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Re: How do we get started with the protocol?

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Hi,

Quite some time ago I asked if there was anyone who had a recommendation for

a doctor in California besides Dr. Goldberg who follows the protocol. I

was told to email info@... which I did but still have not gotten any

response. Does anyone have any suggestion for a good doctor on the west coast

(preferably California) or a place that has a list of physicians using the

protocol?

Thanks,

Susi

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Hi Hadley,

Unfortunately Dr. Goldberg isn't seeing new patients at this time. But I would

recommend seeing Dr. Layton in Towson Md. . He's a good Dr. as well as a

caring person. His office # is (410) 337-2707. He does use the protocol

but also uses some DAN treatments if he feels it's appropriate for your child.

We only follow the protocol, but every child is different and what is right

for one might be terribly wrong for another.

Take care,

How do we get started with the protocol?

My son is 19 months old. He has been diagnosed with Mild Cerebral

Palsy, Strabismus and Developmental Delay. He has been unofficially

diagnosed with PDD & a craniofacial syndrome (they aren't sure which

one). He has chronic ear infections and has had pneumonia several

times. He has eczema. too.

He had a somewhat traumatic birth, was stuck in the birth canal, his

heart rate dropped and we were rushed into the OR and I had an

emergency c-section. His apgars were 8 and 9. I was Group B

strep+. Both myself & my son are both Rh negative. I had the rhogam

shots during my pregancy.

He has many autistic-like characteristics which have caused the

doctors to question a PDD diagnosis. He spins himself around

constantly, mouths everything, licks objects and becomes disconnected

often, zoning out for periods of time. His attention span is almost

non-existent.

He receives OT, Speech, PT and Cognitive therapies.

I have migraines, fibromyalgia & osteoarthritis. My husband has

diabetes. My husband's mother died at age 29 of systemic Scleroderma.

We would like to get started with the protocol and need advice

on where to begin.

Do we need to go to California to see Dr. G? We live in Rehoboth

Beach, Delaware and hoped a doctor in either Delaware, land or

Pennsylvania could help us.

How do we begin all of this? Any help would be greatly appreciated,

we are completely new at this and only know what we have read on the

.net website.

Thank you in advance,

Hadley

Group Owner of

Parents_of_special_needs_kids_DE_

MD_PA/

(Delaware, land, Pennsylvania & New Jersey)

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute.

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Hi ,

> Maybe you were trying to reach the e-mail address for the

> Coalition? That address is::

> info@... --- info @ healnids.org

>

>

Oh yes...that's the one I meant I tried :-)

>

> PS Also, the contact information for the Coalition, Chapter

> info., etc. is always stored in the LINKS section at @groups

>

>

I'll check the info on the list then and see what I find. Thanks!

Susi

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In a message dated 3/15/04 11:20:42 AM Hawaiian Standard Time, golivo@...

writes:

> Where in CA do you live?

>

Hi Argie,

We live in Honolulu but travel at least 3 times a year to California and

Arizona for treatment, therapy and evals. We spend the most time in San Diego

and

San areas and briefly in Los Angeles.

Susi

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Hi Suzi,

Where in CA do you live?

Argie

Re: How do we get started with the protocol?

Hi,

Quite some time ago I asked if there was anyone who had a recommendation for

a doctor in California besides Dr. Goldberg who follows the protocol. I

was told to email info@... which I did but still have not gotten any

response. Does anyone have any suggestion for a good doctor on the west coast

(preferably California) or a place that has a list of physicians using the

protocol?

Thanks,

Susi

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Yes!

Jaquelyn McCandless. Children with Starving Brains: A Medical Treatment

Guide for Autism Spectrum Disorders (Bramble, 2002). See second edition.

ISBN: 1883647096 (paperback, 262 pages).

She is in the LA Area. Very impressive clinician. She is an MD and just a

bit more tolerant then Dr G.

R

Re: How do we get started with the protocol?

Hi,

Quite some time ago I asked if there was anyone who had a recommendation for

a doctor in California besides Dr. Goldberg who follows the protocol.

I

was told to email info@... which I did but still have not gotten any

response. Does anyone have any suggestion for a good doctor on the west

coast

(preferably California) or a place that has a list of physicians using the

protocol?

Thanks,

Susi

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Guest guest

Hi Hadley,

There is the Northern New York Coalition, located in

Watertown, NY (about an hour north of Syracuse). Kathy on in

the nurse who runs the clinic and she is wonderful,a great source of

information and always helpful. You can e-mail her at

JOSKAT95@....

I have a 4 year old daughter who just began protocol, so I'm just

beginning to learn all about this myself. Therefore, I can't offer

you much advice. She is just coming off of die-off, which has been

difficult, but already we've seen some small positive changes in

her. So, I think you're heading in the right direction and I wish

you luck. Keep us posted.

Jess

> My son is 19 months old. He has been diagnosed with Mild Cerebral

> Palsy, Strabismus and Developmental Delay. He has been

unofficially

> diagnosed with PDD & a craniofacial syndrome (they aren't sure

which

> one). He has chronic ear infections and has had pneumonia several

> times. He has eczema. too.

>

> He had a somewhat traumatic birth, was stuck in the birth canal,

his

> heart rate dropped and we were rushed into the OR and I had an

> emergency c-section. His apgars were 8 and 9. I was Group B

> strep+. Both myself & my son are both Rh negative. I had the

rhogam

> shots during my pregancy.

>

> He has many autistic-like characteristics which have caused the

> doctors to question a PDD diagnosis. He spins himself around

> constantly, mouths everything, licks objects and becomes

disconnected

> often, zoning out for periods of time. His attention span is

almost

> non-existent.

>

> He receives OT, Speech, PT and Cognitive therapies.

>

> I have migraines, fibromyalgia & osteoarthritis. My husband has

> diabetes. My husband's mother died at age 29 of systemic

Scleroderma.

>

> We would like to get started with the protocol and need

advice

> on where to begin.

>

> Do we need to go to California to see Dr. G? We live in Rehoboth

> Beach, Delaware and hoped a doctor in either Delaware, land or

> Pennsylvania could help us.

>

> How do we begin all of this? Any help would be greatly

appreciated,

> we are completely new at this and only know what we have read on

the

> .net website.

>

> Thank you in advance,

>

> Hadley

>

> Group Owner of

>

Parents_of_special_needs_kids_DE

_

> MD_PA/

>

> (Delaware, land, Pennsylvania & New Jersey)

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I am finally just starting the anti viral and I am at a loss as to how

to get the little guy to take the med short of forcing him. He is very

sporadic about which foods he will eat on any day. At the cost of the

pills I am reluctant to mix it with a food he may or may not eat. Anyone

have any simple solutions.

Bill K

Re: How do we get started with the protocol?

Hi Hadley,

There is the Northern New York Coalition, located in

Watertown, NY (about an hour north of Syracuse). Kathy on in

the nurse who runs the clinic and she is wonderful,a great source of

information and always helpful. You can e-mail her at

JOSKAT95@....

I have a 4 year old daughter who just began protocol, so I'm just

beginning to learn all about this myself. Therefore, I can't offer

you much advice. She is just coming off of die-off, which has been

difficult, but already we've seen some small positive changes in

her. So, I think you're heading in the right direction and I wish

you luck. Keep us posted.

Jess

> My son is 19 months old. He has been diagnosed with Mild Cerebral

> Palsy, Strabismus and Developmental Delay. He has been

unofficially

> diagnosed with PDD & a craniofacial syndrome (they aren't sure

which

> one). He has chronic ear infections and has had pneumonia several

> times. He has eczema. too.

>

> He had a somewhat traumatic birth, was stuck in the birth canal,

his

> heart rate dropped and we were rushed into the OR and I had an

> emergency c-section. His apgars were 8 and 9. I was Group B

> strep+. Both myself & my son are both Rh negative. I had the

rhogam

> shots during my pregancy.

>

> He has many autistic-like characteristics which have caused the

> doctors to question a PDD diagnosis. He spins himself around

> constantly, mouths everything, licks objects and becomes

disconnected

> often, zoning out for periods of time. His attention span is

almost

> non-existent.

>

> He receives OT, Speech, PT and Cognitive therapies.

>

> I have migraines, fibromyalgia & osteoarthritis. My husband has

> diabetes. My husband's mother died at age 29 of systemic

Scleroderma.

>

> We would like to get started with the protocol and need

advice

> on where to begin.

>

> Do we need to go to California to see Dr. G? We live in Rehoboth

> Beach, Delaware and hoped a doctor in either Delaware, land or

> Pennsylvania could help us.

>

> How do we begin all of this? Any help would be greatly

appreciated,

> we are completely new at this and only know what we have read on

the

> .net website.

>

> Thank you in advance,

>

> Hadley

>

> Group Owner of

>

Parents_of_special_needs_kids_DE

_

> MD_PA/

>

> (Delaware, land, Pennsylvania & New Jersey)

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute.

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Bill,

Does he like applesauce? With my son, we crushed the med, then mixed

it into a spoonful (or several) of applesauce.

timary

> > My son is 19 months old. He has been diagnosed with Mild

Cerebral

> > Palsy, Strabismus and Developmental Delay. He has been

> unofficially

> > diagnosed with PDD & a craniofacial syndrome (they aren't sure

> which

> > one). He has chronic ear infections and has had pneumonia

several

> > times. He has eczema. too.

> >

> > He had a somewhat traumatic birth, was stuck in the birth canal,

> his

> > heart rate dropped and we were rushed into the OR and I had an

> > emergency c-section. His apgars were 8 and 9. I was Group B

> > strep+. Both myself & my son are both Rh negative. I had the

> rhogam

> > shots during my pregancy.

> >

> > He has many autistic-like characteristics which have caused the

> > doctors to question a PDD diagnosis. He spins himself around

> > constantly, mouths everything, licks objects and becomes

> disconnected

> > often, zoning out for periods of time. His attention span is

> almost

> > non-existent.

> >

> > He receives OT, Speech, PT and Cognitive therapies.

> >

> > I have migraines, fibromyalgia & osteoarthritis. My husband has

> > diabetes. My husband's mother died at age 29 of systemic

> Scleroderma.

> >

> > We would like to get started with the protocol and need

> advice

> > on where to begin.

> >

> > Do we need to go to California to see Dr. G? We live in Rehoboth

> > Beach, Delaware and hoped a doctor in either Delaware, land

or

> > Pennsylvania could help us.

> >

> > How do we begin all of this? Any help would be greatly

> appreciated,

> > we are completely new at this and only know what we have read on

> the

> > .net website.

> >

> > Thank you in advance,

> >

> > Hadley

> >

> > Group Owner of

> >

>

Parents_of_special_needs_kids_DE

> _

> > MD_PA/

> >

> > (Delaware, land, Pennsylvania & New Jersey)

>

>

>

>

> Responsibility for the content of this message lies strictly with

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

> opinion of the Research Institute.

>

>

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Also, this may sound a little weird, but I have a friend who gives

her son (who is a very picky eater) his meds with something she got

from PetSmart used to give dogs their meds. I'm not sure quite how

it works, but the way she describes it, it sounds like a type of

syringe that shoots the med to the back of the throat. Then she

gives her son something to drink. He fought it at first, but is

slowly getting used to it.

timary

> > My son is 19 months old. He has been diagnosed with Mild

Cerebral

> > Palsy, Strabismus and Developmental Delay. He has been

> unofficially

> > diagnosed with PDD & a craniofacial syndrome (they aren't sure

> which

> > one). He has chronic ear infections and has had pneumonia

several

> > times. He has eczema. too.

> >

> > He had a somewhat traumatic birth, was stuck in the birth canal,

> his

> > heart rate dropped and we were rushed into the OR and I had an

> > emergency c-section. His apgars were 8 and 9. I was Group B

> > strep+. Both myself & my son are both Rh negative. I had the

> rhogam

> > shots during my pregancy.

> >

> > He has many autistic-like characteristics which have caused the

> > doctors to question a PDD diagnosis. He spins himself around

> > constantly, mouths everything, licks objects and becomes

> disconnected

> > often, zoning out for periods of time. His attention span is

> almost

> > non-existent.

> >

> > He receives OT, Speech, PT and Cognitive therapies.

> >

> > I have migraines, fibromyalgia & osteoarthritis. My husband has

> > diabetes. My husband's mother died at age 29 of systemic

> Scleroderma.

> >

> > We would like to get started with the protocol and need

> advice

> > on where to begin.

> >

> > Do we need to go to California to see Dr. G? We live in Rehoboth

> > Beach, Delaware and hoped a doctor in either Delaware, land

or

> > Pennsylvania could help us.

> >

> > How do we begin all of this? Any help would be greatly

> appreciated,

> > we are completely new at this and only know what we have read on

> the

> > .net website.

> >

> > Thank you in advance,

> >

> > Hadley

> >

> > Group Owner of

> >

>

Parents_of_special_needs_kids_DE

> _

> > MD_PA/

> >

> > (Delaware, land, Pennsylvania & New Jersey)

>

>

>

>

> Responsibility for the content of this message lies strictly with

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

> opinion of the Research Institute.

>

>

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Hi Bill,

This is what we do to get our son to take the antiviral.

If your using Valtrex, wash the blue dye off. Dry the pills on a paper towel.

Then use a pill splitter/crusher to spilt and crush. Only one at a time so your

sure to get the correct dose daily. We then mix it power in baby food pears,

bananas or peaches. I just mix half of a pill into about two teaspoons of the

fruit. This works well for us. We used to mix it in a little grape juice but he

stopped drinking it so we went to the fruit. ly after a while the meds.

become matter a fact and the fighting ends. I also remind my son that this will

make him feel better and stay positive. Good luck, HTH,

RE: Re: How do we get started with the protocol?

I am finally just starting the anti viral and I am at a loss as to how

to get the little guy to take the med short of forcing him. He is very

sporadic about which foods he will eat on any day. At the cost of the

pills I am reluctant to mix it with a food he may or may not eat. Anyone

have any simple solutions.

Bill K

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute.

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We hide all pills in a BIG bite of applesauce. Antivirals are fairly small

and easy to hide, and since applesauce requires no chewing it all goes down

in one swallow. At first I ground the pills up, but that makes them taste

worse. Swallowing whole in applesauce works for about everything here.

HTH Becky

----- Original Message -----

From: " bill klimas " <BristolY@...>

> I am finally just starting the anti viral and I am at a loss as to how

> to get the little guy to take the med short of forcing him. He is very

> sporadic about which foods he will eat on any day. At the cost of the

> pills I am reluctant to mix it with a food he may or may not eat. Anyone

> have any simple solutions.

> Bill K

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Hi Bill,

I'm so glad you're getting started on the meds. I'm familiar with

your posts and know how badly you wanted to start - I hope you have

great results! My daughter is pretty picky too. I took the

applesauce thing a little further and got Gerber stage2 (Yes baby

food) Bananas and mixed berries (it's extremely thick, almost like a

pudding - she thinks it's a treat, not just plain old fruit). One

spoonful covers her whole dose and she takes it right off the spoon.

(one container lasts me a couple of days) I don't know if this will

work for you, but I never thought this would be so easy with my

daughter. Hope this helps.

Jess

> I am finally just starting the anti viral and I am at a loss as to

> how

> to get the little guy to take the med . . . .

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We crush the pill (Walmart has a good pill crusher)

and mix it in about 1 1/2 teaspoon of rice milk, mix

well, draw up into a syringe that is good for giving

meds. They accept it fine,now, but at first, we did

actually have to force them. To do that, one parent

stood behind the child and held him by the forehead to

yourself, pinning arms w/the other hand. The syringe

we use has a tiny spout and has good force, and we

stuck that into the corner of their mouths, aiming for

the back of the throat. We talked gently the whole

time, then said " Hurry - wash it down! " and rewarded

him w/ a treat - usually a vitamin in the am, apple

sauce in the afternoon, and triaminic nighttime at

night. We also praised him like he had done something

wonderful and made a big deal every time. Only the

first few days were rough, and then it became natural.

If you act like it's no big deal but that you

understand it's yucky, they don't stay mad at ya. :)

I also always said Ooh YUCKY! w/a funny face that

eventually made them laugh.

It's worth it. I loved the idea someone mentioned

about crushing the vitamin w/the meds to mask the

flavor - sounds like a good idea.;

My oldest will take the pill in the applesauce,

swallow the apple sauce, and spit out the pill. :) But

I quickly stopped trying to hide it in anything

because it repulsed them from the food.

Good luck!

--- bill klimas <BristolY@...> wrote:

> I am finally just starting the anti viral and I am

> at a loss as to how

> to get the little guy to take the med short of

> forcing him. He is very

> sporadic about which foods he will eat on any day.

> At the cost of the

> pills I am reluctant to mix it with a food he may or

> may not eat. Anyone

> have any simple solutions.

> Bill K

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***** E D I T O R I A L C O M M E N T *****

From a Neuro-Immune Dysfunction treatment perspective, the usage of

Mega-Dose vitamin treatments is contraindicated. Strong Caution

would be advised in following any and all mega-dose supplement

protocols.

*********************************************************************

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