Re: chelation protocols aren't all the same!

July 19, 2002

> This may just seem like semantics, but a diagnosis of " autism " isn't

really

> all that meaningful because it simply describes a set of behaviors.

Autism

> is a syndrome, not a disease. That's why many physicians use the

term

> " autism spectrum disorder. " From what you have described your son

isn't

> classically autistic, but he is on the spectrum.

>

> Your son sounds a lot like my son. The neuropsych says he is not

autistic,

> yet he also has a host of autistic tendencies and is high

functioning. At

> this point, I am well beyond concerning myself with labels. We also

read

> Doris Rapp's book and then called her office for a referral. We were

sent to

> her friend in California, Wakefield for testing. Now we're

seeing Dr.

> McCandless and are getting ready for chelation.

>

> As far as know (I'm no chelation expert), that our sons are high

functioning

> does not make a difference in determining their chelation protocol.

Correct.

> The DAN!

> protocol was developed to minimize risk of organ damage and maximize

metal

> detoxification.

The DAN! protocol was not developed with any concern for any of these

things. A few doc's started chelating people with DMSA and ALA on an

every 4 hour protocol and got good results. Then they showed up at

the DAN! think tank and everyone was really excited and decided to use

DMSA and ALA even though most of the doc's there had never used this

combination before. But the doc's who had used it and got these great

results had been having to spend a lot of time arguing with parents to

get them to get up in the middle of the night, so all the doc's there

decided that since none of them understood why it should make any

difference, that it must not, and every 8 hours would be fine. Of

course it isn't (See poll results in the polls section) but then it is

unreasonable to expect them to develop a rational protocol when very

few of them had been doing it with ALA and DMSA despite years of

experience in chelation, and none of them even knew why it made a

difference how often chelators are given.

In fact, most versions of the DAN! protocol as prescribed by DAN!

doctors are quite harmful to the child's brain and gastrointestinal

tract which is why they talk a lot about a healing crisis.

>

> I look forward to hearing how your son does with IV chelations as

I'm

> interested in all perspectives.

I certainly hope you are lucky enough that you don't generate another

story to go on www.dmpsbackfire.com. Chelation can be DANGEROUS if

done improperly. DMPS injections are about the least proper way to do

it I can imagine. . . . .. . .

July 19, 2002

Andy--

Comments like the one you made below make it so apparent that you do

not have an autistic child! We as parents are willing to stay up

every night if possible-- and the majority of parents would get up

every two hours if it meant recovering our kids. What parents were

arguing with what doctors? And how would you know that? Have you

ever been to ANY of the DAN! seminars? Conferences? Think Tanks??

You truly underestimate the power of the love a parent has for a

child, especially a special needs one - and you really should not

speak of what you don't understand.

Maranie

( who is a little grumpy and tired of being underestimated!!! )

--- In @y..., " andrewhallcutler " <AndyCutler@a...>

. But the doc's who had used it and got these great

> results had been having to spend a lot of time arguing with parents

to

> get them to get up in the middle of the night, so all the doc's

there

> decided that since none of them understood why it should make any

> difference, that it must not, and every 8 hours would be

fine> . . .. . .

July 19, 2002

> Andy--

>

> Comments like the one you made below make it so apparent that you do

> not have an autistic child!

I got up in the middle of the night to chelate my girlfriend's child.

I got up in the middle of the night to chelate myself.

I have no real trouble convincing most people to get up in the middle

of the night to chelate either themselves or their child based on the

relative amount of suffering from that, and from the predictable and

avoidable problems sleeping through brings.

The doc I work with has found it is quite easy to get people to wake

up and chelate - instead of letting them get wrapped around the axle

about how HORRIBLE waking up was, he simply asks them if they ever get

up at night to go to the bathroom, or assorted other things. Of

course they all do at times. Then he points out that getting up and

chelating isn't any harder than that and the light bulb goes on that

they have an emotional problem with someone telling them to get up,

not any kind of real problem with being able to do it if there is a

reason.

Also, I must say that I was willing to get up to chelate someone

else's child beccause I know how important it is, and what the

negative effect of not doing it is. Since most parents do care dearly

for their children I see the problem as one of the benefits of

chelating through the night not being properly conveyed to the

parents, all of whom would do almost any horrific thing if it really

would get their child better. They just don't beleive that getting up

at night is necessary when a doctor who hasn't bothered to study their

chelation protocol well enough to understand why it is done that way

tells them half heartedly that it is important.

Of course then we have the debate on this list which I would have

thought would have ended a couple of years ago when we had a LARGE

number of reports (reflected in the polls section) by parents who Dr.

Amy and others informally and unintentionally enrolled in a crossover

trial of the two protocols - most children were getting better on the

every 4 hour protocol, were changed to every 8 hours and saw them get

worse again, then switched back to every 4 hours on their own and saw

improvements resume. Sane people get the message from this -

experiments have proven that most children do much better on more

frequent dosing that requires getting up at night. The only real

question in each individual case is does a specific child require

this, and the only real way to answer that is to try it both ways.

So, Maranie, have you tried it both ways with your child? What were

the results? Or is the thought of getting up at night so horrifying

that you haven't even given it a try to find out if the benefits

outweigh the costs in your child's case?

> We as parents are willing to stay up

> every night if possible-- and the majority of parents would get up

> every two hours if it meant recovering our kids.

I agree. Which makes it amazing to me how many never give frequent

dosing a try because they get upset about doing something that is

easier than getting up to pee.

> What parents were arguing with what doctors?

This is a direct report to me by Dr. Amy about why she changed. She

told me that she spent about half an hour on average trying to

convince the parents to get up at night. I find this credible.

> And how would you know that? Have you

> ever been to ANY of the DAN! seminars? Conferences? Think Tanks??

>

> You truly underestimate the power of the love a parent has for a

> child, especially a special needs one - and you really should not

> speak of what you don't understand.

I understand quite well, Maranie, and I do have an appreciation for

the love most parents have for their children, the surprisingly short

limits a few parents have on what they will do for their children, and

people's needs to get emotional and find excuses to argue instead of

just doing what is necessary.

Have you tried both 8 hour and frequent dosing with your child? As

you know there are reports of a few children who do better on every 8

hour dosing and I have always agreed (3 cases I know of so far) that

they should stick with the protocol that was working for their child.

There are other parents on list who for whatever reason have found

that their child is making at least some progress on 8 hour dosing,

and for whatever reason don't want to try or use more frequent dosing.

None of them seem to feel compelled to place the argument in terms of

whether they love their child or whether I am an unfeeling ogre who

can't possibly understand what it is to love an impaired child.

>

> Maranie

> ( who is a little grumpy and tired of being underestimated!!! )

I don't think I underestimate either your ability to argue. Nor do I

underestimate the willingness of most parents to get up at night if it

will help their child get better. Most are more than willing to do

this.

And to quote you again:

> We as parents are willing to stay up

> every night if possible-- and the majority of parents would get up

> every two hours if it meant recovering our kids.

For most children the difference between a real chance at recovery and

some modest progress in fact is getting up to chelate them every 3 or

4 hours at night. You state that you believe most parents would do

much more than this. I agree, MOST parents will. Some won't. But

none of them will give it a try unless the relative merits of 8 hour

and more frequent chelation are spelled out to them.

So I ask again: have you tried 3-4 hour dosing a couple of times? How

did your child do? That is the only real test of whether you need to

get up at night. If he did better on every 3-4 hour dosing then a

caring parent will get up regardless of how icky it seems to do so.

If he did just as well, or better, on 8 hour dosing then there is no

reason to torture yourself getting up at night and I wouldn't

encourage you to continue doing it if clearly not necessary any more

than your doc

July 20, 2002

wrote:

> -Message: 18

> Date: Fri, 19 Jul 2002 18:51:14 -0000

> From: " andrewhallcutler " <AndyCutler@...>

> Subject: Re: chelation protocols aren't all the same!

>

> > Andy--

> " Then he points out that getting up and

> chelating isn't any harder than that and the light bulb goes on that

> they have an emotional problem with someone telling them to get up,

> not any kind of real problem with being able to do it if there is a

> reason. "

>

so true, I agree with you here.

>

> > We as parents are willing to stay up

> > every night if possible-- and the majority of parents would get up

> > every two hours if it meant recovering our kids.

>

> I agree. Which makes it amazing to me how many never give frequent

> dosing a try because they get upset about doing something that is

> easier than getting up to pee.

>

Andy, please come to my house tonight at 4am (CST) and tell me it's as easy as

taking a pee.

our son isnt 3 yet and does not take pills.

It's really not so bad because we have adapted

I get it ready at 12AM

I take a dab of applesauce or mashed mango and mix it with filtered or distilled

water.

(it draws better mixed with some water)

I draw up 1-2ml in a medicine syringe and dispose of the rest.

I put the 2ml applesauce/water mix into a small container

add succimer/ALA

a drop of kirkman's cherry flavoring

(optional) at times Ive had to add 0.5mg of melatonin

maybe another drop of water

draw it back up into the syringe

store in frig till 4AM

IF he has his head right when he's sleeping, it's as easy as walking into the

kitchen to get a snack or drink

I just walk right in squirt it into his mouth and go back to bed

keeping the total amount to just 2-3ml keeps him from gagging and waking

do it quick and he swallows almost involuntarily

If he doesn't have his head right, you give it slow or you give him more than

4ml...

there have been a few times he wouldnt go back to sleep

July 20, 2002

> I take a dab of applesauce or mashed mango and mix it with filtered

or distilled water.

> (it draws better mixed with some water)

> I draw up 1-2ml in a medicine syringe and dispose of the rest.

I used yoghurt with the stuff sprinkled on top and more yoghurt on top

of that.

Andy . . .. .

July 20, 2002

For me, I'd say it's about twice the difficulty of a

pee; so about the same as a pee-pee (ba boom BOOM)

Seriously, we've found a simple recipe that makes the

DMSA acceptable is to just mix it with a citrus drink

(we use Five-Alive). We use a 10cc syringe with the

threaded tip, a butterfly needle that has been cut up

so that all that remains is 3/4 inches or so of hose

to screw to the end of the syringe, and a 3 tsp

measuring cup (or better yet a mini squirt bottle).

So alarm goes off at 4:26 AM (say)... I go to the

kitchen, take out a DMSA capsule from the container,

and pour 1 tsp juice into measuring cup. I then

pickup the syringe (without the plunger) and hold it

so that the tip of my pinkie dams up the tip and in

such a way that I still have limited use of my index

finger and thumb of that same hand. I then pour about

half the juice in the syringe, followed by opening and

pouring the DMSA capsule contents (using my free hand

and the limited assistance from my index finger and

thumb of the hand plugging up the syringe), followed

by the rest of the juice. I then replace the plunger

part way and shake to mix. Lastly, I screw on the

hose remnants of my butterfly. At this time I refill

my measuring cup with water.

I take my DMSA mixture and the water in the measuring

cup to my son's room. I find he has to be lying on

his back in order to avoid spillage, and strangely

enough I usually have better luck if he is not already

on his back when I find him because the turning him

over wakes him up just enough to dose him easily. If

he is on his back already, I rub his cheek or some

such to just start to wake him up. He needs to be

just conscious enough to effectively 'ask' for the

medicine (when he feels the little hose on his lips)

by opening his mouth and swallowing when I give it to

him. I usually give it to him in stages so he gets

about 1/2 tsp per swallow. After getting all the DMSA

into him, I suck up water from the measuring cup into

the syringe and give him a good 1 1/2 tsp or so to

both rinse his mouth a little and to catch any last

bits of DMSA that may have remained in the syringe.

Finally, I return to the kitchen and rinse all the

items out and place them on a towel to dry and be

ready to go for the subsequent dose.

Back in bed by around 4:32 usually...

Sorry this is so long, but now I have it recorded for

when night dosing questions come up.

Max

> Andy, please come to my house tonight at 4am (CST)

> and tell me it's as easy as taking a pee.

> our son isnt 3 yet and does not take pills.

>

> It's really not so bad because we have adapted

>

> I get it ready at 12AM

>

> I take a dab of applesauce or mashed mango and mix

> it with filtered or distilled water.

> (it draws better mixed with some water)

> I draw up 1-2ml in a medicine syringe and dispose of

> the rest.

>

> I put the 2ml applesauce/water mix into a small

> container

> add succimer/ALA

> a drop of kirkman's cherry flavoring

> (optional) at times Ive had to add 0.5mg of

> melatonin

> maybe another drop of water

> draw it back up into the syringe

> store in frig till 4AM

>

> IF he has his head right when he's sleeping, it's as

> easy as walking into the kitchen to get a snack or

> drink

> I just walk right in squirt it into his mouth and go

> back to bed

> keeping the total amount to just 2-3ml keeps him

> from gagging and waking

> do it quick and he swallows almost involuntarily

>

> If he doesn't have his head right, you give it slow

> or you give him more than 4ml...

> there have been a few times he wouldnt go back to

> sleep

>

__________________________________________________

July 21, 2002

Hi,

my is 4 and high functioning( i don't know to much about this term and whatt it

involves but my started reading since he was 31/2 years old now at 4 he tries

to read anything) he learns very quickly but going step by step his

socialization with other children still poor. any ideas on this.

i am like you trying to decide about chelation and it scares me so much, we got

his hair analysis results and it is very bad news a lot of toxic metals. any

info on chelation as what shoud be checked prior going to chelate will help.

thanks.

silvia

andrewhallcutler <AndyCutler@...> wrote: