Re: scared - success stories?

[Guest guest]

Kathy - I'm also one of the frustrated parents whose daughter's progress with

Dr. G is very slow. You mentioned some success stories - it would be great if

those could be shared so we could get a little encouragement!

Thanks,

[Guest guest]

Is your little girl Sonja? I think our Church prayed for her. For our

appointment in NYC in Jan. I took our local clinic's clinical director so

that she could observe Dr. G. She saw all of the kids for 2 days and saw

nothing but success stories BUT she saw only follow ups and kids who had been

going to him for a long time. I have been reviewing the tapes from the

conference and other things in order to set up the first clinic in NY.

You have to think about how much normal activity should have gone on in the

brain of the developing child and didn't, then you have to think about

undoing the damage that did occur. As much as I would also like a magic

bullet that would make normal so that we could have a little child hood

before she becomes a teenager I just don't think it will happen. I do expect

that eventually she will be vastly improved but it will take time. I suspect

as Dr. G has better drugs to work with progress may be much faster. The

immune system is so complicated. I expect being an expert on one cytokine is

probably an accomplishment. I am spending my " free " time on fund raising for

MAT so that we can make those drugs available soon! Kathy

[Guest guest]

Hi Kathy - yes, I'm Sonja's mom and I do appreciate your thoughts and

prayers. You're probably right about progress being so slow, but it's still

very frustrating. Dr. G is not the best communicator, and I would like to

read as many of his success stories as I could, so I know what to expect.

Thanks,

[Guest guest]

I have posted our success story before on here, and won't give this time. I

posted earlier some information on Goldberg's treatment. We feel his help has

been THE single best contribution we have received.

We also tried every therapy there was over aperiod of 2 years. We finally

settled on following what the Koegel's in santa Barbara recommend, along with

a healthy mix of Dr. Greenspan's philosophy and practices. Our son was was

diagnosed at 2 as " moderate to severe autistic " . About 2 yrs. ago (age 4) he

began to change dramatically. (see my previous post regarding Kutapressin).

He is now 6 1/2, and has been attending school by himself with no problems.

No one has any idea there was ever a severe problem-you couldnt tell other

than his speech isn't just right.(he didnt talk until about age 4).

Our son is as good as it can get. So, for the people who want reassurance

that it can work out, we are proof. And to the person who mentioned something

like " theese kids may get better but they dont seem to GET IT socially " , our

son has gotten better and better and there is very little he doesnt get. You

have to keep in mind he basically missed a good 2-2 1/2 yrs of life.

Don't give up-it can and does work. Believe me there were many times I would

have settled for a child who would grow up and simply get through life with a

minimum of direct assistance. Now there is no question he will go on to be

just like everyone else. He is already way ahead of everyone in the class

academically, but he is also the happiest, most well liked, social child you

would ever want to see.

It can happen!

[Guest guest]

I have been immersed in Goldberg's tapes in order to set up our program for

here. The things that I have concluded is that every child is treated

uniquely because even though the blood work shows obvious and definite

patterns children don't react the same. We look at these kids behaviors and

judge progress by that because they are not good communicators and can't

explain how they are feeling. Thinking about that, it is how we feel that

makes us judge whether we are sick or not. It may be that your little lumpkin

is beginning to feel better but how is she going to tell you that? When you

have a child who regressed as much as your Sonja has then you have to measure

your progress in millimeters not inches for the first year. All of the before

and after stories that Dr. G presented were kids that were very autistic but

made great progress but we are talking 2-3 years. I think that Dr. G says

3-4. You will see progress but not as quickly as you want. It will happen! I

think that progress will be more rapid if we can get the Peptide-T in the

drug arsenal. We all have to raise money to do this! Kathy

[Guest guest]

Thank you for sharing. I forwarded your comments to about 10 parents who have

not yet made the leap to the concept. You may feel that you are

repeating but hearing an inspirational account is always going to give

someone a boost! Thanks again! Kathy

[Guest guest]

Kathy

Is there any published or online research on Peptide T for immune dysfunction?

Kate

[Guest guest]

Peptide-T was developed at NIH (I think) a few years ago for HIV. All of the

information available on it is on HIV which is why it needs to be studied for

. I just listened to Dr. Galpins presentation from the conference

and if the drug does what they expect it to do I'll be first in line with my

kid! Dr. Galpin is very well known for his work on HIV and if it weren't for

HIV we would not know what we know about the immune system. So even the cloud

of HIV has a silver lining. Amazing! I can't remember if I went into the

Grateful Med to see if I could find any articles or not. I'm going to check

with a friend who is an HIV specialist and see what she has. Kathy