Re: For those who have had very slow progress

July 27, 2003

Hi,

To answer your question about chelation, I have a few questions for you

before you make even consider this treatment. We tried chelation for two rounds

with our 4 year old. After which we lost him for months!! All the progress that

he had made went down the drain because of major bacterial and yeast issues

related to the harshness of these drugs on the G.I. tract.

How do you know that she has mercury poisioning? My sons pupils were dialated

before chelation and after. This did not change as it's a common feature in

these kids due to the sympathic nervous system not working properly. WE use 3/4

tsp. of cod liver a day and this helps greately with his pupils as well as eye

contact. This problem is almost gone.

My son began imaginary play around ( 3 1/2 yrs old ) .Now he prefers to play

this way almost exclusively- this is also an extreme that we have to work on

with him every day. Your daughter may just surprise you very soon- typical kids

may not develop this form of play until three years old anyway.If your daughter

was damaged by mercury it's going to take time for her body to recover via a

strong immune system.

We did the Dan protocol before trying and I can say that we are so much

closer to normal using Dr. Goldbergs method. All the supplements made my son ill

as there is very little science in this method. We were given a list of many

things to start with and my son went from talking and interacting to walking

into walls. This also took months to recover from.

Did your daughter develop normally then regress or has her development been

atypical from the beginning? This also makes a difference as to how quickly they

come around.

As for the diarrhea, have you consulted a pediatric G.I. doctor? Have you

submitted stool samples for testing ? She may have a bacterial overgrowth and

need very specific antibiotics to treat this?

We had this problem along with malabsorption and we needed to rotate

ANTIBIOTICS as well as antifungals to address this issue.

I hope this helps you and maybe going in another direction using conventional

medicine will help.

Take care,

For those who have had very slow progress

Hi all: We've been on the NIDs protocal since October. Our 3.5

year old daughter has made very slow progress. She is " brighter and

more alert " but we have never seen anything dramatic with any med

changes and the progress we've seen may not have anything to do with

NIDs at all. Some people are mentioning the emergence of

imaginative play with SSRI's etc. We have seen absolutely nothing

from the two SSRI's we've tried. So, my question is this. How do

we know that the protocal is our answer? Shouldn't we see something

a little more obvious?

I've always been concerned with thimerosal issues (I can remember

making comments to my husband that her pupils were dilated, hands

were sweaty...all pointing to mercury poisoning). We have not

considered chelation because I know that Dr. G is so opposed to

it...but I'm getting scared because she is not recovering and the

clock is ticking (results of chelation are better at a younger

age). Maybe it's not viral, maybe it is metals. The other issue is

that after 6 months of antifungals we still have diarrhea. No real

improvement in that area. Over the last 3 weeks we have switched

from gfcfsf to the specific carbohydrate diet. I am hoping we can

heal the bowel this way.

So are there families out there who have had slow progress intially

and then suddenly took off?

The protocal for us has consisted of antivirals, antifungals and

SSRI's only.

Thanks, Terri

July 27, 2003

, Thanks for replying. First, our daughter regressed into

autism at 16 months after the measles vaccine. Possibly a build up

of mercury over time as well. She had 25 words at the time. She

lost words then regained a little and now lost everything and she is

nonverbal at 3.5. Here pupils are not currently dilated but I

remember some eary moments at 17 months where her pupils were

dilated, she had sweaty palms and her fingers were crossing. I knew

something was wrong.

We tried cod liver oil and she didn't seem to tolerate it.

Why doesn't Dr. G do bowel testing? We have done some with another

doctor and Dr. G told me he doesn't beleive the results or trust the

lab (I think it's great smokies). But he has never tested the stool

for bacteria as you have suggested.

Hope this answers you questions. Thanks for you input. Terri

--- In , " Anagnostakos " <lsa588522@m...>

wrote:

> Hi,

>

> To answer your question about chelation, I have a few questions

for you before you make even consider this treatment. We tried

chelation for two rounds with our 4 year old. After which we lost

him for months!! All the progress that he had made went down the

drain because of major bacterial and yeast issues related to the

harshness of these drugs on the G.I. tract.

> How do you know that she has mercury poisioning? My sons pupils

were dialated before chelation and after. This did not change as

it's a common feature in these kids due to the sympathic nervous

system not working properly. WE use 3/4 tsp. of cod liver a day and

this helps greately with his pupils as well as eye contact. This

problem is almost gone.

> My son began imaginary play around ( 3 1/2 yrs old ) .Now he

prefers to play this way almost exclusively- this is also an extreme

that we have to work on with him every day. Your daughter may just

surprise you very soon- typical kids may not develop this form of

play until three years old anyway.If your daughter was damaged by

mercury it's going to take time for her body to recover via a strong

immune system.

> We did the Dan protocol before trying and I can say that

we are so much closer to normal using Dr. Goldbergs method. All the

supplements made my son ill as there is very little science in this

method. We were given a list of many things to start with and my son

went from talking and interacting to walking into walls. This also

took months to recover from.

> Did your daughter develop normally then regress or has her

development been atypical from the beginning? This also makes a

difference as to how quickly they come around.

> As for the diarrhea, have you consulted a pediatric G.I.

doctor? Have you submitted stool samples for testing ? She may have

a bacterial overgrowth and need very specific antibiotics to treat

this?

> We had this problem along with malabsorption and we needed to

rotate ANTIBIOTICS as well as antifungals to address this issue.

> I hope this helps you and maybe going in another direction

using conventional medicine will help.

> Take care,

>

> For those who have had very slow progress

>

> Hi all: We've been on the NIDs protocal since October. Our 3.5

> year old daughter has made very slow progress. She is " brighter

and

> more alert " but we have never seen anything dramatic with any

med

> changes and the progress we've seen may not have anything to do

with

> NIDs at all. Some people are mentioning the emergence of

> imaginative play with SSRI's etc. We have seen absolutely

nothing

> from the two SSRI's we've tried. So, my question is this. How

do

> we know that the protocal is our answer? Shouldn't we see

something

> a little more obvious?

>

> I've always been concerned with thimerosal issues (I can

remember

> making comments to my husband that her pupils were dilated,

hands

> were sweaty...all pointing to mercury poisoning). We have not

> considered chelation because I know that Dr. G is so opposed to

> it...but I'm getting scared because she is not recovering and

the

> clock is ticking (results of chelation are better at a younger

> age). Maybe it's not viral, maybe it is metals. The other

issue is

> that after 6 months of antifungals we still have diarrhea. No

real

> improvement in that area. Over the last 3 weeks we have

switched

> from gfcfsf to the specific carbohydrate diet. I am hoping we

can

> heal the bowel this way.

>

> So are there families out there who have had slow progress

intially

> and then suddenly took off?

>

> The protocal for us has consisted of antivirals, antifungals and

> SSRI's only.

>

> Thanks, Terri

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July 27, 2003

Hey, Terri,

We've been with Dr. G since October as well. Ammon just turned five and I'd say

he's made slow, but somewhat steady improvements. He's on his second antifungal

and antiviral but on his third SSRI.

As for your concern with imaginative play- Ammon is playing more appropriately

with toys, but still makes groups/lines things up occasionally. The imaginative

play he is doing is with his Little People and it's more repeating lines from

the video (most of his language is memorized from songs and videos, he has

trouble choosing words to communicate his own wants) and making the figures do

what he's seen on the videos- so that might be more imitative.

Side note: I think the Little People toys/videos are get for this reason- the

videos look so much like the toys that I think it helps teach Ammon HOW to play

with the toys.

Ammon's never had a special blanket or animal or anything, but now he'll pick

out a baby doll or animal and drag it around for several days, propping it up in

chairs or taking it in the car with him and such. He's not having conversations

with them but the whole act of it seems more " typical. "

Ammon has had soft/loose stools with a light/odd color as well. The only thing

that darkened/firmed it was a round of antibiotics when he had an ear infection

late winter. He does get the diarrhea (runny, off-colored) sometimes, but the

more regular (still not perfect) movements are the majority now.

From what I understand many of the mercury signs are also immune related as

well. Ammon's main physical symptom is dark circles around his eyes. They've

lightened up a bit for a while, but have never gone away completely.

We'll be starting up with Kutapressin once it's available and from what I've

heard and what the doctor has said about Ammon's symptoms we're hoping it will

help him make great advances.

Being patient is the hardest part!

- in AL

Reality lies beyond the horizon...

Wonderwegian

July 28, 2003

In a message dated 7/27/03 1:32:49 PM Central Daylight Time,

tlschuldt2001@... writes:

>

> > Hi,

> >

> > We tried chelation for two rounds with our 4 year old. After which we

> lost

> him for months!!

If you don't mind sharing, I'm curious about the chelator/protocol you used.

Also, did the doctor do a CBC to check neutraphil levels prior to beginning

chelation? Did he also take a bunch of " support " supplements during these two

rounds? I ask because I am a consultant and autism society support person so

talk to many parents about various treatments and therapies and like to keep

up on both positive and negatives. Feel free to answer me off list if you

prefer.

> > How do you know that she has mercury poisioning? My sons pupils

> were dialated before chelation and after. This did not change as

> it's a common feature in these kids due to the sympathic nervous

> system not working properly.

That's true. Allergies often cause pupil dialation plus these sometimes

occur as a part of an absence seizure.

Gaylen

---------------------------------

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.

July 28, 2003

Terri,

I feel for you. It is so frustrating when you don't see progress. My

son improved with antivirals, but the antifungals and so far the SSRI

doesn't seem to be doing anything positive.

For my son, diet is so integral. Have you tried eliminating other foods

besides casein, gluten, and soy? Citrus, nuts/seeds, and grapes are big

no-nos for us. It is SO hard to get my son's stools normal, and once we do,

it only lasts for a week or so then something sets him off and I spend

another two weeks trying to normalize them again.

Even if your daughter doesn't test positive to a lot on the food screen,

there may be some foods on there that are

bothering her. Dr. G is usually not too strict about dietary measures, but

for us its critical, more than he gives credit for I think.

Just some thoughts........

Becky

For those who have had very slow progress

> Hi all: We've been on the NIDs protocal since October. Our 3.5

> year old daughter has made very slow progress. She is " brighter and

> more alert " but we have never seen anything dramatic with any med

> changes and the progress we've seen may not have anything to do with

> NIDs at all. Some people are mentioning the emergence of

> imaginative play with SSRI's etc. We have seen absolutely nothing

> from the two SSRI's we've tried. So, my question is this. How do

> we know that the protocal is our answer? Shouldn't we see something

> a little more obvious?

>

> I've always been concerned with thimerosal issues (I can remember

> making comments to my husband that her pupils were dilated, hands

> were sweaty...all pointing to mercury poisoning). We have not

> considered chelation because I know that Dr. G is so opposed to

> it...but I'm getting scared because she is not recovering and the

> clock is ticking (results of chelation are better at a younger

> age). Maybe it's not viral, maybe it is metals. The other issue is

> that after 6 months of antifungals we still have diarrhea. No real

> improvement in that area. Over the last 3 weeks we have switched

> from gfcfsf to the specific carbohydrate diet. I am hoping we can

> heal the bowel this way.

>

> So are there families out there who have had slow progress intially

> and then suddenly took off?

>

> The protocal for us has consisted of antivirals, antifungals and

> SSRI's only.

>

> Thanks, Terri

_______________________________

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

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.

July 29, 2003

Hi Terri,

I don't know why Dr. G. didn't do bowel testing? I can only assume that

because he's not a pediatric gastroenterologist and this is not his area of

expertise. Does he know about the diarrhea going on for so long?

I would call a ped.G.I. doc or my local pediatrician at the very least and

insist on cultures if my child had diarrhea for six months.

I have read that Dr. G doesn't trust Great Smokies Labs, and he's not alone.

Every professional that we saw told us to stay away from this lab?

I sure that you can have stool cultures done at any local hospital lab ,

Quest Diagnostics or LabCorp. Your pediatrician justs needs to give you a

script listing what he/she wants the stool tested for.

I really feel for you and know exactly what you are going through. It's so

hard when your trying to put the pieces of the puzzle together all the time. I

give you a lot of credit for trying so hard to help your daughter. I'm sure that

there is a light at the end of the tunnel!! " NO RAIN, NO RAINBOW "

Take Care,

Re: For those who have had very slow progress

, Thanks for replying. First, our daughter regressed into

autism at 16 months after the measles vaccine. Possibly a build up

of mercury over time as well. She had 25 words at the time. She

lost words then regained a little and now lost everything and she is

nonverbal at 3.5. Here pupils are not currently dilated but I

remember some eary moments at 17 months where her pupils were

dilated, she had sweaty palms and her fingers were crossing. I knew

something was wrong.

We tried cod liver oil and she didn't seem to tolerate it.

Why doesn't Dr. G do bowel testing? We have done some with another

doctor and Dr. G told me he doesn't beleive the results or trust the

lab (I think it's great smokies). But he has never tested the stool

for bacteria as you have suggested.

Hope this answers you questions. Thanks for you input. Terri

//message thread truncated//

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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.

July 29, 2003

There are a subgroup of children that do take a longer time to respond. They

do however respond. Your child is still making progress inside her body, she

is becoming healthier. Taking a heavy metal out of the inert state that the

body has put it in (and who does not have heavy metals in their body in this

contaminated world?) is a dangerous thing to do. We have gone over the medical

reasons why chelation is not a good choice on the list several times in the past

and I am not going to repeat them. It is very tough if your child is slow to

respond but remember the immunemodulators are coming and your child is young.

By keeping her on the protocol you are keeping her healthier so that she will

benefit from the new drugs. Kathy -NNY

July 30, 2003

Also, while the metals are in an inert state and

should not be causing any damage in that state, once

the body starts functioning more appropriately, it

will eliminate any toxins on its own far more

efficiently than any other treatment could ever do.

--- JOSKAT95@... wrote:

> There are a subgroup of children that do take a

> longer time to respond. They

> do however respond. Your child is still making

> progress inside her body, she

> is becoming healthier. Taking a heavy metal out of

> the inert state that the

> body has put it in (and who does not have heavy

> metals in their body in this

> contaminated world?) is a dangerous thing to do. We

> have gone over the medical

> reasons why chelation is not a good choice on the

> list several times in the past

> and I am not going to repeat them. It is very tough

> if your child is slow to

> respond but remember the immunemodulators are coming

> and your child is young.

> By keeping her on the protocol you are keeping her

> healthier so that she will

> benefit from the new drugs. Kathy -NNY

>

> [Non-text portions of this message have been

> removed]

__________________________________

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.

August 4, 2003

My son has had slow progress as well and we've been on the protocol for over 2

years. He is very stimmy and into eating dirt, sand and paper lately. People

have told me that this could also indicate a metals issue. I am very much going

to look into this whole metals/mercury issue, although I never believed his

shots caused this, even though he was one of the " regressive autism " cases. I

think there are several different issues causing this for our kids and different

approaches have to be looked into. Kathy