Re: Does anyone recommend going to a DAN doctor?

[Guest guest]

In a message dated 4/22/03 12:40:49 PM Eastern Daylight Time,

kjorn@... writes:

> I wouldn't get really hung up on the label of Dan because there is

> no training or screening. Someone shows up at ONE conference and

> gets their name on the list. Most people have very bad experiences

> and lose tons of money. A small minority are satisfied. Dan has

> certain business objectives that some people are more interested in

> than helping you with your child.

>

I agree with this completely. We were with a Dan! doctor for almost

five years and spent thousands of dollars. In retrospect, I see that he just

suggested every new thing that came around, with no regard to my son's

individual situation. The real help came from this list and Andy Cutler on

the group.

[Guest guest]

> I, however, am starting to get a little nervous that I am just

grasping at straws and may not

> be doing the right things.

We took our 3 year old to a DAN doctor for 4 months, spent about

$1000 and all the doctor did was recommend their favorite " cures " ,

none of which helped our son. Also kept stalling on chelation which

is what I think will help my son(we finally have begun on our own).

I think most parents can read about various treatments, guess which

ones to try, and have the same success rate as most DAN doctors. I

think for the parents who told me great things about the doctor we

used, that the doctor guessed the right treatments for their child.

The only thing I miss from not having a doctor is the ability to run

some of the tests I would like (plasma cysteine, amino acids, etc.)

I also live in NJ - you can email me privately if you want to know

the doctor we used - the doctor is well know and in the " DAN in

crowd " .

Hope that helps

Carole

[Guest guest]

Hi ,

I totally know where you're coming from. Before we left Chicago a

month ago, our son was dx'd ASD. We had a series of blood and urine

work completed, and I have 15 pages of results to prove it. Our

Chicago pediatrician could only take us so far, and now we've moved

to County, NJ.

I've decided to see a DAN! doctor if only to gain some hopefully

clearer understanding about what these tests even are, let alone what

the results mean, and to see if she recommends any further tests that

I'm researching from this site and others. Since I'm new to the

area, I didn't even know what doctor was near me. I ended up on the

phone with Maureen Mc, BS, RN, who seemed very knowledgeable

about NJ DAN! doctors. She poo-poo'd several from the list I was

reading to her, then recommended one near us. Her main complaints

about the DAN! list were that the professionals weren't vetted

thoroughly enough (my word) before they could declare themselves DAN!

practitioners, and also that there weren't " levels " ascribed to

practitioners. For instance, she would call herself " level 2 "

because she doesn't believe she's qualified to oversee chelation.

We've decided to see King, PhD, who works with Podell,

MD. I believe he specializes in epilepsy, while she specializes in

autism. Of course, they don't accept insurance, and the first visit

is $500, so I guess we'll see where we go from there. I just feel

like, after my first disappointing attempt with enzymes, I need some

medical guidance. My expectations for the visit I think are in

line. My biggest problem now is that I'm currently practically

memorizing 's book, and it makes so much sense to me, that I'm

already defensive about all the diets, then supplements because of

the diets, then supplements because of the supplements...

and I can tell from their literature they're going to recommend

GF/CF, etc.

Anyway, sorry this is so all over the place. Hope it helped

somewhat. Feel free to e-mail me privately if you think I can help

more.

> My 27 month old daughter was recently diagnosed with autism about

> three weeks ago. Since a couple of weeks before that time, we have

> been on the GF/CF diet. About a week ago, we started giving her No-

> Fenol and Peptizyde enzymes. We are also giving her some vitamin

> supplements and I just ordered Vitamin B6 and Magnesium and TMG.

> She also takes probiotics and just finished a course of anti-

fungals.

>

> I keep reading and wanting to do more and more for her because I

> think what I am doing so far has helped. I, however, am starting

to

> get a little nervous that I am just grasping at straws and may not

> be doing the right things. Other than our pediatrician, we do not

> really have any medical professional providing any guidance and our

> pediatrician is really no help to begin with.

>

> I keep hearing about DAN Doctors and that they are at least

> knowledgable about medical intervention and the various

treatments.

> Does anyone recommend them or any other type of doctor to offer

some

> guidance with all of this? I live in the PA/NJ area.

>

> Thanks,

>

> ERic.

[Guest guest]

> Does anyone recommend them or any other type of doctor to offer some

> guidance with all of this? I live in the PA/NJ area.

>

In my opinion, a cooperative local doctor who will work with you to do

testing and discuss options is probably a good idea. Does not have to

be a DAN doctor. You can purchase the DAN protocol and give it to a

local doctor you find that will work with you. Then learn about the

different things yourself, and discuss them with your doctor.

The primary advantage of doing it this way is that it will most likely

be covered by your insurance, whereas most DANs are not. Also, you

won't be stuck doing the doctors " favorite protocol " , but can have

more input on what you want for your child.

Dana

[Guest guest]

I think this is GREAT advice. My only concern is that we HAD a

wonderful, cooperative pediatrician in Chicago, who could really only

shrug his shoulders about the intricacies of the test results. Of

course, he was just a pediatrician (not " just " , but you know what I

mean), and I was brand new to all this, and I didn't have the DAN!

protocol...

But actually, this gives me an idea. Maybe before I shell out $500

to the local DAN! doc, I'll find a pediatric neurologist from our

insurance book, and take our results, plus the DAN! protocol, to him

or her -- for free. Not much to lose that way...

Would a ped. neuro. be the way to go? I'm just finding that regular

pediatricians just don't know enough about this stuff to offer much

other than prescriptions for testing (which was invaluable, yes).

>

> > Does anyone recommend them or any other type of doctor to offer

some

> > guidance with all of this? I live in the PA/NJ area.

> >

>

>

> In my opinion, a cooperative local doctor who will work with you to

do

> testing and discuss options is probably a good idea. Does not have

to

> be a DAN doctor. You can purchase the DAN protocol and give it to

a

> local doctor you find that will work with you. Then learn about

the

> different things yourself, and discuss them with your doctor.

>

> The primary advantage of doing it this way is that it will most

likely

> be covered by your insurance, whereas most DANs are not. Also, you

> won't be stuck doing the doctors " favorite protocol " , but can have

> more input on what you want for your child.

>

> Dana

[Guest guest]

> I think this is GREAT advice.

I will send you my bill LOL

> But actually, this gives me an idea. Maybe before I shell out $500

> to the local DAN! doc, I'll find a pediatric neurologist from our

> insurance book, and take our results, plus the DAN! protocol, to him

> or her -- for free. Not much to lose that way...

>

> Would a ped. neuro. be the way to go?

My pedneuro was useless, except for my son's dx and basically hopeless

prognosis. Hopefully you can find one who is more useful. Or

consider a developmental pediatrician, or other similar.

Good luck.

Dana

[Guest guest]

WAY TO GO RHONDA!!!!!!!!!

I wish I'd been a fly on the wall LOL, there are diet groups here in the UK

that delete posts about enzymes - running scared

MAndi in UK

> when it was finally my turn to ask my question I

> kinda forgot my wording and just came straight out and asked her why I

> should do the diet when I could just give my kid Pep instead. McCandless

> pretty much shot me down and said there was no proof that these enzymes

> were a better replacement or that they even worked at all. She also said

> that she knew of several children who got " very " sick from taking

> Houston's enzymes. SO, a few more people asked questions and then the

> woman from Hopewell (they were putting on the conference), said she just

> wanted to address my question again cause she didn't want anyone to think

> that you could replace the diet with a pill.

> I found McCandless to be somewhat condescending in her attitude about the

> diet. She came straight out and said she would refuse to take a patient

> who would not agree to do the diet 100%. I was kinda (no, not kinda) I

> was Pissed. I've been researching these enzymes for a year, I've read

> every post on this list and 's book as well, plus, I've spoken to

> Devin about them.

> After being shot down I decided that I wasn't leaving til I had a " real "

> reason to do the diet over enzymes. Being the pain in the ass that I am,

> during break I cornered the woman from Hopewell, I believe her name was

> Maureen O something. She basically told me that it was a " political "

> thing, she had issues with Devin's products because of Pangborn but

> wouldn't go into much detail. I pulled out 's book and she had the

> gall to say that there wasn't even proof that 's kids were autistic

> to begin with. (COME ON!!!) Finally after badgering her (she was

> getting uncomfortable with my persistence and she wanted to go have

> lunch), she just came out and said that enzymes may indeed work for some

> kids. I also cornered Binstock and another woman who worked for

> Hopewell. This woman said that she'd heard all kinds of good things

> about kids on Houston's but that's not what " they " were about. They

> (Hopewell) believed the best way to go was the diet. Now I had a problem

> with this. Here's these people saying there isn't a " pill " that fits

> everyone yet they were saying there's a " diet " that fits everyone.

> What????

> We ended up leaving early. You should have SEEN the stuff they had set

> up for us to buy. GFCF this and that and I left feeling that it was all

> a big scam. Now, I'm sure the diet DOES help alot of people, I don't

> doubt it at all. What really got me was that if there is something else

> that helps and is easier and SOOO much less expensive, then why not

> present that as an option as well? Especially since they were saying all

> they were trying to do is help us help our kids. I think they should

> have added that they were also trying to line their pockets with our

> money.

> Makes me angry every time I think about it. These DAN doc's that are

> trying to help us while stealing our money, I mean, what kind of doctor

> charges 500 dollars an hour if they really do want to help our kids?

> Ok, I " m just running on now but that was the jist of it and I just wanted

> to share.

>

[Guest guest]

In a message dated 22/4/03 8:18:32 pm, david_j_mead@... writes:

> I pulled out 's book and she

> had the

> > gall to say that there wasn't even proof that 's kids were

> autistic

> > to begin with.  (COME ON!!!)

>

hang on. I'm not sure they were autistic either. I don't remember

saying they were diagnosed. I think they sounded NOT altogether well, and

that the enzymes made them well. Not that this really matters, because the

enzymes working or not is not about whether they worked for 's kids or

any other single example, but whether they work well on the whole.

And of course the do work rather wonderfully for the most part, but not

everyone can abandon the dreaded diet, as we know.

Lucky for us the enzymes don't know if a person is autistic or not, they just

break down food!

reading these posts makes me kind of glad i can't afford the time or money

for conferences -- wow!

marti

[Guest guest]

I wouldn't get really hung up on the label of Dan because there is

no training or screening. Someone shows up at ONE conference and

gets their name on the list. Most people have very bad experiences

and lose tons of money. A small minority are satisfied. Dan has

certain business objectives that some people are more interested in

than helping you with your child.

It seems the best results overall come from finding someone that

will work with you locally. This might be a dan person, it might be

a naturopath, it might be a traditional pediatrician, it might be

the dry cleaners. Our gold mine was with a traditional neurologist

(not even a ped neuro) and she was simply awesome. Meaning my sons

and I got drastically better for not a big outlay of $$. From the

very beginning she gave me a 'protocol' of a couple meds,

supplements, and lifestyle changes (which some may consider are

sensory therapy or behavioral therapy). Whoever you are considering,

ask a bunch of parents for their experiences.

You will still need to oversee all this yourself because no one is

consistent with therapy or a road map. Even the dan people are all

over the board. I think having someone that takes insurance is a

good thing to do.

Good luck with this.

.

[Guest guest]

Ok, I had to reply. Last month I went to a conference to hear McCandless

and T.Binstock speak. I had asked before going how to approach

asking about enzymes and when it was finally my turn to ask my question I

kinda forgot my wording and just came straight out and asked her why I

should do the diet when I could just give my kid Pep instead. McCandless

pretty much shot me down and said there was no proof that these enzymes

were a better replacement or that they even worked at all. She also said

that she knew of several children who got " very " sick from taking

Houston's enzymes. SO, a few more people asked questions and then the

woman from Hopewell (they were putting on the conference), said she just

wanted to address my question again cause she didn't want anyone to think

that you could replace the diet with a pill.

I found McCandless to be somewhat condescending in her attitude about the

diet. She came straight out and said she would refuse to take a patient

who would not agree to do the diet 100%. I was kinda (no, not kinda) I

was Pissed. I've been researching these enzymes for a year, I've read

every post on this list and 's book as well, plus, I've spoken to

Devin about them.

After being shot down I decided that I wasn't leaving til I had a " real "

reason to do the diet over enzymes. Being the pain in the ass that I am,

during break I cornered the woman from Hopewell, I believe her name was

Maureen O something. She basically told me that it was a " political "

thing, she had issues with Devin's products because of Pangborn but

wouldn't go into much detail. I pulled out 's book and she had the

gall to say that there wasn't even proof that 's kids were autistic

to begin with. (COME ON!!!) Finally after badgering her (she was

getting uncomfortable with my persistence and she wanted to go have

lunch), she just came out and said that enzymes may indeed work for some

kids. I also cornered Binstock and another woman who worked for

Hopewell. This woman said that she'd heard all kinds of good things

about kids on Houston's but that's not what " they " were about. They

(Hopewell) believed the best way to go was the diet. Now I had a problem

with this. Here's these people saying there isn't a " pill " that fits

everyone yet they were saying there's a " diet " that fits everyone.

What????

We ended up leaving early. You should have SEEN the stuff they had set

up for us to buy. GFCF this and that and I left feeling that it was all

a big scam. Now, I'm sure the diet DOES help alot of people, I don't

doubt it at all. What really got me was that if there is something else

that helps and is easier and SOOO much less expensive, then why not

present that as an option as well? Especially since they were saying all

they were trying to do is help us help our kids. I think they should

have added that they were also trying to line their pockets with our

money.

Makes me angry every time I think about it. These DAN doc's that are

trying to help us while stealing our money, I mean, what kind of doctor

charges 500 dollars an hour if they really do want to help our kids?

Ok, I " m just running on now but that was the jist of it and I just wanted

to share.

Rhonda

mom to Olivia, 2 and a half

[Guest guest]

OH MY GOD!!! Where you at the same conference I just wrote about in my

last post? In Fall River?? Didn't it bother you at all how they

responded to the whole enzyme issue? I was very disappointed. I do

agree that McCandless knows alot, I learned alot from her book as well

but just really don't want to go the whole GFCF route. We tried it for a

month. My dog, who eats EVERYTHING, wouldn't touch a scrap of what the

baby dropped. I felt like I was starving my child and feeding her

cardboard. I found Theresa Binstock to be a breath of fresh air. She's

not on the diet which I thought odd.

[Guest guest]

Hi Cheryl,

I'm glad you found these people to be helpful to you and I don't

doubt your good intentions in posting your message. However, I would

not take any advice from Ms. McDonnell on anything based on her

treatment of and Devin and what we have done here to help

parents.

I hate to get into all the ugly details because it is so depressing,

but for anyone who missed the whole sordid tale, there are a number

of DAN people (McDonnell organizes their conferences) who have done

some not very nice things to Houston supporters and to Devin

himself. I'm sure there are some DAN people who are quite wonderful,

but Maureen McDonnell is not not quite on my wonderful list after

reading the things she fabricated to hurt , Devin and this list

(and therefore - a lot of kids). Maybe someday she'll come around.

I'm sure something she has done out there has helped someone in some

way, but personally, I would look elsewhere for advice because she

has not been truthful in the past.

Just my opinion, Cheryl - thanks for offering your experience.

[Guest guest]

You are my kind of gal!

I would love to challenge them to an enzyme debate with the guy that

spent his career studying enzymes. Think they'd do it? They can

even team up with Pangborn, 3 against 1. Heck, I'll debate them -

they cannot tell me that the teachers, speech therapists and I have

imagined all the improvements with my son since starting enzymes (and

going off the diet).

> Ok, I had to reply. Last month I went to a conference to hear

McCandless

> and T.Binstock speak. I had asked before going how to

approach

> asking about enzymes and when it was finally my turn to ask my

question I

> kinda forgot my wording and just came straight out and asked her

why I

> should do the diet when I could just give my kid Pep instead.

McCandless

[Guest guest]

Wow Rhonda-you go, girl!! LOL!!! These people make me insane. I had

a few not so friendly emails back during the " nasty " period around

here and if I needed another reason to try enzymes their

condescending pompous attitudes would have driven me to it. The cool

thing is that enzymes ( at least Devin's) DO work and more and more

people are hearing about it and trying it. I mean, come on-even if

you were a huge believer in gfcf (and I'm not against anyone who is-

just those who try and tell me I am poisoning my daughter by feeding

her " real " food) wouldn't you at least try something as easy as

enzymes? My daughter made so many improvement besides the benefit of

being able to stop off at the ice cream stands again. Ok, sorry-your

letter brought back a few memories lol. I am so happy you let those

people have it. It makes me most frusterated to think of the kids

being deprived enzymes because of those bafoons out there bad

mouthing Devin and enzymes. Grrrrr.

(oh-and I cannot believe she had the nerve to say that

about 's kids!!!! Oy.) ---

In , rhonda m pineau

<scottron2@j...> wrote:

> Ok, I had to reply. Last month I went to a conference to hear

McCandless

> and T.Binstock speak. I had asked before going how to

approach

> asking about enzymes and when it was finally my turn to ask my

question I

> kinda forgot my wording and just came straight out and asked her

why I

> should do the diet when I could just give my kid Pep instead.

McCandless

> pretty much shot me down and said there was no proof that these

enzymes

> were a better replacement or that they even worked at all. She

also said

> that she knew of several children who got " very " sick from taking

> Houston's enzymes. SO, a few more people asked questions and then

the

> woman from Hopewell (they were putting on the conference), said she

just

> wanted to address my question again cause she didn't want anyone to

think

> that you could replace the diet with a pill.

> I found McCandless to be somewhat condescending in her attitude

about the

> diet. She came straight out and said she would refuse to take a

patient

> who would not agree to do the diet 100%. I was kinda (no, not

kinda) I

> was Pissed. I've been researching these enzymes for a year, I've

read

> every post on this list and 's book as well, plus, I've spoken

to

> Devin about them.

> After being shot down I decided that I wasn't leaving til I had

a " real "

> reason to do the diet over enzymes. Being the pain in the ass that

I am,

> during break I cornered the woman from Hopewell, I believe her name

was

> Maureen O something. She basically told me that it was

a " political "

> thing, she had issues with Devin's products because of Pangborn but

> wouldn't go into much detail. I pulled out 's book and she

had the

> gall to say that there wasn't even proof that 's kids were

autistic

> to begin with. (COME ON!!!) Finally after badgering her (she was

> getting uncomfortable with my persistence and she wanted to go have

> lunch), she just came out and said that enzymes may indeed work for

some

> kids. I also cornered Binstock and another woman who worked for

> Hopewell. This woman said that she'd heard all kinds of good things

> about kids on Houston's but that's not what " they " were about. They

> (Hopewell) believed the best way to go was the diet. Now I had a

problem

> with this. Here's these people saying there isn't a " pill " that

fits

> everyone yet they were saying there's a " diet " that fits everyone.

> What????

> We ended up leaving early. You should have SEEN the stuff they had

set

> up for us to buy. GFCF this and that and I left feeling that it

was all

> a big scam. Now, I'm sure the diet DOES help alot of people, I

don't

> doubt it at all. What really got me was that if there is something

else

> that helps and is easier and SOOO much less expensive, then why not

> present that as an option as well? Especially since they were

saying all

> they were trying to do is help us help our kids. I think they

should

> have added that they were also trying to line their pockets with our

> money.

> Makes me angry every time I think about it. These DAN doc's that

are

> trying to help us while stealing our money, I mean, what kind of

doctor

> charges 500 dollars an hour if they really do want to help our

kids?

> Ok, I " m just running on now but that was the jist of it and I just

wanted

> to share.

> Rhonda

> mom to Olivia, 2 and a half

[Guest guest]

In a message dated 4/22/03 8:29:27 PM Eastern Daylight Time,

kjorn@... writes:

> The one that said he could qualify for

> an assortment of things and which diagnosis would I like?

>

It certainly seems as though the categories are redundant and arbitrary. My

son's been dx with SID after seeing an OT, but I've been making calls about

further testing only to help clarify exactly what things he's having trouble

with (whether eyes, cognitive functions, etc...). Although with enzymes he's

so much better I'm not sure if any diagnosis will be meaningful.

The slur on your kids and your book -- as though you wanted to make your

children seem sicker than they were? I don't think so! -- is really pathetic.

I really don't get why people are so close-minded about something so easy to

do.

Nell

[Guest guest]

I believe you have described the business of dan that many have come

to know. The dan system is built around the GFCF diet so they make

sure nothing is brought up that makes the diet unnecessary. Everyone

on the planet apparently thinks enzymes for digestion instead of

food elimination is a fantastic idea except those into the GFCF

diet. The diet is their 'thing' and they want people on it (buying

food, etc) and staying on it. Ever notice how lots of people

involved with GFCF are not happy if you say your kids got better on

Peptizyde? They become very angry very quickly.

If you want a business of selling diet food, that is a valid

business. But this is totally separate from someone interested in

getting the kid better.

>>>McCandless pretty much shot me down and said there was no proof

that these enzymes were a better replacement or that they even

worked at all.

She is quite wrong. There is actually far more long standing

clinical research on digestive enzymes than restrictive diets. But

she is older and that isn't her business model. As a doctor, how

responsible is that? Actually the enzymes work for the same reasons

the diet is supposed to work. So all the convincing arguments for

the diet only validate why enzymes work. That is the entire point.

But enzymes have shown they can do a whole lot more. Remember that

Pangborn who leads the dan is on the the payroll of Kirkmans. He has

a terrible conflict of interests.

It is too bad that you were not treated like a person, Rhonda, and

only seen as a paycheck.

>>>wanted to address my question again cause she didn't want anyone

to think that you could replace the diet with a pill.

A lot of people can. It has been two years. How behind do they

intend to stay?

>>>>She came straight out and said she would refuse to take a

patient who would not agree to do the diet 100%. I was kinda (no,

not kinda) I was Pissed.

Cha-Ching!!! I think you have your answer.

>>>>She basically told me that it was a " political " thing,

I agree with this. Dan is known as incessantly political and

business goals may override the health of patients. I think there

are really a very few individuals who dictate to the rest. Most

average parents are able to think for themselves and they know

Peptizyde and other enzymes work great. Someone here and there may

not be able to use it instead of the diet, but getting off the diet

somehow is a reasonable goal - it means the child is healthy again!

Same with toxin removal, antivirals, etc.

>>>'s kids were autistic to begin with. (COME ON!!!)

Notice she attacked some little children she doesn't even know with

an emotional response rather than give you a straight scientific

answer.

>>>she just came out and said that enzymes may indeed work for some

> > kids.

And look how much effort you had to go through to get to pry out

that bit of truth and how much you got jerked around as she tried

desperately not to have to spit the truth out.

One of the intense problems with this is that how do you know that

anything said by such a person is true? How do know that you might

really need a test or this might be another ploy to conceal the

truth at all costs? How do you know you really should take a certain

anti-fungal, or remove toxins in a certain way?

>>>>This woman said that she'd heard all kinds of good things

> > about kids on Houston's but that's not what " they " were about.

This was very honest and at least I respect this person for being

honest. The organization has no interest in working off the diet

whether it is dramatically helpful for someone or not. That is

completely different than trying to tell someone something doesn't

work at all...and in some other way try to 'blame the parent'.

>>>>You should have SEEN the stuff they had set up for us to buy.

GFCF this and that and I left feeling that it was all a big scam.

Now, I'm sure the diet DOES help alot of people, I don't doubt it at

all.

Right. Peptizyde works for the same reason. Maybe one day everyone

will not need a special diet because they are BETTER. Choosing to be

on a diet as a personal preference is one thing, but HAVING to do

because you are ill is another.

>>>>What really got me was that if there is something else that

helps and is easier and SOOO much less expensive, then why not

present that as an option as well? Especially since they were

saying all they were trying to do is help us help our kids. I think

they should have added that they were also trying to line their

pockets with our money. Makes me angry every time I think about

it. These DAN doc's that are trying to help us while stealing our

money, I mean, what kind of doctor charges 500 dollars an hour if

they really do want to help our kids?

[Guest guest]

> My 27 month old daughter was recently diagnosed with autism about

> three weeks ago. Since a couple of weeks before that time, we

have

> been on the GF/CF diet. About a week ago, we started giving her

No-

> Fenol and Peptizyde enzymes. We are also giving her some vitamin

> supplements and I just ordered Vitamin B6 and Magnesium and TMG.

> She also takes probiotics and just finished a course of anti-

fungals.

>

> I keep reading and wanting to do more and more for her because I

> think what I am doing so far has helped. I, however, am starting

to

> get a little nervous that I am just grasping at straws and may not

> be doing the right things. Other than our pediatrician, we do not

> really have any medical professional providing any guidance and

our

> pediatrician is really no help to begin with.

>

> I keep hearing about DAN Doctors and that they are at least

> knowledgable about medical intervention and the various

treatments.

> Does anyone recommend them or any other type of doctor to offer

some

> guidance with all of this? I live in the PA/NJ area.

>

> Thanks,

>

> ERic.

>>>Hi, ,

I know exactly how you feel: overwhelmed w/ information and

not sure if you are doing it right! In Feb. I spent about $1200.00

between the DAN! doc visit and the GPL tests he had us do. I wish I

had held off. The tests didn't tell me anything I didn't already

know: yeast & peptide issues. I'm kicking myself because that

$1200.00 would have bought A LOT of enzymes! LOL

I did my first round of chelation on my son this past weekend, and

it went fine. I got all the info I needed from this wonderful group,

and the autism treatment group. I trust other parents' experience much

more than I trust any doc's at this point. I've learned to trust my

own instincts about what is best for my child, who I live with every

day.

Best of luck,

e

[Guest guest]

I wouldn't go that far. I just asked a couple questions and when I

didn't get the answers I'd hoped for, I asked a couple more. But thanks,

nice little boost for my ego!

[Guest guest]

Ok, you may have a point about her kids being undx'd, but they (according

to ) definately had SOMETHING going on, whether they were on

spectrum or not, but I " m leaning towards spectrum.

Also, the best part of this conference for me was that it was free! Our

Early Intervention payed for it so that was a bonus.

[Guest guest]

Way to go Rhonda!!!!

I have opted to go the Houston enzyme route with my 4 year old son (ASD)...we

just started 3 weeks ago, so needless to say, we are still going through the

" trying to find the right type and combination " phase, but I have already seen

several positive results!!! It is wonderful!! And so are enzymes!!

Like many others, I am not opposed to the gfcf diet, but as a single mom,

working 40+ hours a week, with a very picky little eater, the diet was going to

pretty much be next to impossible, I couldn't afford it, and basically just

couldn't manage it alone, especially not being able to be present during almost

every meal my son ate, except for on the weekends.

I am grateful and comfortable knowing that there is a list like this one where I

am supported in my decision to use enzymes.

Thanks to all who post!

[Guest guest]

>>>> Ok, you may have a point about her kids being undx'd,

Actually my kids have been diagnosed a number of times. Which one

would you like? The one that said was ADD at school but not

at home? The one that said he certainly acted autistic so please

take him to the children's habilitation center? The one that said it

was just allergies? That one that said he was extraordinarily gifted

and that quirkiness was a part of that? The one that said he was

neurologically odd? The school testing that came back saying he

qualified for both the gifted and talented program, as well as the

special ed remedial at the same time and they simply didn't know how

to place that type of person? The one that said he could qualify for

an assortment of things and which diagnosis would I like?

I won't even get into the issues with Younger Son as it would extend

another paragraph and 2 inches of medical records.

But fortunately enzymes are not dependent on diagnosis and that is

very nice because people are not excluded. The only reason kids are

being attacked by adults who claim they care about kids is because

the adults are THAT desperate and cannot justify what they are doing

or saying.

.

[Guest guest]

In a message dated 22/4/03 9:02:15 pm, kjorn@... writes:

> How do know that you might

> really need a test or this might be another ploy to conceal the

> truth at all costs?

>

Here's where I wish we parents, as a group, could have more information and

wisdom. I spend my time vacillating between guilt over not testing, and

concern over wasting what money we have.

You can get so many tests and what do they tell you? Often conflicting info

or problems nobody knows how to cure.

marti

[Guest guest]

I know 's kids had something going on, just didn't want to say they were

autistic when they managed to escape that label. And now, of course, they

are just fine. thank God!!!!

Wow, you got a conference paid for -- well done!

I feel like a hillbilly over here.....

marti

[Guest guest]

In a message dated 23/4/03 12:29:52 am, kjorn@... writes:

> Actually my kids have been diagnosed a number of times. Which one

> would you like? The one that said was ADD at school but not

> at home? The one that said he certainly acted autistic so please

> take him to the children's habilitation center? The one that said it

> was just allergies? That one that said he was extraordinarily gifted

> and that quirkiness was a part of that? The one that said he was

> neurologically odd? The school testing that came back saying he

> qualified for both the gifted and talented program, as well as the

> special ed remedial at the same time and they simply didn't know how

> to place that type of person? The one that said he could qualify for

> an assortment of things and which diagnosis would I like?

>

I think the point is that if he was borderline specifically on the autism

diagnosis, arguing about whether 1-2 kids out of the universe is/isn't

autistic is not the point.

I have to admit that when I read you book and heard about them, I thought, oh

no. They weren't autistic. Of course, that isn't true in the broad sense

of " autistic " they were -- probably, I don't know them! You do! -- but

when you've had the child who can't talk, use a toilet, walk anywhere, engage

at all, etc etc. then you (me I mean) have a different idea of what it means

to be " autistic " . So when I read the book, I actually wondered if the

enzymes would work or not. My child was too bad off, I thought, to do as w

ell as the kids with the mild diagnosis or mixed diagnosis. Nobody ever

quibbled about Nicky's diagnosis, you see. He was too obvious a case.

And having an Asperger child, I thought. yeah, but the asperger is

nothing compared to THIS.

But turns out that the enzymes worked anyway.....

YEAH!

Marti

[Guest guest]

WOW. This list is so much different than the gfcfkids.com list.

That is where I got my opinion that DAN! was the way to go. I've

got to weigh all of this info...

It is assinine to believe that some kids cannot recover without the

diet. It seems the whole DAN! basis is that all autistic kids are

vastly different in cause, presentation and response to even their

protocol. I just liked the idea of healing the child instead of

medicating the symptoms.

The diet is working for us. No miracles. But, I am working toward

getting off of the diet. Who wouldn't have that goal?

BTW, I actually like the foods on the diet. It is really just a

back to basics kind of eating. If I could throw oats and butter in

to the mix, I'd have little problem with it. I am sure things will

get harder once my son is older (he's 2) and ventures out from

beneath my rule.

Pam

> OH MY GOD!!! Where you at the same conference I just wrote about

in my

> last post? In Fall River?? Didn't it bother you at all how they

> responded to the whole enzyme issue? I was very disappointed. I

do

> agree that McCandless knows alot, I learned alot from her book as

well

> but just really don't want to go the whole GFCF route. We tried

it for a

> month. My dog, who eats EVERYTHING, wouldn't touch a scrap of

what the

> baby dropped. I felt like I was starving my child and feeding her

> cardboard. I found Theresa Binstock to be a breath of fresh air.

She's

> not on the diet which I thought odd.