Re: Lorilyn/Mag Malate/Size of Time Released Chemet?

[Guest guest]

Lorilyn,

You have spoken with Amy a lot. Is the Mag Malate dose really only 200 mg

as it says on my copy of the protocol? Or is it 1000 mg with 200 magnesium

only? I have the Source Natural 1000 (seemed to be the only dose of that

brand) and they ARE huge. I have been cutting them. (I bought my pill

cutter everyone can sleep better tonight...) Can you please check this?

Thanks,

Heidi

[ ] Phone/Address of Time Released Chemet

> >

> >

> > > Hi, the address and phone of the compounding pharmacist here in Baton

> > Rouge

> > > that makes the time released DMSA (Chemet) suppositories and capsules

> is:

> > >

> > > Prescription Compounds

> > > 7414 Picardy Avenue, Suite C

> > > Baton Rouge, LA 70808

> > > 225-766-9577

> > > 1-888-876-8778

> > >

> > > Pharmacist/Owner: Patsy Angelle

> > >

> > > Patsy said to ask for Long Acting DMSA Suppositories or Slow Release

> DMSA

> > > Capsules.

> > >

> > > This has really improved our administration of Chemet. We only have

to

> > put

> > > in a suppository every 8 hours instead of every four (cant get our

child

> > to

> > > take capsules yet). Chelating out our 4 year old autistic sons

mercury

> > has

> > > been the one therapy that has done the most (even over ABA, Secretin,

> > diet,

> > > supplements) We do all the others but every time we take out his

mercury

> > it

> > > is an immediate positive change in his behavior and awareness of his

> > > environment. He comes back to us faster with this intervention than

> with

> > any

> > > of the others. Dont get me wrong I whole heartedly think the diet and

> > > educational interventions are important and I wont stop them but until

> we

> > get

> > > out the mercury and other toxins out of his brain, he wont be able to

> > think

> > > clearly enough to make the gains we feel will make him

> " indistinguishable

> > > from his peers. " Which is what we all pray for. Cessna

> > >

> > >

> > >

> > >

[Guest guest]

I have Amy's protocol, and spoke with her nurse last week but haven't been

in contact with Amy as much as you think! She is one busy doctor. Amy and

Jane were at the DAN! think tank last weekend, busy before getting ready,

busy after catching up.

I, too, bought the big ol' Source Naturals Mag Malate 1000mg that is 200 mg

of magnesium. I figured that this is what she meant, since she named that

brand and this is what they make. Only I don't cut my pills.

Lorilyn

Re: [ ] Lorilyn/Mag Malate/Size of Time Released

Chemet?

> Lorilyn,

>

> You have spoken with Amy a lot. Is the Mag Malate dose really only 200 mg

> as it says on my copy of the protocol? Or is it 1000 mg with 200

magnesium

> only? I have the Source Natural 1000 (seemed to be the only dose of that

> brand) and they ARE huge. I have been cutting them. (I bought my pill

> cutter everyone can sleep better tonight...) Can you please check this?

>

> Thanks,

> Heidi

>

>

>

[Guest guest]

And Elliot swallows that mag malate pill? I've been cutting and crushing.

Heidi

Re: [ ] Lorilyn/Mag Malate/Size of Time Released

> Chemet?

>

>

> > Lorilyn,

> >

> > You have spoken with Amy a lot. Is the Mag Malate dose really only 200

mg

> > as it says on my copy of the protocol? Or is it 1000 mg with 200

> magnesium

> > only? I have the Source Natural 1000 (seemed to be the only dose of

that

> > brand) and they ARE huge. I have been cutting them. (I bought my pill

> > cutter everyone can sleep better tonight...) Can you please check

this?

> >

> > Thanks,

> > Heidi

> >

> >

> >

>

>

>

>

>

>

[Guest guest]

> And Elliot swallows that mag malate pill? I've been cutting and crushing.

Oh yeah. He is a wonder. Can swallow gelatin pills dry, too. I can't do

that. I can't tell you how happy I am that we chased him around the house

with greased pills for a week or two, five years ago, until he learned to

swallow them. Now my only fear is that someone evil person will say " here

Elliot swallow this " and he will very cooperatively comply. :^)

Lorilyn

[Guest guest]

Lorilyn,

Hi, I read your post about greasing the pill..that sounds interesting, I

guess it would make it slide down alot easier, what did you use, cooking oil?

thanks, Val

[Guest guest]

Oh, my god, that pill is huge, I'm not sure I could swallow it.

What did you grease the capsules with? And, is it just a matter of practice

or any trick to placement? Was Elliot verbal when he learned to swallow the

pills? I am fearful that does not have enough control as he has such

difficulty saying words.

Heidi

Re: [ ] Lorilyn/Mag Malate/Size of Time Released

Chemet?

> > And Elliot swallows that mag malate pill? I've been cutting and

crushing.

>

> Oh yeah. He is a wonder. Can swallow gelatin pills dry, too. I can't do

> that. I can't tell you how happy I am that we chased him around the house

> with greased pills for a week or two, five years ago, until he learned to

> swallow them. Now my only fear is that someone evil person will say " here

> Elliot swallow this " and he will very cooperatively comply. :^)

> Lorilyn

>

>

>

>

>

>

[Guest guest]

<< gfcf margarine. >>

I do hope this does not contain hydrogenated or partially hydrogenated oils

as those are something that should always be excluded from any " autistic

spectrum " child's diet.

Andy

[Guest guest]

Hi Lorilyn,

Well, I spent most of the afternoon trying the margarine idea. It sounds

great, but maybe I am doing it wrong. I coated it with the margarine, and put

it on a spoon with and without pearsause and he still spits it out. I can't

get him to open his mouth wide enough to get it to the back of his mouth. Am

I supposed to put in in a larger amt. of margarine, so it's completly covered

in it? Not on a spoon? Any other suggestions you might have would be greatly

appreciated..oh, the things we do! I think we're going to have to do

suppositories. Thanks, Val

[Guest guest]

<< What DOES seem to work is giving Kenny a tiny bit of ice cream (which he is

NEVER allowed to have otherwise) with the capsule, followed by another tiny

ice

cream " chaser " . >>

The new " sorbet " stuff at the grocery store is dairy free and a reasonable

ice cream substitute.

Andy

[Guest guest]

How about coconut butter? I don't think that is a trans fatty item. Andy?

Although I can't imagine swallowing a bib blob of it would be too much

fun..Val

[Guest guest]

> Hi, I read your post about greasing the pill..that sounds interesting, I

> guess it would make it slide down alot easier, what did you use, cooking

oil?

> thanks, Val

gfcf margarine. a trick from giving pills to dogs!

Lorilyn

[Guest guest]

<< How about coconut butter? I don't think that is a trans fatty item. Andy?

>>

Correct.

Andy

[Guest guest]

Elliot was 5 or 6 at the time, and spoke a few words here and there. We

greased the pills with margarine (might have used butter, that was pre

gfcf), put them as far back on his tongue as we could, held his mouth shut

and told him to swallow. It took two adults and a few days before he

realized it was going to happen and that he ought to get with the program.

We were trying to get very nasty powdered Nystatin down him, and pills

seemed the only option. I don't still butter his pills, of course! And

always give him a liquid after the pills if not used to swallow.

But since then, people have posted of ABA ways of teaching pill-swallowing

that seem kinder if slower. You could start with tiny pills or candies or

empty capsules and work up.

Lorilyn

[Guest guest]

<< gfcf margarine. >>

I do hope this does not contain hydrogenated or partially hydrogenated oils

as those are something that should always be excluded from any " autistic

spectrum " child's diet.

Andy,

I wondered about that too. We couldn't find any suitable margarine that did not

have partially hydrogenated oils.

Also, we haven't had much luck with the " greased pill " either.

What DOES seem to work is giving Kenny a tiny bit of ice cream (which he is

NEVER allowed to have otherwise) with the capsule, followed by another tiny ice

cream " chaser " . I'm hoping we'll be able to fade this out eventually, but in my

mind, getting the stuff into him is more important than a small infringement of

the GFCF diet.

(I may also try freezing some of his lemonade into popsicles.)

(Cary, NC)

persistentC@...

[Guest guest]

<< without knowing specific peer-reviewed reasons why >>

There are no peer reviewed reasons for anything real that happens with

autistic kids. The purpose of medical peer review is to prevent science,

not assist it.

The SCIENTIFIC reasons are simple: the metabolic machinery that burns up

fats doesn't work so well in autistic and other poisoned people. It is much

more difficult for this machinery to burn trans fats (which in a chemical

sense get crossways across the gears) than to burn regular fats. Since most

people have excess capacity to burn fats this isn't a problem. For those who

only have marginal capacity the hydrogenated stuff builds up, prevents the

oxidation of other fats that need to be burned, and all this stuff then goes

where fat goes in your body - largely into cell membranes.

Andy Cutler

[Guest guest]

We taught Elliot to swallow pills back in our wicked days of nasty American

food. Four years ago, we went gfcf. Six months later, I removed most

hydrogenated fats because I was trying to see if he was sensitive to soy.

Surprise, his fatty acid portion of the Great Plains Lab test improved

markedly. We use maybe a couple of pounds of hydrogenated margarine a year,

mostly for birthday cake frosting.

I would be interested in knowing from a scientific angle, just why these

hydrogenated fats are worse for an autistic kid than for other kids. Of

course, they are horrible for everyone. But I have seen that fatty acid

issues are important for my son (trigger seizures, etc.) without knowing

specific peer-reviewed reasons why.

Lorilyn

Re: [ ] Lorilyn/Mag Malate/Size of Time Released

Chemet?

> << gfcf margarine. >>

>

> I do hope this does not contain hydrogenated or partially hydrogenated

oils

> as those are something that should always be excluded from any " autistic

> spectrum " child's diet.

>

> Andy

>

>

>

>

[Guest guest]

> We couldn't find any suitable margarine that did not

> have partially hydrogenated oils.

Spectrum Naturals spreads use " mayonnaise technology " to make

non-hydrogenated margarines. I have also used ghee, which is butter with

the casein removed, at least in theory.

> What DOES seem to work is giving Kenny a tiny bit of ice cream (which he

is

> NEVER allowed to have otherwise) with the capsule, followed by another

tiny ice

> cream " chaser " . I'm hoping we'll be able to fade this out eventually, but

in my

> mind, getting the stuff into him is more important than a small

infringement of

> the GFCF diet.

There are quite a few gfcf sorbets on the market, plus ice creams made with

soy, if your child can tolerate corn syrup. There are even a few that are

gfcf and don't contain corn syrup either. But this is the type of thing we

talk about on gfcfkids, so hustle on over there if you need to know more, or

write to me off list!

Lorilyn

>

[Guest guest]

<< What DOES seem to work is giving Kenny a tiny bit of ice cream (which he is

NEVER allowed to have otherwise) with the capsule, followed by another tiny

ice

cream " chaser " . >>

< The new " sorbet " stuff at the grocery store is dairy free and a reasonable

ice cream substitute. >

Except that it has CORN SYRUP which is even worse than casein as far as Kenny is

concerned.

(Cary, NC)

persistentC@...

[Guest guest]

> Hi Lorilyn,

> Well, I spent most of the afternoon trying the margarine idea. It sounds

> great, but maybe I am doing it wrong....

I will sound like a mean mom. (Remember, I said that ABA techniques sound

much nicer.)

I was practically in tears, and worried that the neighbors would report us

as abusers, the way my son screamed. We chased him down, one parent held

him, the other parent pried open his mouth and placed the pill --which had

been dipped in margarine or butter or something-- by hand, as far back on

his tongue as possible, held his mouth shut, and kept saying " swallow!

swallow! " . Eventually he did. But until that " eventually " came, it was

unpleasant for all concerned. In a day or two, he stopped screaming and

fighting once we caught him. A day or two after that, he figured it out.

Eventually, I could say " Elliot, here are your pills " and he would take them

all with no fighting. I can't recommend this for everyone, but it worked

for us. If this were the only way I could do chelation, and I thought

chelation had a good chance of being the best thing I could do for my son

(and I do think this) then I would do it again, no matter how difficult.

Luckily, though, we are years past having to teach pill swallowing!

Lorilyn

[Guest guest]

How about an herb crusher, crush down to a powder very fine and mix with a

drink of choice (a thick one like a slurpy) or a favorite slushy food

Kathy

Re: [ ] Lorilyn/Mag Malate/Size of Time Released

Chemet?

>Hi Lorilyn,

>Well, I spent most of the afternoon trying the margarine idea. It sounds

>great, but maybe I am doing it wrong. I coated it with the margarine, and

put

>it on a spoon with and without pearsause and he still spits it out. I can't

>get him to open his mouth wide enough to get it to the back of his mouth.

Am

>I supposed to put in in a larger amt. of margarine, so it's completly

covered

>in it? Not on a spoon? Any other suggestions you might have would be

greatly

>appreciated..oh, the things we do! I think we're going to have to do

>suppositories. Thanks, Val

>

>

>

>

[Guest guest]

Lauric acid, or food grade cocunut oil would be better (And I hear it works

wonders with

enveloping viruses such as measles in the gut)

Kathy

Re: [ ] Lorilyn/Mag Malate/Size of Time Released

Chemet?

>How about coconut butter? I don't think that is a trans fatty item. Andy?

>Although I can't imagine swallowing a bib blob of it would be too much

>fun..Val

>

>

>

>

[Guest guest]

Thanks for the response. I sat here reading your posting laughing so hard

because it sounded like me! I closed the windows yesterday so the neighbors

wouldn't think I required a visit from child protection services! I will

keep trying..sooner or later, I think he'll get it. Thanks, Val

[Guest guest]

In a message dated 07/29/2000 5:40:13 PM Eastern Daylight Time,

persistentC@... writes:

<<

What DOES seem to work is giving Kenny a tiny bit of ice cream (which he is

NEVER allowed to have otherwise) with the capsule, followed by another tiny

ice

cream " chaser " . I'm hoping we'll be able to fade this out eventually, but

in my

mind, getting the stuff into him is more important than a small infringement

of

the GFCF diet. >>

Have you ever tried some baby fruits? I used to keep a jar in the frig. for

just for this purpose. Carole

[Guest guest]

<< I was practically in tears, and worried that the neighbors would report us

as abusers, the way my son screamed. We chased him down, one parent held

him, the other parent pried open his mouth and placed the pill --which had

been dipped in margarine or butter or something-- by hand, as far back on

his tongue as possible, held his mouth shut, and kept saying " swallow!

swallow! " . Eventually he did. >>

I look at it like this, we have to do what we have to do :-) We did a drill

format with my son using small empty capsules at first. He can swallow horse

pills now :-)

Sometimes we have to put things in perspective. If you have ever had to give

yourself or your child an injection, it is really tough the first time

around. You have to do it so you do. It gets easier. Same with pills. Carole

[Guest guest]

>

> <<

> What DOES seem to work is giving Kenny a tiny bit of ice cream (which he is

> NEVER allowed to have otherwise) with the capsule, followed by another tiny

> ice

> cream " chaser " . I'm hoping we'll be able to fade this out eventually, but

> in my

> mind, getting the stuff into him is more important than a small infringement

> of

> the GFCF diet. >>

>

> Have you ever tried some baby fruits? I used to keep a jar in the frig. for

> just for this purpose. Carole

Carole,

Thanks, we DID try this on Dr. Amy's suggestion. Problem is, he just doesn't

like that stuff. He made a face when I just tried feeding it to him WITHOUT a

capsule!

(Cary, NC)

persistentC@...

>

>