Dan vs. Nids

[Guest guest]

Hi ,

You asked about the difference between the Dan Protocol and Dr. Goldberg.

The following is my opinion and not that of SCIA. The original answer I

tried to post at " The Stop Calling It Autism " list was censored by the

moderator, . He said, " Championing a protocol is against the SCIA! list

rules. " But it is important to say that although may not work for all

kids, it worked for my son. I worked hard for SCIA and still believe in the

premise of the organization. However, my board position and the other

members of the SCIA board were terminated by without any notification

to any of us. He replaced Kathy on, Bill Klimas and me with his

wife, sister and himself. As a result, I am no longer a member of the SCIA

organization.

Now to answer your question of DAN vs.. When my son was little, I

started with Sidney Baker who is the primary author of the Dan protocol.

Although he helped my son, he did not take things to the degree that

does. He gave us many unnecessary supplements. At first I thought they

were helping and kept taking some of them, but eventually I realized

they were not doing anything and stopped them. Megadoses of anything can be

dangerous.

Dr. Baker thought that autism was a result of a leaky gut. Dr. G he

believes that the gut problem is a secondary result of a bigger issue, an

immune system that fires when it shouldn't and sometimes doesn't work when

it should. Dr. Goldberg uses proven scientific methods of treating

children.

Our children all have something in common. Their immune systems are not

functioning properly. Kids like my son, , have shown that if

their medical problems can be corrected, they can lead normal lives. The

medications my son is taking help his immune system to function.

Unfortunately, these interventions are not yet a cure. If I stopped his

medications, he could regress. But his successful treatment and the

treatment of others like him have shown that the physicians are correct

in their theories.

Autistic children like my son are proving they are individuals with normal

or above normal intelligence. Unfortunately, they are often

thought of as kids that cannot be helped. Unfortunately, each child with

is different. What works for one might not work for

another. Although similarities exist, each child with autism may have

different medical problems. Extensive lab work needs to be done to

determine what is not working in each individual. The Northern New York

Autism Clinic, Dr. Goldberg and Dr. in Texas are the only ones I

know of that use the protocol.

My kid made it, is in college and has a wonderful life, but there are too

many children with autism that never will. Some parents have

given up hope of ever helping their children. I want them to know that our

kids can get better. The interventions both medically and behaviorally were

not an instant " cure " and are not for any family who is not willing to work

unlimited hours. We worked at this twenty-four hours a day. No one other

than a parent can be that obsessive and stubborn about continuing when

sometimes there were no signs that my son was getting better. The hardest

part was to keep going. When he was little I really didn't believe he would

ever be " normal. " His behavior was so bizarre. Even though I thought he

would never be okay, I did many things so I wouldn't have guilt later. I

wanted to be able to say I did everything possible to make my child better.

In the beginning, it was how to tell which medical interventions were

working. How can you tell if medicine is working when your child has limited

verbal ability? It takes almost three years for a " normal " child to learn

language. Even if someone could wave a magic wand made my child's body

normal, he still wouldn't have been normal or had instant language. He

spent too many years not speaking, not learning what he should, and learning

weird behaviors that helped him survive this hell. It took many years to

reteach him. I know my son would not be okay if we had not found Dr.

Goldberg.

Hope this helps,

Marcia

[Guest guest]

Dear Marcia,

You know we all love you for the great person you are, because all of you have

done to help so many people over the years. We love and we are so proud of

everything he has accomplished in his life, we all also wish him the greatest

success anybody could ever have.

It is true that Kathy on, Bill Klimas and you are an exceptional group of

individuals, but we couldn't pull it together as a team. Bill and Kathy just

don't have the time needed to launch and make Stop Calling It Autism! a

successful organization. Kathy told me that she doesn't believe that building a

medical disease registry would not work after she said that she want to joining

SCIA. Bill Klimas told us multiple times that he would quit every single time

we didn’t agree on something. You told me that we should write down in the

SCIA's rules that you could fire me from the organization if things didn’t go as

planned. I am a newcomer representing the new generation of parents affected by

autism and I brought a great idea to the table and I couldn’t believe my ears

when you said that to me. All I did and I have all the records of it is to make

things work and be a mediator to make everybody happy. I worked endlessly for

over a month and half trying to make things work. Bill and Kathy even treated

me mean and I have emails to prove it. It really saddened me and brought a lot

of stress in my life thinking that this great idea that could help so many

children and families around the world would be ruined.

I am just one person with a vision and a mission. I am a person that feels

constantly heartbroken when I see the dreams of so many families chattered. I

am one person that gets humbled and brings tears down my eyes when I see so many

people willing to help the cause, because they know this medical epidemic which

people call " Autism " and they believe in their hearts that together we can

change the world. My dream is that using studies like the ones published by

s Hopkins Medicine and by the Nobel Prize winner Capecchi and building

an Autism medical disease registry with 1000, 5000 or even 10000 entries showing

that children with " Autism " suffer from Immune System Dysfunction will give all

these children and their families an undeniable voice. If we can build this

medical disease registry who will be able to deny that autism is a set of

symptoms caused by a medical illness? There are many people out there with

loved ones affected by " Autism " that can really help the cause. Politicians,

attorneys, doctors, scientists, people in the media, advertising, CEOs of large

companies, etc... If all of us contribute to build this medical disease

registry we can together easily get our entry pass to The White House. If we

can build the medical disease registry we can probably get the folks at s

Hopkins and the Nobel Prize Winner Capecchi to represent us when we go to

the White House and meet with The President. If we can build the medical

disease registry the media will fight over getting our story published. Just

think about it and this is a plan that can 100% be achieved in a short period of

time.

Nobel winner ties mental illness to immune defect

By Nobel Prize-winning University of Utah geneticist Capecchi

http://esciencenews.com/articles/2010/05/27/nobel.winner.ties.mental.illness.imm\

une.defect

Brain’s Immune System Triggered in Autism

By s Hopkins Medicine

http://www.hopkinsmedicine.org/Press_releases/2004/11_15a_04.html

I don't want to make any money out of this, I just want the satisfaction that we

our efforts we can change the world. I believe in the Stop Calling It Autism!’s

mission 100% and I am committed to it and know there are many people out there

that are willing to dedicate their lives for this noble cause.

I have been reaching many other groups of people, DAN, etc... I have been

showing them how Autism is caused by an immune system dysfunction and we can

prove it by running blood tests. They are so excited about it because they have

never seen this side of autism before and how it explains it all. If we talk

about medical treatment protocols and we start comparing vs DAN vs Amy

Yasko vs homeopathy vs many treatments out there all its going to do is cause

controversy and it will continue dividing all of us. The Stop Calling It

Autism! nonprofit organization wants to create unity because we believe unity

will give us the strength we need to accomplish our goals. It doesn't matter

what medical protocol is used to treat autism, we all agree that our children

are medically ill. We have to use what we all agree on and build on top of

that. We all in this list knows that even though is great we still don't

have the right immune modulating agents to help all children get better the same

way. Stop Calling It Autism! wants to build a strong foundation and create the

sense of urgency that this medical epidemic deserves.

The new members of the board of directors are great in my opinion. Myself you

know who I am, my wife which is a great mother and wife and a woman that I

deeply admire. She also suffered together with me, we cried together, one day I

would have to give comfort and the next three days she would have to give me

comfort. We've been together since the moment our son was born, we

enjoyed all the precious moments like when he started smiling, playing, talking

and interacting like any other healthy child and when suffered together when he

regressed until becoming severely autistic. She also has been there during the

past three years while I spent endless hours at night doing medical research to

find out what happened to . She has been very patient and has always been

there to take care of me. She has been there every day during 's

recovery and she is still here and will be for the rest of our lives now that

looks almost like if never suffered from autism. You have seen videos so

you know what I am talking about. My sister is a great human being, has an

amazing heart, her feelings are just in the right place. She is also a

brilliant human being and she is waaaaaay smarter than I am and she has a

masters degree in business administration which she finished with almost 4.0

GPA. And best of all we work great as a team and our goal is to empower as many

people out there to believe they can make a positive difference in this world

which is the most honest truth I can give all of you.

You are all welcome to help Stop Calling It Autism! help change the world for so

many great families around the globe. We are a team and as a team we can end

this medical epidemic.

Regards,

Founder and President of Stop Calling It Autism!

’s Story – Stop Calling It Autism!

http://www.stopcallingitautism.net

randy.191@...; ;

stopcallingitautism

From: hindssite@...

Date: Thu, 17 Jun 2010 11:34:22 -0700

Subject: Dan vs. Nids

Hi ,

You asked about the difference between the Dan Protocol and Dr. Goldberg.

The following is my opinion and not that of SCIA. The original answer I

tried to post at " The Stop Calling It Autism " list was censored by the

moderator, . He said, " Championing a protocol is against the SCIA! list

rules. " But it is important to say that although may not work for all

kids, it worked for my son. I worked hard for SCIA and still believe in the

premise of the organization. However, my board position and the other

members of the SCIA board were terminated by without any notification

to any of us. He replaced Kathy on, Bill Klimas and me with his

wife, sister and himself. As a result, I am no longer a member of the SCIA

organization.

Now to answer your question of DAN vs.. When my son was little, I

started with Sidney Baker who is the primary author of the Dan protocol.

Although he helped my son, he did not take things to the degree that

does. He gave us many unnecessary supplements. At first I thought they

were helping and kept taking some of them, but eventually I realized

they were not doing anything and stopped them. Megadoses of anything can be

dangerous.

Dr. Baker thought that autism was a result of a leaky gut. Dr. G he

believes that the gut problem is a secondary result of a bigger issue, an

immune system that fires when it shouldn't and sometimes doesn't work when

it should. Dr. Goldberg uses proven scientific methods of treating

children.

Our children all have something in common. Their immune systems are not

functioning properly. Kids like my son, , have shown that if

their medical problems can be corrected, they can lead normal lives. The

medications my son is taking help his immune system to function.

Unfortunately, these interventions are not yet a cure. If I stopped his

medications, he could regress. But his successful treatment and the

treatment of others like him have shown that the physicians are correct

in their theories.

Autistic children like my son are proving they are individuals with normal

or above normal intelligence. Unfortunately, they are often

thought of as kids that cannot be helped. Unfortunately, each child with

is different. What works for one might not work for

another. Although similarities exist, each child with autism may have

different medical problems. Extensive lab work needs to be done to

determine what is not working in each individual. The Northern New York

Autism Clinic, Dr. Goldberg and Dr. in Texas are the only ones I

know of that use the protocol.

My kid made it, is in college and has a wonderful life, but there are too

many children with autism that never will. Some parents have

given up hope of ever helping their children. I want them to know that our

kids can get better. The interventions both medically and behaviorally were

not an instant " cure " and are not for any family who is not willing to work

unlimited hours. We worked at this twenty-four hours a day. No one other

than a parent can be that obsessive and stubborn about continuing when

sometimes there were no signs that my son was getting better. The hardest

part was to keep going. When he was little I really didn't believe he would

ever be " normal. " His behavior was so bizarre. Even though I thought he

would never be okay, I did many things so I wouldn't have guilt later. I

wanted to be able to say I did everything possible to make my child better.

In the beginning, it was how to tell which medical interventions were

working. How can you tell if medicine is working when your child has limited

verbal ability? It takes almost three years for a " normal " child to learn

language. Even if someone could wave a magic wand made my child's body

normal, he still wouldn't have been normal or had instant language. He

spent too many years not speaking, not learning what he should, and learning

weird behaviors that helped him survive this hell. It took many years to

reteach him. I know my son would not be okay if we had not found Dr.

Goldberg.

Hope this helps,

Marcia

[Guest guest]

Good luck on your quest but may I correct you. Both Kathy and I said we could

not be involved if your goals were to diagnose and advise treatment protocols.

You do not have the knowledge nor the MD to afford you that privilege. There are

thousands of manifestations of this illness and I would not standby while you

made broad statements and recommendations to desperate parent that had the

potential adversely effect their children. Much of what you state in this email

was developed by conversations and efforts made by Marcia and Kathy. It is their

credibility that you are enjoying. I wish you well but as thousands of non

profits have found out, Tread lightly when you live in a glass house.

Bill

From: <jrodrig6605@...>

Subject: RE: Dan vs. Nids

nids , randy.191@...,

stopcallingitautism

Date: Friday, June 18, 2010, 6:39 AM

Dear Marcia,

You know we all love you for the great person you are, because all of you have

done to help so many people over the years.  We love and we are so proud

of everything he has accomplished in his life, we all also wish him the greatest

success anybody could ever have.

It is true that Kathy on, Bill Klimas and you are an exceptional group of

individuals, but we couldn't pull it together as a team.  Bill and Kathy just

don't have the time needed to launch and make Stop Calling It Autism! a

successful organization.  Kathy told me that she doesn't believe that building

a medical disease registry would not work after she said that she want to

joining SCIA.  Bill Klimas told us multiple times that he would quit every

single time we didn’t agree on something.  You told me that we should write

down in the SCIA's rules that you could fire me from the organization if things

didn’t go as planned.  I am a newcomer representing the new generation of

parents affected by autism and I brought a great idea to the table and I

couldn’t believe my ears when you said that to me.  All I did and I have all

the records of it is to make things work and be a mediator to make everybody

happy.  I worked endlessly for over a

month and half trying to make things work.  Bill and Kathy even treated me

mean and I have emails to prove it.  It really saddened me and brought a lot of

stress in my life thinking that this great idea that could help so many children

and families around the world would be ruined.

I am just one person with a vision and a mission.  I am a person that feels

constantly heartbroken when I see the dreams of so many families chattered.  I

am one person that gets humbled and brings tears down my eyes when I see so many

people willing to help the cause, because they know this medical epidemic which

people call " Autism " and they believe in their hearts that together we can

change the world.  My dream is that using studies like the ones published by

s Hopkins Medicine and by the Nobel Prize winner Capecchi and building

an Autism medical disease registry with 1000, 5000 or even 10000 entries showing

that children with " Autism " suffer from Immune System Dysfunction will give all

these children and their families an undeniable voice.  If we can build this

medical disease registry who will be able to deny that autism is a set of

symptoms caused by a medical illness?  There are many people out there with

loved ones affected by

" Autism " that can really help the cause.  Politicians, attorneys, doctors,

scientists, people in the media, advertising, CEOs of large companies, etc... 

If all of us contribute to build this medical disease registry we can together

easily get our entry pass to The White House.  If we can build the medical

disease registry we can probably get the folks at s Hopkins and the Nobel

Prize Winner Capecchi to represent us when we go to the White House and

meet with The President.  If we can build the medical disease registry the

media will fight over getting our story published.  Just think about it and

this is a plan that can 100% be achieved in a short period of time. 

Nobel winner ties mental illness to immune defect

By Nobel Prize-winning University of Utah geneticist Capecchi

http://esciencenews.com/articles/2010/05/27/nobel.winner.ties.mental.illness.imm\

une.defect

Brain’s Immune System Triggered in Autism

By s Hopkins Medicine

http://www.hopkinsmedicine.org/Press_releases/2004/11_15a_04.html

I don't want to make any money out of this, I just want the satisfaction that we

our efforts we can change the world.  I believe in the Stop Calling It

Autism!’s mission 100% and I am committed to it and know there are many people

out there that are willing to dedicate their lives for this noble cause. 

I have been reaching many other groups of people, DAN, etc... I have been

showing them how Autism is caused by an immune system dysfunction and we can

prove it by running blood tests.  They are so excited about it because they

have never seen this side of autism before and how it explains it all.  If we

talk about medical treatment protocols and we start comparing vs DAN vs Amy

Yasko vs homeopathy vs many treatments out there all its going to do is cause

controversy and it will continue dividing all of us.  The Stop Calling It

Autism! nonprofit organization wants to create unity because we believe unity

will give us the strength we need to accomplish our goals.  It doesn't matter

what medical protocol is used to treat autism, we all agree that our children

are medically ill.  We have to use what we all agree on and build on top of

that.  We all in this list knows that even though is great we still don't

have the right immune modulating

agents to help all children get better the same way.  Stop Calling It Autism!

wants to build a strong foundation and create the sense of urgency that this

medical epidemic deserves.

The new members of the board of directors are great in my opinion.  Myself you

know who I am, my wife which is a great mother and wife and a woman that I

deeply admire.  She also suffered together with me, we cried together, one day

I would have to give comfort and the next three days she would have to give me

comfort.  We've been together since the moment our son was born, we

enjoyed all the precious moments like when he started smiling, playing, talking

and interacting like any other healthy child and when suffered together when he

regressed until becoming severely autistic.  She also has been there during the

past three years while I spent endless hours at night doing medical research to

find out what happened to .  She has been very patient and has always

been there to take care of me.   She has been there every day during 's

recovery and she is still here and will be for the rest of our lives now that

looks almost

like if never suffered from autism.  You have seen videos so you know what I

am talking about.  My sister is a great human being, has an amazing heart, her

feelings are just in the right place.  She is also a brilliant human being and

she is waaaaaay smarter than I am and she has a masters degree in business

administration which she finished with almost 4.0 GPA.  And best of all we work

great as a team and our goal is to empower as many people out there to believe

they can make a positive difference in this world which is the most honest truth

I can give all of you.

You are all welcome to help Stop Calling It Autism! help change the world for so

many great families around the globe.  We are a team and as a team we can end

this medical epidemic.

Regards,

Founder and President of Stop Calling It Autism!

’s Story – Stop Calling It Autism!

http://www.stopcallingitautism.net

randy.191@...; ;

stopcallingitautism

From: hindssite@...

Date: Thu, 17 Jun 2010 11:34:22 -0700

Subject: Dan vs. Nids

 

Hi ,

You asked about the difference between the Dan Protocol and Dr. Goldberg.

The following is my opinion and not that of SCIA. The original answer I

tried to post at " The Stop Calling It Autism " list was censored by the

moderator, . He said, " Championing a protocol is against the SCIA! list

rules. " But it is important to say that although may not work for all

kids, it worked for my son. I worked hard for SCIA and still believe in the

premise of the organization. However, my board position and the other

members of the SCIA board were terminated by without any notification

to any of us. He replaced Kathy on, Bill Klimas and me with his

wife, sister and himself. As a result, I am no longer a member of the SCIA

organization.

Now to answer your question of DAN vs.. When my son was little, I

started with Sidney Baker who is the primary author of the Dan protocol.

Although he helped my son, he did not take things to the degree that

does. He gave us many unnecessary supplements. At first I thought they

were helping and kept taking some of them, but eventually I realized

they were not doing anything and stopped them. Megadoses of anything can be

dangerous.

Dr. Baker thought that autism was a result of a leaky gut. Dr. G he

believes that the gut problem is a secondary result of a bigger issue, an

immune system that fires when it shouldn't and sometimes doesn't work when

it should. Dr. Goldberg uses proven scientific methods of treating

children.

Our children all have something in common. Their immune systems are not

functioning properly. Kids like my son, , have shown that if

their medical problems can be corrected, they can lead normal lives. The

medications my son is taking help his immune system to function.

Unfortunately, these interventions are not yet a cure. If I stopped his

medications, he could regress. But his successful treatment and the

treatment of others like him have shown that the physicians are correct

in their theories.

Autistic children like my son are proving they are individuals with normal

or above normal intelligence. Unfortunately, they are often

thought of as kids that cannot be helped. Unfortunately, each child with

is different. What works for one might not work for

another. Although similarities exist, each child with autism may have

different medical problems. Extensive lab work needs to be done to

determine what is not working in each individual. The Northern New York

Autism Clinic, Dr. Goldberg and Dr. in Texas are the only ones I

know of that use the protocol.

My kid made it, is in college and has a wonderful life, but there are too

many children with autism that never will. Some parents have

given up hope of ever helping their children. I want them to know that our

kids can get better. The interventions both medically and behaviorally were

not an instant " cure " and are not for any family who is not willing to work

unlimited hours. We worked at this twenty-four hours a day. No one other

than a parent can be that obsessive and stubborn about continuing when

sometimes there were no signs that my son was getting better. The hardest

part was to keep going. When he was little I really didn't believe he would

ever be " normal. " His behavior was so bizarre. Even though I thought he

would never be okay, I did many things so I wouldn't have guilt later. I

wanted to be able to say I did everything possible to make my child better.

In the beginning, it was how to tell which medical interventions were

working. How can you tell if medicine is working when your child has limited

verbal ability? It takes almost three years for a " normal " child to learn

language. Even if someone could wave a magic wand made my child's body

normal, he still wouldn't have been normal or had instant language. He

spent too many years not speaking, not learning what he should, and learning

weird behaviors that helped him survive this hell. It took many years to

reteach him. I know my son would not be okay if we had not found Dr.

Goldberg.

Hope this helps,

Marcia

[Guest guest]

Hi Marcia:

You are such an inspiration!

Just wondering if after Dr G does the initial testing and records review, if

there are some kids that he does not feel are a fit for his protocol (e.g.,

those with negative viral labs)?

Also, do you know if Dr G starts his protocol if there is a specific point

(either via symptoms or labs) that he can tell if it is working?

[Guest guest]

Hey ,

Dr. Goldberg takes them if he thinks he can help them. All kids can

improve. However, not all recover. Like said in an earlier post, "

Autism is still a very difficult medical condition to overcome and if all

the right answers were out there, perhaps all the children would be as

successful as the few that are " normal " or totally indistinguishable from

their peers. " But the only way you will know is if you try. And at least

maybe your child will no longer be in pain from all the things that are

physically wrong with him.

There are some parents who work tirelessly who have kids who have immune

systems that are just too messed up for full recovery. Then there are

others who do the medical and help their children's bodies recover. But

then they don't do the rehabilitation behaviorally or educationally that is

needed to catch their kids up on what they missed while they were sick. Much

work needs to be done for a child to fully recover.

In all honesty, I never believed mine could get better. He was just too

strange. However, I just wanted no guilt if I had to place him in a group

home one day after I got old. The Jewish guilt turned out to be a great

thing, now my kid has a wonderful life and a bright future.

The way we knew the protocol was working was he improved. In addition,

there was hard science to show he was better. His labs eventually

normalized and when we repeated the spect scan at an older age the blood

flow to the damaged areas of his brain were much improved. But it took

years for him to get sick and years to get better.

It was not always an uphill climb. I just talked to a mom today who was

beside herself because her kid seemed to be going backwards. I remember

those days. It is ten steps forward and three steps back. Sometimes kids

who stop developing at age two pick up where they left off. And a 6 year

old doing the same things a two year old does appears more autistic than

before treatment. But they aren't, they actually are getting better. It

may not look that way because they are much more difficult to manage. When

they were checked out from the world they were easy, but when they start

having tantrums because they actually care about the things around them it

looks like they are getting worse. But are they? This is not an instant

cure or an easy fix and definitely not for sissies.

I hope for your child's sake you don't wait for guarantees before you do

what is needed to help him. And if you need me just to have someone to

listen I will be here. I know how difficult living with this nightmare is,

but jump in. It is our only hope.

Marcia

[Guest guest]

I have been working with the NNY Autism Center for almost 2 years now...we had

to take an " allergy detour " but I still consider them the overseers of my

daughter's recovery. That being said, I see both sides of this.

I know so many parents I have tried to talk to about autism recovery, and they

don't follow through. But in their defense, many parents spend lots of time,

money, and energy on the DAN stuff (and that is the most well known approach)

and it doesn't work for most parents. To me, working with a DAN doc is like

putting on a blindfold and shooting a target, they are everywhere, " its metals!

toxins! vitamin deficiency! etc. "

If I had never heard of , I doubt I would have ever tried a DAN doctor. Too

many chances to take, no real promise of results. Parents are jaded with all of

the bad " science " out there, or they are just burnt out and tired of the

disappointment that usually comes with it. You have to do autism recovery

right, and do everything at the same time. Thats how it works and DAN docs

don't do that. If we could just show these parents how many kids actually get

better on maybe they would have more confidence in this approach and take a

chance on it.

I will probably get beat up for my anti-DAN sentiments but please don't try to

talk me out of it. My daughter went from a 63 on her ATEC to a 9. I would like

her to be to a 0 someday. But for now, the difference in her is astounding.

My .02

>

> Hey ,

>

>

>

> Dr. Goldberg takes them if he thinks he can help them. All kids can

> improve. However, not all recover. Like said in an earlier post, "

> Autism is still a very difficult medical condition to overcome and if all

> the right answers were out there, perhaps all the children would be as

> successful as the few that are " normal " or totally indistinguishable from

> their peers. " But the only way you will know is if you try. And at least

> maybe your child will no longer be in pain from all the things that are

> physically wrong with him.

>

>

>

> There are some parents who work tirelessly who have kids who have immune

> systems that are just too messed up for full recovery. Then there are

> others who do the medical and help their children's bodies recover. But

> then they don't do the rehabilitation behaviorally or educationally that is

> needed to catch their kids up on what they missed while they were sick. Much

> work needs to be done for a child to fully recover.

>

>

>

> In all honesty, I never believed mine could get better. He was just too

> strange. However, I just wanted no guilt if I had to place him in a group

> home one day after I got old. The Jewish guilt turned out to be a great

> thing, now my kid has a wonderful life and a bright future.

>

>

>

> The way we knew the protocol was working was he improved. In addition,

> there was hard science to show he was better. His labs eventually

> normalized and when we repeated the spect scan at an older age the blood

> flow to the damaged areas of his brain were much improved. But it took

> years for him to get sick and years to get better.

>

>

>

> It was not always an uphill climb. I just talked to a mom today who was

> beside herself because her kid seemed to be going backwards. I remember

> those days. It is ten steps forward and three steps back. Sometimes kids

> who stop developing at age two pick up where they left off. And a 6 year

> old doing the same things a two year old does appears more autistic than

> before treatment. But they aren't, they actually are getting better. It

> may not look that way because they are much more difficult to manage. When

> they were checked out from the world they were easy, but when they start

> having tantrums because they actually care about the things around them it

> looks like they are getting worse. But are they? This is not an instant

> cure or an easy fix and definitely not for sissies.

>

>

>

> I hope for your child's sake you don't wait for guarantees before you do

> what is needed to help him. And if you need me just to have someone to

> listen I will be here. I know how difficult living with this nightmare is,

> but jump in. It is our only hope.

>

> Marcia

>

>

>

>

[Guest guest]

Hi Marcia.

 

Can I ask you something, at what age for your son did you start feeling

comfortable and

felt like he was some day going to recover?

 

My son is 11 and been on the protocol for 8 years.  Also, I have been doing

everything in terms of catch up, ABA, floortime, speech and development work,

helping him with reading, reading fluency, catching up in math, social skills

classes, karate, and getting him a lot of

exercise. We went to Dr. Fosnot and Dr. Silton.  I found Dr. Fosnot to be very

helpful.

 

Sorry to go on and on.  I saw your post on 10 steps forward and 3 steps back

and maybe wanted to get an idea of how things went with someone that has already

been there.  The problem with my son is he has times during the year where he

starts going

back to some weird behavior (staring at things at angles) or picking up

something new.

The lastest I had to explain to him he could not leak on the floor

(unfortunately we have a dog that does, sorry for that bit of info).  He

thought it was funny to pretend to be the dog and sometimes despite my

explaining, doesn't seem to mind . Sometimes he gets in a state where he doesn't

mind consequences such as going to bed early, losing the WII, etc.

 

I am so tired at this point & figured I would ask. Thanks for any insight.

 

Lynn 

From: and Marcia Hinds <hindssite@...>

Subject: Re: Dan vs. Nids

cmarnett2@...,

Date: Monday, June 21, 2010, 11:13 PM

 

Hey ,

Dr. Goldberg takes them if he thinks he can help them. All kids can

improve. However, not all recover. Like said in an earlier post, "

Autism is still a very difficult medical condition to overcome and if all

the right answers were out there, perhaps all the children would be as

successful as the few that are " normal " or totally indistinguishable from

their peers. " But the only way you will know is if you try. And at least

maybe your child will no longer be in pain from all the things that are

physically wrong with him.

There are some parents who work tirelessly who have kids who have immune

systems that are just too messed up for full recovery. Then there are

others who do the medical and help their children's bodies recover. But

then they don't do the rehabilitation behaviorally or educationally that is

needed to catch their kids up on what they missed while they were sick. Much

work needs to be done for a child to fully recover.

In all honesty, I never believed mine could get better. He was just too

strange. However, I just wanted no guilt if I had to place him in a group

home one day after I got old. The Jewish guilt turned out to be a great

thing, now my kid has a wonderful life and a bright future.

The way we knew the protocol was working was he improved. In addition,

there was hard science to show he was better. His labs eventually

normalized and when we repeated the spect scan at an older age the blood

flow to the damaged areas of his brain were much improved. But it took

years for him to get sick and years to get better.

It was not always an uphill climb. I just talked to a mom today who was

beside herself because her kid seemed to be going backwards. I remember

those days. It is ten steps forward and three steps back. Sometimes kids

who stop developing at age two pick up where they left off. And a 6 year

old doing the same things a two year old does appears more autistic than

before treatment. But they aren't, they actually are getting better. It

may not look that way because they are much more difficult to manage. When

they were checked out from the world they were easy, but when they start

having tantrums because they actually care about the things around them it

looks like they are getting worse. But are they? This is not an instant

cure or an easy fix and definitely not for sissies.

I hope for your child's sake you don't wait for guarantees before you do

what is needed to help him. And if you need me just to have someone to

listen I will be here. I know how difficult living with this nightmare is,

but jump in. It is our only hope.

Marcia

[Guest guest]

Hi Lynn, With all this positive reinforcement lately of me emailing and not

lurking, I guess I better comment before my day gets busy :}I can help a little

to answer your question and Marcia can probably fill in too. First don't get

discourage. The part you need to keep reminding yourself about is " normal " brain

development/behavior in peers is also very erratic - you are just seeing a

bigger pendulum swing.

Think about kids/relatives you know where it seemed over a summer, the kid

" matured " .Teachers see this all the time. I see it with my other kids. You have

a few years to go, age 11 is no where near mature and your kid will always have

a noticable " developmental gap " compared with peers because peers too are

developmenting at a phenominal rate. It is like trying to catch up with a

speeding train, when the train slows down you will be able to catch up :} Where

this development starts leveling off and you start closing the gap at a more

noticable rate is in high school. Girls are more mature, very adult like- boys

too:} Not to be flippant but even a group of average men " digress " back light

years when put in the same room together.Think football season:} Anyway, it

really is 10 steps forward and 3 steps back and some really embarassing

situations. Sometimes I felt my kids did something that just came out of no

where " What WERE THEY THINKING! " . Just don't accept trashy behavior. I rode my

witches's broom stick until my butt had calluses :} One parent said something to

me a few years ago when I was trying to explain autism and the dad's comment

really struck me. They had a 12 year boy who was in advanced placement classes-

2 or 3 years ahead academically. Of course, I was in the opposite situation :}

The dad he made the observation that we were really in the same situation but

opposite. My issues were really not that different than what he was facing

putting his boy in classes with older/mature kids. In some ways putting our kids

in peer classrooms is like putting a 12 year old on a college campus. Ypu rson

in learning, pushing bpundaries, and experimentingHope that helps!

>

>

> From: and Marcia Hinds <hindssite@...>

> Subject: Re: Dan vs. Nids

> cmarnett2@...,

> Date: Monday, June 21, 2010, 11:13 PM

>

>

>  

>

>

>

> Hey ,

>

> Dr. Goldberg takes them if he thinks he can help them. All kids can

> improve. However, not all recover. Like said in an earlier post, "

> Autism is still a very difficult medical condition to overcome and if all

> the right answers were out there, perhaps all the children would be as

> successful as the few that are " normal " or totally indistinguishable from

> their peers. " But the only way you will know is if you try. And at least

> maybe your child will no longer be in pain from all the things that are

> physically wrong with him.

>

> There are some parents who work tirelessly who have kids who have immune

> systems that are just too messed up for full recovery. Then there are

> others who do the medical and help their children's bodies recover. But

> then they don't do the rehabilitation behaviorally or educationally that is

> needed to catch their kids up on what they missed while they were sick. Much

> work needs to be done for a child to fully recover.

>

> In all honesty, I never believed mine could get better. He was just too

> strange. However, I just wanted no guilt if I had to place him in a group

> home one day after I got old. The Jewish guilt turned out to be a great

> thing, now my kid has a wonderful life and a bright future.

>

> The way we knew the protocol was working was he improved. In addition,

> there was hard science to show he was better. His labs eventually

> normalized and when we repeated the spect scan at an older age the blood

> flow to the damaged areas of his brain were much improved. But it took

> years for him to get sick and years to get better.

>

> It was not always an uphill climb. I just talked to a mom today who was

> beside herself because her kid seemed to be going backwards. I remember

> those days. It is ten steps forward and three steps back. Sometimes kids

> who stop developing at age two pick up where they left off. And a 6 year

> old doing the same things a two year old does appears more autistic than

> before treatment. But they aren't, they actually are getting better. It

> may not look that way because they are much more difficult to manage. When

> they were checked out from the world they were easy, but when they start

> having tantrums because they actually care about the things around them it

> looks like they are getting worse. But are they? This is not an instant

> cure or an easy fix and definitely not for sissies.

>

> I hope for your child's sake you don't wait for guarantees before you do

> what is needed to help him. And if you need me just to have someone to

> listen I will be here. I know how difficult living with this nightmare is,

> but jump in. It is our only hope.

>

> Marcia

>

>

[Guest guest]

Lynn,

My daughter is 21 and while she started allergy treatment at 5 months and

started with Dr. Rapp at 4 years she did not start until almost 11 and she

made very erratic progress. She is in a subgroup (small subgroup based upon my

experience with our clinic patients) that is hard to treat. This winter I

started thinking that she MIGHT finally be in a good place and along came pollen

season with a resultant mild, but still obvious, regression. It does beat

totally losing all progress and starting all over with the first Frost, which

happened for four years in a row when she was younger. The next hurdle is

ragweed and if she can get through that with only a mild (none would be better!)

regression then I expect next year she should get through both seasons really

well. All of the kids in her subgroup in our clinic are making progress also. So

take heart!

I know that when you are in the midst of the situation it is hard to be

objective and looking at other children who are recovering doesn't always make

things easier. There are subgroups of children and some need more than others.

There are also kids, and I think the most recent study was a figure of 10% and I

don't believe that anyway, that have a spontaneous remission (those are the kids

of the parents who write the books about their " cured " five year olds) . Reading

those books or posts by those parents wasn't always really helpful to me. There

is so much research going on, there are going to be more tools to use, things

really are looking up in the whole field. Your child is not " old " . I think we

can all be optimistic.

Sincerely,

Kathy on

Re: Dan vs. Nids

cmarnett2@...,

Date: Monday, June 21, 2010, 11:13 PM

Hey ,

Dr. Goldberg takes them if he thinks he can help them. All kids can

improve. However, not all recover. Like said in an earlier post, "

Autism is still a very difficult medical condition to overcome and if all

the right answers were out there, perhaps all the children would be as

successful as the few that are " normal " or totally indistinguishable from

their peers. " But the only way you will know is if you try. And at least

maybe your child will no longer be in pain from all the things that are

physically wrong with him.

There are some parents who work tirelessly who have kids who have immune

systems that are just too messed up for full recovery. Then there are

others who do the medical and help their children's bodies recover. But

then they don't do the rehabilitation behaviorally or educationally that is

needed to catch their kids up on what they missed while they were sick. Much

work needs to be done for a child to fully recover.

In all honesty, I never believed mine could get better. He was just too

strange. However, I just wanted no guilt if I had to place him in a group

home one day after I got old. The Jewish guilt turned out to be a great

thing, now my kid has a wonderful life and a bright future.

The way we knew the protocol was working was he improved. In addition,

there was hard science to show he was better. His labs eventually

normalized and when we repeated the spect scan at an older age the blood

flow to the damaged areas of his brain were much improved. But it took

years for him to get sick and years to get better.

It was not always an uphill climb. I just talked to a mom today who was

beside herself because her kid seemed to be going backwards. I remember

those days. It is ten steps forward and three steps back. Sometimes kids

who stop developing at age two pick up where they left off. And a 6 year

old doing the same things a two year old does appears more autistic than

before treatment. But they aren't, they actually are getting better. It

may not look that way because they are much more difficult to manage. When

they were checked out from the world they were easy, but when they start

having tantrums because they actually care about the things around them it

looks like they are getting worse. But are they? This is not an instant

cure or an easy fix and definitely not for sissies.

I hope for your child's sake you don't wait for guarantees before you do

what is needed to help him. And if you need me just to have someone to

listen I will be here. I know how difficult living with this nightmare is,

but jump in. It is our only hope.

Marcia