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

[Guest guest]

I am new to the group and my daughter is newly diagnosed with autism. I have

been following several groups and I agree there are many different ways that are

working maybe some are not for others but none the less there are success

stories and they are amazing.

I think that often times we are quick to dismiss what we don't agree with or

think might help when in fact it may work for others.

I have seen this kind of thing in many groups not only autism groups but vision

impaired groups as well. To of my children are legally blind. I researched a

procedure called tetomy and after discussing it with my son who was then 12 we

decided to go ahead and have the procedure and it improved his vision a great

deal and made it more stable after surgery Zack told us that we should have our

daughters eye operated on as well and so we did. Her vision is much better as

well. Still I hear nearly daily how this is not something that should be done.

Sorry but it worked for my children it is a procedure that has been happening

for nearly 20 years and it is most effective and does not need to be repeated as

does strabusmus. Bottom line is that we all have to do what we feel is best for

our children. Some think one way and others another but in the end we all only

want what is best for our children and should stick together and instead of

jabbing at others state your

opinions in a non-judgmental way because more people are willing to listen if

you state fact and don't get all personally about things.

I chose the NODS way because I feel that it is the least invasive and it makes

since to me not to give my child a bunch of things that are unregulated however

that being said I would not be close minded to trying other options if this does

not provide the recovery that we are hoping for. One never knows what science

will bring us.

Sheri

mmkrem2003 <Mmkrem@...> wrote:

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

>

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