Re: Indiana Goldberg patients?

December 30, 2000

Hi ,

I'm from Grand Rapids, Michigan, and my son has been a patient of Dr.

Goldberg's since August 1999. I searched for a doctor in the Midwest but

could not locate one. We decided to visit Dr. Goldberg because our son

fit the profile of .

Our son is doing remarkable, considering where he started. We don't feel it

is solely due to Dr. Goldberg, because has had a combination of

several different interventions long before we started going to Dr.

Goldberg, and long before we got the ASD label. But we know he has helped!

For example, two months after we got back from our visit to Dr. Goldberg,

's private speech pathologist held a session with him. She had been on

a two month summer break and the last time she saw him was right before we

left for California. She looked at me about 30 minutes in to his session

dumbfounded! She said that she had never seen such an incredible change in

a child's behavior in her 17 years of working with autistic children.

Hope this information helps! Where in Indiana are you from? Kris

Indiana Goldberg patients?

Hi, I am from Indiana and I am considering contacting Dr. Goldbergsoffice

for new patient information, is there anyone from Indiana onthis list that

has used a doctor here in Indiana or surroundingstates, that was willing to

follow the protocol? I am stillresearching, so any help would be

greatly appreciated. Thanks inAdvance.

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

December 31, 2000

Dear :

There are about 6 of us in the Livonia, MI area with Dr. G. I have been

with him the longest with my daughter Meg (May 1999) and we have seen good

to great progress. We also have had her well-supported for the last five

years (heavy speech, OT/SI, home program, private regular schools with

parapro, behavior program and now also listening therapy). The rest of the

families have seen progress at different levels. I think lots of factors

come into play. First, how big a piece of the puzzle is the viral/immune

connection for your child. Then, how well supported is the child, the age

of the child, consistency and level of support, etc... Personally, I have

never ever had a doctor who was this supportive of my child. We have been

through a lot in the last 19 months. We are still tweaking the medicine

which kills me every time we get to a really good point, we keep changing

things. Goldberg compares this to a light bulb. He asked me if my daughter

was 100 watt. I said, no, closer to 80 watt. He then said we had to keep

tweaking the meds for her benefit and to always aim for 100%. My brain

agrees with him, but it is always hard to do. I must say we have just had

the best Christmas ever. She counted down the days until Santa and for the

first time greeted all the cousins and aunts and uncles she usually sees

only once a year. My brother-in-law and sister-in-law almost cried when

they saw her. They couldn't believe it. We have probably seen the greatest

progress in the last three months. We are not there. We have a ways to go

and we are continually looking for other pieces of her puzzle. (The

listening therapy has been great for awareness.)

Anyway, I started out to ask if anyone in the Grand Rapids area would come

down here to see Dr. Goldberg. There are about four to five new families

who want to see him and asked if I could find more families who would be

interested. So, anyone in your neck of the woods interested? Let me know

how your son is doing. I have a friend in Carmel, IN who is with Dr. G. and

her son is making progress, but still not talking a lot. Very frustrating!

Boy, I sure hope this Peptide T comes out soon and can do some great stuff.

We shall see. Always good to hear from someone in Michigan with Dr. G.

Ginger

(P.S. We have insurance coverage from Partnership Health through Ford Motor

Co. Our pediatrician (who is an extremely conservative U of M Grad who also

holds a PhD in immunology) was totally blown away by Goldberg's protocol.

He thought he was a snake oil salesman until he saw the bloodwork results

after 18 months on the medicine and her viral levels were all down. He then

got on the telephone to talk to Dr. G. - amazing. Then, he talked to the

people at Partnership Health and told them that he did not want to stop

anything that was helping her progress. How's that for conservative-speak.

Anyway, right now they are covering the meds, bloodwork and the telephone

conferences. AMAZING!!)

Indiana Goldberg patients?

>

> Hi, I am from Indiana and I am considering contacting Dr. Goldbergsoffice

> for new patient information, is there anyone from Indiana onthis list that

> has used a doctor here in Indiana or surroundingstates, that was willing

to

> follow the protocol? I am stillresearching, so any help would be

> greatly appreciated. Thanks inAdvance.

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

January 1, 2001

> Hi ,

>

> I'm from Grand Rapids, Michigan, and my son has been a patient of Dr.

> Goldberg's since August 1999. I searched for a doctor in the Midwest but

> could not locate one. We decided to visit Dr. Goldberg because our son

> fit the profile of .

>

> Our son is doing remarkable, considering where he started. We don't feel it

> is solely due to Dr. Goldberg, because has had a combination of

> several different interventions long before we started going to Dr.

> Goldberg, and long before we got the ASD label. But we know he has helped!

> For example, two months after we got back from our visit to Dr. Goldberg,

> 's private speech pathologist held a session with him. She had been on

> a two month summer break and the last time she saw him was right before we

> left for California. She looked at me about 30 minutes in to his session

> dumbfounded! She said that she had never seen such an incredible change in

> a child's behavior in her 17 years of working with autistic children.

>

> Hope this information helps! Where in Indiana are you from? Kris

> Indiana Goldberg patients?

>

> Hi, I am from Indiana and I am considering contacting Dr. Goldbergsoffice

> for new patient information, is there anyone from Indiana onthis list that

> has used a doctor here in Indiana or surroundingstates, that was willing to

> follow the protocol? I am stillresearching, so any help would be

> greatly appreciated. Thanks inAdvance.

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

Hi, thanks for replying and sharing your stories, I live about an hour north of

Indianapolis, so far everything that I have heard is encouraging, I will

probably move forward with plans to call Dr. Goldbergs office this week. (my

child is mostly non verbal after regressing at 15 months.) He is 5 now. He has

had 2 years of ABA, along with speech, OT and Preschool. HAPPY NEW YEAR!

January 1, 2001

Hi Ginger,

It was neat to read your post. If you don't mind, how old is your child??

My son has been a patient since March of last year and is 4. We are in the

Chicago area. Since we are considered the Midwest I thought I would reply.

My son has also made progress, yet is not talking as yet. He is just

starting to imitate vowel sounds and using them for different words

appropriately. We are currently on Kutapressin, Valtrex and Diflucan. We

also have a home program going and will probably try the auditory integration

therapy next. There are so many peices to the puzzle. Thanks Ginger.

Sincerely, Kathleen

January 2, 2001

Dear Kathleen:

I have tried to post you privately and I just can't get it to go, so, with

apologies to all, here is a long post. Is there another way to e-mail you

privately?

Hi there! My daughter is now 7 1/2. We started Goldberg's protocol

in May of 1999. She currently is on Valtrex, Diflucan, Kutapressin, Zoloft

(although I think Prozac is better for her) and Claritin and Nasacort for

allergies. We have been on the up and down freeway with meds. I like that

Dr. G does go slowly. We have tried both Famvir (lost all her language) and

Valtrex. We have now tried all the SSRI's. We have taken her off Diflucan

for 10 weeks (went to Amphoteracin and lost her again. The last three

months we have seen the most progress. I have to give her school a lot of

credit for going through this with us. It is very hard to explain why we

have to keep changing her meds. They love that we are super supportive of

Meg and know how hard we have worked to get this far (regular school, good

math skills, working on reading, social skills emerging). We have also been

blessed with an absolute marvel of a speech teacher since she was 2 and a

half and also a great OT.

We tried AIT about three years ago. My honest opinion is that her body was

not ready for it. Now that we have three solid years of OT/SI for her, we

decided to try the listening therapy. It seems a lot more targeted. The

first EASE CD was for calmness, the second for bi-lateral coordination and

the third has been the best for her awareness (spatial awareness). I would

not have thought she would have had such a reaction to just listening to

CDs. This program was put together by Sheila Frick, an OT (her company is

Vital Sounds) and combines the theory of AIT with Samonas listening

technique. The first week she could not handle being in the lunch room and

would race out when clean-up time started. I think her hearing was

heightened and it physically hurt her to stay in the lunchroom. She now can

handle that and easily responds to questions across the room or when she is

inside a room on her computer I can get her to come out and see what I want

when I call her. The sensory integration (SI) that she has gotten I feel

has opened her body to this therapy. This may sound kind of weird, but AIT

did nothing for her. She was so irritated by everything until we started

SI, I don't think anything would have helped her. This therapy is a lot

more user-friendly, too. She listens to 1/2 hour in the morning and 1/2

hour after school (mostly in the car when we drive to therapy!). Also, I

think this therapy is a bridge to other good stuff, not a cure-all.

Man, it seems like we just keep adding and adding to the picture. This is

great for Meg, but a full-time job for me. We have two other great kids

(ages 9 and 5) and this can't go on forever. For now, we are seeing very

good results. We still have to correct her behaviorally. She gets sillier

now and will push even harder not to do her homework, not shut down the

computer when it is time for bed, etc. This is not like before when she had

tantrum after tantrum for years. This is because she is smarter, more aware

and acting more like her age. Of course, we are slightly worn out from

years of this. We are grateful for the help from Dr. G. It is amazing that

once you have crossed that line and accept that your child's condition is

not originally a developmental problem, but really a medical problem that

became a developmental problem you can't see it any other way. It is hard

to get other people to see this. We just went to the Emergency Room to get

a cast on Meg's left arm (first time, crashed on the trampoline) and I gave

them a list of the meds that she was on. I did not describe her as

autistic, but as a kid. They had never heard of it and were very

interested. Now, I bet that if I had simply described her as autistic with

all these meds, they would have thought I was a desperate parent grasping at

straws and what a nut case I was -- she is autistic and that's that. Too

bad what they really think. I know the truth. Her alpha-interferon was 220

and it was supposed to be under 50. Her HHVG was in the 40-60 range with

below 10 being normal. Now her both are close to normal levels.

2001 is Meg's year! We have tried to put everything in place. She has

shown us time and time again how strong she is and that she is not a

quitter. This year she really has to step up to the plate. This is not for

us, but for her. For her to be truly accepted in her peer group she MUST

learn to be social right now. Not a moment sooner. I don't care if she

doesn't do that great academically (which is not her problem), but I want

her to have FRIENDS. She has lost too much time. This is truly her time.