Re: Re: Opinion on recent posts

[Guest guest]

I have been very happy over the three and a half years reading the posts

and following some very informative and interesting debates. I question myself

every day in terms of what I can be doing for my son and I know there are others

like me. I am glad that some have found their final resting place with and

have children who are recovered or almost recovered. I am the voice of a parent

with a child who is not recovered. He was never sick as a child, never had ear

infections or other ailments, and to this day has never been on antibiotics. He

was always a very healthy specimen except for a very " difficult to see " fine

rash on his trunk, legs and arms. And his bowels were mushy. But that's it. He

continues to be very healthy on outward appearance.

When we saw Dr. G our son was just two years, three months old. We were lucky to

catch it so early and start the protocol at such a young age. But at five years

and seven months, my son is still non-verbal (he has just started saying a few

words), is not toilet trained and is considered an early learner in an ABA

program that includes early, intermediate and advanced learners. It is not where

I thought we would be, but I know this can be a slow process and I have seen

some improvements I know have been directly related to the protocol so I am

holding fast. But I like to see other ideas come into the mix. For example,

information from this group makes me wonder if B-12 plays a larger role with my

son than others. His levels were through the roof at two years old and have

never been tested again. I have a B-12 absorption problem and have to get shots

so maybe there is something to that. I need to research all of that a little

more.

I have also enjoyed reading 's recent posts. She is such a fountain of

information on the many different approaches out there and I think some of the

questions she has raised are good, solid questions. It gives us a chance to

thoroughly think through what we do and defend our decision to follow the

protocol. If we can't answer tough questions from new posters, how can we defend

this protocol out in the bigger world? Practice makes perfect and answering

these questions can help. And, as someone said, it is reassuring to me to know

that many of these other protocols incorporate the concept of immune

dysfunction. It makes me feel more confident in the approach I have chosen.

All this to say that I hope we, as a collective, can encourage good, healthy

debate and welcome questions regarding the protocol. Some of us are more open to

questioning and considering what others are doing. Just because I am following a

thread on chelation or B-12 shots doesn't mean I'm jumping on board with those

protocols. I just want to know what else is going on out there so I'm not a

complete idiot when I'm talking to others who have seen a documentary or read an

article on the latest " flavor of the month " in terms of autism treatments and

want to ask me about it. (Thank goodness it's not that often -- I don't get out

much I'm afraid.)

As for " find another list to read about some of these things " -- well, I can't

keep up with the two lists I am on right now so that's not even an option! I

enjoy reading the various topics on the list and I hope those with

questions about the protocol or information about what else is going on out

there keep posting.

Rhoda

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

Hi Lori

Thanks so much for your thoughtful and detailed response to my email.

You're right - if parents have found what they are looking for, then

they shouldn't have to look any further. For instance, Lori I am

sincerely thrilled that your child is recovered! And there are a lot

of protocols that are out there that do not seem well researched and

people are jumping hopelessly on ill - conceived bandwagons.

But let me respond to a few things that you mentioned (and then I'll

stop responding to this and other email threads here, since I don't

want to waste your guys' time as you mentioned)

1) I will never quit learning and researching on any of these immune

issues and I think there are a lot of parents out there like this.

Since you read other lists, I hope that you see my points: there

are recoveries happening both here and there, and there can be things

to learn (even if its dismissing things occurring elsewhere). I

have caught a " good " bug in this process - a quest to optimize the

health and well being of my family. There are so many similarities

between a number of protocols (e.g. reducing viral loads, fungal

issues, etc) but I like to really understand them and hear what the

parents are saying. There are just different learning styles by

parents (just like in all the kids out there!)

2) I am not by any stretch saying that you should only fix the

symptoms and not the underlying cause. Or that there is a quick

fix. There are no easy roads here. But, my impression from this

board is that non-NIDs protocols can only be a quick fix or

harmful. For example, my understanding is that methyl b-12 can

help address methylation defects - that seems to be addressing a root

cause and fixing a key issue in the brain. When I see that other

kids start the b-12 and they start talking after being non-verbal,

that seems significant! And I want to learn more (to learn things

like: is it safe? Side effects? What studies?, etc) Or transdermal

low dose N (and not what was used on kids years ago) helps to address

underlying immune issues - that seems to be doing some of the things

Dr Goldberg is trying to address --only with a different mechanism.

I am precisely not recommending jumping at the flavor of the month

(in fact, I haven't tried these), but to be aware that science is

constantly evolving.

Once again, learning about the immune system is the way I see it.

Sorry to take up more of your time .

> >

> >

> > >

> > > 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

> >

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