Re: Is recovery really true

[Guest guest]

Hello,

While I am very impressed with the stories of recovery... I find it hard to

get excited because it is the same few stories. Don't get me wrong I am

envious of those stories. I battle with the hope that someday I may have a

story. However after a year on Dr. G. protocol my son is going through a real

rough patch. Therefore, it is hard for me to feel warm and fuzzy when there

are

only a very few with good news. I keep hearing how there are so many I just

don't see it. Living with , Autism, PDD, MDF whatever you want to call

it stinks! There are thousands of other protocols some very similar to

with a few variations. How can they all be wrong? How can researching every

possible avenue be wrong?

Yes,...the government should be set up to protect us (we hope). Yes, it is

important to stay informed and ask questions and expect work from our

government. However, I think it would be safe to say there are thousands if

not

hundred of thousands of groups who want something done for them. Probably with

good reason. Where will all the money come from? When do we realize that we

live in the best place on earth? That we have more given to us then any other

place regardless of what side of the political fence you sit. It is

important for people to feel passion about their views. That is what really

turns

things around. Lately I must say this site has become a source of

grandstanding and feel good stories and no real information. I want

information to help

my son. I want a reason to stay on this protocol.

Dr. G is a man with a great deal of knowledge. I know he is right about the

immune factor. I stay for that hope... I realize that other protocols may

have so many people and such long waiting list because they are just the

flavor of the month...but I also realize that they may have so many members

because the tone of the conversations and the information given.

Someone replied that not talking about the problems in politics will not

make them go away. True! However complaining with no real plan will not make

them go away either.

Bottom line I want help for my son. Obtaining information and getting the

word out about the immune factor as well as researching every avenue will

help. I am willing to do anything for my children. I am only willing to

follow

ONE with total blind faith. After that I want proof. Dr. G told me at our

last phone consult that some of the things my son was doing were proof that

his brain needs rebooting. It made sense. This site lately has not been

giving me that same feeling.

[Guest guest]

,

I must say that I totally relate to what you are saying (and complaining

about). My name is Michele and I have a daughter, nearly 13, on the

protocol w/ Dr. Goldberg, CA.

I have been listening to a lot of success stories and although it always

brings joy of tears to my eyes, I wonder if there is just something I am NOT

doing or doing incorrectly. But that just may not be the case. Obviously,

some are more severe.

Since I was a single mom for her 1st 10 or so years, I have that guilt too

of having to work a lot to pay rent, etc... knowing my support system needed

revamping... my hands usually tied, etc. etc. And we began (at age 7),

she was placed in an emotionally and physically abusive setting for over a

year, in which I only learned about the last month of school. And this still

did NOT stop her from progressing.

But the reason I chose to respond to you, , is that I know I am doing

the right thing. Even after nearly 7 years of being on the - Dr.

Goldberg, I am still seeing progress and yes, there is more progress I am

anticipating seeing.

But to put in a nutshell - where she was and where she is: She made no

eye-contact, tantrum in physical discomfort for hours at a time, no interest in

learning, computer, educational toys, etc...

And now her eye-contact is phenomenal, she is no longer in pain

(except-illness), she laughs and smiles and shows never-ending affection and

love by

cuddling, hugging, kissing, she is totally toilet-trained and tells us 24/7

when

she needs to go. She is on the computer at 1st, 2nd grade levels of math.

Her reading is more K , 1st grade. She wants to learn, she loves to be

praised. Her receptive language is at a 8 or 9 year old, while her expressive

is

at a 4 year old.

Her articulation needs great work, and we have extensive catching up still,

but this is progress! And progress is progress. And yes, we still are

taking steps backwards at times, but try to focus on the steps forward.

We must focus on the fact that we are all great parents. We found and

we found DR. Goldberg and we must give ourselves CREDIT for this!

And through all these years her progress has been due to , certainly not

education when you sit back and look at the FACTS and the education she was

receiving. I believe once that brain starting functioning better; it was

just a matter of time before she STARTED retaining, etc. and this is what is

occurring. Lindsey is 13, not the youngest patient by any means, but I am

still seeing progress and this is what keep me going !!!

Now, that she is more eager than ever to learn, we are pushing her a bit.

The private school she attends are still doing discrete trials after all the

conferences, etc I had. She just needs to be treated academically at the

level she is at and move from there. But I had no luck with schools/therapists

to see it my way. Only private people, and me, which is why she is still

progressing. Schools and our experiences are a book I must write one day. I

can go on forever here.

So I end with a pick me up and " keep head high " and perhaps you can purchase

the DVD from Tupelo, MISS and really get a solid understanding as to what

your child REALLY has.

Thanks for listening,

Michele

[Guest guest]

,

In about 3 month, we will be with Dr. Goldberg for 3 years. We

started when my Son was more than 9 years old. The first year was

very tough. HE was not stable, Every time as we see some improvement,

he started to regress. The second year, We start to see him acting

normal about two weeks at a time, but we lose his quickly when he

catch cold. He seems never had so many cold to catch that year. This

school yesr was tough to start. He could not seat down to do any

thing for more than two minutes. At the time, Dr. G was considering

Prozac, and Celexa because I reported to him that although he did

well over the summer, but he was dull while he was on prozac. I tell

you I will never say that again. After increase the dosage, he fall

sleep in school which was never happed before. So Dr. want to try

Celexa. I keep telling him I do not like Celexa, and want to stay on

Prozac on lower dose. Of cause I did what Dr. G told me to do any

way. I stick with it for about 2 month, and finialy Dr. G changed it.

and added Straterra, has been doing well since. He is

responsive, aware. But He still very Asperger as how he thinks and

sees the world, and behave under totally different rule, but this is

more behavior than medical.

I can really see your frastraion, because I was so worried about him

over the summer after two years, and Dr. G keep wanting me to try out

Celexa, and Tenex seems do very liitle after a while. But after brain

scan, and added strattera, after switch back to Przac. I can only

tell you I feel much better now. He need to stay steable, and makeing

improvement on his behavior.

will say to you stick with it for 2 or three year, and let Dr. know

how you feel with med, and give him your imput. It will get better.

You may start see it in the second year.

If I am remember it correctly, some other list members had simular

experence.

Jin

>

> Hello,

>

> While I am very impressed with the stories of recovery... I find it

hard to

> get excited because it is the same few stories. Don't get me

wrong I am

> envious of those stories. I battle with the hope that someday I

may have a

> story. However after a year on Dr. G. protocol my son is going

through a real

> rough patch. Therefore, it is hard for me to feel warm and fuzzy

when there are

> only a very few with good news. I keep hearing how there are so

many I just

> don't see it. Living with , Autism, PDD, MDF whatever you

want to call

> it stinks! There are thousands of other protocols some very

similar to

> with a few variations. How can they all be wrong? How can

researching every

> possible avenue be wrong?

>

> Yes,...the government should be set up to protect us (we hope).

Yes, it is

> important to stay informed and ask questions and expect work from

our

> government. However, I think it would be safe to say there are

thousands if not

> hundred of thousands of groups who want something done for them.

Probably with

> good reason. Where will all the money come from? When do we

realize that we

> live in the best place on earth? That we have more given to us

then any other

> place regardless of what side of the political fence you sit. It

is

> important for people to feel passion about their views. That is

what really turns

> things around. Lately I must say this site has become a source of

> grandstanding and feel good stories and no real information. I

want information to help

> my son. I want a reason to stay on this protocol.

>

> Dr. G is a man with a great deal of knowledge. I know he is right

about the

> immune factor. I stay for that hope... I realize that other

protocols may

> have so many people and such long waiting list because they are

just the

> flavor of the month...but I also realize that they may have so

many members

> because the tone of the conversations and the information given.

>

> Someone replied that not talking about the problems in politics

will not

> make them go away. True! However complaining with no real plan

will not make

> them go away either.

>

> Bottom line I want help for my son. Obtaining information and

getting the

> word out about the immune factor as well as researching every

avenue will

> help. I am willing to do anything for my children. I am only

willing to follow

> ONE with total blind faith. After that I want proof. Dr. G told

me at our

> last phone consult that some of the things my son was doing were

proof that

> his brain needs rebooting. It made sense. This site lately has

not been

> giving me that same feeling.

>

>

>

>

>

[Guest guest]

Hi ,

I do feel your pain and frustration and have lived it as well. Many of us

with kids that are " recovered " or have made great improvements with the

protocol have almost all felt one step forward two steps backward at times.

My emotions would go up and down on a daily or weekly basis depending on how

my son was responding. I would stress every little thing and not look at the

whole picture. Once we would get through a rough patch and things were

better I would look back and wonder what I was so worked up about - he is

fine - and sure enough I would get all worked up again the next time my son

hit a rough patch. All along however through the good times and the bad

(and believe me there have been some dousies!), I held on to the hope that I

was on the right track. Each time I was down I trusted my instincts and I

listened to Dr. G and 99% of the time we were right. We live in a fast

paced world and want everything NOW. Healing a sick body - one that is so

sick that the brain is suffering - takes a long time. Try and look at

improvements that you have seen. Document what you can...it is easy to

forget how far our kids have come as we continually expect more and more

from them. I realize sometimes the rough patches are so all consuming that

you forget and become frightened that the good that you have seen isn't

going to come back. All I can say is hold on, lower your expectations and

offer as much comfort and understanding to your child as you can.

We went through a yeast kill off last winter the likes of which I have never

seen in my son. Through gross " freak outs " and episodes of really losing him

and not being able to reach him, I kept him home from school for 3 weeks! I

got work from the teacher, explained to the school that my son was sick -

they were all dumbfounded at his behaviour anyway - and kept him home where

he was safe and loved and not judged. There were some really dark days but

after a while I could see a clarity in him, a brightness at times and I knew

we would get through it. I also knew that if an antifungal was causing this

reaction, it must be doing something good somewhere way down deep, and we

just held on. We did get through our toughest time on the protocol 2.5

years after starting with Dr. G. Currently and since then, my son is doing

extremely well is all areas of his life, including social areas, and does

not " stand out " at all form his peers. People closest to us do not know he

has a " label " , nor do classmates or neighbours. I would not say he has

recovered but he is leaps and bounds better than he was. We are seeing

fewer periods of illness and /or regression. We watch his diet as that is

the biggest culprit for his off behaviour. He is a bright, outgoing, active

boy who is very social, very academic and very sweet, loving and

compassionate. His only area of " deficit " is that he does not have a " best

friend " . He does know everyone by name, plays independently with all his

friends, looks forward to recess so he can play with them, has lots of kids

come to his birthday party, but hasn't latched on to one kid yet. A deficit

or just his personality???? Time will tell. But we continue to hope and

continue to trust and hold on to him a bit tighter when he starts to take

one or two or even three of those very difficult, undesired steps backwards.

Hang on. No one said it was going to be smooth sailing.

Wishing you all the best,

Lori

Re: Re: Is recovery really true

Hello,

While I am very impressed with the stories of recovery... I find it hard

to

get excited because it is the same few stories. Don't get me wrong I am

envious of those stories. I battle with the hope that someday I may have

a

story. However after a year on Dr. G. protocol my son is going through a

real

rough patch. Therefore, it is hard for me to feel warm and fuzzy when

there are

only a very few with good news. I keep hearing how there are so many I

just

don't see it. Living with , Autism, PDD, MDF whatever you want to

call

it stinks! There are thousands of other protocols some very similar to

with a few variations. How can they all be wrong? How can researching

every

possible avenue be wrong?

Yes,...the government should be set up to protect us (we hope). Yes, it

is

important to stay informed and ask questions and expect work from our

government. However, I think it would be safe to say there are thousands

if not

hundred of thousands of groups who want something done for them. Probably

with

good reason. Where will all the money come from? When do we realize that

we

live in the best place on earth? That we have more given to us then any

other

place regardless of what side of the political fence you sit. It is

important for people to feel passion about their views. That is what

really turns

things around. Lately I must say this site has become a source of

grandstanding and feel good stories and no real information. I want

information to help

my son. I want a reason to stay on this protocol.

Dr. G is a man with a great deal of knowledge. I know he is right about

the

immune factor. I stay for that hope... I realize that other protocols

may

have so many people and such long waiting list because they are just the

flavor of the month...but I also realize that they may have so many

members

because the tone of the conversations and the information given.

Someone replied that not talking about the problems in politics will not

make them go away. True! However complaining with no real plan will not

make

them go away either.

Bottom line I want help for my son. Obtaining information and getting

the

word out about the immune factor as well as researching every avenue will

help. I am willing to do anything for my children. I am only willing to

follow

ONE with total blind faith. After that I want proof. Dr. G told me at

our

last phone consult that some of the things my son was doing were proof

that

his brain needs rebooting. It made sense. This site lately has not been

giving me that same feeling.

[Guest guest]

Does your son feel that he is missing a " best friend " ?

I think there are many kids out there that are

considered " normal " that do not have that. It may

happen with time or it may not. It sounds like your

son is doing really well!

--- Lori <lbharris@...> wrote:

> Hi ,

>

> I do feel your pain and frustration and have lived

> it as well. Many of us

> with kids that are " recovered " or have made great

> improvements with the

> protocol have almost all felt one step forward two

> steps backward at times.

> My emotions would go up and down on a daily or

> weekly basis depending on how

> my son was responding. I would stress every little

> thing and not look at the

> whole picture. Once we would get through a rough

> patch and things were

> better I would look back and wonder what I was so

> worked up about - he is

> fine - and sure enough I would get all worked up

> again the next time my son

> hit a rough patch. All along however through the

> good times and the bad

> (and believe me there have been some dousies!), I

> held on to the hope that I

> was on the right track. Each time I was down I

> trusted my instincts and I

> listened to Dr. G and 99% of the time we were right.

> We live in a fast

> paced world and want everything NOW. Healing a sick

> body - one that is so

> sick that the brain is suffering - takes a long

> time. Try and look at

> improvements that you have seen. Document what you

> can...it is easy to

> forget how far our kids have come as we continually

> expect more and more

> from them. I realize sometimes the rough patches

> are so all consuming that

> you forget and become frightened that the good that

> you have seen isn't

> going to come back. All I can say is hold on, lower

> your expectations and

> offer as much comfort and understanding to your

> child as you can.

>

> We went through a yeast kill off last winter the

> likes of which I have never

> seen in my son. Through gross " freak outs " and

> episodes of really losing him

> and not being able to reach him, I kept him home

> from school for 3 weeks! I

> got work from the teacher, explained to the school

> that my son was sick -

> they were all dumbfounded at his behaviour anyway -

> and kept him home where

> he was safe and loved and not judged. There were

> some really dark days but

> after a while I could see a clarity in him, a

> brightness at times and I knew

> we would get through it. I also knew that if an

> antifungal was causing this

> reaction, it must be doing something good somewhere

> way down deep, and we

> just held on. We did get through our toughest time

> on the protocol 2.5

> years after starting with Dr. G. Currently and

> since then, my son is doing

> extremely well is all areas of his life, including

> social areas, and does

> not " stand out " at all form his peers. People

> closest to us do not know he

> has a " label " , nor do classmates or neighbours. I

> would not say he has

> recovered but he is leaps and bounds better than he

> was. We are seeing

> fewer periods of illness and /or regression. We

> watch his diet as that is

> the biggest culprit for his off behaviour. He is a

> bright, outgoing, active

> boy who is very social, very academic and very

> sweet, loving and

> compassionate. His only area of " deficit " is that

> he does not have a " best

> friend " . He does know everyone by name, plays

> independently with all his

> friends, looks forward to recess so he can play with

> them, has lots of kids

> come to his birthday party, but hasn't latched on to

> one kid yet. A deficit

> or just his personality???? Time will tell. But we

> continue to hope and

> continue to trust and hold on to him a bit tighter

> when he starts to take

> one or two or even three of those very difficult,

> undesired steps backwards.

> Hang on. No one said it was going to be smooth

> sailing.

>

>

> Wishing you all the best,

>

> Lori

> Re: Re: Is recovery really true

>

>

> Hello,

>

> While I am very impressed with the stories of

> recovery... I find it hard

> to

> get excited because it is the same few stories.

> Don't get me wrong I am

> envious of those stories. I battle with the hope

> that someday I may have

> a

> story. However after a year on Dr. G. protocol my

> son is going through a

> real

> rough patch. Therefore, it is hard for me to feel

> warm and fuzzy when

> there are

> only a very few with good news. I keep hearing

> how there are so many I

> just

> don't see it. Living with , Autism, PDD, MDF

> whatever you want to

> call

> it stinks! There are thousands of other

> protocols some very similar to

>

> with a few variations. How can they all be

> wrong? How can researching

> every

> possible avenue be wrong?

>

> Yes,...the government should be set up to protect

> us (we hope). Yes, it

> is

> important to stay informed and ask questions and

> expect work from our

> government. However, I think it would be safe to

> say there are thousands

> if not

> hundred of thousands of groups who want something

> done for them. Probably

> with

> good reason. Where will all the money come from?

> When do we realize that

> we

> live in the best place on earth? That we have

> more given to us then any

> other

> place regardless of what side of the political

> fence you sit. It is

> important for people to feel passion about their

> views. That is what

> really turns

> things around. Lately I must say this site has

> become a source of

> grandstanding and feel good stories and no real

> information. I want

> information to help

> my son. I want a reason to stay on this

> protocol.

>

> Dr. G is a man with a great deal of knowledge. I

> know he is right about

> the

> immune factor. I stay for that hope... I realize

> that other protocols

> may

> have so many people and such long waiting list

> because they are just the

> flavor of the month...but I also realize that they

> may have so many

> members

> because the tone of the conversations and the

> information given.

>

> Someone replied that not talking about the

> problems in politics will not

> make them go away. True! However complaining

> with no real plan will not

> make

> them go away either.

>

> Bottom line I want help for my son. Obtaining

> information and getting

> the

> word out about the immune factor as well as

> researching every avenue will

> help. I am willing to do anything for my

> children. I am only willing to

> follow

> ONE with total blind faith. After that I want

> proof. Dr. G told me at

> our

>

=== message truncated ===

Barb Katsaros

barbkatsaros@...

__________________________________________

DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.

[Guest guest]

Lori,

Wow, that first sentence hit me so hard, that is EXACTLY how I am with my

girl. Everything she does is seen in only one way by me: do I put it on

Dr. G's update? I definitely need to take a few steps back. Thanks for

hitting me over the head! Any advice on how to do this???

>

>Unfortunately I

>have always said that once our kids get a dx or a " label " everything they do

>or say is put under a microscope. Sadly they rarely just get to " be "

>without some scrutiny or intervention.

[Guest guest]

Hi -

Don't feel too bad, we probably all or most do that at

least for a while. There does tend to come a point

where that tendency can ease up, once you relax and

she becomes more consistent.

The way I help is simply by getting in there and

playing with the purpose of making a connection, and

also taking videos, pictures,etc, trying to think of

things as in how cute they are. But basically, if you

resolve yourself to writing down something you see

that is making you " think about it " at the time you

are noticing, it can help you. Because if you write

something down, it allows you to release it from your

thoughts. Might take practice, but it's good therapy

to do for anything worrying you. And keep it real

brief. (Also good for problems sleeping due to

thinking about what you have to do).

--- and Daron Freedberg

<mdfreedberg@...> wrote:

>

> Lori,

> Wow, that first sentence hit me so hard, that is

> EXACTLY how I am with my

> girl. Everything she does is seen in only one way

> by me: do I put it on

> Dr. G's update? I definitely need to take a few

> steps back. Thanks for

> hitting me over the head! Any advice on how to do

> this???

>

>

> >

>

>

>

>

> >Unfortunately I

> >have always said that once our kids get a dx or a

> " label " everything they do

> >or say is put under a microscope. Sadly they

> rarely just get to " be "

> >without some scrutiny or intervention.

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________

DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.

[Guest guest]

,

Gee I wish I had some sage words of advice here. I think it is important to

step back and observe " other " kids with their noises, quirks and all...

Also document what you can so you can really remember how far she has come.

Remind yourself she is sick and often times can't help her behaviour. Hold

her a little tighter and count all the ways you are blessed with her in your

life. When there is a flare up, remember the cliche... " This too shall

pass " .

Best of luck,

Lori

RE: Re: Is recovery really true

Lori,

Wow, that first sentence hit me so hard, that is EXACTLY how I am with my

girl. Everything she does is seen in only one way by me: do I put it on

Dr. G's update? I definitely need to take a few steps back. Thanks for

hitting me over the head! Any advice on how to do this???

>

>Unfortunately I

>have always said that once our kids get a dx or a " label " everything they

do

>or say is put under a microscope. Sadly they rarely just get to " be "

>without some scrutiny or intervention.