Re: Severity of children recovering

[Guest guest]

,

Our son is ten and a half years old and has been seeing Dr. Goldberg since

he was 5 years old. He's a straight A student in a regular classroom with no

academic accommodations. That's today.

Turn back the clock seven years ago when he was first diagnosed and he was a

child that was hyperlexic (could read but didn't know how to communicate

with people). Words were for oral reading; grunts and pointing were for

people. We were told at the time of his initial diagnosis that they really

didn't " know " what he had but that whatever it was they'd know better by age

five and that we might have to prepare ourselves for institutionalizing our

child. His scores on the intial tests they did were like 2%. In other words,

it didn't appear that he had much " up there " .

HA!!!!!! How wrong they were! Today, after MUCH intervention and hard work

on his part, he is a very expressive child who largely acts, thinks, and

speaks like his fifth grade regular-ed peers, excels at school, and has big

plans for his future. In truth, I don't think he's a " typical " fifth grader;

he is exceptional in the sense that his abilities far outpace his peers and

at times, that takes a toll on him socially. ly, he enjoys his

classmates and is liked by them in return but he doesn't need them socially

in a way that most fifth graders rely on their buddies. He is extremely

self-reliant, albeit to a fault.

So, in sum, his journey has been long but fruitful. He quite conversant,

knowledgeable, and aware of others. Still, his need for peer relationships

is less than most fifth graders experience. Surprisingly, his peers are

genuinely fond of him and enjoy working with him. And he enjoys them as

well! He often is a mentor and tutor to other peers. It's an amazing

contrast and a FAR CRY from the prognosis that we received at age three.

The lesson learned: if we hadn't " risked " defying what our local 'experts'

had told us and tried something that intuitively resonated with us about our

son, we'd be seeing a totally different person today and be facing more

painful decisions and choices than those we eagerly await with him. The

price of intervention may be high, but the price of avoiding the " risk " and

heeding the status quo is infinitely higher!

Best of luck to you!

Pat Koltun

Severity of children recovering

> Hi all,

> I am really curious about the severity of autism of the children

recovering

> using Dr. G's protocol. My son is severe. He does have language but most

is

> echoic. He stims constantly--though has improved some with Prozac--,

NEVER

> plays with toys--except to chew on them--, and has almost NO social

> interaction with other children. He is 7 years old and is in a special

ed.

> classroom. I guess what I am getting at is how many of the kids

recovering

> were severely affected and how many were high functioning and/or much

lower

> on the spectrum? Of course, any improvement makes visiting Dr. G and

> following his protocol worth the hassle. However, right now, we are in

such

> financial straits that I am just trying to figure out how I can possibly

> provide it. If it means my son will totally recover, then I will do

anything

> possible. Just trying to get a feel for our chances.

> Thanks,

>

>

>

>

[Guest guest]

Dear Pat:

I've been reading your post to , and I'm very interested in hearing

about your son. I've been to one conference where Dr. Goldberg spoke, and

talked about his protocol, but I've been lurking on this message board ever

since to read about the parents (and the children's) experiences.

Could you let me know what exactly was done for your boy? SSRI's,

anti-fungal, anti-bacterials, etc.? I'm just very curious about what is

often the " typical " protocol for these children, and if you saw Dr. Goldberg

directly, or if you live farther away and worked through another doctor.

Currently we live in the Sacramento area, but are preparing for a move to

Pittsburgh, PA, and will have to convince a doctor out there that the

protocol is " sound. "

Thanks for your help,

Kris

[Guest guest]

Dear Kris,

We live in Sacramento and I would be happy to speak with you about our

experience with Dr. G! We have been very happy and our son has progressed

tremendously since starting with him! E-mail me privatly or you can give me

a call at 916 739-8603! Good luck and call if you wish!

a

[Guest guest]

Kris,

Given that our son has seen Dr. Goldberg for over 5 years now, there

have been a number of changes in medications over that time. Let me give you

a brief synopsis of the approach. At the outset, we did not use any

medications right away. Rather, we focused for the first 3 to 6 months on

getting his diet in line with his known allergies (wheat, dairy, nuts,

chocolate...). Then we began gradually with a low dose of a SSRI, an

anti-fungal, and an anti-viral. Over the years, the meds have changed to

gauge which worked best. Today, we are on fewer meds than in earlier years

because his system has improved significantly.

While I can now appreciate the various changes and additions that were

made over time, I believe the most impactful medication for him was and

still is Kutapressin. Its effect was not immediate but within 6 to 8 weeks,

there was a distinct improvement in his focus, clarity of thought etc.

We have never lived in California. When we first began, we lived in

central Florida. Four years ago we moved to suburban Chicago. I can

appreciate the angst one experiences over the thought of finding a new

pediatrician but I always found it to be important to schedule an initial

discussion in advance of them seeing my child, discussing who my child is

and what our beliefs and values are regarding our child's health. This

initial discussion is truly more of an exploratory interview in which you

determine whether they are willing to cooperate/collaborate with the

protocol or not. I always think of our local pediatrician as the " tactical,

day-to-day needs " type of doctor versus Dr. G.'s role which is more of the

medical strategist. Both in Florida and Illinois, I found doctors who were

at least willing to ascribe to this tactical role and authorize/refer us to

see Dr. G. for insurance reasons.

Initially, none of these doctors were ever really sold on the protocol but

acknowledged our right as parents to do as we believe is in our child's best

interest. Our son's initial pediatrician in Florida was amazed at the

tremendous changes he saw in our child. " Amazing, simply amazing, " was his

reaction after reflecting on the substantial gains our son made in two years

time. Even though many of the therapists, teachers, and doctors haven't seen

our son in over four years, I don't think any of them would even recognize

him for the changes have been truly transformational!

I hope this information is helpful to you. I never regret any of the

sacrifices we made on our son's behalf to follow this protocol. None of

it is easy or convenient. But then again, most worthwhile things aren't!

Good luck to you!

Pat Koltun

Re: Severity of children recovering

> Dear Pat:

>

> I've been reading your post to , and I'm very interested in hearing

> about your son. I've been to one conference where Dr. Goldberg spoke, and

> talked about his protocol, but I've been lurking on this message board

ever

> since to read about the parents (and the children's) experiences.

>

> Could you let me know what exactly was done for your boy? SSRI's,

> anti-fungal, anti-bacterials, etc.? I'm just very curious about what is

> often the " typical " protocol for these children, and if you saw Dr.

Goldberg

> directly, or if you live farther away and worked through another doctor.

> Currently we live in the Sacramento area, but are preparing for a move to

> Pittsburgh, PA, and will have to convince a doctor out there that the

> protocol is " sound. "

>

> Thanks for your help,

>

> Kris

>

>

>