Re: Discussion of prognosis

[Guest guest]

In a message dated 07/28/2000 10:02:12 PM Eastern Daylight Time,

aholmesmd@... writes:

<< Andy, I think one of the worst things a physician can do is to

purposely give parents false hopes. So I try to understate the

prognosis, and if the child does better than I think he will - GREAT!

There is nothing better than a nice surprise.

>>

Amy, I truly respect your honesty, on the other hand I highly resented not

getting a clear and accurate picture of what to expect with my son. First

doctor after doctor pussy footed around with diagnosis. What is their problem

with saying " he is autistic " . Then I never was given information about what

to expect. This happened with all the doctors I went to, even the ped-neuro.

Why for 3-4 years I believed my son was going to be okay because I drove

45mins a day to speech and OT therapy. I actually told these doctors to

please share the truth with me. I would not have had such ugly surprises down

the road. I think most parents can deal with the truth. We may need a little

time to deal with initial grief, but that's about it. I would have done

things differently had I known. I would have looked at different

interventions. Made plans on how to handle my child in the future. I think

you get the picture. Why do doctors feel they need to make these choices for

parents? Carole

[Guest guest]

In a message dated 07/28/2000 11:36:42 PM Eastern Daylight Time,

aholmesmd@... writes:

<<

And you are right. When I retired from medicine 8 months pregnant,

I never dreamed I would EVER be doing this. I plan to retire again,

once a lot of our children are OK, then we can all go to

DisneyWorld.

Amy >>

Oh good idea :-) Carole

[Guest guest]

<< .its a wonderful

thing that you, Dr. Jane and others in this field take them time to

be

on these lists to answer our questions!

Sharon Howell

Baton Rouge,LA

Ditto, what she said!

PS: Looking forward to meeting all of your with our recovered

children at Disneyworld! Imagine...not even needing a special needs

pass...

lol I was thinking about during my last post. What a grand thought! Carole,

who will probably need the pass for myself by then :-)

[Guest guest]

---

> And you are right. When I retired from medicine 8 months pregnant,

> I never dreamed I would EVER be doing this. I plan to retire again,

> once a lot of our children are OK, then we can all go to

> DisneyWorld.

>

> Amy

>

>

>

>Amy,

Along with I am grateful that you came back to practice

medicine

to help our children. For you personally I am sad that things turned

out this way for you...as you waited a long time for a child and

planned to be a SAHM after your was born.

As a former teacher and now homeschooling mom, I have to say I know

more about medicine myself than I planned too :-)

Again I am grateful that you are not only my boys doctor but that you

truly want to help as many children as you can ....its a wonderful

thing that you, Dr. Jane and others in this field take them time to

be

on these lists to answer our questions!

Sharon Howell

Baton Rouge,LA

PS: Looking forward to meeting all of your with our recovered

children at Disneyworld! Imagine...not even needing a special needs

pass...let's us dream...work hard...and make this dream of recovered

kids and mercury-free vaccines

[Guest guest]

I cannot stand this and agree with Carole almost 100 %. Except for adding this

-

Their are many things worse than " false hope " , probably the worst being FALSE

DESPAIR or FALSE DEFEAT or FALSE ACCEPTANCE or FALSE RELUCTANCE or GIVING IN

or...... or ..... or ..... or.....

Much love to all you wonderful people who have not fallen into any of these

traps, or, at least, only temporarily. Ken

Lulu1958@... wrote:

> In a message dated 07/28/2000 10:02:12 PM Eastern Daylight Time,

> aholmesmd@... writes:

>

> << Andy, I think one of the worst things a physician can do is to

> purposely give parents false hopes. So I try to understate the

> prognosis, and if the child does better than I think he will - GREAT!

> There is nothing better than a nice surprise.

> >>

>

> Amy, I truly respect your honesty, on the other hand I highly resented not

> getting a clear and accurate picture of what to expect with my son. First

> doctor after doctor pussy footed around with diagnosis. What is their problem

> with saying " he is autistic " . Then I never was given information about what

> to expect. This happened with all the doctors I went to, even the ped-neuro.

> Why for 3-4 years I believed my son was going to be okay because I drove

> 45mins a day to speech and OT therapy. I actually told these doctors to

> please share the truth with me. I would not have had such ugly surprises down

> the road. I think most parents can deal with the truth. We may need a little

> time to deal with initial grief, but that's about it. I would have done

> things differently had I known. I would have looked at different

> interventions. Made plans on how to handle my child in the future. I think

> you get the picture. Why do doctors feel they need to make these choices for

> parents? Carole

>

>

>

>

[Guest guest]

<< I agree with you entirely, Carole, Doctors have no right to pussy-foot

around, knowing the score can make a world of difference. >>

We are back to the fundamental problem of MD style physicians being

indoctrinated that they are the right person to make the decisions for others.

The person making the decisions needs all available information so they can

make the best decision. Not being completely open and honest with patients

changes the decisions they make by changing the information they have to make

a decision and thus in effect is making their decision for them.

It is the patient's right to make the decisions, and thus the doctor's

obligation to convey all available information, no matter how unpleasant.

Andy Cutler

[Guest guest]

Dear Andy,

I tend to agree with this and have to because my child is 9. We have seen and

heard of tremendous improvements in older children ex. Megson's treatment of

a 10 year old boy who regained language. The reason for such improvements is

that the problems were not structural but instead biochemical. Chemical

changes can produce great improvements regardless of age. It is still unclear

how much of autism is due to neuronal damage and how much is due to blocked

receptors and decreased neurotransmitters. I think the latter will be found

to account for a significant part of the disease and that mercury is

interfering a great deal in this area. So we chelate with optimism and hope.

Ken Sokolski

[Guest guest]

Dear ,

If speech can come and go so quickly as you describe with your secretin

experiences, this suggests to me that the problem is not " hard-wired " i.e.

involved with neuronal damage. It may instead be more related to biochemical

abnormalities or abnormal brain wave activity. We have seen speech come and

go in our nine year old LKS child. Three weeks ago he said " Go swimming

Daddy " with perfect pronounciation. This week he was back to one word

statements. With something that variable, I have to believe the wiring

(neuronal connections) are in place and would wonder if that isn't also true

for your son.

Ken Sokolski

[Guest guest]

One thing I would like to address to the parents of older children.

My son is nine years old and diagnosed as autistic spectrum disorder. We

started chelating with DMSA-SR using Dr. Holmes protocol about six weeks ago.

On the first chelation we obtained 4.9 micrograms/gram Creatinine (ref. range

0-3) and elevated lead, arsenic, alluminum, and tin. I had read " Turning Lead

Into Gold " three years ago and had been removing lead with cuprimine but

after talking with Dr. Zigurts Strauts, was not given the appropriate use of

DMSA and couldn't get anything out. We were using the regular drug three

times a day and not measuring anything. So we gave up at that time. That was

three years ago when my son was six. The technology and the understanding

just wasn't there at the time unfortunately. But here we are again and we

have not given up. What have we seen? During chelations my son is irritable,

tired, doesn't want to eat, agitated, crying. Between chelations he is more

alert, talking more, understanding better, doing things he has never done

before. Will he recover from this treatment? I don't know but he is getting

better. He has had seizure activity in his brain most of his life and I

believe it is caused by the mercury or a reaction to it. It doesn't respond

to any antiseizure treatment, even surgery. If we can control this activity,

who knows what might be possible.

I just wanted to relay our story because I think parents of older kids have

reasons to be hopeful and should not give up in their search for help for

their children.

Ken Sokolski

[Guest guest]

<< had been removing lead with cuprimine >>

It surprises me that cuprimine would remove lead. Do you have some source

other than physician statements that suggests it does?

Andy Cutler

[Guest guest]

>From: Lulu1958@...

>Reply- egroups

> egroups

>Subject: Re: [ ] Discussion of prognosis

>Date: Sat, 29 Jul 2000 08:24:35 EDT

>

>In a message dated 07/28/2000 10:02:12 PM Eastern Daylight Time,

>aholmesmd@... writes:

>

><< Andy, I think one of the worst things a physician can do is to

> purposely give parents false hopes. So I try to understate the

> prognosis, and if the child does better than I think he will - GREAT!

> There is nothing better than a nice surprise.

> >>

>

>Amy, I truly respect your honesty, on the other hand I highly resented not

>getting a clear and accurate picture of what to expect with my son. First

>doctor after doctor pussy footed around with diagnosis. What is their

>problem

>with saying " he is autistic " . Then I never was given information about what

>to expect. This happened with all the doctors I went to, even the

>ped-neuro.

>Why for 3-4 years I believed my son was going to be okay because I drove

>45mins a day to speech and OT therapy. I actually told these doctors to

>please share the truth with me. I would not have had such ugly surprises

>down

>the road. I think most parents can deal with the truth. We may need a

>little

>time to deal with initial grief, but that's about it. I would have done

>things differently had I known. I would have looked at different

>interventions. Made plans on how to handle my child in the future. I think

>you get the picture. Why do doctors feel they need to make these choices

>for

>parents? Carole

I agree with you entirely, Carole, Doctors have no right to pussy-foot

around, knowing the score can make a world of difference.

Bestw wishes,

Margaret.

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[Guest guest]

Amy, Jane, Andy,

Ditto also!!!

You are making humongous differences in many many lives!!!! What a

generous thing you are doing to participate on these lists!

Thank you, Thank you, Thank you and Thank you.....and Thank

you...etcetera!!!

Dr. Amy, it's great to have you back and wonderful to hear about your

boy! Congratulations!!!!

Chris

On Sat, 29 Jul 2000 08:52:39 EDT Lulu1958@... writes:

> << .its a wonderful

> thing that you, Dr. Jane and others in this field take them time to

> be

> on these lists to answer our questions!

> Sharon Howell

> Baton Rouge,LA

>

> Ditto, what she said!

>

> PS: Looking forward to meeting all of your with our recovered

> children at Disneyworld! Imagine...not even needing a special

> needs

> pass...

>

> lol I was thinking about during my last post. What a grand thought!

> Carole,

> who will probably need the pass for myself by then :-)

>

>

>

>

[Guest guest]

In " Turning Lead Into Gold " I believe that is what they were using. I'll try

to get my hands on the book again to verify.

Ken Sokolski

[Guest guest]

In a message dated 07/29/2000 7:52:42 PM Eastern Daylight Time,

KKSOKOLSKI@... writes:

<<

I just wanted to relay our story because I think parents of older kids have

reasons to be hopeful and should not give up in their search for help for

their children.

Ken Sokolski

>>

Thanks Ken. I also have an older child, 12. Several years ago a doctor tried

some DMSA with him too. I am trying to remember how he ordered it, something

like once aweek 100mg. I gave it once. My son reacted so badly to it I did

not give it again. There just wan't any information out there for us at the

time. Not where we looked anyway. Well now 4-5 years later we are chelating

him like crazy with high hopes. We are seeing good stuff. As far as I'm

concerned any good changes are great changes for my very low functioning son.

Take care. Carole

[Guest guest]

Dear Carole,

Thanks for your note. I think the important thing is to stay on track. No one

knows what the results will be but we have to keep trying.

Ken

[Guest guest]

In a message dated 7/28/00 1:23:23 PM Eastern Daylight Time,

kblanco@... writes:

<< we also knew

that he was having problems with even eating because his TONSILS were so

large that he could hardly take a few seconds to swallow and breath and

relax while eating-let alone talk). >>

When we started trying to chelate mercury last year, we had two things that

came up. First we observed pinworms which we think had been there

undiagnosed for several years (bowel function improved and we physically saw

them). Second, our doctor told us that her tonsils we so enlarged that they

should be treated. He used a homeopathic mixture called tonsilla, which

seems to have worked.

Has anyone else had experience with enlarged tonsils?

When our daughter was 2, she had a myringotemy and had her adenoids removed,

at that time the tonsils were enlarged, but the ENT felt that they should be

left alone.

Joe Marciano

[Guest guest]

Joe,

Since chelation we are noticing constipation with keith, and what i

think are pinworms. What and where did you notice them on your child.

thanks

crystal

[Guest guest]

> In a message dated 7/28/00 1:23:23 PM Eastern Daylight Time,

> kblanco@m... writes:

>

> << we also knew

> that he was having problems with even eating because his TONSILS

were so

> large that he could hardly take a few seconds to swallow and

breath and

> relax while eating-let alone talk). >>

>

> When we started trying to chelate mercury last year, we had two

things that

> came up. First we observed pinworms which we think had been there

> undiagnosed for several years (bowel function improved and we

physically saw

> them). Second, our doctor told us that her tonsils we so enlarged

that they

> should be treated. He used a homeopathic mixture called tonsilla,

which

> seems to have worked.

>

> Has anyone else had experience with enlarged tonsils?

> When our daughter was 2, she had a myringotemy and had her adenoids

removed,

> at that time the tonsils were enlarged, but the ENT felt that they

should be

> left alone.

>

> Joe Marciano

Joe--

My son had his tonsils and adenoids removed in March of '99, which

was just after he turned three. I was so ignorant then. I knew

enough to ask why the tonsils and adenoids were so enlarged when he

did not have a history of sinus infections, but I did not push the

doctors when they came back with their vague answers. The physician

assistant actually told me that his large tonsils were probably

inherited from me (I had mine removed when I was five). I asked

repeatedly if the problem could in any way be connected to his

developmental delays. They said " no. " If I had known then what I

know now, the surgeon would never have touched my son. Instead, I

would have started chelation immediately.

Kristi

[Guest guest]

do tonsils get tweeked by mercury, or is this the immune

impairment part of autism?

Kathy

[ ] Re: Discussion of prognosis

>

>> In a message dated 7/28/00 1:23:23 PM Eastern Daylight Time,

>> kblanco@m... writes:

>>

>> << we also knew

>> that he was having problems with even eating because his TONSILS

>were so

>> large that he could hardly take a few seconds to swallow and

>breath and

>> relax while eating-let alone talk). >>

>>

>> When we started trying to chelate mercury last year, we had two

>things that

>> came up. First we observed pinworms which we think had been there

>> undiagnosed for several years (bowel function improved and we

>physically saw

>> them). Second, our doctor told us that her tonsils we so enlarged

>that they

>> should be treated. He used a homeopathic mixture called tonsilla,

>which

>> seems to have worked.

>>

>> Has anyone else had experience with enlarged tonsils?

>> When our daughter was 2, she had a myringotemy and had her adenoids

>removed,

>> at that time the tonsils were enlarged, but the ENT felt that they

>should be

>> left alone.

>>

>> Joe Marciano

>

>

>Joe--

>

>My son had his tonsils and adenoids removed in March of '99, which

>was just after he turned three. I was so ignorant then. I knew

>enough to ask why the tonsils and adenoids were so enlarged when he

>did not have a history of sinus infections, but I did not push the

>doctors when they came back with their vague answers. The physician

>assistant actually told me that his large tonsils were probably

>inherited from me (I had mine removed when I was five). I asked

>repeatedly if the problem could in any way be connected to his

>developmental delays. They said " no. " If I had known then what I

>know now, the surgeon would never have touched my son. Instead, I

>would have started chelation immediately.

>

>Kristi

>

>

>

>

>

[Guest guest]

tonsilla heh? That's a new one, do you know where I can get some?

Kathy

Re: [ ] Re: Discussion of prognosis

>In a message dated 7/28/00 1:23:23 PM Eastern Daylight Time,

>kblanco@... writes:

>

><< we also knew

> that he was having problems with even eating because his TONSILS were so

> large that he could hardly take a few seconds to swallow and breath and

> relax while eating-let alone talk). >>

>

>When we started trying to chelate mercury last year, we had two things that

>came up. First we observed pinworms which we think had been there

>undiagnosed for several years (bowel function improved and we physically

saw

>them). Second, our doctor told us that her tonsils we so enlarged that

they

>should be treated. He used a homeopathic mixture called tonsilla, which

>seems to have worked.

>

>Has anyone else had experience with enlarged tonsils?

>When our daughter was 2, she had a myringotemy and had her adenoids

removed,

>at that time the tonsils were enlarged, but the ENT felt that they should

be

>left alone.

>

>Joe Marciano

>

>

>

>

[Guest guest]

Hi Ken

Thanks for those encouraging words - we too have a 9-year-old AS son and as

I only stumbled on the mercury connection relatively recently, we are also

hoping that it's not too late and that at least part of the problem is a

chemical imbalance of sorts. At present we are trying to find out whether we

can have the relevant tests done here in S. Africa or whether we will need

to approach labs in the USA.

We will join you in your optimism and hope!

Best wishes to all

Anne B.

Re: [ ] Discussion of prognosis

>Dear Andy,

>I tend to agree with this and have to because my child is 9. We have seen

and

>heard of tremendous improvements in older children ex. Megson's treatment

of

>a 10 year old boy who regained language. The reason for such improvements

is

>that the problems were not structural but instead biochemical. Chemical

>changes can produce great improvements regardless of age. It is still

unclear

>how much of autism is due to neuronal damage and how much is due to blocked

>receptors and decreased neurotransmitters. I think the latter will be found

>to account for a significant part of the disease and that mercury is

>interfering a great deal in this area. So we chelate with optimism and

hope.

>Ken Sokolski

>

>

>

>

[Guest guest]

In a message dated 7/28/00 11:36:44 PM Eastern Daylight Time,

aholmesmd@... writes:

<< I plan to retire again,

once a lot of our children are OK, then we can all go to

Disney World. >>

Given the potential for the number of people who might attend, we may have to

book the whole park for the whole season, and charge the cost to the CDC, as

a remedial therapy.

Joe Marciano

[Guest guest]

In a message dated 7/28/00 11:53:36 PM Eastern Daylight Time,

AndyCutler@... writes:

<< Yes. Dr. Edelson proved that some autistic children can be cured by

detoxification. >>

I'm just curious, did Dr. Edelson link autism, mercury and vaccinations?

I know that the DAN protocol listed heavy metals, but I was not aware of the

link with thimerosal until the joint statement of the CDC and AAP was made in

July of 1999. It sounds like Dr. Edelson had been doing this for several

years. Did he use alpha lipoic acid? If not, then comparing his studies to

what we are all trying to do would be like comparing the flight speed of fish

to birds. Occasionally a fish does jump out of the water.

Joe Marciano

[Guest guest]

In a message dated 7/31/00 10:46:26 PM Eastern Daylight Time, csac27@...

writes:

<< Since chelation we are noticing constipation with keith, and what i

think are pinworms. What and where did you notice them on your child.

>>

I first saw them when she had a late night bowel movement, they look like

little white threads, but they move. We then read up on pinworms, and found

that they will appear around the anus when a person is sleeping. The test is

to use a piece of scotch tape and pick them up and visually observe them.

You have to treat the whole family, each with a single pill that doctors

prescribe without needing to see the person (pinworms are very common). In

our daughter's case, I went back and looked at her original great smokies

stool sample, which indicated she had a possible helminthic infection

(helminth is greek for worms) almost 3 years prior to this! Oddly enough

when we ran a diagnostic follow up stool test, and I physically put a worm

with the stool sample into each of the vials. The lab test came back with

" no ova or parasites seen. " After this we have relied on tests very little.

Basic physical observations seem to be more accurate.

Joe Marciano

[Guest guest]

In a message dated 8/1/00 10:32:07 PM Central Daylight Time,

aholmesmd@... writes:

<< he uses DMPS IV also. <shudder>. But, he has obtained

some good results, but these results have not been consistent in

all children. Personally, I think his use of the non-outgassing

sauna has contributed greatly to his good results when they have

occurred. >>

Besides the DMPS and the sauna, are there any other things in his protocol

that might be worth investigating? Any idea on his specific protocol for the

sauna? I read over his website but didn't see any particulars on the

protocol used with the kids in the case studies. I think that would be very

interesting and also interesting to see how the kids who didn't respond

differed with the ones who did. Did he give you any insight into this?

Gaylen