FW: Summary chapter for my book on Dr. Goldberg's treatment

[Guest guest]

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Try joining

Great info there. Dr. Goldberg and Dr. 's patients are on that list.

Sorry not to send an individual response but there are so many who need

help. Some of you asked questioned that might be answered by the chapter

from the book I'm writing about 's recovery. The following is the

summary of the chapter on finding Dr. Goldberg. Now all I need is a

publisher. Anyone know one?

I too was concerned about the long term effects of the medications and

SSRI's as you will soon read. But our kids are really sick and need to take

medications to get better. Without them they don't have a chance. Dr.

Goldberg requires blood tests every six weeks so he will catch any problems

from medications before they can do any damage to our kids. In sixteen years

we never had an irregular blood test that showed complications from

medications.

Life can be like a roller coaster.And just when you think you've had enough

and you're ready to get off the ride and take the calm, easy

merry-go-round.You change your mind, throw your hands in the air and ride

the roller coaster all over again. " ~ Stacey Charter

Chapter 9

Finally.A Doctor with a Plan

After all our searching and quack chasing, I was very discouraged. Wasn't

there anyone who could help us? I was exhausted, drained both physically

and emotionally. I didn't know how to end the nightmare we were living.

It seemed so hopeless. ( was better, but that only made me want more.)

That's when I read a letter in the Advocate ( " autism " Society of America

Magazine) by a mom who saw a doctor in California. Dr. Goldberg tested her

son for an active virus. A month after starting a drug used to treat his

virus; her child began speaking for the first time. According to this mom,

Dr. Goldberg helped her son medically and his speech started to improve by

leaps and bounds.

Side Bar - Bryce and Miler's Letter to the Advocate

Sept.- Oct. 1994 Newsletter of the " autism " Society of America, Inc.

THE ADVOCATE

Reminder to parents

My husband and I are the parents of a 3 year old son who was diagnosed

as " autistic " six months ago. We were told to see a well-known authority,

" the specialist of specialists " in this field. We saw her prepared for the

diagnosis of " autism " but not prepared for the information she would give

us. She stated that there was absolutely positively no cure for " autism "

and that it is useless to try and find one. When asked if it was possible

for our son to live a " normal " or even " semi-normal " life she said that he

would never be anything but " autistic " and that " autistic " people cannot

ever have what you and I would consider a normal life.

When we asked her about the Lovaas treatment [what ABA was called

before it was called ABA]she emphatically insisted that these children are

now a physiological disaster areas and that our son would be much worse if

put through behavior modification therapy. Her treatment plan for my son

was to put him in a " normal " preschool with " normal " children and all the

other therapies available will not show the results that inclusion in a

normal preschool would.

I have worked with many other doctors and therapists in the last six

months and none of them has been so blatantly insistent on her views being

" the only game in town. "

The purpose of this letter is to warn parents that treatment ideas are

not gospel.

We joined a parents group and heard from parents who adamantly

explained the dramatic results their children have experienced from behavior

modification therapy with absolutely no negative effects. Then and there we

decided to go with therapy based on the Lovaas program.

We now thank God every day for this therapy as my son may never be

cured, but has begun to do so many new things that we are sure he would not

be doing without this therapy. During that same meeting we were also given

the name of a pediatrician who was treating " autistic " children for food

allergies and other medical problems which has allowed the children to work

and think better. We thought my son might have allergies, so we saw Dr.

Goldberg who determined that my son was highly allergic to milk and

would later discover that he had a newly identified retro-virus which could

be causing the immune dysfunction that was apparent on other tests.

This virus had been found in other " autistic " children and could be

having negative effects on his brain. We were given a medicine to treat the

virus and within eight days my son spoke his first words. Dr. Goldberg's

ideas regarding the immune system and its role here are very encouraging,

although he is very careful to clarify that all he is trying to do is help

maximize the potential for these kids and that by alleviating some of the

medically treatable problems, these kids will be able to work and think

better. My son has changed so dramatically in a two month period with Dr.

Goldberg and the behavioral therapy that we have felt joy now comparable to

nothing else we can describe. We are not saying that he will be cured but

such dramatic progress is very encouraging to us.

We encourage parents to keep an open mind and not to listen to

professionals who insist that we would be much better off just accepting the

" autism " for what it is and not looking for a breakthrough that might allow

our children to have much better lives. I think most parents feel as we do

that it is not the problem of accepting our children as " autistic " , it is

the fact that we do not want to lay down and accept this life for our

children. We would love and cherish our child if he had no arms, no legs

and was " autistic "

on top of it, but we do have to desperately work to try and give our child

what we have-a nondisabled life or something close to it. Wouldn't we all

want someone fighting for us if we couldn't fight for ourselves?

Bryce and Miler

Simi Valley, CA

I'm not sure if I would have made an appointment to see Dr. Goldberg if we

weren't already traveling to California to see our family for Thanksgiving

(I had lost much respect for the medical profession by this time).

Fortunately, there was no waiting list to see him back then, and we got an

appointment. Dr. Goldberg started with extensive lab work to determine what

was not working in 's system. Since he billed the insurance company as

an immune problem rather than " autism " , the tests were covered by insurance.

Finally!!!

Dr. Goldberg is very scientific and methodical about how he treats this

disease. He moves slowly with only one change at a time so he can observe

what is working. Often this is not fast enough for crazy mothers. If we

have something that works, let's do it all right now, I thought. When my

impatience exploded during this appointment, Dr. Goldberg told me that

had been sick for a long time and it was going to take some time to make him

better.

Dr. Goldberg put us on a strong anti-fungal medication. He prescribed iron

supplements for . (Iron is extremely important to the function of brain

cells.) He treated his sinusitis. We also eliminated almost all milk

products again, whole wheat, and chocolate (because it contains milk). Dr.

Goldberg explained that " extreme diets " were not necessary or beneficial

overall.

After following all of Dr. Goldberg's recommendations, we saw another major

change in . He was more tuned in and we started having the beginnings

of conversations.

Next Dr. Goldberg prescribed an antiviral medication in addition to the

antifungal. was still too young to swallow pills. So we crushed them

up and mixed the medicine in a non-dairy frozen dessert, like sorbet or

Mocha Mix, and served them with a water chaser.

was doing great and I was starting to feel hopeful about his future

when Dr. Goldberg threw a wrench in the works. He wanted to start an

SSRI (Selective Serotonin Reuptake Inhibitor) medication like Prozac. I

promptly told him that we would not give those kinds of drugs. He

asked me if my child had diabetes, would I hesitate to give him insulin?

Dr. G calmly (very unlike him) explained that the Prozac was an extremely

low dose prescribed because it is an immune modulator and would improve

blood flow to the affected area of 's brain. I reluctantly agreed, but

that not the last of the many heated arguments we have had over the years.

Almost immediately after we started the SSRI, the teachers reported

tremendous changes. I hadn't told them about our visit to Dr. G. The

normal behaviors observed at home started to occur at school. I got very

positive reports. But it was not until I was the class helper did I realize

how much " more normal " was at school. The change was incredible! He

initiated and sustained various social encounters. I nearly cried when he

spontaneously said " Hi " to the librarian as he passed her in the hall.

If I Knew Then What I Know Now

Since we lived in Minnesota and Dr. G was in California, we had phone

appointments and the blood test results were faxed to Dr. G. I worried

about the effect all these medications would have on 's system. It

seemed unnatural to give such a young kid so many medicines. I shouldn't

have worried so much. The reason Dr. G makes us take blood tests every 4-6

weeks is to ensure he catches any problems the medicines might cause before

they do any damage. (In sixteen years there hasn't been a problem.)