Re: Re: blood tests/immunology

April 20, 2001

You guys are all starting to sound like first year medical students.

BEWARE!! You'll find yourself becoming convinced your child has every

disease known to man (and if you REALLY get into it, you'll start believing

they got it because you have it!!) Am I alone here in trusting that if any

of this labwork is grossly abnormal Dr. Goldberg would address it in a phone

conf., not wait for you to bring it up? Don't sweat the small stuff--judge

by how well your child looks and acts and leave the details to the experts.

As a nurse practitioner, I spent WAY too many years taking the responsibility

for being both mom and doctor to my son. When I FINALLY found Dr. Goldberg

and actually met him, I breathed such a sigh of relief because at last I had

found someone who is caring and knowledgeable. Forget trying to out guess

and out -think the expert. Relax and be a mom or dad...believe me, he hasn't

failed us yet has he?!!

April 21, 2001

In a message dated 4/20/01 9:12:56 PM Eastern Standard Time,

eahcsc@... writes:

> . I simply no longer trust professionals

> with absolute faith.

Well said! I feel the exact same way. I have taken my son to see so many

doctors who either just wanted to put my son in a constant state of sleep or

doctors who just wanted to take advantage of our situation and charge us a

fortune. I really like what Dr Goldberg has to say, but does that mean I

trust him with 100% of my son's recovery? NO WAY! And I don't think Dr.

Goldberg would want me to either.

April 21, 2001

a,

Amen. It is our responsibility to research everything related to what

treatments, etc., our children receive. As we know, there are people out there

willing to become rich off our family's misery, and we don't know who these

people might be. It's up to us to be aware and informed.

Kathy

Re: blood tests/immunology

> You guys are all starting to sound like first year medical

students. Am I alone here in trusting that if any

> of this labwork is grossly abnormal Dr. Goldberg would address it

in a phone conf., not wait for you to bring it up? Don't sweat the

small stuff

It was my trust in doctors that allowed my son to be immunized

with the MMR shot two days after having the flu. It was

my trust in doctors that allowed me to hold my son , who was

shaking with a 103.5 fever within 12 hrs of the MMR , and say

" well. okay. " whilea nurse

at the doctors office told me that it was just a coincidence

and give him some tylenol. It was my trust in doctors that allowed

me to not look as to why my son was chronically constipated or

suffering from diahrea.....

Look.. I realise that many people are very confident in the

treatment of their children. I simply no longer trust professionals

with absolute faith. We are indeed patients of doctor Goldberg

but I don't put him on a pedestal and believe him to be God.

It is an absolute disservice to both my child and to Dr. Goldberg

himself. The man will have to justify everything he does especially

since this doesn't come cheap.

The other " beef " I have is ... well... I will say it

rather publically since I have been saying it in private

for some time......

If parents following

the protocal do not QUESTION and just keep posting " have

faith in Dr. Goldberg " , there is a tendency to look like Groupies

rather than informed patients. I get a little concerned

sometimes because.... it almost sounds like religion rather than

science. This doesn't help . It doesn't help further immune

research into autism....

I get it from all sides. I do

ABA. Think my ABA consultants like Goldberg? Nope. Think it would

help my cause if I said " well, gee. I have faith in Goldberg. "

My consultant , a die hard antidiet antibiomedical treatment person

approached me last year at a FEAT conference. She had spoken

with Lynn Hamilton and told me that she was kinda scoffing at

Lynn Hamilton. She then remembered that I do the diet and

some other stuff and she started asking me some questions because

" I seemed like I was reasonable and scientific. " I then proceeded

to tell her the reasons behind it. She actually started thinking

about the merits of it.. (don't really know if she continued

to do so but she at least thought for a moment about it.) If I

had just said " have faith " , she would have not even considered

the merits of biomedical treatments for even a second.

Just trusting...

That is the same thing that would kill any due process hearing

for ABA- the rehabilitative therapy that really has helped my son in

an incredible way. I am really frightened by the fact that

there is a growing number of people who never question professionals.

I question everyone. I question my ABA consultants. I question

my new pediatrician, I will question Goldberg more on long term

antifungal use (a real concern I have... Doesn't that risk

resistance? What about the possibility that SSRI usage can

cause " mania " in children? etc)

Plus, I am rather shocked at the number of us parents who simple

take our children into the labs for tests and don't bother to find

out what we are testing for and why. Gads. We seem to spend more

time finding out what is on TV then what RBC is on the blood

report and why we should care............

I question myself constantly and I think these questions are

good because they keep me in check. I have run into a large

number of " autism professionals " who have well... become more

ego than anything else.

Anyway, I will continue to question and research because

that is my responsibility as a parent.

April 21, 2001

-

I agree with most of your comments. We have been with Dr. G for almost two

years. I think that questions are good things - especially when you are

trying to get the word out and people that want to " do Goldberg " ask a

heckuvalot of questions! I would love to know exactly what all her

bloodwork means - but, I don't walk around wringing my hands about it. If

something is way off track from one draw to the next - I send in my e-mail

and ask about it. I agree that putting full trust in anyone - doctor,

speech therapist, behaviorist, etc... is very convenient. I get tired of

being in charge. I get tired of micro-managing every aspect of my

daughter's " education " and " therapy " . Sometimes I do take a break and go on

auto-pilot, but I pick up the reins again and ask for test scores and " where

are we going with this " questions. I have often joked that you could never

hire anyone to do my job - coordinate all therapy, take all the goals of

EACH therapy and reinforce them at home, maintain an extensive pharmacy in

my home, follow the diet, volunteer the zillion hours at school, attend

committee meetings, keep current on different new therapies, etc., etc, and

OH YEAH, I have two other children. It would be wonderful to sit back and

let someone else take over, but I want to make the decisions on what we are

doing and will defer to good common sense and those whose experience I

trust. So, you need to question and you also need to trust.

Dr. Goldberg keeps his website OPEN just for questions. He continually

reminds us that we need to " demand good science " . This includes him. I

thank God that he " questioned " why his wife and AI kids in his pediatric

practice had such high viral titers. I don't know where we would be today

if not for his searching and butting heads against " established Western

science " for these past years (eight or more???). So both of you are kind

of right. You need to find a middle ground and stay the course. I would

never " blindly " follow anyone because #1, no one is going to care more about

my child than me, but Dr. G has been a firm grip in our crazy world and I am

grateful for it.

Ginger

Re: blood tests/immunology

>

> > You guys are all starting to sound like first year medical

> students. Am I alone here in trusting that if any

> > of this labwork is grossly abnormal Dr. Goldberg would address it

> in a phone conf., not wait for you to bring it up? Don't sweat the

> small stuff

>

> It was my trust in doctors that allowed my son to be immunized

> with the MMR shot two days after having the flu. It was

> my trust in doctors that allowed me to hold my son , who was

> shaking with a 103.5 fever within 12 hrs of the MMR , and say

> " well. okay. " whilea nurse

> at the doctors office told me that it was just a coincidence

> and give him some tylenol. It was my trust in doctors that allowed

> me to not look as to why my son was chronically constipated or

> suffering from diahrea.....

>

> Look.. I realise that many people are very confident in the

> treatment of their children. I simply no longer trust professionals

> with absolute faith. We are indeed patients of doctor Goldberg

> but I don't put him on a pedestal and believe him to be God.

> It is an absolute disservice to both my child and to Dr. Goldberg

> himself. The man will have to justify everything he does especially

> since this doesn't come cheap.

>

> The other " beef " I have is ... well... I will say it

> rather publically since I have been saying it in private

> for some time......

>

> If parents following

> the protocal do not QUESTION and just keep posting " have

> faith in Dr. Goldberg " , there is a tendency to look like Groupies

> rather than informed patients. I get a little concerned

> sometimes because.... it almost sounds like religion rather than

> science. This doesn't help . It doesn't help further immune

> research into autism....

>

> I get it from all sides. I do

> ABA. Think my ABA consultants like Goldberg? Nope. Think it would

> help my cause if I said " well, gee. I have faith in Goldberg. "

> My consultant , a die hard antidiet antibiomedical treatment person

> approached me last year at a FEAT conference. She had spoken

> with Lynn Hamilton and told me that she was kinda scoffing at

> Lynn Hamilton. She then remembered that I do the diet and

> some other stuff and she started asking me some questions because

> " I seemed like I was reasonable and scientific. " I then proceeded

> to tell her the reasons behind it. She actually started thinking

> about the merits of it.. (don't really know if she continued

> to do so but she at least thought for a moment about it.) If I

> had just said " have faith " , she would have not even considered

> the merits of biomedical treatments for even a second.

>

> Just trusting...

> That is the same thing that would kill any due process hearing

> for ABA- the rehabilitative therapy that really has helped my son in

> an incredible way. I am really frightened by the fact that

> there is a growing number of people who never question professionals.

> I question everyone. I question my ABA consultants. I question

> my new pediatrician, I will question Goldberg more on long term

> antifungal use (a real concern I have... Doesn't that risk

> resistance? What about the possibility that SSRI usage can

> cause " mania " in children? etc)

>

> Plus, I am rather shocked at the number of us parents who simple

> take our children into the labs for tests and don't bother to find

> out what we are testing for and why. Gads. We seem to spend more

> time finding out what is on TV then what RBC is on the blood

> report and why we should care............

>

> I question myself constantly and I think these questions are

> good because they keep me in check. I have run into a large

> number of " autism professionals " who have well... become more

> ego than anything else.

>

> Anyway, I will continue to question and research because

> that is my responsibility as a parent.

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

April 24, 2001

In a message dated 4/24/01 11:56:16 AM Eastern Standard Time, evchk96@...

writes:

> I am taking my son to see Dr. G. I notice a lot of you have your children

> in ABA therapy. How do you know it's not just the ABA that is making your

> children better? I have heard and seen in the media, children who

> completely recovered with just ABA. I consider ABA to be an extreme. If I

> have to go that route and take my child to Dr. G, I don't know. I was

> under the impression that this was a disease of a problematic immune

> system, that Dr. G can help. I can see a child needing therapy (speech,

> O.T., etc), because this disease has caused them to regress, but why would

> they need ABA? I was at the Iowa conference, and Dr. G eluded to the idea

> that parents shouldn't have to be spending $60,000.00 a year on ABA, when

> what their children had was a " neuroimmune dysfunction " that could possibly

> be helped with good, sound medical practice (antifungals, antivirals,

> SSRI'S). I am confused??

>

When I saw Dr. G speak, he said that we would still all need therapists--I

thought he meant ABA therapists--to bring our kids back up to where they

should be. Your child will still need intensive therapy if your child is as

far behind as mine. (He is 6 years old, but developmentally is still about

2.) Yes, ABA is intensive, but it is the best shot all of our kids have.

Pursue all avenues--biomedical, ABA, speech, OT. That is my motto!

April 24, 2001

To All,

I am taking my son to see Dr. G. I notice a lot of you have your children in

ABA therapy. How do you know it's not just the ABA that is making your children

better? I have heard and seen in the media, children who completely recovered

with just ABA. I consider ABA to be an extreme. If I have to go that route and

take my child to Dr. G, I don't know. I was under the impression that this was

a disease of a problematic immune system, that Dr. G can help. I can see a

child needing therapy (speech, O.T., etc), because this disease has caused them

to regress, but why would they need ABA? I was at the Iowa conference, and Dr.

G eluded to the idea that parents shouldn't have to be spending $60,000.00 a

year on ABA, when what their children had was a " neuroimmune dysfunction " that

could possibly be helped with good, sound medical practice (antifungals,

antivirals, SSRI'S). I am confused??

Re: Re: blood tests/immunology

In a message dated 4/20/01 9:12:56 PM Eastern Standard Time,

eahcsc@... writes:

> . I simply no longer trust professionals

> with absolute faith.

Well said! I feel the exact same way. I have taken my son to see so many

doctors who either just wanted to put my son in a constant state of sleep or

doctors who just wanted to take advantage of our situation and charge us a

fortune. I really like what Dr Goldberg has to say, but does that mean I

trust him with 100% of my son's recovery? NO WAY! And I don't think Dr.

Goldberg would want me to either.

April 24, 2001

Once Dr. G's protocol began to help our son's system get regulated, the ABA

began to work even more effectively and quickly. We had begun ABA before we

started working with Dr. G, and it had been one of the earliest hope-givers

for us. It was as if our son's brain was " jump-started " those first couple

of months of our ABA program. Once our son began Dr. G's protocol, he began

to catch up and make up for lost time at a quicker rate. It's this

making-up-for-lost-time component that makes ABA and the other therapies

necessary, not superfluous, in the total recovery process.

ABA is practiced differently by different people, and has gotten a bad rap in

some circles for the use of harsh aversives and other questionable practices.

I highly recommend the ABA as administered by the Center for Autism and

Related Disorders (CARD) in suburban L.A., 818/995-HOPE.

Warren

April 25, 2001

Dr. Goldberg doesn't think that you just solve the immune system problem and

everything goes away. He knows therapy MUST be done to get your child back on

track. Yes, he thinks it's unfortunate people have to spend $60,000 per year

on ABA, but particularly because many of those people think ABA IS the

answer, when it isn't. It doesn't solve anything-Goldberg's protocol does.

Our kids have missed alot, and just because you solve the medical problem,

they aren't just going to wake up and everything is normal. Too many people

think that. There are years of learning which need to be compensated for. I

personally think there are much better therapies other than ABA, but you MUST

do something else, other than the pure medical approach.

April 25, 2001

We use CARD (Greensboro NC office) too, along with PECS for my mostly

nonverbal child. I can't recommend CARD highly enough. They are marvelous.

They never ever use an aversive, not even a harsh " no. "

Like Warren's kids, our children's skill aquisition rates skyrocketed with

the goldberg protocol!

April 25, 2001

In a message dated 4/25/01 8:03:27 AM Eastern Daylight Time, psadka@...

writes:

<< My son may be non verbal for a little while longer but using " oral apraxia

made easy for preschoolers " approach he has developed a solid

base of expressive sounds which allow him to read aloud. All the visual cues

combined with signing is setting him up for spontaneous

speech. >>

Hi Mercy,

Where could I get more information on the oral apraxia made easy for

preschoolers program? Thanks...it sounds like something a friend of mine

could really use for her son!

Traci

Traci Yates-Poff

author of " Turn Around Bright Eyes: Visions of Refuge From the War Against

Autism, " debuting spring 2002.

April 25, 2001

In a message dated 4/25/01 7:03:30 AM Eastern Standard Time, psadka@...

writes:

> My son did not benefit from ABA as much as other children did part of it is

> because of lack of people and resources. The minute you train

>

This is exactly our situation. I have no doubt that my son would have done

much better on ABA if we had been able to find funding and help. We have

only been able to do about 20 hours of ABA, and Dr. Lovaas original study

showed that you must do at least 40 hours per week of ABA. Also, we worked

for 2 years without a consultant. I did all of that myself and honestly did

NOT know what I was doing. I know that many kids have normalized with ABA

alone. But unless you have money and help, it is just impossible to give

your kid that many hours. Therefore, I look for other answers. I know that

once we get his immune system working properly, we will be able to get

further with the amount of ABA we do.

April 25, 2001

Mercy,

Have you looked into Verbal Behavior Therapy? It's a method of doing ABA

that promotes speech and fluency and really keeps the kids interested. It's

being taught throughout the country by Dr. Carbone (has great

workshops), Mark Sundberg and some others. I can give you some more info if

you want. Is your son still on lots of meds? I'm just beginning to get all

the bloodwork done for the NIDs tests then I'm going to contact Dr. Goldberg.

Currently my son is undergoing chelation with many improvements. Does Dr.

Goldberg address heavy metal poisoning at all? When/or do you know why your

son began

to sleep through the night?

In a message dated 4/25/2001 8:03:30 AM Eastern Daylight Time,

psadka@... writes:

<< Dear all

My son did not benefit from ABA as much as other children did part of it is

because of lack of people and resources. The minute you train

someone they are gone in 6 months. Only one young lady stayed with us

through thick and thin for five years. My son did benefit and learned

a lot but because he is non verbal he was held back. When we brought Dr. G

protocol in two years later, he learned how to use the computer

(which that by itself boosted his learning). He became intrigued with his

brother's play patterns and started imitating him. He started

sleeping at night and became more aware of his surrounding. At the age of 6

and 1/2 his comprehension in language skills tested at about

the age of a three year old. With home schooling and a year later his scores

ranged at the five year old level. I know I could not have

done it without a combination of Dr. G, home schooling, 2 hours of

speech/week, 2 hours of OT/week, 8 hours of ABA, and lots and lots of

faith and prayer.

My son may be non verbal for a little while longer but using " oral apraxia

made easy for preschoolers " approach he has developed a solid

base of expressive sounds which allow him to read aloud. All the visual cues

combined with signing is setting him up for spontaneous

speech.

One thing I do and I do not know how other parents feel about it, I do not

allow anyone to talk about my son in his presence. He

understands every word uttered about him. I always tell him that he is a

smart boy and commend him on his effort. The more I talk to him

the more effort he puts in. Other people give me " this look " when I ask them

not to discuss his progress or situation in his presence. Does

anybody else get " this look " ?

Mercy

cwither43@... wrote:

> Dr. Goldberg doesn't think that you just solve the immune system problem

and

> everything goes away. He knows therapy MUST be done to get your child back

on

> track. Yes, he thinks it's unfortunate people have to spend $60,000 per

year

> on ABA, but particularly because many of those people think ABA IS the

> answer, when it isn't. It doesn't solve anything-Goldberg's protocol does.

>

> Our kids have missed alot, and just because you solve the medical problem,

> they aren't just going to wake up and everything is normal. Too many people

> think that. There are years of learning which need to be compensated for. I

> personally think there are much better therapies other than ABA, but you

MUST

> do something else, other than the pure medical approach.

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

April 25, 2001

Dear all

My son did not benefit from ABA as much as other children did part of it is

because of lack of people and resources. The minute you train

someone they are gone in 6 months. Only one young lady stayed with us through

thick and thin for five years. My son did benefit and learned

a lot but because he is non verbal he was held back. When we brought Dr. G

protocol in two years later, he learned how to use the computer

(which that by itself boosted his learning). He became intrigued with his

brother's play patterns and started imitating him. He started

sleeping at night and became more aware of his surrounding. At the age of 6 and

1/2 his comprehension in language skills tested at about

the age of a three year old. With home schooling and a year later his scores

ranged at the five year old level. I know I could not have

done it without a combination of Dr. G, home schooling, 2 hours of speech/week,

2 hours of OT/week, 8 hours of ABA, and lots and lots of

faith and prayer.

My son may be non verbal for a little while longer but using " oral apraxia made

easy for preschoolers " approach he has developed a solid

base of expressive sounds which allow him to read aloud. All the visual cues

combined with signing is setting him up for spontaneous

speech.

One thing I do and I do not know how other parents feel about it, I do not allow

anyone to talk about my son in his presence. He

understands every word uttered about him. I always tell him that he is a smart

boy and commend him on his effort. The more I talk to him

the more effort he puts in. Other people give me " this look " when I ask them not

to discuss his progress or situation in his presence. Does

anybody else get " this look " ?

Mercy

cwither43@... wrote:

> Dr. Goldberg doesn't think that you just solve the immune system problem and

> everything goes away. He knows therapy MUST be done to get your child back on

> track. Yes, he thinks it's unfortunate people have to spend $60,000 per year

> on ABA, but particularly because many of those people think ABA IS the

> answer, when it isn't. It doesn't solve anything-Goldberg's protocol does.

>

> Our kids have missed alot, and just because you solve the medical problem,

> they aren't just going to wake up and everything is normal. Too many people

> think that. There are years of learning which need to be compensated for. I

> personally think there are much better therapies other than ABA, but you MUST

> do something else, other than the pure medical approach.

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

April 25, 2001

Hi,

I would also llike to find out about this apraxia for preschoolers program.

If you have any further info, please fill me in !! Thanks in advance! Kathy

April 25, 2001

Hi

The program is for Speech pathologist but anyone can have access to it. It is

put out by Linguisystems, Inc. and is called Easy does it for

Apraxia - Preschool. It is very involved but I found it helpful. My son's speech

therapist let me have hers.

The authors' names: Robin M Strode and Chamberlain. The toll free

number is 1-800-776-4332

I hope that helps.

Mercy

starmuser@... wrote:

> In a message dated 4/25/01 8:03:27 AM Eastern Daylight Time, psadka@...

> writes:

>

> << My son may be non verbal for a little while longer but using " oral apraxia

> made easy for preschoolers " approach he has developed a solid

> base of expressive sounds which allow him to read aloud. All the visual cues

> combined with signing is setting him up for spontaneous

> speech. >>

>

> Hi Mercy,

>

> Where could I get more information on the oral apraxia made easy for

> preschoolers program? Thanks...it sounds like something a friend of mine

> could really use for her son!

>

> Traci

>

> Traci Yates-Poff

> author of " Turn Around Bright Eyes: Visions of Refuge From the War Against

> Autism, " debuting spring 2002.

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

April 25, 2001

To all parents,

Thank you to all who responded. I now know that ABA doesn't have to be the

35-40 hrs/wk I thought it was, which really scared me. I now just have to find

a program around here (Chicago)

that will do less. It also is good to know that your children were able to

learn more and better after Dr. G's protocol. I wish you all the best,

especially your children. Kathy