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A DAN! doctor is a doctor who is a part of the Defeat Autism Now! network. These

are MD's who stand behind the belief that Autsim and the autism spectrum (which

includes apraxia) are actually medical illnesses triggered by mercury exposure

that can be successfully treated. This practice is currently supported by the

best and most current research by those in the field of Autism.

DAN! doctors are simply identified by affiliation, and not a certification of

some sort. Not all practice the same techniques or medicine, and not all are

equally good. Treatments can be very expensive, as most insurance does not

consider Autism or the spectrum to be an illness, regardless of what science

says.

This approach of treatment is often referered to as the biomedical approach. It

requires the parent to be extremely knowledgeable about treatment approaches, as

you will be making many of the decisions regarding the interventions you want to

try.

Treatment involves, not always, mercury detoxification (called chelation), a

special diet that eliminates foods these children are often sensitive (not

allergic necessarily) to, supplements such as high dose vitamin c, minerals and

vitamins, often methyl b12 injections, sometimes an antiviral protocol, and

other supportive therapies. Some people are trying hyperbaric oxygen treatment,

for example.

Speech, occupational, ABA, and any other additional therapies are also

encouraged if they help.

My daughter was diagnosed two years ago with moderate verbal apraxia, sensory

integration disorder, and high functioning PDD. We started biomedical

interventions 18 months ago. She is now a mainstreamed kindergartener who fits

none of those diagnoses anymore. She is considered a recovered child.

Our experience is not the norm.

-------------- Original message --------------

From: " irishboney " <irishboney@...>

What the heck is a DAN doctor?

Thanks,

holly

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  • 2 weeks later...

Hi !

Please everyone be open when you read this

(I've had emails in private about this topic...so just my 2 cents)

There are many schools of thought on some of the points you address

as facts. Some do but most do not consider apraxia as on the autism

spectrum. Many with autism may have apraxia or some other

underlying speech impairment, but most with apraxia or other

impairments of speech do not have autism. Some do and some don't

consider DAN to have the " best and most current research by those in

the field of autism " . (Actually 's research is probably the

most amazing I've heard about ever....and she's a member of this

group)

Actually most don't (as Holly so eloquently points out) know what

the " heck " a " DAN doctor " is. If there was best and current

research to prove findings -you'd think pediatricians would at least

know what DAN is -that it's not the name of a child you are asking

about. To the newbies....DAN " doctors " are not necessarily medical

doctors or a PhD - a social worker could be a DAN " doctor " And

does 'anyone' including DAN doctors themselves ever really address

the answer to this question when asked? Why call yourself a doctor

when you are not a doctor? Especially when dealing with desperate

parents of very young children? It's misleading at best -dangerous

at worst...and is it right ethically or morally? Should it be

illegal?

My son Tanner's SLP Dr. Renai Jonas is listed as a DAN healthcare

practitioner here http://www.autismlink.com/services_search.php?zipcode=33430

(at least Dr. Jonas has her doctorate) When I told

Dr. Jonas that I didn't know she was a DAN doctor, she didn't know

what I was talking about...so how are people added to this list of

DAN Doctors? Is it just by going to conferences? I asked Dr. Jonas

if she ever attended a DAN conference (I had heard that's how you

become a DAN doctor) and she told me " I attend so many conferences I

can't recall if I attended one of them, but probably "

For those that emailed me in private -it 'is' OK to state here in

public that DAN for your own child was a waste of time and money.

It's OK for those like to say it cured her child of PDD, DSI

and apraxia in about 2 years. We can all state our own findings and

take away or leave any information we find important for our child.

We don't all know each other or each other's children....but.....

Perhaps one of the best and easiest ways to know if DAN works is to

join a support group. That's how we learned the fish oils worked -

and back then DAN's success rate was not worth the time and money to

try it. But a cure in 2 years if that is really true and not just a

misdiagnosis to begin with is worth exploring. Speaking of which,

lets pray that the worst " side effect " of DAN that we ever read about

here is that it's a waste of time and money, because in the media

there has been at least one death.

http://www.post-gazette.com/pg/05237/559756.stm

http://www.kevinleitch.co.uk/wp/?p=317

http://www.pittsburghlive.com/x/pittsburghtrib/s_367627.html

(and some pretty harsh attacks here)

http://photoninthedarkness.blogspot.com/2005/08/we-have-met-enemyand-he-is-us.ht\

ml

Below is an archive that shows why those that love the DAN approach,

just like those that love ABA, need to demand more controls.

> > >

> > > Hello everyone,

> > > It has been quite awhile since I have posted, but I have

> > continued

> > > to follow this incredible group with interest. A quick update:

> My

> > > youngest, CJ (apraxia, hypotonia, SID-dx 19 mo's), is now 4yrs

> old

> > > and has been completely exited from speech and OT! That is

not

> to

> > > say we won't still have work ahead of us-he still requires a

> > > tremendous amount of vestibular input, and has some minor

> sensory

> > > issues, but he is a chatterbox, and it is thanks in great

part

> to

> > > me finding this site and working like crazy with him. Thank

God

> > for

> > > EFa's and this group!

> > >

> > > Because the knowledge here never ceases to amaze me, I am

> turning

> > to

> > > you all for advice & help. I am so overwhelmed! My oldest

son,

> > now

> > > 8 1/2, has ADHD and Dyslexia. He is not on any prescribed

meds

> > > because we don't want to go that route. He has major trouble

> > > sleeping (up for the day between 4am-6am, crashes by 7pm), is

a

> > > generally worrisome kid, and a glass half empty kind of kid

> too!

> > He

> > > is not defiant, but gets so frustrated with his inability to

> focus

> > > on his schoolwork that he cries. He is perpetually in motion.

> We

> > > did Feingold for about a year & it helped, but it was

incredibly

> > > difficult outside of the home and I was the only one who

wanted

> to

> > > continue it. It actually heightened his anxiety,becasue he was

> > > always afraid to eat ANYTHING anywhere and was very sad about

> it.

> > I

> > > still do not allow any food dies or artificial falvorings, but

> do

> > > allow organic fruits, veggies, whole grains, & dairy.

> > > He is a sweet,kind,sensitive kid, and I am watching him become

> > more

> > > unhappy as time goes on because of his inability to focus on

> > school

> > > work. I took him to a DAN doc, who said he has a yeast

> overgrowth

> > > in his intestine from antibiotics (he has been on only 2x in

his

> > > entire life!), and I have to go GFCF, sugar free, and give him

> > TONS

> > > of supplements (over & $400.00 worth so far!) as well as treat

> him

> > > with Nyastatin once I have him GFCF and sugar free. He said

he

> > had

> > > no Lithium in his hair analysis, which contributes to

> depression,

> > so

> > > I need to supplement, and also had extremely low sodium and

> > > potassium. He also said he has *toxic*

> > > levels of uranium,gadolinium, and antimony in his hair

analysis

> > that

> > > he is going to want to *remove* down the road. My son sobbed

> > > during the visit when told he'd have to do gfcf and sf. I am

so

> > > overwhelemed. I know we will not be able to stay on this

> > > perpetually, so should I even bother? Should I just do the

> > > supplements (efas, primrose oil, trytophan, p5p, digestive

> > enzymes,

> > > multi vitamin, zinc, lithium) and let him eat

natural " healthy "

> > > foods? I am already over $2000.00 out of pocket. He also

said

> > > that I should put my 4yr old, whom he has never seen, on GFCF

&

> > > sugar free because he is

> > > apraxic! This Dan doc came highly recommended, but I am

> starting

> > > to wonder if they just prescribe GFCF for everyone no matter

> what

> > > the diagnosis. What do I do next? I am so overwhelmed by all

> of

> > > the research---enzymes, diet, supplements, meds, agghhh! I

just

> > > want to do the right thing for my son.

> > >

> > > Thanks for any and all input, and for reading this long post!

> > >

> > > ~ in PA

Re: GFCF/SF/ yeast/DAN/ for ADHD & Apraxia?-HELP!

as one like you that is all for " all natural " if possible -I

have to agree with . If your going to be doing all that, and

all that, that is unproven, and all that, that is unproven,

expensive, complicated -and not working (!) then why not meds?

And if one DAN doctor prescribes the exact same things for a child

who is severe autistic to one who has no issues...why can't we know

who this is? I know it's probably not the same DAN doctor

but same story -and with the amount of stuff he's got your son on,

off, doing,

taking and blood testing for...jeez! Just let me know this -is this

DAN doctor a medical doctor, not a medical doctor, a nutritionist?

One blood test fits all or what?

And this is not a DAN bashing -it's called a " bad doctor " bashing.

If someone talks like a duck as they say (quack) Any doctor who

sees a child going downhill with what they are doing should know

when it's time to refer to someone else. To me referral is a sign

of a good MD. And I'm sure some of of the good doctors are DAN

doctors.

We too would have gone the medication route for our ADHD son Dakota

if fish oils didn't work. In this group for years I was so

terrified to really let everyone know the dosages my kids were on

because we all started on the same " one capsule " a day. I can tell

you for a child your son's age however -one capsule of ProEFA -or

even two for that matter just isn't going to cut it to make the

difference. As you will see in the following messages we have

Dakota on 5 capsules of ProEFA and 5 capsules of ProEPA every day.

It's working amazing for him in that he's basically an A or high B

student -solid A when he tries, very social with tons of friends

and with a brilliant mind for architecture, imagination. He wants

to own Disney when he grows up and design all the roller coasters.

Dakota does not need any medications and I've told both my boys that

even if they don't " need " the EFAs as they get older they should

continue to take them for the rest of their lives because heart

disease runs in both their mom and dad's family.

If it were me I'd stop whatever you are able to stop without causing

harm and just try the fish oils. That's all we needed to do. In

fact Dakota's last neuroMD Dr. Sinha was so shocked by Dakota's

change she asked for the formula and if she could give some of her

other patients my number! But my favorite quote from her " There's

no reason for me to see Dakota again he is doing that amazing.

He'll probably make a great doctor. " (Dakota tests in the 99th

percentile -he really is brilliant -can you tell he's my baby?!! :o)

Here's the archives on this -let me know if you have other questions!

From: " kiddietalk " <kiddietalk@...>

Date: Sat May 28, 2005 11:49 pm

Subject: Re: [ ], what kind of EFA are your

kids taking? kiddietalk

My boys probably consume more EFAs than what I posted even because

we eat lots of seafood in our family. Dakota and Tanner both love

sushi, and Tanner's favorite sandwich to order when we go out to

dinner is a blackened dolphin (mahi mahi -the fish not the mammal-

the local fish where we live)

I find french fry, potato chip and doughnut oil scary -and because

they don't sell it in capsules people don't think much about how

much they consume a day. Tanner gets in reality less then a

tablespoon a day of fish oil.

If you check the archives -this may be the first time I've posted my

boy's dosage because what works for my boys at 8 and 10 years old

probably would be too high for those just starting. Highest amount

is what Tanner is taking now for him. Any higher and he starts to

regress in speech. He's taking what is the best dosage for him

right now. After a few years you get to know what works best.

Highest for humans? Read some of the stats below. I don't know if

anyone has the highest dosage. Then again -too much water you drown.

There's always such a thing as too much of a good thing.

Side effects that are positive other than what everyone knows

already -My children can be around someone with strept throat and

don't get sick -I do credit that to the EFAs too. They are doing

amazing in school and are very happy little boys. As I advise

here -all was discussed with my boy's neuroMDs. In the archives in

fact is the story of how pediatric neurologist Dr. Sinha asked me if

she can write down the formula and dosage we are using with Dakota

she was so amazed at the changes in him -she had thought he needed

medication that much. And side effects for adults? In addition to

what everyone knows like more focus, healthy, better recall and

memory etc. it makes you sharper at everything -like even when you

go to a casino party. (I won 15,000 dollars of play money tonight

and came in second place out of a ton of people and never played

craps before in my life -Glenn said now if I can just do that with

real gambling and not just a party!)

And about dosage...and as I said just yesterday. Dr. Stoll is the

one that opened my eyes to higher dosages of EFAs. So speaking of

Dr. Stoll -here are some quotes from his book that changed my

opinion about what a " high " dosage is!

15 pages with references to Eskimos in this book:

1. on Page 43:

" ... omega-6 to omega-3 ratios (approximately 1 to 1) are protected

from many of the scourges of the modern age. Greenland Eskimos

eating their traditional diet of fish, whale, and seal, for example,

have extremely low rates of heart disease. Their blood ... "

2. on Page 50:

" ... modern hunter- gatherer populations with diets closer to that

of our evolutionary past. It was the classic study of Greenland

Eskimos, conducted in the 1970s that drew attention to high

concentrations of omega-3 fatty acids in their diets, ultimately

linking the ... "

3. on Page 56:

" ... plenty of omega-3 fatty acids. Today, similar quantities of

omega-3 fatty acids are consumed by only a few groups, including

Eskimos and inhabitants of Japanese fishing villages (see Table 3-

1). ... "

4. on Page 79:

" ... great importance for public health, as diabetes is a huge cause

of death and disability. Piqued by finding the Inuit Eskimos have

surprisingly low rates of adult-onset diabetes, a team from

Australia's Garvan Institute of Medical Research fed laboratory rats

a ... "

5. on Page 83:

" ... chapter 6.) Researchers first connected essential fatty acid

imbalance to autoimmune disease in the 1970s, when they realized

that Greenland Eskimos consuming diets high in omega-3 fatty acids

rarely suffered from arthritis, asthma, or other disorders

associated with excess inflammation. Since ... "

6. on Page 97:

" ... the two urban populations, 0.68 percent for the rural region

and 0.44 percent for the pastoral region. Studies of Inuit Eskimos

as well as Malaysian, Dominican, and Nigerian women, all coastal

populations , have shown similar results. Compare this to the ... "

7. on Page 102:

" ... than 3.5 grains per day of EPA and DHA combined, have been

given to pregnant women in research studies. Nevertheless, Eskimo

women traditionally consume an average of 400 grams of seal and fish

per day (slightly less than a pound). This ... "

8. on Page 209:

" ... using EPA in dosages exceeding 8 grams per day, but higher

levels seem to be safe, since the traditional Greenland Eskimo diet

consisted of up to 14 grams per day. Anyone taking an anticlotting

agent such as warfarin (Coumadin), or high ... "

9. from Back Matter:

" ... Heart Trial, " The Lancet 1990;21;336:129-33. A. J. Parkinson et

al., " Elevated concentrations of plasma w-3 polyunsaturated fatty

acids among Alaskan Eskimos, " Am J Clin Nutr 1994;59:384-88. E. G.

Perkins and W J. Visek, eds., Dietary Fats and Health (Champaign ,

Ill.: ... "

10. from Back Matter:

" ... domestic meats, " Int y Biochem 1970;1:295-305. J. Dyerberg and

H. O. Bang, " Hemostatic function and platelet polyunsaturated fatty

acids in Eskimos, " The Lancet 1979;2:433-35. S. B. Eaton and M. J.

Konner, " Paleolithic nutrition revisited: a twelve- year

retrospective on its nature ... "

The Omega-3 Connection: The Groundbreaking Antidepression Diet and

Brain Program

by M.D., L. Stoll

~~~~~~~~~~~~~

Anyway -sounds like you are on the right track

Just keep going slow with increase and observe after each change.

=====

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Anyone who claims to be a doctor when they are not is committing

fraud. That has nothing to do with treatment of developmental

disorders. Both my kids have been treated by a Dan doctor (and yes,

she is a family practice M.D.), and they have both improved greatly.

Our doctor treats my kids based on their symptoms and labwork, and

based on her experience of what has helped other children with similar

issues. Our kids' supplements are mostly based on labwork that pointed

to a deficiency (actually the recently added vit E is NOT based on

labwork, but it has proved quite beneficial for my oldest, who has ASD

but not apraxia).

My 4 year old daughter no longer has apraxia or ASD, and I give a lot

of credit to the Dan approach for her recovery. She was doing horribly

two years ago, and would not have recovered without treatment. She is

no longer recognizable as the child who was diagnosed with ASD and

apraxia at age 2. There of course are no guarantees with treatment -

different children respond differently. My 6 year old has not

recovered from ASD, though he would more accurately be diagnosed with

ADHD now (that is, his remaining symptoms are consistent with ADHD,

not autism). He is doing very well socially, is only mildly language

delayed now, but has significant trouble with focus and attention, and

also some auditory processing problems. Both my kids have come a long

way from the head banging, sensory overload tantrums, the inability to

communicate verbally, extreme fine motor delays, and awful gut

problems. I look at pictures and video of both of them from just 2

years ago, and even though we have our difficulties now, we have come

a long, long way!

The reason that so many docs now recommend the gfcf diet to their

patients with ASD is because it works for such a large percentage of

kids with the disorder. Food testing may show a problem, but it is not

always accurate and varies from one lab to another - the best test is

a trial. The same applies with the recommendations for EFAs, B12

injections (there are studies that support the usefulness of them), B

vitamins and antioxidants that many Dan docs recommend. Most Dan docs

I know of do labwork to guide the choice of supplements.

My daughter is an amazing sucess story of how the Dan approach and ABA

can improve a child's outcome. She does not stand out from her peers

at all. She still has GI problems, and we still work with her Dan doc

on that. My son has benefitted from Dan and ABA, though he is not

recovered. I still think he may, and it may be that he will need

medication for his ADHD symptoms - we are still working to figure out

what he needs.

One last note - the child who died recently during IV chelation did

not die from chelation itself, but died because of a drug error. He

was given the wrong IV drug. His story is very sad, but it is not a

comment on chelation or Dan treatment. Unfortunately drug errors do

result in deaths more often than doctors and hospitals would want us

to believe.

> > > >

> > > > Hello everyone,

> > > > It has been quite awhile since I have posted, but I have

> > > continued

> > > > to follow this incredible group with interest. A quick update:

> > My

> > > > youngest, CJ (apraxia, hypotonia, SID-dx 19 mo's), is now 4yrs

> > old

> > > > and has been completely exited from speech and OT! That is

> not

> > to

> > > > say we won't still have work ahead of us-he still requires a

> > > > tremendous amount of vestibular input, and has some minor

> > sensory

> > > > issues, but he is a chatterbox, and it is thanks in great

> part

> > to

> > > > me finding this site and working like crazy with him. Thank

> God

> > > for

> > > > EFa's and this group!

> > > >

> > > > Because the knowledge here never ceases to amaze me, I am

> > turning

> > > to

> > > > you all for advice & help. I am so overwhelmed! My oldest

> son,

> > > now

> > > > 8 1/2, has ADHD and Dyslexia. He is not on any prescribed

> meds

> > > > because we don't want to go that route. He has major trouble

> > > > sleeping (up for the day between 4am-6am, crashes by 7pm), is

> a

> > > > generally worrisome kid, and a glass half empty kind of kid

> > too!

> > > He

> > > > is not defiant, but gets so frustrated with his inability to

> > focus

> > > > on his schoolwork that he cries. He is perpetually in motion.

> > We

> > > > did Feingold for about a year & it helped, but it was

> incredibly

> > > > difficult outside of the home and I was the only one who

> wanted

> > to

> > > > continue it. It actually heightened his anxiety,becasue he was

> > > > always afraid to eat ANYTHING anywhere and was very sad about

> > it.

> > > I

> > > > still do not allow any food dies or artificial falvorings, but

> > do

> > > > allow organic fruits, veggies, whole grains, & dairy.

> > > > He is a sweet,kind,sensitive kid, and I am watching him become

> > > more

> > > > unhappy as time goes on because of his inability to focus on

> > > school

> > > > work. I took him to a DAN doc, who said he has a yeast

> > overgrowth

> > > > in his intestine from antibiotics (he has been on only 2x in

> his

> > > > entire life!), and I have to go GFCF, sugar free, and give him

> > > TONS

> > > > of supplements (over & $400.00 worth so far!) as well as treat

> > him

> > > > with Nyastatin once I have him GFCF and sugar free. He said

> he

> > > had

> > > > no Lithium in his hair analysis, which contributes to

> > depression,

> > > so

> > > > I need to supplement, and also had extremely low sodium and

> > > > potassium. He also said he has *toxic*

> > > > levels of uranium,gadolinium, and antimony in his hair

> analysis

> > > that

> > > > he is going to want to *remove* down the road. My son sobbed

> > > > during the visit when told he'd have to do gfcf and sf. I am

> so

> > > > overwhelemed. I know we will not be able to stay on this

> > > > perpetually, so should I even bother? Should I just do the

> > > > supplements (efas, primrose oil, trytophan, p5p, digestive

> > > enzymes,

> > > > multi vitamin, zinc, lithium) and let him eat

> natural " healthy "

> > > > foods? I am already over $2000.00 out of pocket. He also

> said

> > > > that I should put my 4yr old, whom he has never seen, on GFCF

> &

> > > > sugar free because he is

> > > > apraxic! This Dan doc came highly recommended, but I am

> > starting

> > > > to wonder if they just prescribe GFCF for everyone no matter

> > what

> > > > the diagnosis. What do I do next? I am so overwhelmed by all

> > of

> > > > the research---enzymes, diet, supplements, meds, agghhh! I

> just

> > > > want to do the right thing for my son.

> > > >

> > > > Thanks for any and all input, and for reading this long post!

> > > >

> > > > ~ in PA

>

> Re: GFCF/SF/ yeast/DAN/ for ADHD & Apraxia?-HELP!

>

>

> as one like you that is all for " all natural " if possible -I

> have to agree with . If your going to be doing all that, and

> all that, that is unproven, and all that, that is unproven,

> expensive, complicated -and not working (!) then why not meds?

>

> And if one DAN doctor prescribes the exact same things for a child

> who is severe autistic to one who has no issues...why can't we know

> who this is? I know it's probably not the same DAN doctor

> but same story -and with the amount of stuff he's got your son on,

> off, doing,

> taking and blood testing for...jeez! Just let me know this -is this

> DAN doctor a medical doctor, not a medical doctor, a nutritionist?

> One blood test fits all or what?

>

> And this is not a DAN bashing -it's called a " bad doctor " bashing.

> If someone talks like a duck as they say (quack) Any doctor who

> sees a child going downhill with what they are doing should know

> when it's time to refer to someone else. To me referral is a sign

> of a good MD. And I'm sure some of of the good doctors are DAN

> doctors.

>

> We too would have gone the medication route for our ADHD son Dakota

> if fish oils didn't work. In this group for years I was so

> terrified to really let everyone know the dosages my kids were on

> because we all started on the same " one capsule " a day. I can tell

> you for a child your son's age however -one capsule of ProEFA -or

> even two for that matter just isn't going to cut it to make the

> difference. As you will see in the following messages we have

> Dakota on 5 capsules of ProEFA and 5 capsules of ProEPA every day.

> It's working amazing for him in that he's basically an A or high B

> student -solid A when he tries, very social with tons of friends

> and with a brilliant mind for architecture, imagination. He wants

> to own Disney when he grows up and design all the roller coasters.

>

> Dakota does not need any medications and I've told both my boys that

> even if they don't " need " the EFAs as they get older they should

> continue to take them for the rest of their lives because heart

> disease runs in both their mom and dad's family.

>

> If it were me I'd stop whatever you are able to stop without causing

> harm and just try the fish oils. That's all we needed to do. In

> fact Dakota's last neuroMD Dr. Sinha was so shocked by Dakota's

> change she asked for the formula and if she could give some of her

> other patients my number! But my favorite quote from her " There's

> no reason for me to see Dakota again he is doing that amazing.

> He'll probably make a great doctor. " (Dakota tests in the 99th

> percentile -he really is brilliant -can you tell he's my baby?!! :o)

>

> Here's the archives on this -let me know if you have other questions!

>

>

> From: " kiddietalk " <kiddietalk@...>

> Date: Sat May 28, 2005 11:49 pm

> Subject: Re: [ ], what kind of EFA are your

> kids taking? kiddietalk

>

> My boys probably consume more EFAs than what I posted even because

> we eat lots of seafood in our family. Dakota and Tanner both love

> sushi, and Tanner's favorite sandwich to order when we go out to

> dinner is a blackened dolphin (mahi mahi -the fish not the mammal-

> the local fish where we live)

>

> I find french fry, potato chip and doughnut oil scary -and because

> they don't sell it in capsules people don't think much about how

> much they consume a day. Tanner gets in reality less then a

> tablespoon a day of fish oil.

>

> If you check the archives -this may be the first time I've posted my

> boy's dosage because what works for my boys at 8 and 10 years old

> probably would be too high for those just starting. Highest amount

> is what Tanner is taking now for him. Any higher and he starts to

> regress in speech. He's taking what is the best dosage for him

> right now. After a few years you get to know what works best.

> Highest for humans? Read some of the stats below. I don't know if

> anyone has the highest dosage. Then again -too much water you drown.

> There's always such a thing as too much of a good thing.

>

> Side effects that are positive other than what everyone knows

> already -My children can be around someone with strept throat and

> don't get sick -I do credit that to the EFAs too. They are doing

> amazing in school and are very happy little boys. As I advise

> here -all was discussed with my boy's neuroMDs. In the archives in

> fact is the story of how pediatric neurologist Dr. Sinha asked me if

> she can write down the formula and dosage we are using with Dakota

> she was so amazed at the changes in him -she had thought he needed

> medication that much. And side effects for adults? In addition to

> what everyone knows like more focus, healthy, better recall and

> memory etc. it makes you sharper at everything -like even when you

> go to a casino party. (I won 15,000 dollars of play money tonight

> and came in second place out of a ton of people and never played

> craps before in my life -Glenn said now if I can just do that with

> real gambling and not just a party!)

>

> And about dosage...and as I said just yesterday. Dr. Stoll is the

> one that opened my eyes to higher dosages of EFAs. So speaking of

> Dr. Stoll -here are some quotes from his book that changed my

> opinion about what a " high " dosage is!

>

> 15 pages with references to Eskimos in this book:

>

> 1. on Page 43:

> " ... omega-6 to omega-3 ratios (approximately 1 to 1) are protected

> from many of the scourges of the modern age. Greenland Eskimos

> eating their traditional diet of fish, whale, and seal, for example,

> have extremely low rates of heart disease. Their blood ... "

> 2. on Page 50:

> " ... modern hunter- gatherer populations with diets closer to that

> of our evolutionary past. It was the classic study of Greenland

> Eskimos, conducted in the 1970s that drew attention to high

> concentrations of omega-3 fatty acids in their diets, ultimately

> linking the ... "

> 3. on Page 56:

> " ... plenty of omega-3 fatty acids. Today, similar quantities of

> omega-3 fatty acids are consumed by only a few groups, including

> Eskimos and inhabitants of Japanese fishing villages (see Table 3-

> 1). ... "

> 4. on Page 79:

> " ... great importance for public health, as diabetes is a huge cause

> of death and disability. Piqued by finding the Inuit Eskimos have

> surprisingly low rates of adult-onset diabetes, a team from

> Australia's Garvan Institute of Medical Research fed laboratory rats

> a ... "

> 5. on Page 83:

> " ... chapter 6.) Researchers first connected essential fatty acid

> imbalance to autoimmune disease in the 1970s, when they realized

> that Greenland Eskimos consuming diets high in omega-3 fatty acids

> rarely suffered from arthritis, asthma, or other disorders

> associated with excess inflammation. Since ... "

> 6. on Page 97:

> " ... the two urban populations, 0.68 percent for the rural region

> and 0.44 percent for the pastoral region. Studies of Inuit Eskimos

> as well as Malaysian, Dominican, and Nigerian women, all coastal

> populations , have shown similar results. Compare this to the ... "

> 7. on Page 102:

> " ... than 3.5 grains per day of EPA and DHA combined, have been

> given to pregnant women in research studies. Nevertheless, Eskimo

> women traditionally consume an average of 400 grams of seal and fish

> per day (slightly less than a pound). This ... "

> 8. on Page 209:

> " ... using EPA in dosages exceeding 8 grams per day, but higher

> levels seem to be safe, since the traditional Greenland Eskimo diet

> consisted of up to 14 grams per day. Anyone taking an anticlotting

> agent such as warfarin (Coumadin), or high ... "

> 9. from Back Matter:

> " ... Heart Trial, " The Lancet 1990;21;336:129-33. A. J. Parkinson et

> al., " Elevated concentrations of plasma w-3 polyunsaturated fatty

> acids among Alaskan Eskimos, " Am J Clin Nutr 1994;59:384-88. E. G.

> Perkins and W J. Visek, eds., Dietary Fats and Health (Champaign ,

> Ill.: ... "

> 10. from Back Matter:

> " ... domestic meats, " Int y Biochem 1970;1:295-305. J. Dyerberg and

> H. O. Bang, " Hemostatic function and platelet polyunsaturated fatty

> acids in Eskimos, " The Lancet 1979;2:433-35. S. B. Eaton and M. J.

> Konner, " Paleolithic nutrition revisited: a twelve- year

> retrospective on its nature ... "

>

> The Omega-3 Connection: The Groundbreaking Antidepression Diet and

> Brain Program

> by M.D., L. Stoll

>

> ~~~~~~~~~~~~~

>

> Anyway -sounds like you are on the right track

> Just keep going slow with increase and observe after each change.

>

> =====

>

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Hi !

Please everyone be open when you read this

(I've had emails in private about this topic...so just my 2 cents)

There are many schools of thought on some of the points you address

as facts. Some do but most do not consider apraxia as on the autism

spectrum. Many with autism may have apraxia or some other

underlying speech impairment, but most with apraxia or other

impairments of speech do not have autism. Some do and some don't

consider DAN to have the " best and most current research by those in

the field of autism " . (Actually 's research is probably the

most amazing I've heard about ever....and she's a member of this

group)

Actually most don't (as Holly so eloquently points out) know what

the " heck " a " DAN doctor " is. If there was best and current

research to prove findings -you'd think pediatricians would at least

know what DAN is -that it's not the name of a child you are asking

about. To the newbies....DAN " doctors " are not necessarily medical

doctors or a PhD - a social worker could be a DAN " doctor " And

does 'anyone' including DAN doctors themselves ever really address

the answer to this question when asked? Why call yourself a doctor

when you are not a doctor? Especially when dealing with desperate

parents of very young children? It's misleading at best -dangerous

at worst...and is it right ethically or morally? Should it be

illegal?

My son Tanner's SLP Dr. Renai Jonas is listed as a DAN healthcare

practitioner here http://www.autismlink.com/services_search.php?zipcode=33430

(at least Dr. Jonas has her doctorate) When I told

Dr. Jonas that I didn't know she was a DAN doctor, she didn't know

what I was talking about...so how are people added to this list of

DAN Doctors? Is it just by going to conferences? I asked Dr. Jonas

if she ever attended a DAN conference (I had heard that's how you

become a DAN doctor) and she told me " I attend so many conferences I

can't recall if I attended one of them, but probably "

For those that emailed me in private -it 'is' OK to state here in

public that DAN for your own child was a waste of time and money.

It's OK for those like to say it cured her child of PDD, DSI

and apraxia in about 2 years. We can all state our own findings and

take away or leave any information we find important for our child.

We don't all know each other or each other's children....but.....

Perhaps one of the best and easiest ways to know if DAN works is to

join a support group. That's how we learned the fish oils worked -

and back then DAN's success rate was not worth the time and money to

try it. But a cure in 2 years if that is really true and not just a

misdiagnosis to begin with is worth exploring. Speaking of which,

lets pray that the worst " side effect " of DAN that we ever read about

here is that it's a waste of time and money, because in the media

there has been at least one death.

http://www.post-gazette.com/pg/05237/559756.stm

http://www.kevinleitch.co.uk/wp/?p=317

http://www.pittsburghlive.com/x/pittsburghtrib/s_367627.html

(and some pretty harsh attacks here)

http://photoninthedarkness.blogspot.com/2005/08/we-have-met-enemyand-he-is-us.ht\

ml

Below is an archive that shows why those that love the DAN approach,

just like those that love ABA, need to demand more controls.

> > >

> > > Hello everyone,

> > > It has been quite awhile since I have posted, but I have

> > continued

> > > to follow this incredible group with interest. A quick update:

> My

> > > youngest, CJ (apraxia, hypotonia, SID-dx 19 mo's), is now 4yrs

> old

> > > and has been completely exited from speech and OT! That is

not

> to

> > > say we won't still have work ahead of us-he still requires a

> > > tremendous amount of vestibular input, and has some minor

> sensory

> > > issues, but he is a chatterbox, and it is thanks in great

part

> to

> > > me finding this site and working like crazy with him. Thank

God

> > for

> > > EFa's and this group!

> > >

> > > Because the knowledge here never ceases to amaze me, I am

> turning

> > to

> > > you all for advice & help. I am so overwhelmed! My oldest

son,

> > now

> > > 8 1/2, has ADHD and Dyslexia. He is not on any prescribed

meds

> > > because we don't want to go that route. He has major trouble

> > > sleeping (up for the day between 4am-6am, crashes by 7pm), is

a

> > > generally worrisome kid, and a glass half empty kind of kid

> too!

> > He

> > > is not defiant, but gets so frustrated with his inability to

> focus

> > > on his schoolwork that he cries. He is perpetually in motion.

> We

> > > did Feingold for about a year & it helped, but it was

incredibly

> > > difficult outside of the home and I was the only one who

wanted

> to

> > > continue it. It actually heightened his anxiety,becasue he was

> > > always afraid to eat ANYTHING anywhere and was very sad about

> it.

> > I

> > > still do not allow any food dies or artificial falvorings, but

> do

> > > allow organic fruits, veggies, whole grains, & dairy.

> > > He is a sweet,kind,sensitive kid, and I am watching him become

> > more

> > > unhappy as time goes on because of his inability to focus on

> > school

> > > work. I took him to a DAN doc, who said he has a yeast

> overgrowth

> > > in his intestine from antibiotics (he has been on only 2x in

his

> > > entire life!), and I have to go GFCF, sugar free, and give him

> > TONS

> > > of supplements (over & $400.00 worth so far!) as well as treat

> him

> > > with Nyastatin once I have him GFCF and sugar free. He said

he

> > had

> > > no Lithium in his hair analysis, which contributes to

> depression,

> > so

> > > I need to supplement, and also had extremely low sodium and

> > > potassium. He also said he has *toxic*

> > > levels of uranium,gadolinium, and antimony in his hair

analysis

> > that

> > > he is going to want to *remove* down the road. My son sobbed

> > > during the visit when told he'd have to do gfcf and sf. I am

so

> > > overwhelemed. I know we will not be able to stay on this

> > > perpetually, so should I even bother? Should I just do the

> > > supplements (efas, primrose oil, trytophan, p5p, digestive

> > enzymes,

> > > multi vitamin, zinc, lithium) and let him eat

natural " healthy "

> > > foods? I am already over $2000.00 out of pocket. He also

said

> > > that I should put my 4yr old, whom he has never seen, on GFCF

&

> > > sugar free because he is

> > > apraxic! This Dan doc came highly recommended, but I am

> starting

> > > to wonder if they just prescribe GFCF for everyone no matter

> what

> > > the diagnosis. What do I do next? I am so overwhelmed by all

> of

> > > the research---enzymes, diet, supplements, meds, agghhh! I

just

> > > want to do the right thing for my son.

> > >

> > > Thanks for any and all input, and for reading this long post!

> > >

> > > ~ in PA

Re: GFCF/SF/ yeast/DAN/ for ADHD & Apraxia?-HELP!

as one like you that is all for " all natural " if possible -I

have to agree with . If your going to be doing all that, and

all that, that is unproven, and all that, that is unproven,

expensive, complicated -and not working (!) then why not meds?

And if one DAN doctor prescribes the exact same things for a child

who is severe autistic to one who has no issues...why can't we know

who this is? I know it's probably not the same DAN doctor

but same story -and with the amount of stuff he's got your son on,

off, doing,

taking and blood testing for...jeez! Just let me know this -is this

DAN doctor a medical doctor, not a medical doctor, a nutritionist?

One blood test fits all or what?

And this is not a DAN bashing -it's called a " bad doctor " bashing.

If someone talks like a duck as they say (quack) Any doctor who

sees a child going downhill with what they are doing should know

when it's time to refer to someone else. To me referral is a sign

of a good MD. And I'm sure some of of the good doctors are DAN

doctors.

We too would have gone the medication route for our ADHD son Dakota

if fish oils didn't work. In this group for years I was so

terrified to really let everyone know the dosages my kids were on

because we all started on the same " one capsule " a day. I can tell

you for a child your son's age however -one capsule of ProEFA -or

even two for that matter just isn't going to cut it to make the

difference. As you will see in the following messages we have

Dakota on 5 capsules of ProEFA and 5 capsules of ProEPA every day.

It's working amazing for him in that he's basically an A or high B

student -solid A when he tries, very social with tons of friends

and with a brilliant mind for architecture, imagination. He wants

to own Disney when he grows up and design all the roller coasters.

Dakota does not need any medications and I've told both my boys that

even if they don't " need " the EFAs as they get older they should

continue to take them for the rest of their lives because heart

disease runs in both their mom and dad's family.

If it were me I'd stop whatever you are able to stop without causing

harm and just try the fish oils. That's all we needed to do. In

fact Dakota's last neuroMD Dr. Sinha was so shocked by Dakota's

change she asked for the formula and if she could give some of her

other patients my number! But my favorite quote from her " There's

no reason for me to see Dakota again he is doing that amazing.

He'll probably make a great doctor. " (Dakota tests in the 99th

percentile -he really is brilliant -can you tell he's my baby?!! :o)

Here's the archives on this -let me know if you have other questions!

From: " kiddietalk " <kiddietalk@...>

Date: Sat May 28, 2005 11:49 pm

Subject: Re: [ ], what kind of EFA are your

kids taking? kiddietalk

My boys probably consume more EFAs than what I posted even because

we eat lots of seafood in our family. Dakota and Tanner both love

sushi, and Tanner's favorite sandwich to order when we go out to

dinner is a blackened dolphin (mahi mahi -the fish not the mammal-

the local fish where we live)

I find french fry, potato chip and doughnut oil scary -and because

they don't sell it in capsules people don't think much about how

much they consume a day. Tanner gets in reality less then a

tablespoon a day of fish oil.

If you check the archives -this may be the first time I've posted my

boy's dosage because what works for my boys at 8 and 10 years old

probably would be too high for those just starting. Highest amount

is what Tanner is taking now for him. Any higher and he starts to

regress in speech. He's taking what is the best dosage for him

right now. After a few years you get to know what works best.

Highest for humans? Read some of the stats below. I don't know if

anyone has the highest dosage. Then again -too much water you drown.

There's always such a thing as too much of a good thing.

Side effects that are positive other than what everyone knows

already -My children can be around someone with strept throat and

don't get sick -I do credit that to the EFAs too. They are doing

amazing in school and are very happy little boys. As I advise

here -all was discussed with my boy's neuroMDs. In the archives in

fact is the story of how pediatric neurologist Dr. Sinha asked me if

she can write down the formula and dosage we are using with Dakota

she was so amazed at the changes in him -she had thought he needed

medication that much. And side effects for adults? In addition to

what everyone knows like more focus, healthy, better recall and

memory etc. it makes you sharper at everything -like even when you

go to a casino party. (I won 15,000 dollars of play money tonight

and came in second place out of a ton of people and never played

craps before in my life -Glenn said now if I can just do that with

real gambling and not just a party!)

And about dosage...and as I said just yesterday. Dr. Stoll is the

one that opened my eyes to higher dosages of EFAs. So speaking of

Dr. Stoll -here are some quotes from his book that changed my

opinion about what a " high " dosage is!

15 pages with references to Eskimos in this book:

1. on Page 43:

" ... omega-6 to omega-3 ratios (approximately 1 to 1) are protected

from many of the scourges of the modern age. Greenland Eskimos

eating their traditional diet of fish, whale, and seal, for example,

have extremely low rates of heart disease. Their blood ... "

2. on Page 50:

" ... modern hunter- gatherer populations with diets closer to that

of our evolutionary past. It was the classic study of Greenland

Eskimos, conducted in the 1970s that drew attention to high

concentrations of omega-3 fatty acids in their diets, ultimately

linking the ... "

3. on Page 56:

" ... plenty of omega-3 fatty acids. Today, similar quantities of

omega-3 fatty acids are consumed by only a few groups, including

Eskimos and inhabitants of Japanese fishing villages (see Table 3-

1). ... "

4. on Page 79:

" ... great importance for public health, as diabetes is a huge cause

of death and disability. Piqued by finding the Inuit Eskimos have

surprisingly low rates of adult-onset diabetes, a team from

Australia's Garvan Institute of Medical Research fed laboratory rats

a ... "

5. on Page 83:

" ... chapter 6.) Researchers first connected essential fatty acid

imbalance to autoimmune disease in the 1970s, when they realized

that Greenland Eskimos consuming diets high in omega-3 fatty acids

rarely suffered from arthritis, asthma, or other disorders

associated with excess inflammation. Since ... "

6. on Page 97:

" ... the two urban populations, 0.68 percent for the rural region

and 0.44 percent for the pastoral region. Studies of Inuit Eskimos

as well as Malaysian, Dominican, and Nigerian women, all coastal

populations , have shown similar results. Compare this to the ... "

7. on Page 102:

" ... than 3.5 grains per day of EPA and DHA combined, have been

given to pregnant women in research studies. Nevertheless, Eskimo

women traditionally consume an average of 400 grams of seal and fish

per day (slightly less than a pound). This ... "

8. on Page 209:

" ... using EPA in dosages exceeding 8 grams per day, but higher

levels seem to be safe, since the traditional Greenland Eskimo diet

consisted of up to 14 grams per day. Anyone taking an anticlotting

agent such as warfarin (Coumadin), or high ... "

9. from Back Matter:

" ... Heart Trial, " The Lancet 1990;21;336:129-33. A. J. Parkinson et

al., " Elevated concentrations of plasma w-3 polyunsaturated fatty

acids among Alaskan Eskimos, " Am J Clin Nutr 1994;59:384-88. E. G.

Perkins and W J. Visek, eds., Dietary Fats and Health (Champaign ,

Ill.: ... "

10. from Back Matter:

" ... domestic meats, " Int y Biochem 1970;1:295-305. J. Dyerberg and

H. O. Bang, " Hemostatic function and platelet polyunsaturated fatty

acids in Eskimos, " The Lancet 1979;2:433-35. S. B. Eaton and M. J.

Konner, " Paleolithic nutrition revisited: a twelve- year

retrospective on its nature ... "

The Omega-3 Connection: The Groundbreaking Antidepression Diet and

Brain Program

by M.D., L. Stoll

~~~~~~~~~~~~~

Anyway -sounds like you are on the right track

Just keep going slow with increase and observe after each change.

=====

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Anyone who claims to be a doctor when they are not is committing

fraud. That has nothing to do with treatment of developmental

disorders. Both my kids have been treated by a Dan doctor (and yes,

she is a family practice M.D.), and they have both improved greatly.

Our doctor treats my kids based on their symptoms and labwork, and

based on her experience of what has helped other children with similar

issues. Our kids' supplements are mostly based on labwork that pointed

to a deficiency (actually the recently added vit E is NOT based on

labwork, but it has proved quite beneficial for my oldest, who has ASD

but not apraxia).

My 4 year old daughter no longer has apraxia or ASD, and I give a lot

of credit to the Dan approach for her recovery. She was doing horribly

two years ago, and would not have recovered without treatment. She is

no longer recognizable as the child who was diagnosed with ASD and

apraxia at age 2. There of course are no guarantees with treatment -

different children respond differently. My 6 year old has not

recovered from ASD, though he would more accurately be diagnosed with

ADHD now (that is, his remaining symptoms are consistent with ADHD,

not autism). He is doing very well socially, is only mildly language

delayed now, but has significant trouble with focus and attention, and

also some auditory processing problems. Both my kids have come a long

way from the head banging, sensory overload tantrums, the inability to

communicate verbally, extreme fine motor delays, and awful gut

problems. I look at pictures and video of both of them from just 2

years ago, and even though we have our difficulties now, we have come

a long, long way!

The reason that so many docs now recommend the gfcf diet to their

patients with ASD is because it works for such a large percentage of

kids with the disorder. Food testing may show a problem, but it is not

always accurate and varies from one lab to another - the best test is

a trial. The same applies with the recommendations for EFAs, B12

injections (there are studies that support the usefulness of them), B

vitamins and antioxidants that many Dan docs recommend. Most Dan docs

I know of do labwork to guide the choice of supplements.

My daughter is an amazing sucess story of how the Dan approach and ABA

can improve a child's outcome. She does not stand out from her peers

at all. She still has GI problems, and we still work with her Dan doc

on that. My son has benefitted from Dan and ABA, though he is not

recovered. I still think he may, and it may be that he will need

medication for his ADHD symptoms - we are still working to figure out

what he needs.

One last note - the child who died recently during IV chelation did

not die from chelation itself, but died because of a drug error. He

was given the wrong IV drug. His story is very sad, but it is not a

comment on chelation or Dan treatment. Unfortunately drug errors do

result in deaths more often than doctors and hospitals would want us

to believe.

> > > >

> > > > Hello everyone,

> > > > It has been quite awhile since I have posted, but I have

> > > continued

> > > > to follow this incredible group with interest. A quick update:

> > My

> > > > youngest, CJ (apraxia, hypotonia, SID-dx 19 mo's), is now 4yrs

> > old

> > > > and has been completely exited from speech and OT! That is

> not

> > to

> > > > say we won't still have work ahead of us-he still requires a

> > > > tremendous amount of vestibular input, and has some minor

> > sensory

> > > > issues, but he is a chatterbox, and it is thanks in great

> part

> > to

> > > > me finding this site and working like crazy with him. Thank

> God

> > > for

> > > > EFa's and this group!

> > > >

> > > > Because the knowledge here never ceases to amaze me, I am

> > turning

> > > to

> > > > you all for advice & help. I am so overwhelmed! My oldest

> son,

> > > now

> > > > 8 1/2, has ADHD and Dyslexia. He is not on any prescribed

> meds

> > > > because we don't want to go that route. He has major trouble

> > > > sleeping (up for the day between 4am-6am, crashes by 7pm), is

> a

> > > > generally worrisome kid, and a glass half empty kind of kid

> > too!

> > > He

> > > > is not defiant, but gets so frustrated with his inability to

> > focus

> > > > on his schoolwork that he cries. He is perpetually in motion.

> > We

> > > > did Feingold for about a year & it helped, but it was

> incredibly

> > > > difficult outside of the home and I was the only one who

> wanted

> > to

> > > > continue it. It actually heightened his anxiety,becasue he was

> > > > always afraid to eat ANYTHING anywhere and was very sad about

> > it.

> > > I

> > > > still do not allow any food dies or artificial falvorings, but

> > do

> > > > allow organic fruits, veggies, whole grains, & dairy.

> > > > He is a sweet,kind,sensitive kid, and I am watching him become

> > > more

> > > > unhappy as time goes on because of his inability to focus on

> > > school

> > > > work. I took him to a DAN doc, who said he has a yeast

> > overgrowth

> > > > in his intestine from antibiotics (he has been on only 2x in

> his

> > > > entire life!), and I have to go GFCF, sugar free, and give him

> > > TONS

> > > > of supplements (over & $400.00 worth so far!) as well as treat

> > him

> > > > with Nyastatin once I have him GFCF and sugar free. He said

> he

> > > had

> > > > no Lithium in his hair analysis, which contributes to

> > depression,

> > > so

> > > > I need to supplement, and also had extremely low sodium and

> > > > potassium. He also said he has *toxic*

> > > > levels of uranium,gadolinium, and antimony in his hair

> analysis

> > > that

> > > > he is going to want to *remove* down the road. My son sobbed

> > > > during the visit when told he'd have to do gfcf and sf. I am

> so

> > > > overwhelemed. I know we will not be able to stay on this

> > > > perpetually, so should I even bother? Should I just do the

> > > > supplements (efas, primrose oil, trytophan, p5p, digestive

> > > enzymes,

> > > > multi vitamin, zinc, lithium) and let him eat

> natural " healthy "

> > > > foods? I am already over $2000.00 out of pocket. He also

> said

> > > > that I should put my 4yr old, whom he has never seen, on GFCF

> &

> > > > sugar free because he is

> > > > apraxic! This Dan doc came highly recommended, but I am

> > starting

> > > > to wonder if they just prescribe GFCF for everyone no matter

> > what

> > > > the diagnosis. What do I do next? I am so overwhelmed by all

> > of

> > > > the research---enzymes, diet, supplements, meds, agghhh! I

> just

> > > > want to do the right thing for my son.

> > > >

> > > > Thanks for any and all input, and for reading this long post!

> > > >

> > > > ~ in PA

>

> Re: GFCF/SF/ yeast/DAN/ for ADHD & Apraxia?-HELP!

>

>

> as one like you that is all for " all natural " if possible -I

> have to agree with . If your going to be doing all that, and

> all that, that is unproven, and all that, that is unproven,

> expensive, complicated -and not working (!) then why not meds?

>

> And if one DAN doctor prescribes the exact same things for a child

> who is severe autistic to one who has no issues...why can't we know

> who this is? I know it's probably not the same DAN doctor

> but same story -and with the amount of stuff he's got your son on,

> off, doing,

> taking and blood testing for...jeez! Just let me know this -is this

> DAN doctor a medical doctor, not a medical doctor, a nutritionist?

> One blood test fits all or what?

>

> And this is not a DAN bashing -it's called a " bad doctor " bashing.

> If someone talks like a duck as they say (quack) Any doctor who

> sees a child going downhill with what they are doing should know

> when it's time to refer to someone else. To me referral is a sign

> of a good MD. And I'm sure some of of the good doctors are DAN

> doctors.

>

> We too would have gone the medication route for our ADHD son Dakota

> if fish oils didn't work. In this group for years I was so

> terrified to really let everyone know the dosages my kids were on

> because we all started on the same " one capsule " a day. I can tell

> you for a child your son's age however -one capsule of ProEFA -or

> even two for that matter just isn't going to cut it to make the

> difference. As you will see in the following messages we have

> Dakota on 5 capsules of ProEFA and 5 capsules of ProEPA every day.

> It's working amazing for him in that he's basically an A or high B

> student -solid A when he tries, very social with tons of friends

> and with a brilliant mind for architecture, imagination. He wants

> to own Disney when he grows up and design all the roller coasters.

>

> Dakota does not need any medications and I've told both my boys that

> even if they don't " need " the EFAs as they get older they should

> continue to take them for the rest of their lives because heart

> disease runs in both their mom and dad's family.

>

> If it were me I'd stop whatever you are able to stop without causing

> harm and just try the fish oils. That's all we needed to do. In

> fact Dakota's last neuroMD Dr. Sinha was so shocked by Dakota's

> change she asked for the formula and if she could give some of her

> other patients my number! But my favorite quote from her " There's

> no reason for me to see Dakota again he is doing that amazing.

> He'll probably make a great doctor. " (Dakota tests in the 99th

> percentile -he really is brilliant -can you tell he's my baby?!! :o)

>

> Here's the archives on this -let me know if you have other questions!

>

>

> From: " kiddietalk " <kiddietalk@...>

> Date: Sat May 28, 2005 11:49 pm

> Subject: Re: [ ], what kind of EFA are your

> kids taking? kiddietalk

>

> My boys probably consume more EFAs than what I posted even because

> we eat lots of seafood in our family. Dakota and Tanner both love

> sushi, and Tanner's favorite sandwich to order when we go out to

> dinner is a blackened dolphin (mahi mahi -the fish not the mammal-

> the local fish where we live)

>

> I find french fry, potato chip and doughnut oil scary -and because

> they don't sell it in capsules people don't think much about how

> much they consume a day. Tanner gets in reality less then a

> tablespoon a day of fish oil.

>

> If you check the archives -this may be the first time I've posted my

> boy's dosage because what works for my boys at 8 and 10 years old

> probably would be too high for those just starting. Highest amount

> is what Tanner is taking now for him. Any higher and he starts to

> regress in speech. He's taking what is the best dosage for him

> right now. After a few years you get to know what works best.

> Highest for humans? Read some of the stats below. I don't know if

> anyone has the highest dosage. Then again -too much water you drown.

> There's always such a thing as too much of a good thing.

>

> Side effects that are positive other than what everyone knows

> already -My children can be around someone with strept throat and

> don't get sick -I do credit that to the EFAs too. They are doing

> amazing in school and are very happy little boys. As I advise

> here -all was discussed with my boy's neuroMDs. In the archives in

> fact is the story of how pediatric neurologist Dr. Sinha asked me if

> she can write down the formula and dosage we are using with Dakota

> she was so amazed at the changes in him -she had thought he needed

> medication that much. And side effects for adults? In addition to

> what everyone knows like more focus, healthy, better recall and

> memory etc. it makes you sharper at everything -like even when you

> go to a casino party. (I won 15,000 dollars of play money tonight

> and came in second place out of a ton of people and never played

> craps before in my life -Glenn said now if I can just do that with

> real gambling and not just a party!)

>

> And about dosage...and as I said just yesterday. Dr. Stoll is the

> one that opened my eyes to higher dosages of EFAs. So speaking of

> Dr. Stoll -here are some quotes from his book that changed my

> opinion about what a " high " dosage is!

>

> 15 pages with references to Eskimos in this book:

>

> 1. on Page 43:

> " ... omega-6 to omega-3 ratios (approximately 1 to 1) are protected

> from many of the scourges of the modern age. Greenland Eskimos

> eating their traditional diet of fish, whale, and seal, for example,

> have extremely low rates of heart disease. Their blood ... "

> 2. on Page 50:

> " ... modern hunter- gatherer populations with diets closer to that

> of our evolutionary past. It was the classic study of Greenland

> Eskimos, conducted in the 1970s that drew attention to high

> concentrations of omega-3 fatty acids in their diets, ultimately

> linking the ... "

> 3. on Page 56:

> " ... plenty of omega-3 fatty acids. Today, similar quantities of

> omega-3 fatty acids are consumed by only a few groups, including

> Eskimos and inhabitants of Japanese fishing villages (see Table 3-

> 1). ... "

> 4. on Page 79:

> " ... great importance for public health, as diabetes is a huge cause

> of death and disability. Piqued by finding the Inuit Eskimos have

> surprisingly low rates of adult-onset diabetes, a team from

> Australia's Garvan Institute of Medical Research fed laboratory rats

> a ... "

> 5. on Page 83:

> " ... chapter 6.) Researchers first connected essential fatty acid

> imbalance to autoimmune disease in the 1970s, when they realized

> that Greenland Eskimos consuming diets high in omega-3 fatty acids

> rarely suffered from arthritis, asthma, or other disorders

> associated with excess inflammation. Since ... "

> 6. on Page 97:

> " ... the two urban populations, 0.68 percent for the rural region

> and 0.44 percent for the pastoral region. Studies of Inuit Eskimos

> as well as Malaysian, Dominican, and Nigerian women, all coastal

> populations , have shown similar results. Compare this to the ... "

> 7. on Page 102:

> " ... than 3.5 grains per day of EPA and DHA combined, have been

> given to pregnant women in research studies. Nevertheless, Eskimo

> women traditionally consume an average of 400 grams of seal and fish

> per day (slightly less than a pound). This ... "

> 8. on Page 209:

> " ... using EPA in dosages exceeding 8 grams per day, but higher

> levels seem to be safe, since the traditional Greenland Eskimo diet

> consisted of up to 14 grams per day. Anyone taking an anticlotting

> agent such as warfarin (Coumadin), or high ... "

> 9. from Back Matter:

> " ... Heart Trial, " The Lancet 1990;21;336:129-33. A. J. Parkinson et

> al., " Elevated concentrations of plasma w-3 polyunsaturated fatty

> acids among Alaskan Eskimos, " Am J Clin Nutr 1994;59:384-88. E. G.

> Perkins and W J. Visek, eds., Dietary Fats and Health (Champaign ,

> Ill.: ... "

> 10. from Back Matter:

> " ... domestic meats, " Int y Biochem 1970;1:295-305. J. Dyerberg and

> H. O. Bang, " Hemostatic function and platelet polyunsaturated fatty

> acids in Eskimos, " The Lancet 1979;2:433-35. S. B. Eaton and M. J.

> Konner, " Paleolithic nutrition revisited: a twelve- year

> retrospective on its nature ... "

>

> The Omega-3 Connection: The Groundbreaking Antidepression Diet and

> Brain Program

> by M.D., L. Stoll

>

> ~~~~~~~~~~~~~

>

> Anyway -sounds like you are on the right track

> Just keep going slow with increase and observe after each change.

>

> =====

>

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Share on other sites

HI

I'm not Pro-DAN doctors or Anti-DAN doctors but I am big on accuracy of

reporting in the media. If folks want to see DAN doctors I just think

they need to do their own research so they can make informed decisions.

Part of that research needs to be not depending on the media outlets

for your medical information. The report about this child was greatly

skewed when it hit the newswires and became so sensationalized that it

hit all the news magazines.

It is my understanding that the DAN-related death that occurred was due

to an error in the application of the DAN protocol. This child didn't

die because he was being chelated. This child died from a medication

error. The nurse administered the wrong medication. It was a med that

was very similar in name and had an identical label. (Look alike/sound

alike medications are a big problem in healthcare but the FDA does

little to force companies to change their labeling). In this case the

child should have received Calcium Disodium EDTA. Instead he received

Disodium EDTA. They have identical labels and look alike when placed

side by side. So, the death occurred not because of a DAN protocol

treatment, it occurred due to a medication error and thousands of

people die each year in U.S. hospitals due to medication errors.

Dateline, etc didn't report that it was a medication error. They only

told their viewers that the child was getting a controversial treatment

and that hundreds of more children can die if this continues, etc. ABC

news did the same thing. If our media would maybe give as much

attention to those thousands of deaths in U.S. hospitals each year

maybe we'd have better protection for our nurses against mandatory

overtime, high patient loads etc that lead to decreased patient safety.

I guess such things aren't nearly as newsworthy.

Kris

On Oct 16, 2006, at 5:22 PM, kiddietalk wrote:

> Hi !

>

> Please everyone be open when you read this

> (I've had emails in private about this topic...so just my 2 cents)

>

> There are many schools of thought on some of the points you address

> as facts. Some do but most do not consider apraxia as on the autism

> spectrum. Many with autism may have apraxia or some other

> underlying speech impairment, but most with apraxia or other

> impairments of speech do not have autism. Some do and some don't

> consider DAN to have the " best and most current research by those in

> the field of autism " . (Actually 's research is probably the

> most amazing I've heard about ever....and she's a member of this

> group)

>

> Actually most don't (as Holly so eloquently points out) know what

> the " heck " a " DAN doctor " is. If there was best and current

> research to prove findings -you'd think pediatricians would at least

> know what DAN is -that it's not the name of a child you are asking

> about. To the newbies....DAN " doctors " are not necessarily medical

> doctors or a PhD - a social worker could be a DAN " doctor " And

> does 'anyone' including DAN doctors themselves ever really address

> the answer to this question when asked? Why call yourself a doctor

> when you are not a doctor? Especially when dealing with desperate

> parents of very young children? It's misleading at best -dangerous

> at worst...and is it right ethically or morally? Should it be

> illegal?

>

> My son Tanner's SLP Dr. Renai Jonas is listed as a DAN healthcare

> practitioner here

> http://www.autismlink.com/services_search.php?zipcode=33430 (at least

> Dr. Jonas has her doctorate) When I told

> Dr. Jonas that I didn't know she was a DAN doctor, she didn't know

> what I was talking about...so how are people added to this list of

> DAN Doctors? Is it just by going to conferences? I asked Dr. Jonas

> if she ever attended a DAN conference (I had heard that's how you

> become a DAN doctor) and she told me " I attend so many conferences I

> can't recall if I attended one of them, but probably "

>

> For those that emailed me in private -it 'is' OK to state here in

> public that DAN for your own child was a waste of time and money.

> It's OK for those like to say it cured her child of PDD, DSI

> and apraxia in about 2 years. We can all state our own findings and

> take away or leave any information we find important for our child.

> We don't all know each other or each other's children....but.....

> Perhaps one of the best and easiest ways to know if DAN works is to

> join a support group. That's how we learned the fish oils worked -

> and back then DAN's success rate was not worth the time and money to

> try it. But a cure in 2 years if that is really true and not just a

> misdiagnosis to begin with is worth exploring. Speaking of which,

> lets pray that the worst " side effect " of DAN that we ever read about

> here is that it's a waste of time and money, because in the media

> there has been at least one death.

>

> http://www.post-gazette.com/pg/05237/559756.stm

> http://www.kevinleitch.co.uk/wp/?p=317

> http://www.pittsburghlive.com/x/pittsburghtrib/s_367627.html

>

> (and some pretty harsh attacks here)

> http://photoninthedarkness.blogspot.com/2005/08/we-have-met-enemyand-

> he-is-us.html

>

> Below is an archive that shows why those that love the DAN approach,

> just like those that love ABA, need to demand more controls.

>

>

> > > >

> > > > Hello everyone,

> > > > It has been quite awhile since I have posted, but I have

> > > continued

> > > > to follow this incredible group with interest. A quick update:

> > My

> > > > youngest, CJ (apraxia, hypotonia, SID-dx 19 mo's), is now 4yrs

> > old

> > > > and has been completely exited from speech and OT! That is

> not

> > to

> > > > say we won't still have work ahead of us-he still requires a

> > > > tremendous amount of vestibular input, and has some minor

> > sensory

> > > > issues, but he is a chatterbox, and it is thanks in great

> part

> > to

> > > > me finding this site and working like crazy with him. Thank

> God

> > > for

> > > > EFa's and this group!

> > > >

> > > > Because the knowledge here never ceases to amaze me, I am

> > turning

> > > to

> > > > you all for advice & help. I am so overwhelmed! My oldest

> son,

> > > now

> > > > 8 1/2, has ADHD and Dyslexia. He is not on any prescribed

> meds

> > > > because we don't want to go that route. He has major trouble

> > > > sleeping (up for the day between 4am-6am, crashes by 7pm), is

> a

> > > > generally worrisome kid, and a glass half empty kind of kid

> > too!

> > > He

> > > > is not defiant, but gets so frustrated with his inability to

> > focus

> > > > on his schoolwork that he cries. He is perpetually in motion.

> > We

> > > > did Feingold for about a year & it helped, but it was

> incredibly

> > > > difficult outside of the home and I was the only one who

> wanted

> > to

> > > > continue it. It actually heightened his anxiety,becasue he was

> > > > always afraid to eat ANYTHING anywhere and was very sad about

> > it.

> > > I

> > > > still do not allow any food dies or artificial falvorings, but

> > do

> > > > allow organic fruits, veggies, whole grains, & dairy.

> > > > He is a sweet,kind,sensitive kid, and I am watching him become

> > > more

> > > > unhappy as time goes on because of his inability to focus on

> > > school

> > > > work. I took him to a DAN doc, who said he has a yeast

> > overgrowth

> > > > in his intestine from antibiotics (he has been on only 2x in

> his

> > > > entire life!), and I have to go GFCF, sugar free, and give him

> > > TONS

> > > > of supplements (over & $400.00 worth so far!) as well as treat

> > him

> > > > with Nyastatin once I have him GFCF and sugar free. He said

> he

> > > had

> > > > no Lithium in his hair analysis, which contributes to

> > depression,

> > > so

> > > > I need to supplement, and also had extremely low sodium and

> > > > potassium. He also said he has *toxic*

> > > > levels of uranium,gadolinium, and antimony in his hair

> analysis

> > > that

> > > > he is going to want to *remove* down the road. My son sobbed

> > > > during the visit when told he'd have to do gfcf and sf. I am

> so

> > > > overwhelemed. I know we will not be able to stay on this

> > > > perpetually, so should I even bother? Should I just do the

> > > > supplements (efas, primrose oil, trytophan, p5p, digestive

> > > enzymes,

> > > > multi vitamin, zinc, lithium) and let him eat

> natural " healthy "

> > > > foods? I am already over $2000.00 out of pocket. He also

> said

> > > > that I should put my 4yr old, whom he has never seen, on GFCF

> &

> > > > sugar free because he is

> > > > apraxic! This Dan doc came highly recommended, but I am

> > starting

> > > > to wonder if they just prescribe GFCF for everyone no matter

> > what

> > > > the diagnosis. What do I do next? I am so overwhelmed by all

> > of

> > > > the research---enzymes, diet, supplements, meds, agghhh! I

> just

> > > > want to do the right thing for my son.

> > > >

> > > > Thanks for any and all input, and for reading this long post!

> > > >

> > > > ~ in PA

>

> Re: GFCF/SF/ yeast/DAN/ for ADHD & Apraxia?-HELP!

>

> as one like you that is all for " all natural " if possible -I

> have to agree with . If your going to be doing all that, and

> all that, that is unproven, and all that, that is unproven,

> expensive, complicated -and not working (!) then why not meds?

>

> And if one DAN doctor prescribes the exact same things for a child

> who is severe autistic to one who has no issues...why can't we know

> who this is? I know it's probably not the same DAN doctor

> but same story -and with the amount of stuff he's got your son on,

> off, doing,

> taking and blood testing for...jeez! Just let me know this -is this

> DAN doctor a medical doctor, not a medical doctor, a nutritionist?

> One blood test fits all or what?

>

> And this is not a DAN bashing -it's called a " bad doctor " bashing.

> If someone talks like a duck as they say (quack) Any doctor who

> sees a child going downhill with what they are doing should know

> when it's time to refer to someone else. To me referral is a sign

> of a good MD. And I'm sure some of of the good doctors are DAN

> doctors.

>

> We too would have gone the medication route for our ADHD son Dakota

> if fish oils didn't work. In this group for years I was so

> terrified to really let everyone know the dosages my kids were on

> because we all started on the same " one capsule " a day. I can tell

> you for a child your son's age however -one capsule of ProEFA -or

> even two for that matter just isn't going to cut it to make the

> difference. As you will see in the following messages we have

> Dakota on 5 capsules of ProEFA and 5 capsules of ProEPA every day.

> It's working amazing for him in that he's basically an A or high B

> student -solid A when he tries, very social with tons of friends

> and with a brilliant mind for architecture, imagination. He wants

> to own Disney when he grows up and design all the roller coasters.

>

> Dakota does not need any medications and I've told both my boys that

> even if they don't " need " the EFAs as they get older they should

> continue to take them for the rest of their lives because heart

> disease runs in both their mom and dad's family.

>

> If it were me I'd stop whatever you are able to stop without causing

> harm and just try the fish oils. That's all we needed to do. In

> fact Dakota's last neuroMD Dr. Sinha was so shocked by Dakota's

> change she asked for the formula and if she could give some of her

> other patients my number! But my favorite quote from her " There's

> no reason for me to see Dakota again he is doing that amazing.

> He'll probably make a great doctor. " (Dakota tests in the 99th

> percentile -he really is brilliant -can you tell he's my baby?!! :o)

>

> Here's the archives on this -let me know if you have other questions!

>

> From: " kiddietalk " <kiddietalk@...>

> Date: Sat May 28, 2005 11:49 pm

> Subject: Re: [ ], what kind of EFA are your

> kids taking? kiddietalk

>

> My boys probably consume more EFAs than what I posted even because

> we eat lots of seafood in our family. Dakota and Tanner both love

> sushi, and Tanner's favorite sandwich to order when we go out to

> dinner is a blackened dolphin (mahi mahi -the fish not the mammal-

> the local fish where we live)

>

> I find french fry, potato chip and doughnut oil scary -and because

> they don't sell it in capsules people don't think much about how

> much they consume a day. Tanner gets in reality less then a

> tablespoon a day of fish oil.

>

> If you check the archives -this may be the first time I've posted my

> boy's dosage because what works for my boys at 8 and 10 years old

> probably would be too high for those just starting. Highest amount

> is what Tanner is taking now for him. Any higher and he starts to

> regress in speech. He's taking what is the best dosage for him

> right now. After a few years you get to know what works best.

> Highest for humans? Read some of the stats below. I don't know if

> anyone has the highest dosage. Then again -too much water you drown.

> There's always such a thing as too much of a good thing.

>

> Side effects that are positive other than what everyone knows

> already -My children can be around someone with strept throat and

> don't get sick -I do credit that to the EFAs too. They are doing

> amazing in school and are very happy little boys. As I advise

> here -all was discussed with my boy's neuroMDs. In the archives in

> fact is the story of how pediatric neurologist Dr. Sinha asked me if

> she can write down the formula and dosage we are using with Dakota

> she was so amazed at the changes in him -she had thought he needed

> medication that much. And side effects for adults? In addition to

> what everyone knows like more focus, healthy, better recall and

> memory etc. it makes you sharper at everything -like even when you

> go to a casino party. (I won 15,000 dollars of play money tonight

> and came in second place out of a ton of people and never played

> craps before in my life -Glenn said now if I can just do that with

> real gambling and not just a party!)

>

> And about dosage...and as I said just yesterday. Dr. Stoll is the

> one that opened my eyes to higher dosages of EFAs. So speaking of

> Dr. Stoll -here are some quotes from his book that changed my

> opinion about what a " high " dosage is!

>

> 15 pages with references to Eskimos in this book:

>

> 1. on Page 43:

> " ... omega-6 to omega-3 ratios (approximately 1 to 1) are protected

> from many of the scourges of the modern age. Greenland Eskimos

> eating their traditional diet of fish, whale, and seal, for example,

> have extremely low rates of heart disease. Their blood ... "

> 2. on Page 50:

> " ... modern hunter- gatherer populations with diets closer to that

> of our evolutionary past. It was the classic study of Greenland

> Eskimos, conducted in the 1970s that drew attention to high

> concentrations of omega-3 fatty acids in their diets, ultimately

> linking the ... "

> 3. on Page 56:

> " ... plenty of omega-3 fatty acids. Today, similar quantities of

> omega-3 fatty acids are consumed by only a few groups, including

> Eskimos and inhabitants of Japanese fishing villages (see Table 3-

> 1). ... "

> 4. on Page 79:

> " ... great importance for public health, as diabetes is a huge cause

> of death and disability. Piqued by finding the Inuit Eskimos have

> surprisingly low rates of adult-onset diabetes, a team from

> Australia's Garvan Institute of Medical Research fed laboratory rats

> a ... "

> 5. on Page 83:

> " ... chapter 6.) Researchers first connected essential fatty acid

> imbalance to autoimmune disease in the 1970s, when they realized

> that Greenland Eskimos consuming diets high in omega-3 fatty acids

> rarely suffered from arthritis, asthma, or other disorders

> associated with excess inflammation. Since ... "

> 6. on Page 97:

> " ... the two urban populations, 0.68 percent for the rural region

> and 0.44 percent for the pastoral region. Studies of Inuit Eskimos

> as well as Malaysian, Dominican, and Nigerian women, all coastal

> populations , have shown similar results. Compare this to the ... "

> 7. on Page 102:

> " ... than 3.5 grains per day of EPA and DHA combined, have been

> given to pregnant women in research studies. Nevertheless, Eskimo

> women traditionally consume an average of 400 grams of seal and fish

> per day (slightly less than a pound). This ... "

> 8. on Page 209:

> " ... using EPA in dosages exceeding 8 grams per day, but higher

> levels seem to be safe, since the traditional Greenland Eskimo diet

> consisted of up to 14 grams per day. Anyone taking an anticlotting

> agent such as warfarin (Coumadin), or high ... "

> 9. from Back Matter:

> " ... Heart Trial, " The Lancet 1990;21;336:129-33. A. J. Parkinson et

> al., " Elevated concentrations of plasma w-3 polyunsaturated fatty

> acids among Alaskan Eskimos, " Am J Clin Nutr 1994;59:384-88. E. G.

> Perkins and W J. Visek, eds., Dietary Fats and Health (Champaign ,

> Ill.: ... "

> 10. from Back Matter:

> " ... domestic meats, " Int y Biochem 1970;1:295-305. J. Dyerberg and

> H. O. Bang, " Hemostatic function and platelet polyunsaturated fatty

> acids in Eskimos, " The Lancet 1979;2:433-35. S. B. Eaton and M. J.

> Konner, " Paleolithic nutrition revisited: a twelve- year

> retrospective on its nature ... "

>

> The Omega-3 Connection: The Groundbreaking Antidepression Diet and

> Brain Program

> by M.D., L. Stoll

>

> ~~~~~~~~~~~~~

>

> Anyway -sounds like you are on the right track

> Just keep going slow with increase and observe after each change.

>

> =====

>

Link to comment
Share on other sites

>

> To the newbies....DAN " doctors " are not necessarily medical

> doctors or a PhD - a social worker could be a DAN " doctor " And

> does 'anyone' including DAN doctors themselves ever really address

> the answer to this question when asked? Why call yourself a doctor

> when you are not a doctor? Especially when dealing with desperate

> parents of very young children? It's misleading at best -dangerous

> at worst...and is it right ethically or morally? Should it be

> illegal?

>

,

DAN! does not claim that its practitioners are all doctors. In

fact, they outright state just the opposite on their site, and

credentials of each person is listed. (I understand why you would

want to point this fact out to newbies, but the comments about

ethics and legality are a little over-the-top, don't you think?)

" Note that some health care practitioners listed below are not

physicians, and therefore are not able to provide some of the DAN!

diagnostic and treatment options. However, many of these

practitioners can and do provide helpful treatments and advice, and

may be able to suggest helpful local physicians who are not yet on

the DAN! list.

DISCLAIMER -- PLEASE READ

The following are practitioners who have requested to be listed as

providing DAN!-based interventions for helping autistic patients.

Most are physicians, others are licensed health-care professionals

in medically related fields.

We do not at present have any means of certifying the competence nor

quality of practice of any practitioner. We hope to be able to do so

in the future. "

DAN! calls their people " practitioners " ...it's the parents who just

shorten to " doctor " .

I for one think that it's helpful that there is a list of doctors

who may be willing to explore biomedical treatments for autism and

apraxia - even if you still need to do the research to find a good

doctor on the list. So few physicians are open to these ideas that

it's like finding a needle in a haystack to search for one with no

leads.

Imagine if EFAs were more controversial and only available by

prescription. Wouldn't you want to make a list of doctors who had

read the research about results and safety and had decided to

prescibe them for apraxia? I think that participating practitioner

lists are pretty common in the medical fields.

I do understand your concerns about DAN! (I've shared those concerns

and have not consulted a DAN! doctor myself) and I'm glad that

you're encouraging all to comment about their own experiences.

Oh, and BTW the death that the media rushed to blame on chelation

(which happened very close to where I live) was actually due to drug

error. Not that the media would cover THAT fact when it was

discovered. And the parents said that they would chelate again if

they had it all to do over again they had such amazing results. I

haven't done the research myself, but I've read that that was the

only death ever associated with chelation in the 50 plus years it's

been used. But not the first caused by drug error!

Kerri

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HI

I'm not Pro-DAN doctors or Anti-DAN doctors but I am big on accuracy of

reporting in the media. If folks want to see DAN doctors I just think

they need to do their own research so they can make informed decisions.

Part of that research needs to be not depending on the media outlets

for your medical information. The report about this child was greatly

skewed when it hit the newswires and became so sensationalized that it

hit all the news magazines.

It is my understanding that the DAN-related death that occurred was due

to an error in the application of the DAN protocol. This child didn't

die because he was being chelated. This child died from a medication

error. The nurse administered the wrong medication. It was a med that

was very similar in name and had an identical label. (Look alike/sound

alike medications are a big problem in healthcare but the FDA does

little to force companies to change their labeling). In this case the

child should have received Calcium Disodium EDTA. Instead he received

Disodium EDTA. They have identical labels and look alike when placed

side by side. So, the death occurred not because of a DAN protocol

treatment, it occurred due to a medication error and thousands of

people die each year in U.S. hospitals due to medication errors.

Dateline, etc didn't report that it was a medication error. They only

told their viewers that the child was getting a controversial treatment

and that hundreds of more children can die if this continues, etc. ABC

news did the same thing. If our media would maybe give as much

attention to those thousands of deaths in U.S. hospitals each year

maybe we'd have better protection for our nurses against mandatory

overtime, high patient loads etc that lead to decreased patient safety.

I guess such things aren't nearly as newsworthy.

Kris

On Oct 16, 2006, at 5:22 PM, kiddietalk wrote:

> Hi !

>

> Please everyone be open when you read this

> (I've had emails in private about this topic...so just my 2 cents)

>

> There are many schools of thought on some of the points you address

> as facts. Some do but most do not consider apraxia as on the autism

> spectrum. Many with autism may have apraxia or some other

> underlying speech impairment, but most with apraxia or other

> impairments of speech do not have autism. Some do and some don't

> consider DAN to have the " best and most current research by those in

> the field of autism " . (Actually 's research is probably the

> most amazing I've heard about ever....and she's a member of this

> group)

>

> Actually most don't (as Holly so eloquently points out) know what

> the " heck " a " DAN doctor " is. If there was best and current

> research to prove findings -you'd think pediatricians would at least

> know what DAN is -that it's not the name of a child you are asking

> about. To the newbies....DAN " doctors " are not necessarily medical

> doctors or a PhD - a social worker could be a DAN " doctor " And

> does 'anyone' including DAN doctors themselves ever really address

> the answer to this question when asked? Why call yourself a doctor

> when you are not a doctor? Especially when dealing with desperate

> parents of very young children? It's misleading at best -dangerous

> at worst...and is it right ethically or morally? Should it be

> illegal?

>

> My son Tanner's SLP Dr. Renai Jonas is listed as a DAN healthcare

> practitioner here

> http://www.autismlink.com/services_search.php?zipcode=33430 (at least

> Dr. Jonas has her doctorate) When I told

> Dr. Jonas that I didn't know she was a DAN doctor, she didn't know

> what I was talking about...so how are people added to this list of

> DAN Doctors? Is it just by going to conferences? I asked Dr. Jonas

> if she ever attended a DAN conference (I had heard that's how you

> become a DAN doctor) and she told me " I attend so many conferences I

> can't recall if I attended one of them, but probably "

>

> For those that emailed me in private -it 'is' OK to state here in

> public that DAN for your own child was a waste of time and money.

> It's OK for those like to say it cured her child of PDD, DSI

> and apraxia in about 2 years. We can all state our own findings and

> take away or leave any information we find important for our child.

> We don't all know each other or each other's children....but.....

> Perhaps one of the best and easiest ways to know if DAN works is to

> join a support group. That's how we learned the fish oils worked -

> and back then DAN's success rate was not worth the time and money to

> try it. But a cure in 2 years if that is really true and not just a

> misdiagnosis to begin with is worth exploring. Speaking of which,

> lets pray that the worst " side effect " of DAN that we ever read about

> here is that it's a waste of time and money, because in the media

> there has been at least one death.

>

> http://www.post-gazette.com/pg/05237/559756.stm

> http://www.kevinleitch.co.uk/wp/?p=317

> http://www.pittsburghlive.com/x/pittsburghtrib/s_367627.html

>

> (and some pretty harsh attacks here)

> http://photoninthedarkness.blogspot.com/2005/08/we-have-met-enemyand-

> he-is-us.html

>

> Below is an archive that shows why those that love the DAN approach,

> just like those that love ABA, need to demand more controls.

>

>

> > > >

> > > > Hello everyone,

> > > > It has been quite awhile since I have posted, but I have

> > > continued

> > > > to follow this incredible group with interest. A quick update:

> > My

> > > > youngest, CJ (apraxia, hypotonia, SID-dx 19 mo's), is now 4yrs

> > old

> > > > and has been completely exited from speech and OT! That is

> not

> > to

> > > > say we won't still have work ahead of us-he still requires a

> > > > tremendous amount of vestibular input, and has some minor

> > sensory

> > > > issues, but he is a chatterbox, and it is thanks in great

> part

> > to

> > > > me finding this site and working like crazy with him. Thank

> God

> > > for

> > > > EFa's and this group!

> > > >

> > > > Because the knowledge here never ceases to amaze me, I am

> > turning

> > > to

> > > > you all for advice & help. I am so overwhelmed! My oldest

> son,

> > > now

> > > > 8 1/2, has ADHD and Dyslexia. He is not on any prescribed

> meds

> > > > because we don't want to go that route. He has major trouble

> > > > sleeping (up for the day between 4am-6am, crashes by 7pm), is

> a

> > > > generally worrisome kid, and a glass half empty kind of kid

> > too!

> > > He

> > > > is not defiant, but gets so frustrated with his inability to

> > focus

> > > > on his schoolwork that he cries. He is perpetually in motion.

> > We

> > > > did Feingold for about a year & it helped, but it was

> incredibly

> > > > difficult outside of the home and I was the only one who

> wanted

> > to

> > > > continue it. It actually heightened his anxiety,becasue he was

> > > > always afraid to eat ANYTHING anywhere and was very sad about

> > it.

> > > I

> > > > still do not allow any food dies or artificial falvorings, but

> > do

> > > > allow organic fruits, veggies, whole grains, & dairy.

> > > > He is a sweet,kind,sensitive kid, and I am watching him become

> > > more

> > > > unhappy as time goes on because of his inability to focus on

> > > school

> > > > work. I took him to a DAN doc, who said he has a yeast

> > overgrowth

> > > > in his intestine from antibiotics (he has been on only 2x in

> his

> > > > entire life!), and I have to go GFCF, sugar free, and give him

> > > TONS

> > > > of supplements (over & $400.00 worth so far!) as well as treat

> > him

> > > > with Nyastatin once I have him GFCF and sugar free. He said

> he

> > > had

> > > > no Lithium in his hair analysis, which contributes to

> > depression,

> > > so

> > > > I need to supplement, and also had extremely low sodium and

> > > > potassium. He also said he has *toxic*

> > > > levels of uranium,gadolinium, and antimony in his hair

> analysis

> > > that

> > > > he is going to want to *remove* down the road. My son sobbed

> > > > during the visit when told he'd have to do gfcf and sf. I am

> so

> > > > overwhelemed. I know we will not be able to stay on this

> > > > perpetually, so should I even bother? Should I just do the

> > > > supplements (efas, primrose oil, trytophan, p5p, digestive

> > > enzymes,

> > > > multi vitamin, zinc, lithium) and let him eat

> natural " healthy "

> > > > foods? I am already over $2000.00 out of pocket. He also

> said

> > > > that I should put my 4yr old, whom he has never seen, on GFCF

> &

> > > > sugar free because he is

> > > > apraxic! This Dan doc came highly recommended, but I am

> > starting

> > > > to wonder if they just prescribe GFCF for everyone no matter

> > what

> > > > the diagnosis. What do I do next? I am so overwhelmed by all

> > of

> > > > the research---enzymes, diet, supplements, meds, agghhh! I

> just

> > > > want to do the right thing for my son.

> > > >

> > > > Thanks for any and all input, and for reading this long post!

> > > >

> > > > ~ in PA

>

> Re: GFCF/SF/ yeast/DAN/ for ADHD & Apraxia?-HELP!

>

> as one like you that is all for " all natural " if possible -I

> have to agree with . If your going to be doing all that, and

> all that, that is unproven, and all that, that is unproven,

> expensive, complicated -and not working (!) then why not meds?

>

> And if one DAN doctor prescribes the exact same things for a child

> who is severe autistic to one who has no issues...why can't we know

> who this is? I know it's probably not the same DAN doctor

> but same story -and with the amount of stuff he's got your son on,

> off, doing,

> taking and blood testing for...jeez! Just let me know this -is this

> DAN doctor a medical doctor, not a medical doctor, a nutritionist?

> One blood test fits all or what?

>

> And this is not a DAN bashing -it's called a " bad doctor " bashing.

> If someone talks like a duck as they say (quack) Any doctor who

> sees a child going downhill with what they are doing should know

> when it's time to refer to someone else. To me referral is a sign

> of a good MD. And I'm sure some of of the good doctors are DAN

> doctors.

>

> We too would have gone the medication route for our ADHD son Dakota

> if fish oils didn't work. In this group for years I was so

> terrified to really let everyone know the dosages my kids were on

> because we all started on the same " one capsule " a day. I can tell

> you for a child your son's age however -one capsule of ProEFA -or

> even two for that matter just isn't going to cut it to make the

> difference. As you will see in the following messages we have

> Dakota on 5 capsules of ProEFA and 5 capsules of ProEPA every day.

> It's working amazing for him in that he's basically an A or high B

> student -solid A when he tries, very social with tons of friends

> and with a brilliant mind for architecture, imagination. He wants

> to own Disney when he grows up and design all the roller coasters.

>

> Dakota does not need any medications and I've told both my boys that

> even if they don't " need " the EFAs as they get older they should

> continue to take them for the rest of their lives because heart

> disease runs in both their mom and dad's family.

>

> If it were me I'd stop whatever you are able to stop without causing

> harm and just try the fish oils. That's all we needed to do. In

> fact Dakota's last neuroMD Dr. Sinha was so shocked by Dakota's

> change she asked for the formula and if she could give some of her

> other patients my number! But my favorite quote from her " There's

> no reason for me to see Dakota again he is doing that amazing.

> He'll probably make a great doctor. " (Dakota tests in the 99th

> percentile -he really is brilliant -can you tell he's my baby?!! :o)

>

> Here's the archives on this -let me know if you have other questions!

>

> From: " kiddietalk " <kiddietalk@...>

> Date: Sat May 28, 2005 11:49 pm

> Subject: Re: [ ], what kind of EFA are your

> kids taking? kiddietalk

>

> My boys probably consume more EFAs than what I posted even because

> we eat lots of seafood in our family. Dakota and Tanner both love

> sushi, and Tanner's favorite sandwich to order when we go out to

> dinner is a blackened dolphin (mahi mahi -the fish not the mammal-

> the local fish where we live)

>

> I find french fry, potato chip and doughnut oil scary -and because

> they don't sell it in capsules people don't think much about how

> much they consume a day. Tanner gets in reality less then a

> tablespoon a day of fish oil.

>

> If you check the archives -this may be the first time I've posted my

> boy's dosage because what works for my boys at 8 and 10 years old

> probably would be too high for those just starting. Highest amount

> is what Tanner is taking now for him. Any higher and he starts to

> regress in speech. He's taking what is the best dosage for him

> right now. After a few years you get to know what works best.

> Highest for humans? Read some of the stats below. I don't know if

> anyone has the highest dosage. Then again -too much water you drown.

> There's always such a thing as too much of a good thing.

>

> Side effects that are positive other than what everyone knows

> already -My children can be around someone with strept throat and

> don't get sick -I do credit that to the EFAs too. They are doing

> amazing in school and are very happy little boys. As I advise

> here -all was discussed with my boy's neuroMDs. In the archives in

> fact is the story of how pediatric neurologist Dr. Sinha asked me if

> she can write down the formula and dosage we are using with Dakota

> she was so amazed at the changes in him -she had thought he needed

> medication that much. And side effects for adults? In addition to

> what everyone knows like more focus, healthy, better recall and

> memory etc. it makes you sharper at everything -like even when you

> go to a casino party. (I won 15,000 dollars of play money tonight

> and came in second place out of a ton of people and never played

> craps before in my life -Glenn said now if I can just do that with

> real gambling and not just a party!)

>

> And about dosage...and as I said just yesterday. Dr. Stoll is the

> one that opened my eyes to higher dosages of EFAs. So speaking of

> Dr. Stoll -here are some quotes from his book that changed my

> opinion about what a " high " dosage is!

>

> 15 pages with references to Eskimos in this book:

>

> 1. on Page 43:

> " ... omega-6 to omega-3 ratios (approximately 1 to 1) are protected

> from many of the scourges of the modern age. Greenland Eskimos

> eating their traditional diet of fish, whale, and seal, for example,

> have extremely low rates of heart disease. Their blood ... "

> 2. on Page 50:

> " ... modern hunter- gatherer populations with diets closer to that

> of our evolutionary past. It was the classic study of Greenland

> Eskimos, conducted in the 1970s that drew attention to high

> concentrations of omega-3 fatty acids in their diets, ultimately

> linking the ... "

> 3. on Page 56:

> " ... plenty of omega-3 fatty acids. Today, similar quantities of

> omega-3 fatty acids are consumed by only a few groups, including

> Eskimos and inhabitants of Japanese fishing villages (see Table 3-

> 1). ... "

> 4. on Page 79:

> " ... great importance for public health, as diabetes is a huge cause

> of death and disability. Piqued by finding the Inuit Eskimos have

> surprisingly low rates of adult-onset diabetes, a team from

> Australia's Garvan Institute of Medical Research fed laboratory rats

> a ... "

> 5. on Page 83:

> " ... chapter 6.) Researchers first connected essential fatty acid

> imbalance to autoimmune disease in the 1970s, when they realized

> that Greenland Eskimos consuming diets high in omega-3 fatty acids

> rarely suffered from arthritis, asthma, or other disorders

> associated with excess inflammation. Since ... "

> 6. on Page 97:

> " ... the two urban populations, 0.68 percent for the rural region

> and 0.44 percent for the pastoral region. Studies of Inuit Eskimos

> as well as Malaysian, Dominican, and Nigerian women, all coastal

> populations , have shown similar results. Compare this to the ... "

> 7. on Page 102:

> " ... than 3.5 grains per day of EPA and DHA combined, have been

> given to pregnant women in research studies. Nevertheless, Eskimo

> women traditionally consume an average of 400 grams of seal and fish

> per day (slightly less than a pound). This ... "

> 8. on Page 209:

> " ... using EPA in dosages exceeding 8 grams per day, but higher

> levels seem to be safe, since the traditional Greenland Eskimo diet

> consisted of up to 14 grams per day. Anyone taking an anticlotting

> agent such as warfarin (Coumadin), or high ... "

> 9. from Back Matter:

> " ... Heart Trial, " The Lancet 1990;21;336:129-33. A. J. Parkinson et

> al., " Elevated concentrations of plasma w-3 polyunsaturated fatty

> acids among Alaskan Eskimos, " Am J Clin Nutr 1994;59:384-88. E. G.

> Perkins and W J. Visek, eds., Dietary Fats and Health (Champaign ,

> Ill.: ... "

> 10. from Back Matter:

> " ... domestic meats, " Int y Biochem 1970;1:295-305. J. Dyerberg and

> H. O. Bang, " Hemostatic function and platelet polyunsaturated fatty

> acids in Eskimos, " The Lancet 1979;2:433-35. S. B. Eaton and M. J.

> Konner, " Paleolithic nutrition revisited: a twelve- year

> retrospective on its nature ... "

>

> The Omega-3 Connection: The Groundbreaking Antidepression Diet and

> Brain Program

> by M.D., L. Stoll

>

> ~~~~~~~~~~~~~

>

> Anyway -sounds like you are on the right track

> Just keep going slow with increase and observe after each change.

>

> =====

>

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" Instead of epidemics of measles and polio, we have epidemics of chronic

autoimmune and neurological disease: In the last 20 years rates of

asthma and attention-deficit disorder have doubled, diabetes and

learning disabilities have tripled, chronic arthritis now affects nearly

one in five Americans and autism has increased by 300 percent or more in

many states. " ----Barbara Loe Fisher <http://whale.to/m/fisher8.html>

I recently attended part of a DAN conference and I was very impressed

with nearly every speaker I heard. One speaker, from Thoughtful House

was a little less impressive because he mentioned Miralax as an

appropriate drug and my research and experience is that it not an inert

substance as it is advertised. Otherwise I found all of the

presentations to be backed by tests and accurate science. Usually the

tests were not double blind -- difficult to get parents to remove a

therapy that is working. -- which leads some to say that therapies have

not been tested, which is not accurate. I am a sceptic and I was won

over.

All you have to do is look at the statics - something is going on that

can't be overlooked.

> > > > >

> > > > > Hello everyone,

> > > > > It has been quite awhile since I have posted, but I have

> > > > continued

> > > > > to follow this incredible group with interest. A quick update:

> > > My

> > > > > youngest, CJ (apraxia, hypotonia, SID-dx 19 mo's), is now 4yrs

> > > old

> > > > > and has been completely exited from speech and OT! That is

> > not

> > > to

> > > > > say we won't still have work ahead of us-he still requires a

> > > > > tremendous amount of vestibular input, and has some minor

> > > sensory

> > > > > issues, but he is a chatterbox, and it is thanks in great

> > part

> > > to

> > > > > me finding this site and working like crazy with him. Thank

> > God

> > > > for

> > > > > EFa's and this group!

> > > > >

> > > > > Because the knowledge here never ceases to amaze me, I am

> > > turning

> > > > to

> > > > > you all for advice & help. I am so overwhelmed! My oldest

> > son,

> > > > now

> > > > > 8 1/2, has ADHD and Dyslexia. He is not on any prescribed

> > meds

> > > > > because we don't want to go that route. He has major trouble

> > > > > sleeping (up for the day between 4am-6am, crashes by 7pm), is

> > a

> > > > > generally worrisome kid, and a glass half empty kind of kid

> > > too!

> > > > He

> > > > > is not defiant, but gets so frustrated with his inability to

> > > focus

> > > > > on his schoolwork that he cries. He is perpetually in motion.

> > > We

> > > > > did Feingold for about a year & it helped, but it was

> > incredibly

> > > > > difficult outside of the home and I was the only one who

> > wanted

> > > to

> > > > > continue it. It actually heightened his anxiety,becasue he was

> > > > > always afraid to eat ANYTHING anywhere and was very sad about

> > > it.

> > > > I

> > > > > still do not allow any food dies or artificial falvorings, but

> > > do

> > > > > allow organic fruits, veggies, whole grains, & dairy.

> > > > > He is a sweet,kind,sensitive kid, and I am watching him become

> > > > more

> > > > > unhappy as time goes on because of his inability to focus on

> > > > school

> > > > > work. I took him to a DAN doc, who said he has a yeast

> > > overgrowth

> > > > > in his intestine from antibiotics (he has been on only 2x in

> > his

> > > > > entire life!), and I have to go GFCF, sugar free, and give him

> > > > TONS

> > > > > of supplements (over & $400.00 worth so far!) as well as treat

> > > him

> > > > > with Nyastatin once I have him GFCF and sugar free. He said

> > he

> > > > had

> > > > > no Lithium in his hair analysis, which contributes to

> > > depression,

> > > > so

> > > > > I need to supplement, and also had extremely low sodium and

> > > > > potassium. He also said he has *toxic*

> > > > > levels of uranium,gadolinium, and antimony in his hair

> > analysis

> > > > that

> > > > > he is going to want to *remove* down the road. My son sobbed

> > > > > during the visit when told he'd have to do gfcf and sf. I am

> > so

> > > > > overwhelemed. I know we will not be able to stay on this

> > > > > perpetually, so should I even bother? Should I just do the

> > > > > supplements (efas, primrose oil, trytophan, p5p, digestive

> > > > enzymes,

> > > > > multi vitamin, zinc, lithium) and let him eat

> > natural " healthy "

> > > > > foods? I am already over $2000.00 out of pocket. He also

> > said

> > > > > that I should put my 4yr old, whom he has never seen, on GFCF

> > &

> > > > > sugar free because he is

> > > > > apraxic! This Dan doc came highly recommended, but I am

> > > starting

> > > > > to wonder if they just prescribe GFCF for everyone no matter

> > > what

> > > > > the diagnosis. What do I do next? I am so overwhelmed by all

> > > of

> > > > > the research---enzymes, diet, supplements, meds, agghhh! I

> > just

> > > > > want to do the right thing for my son.

> > > > >

> > > > > Thanks for any and all input, and for reading this long post!

> > > > >

> > > > > ~ in PA

> >

> > Re: GFCF/SF/ yeast/DAN/ for ADHD & Apraxia?-HELP!

> >

> >

> > as one like you that is all for " all natural " if possible -I

> > have to agree with . If your going to be doing all that, and

> > all that, that is unproven, and all that, that is unproven,

> > expensive, complicated -and not working (!) then why not meds?

> >

> > And if one DAN doctor prescribes the exact same things for a child

> > who is severe autistic to one who has no issues...why can't we know

> > who this is? I know it's probably not the same DAN doctor

> > but same story -and with the amount of stuff he's got your son on,

> > off, doing,

> > taking and blood testing for...jeez! Just let me know this -is this

> > DAN doctor a medical doctor, not a medical doctor, a nutritionist?

> > One blood test fits all or what?

> >

> > And this is not a DAN bashing -it's called a " bad doctor " bashing.

> > If someone talks like a duck as they say (quack) Any doctor who

> > sees a child going downhill with what they are doing should know

> > when it's time to refer to someone else. To me referral is a sign

> > of a good MD. And I'm sure some of of the good doctors are DAN

> > doctors.

> >

> > We too would have gone the medication route for our ADHD son Dakota

> > if fish oils didn't work. In this group for years I was so

> > terrified to really let everyone know the dosages my kids were on

> > because we all started on the same " one capsule " a day. I can tell

> > you for a child your son's age however -one capsule of ProEFA -or

> > even two for that matter just isn't going to cut it to make the

> > difference. As you will see in the following messages we have

> > Dakota on 5 capsules of ProEFA and 5 capsules of ProEPA every day.

> > It's working amazing for him in that he's basically an A or high B

> > student -solid A when he tries, very social with tons of friends

> > and with a brilliant mind for architecture, imagination. He wants

> > to own Disney when he grows up and design all the roller coasters.

> >

> > Dakota does not need any medications and I've told both my boys that

> > even if they don't " need " the EFAs as they get older they should

> > continue to take them for the rest of their lives because heart

> > disease runs in both their mom and dad's family.

> >

> > If it were me I'd stop whatever you are able to stop without causing

> > harm and just try the fish oils. That's all we needed to do. In

> > fact Dakota's last neuroMD Dr. Sinha was so shocked by Dakota's

> > change she asked for the formula and if she could give some of her

> > other patients my number! But my favorite quote from her " There's

> > no reason for me to see Dakota again he is doing that amazing.

> > He'll probably make a great doctor. " (Dakota tests in the 99th

> > percentile -he really is brilliant -can you tell he's my baby?!! :o)

> >

> > Here's the archives on this -let me know if you have other

questions!

> >

> >

> > From: " kiddietalk " kiddietalk@

> > Date: Sat May 28, 2005 11:49 pm

> > Subject: Re: [ ], what kind of EFA are your

> > kids taking? kiddietalk

> >

> > My boys probably consume more EFAs than what I posted even because

> > we eat lots of seafood in our family. Dakota and Tanner both love

> > sushi, and Tanner's favorite sandwich to order when we go out to

> > dinner is a blackened dolphin (mahi mahi -the fish not the mammal-

> > the local fish where we live)

> >

> > I find french fry, potato chip and doughnut oil scary -and because

> > they don't sell it in capsules people don't think much about how

> > much they consume a day. Tanner gets in reality less then a

> > tablespoon a day of fish oil.

> >

> > If you check the archives -this may be the first time I've posted my

> > boy's dosage because what works for my boys at 8 and 10 years old

> > probably would be too high for those just starting. Highest amount

> > is what Tanner is taking now for him. Any higher and he starts to

> > regress in speech. He's taking what is the best dosage for him

> > right now. After a few years you get to know what works best.

> > Highest for humans? Read some of the stats below. I don't know if

> > anyone has the highest dosage. Then again -too much water you drown.

> > There's always such a thing as too much of a good thing.

> >

> > Side effects that are positive other than what everyone knows

> > already -My children can be around someone with strept throat and

> > don't get sick -I do credit that to the EFAs too. They are doing

> > amazing in school and are very happy little boys. As I advise

> > here -all was discussed with my boy's neuroMDs. In the archives in

> > fact is the story of how pediatric neurologist Dr. Sinha asked me if

> > she can write down the formula and dosage we are using with Dakota

> > she was so amazed at the changes in him -she had thought he needed

> > medication that much. And side effects for adults? In addition to

> > what everyone knows like more focus, healthy, better recall and

> > memory etc. it makes you sharper at everything -like even when you

> > go to a casino party. (I won 15,000 dollars of play money tonight

> > and came in second place out of a ton of people and never played

> > craps before in my life -Glenn said now if I can just do that with

> > real gambling and not just a party!)

> >

> > And about dosage...and as I said just yesterday. Dr. Stoll is the

> > one that opened my eyes to higher dosages of EFAs. So speaking of

> > Dr. Stoll -here are some quotes from his book that changed my

> > opinion about what a " high " dosage is!

> >

> > 15 pages with references to Eskimos in this book:

> >

> > 1. on Page 43:

> > " ... omega-6 to omega-3 ratios (approximately 1 to 1) are protected

> > from many of the scourges of the modern age. Greenland Eskimos

> > eating their traditional diet of fish, whale, and seal, for example,

> > have extremely low rates of heart disease. Their blood ... "

> > 2. on Page 50:

> > " ... modern hunter- gatherer populations with diets closer to that

> > of our evolutionary past. It was the classic study of Greenland

> > Eskimos, conducted in the 1970s that drew attention to high

> > concentrations of omega-3 fatty acids in their diets, ultimately

> > linking the ... "

> > 3. on Page 56:

> > " ... plenty of omega-3 fatty acids. Today, similar quantities of

> > omega-3 fatty acids are consumed by only a few groups, including

> > Eskimos and inhabitants of Japanese fishing villages (see Table 3-

> > 1). ... "

> > 4. on Page 79:

> > " ... great importance for public health, as diabetes is a huge cause

> > of death and disability. Piqued by finding the Inuit Eskimos have

> > surprisingly low rates of adult-onset diabetes, a team from

> > Australia's Garvan Institute of Medical Research fed laboratory rats

> > a ... "

> > 5. on Page 83:

> > " ... chapter 6.) Researchers first connected essential fatty acid

> > imbalance to autoimmune disease in the 1970s, when they realized

> > that Greenland Eskimos consuming diets high in omega-3 fatty acids

> > rarely suffered from arthritis, asthma, or other disorders

> > associated with excess inflammation. Since ... "

> > 6. on Page 97:

> > " ... the two urban populations, 0.68 percent for the rural region

> > and 0.44 percent for the pastoral region. Studies of Inuit Eskimos

> > as well as Malaysian, Dominican, and Nigerian women, all coastal

> > populations , have shown similar results. Compare this to the ... "

> > 7. on Page 102:

> > " ... than 3.5 grains per day of EPA and DHA combined, have been

> > given to pregnant women in research studies. Nevertheless, Eskimo

> > women traditionally consume an average of 400 grams of seal and fish

> > per day (slightly less than a pound). This ... "

> > 8. on Page 209:

> > " ... using EPA in dosages exceeding 8 grams per day, but higher

> > levels seem to be safe, since the traditional Greenland Eskimo diet

> > consisted of up to 14 grams per day. Anyone taking an anticlotting

> > agent such as warfarin (Coumadin), or high ... "

> > 9. from Back Matter:

> > " ... Heart Trial, " The Lancet 1990;21;336:129-33. A. J. Parkinson et

> > al., " Elevated concentrations of plasma w-3 polyunsaturated fatty

> > acids among Alaskan Eskimos, " Am J Clin Nutr 1994;59:384-88. E. G.

> > Perkins and W J. Visek, eds., Dietary Fats and Health (Champaign ,

> > Ill.: ... "

> > 10. from Back Matter:

> > " ... domestic meats, " Int y Biochem 1970;1:295-305. J. Dyerberg and

> > H. O. Bang, " Hemostatic function and platelet polyunsaturated fatty

> > acids in Eskimos, " The Lancet 1979;2:433-35. S. B. Eaton and M. J.

> > Konner, " Paleolithic nutrition revisited: a twelve- year

> > retrospective on its nature ... "

> >

> > The Omega-3 Connection: The Groundbreaking Antidepression Diet and

> > Brain Program

> > by M.D., L. Stoll

> >

> > ~~~~~~~~~~~~~

> >

> > Anyway -sounds like you are on the right track

> > Just keep going slow with increase and observe after each change.

> >

> > =====

> >

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>

> To the newbies....DAN " doctors " are not necessarily medical

> doctors or a PhD - a social worker could be a DAN " doctor " And

> does 'anyone' including DAN doctors themselves ever really address

> the answer to this question when asked? Why call yourself a doctor

> when you are not a doctor? Especially when dealing with desperate

> parents of very young children? It's misleading at best -dangerous

> at worst...and is it right ethically or morally? Should it be

> illegal?

>

,

DAN! does not claim that its practitioners are all doctors. In

fact, they outright state just the opposite on their site, and

credentials of each person is listed. (I understand why you would

want to point this fact out to newbies, but the comments about

ethics and legality are a little over-the-top, don't you think?)

" Note that some health care practitioners listed below are not

physicians, and therefore are not able to provide some of the DAN!

diagnostic and treatment options. However, many of these

practitioners can and do provide helpful treatments and advice, and

may be able to suggest helpful local physicians who are not yet on

the DAN! list.

DISCLAIMER -- PLEASE READ

The following are practitioners who have requested to be listed as

providing DAN!-based interventions for helping autistic patients.

Most are physicians, others are licensed health-care professionals

in medically related fields.

We do not at present have any means of certifying the competence nor

quality of practice of any practitioner. We hope to be able to do so

in the future. "

DAN! calls their people " practitioners " ...it's the parents who just

shorten to " doctor " .

I for one think that it's helpful that there is a list of doctors

who may be willing to explore biomedical treatments for autism and

apraxia - even if you still need to do the research to find a good

doctor on the list. So few physicians are open to these ideas that

it's like finding a needle in a haystack to search for one with no

leads.

Imagine if EFAs were more controversial and only available by

prescription. Wouldn't you want to make a list of doctors who had

read the research about results and safety and had decided to

prescibe them for apraxia? I think that participating practitioner

lists are pretty common in the medical fields.

I do understand your concerns about DAN! (I've shared those concerns

and have not consulted a DAN! doctor myself) and I'm glad that

you're encouraging all to comment about their own experiences.

Oh, and BTW the death that the media rushed to blame on chelation

(which happened very close to where I live) was actually due to drug

error. Not that the media would cover THAT fact when it was

discovered. And the parents said that they would chelate again if

they had it all to do over again they had such amazing results. I

haven't done the research myself, but I've read that that was the

only death ever associated with chelation in the 50 plus years it's

been used. But not the first caused by drug error!

Kerri

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" Instead of epidemics of measles and polio, we have epidemics of chronic

autoimmune and neurological disease: In the last 20 years rates of

asthma and attention-deficit disorder have doubled, diabetes and

learning disabilities have tripled, chronic arthritis now affects nearly

one in five Americans and autism has increased by 300 percent or more in

many states. " ----Barbara Loe Fisher <http://whale.to/m/fisher8.html>

I recently attended part of a DAN conference and I was very impressed

with nearly every speaker I heard. One speaker, from Thoughtful House

was a little less impressive because he mentioned Miralax as an

appropriate drug and my research and experience is that it not an inert

substance as it is advertised. Otherwise I found all of the

presentations to be backed by tests and accurate science. Usually the

tests were not double blind -- difficult to get parents to remove a

therapy that is working. -- which leads some to say that therapies have

not been tested, which is not accurate. I am a sceptic and I was won

over.

All you have to do is look at the statics - something is going on that

can't be overlooked.

> > > > >

> > > > > Hello everyone,

> > > > > It has been quite awhile since I have posted, but I have

> > > > continued

> > > > > to follow this incredible group with interest. A quick update:

> > > My

> > > > > youngest, CJ (apraxia, hypotonia, SID-dx 19 mo's), is now 4yrs

> > > old

> > > > > and has been completely exited from speech and OT! That is

> > not

> > > to

> > > > > say we won't still have work ahead of us-he still requires a

> > > > > tremendous amount of vestibular input, and has some minor

> > > sensory

> > > > > issues, but he is a chatterbox, and it is thanks in great

> > part

> > > to

> > > > > me finding this site and working like crazy with him. Thank

> > God

> > > > for

> > > > > EFa's and this group!

> > > > >

> > > > > Because the knowledge here never ceases to amaze me, I am

> > > turning

> > > > to

> > > > > you all for advice & help. I am so overwhelmed! My oldest

> > son,

> > > > now

> > > > > 8 1/2, has ADHD and Dyslexia. He is not on any prescribed

> > meds

> > > > > because we don't want to go that route. He has major trouble

> > > > > sleeping (up for the day between 4am-6am, crashes by 7pm), is

> > a

> > > > > generally worrisome kid, and a glass half empty kind of kid

> > > too!

> > > > He

> > > > > is not defiant, but gets so frustrated with his inability to

> > > focus

> > > > > on his schoolwork that he cries. He is perpetually in motion.

> > > We

> > > > > did Feingold for about a year & it helped, but it was

> > incredibly

> > > > > difficult outside of the home and I was the only one who

> > wanted

> > > to

> > > > > continue it. It actually heightened his anxiety,becasue he was

> > > > > always afraid to eat ANYTHING anywhere and was very sad about

> > > it.

> > > > I

> > > > > still do not allow any food dies or artificial falvorings, but

> > > do

> > > > > allow organic fruits, veggies, whole grains, & dairy.

> > > > > He is a sweet,kind,sensitive kid, and I am watching him become

> > > > more

> > > > > unhappy as time goes on because of his inability to focus on

> > > > school

> > > > > work. I took him to a DAN doc, who said he has a yeast

> > > overgrowth

> > > > > in his intestine from antibiotics (he has been on only 2x in

> > his

> > > > > entire life!), and I have to go GFCF, sugar free, and give him

> > > > TONS

> > > > > of supplements (over & $400.00 worth so far!) as well as treat

> > > him

> > > > > with Nyastatin once I have him GFCF and sugar free. He said

> > he

> > > > had

> > > > > no Lithium in his hair analysis, which contributes to

> > > depression,

> > > > so

> > > > > I need to supplement, and also had extremely low sodium and

> > > > > potassium. He also said he has *toxic*

> > > > > levels of uranium,gadolinium, and antimony in his hair

> > analysis

> > > > that

> > > > > he is going to want to *remove* down the road. My son sobbed

> > > > > during the visit when told he'd have to do gfcf and sf. I am

> > so

> > > > > overwhelemed. I know we will not be able to stay on this

> > > > > perpetually, so should I even bother? Should I just do the

> > > > > supplements (efas, primrose oil, trytophan, p5p, digestive

> > > > enzymes,

> > > > > multi vitamin, zinc, lithium) and let him eat

> > natural " healthy "

> > > > > foods? I am already over $2000.00 out of pocket. He also

> > said

> > > > > that I should put my 4yr old, whom he has never seen, on GFCF

> > &

> > > > > sugar free because he is

> > > > > apraxic! This Dan doc came highly recommended, but I am

> > > starting

> > > > > to wonder if they just prescribe GFCF for everyone no matter

> > > what

> > > > > the diagnosis. What do I do next? I am so overwhelmed by all

> > > of

> > > > > the research---enzymes, diet, supplements, meds, agghhh! I

> > just

> > > > > want to do the right thing for my son.

> > > > >

> > > > > Thanks for any and all input, and for reading this long post!

> > > > >

> > > > > ~ in PA

> >

> > Re: GFCF/SF/ yeast/DAN/ for ADHD & Apraxia?-HELP!

> >

> >

> > as one like you that is all for " all natural " if possible -I

> > have to agree with . If your going to be doing all that, and

> > all that, that is unproven, and all that, that is unproven,

> > expensive, complicated -and not working (!) then why not meds?

> >

> > And if one DAN doctor prescribes the exact same things for a child

> > who is severe autistic to one who has no issues...why can't we know

> > who this is? I know it's probably not the same DAN doctor

> > but same story -and with the amount of stuff he's got your son on,

> > off, doing,

> > taking and blood testing for...jeez! Just let me know this -is this

> > DAN doctor a medical doctor, not a medical doctor, a nutritionist?

> > One blood test fits all or what?

> >

> > And this is not a DAN bashing -it's called a " bad doctor " bashing.

> > If someone talks like a duck as they say (quack) Any doctor who

> > sees a child going downhill with what they are doing should know

> > when it's time to refer to someone else. To me referral is a sign

> > of a good MD. And I'm sure some of of the good doctors are DAN

> > doctors.

> >

> > We too would have gone the medication route for our ADHD son Dakota

> > if fish oils didn't work. In this group for years I was so

> > terrified to really let everyone know the dosages my kids were on

> > because we all started on the same " one capsule " a day. I can tell

> > you for a child your son's age however -one capsule of ProEFA -or

> > even two for that matter just isn't going to cut it to make the

> > difference. As you will see in the following messages we have

> > Dakota on 5 capsules of ProEFA and 5 capsules of ProEPA every day.

> > It's working amazing for him in that he's basically an A or high B

> > student -solid A when he tries, very social with tons of friends

> > and with a brilliant mind for architecture, imagination. He wants

> > to own Disney when he grows up and design all the roller coasters.

> >

> > Dakota does not need any medications and I've told both my boys that

> > even if they don't " need " the EFAs as they get older they should

> > continue to take them for the rest of their lives because heart

> > disease runs in both their mom and dad's family.

> >

> > If it were me I'd stop whatever you are able to stop without causing

> > harm and just try the fish oils. That's all we needed to do. In

> > fact Dakota's last neuroMD Dr. Sinha was so shocked by Dakota's

> > change she asked for the formula and if she could give some of her

> > other patients my number! But my favorite quote from her " There's

> > no reason for me to see Dakota again he is doing that amazing.

> > He'll probably make a great doctor. " (Dakota tests in the 99th

> > percentile -he really is brilliant -can you tell he's my baby?!! :o)

> >

> > Here's the archives on this -let me know if you have other

questions!

> >

> >

> > From: " kiddietalk " kiddietalk@

> > Date: Sat May 28, 2005 11:49 pm

> > Subject: Re: [ ], what kind of EFA are your

> > kids taking? kiddietalk

> >

> > My boys probably consume more EFAs than what I posted even because

> > we eat lots of seafood in our family. Dakota and Tanner both love

> > sushi, and Tanner's favorite sandwich to order when we go out to

> > dinner is a blackened dolphin (mahi mahi -the fish not the mammal-

> > the local fish where we live)

> >

> > I find french fry, potato chip and doughnut oil scary -and because

> > they don't sell it in capsules people don't think much about how

> > much they consume a day. Tanner gets in reality less then a

> > tablespoon a day of fish oil.

> >

> > If you check the archives -this may be the first time I've posted my

> > boy's dosage because what works for my boys at 8 and 10 years old

> > probably would be too high for those just starting. Highest amount

> > is what Tanner is taking now for him. Any higher and he starts to

> > regress in speech. He's taking what is the best dosage for him

> > right now. After a few years you get to know what works best.

> > Highest for humans? Read some of the stats below. I don't know if

> > anyone has the highest dosage. Then again -too much water you drown.

> > There's always such a thing as too much of a good thing.

> >

> > Side effects that are positive other than what everyone knows

> > already -My children can be around someone with strept throat and

> > don't get sick -I do credit that to the EFAs too. They are doing

> > amazing in school and are very happy little boys. As I advise

> > here -all was discussed with my boy's neuroMDs. In the archives in

> > fact is the story of how pediatric neurologist Dr. Sinha asked me if

> > she can write down the formula and dosage we are using with Dakota

> > she was so amazed at the changes in him -she had thought he needed

> > medication that much. And side effects for adults? In addition to

> > what everyone knows like more focus, healthy, better recall and

> > memory etc. it makes you sharper at everything -like even when you

> > go to a casino party. (I won 15,000 dollars of play money tonight

> > and came in second place out of a ton of people and never played

> > craps before in my life -Glenn said now if I can just do that with

> > real gambling and not just a party!)

> >

> > And about dosage...and as I said just yesterday. Dr. Stoll is the

> > one that opened my eyes to higher dosages of EFAs. So speaking of

> > Dr. Stoll -here are some quotes from his book that changed my

> > opinion about what a " high " dosage is!

> >

> > 15 pages with references to Eskimos in this book:

> >

> > 1. on Page 43:

> > " ... omega-6 to omega-3 ratios (approximately 1 to 1) are protected

> > from many of the scourges of the modern age. Greenland Eskimos

> > eating their traditional diet of fish, whale, and seal, for example,

> > have extremely low rates of heart disease. Their blood ... "

> > 2. on Page 50:

> > " ... modern hunter- gatherer populations with diets closer to that

> > of our evolutionary past. It was the classic study of Greenland

> > Eskimos, conducted in the 1970s that drew attention to high

> > concentrations of omega-3 fatty acids in their diets, ultimately

> > linking the ... "

> > 3. on Page 56:

> > " ... plenty of omega-3 fatty acids. Today, similar quantities of

> > omega-3 fatty acids are consumed by only a few groups, including

> > Eskimos and inhabitants of Japanese fishing villages (see Table 3-

> > 1). ... "

> > 4. on Page 79:

> > " ... great importance for public health, as diabetes is a huge cause

> > of death and disability. Piqued by finding the Inuit Eskimos have

> > surprisingly low rates of adult-onset diabetes, a team from

> > Australia's Garvan Institute of Medical Research fed laboratory rats

> > a ... "

> > 5. on Page 83:

> > " ... chapter 6.) Researchers first connected essential fatty acid

> > imbalance to autoimmune disease in the 1970s, when they realized

> > that Greenland Eskimos consuming diets high in omega-3 fatty acids

> > rarely suffered from arthritis, asthma, or other disorders

> > associated with excess inflammation. Since ... "

> > 6. on Page 97:

> > " ... the two urban populations, 0.68 percent for the rural region

> > and 0.44 percent for the pastoral region. Studies of Inuit Eskimos

> > as well as Malaysian, Dominican, and Nigerian women, all coastal

> > populations , have shown similar results. Compare this to the ... "

> > 7. on Page 102:

> > " ... than 3.5 grains per day of EPA and DHA combined, have been

> > given to pregnant women in research studies. Nevertheless, Eskimo

> > women traditionally consume an average of 400 grams of seal and fish

> > per day (slightly less than a pound). This ... "

> > 8. on Page 209:

> > " ... using EPA in dosages exceeding 8 grams per day, but higher

> > levels seem to be safe, since the traditional Greenland Eskimo diet

> > consisted of up to 14 grams per day. Anyone taking an anticlotting

> > agent such as warfarin (Coumadin), or high ... "

> > 9. from Back Matter:

> > " ... Heart Trial, " The Lancet 1990;21;336:129-33. A. J. Parkinson et

> > al., " Elevated concentrations of plasma w-3 polyunsaturated fatty

> > acids among Alaskan Eskimos, " Am J Clin Nutr 1994;59:384-88. E. G.

> > Perkins and W J. Visek, eds., Dietary Fats and Health (Champaign ,

> > Ill.: ... "

> > 10. from Back Matter:

> > " ... domestic meats, " Int y Biochem 1970;1:295-305. J. Dyerberg and

> > H. O. Bang, " Hemostatic function and platelet polyunsaturated fatty

> > acids in Eskimos, " The Lancet 1979;2:433-35. S. B. Eaton and M. J.

> > Konner, " Paleolithic nutrition revisited: a twelve- year

> > retrospective on its nature ... "

> >

> > The Omega-3 Connection: The Groundbreaking Antidepression Diet and

> > Brain Program

> > by M.D., L. Stoll

> >

> > ~~~~~~~~~~~~~

> >

> > Anyway -sounds like you are on the right track

> > Just keep going slow with increase and observe after each change.

> >

> > =====

> >

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