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Can you also let us know what reading materials he recommended?

Thanks,

Carol

Dr

In a message dated 8/11/03 11:24:36 PM Central Daylight Time,

dawfogle@... writes:

<< I just wanted to comment that my son recently went to see him and he

ordered numerous serological tests (not as many as Dr. G's protocal)

for my son before medications would even be started and was very

open to my thoughts on everything I had been reading and gave me a

wealth of information to read. <other good stuff snipped> It all

depends on

the child and their progress (plus what he sees in the lab

testing-which he

does every 6 weeks). >>

It's very good to hear that he's now ordering tests and lab testing

every 6

weeks. The several other folks I know who saw him a bit longer ago said

he

diagnosed their kids' viral problems only with a strange ear test.

If you don't mind sharing, what tests did he order and what tests does

he run

every 6 weeks?

Gaylen

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> If you don't mind sharing, what tests did he order and what tests

does he run

> every 6 weeks?

> Gaylen

He ordered the following for my son:

cortisol level

TSH

Chem 7 (or SMA7 whichever you prefer)

GH level

He did not order the viral titer because he believes that the virus

is in the inner ear. He looks through the childs history and the

family history plus in office testing to see if your child is a

potential patient for this. I know that all of you guys want proof

of a virus being present before any anti-viral drugs are

administered, but I believe my son has a viral problem (test or no

test) and if this is one way of getting the medications he needs

then I will do it this way. I understand that you all like the

goldberg way of doing things but there are many other ways. I

really got on this board to just get ideas on what to expect with

anti-viral therapy, not to compare docs. I like Dr. and

being a health practitioner myself believe in all that he is doing

for my son. The reading materials were his theory on things and a

study that was done on child with one of the medications he gave my

son (provigil). He also gave my information about why

neurotransmitters willnot cross blood-brain, as I was giving my son

up to 6 pills a day just for this. I guess what I am trying to say

is I think everyone should find out about docs on their own or talk

with patients of his before making the decision not to follow there

treatment plan.

Just my $0.02,

Dena

Mother of Hayden (3yrs PPD-NOS)

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Dena,

Another thing Dr. G looked at in my son (in looking for viruses) was his low

white blood cell count and the fact that he had hypotonia (low muscle tone)

as possible clues to an underlying virus even though nothing showed up in

his " virus " labs. When we put my child on Valtrex, his muscle tone

" normalized " , according to a pediatric specialist he had seen for years, and

he began to have normal reflexes where he had had NONE before.

Just thought you might be interested.

I find it really interesting that Dr. believes a virus can affect

the inner ear, as I have a hearing loss on one side which was attributed to

my horrendous case of chicken pox when I was young. That inner ear has

always been very tender and just feels different than the other ear, even

though they told me it was nerve deafness. I always wonder about it.

Caroline

> On 8/12/03 6:12 PM, " dawfogle " <dawfogle@...> wrote:

> I know that all of you guys want proof

> of a virus being present before any anti-viral drugs are

> administered, but I believe my son has a viral problem (test or no

> test) and if this is one way of getting the medications he needs

> then I will do it this way.

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Dena,

If I offended you with my comments about Dr. , I apologize. My

comments were meant mainly to share info I'd gathered from several parents of

kids

who are or have seen Dr. , and a doctor who sends patients to him and is

following several cases, on how his methods differed from Dr. Goldberg's.

I fully agree that anyone planning to see a particular doctor should try to

talk with current patients themselves and make up their own mind about if the

doc is appropriate for their child (since every child is so different). But if

you're willing to discuss your understanding of his experience/thoughts

further, I think it might be helpful to those of us trying to learn as much as

we

can about viral issues and various treatment methods. For example:

<< He did not order the viral titer because he believes that the virus is in

the inner ear.>>

Does he believe the virus has settled only in the inner ear and nowhere else

in the body? If so, is this like a chronic ear infection of sorts? Does he

see that his patients who respond better to his treatment tend to have lots of

balance problems or other symptoms usually associated with the inner ear? or

tend to complain of more ear infections that can't be treated well? The inner

ear theory would correspond with vestibular problems and a feeling of being

off in general.

<< He looks through the childs history and the family history plus in office

testing to see if your child is a potential patient for this. I know that

all of you guys want proof

of a virus being present before any anti-viral drugs are administered, >>

Actually, many of the kids helped with do not show elevated viral titers

at first and some never do because their bodies are not able to fight off the

virus (and thus develop titers) until awhile into viral supression. Dr. G

also uses history quite a bit in determining whether or not to treat a virus and

does not require elevated titers for treatment. Most of the tests he refers

to check for how the immune system in general is doing.

<<The reading materials were his theory on things and a study that was done

on child with one of the medications he gave my son (provigil).>>

I've been hearing a little bit about this treatment through the grapevine and

find it interesting. How is your son doing on Provigil?

Gaylen

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> If I offended you with my comments about Dr. , I apologize.

No, I was not offended and you don't need to apologize.

> Does he believe the virus has settled only in the inner ear and

nowhere else

> in the body?

He believes it is the inner ear only. Not really the ear infections

as it is the whole vestibular system, thus causing the SID symptoms.

Does he

> see that his patients who respond better to his treatment tend to

have lots of

> balance problems or other symptoms usually associated with the

inner ear? From the reading is those who orignally started him in

treating ASD children. He treated vertigo and such. Related their

symptoms to ASD and SID.

> I've been hearing a little bit about this treatment through the

grapevine and find it interesting. How is your son doing on

Provigil?

Hayden is doing well on it. He seems much more focused during

therapy and he is no longer wearing his weighted vest for all

sessions. Haven't seen any side effects so far. I will let you

know how it goes.

Dena

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Dena, Dr. is an ENT, right? Do you know by any chance which

medical school he went to and where he did his residency?

thanks,

Timary

>

> > If I offended you with my comments about Dr. , I

apologize.

>

> No, I was not offended and you don't need to apologize.

>

>

> > Does he believe the virus has settled only in the inner ear and

> nowhere else

> > in the body?

> He believes it is the inner ear only. Not really the ear infections

> as it is the whole vestibular system, thus causing the SID

symptoms.

> Does he

> > see that his patients who respond better to his treatment tend to

> have lots of

> > balance problems or other symptoms usually associated with the

> inner ear? From the reading is those who orignally started him in

> treating ASD children. He treated vertigo and such. Related their

> symptoms to ASD and SID.

>

> > I've been hearing a little bit about this treatment through the

> grapevine and find it interesting. How is your son doing on

> Provigil?

>

> Hayden is doing well on it. He seems much more focused during

> therapy and he is no longer wearing his weighted vest for all

> sessions. Haven't seen any side effects so far. I will let you

> know how it goes.

>

>

> Dena

>

> ______________________________

> ``````````````````````````````

> 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.

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What is Provigil? What type of drug is it? What does it treat? Kathy

Re: Dr

> If I offended you with my comments about Dr. , I apologize.

No, I was not offended and you don't need to apologize.

> Does he believe the virus has settled only in the inner ear and

nowhere else

> in the body?

He believes it is the inner ear only. Not really the ear infections

as it is the whole vestibular system, thus causing the SID symptoms.

Does he

> see that his patients who respond better to his treatment tend to

have lots of

> balance problems or other symptoms usually associated with the

inner ear? From the reading is those who orignally started him in

treating ASD children. He treated vertigo and such. Related their

symptoms to ASD and SID.

> I've been hearing a little bit about this treatment through the

grapevine and find it interesting. How is your son doing on

Provigil?

Hayden is doing well on it. He seems much more focused during

therapy and he is no longer wearing his weighted vest for all

sessions. Haven't seen any side effects so far. I will let you

know how it goes.

Dena

______________________________

``````````````````````````````

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

opinion of the Research Institute.

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> Dena, Dr. is an ENT, right? Do you know by any chance

which

> medical school he went to and where he did his residency?

>

He went to UTMB in Texas. He did three residencies in Houston and in

Dallas. His CV is on his website www.necs.us . Click on about the

doctor and it will come up and answer these questions in detail.

Dena

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opinion of the Research Institute.

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> What is Provigil? What type of drug is it? What does it treat?

Provigil is a drug initally marketed to treat nacolepsy. It is the

first on a new class of wake-promoting drugs that works at the

cortex of the brain and not through dopaminergic mechanisms. In a

study done on children with ADHD the findings were that the children

treated with provigil were more alert and attended to things with

much more depth then before drug therapy with initiated. The doc

said that it would make him more aware of what is going on and even

help with his motor skills, in that he would be able to attended to

what he wanted to do and would have better motor planning. Hayden

is much more aware of what is going on, but he is still very stimmy

which I was hoping would decrease with the awareness (but now I have

been reading that it usually increases....hmmmmmm).

Dena

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opinion of the Research Institute.

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Dena - are you sure the website is www.necs.us? I tried it and I get

something else..

timary

> > Dena, Dr. is an ENT, right? Do you know by any chance

> which

> > medical school he went to and where he did his residency?

> >

> He went to UTMB in Texas. He did three residencies in Houston and

in

> Dallas. His CV is on his website www.necs.us . Click on about the

> doctor and it will come up and answer these questions in detail.

>

> Dena

>

> ______________________________

> ``````````````````````````````

> 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.

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oops! I goofed! It is www.neca.us not necs-so sorry! Dena

> > ______________________________

> > ``````````````````````````````

> > 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.

> > ```````````````````````````````````````

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