Re: Thinking about going to Dr Goldberg

June 12, 2009

My child saw Dr. in NY and has been on since she September. She

just turned 4 years old and when we started she took the ATEC (Autism

Treatment Evaluation Checklist) and her score was 62. That is moderate autism.

I did the checklist again yesterday and her score was a 12. (the lower the

score the " less " autistic behaviors your child has.) In less than a year! My

daughter no longer has autistic behaviors but she does have the speech delay. I

know that takes time though.

HTH

>

> Im trying to figure out if my son fits the NiDS profile. I have been reading

both good progress and then no progress on the children. My son has only made

small gains with all I have done. I will be traveling from Ohio to see him. I

just feel the Dr's I have seen do not have a plan, it seems I am always asking

for things. I did watch the presentation and he does have most of the things he

stated( slient seizures, poor sleeper, fine and gross motor,, non verbal

sensory processing. I did have him allergy tested via blood and back prick and

all was negative. If people could post if their child made progess and no

progress and what they were like

>

June 12, 2009

> >

> > Im trying to figure out if my son fits the NiDS profile. I have been reading

both good progress and then no progress on the children. My son has only made

small gains with all I have done. I will be traveling from Ohio to see him. I

just feel the Dr's I have seen do not have a plan, it seems I am always asking

for things. I did watch the presentation and he does have most of the things he

stated( slient seizures, poor sleeper, fine and gross motor,, non verbal

sensory processing. I did have him allergy tested via blood and back prick and

all was negative. If people could post if their child made progess and no

progress and what they were like

> >

>

June 12, 2009

HI ,

That's awesome! You're right, the speech and socialization are the

last components it seems.

Argie

On Jun 12, 2009, at 2:15 PM, wrote:

>

> My child saw Dr. in NY and has been on since she

> September. She just turned 4 years old and when we started she

> took the ATEC (Autism Treatment Evaluation Checklist) and her score

> was 62. That is moderate autism. I did the checklist again yesterday

> and her score was a 12. (the lower the score the " less " autistic

> behaviors your child has.) In less than a year! My daughter no

> longer has autistic behaviors but she does have the speech delay. I

> know that takes time though.

>

> HTH

>

> >

> > Im trying to figure out if my son fits the NiDS profile. I have

> been reading both good progress and then no progress on the

> children. My son has only made small gains with all I have done. I

> will be traveling from Ohio to see him. I just feel the Dr's I have

> seen do not have a plan, it seems I am always asking for things. I

> did watch the presentation and he does have most of the things he

> stated( slient seizures, poor sleeper, fine and gross motor,, non

> verbal sensory processing. I did have him allergy tested via blood

> and back prick and all was negative. If people could post if their

> child made progess and no progress and what they were like

> >

>

June 12, 2009

Where is Dr. located in New York?

Re: Thinking about going to Dr Goldberg

My child saw Dr. in NY and has been on since she September. She

just turned 4 years old and when we started she took the ATEC (Autism

Treatment Evaluation Checklist) and her score was 62. That is moderate autism. I

did the checklist again yesterday and her score was a 12. (the lower the score

the " less " autistic behaviors your child has.) In less than a year! My daughter

no longer has autistic behaviors but she does have the speech delay. I know that

takes time though.

HTH

>

> Im trying to figure out if my son fits the NiDS profile. I have been reading

both good progress and then no progress on the children. My son has only made

small gains with all I have done. I will be traveling from Ohio to see him. I

just feel the Dr's I have seen do not have a plan, it seems I am always asking

for things. I did watch the presentation and he does have most of the things he

stated( slient seizures, poor sleeper, fine and gross motor,, non verbal sensory

processing. I did have him allergy tested via blood and back prick and all was

negative. If people could post if their child made progess and no progress and

what they were like

>

June 13, 2009

I posted the following in January 2008. I'll add an update at the end.

Here's our story:

My oldest son was born in July 1998. He reacted to the Hepatitis B vaccine given

in the hospital and he had to be re-hospitalized within 24 hours of bringing him

home. He had a low sucking reflex and I was unable to successfully breastfeed

him (and I was suffering from terrible PPD) so he was given milk-based formula

within the first few weeks.

He was always a fussy-up-half the night-every-few-hours baby. But he loved to be

held and made eye contact.

He had frequent ear infections and was on anti-biotics every few months the

first year of life.

About 8 months old he got the Roseola virus.

He walked at 10 months and hit all the physical milestones the first year but

never slept through the night.

He was never a big talker, only said " mama " and " bye-bye " and such a few times.

He'd scream until I would figure out what he wanted. He'd reach for things, but

not point.

After he was a year old he self-limited his diet to include mostly crunchy

and/or beige-yellow colored foods.

(If I knew then what I know now....)

At the time he was 18-24 months I was worried. He had dark circles around his

eyes and wouldn't interact with his cousins or kids at church.

We were living in an older rental house so I had him tested for lead poisoning

and vitamin deficiency since he was such a picky eater- negative. The doctor was

not worried because he showed love and affection and made eye contact with me.

She did give him an allergy medication.

At his 3-year check-up the doctor was worried. We were sent to a neurologist

(waste of time/money for us) and in August-Sept of 2001 he went through testing

and was labeled PDD-NOS. (9/11 for me was " autism " shock.)

I wasn't pleased with the neurologist.

Example-

Me: Will my son ever learn to read?

Dr.S: There is no telling what your child will or will not be able to do.

I started doing research on-line and read a LOT of books.

I changed his diet to the GFCF diet in October of 2001. He only asked for milk

the first day. I told him " Milk is bad for your tummy. It gives you a bad tummy

and a bad head. " End of story. The nighttime waking/screaming that had been a

part of our lives since the firs year of life stopped. He still woke up every

few hours but he wasn't screaming with what a now know to be gut pain. He

stopped dragging his head across the floor or rubbing it on the wall- something

he'd done for a year or more.

He started preschool services through our local school system in Nov 2001. His

only language was a few basic words like " cookie " , " home " , " mommy " and memorized

songs and such- scripting. He could not sit in a chair for more than a minute.

I found the list in December 2001. I followed the stories of other families

just starting out and listened to the inspiring stories (that keep getting

better) from Marcia and others.

I continued to seek more information and searched and prayed about what else to

do for my son. I even went so far as to visit a local chiropractor who did

chelation, but when he said he'd never do it on a child because it would be too

dangerous I moved on to other ideas.

And we went to an allergist who did skin pricks on him and said since he didn't

react to milk or mold or pollen he did not need to be on allergy medicine or

restricted in his diet at all. I kept his diet GFCF but we dropped the allergy

medicine, for then.

But the list and weekly chat was always constant. Our extended family

members (included both of my son's grandmothers) have immune related

diseases/disorders such as fibromyalgia, arthritis, diabetes, Alzheimer's, etc,

so seemed logical.

After a rough/emotional summer vacation I decided to commit to the theory

and I called to make an appointment in July 2002 (my son was 4).

I also decided to switch from GFCF to the less-restrictive diet. There was

no regression.

Our appointment with Dr. Goldberg was October 1, 2002. We started with an

antifungal medication (I think that was chosen first because my son had a case

of ringworm over the summer.) After the die-off (worsening of symptoms) the

school people noticed improvements in focus and trying to communicate more. They

were small improvements, but noticeable.

Since that initial medication, we've added (and rotated) anti-virals (those

Roseola virus HHV-6 numbers from his infant year were sky-high and are just now

getting under control/to a normal level), allergy medication, and SSRIs. And we

tried Tenex, didn't work for us. And we did a round of IMGG for about a year in

2003-4.

The gains were slow and steady, almost too small to notice at times. And we've

had rough times/regression when certain medicines didn't work for him.

But within the first two years with Dr. Goldberg my son was sitting for school

work for up to 20 minutes at a time, speaking in two words phrases, and learning

to do math/read.

My son is currently 9.5 years old. He is repeating third grade (my choice) and

has been in a regular classroom with an aide since 2nd grade. He does still

receive some one-on-one tutoring with a special ed teacher for about an hour a

day. And about 30 minutes a week with an OT and also a speech pathologist.

Education wise, he's about 6 months behind in math skills (having trouble with

multiplication/division/etc), about a year behind his reading level, and reading

comprehension is a big problem still.

Socially he seeks out his peers and interacts but his expressive language is

still about 4-5 years behind schedule. He still does a lot of scripting, which

interferes with language/social skills.

And we are still working on complete toilet training- he's having trouble with

BMs, so he still has sensory issues.

He isn't 100%, but he's WAY better than he was. Especially compared to others

with similar issues...

I have a niece and a nephew that are about 1.5 and 2.5 years older than him that

are also special needs. Both of them were listed as PDD within the year after my

son was diagnosed. The nephew has " Aspergers/ODD/ADD/bipolar/etc " and my niece

is labeled " Autistic " . Both currently have severe behavioral/anger issues and

are performing significantly lower academically than my son. They are being

treated with mind-altering medications and are given medicines that knock them

out at night so they sleep. Neither is on restrict diets.

I became pregnant in 2005 and followed Dr. Goldberg's pregnancy guidelines

(followed the diet). When Baby boy #2 was born in Nov 2005 I opted out of

the Hepatitis B vaccine- the hospital didn't push when I said my older son

reacted to it- and we've followed the alternate vaccine schedule.

I was able to breastfeed boy #2 for two years; I followed the diet the

whole time. He has only been on medication FOUR times in his life.

He's a happy, healthy chatterbox. He's never had sleep/night screaming issues

and he pointed on schedule for his development.

He has been the BEST therapy for his big brother. They tickle each other and

roll on the floor together and play catch...

BIG different for my family in following /Dr. G's ideas. We've been blessed.

UPDATE AS OF JUNE 2009:

My oldest completed fourth grade this year but is still 1-2 years behind

academically. He's weakest subject is reading comprehension. This past school

year's he's responded better to peer tutors than the teachers/aides and doesn't

like to be shadowed- becoming more independent. He loves interaction but still

has the expressive language of about a 2-3 year old socially. He's happy and is

able to work at a desk for an hour at a time. MAJOR improvement in attention

span!

My second son is 3.5 years old and is still average/above average in all skills,

especially language. He talks non-stop, has creative play, and a vivid

imagination.

I gave birth to a healthy baby girl in September 2008. She's met all milestones

and just two months ago had her first ear infection/need for medication. She

developing average/above average as well for all milestones.

Hope this helps!

- in Mobile, AL

Thinking about going to Dr Goldberg

Im trying to figure out if my son fits the NiDS profile. I have been reading

both good progress and then no progress on the children. My son has only made

small gains with all I have done. I will be traveling from Ohio to see him. I

just feel the Dr's I have seen do not have a plan, it seems I am always asking

for things. I did watch the presentation and he does have most of the things he

stated( slient seizures, poor sleeper, fine and gross motor,, non verbal sensory

processing. I did have him allergy tested via blood and back prick and all was

negative. If people could post if their child made progess and no progress and

what they were like

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June 13, 2009

Northern NY. He is also in Southern Texas. We flew from Chicago to buffalo, NY

and drove the rest of the way, it was about 3 hours from Buffalo.

www.nnyautismcenter.com

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