Re: :-( (from a 2 year observer of many boards)...

June 7, 2006

I agree with this. If we took the ego out of so many treatments and

protocols, we would find and create a lot more success stories.

I am on many boards and there are recovery stories from many different

treatments. (Not as many as you'd like and maybe not always total

recovery, but substantial improvement in terms of how these kids

operate. And, of course there are many who don't improve sufficiently

unfortunately..)

My impression is different things work for different people -- I

personally don't feel it is a one size fits all. Yes, I think most of

the boards will agree that it is immune dysregulation, but the issue is

how did it start and how do you treat?

In my humble opinion after reading this board off an on for over two

years -- the biggest " issue " here is that when newbies ask questions

about another protocol or treatment, they get dismissed so quickly.

ly, I think many of you should spend time on other boards and

decide for yourself if you think some of these other ideas might be

something to consider. Maybe you won't change a thing, but maybe you

will see that a portion of kids improve with aba alone or low oxalate

diet or transdermal LDN or m-b 12 shots or chelation or whatever it

is. And, maybe you will believe as I do, that there is a lot of good

and a LOT OF HOOEY. But it is eye opening to learn about what appears

to work for some kids. In the end, you are the PARENT and you need to

make the best informed judgement you can

For me, I have come to trust parents the most about what is happening

to their kids. And, I find hearing the discussions and debates

valuable.

Sorry if this was too long!

Best

>

> >

> > If we continue to achieve our goals, then what will set us apart

> is that the doctor who is having great results with a MB-12 child

will

> talk with the doctor who is having great results with a child --

> no more ego-driven protocols, leaving the parents torn between doctor

> loyalty and loyalty to their child. This is what our parent advisory

> board desires, an thus far we have doctors who are listening. It

> gives us all hope.

> >

> > -

>

> ,

> This is my dream as well!

> Kristie

>

June 8, 2006

Hi ,

I think you are making a huge assumption that people on this board do not

follow other " related " lists. However, if parents have found what they truly

believe is the answer for their children and it is working, why bother?

Most here are VERY informed parents and have made a clear decision to follow

Dr. Goldberg's protocol, after careful and painstaking research into other

biological interventions. There is no closed mindedness, only a firm belief

in what we have chosen for our children. However, it is really important

to restate, as someone (Donna I believe?) did recently, that is not a

focus on " Autism " , but on immune dysregulation. While there are many

ailments that umbrellas, autistic symptoms are only one of them. The

focus here is the immune system as a whole and not just certain aspects of

the the body or brain. Gut issues, retaining heavy metals, hyper or hypo

brain profusion, high or low B12 can be affected if the body's immune system

is not functioning properly. The immune system affects every aspect of the

body from how it metabolizes food to how it fights disease...the foundation

to our bodies health, if I could put it as simply as possible. Once this

system misfires, anything can happen, including neuro/auto immune diseases

such as asthma, cancer, MS, Lupus and yes, SYMPTOMS of Autism, ADD/ADHD and

so on. This is the focus of this list and while you chastise us for not

answering newbies questions as thoroughly as perhaps you would like, you

have to be reminded that we could spend our entire day answering the same

questions, day after day, week after week and not move on to where many of

our kids are now and the success we have seen through Dr. G's work.

Essentially we have been there in these discussions...chelation, B12, gut

issues, etc... again and again and again. It is all there in the archives

for anyone who wants to read the COUNTLESS discussions we have had on these

subjects. We are not dismissive, we are just tired of focusing on something

that isn't part of what this discussion board is about. We all have sick

children. Pushed over the edge of good health that every child is entitled

to by viruses, allergies, bacterias to name a few.

The immune system is a complicated, misunderstood aspect of the human body

and not a quick or easy fix. There are no magic wands that will cure our

children quickly. We know that and we support each other through the 3

steps forward 1 step backward process that we all often go through in our

quest for healthy children. One size doesn't fit all and no one involved

with thinks that. Each child is assessed individually. All " triggers "

that may be firing that child's immune system are removed and medications

are provided for the goal of a homeostatic immune system. Once this is

achieved, the body can do amazing things. Dr. Goldberg has been doing this

specifically for 20 years and is entitled to have an ego with regard to

treating his patients. If he didn't and ran with every flavour of the month

treatment, than I am certain that my son would not be recovered today. If a

doctor believes in what he is doing and has the science and clinical success

to back it up, then he should have an ego. What else would drive their

success?

Many parents here are no longer searching as we have found what we know is

working for our children and what makes sense medically. We are not

treating the symptoms, we are treating the cause. I think many of us are

grateful that above all our children are healthier. They have a future and

it is brighter because we have trusted Dr. Goldberg and are so very, very

glad that he had enough of an ego, or rather believed in himself and his

work, to persevere when others though he was crazy.

I wish you luck in your quest. Clearly you haven't found what you need to

find. It is a tough road, but positive support is here for those who want

it. Think of the whole picture and not just the small individual parts,

therein lies alot of confusion for many folks.

HTH,

Lori