we need to order one " and I'm sure I'd

hear, " Really?

> I didn't know they had that test. "

>

> Cheryl

>

>

> >

>

[Guest guest]

I don't see how they will do much. So many are on crunch time, running

so many kids in per hour to keep up the math, add some vaccines -

antiboitics in per visit. Seeing Autistic kids and actually treating

them takes a lot of time and education.

I think the whole deal is just lip service, they are showing up so -

everything is alright now.

In EOHarm , " stocker1216 " <stocker1216@...> wrote:

>

> Does anyone that went to the DAN Conference want to give a report on

> the AAP inititative? Everyone seems to think the AAP and DAN

> partenering will change AAP.

>

> I am worried that the real net effect is nothing will change with the

> AAP but the AAP's involvement will impact DAN in a negative way.

>

[Guest guest]

The lip service mentioned on this thread is the same as the DAN doctors saying

they

cannot bill insurance. MD's can bill for an extended office visit and do it all

the time.

2 DAN conferences in a row and insurance questions could not get through during

Q and A. Why is it that some DANs (<5%) and other MD's and DO's have no

problems

with accepting insurance and medicaid waivers? It's pure greed folks and I know

that is

hard to accept when you think they have helped your kids. The State insurance

parity

bills, many are now law, are a mechanism to let the doctors treat the

immunology, GI and

other issues without discrimination because of an autism diagnosis. Has anyone

representing ARI/DAN been to any of these State Houses as these bills are being

passed?

Have any offered any expert testimony in the past couple years as these bills

are being

work on? As far as the AAP goes, we are going to have to move them to action

eventually

anyway. Maybe it is a PR stunt, but, while we have them " on the ropes " it is

also a

opportunity to persuade them by presenting the science. The science is weak and

not

proven at DAN in the areas we know of that are helping our kids. When you print

in the

2008 DAN conference book that chelation improves 74% of kids and do not back it

up with

studies don't expect mainline medicine to come and embrace you. I don't mind

seeing

presentations and treatments on emerging treatments, but, not much has changed

and

the studies haven't been done on what has been promoted for years at these

conferences.

It seems to be more about the cash than the kids, and it needs to change. Why

are they

not publishing data trends. Wake up people, and please demand some

accountability.

I am really upset about the disclosure policy and presentations. Dan Rossignol

received a

research grant from International Hyperbarics Assn. It is my understanding that

his

presentation content had to be altered, yet many of the other speakers received

funding

from the same International Hyperbarics Assn., but, didn't have to alter their

presentations. The loophole was using the word " Significant Financial Interest "

instead of

" Financial Interest " How about some transparency on who receives what at DAN.

Ken Bock, MD markets his own line of supplements, which he pushes to his

patients, yet

Levinson, MD had to alter his presentation because he has his own line of

supplements.

When the AAP sees some of the presentations and so called science, with no

pathology to

back up a lot of it, don't expect them to embrace DAN. I am sick of seeing

parents with

limited resources bankroll this gravy train for the DAN doctors.

$750 consults,

$500 hr,

use our supplements(the profit margins are great for us),

marking up labs,

I want to see your kid every 4-6 weeks,

we don't take insurance,

You need to take out a home equity loan so I can cure your child,

we can't afford to hire a claims person because we barely break even caring for

you child.

Were to busy curing kids to publish data trends to prove this works.

Ask your DAN doctor who does not submit the insurance claims how it is ethical

to make a

parent responsible for the management of medical documents.

This is baloney, your being taken advantage of, because many of these Dr's know

you love

your children and they prey on that, and most of you know it. When the AAP

looks at all of

this they are not going to see the DAN Dr that take insurance or charge a

reasonable fee,

or help families in crisis. Don't go blaming a few parents who expose this,

while they are

still promoting and treating with biomedical interventions through other doctors

who

accept insurance and/or publish. It's time for the CDC and DAN to come clean.

Want to save thousands of dollars per year medically treating your child?

Please join the autism insurance group.

autism_insurance_information/

> >

> > Does anyone that went to the DAN Conference want to give a report on

> > the AAP inititative? Everyone seems to think the AAP and DAN

> > partenering will change AAP.

> >

> > I am worried that the real net effect is nothing will change with the

> > AAP but the AAP's involvement will impact DAN in a negative way.

> >

>

[Guest guest]

Passionate post. Some of my thoughts below:

> >

> >

> > I don't see the AAP's involvement with ARI as anything more than a

> > stunt. The AAP has to start doing SOMETHING to show it cares for

> > autistic children, at the least go through some motions. They as so

> > screwed.

> >

> >

> > Lenny

> >

[Guest guest]

OK, I'll try to respond to your comments and bring some back into context best I

can.

> > >

> > >

> > > I don't see the AAP's involvement with ARI as anything more than a

> > > stunt. The AAP has to start doing SOMETHING to show it cares for

> > > autistic children, at the least go through some motions. They as so

> > > screwed.

> > >

> > >

> > > Lenny

> > >

>

[Guest guest]

It goes beyond the doctors not ordering these tests or wondering how

to get the insurance companies to pay for them. these doctors

wouldn't know what to do with the RESULTS of the tests! THAT IS THE

SAD TRUTH IMHO! I am a registered nurse and I very rarely see a

doctor order testing outside the norm (cbc, basic metabolic profile,

liver function tests etc...) They need a complete re-training to

understand how to interpret and treat the test results. I am not sure

they are willing to do this. Perhaps having them at the DAN

conference was a step in the right direction--only time will tell.

As a side note, I find it amazing that the only time you see a doctor

ordering Vit B 12, Thiamine or any other kind of vitamin is for the

chronic ETOH (alcoholic) patient to prevent DT's. Most doctors do not

understand the power of supplementation but rather only seem to

understand what the drug rep's are pushing that week. The same drug

reps that are in and out of their offices all day long feeding them

breakfast, lunch and dinner DAILY.

I guess I am too bitter to believe that the AAP is now embracing

alternative treatments. After so many years of arguing with my

daughters pediatrician I think I gave up hope on them!

Tina

>

> >

> > > I was at the DAN conference. I met a few doctors that were

trying

> to

> > > figure out a way to treat patients under the DAN protocol in

their

> > > mainstream office and have insurance cover it ... I'm just a

> mom,

> > > but I

> > > don't understand why insurance won't cover tests that show our

> > > children

> > > have immunological problems not a brain disorder.

> > >

> >

> > Actually, insurance will cover many of the tests. The problem

is

> > that the *labs* a regular doctor uses don't offer the same kind

of

> > extensive testing as the " autism labs " and in a lot of cases,

they

> > simply don't offer the test at all. For instance, I took a copy

> of

> > our allergy panel to my peds office (who doesn't believe in

> biomed)

> > and he was floored by the amount of foods covered. He flat out

> told

> > me that he could never have ordered a lab with that many foods as

> the

> > lab they use only test *6* foods. What we really need to do is

to

> > get the " autism labs " to become insurance friendly. The closest

> one

> > we have is GPL and they only accept BCBS. For those that have

> BCBS

> > it's almost always covered at 100% or close to. If there is

> demand,

> > " normal " labs will more than likely add these tests but there

> isn't

> > enough demand from normal peds and to be quite honest, most

normal

> > peds have *no clue* these tests exist in other labs. Labcorp has

> a

> > porphyrins test but most peds don't know about it because no one

> ever

> > goes to them to ask for one since most of our peds think we're

> nuts

> > anyway. I know with relative certainty if I went to my ped and

> asked

> > for the porphyrins test I would more than likely get a big spiel

> on

> > " why do you think you need one " and " I don't see the relationship

> so

> > I don't think we need to order one " and I'm sure I'd

> hear, " Really?

> > I didn't know they had that test. "

> >

> > Cheryl

> >

> >

> > >

> >

>