Re: TRULY TRULY..have any of your kids had their autism ...

[Guest guest]

In a message dated 10/12/2009 17:17:34 GMT Standard Time,

iferstevens@... writes:

It almost seems like you are trying to block information as if you don't

trust these parents to read and make an informed decision. With all the

information on chelation and recovery, I doubt one anecdotal post will send a

parent to the bank to buy into this particular method.

>>I have in fact seen this happen time and time again, not on this list

but on others, the new and green are often seduced

FWIW

Mandi in UK

[Guest guest]

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

From: Mum231ASD@...

In a message dated 10/12/2009 17:17:34 GMT Standard Time,

iferstevens@... writes:

It almost seems like you are trying to block information as if you don't

trust these parents to read and make an informed decision. With all the

information on chelation and recovery, I doubt one anecdotal post will send a

parent to the bank to buy into this particular method.

>>I have in fact seen this happen time and time again, not on this list

but on others, the new and green are often seduced

====>Agreed, and why I get emails when people try the 8 hour Ala protocol,

because I'm vocal against it, where people tell me what a mess it made their

kid. For goodness sakes, don't experiment with your kid's brain. Just because

someone says on the internet their kid is fully chelated, doesn't mean they are.

You have only their word which may be distorted against what their reality

testing is. Do this safely.

FWIW

Mandi in UK

[Guest guest]

I've not been on the board for ages and haven't followed this thread, but would

like to add my experience regarding protocols. I've done a bit of experimenting

on myself. Once on purpose, most recently by accident.

I chelate myself on the AC protocol. I find it impossible to believe that I

would be nearly as toxic as most of our kids. I weigh 150 pounds. On our first

round back after a break for moving overseas, I accidentally took a 100 mg

capsule of DMSA for three doses in a row, instead of the 25 mg DMSA. (the

bottles look identical especially in the dark kitchen). I did this at 11:00 pm,

2:00 am, and 6:00 am. By the third dose I had an excruciating headache. The

kind that makes you want to weep. Only then did I get a clue and realize my

mistake. I might add that this would be about my 40th round of chelation too.

This dose is a lot less than is often recommended for our kids. I don't know

what the headache actually correlates to in terms of what is happening to my

body/brain, but I really cannot see it being a good sign of anything. My more

purposeful experiment of a relatively high dose of DMSA (50 mgs each dose over

the entire 5 day round) left me emotionally out of control and depressed,

although I am able to take 50 mgs of ALA without problem, and in fact feel

pretty good while taking it.

Anita

>

>

> In a message dated 10/12/2009 17:17:34 GMT Standard Time,

> iferstevens@... writes:

>

> It almost seems like you are trying to block information as if you don't

> trust these parents to read and make an informed decision. With all the

> information on chelation and recovery, I doubt one anecdotal post will send a

> parent to the bank to buy into this particular method.

>

>

>

> >>I have in fact seen this happen time and time again, not on this list

> but on others, the new and green are often seduced

>

> FWIW

>

> Mandi in UK

>

>

>

[Guest guest]

We are all so different. My 62lb son seems to tolerate 50 mgs DMSA just fine so

far. What is supported here is a guideline, which means some will be able to

tolerate less and some more.

I'm hoping that staying within the 3-4 hour dose frequency time is more

important than the fact I use closer to 1mg per lb of DMSA.

Your accidental 100mg doses sounds horrible. How long did it take for the

headaches to go away and did you stop the round or continue with the appropriate

dose? I once gave my son 2 DMSA instead of taking 1 for myself and I just went

back to the 1 DMSA the next dose. Not sure if that was a bad idea but it didn't

seem to bother him at all.

Do you always do 5 day rounds? If so, what drove that decision? I'm so tired

after 3 nights of waking that I'm glad to take the break!

Pam

> >

> >

> > In a message dated 10/12/2009 17:17:34 GMT Standard Time,

> > iferstevens@ writes:

> >

> > It almost seems like you are trying to block information as if you don't

> > trust these parents to read and make an informed decision. With all the

> > information on chelation and recovery, I doubt one anecdotal post will send

a

> > parent to the bank to buy into this particular method.

> >

> >

> >

> > >>I have in fact seen this happen time and time again, not on this list

> > but on others, the new and green are often seduced

> >

> > FWIW

> >

> > Mandi in UK

> >

> >

> >

[Guest guest]

Hi Pam :-)

I continued dosing myself at the 25 mgs and took some extra C with every

subsequent dose. About 12 hours later the headache was mild and 24 hours later

it was gone.

Actually, I now try to do 9 or 10 day rounds. Amazingly, what I find is that

the third night is the hardest, and after that it gets easier. So, doing a nine

day round is much easier than doing three of the three day rounds, plus less

redistribution as a bonus. Early on I realized that my son struggled a bit with

the three day rounds so I started 5 and 6 day rounds. Now he can easily

tolerate the three day rounds, but since I can do longer ones I do.

I agree completely about the doses being guidelines. I did want to share my

experience though because I often think about how nonverbal kids with fairly

high pain thresholds (although my son's pain threshold does seem normal now it

certainly wasn't when we started down this road) might seem to tolerate higher

doses but in fact things could actually be going wrong.

It's nice to " see " you again. I've been away too long.

Anita

>

> We are all so different. My 62lb son seems to tolerate 50 mgs DMSA just fine

so far. What is supported here is a guideline, which means some will be able to

tolerate less and some more.

>

> I'm hoping that staying within the 3-4 hour dose frequency time is more

important than the fact I use closer to 1mg per lb of DMSA.

>

> Your accidental 100mg doses sounds horrible. How long did it take for the

headaches to go away and did you stop the round or continue with the appropriate

dose? I once gave my son 2 DMSA instead of taking 1 for myself and I just went

back to the 1 DMSA the next dose. Not sure if that was a bad idea but it didn't

seem to bother him at all.

>

> Do you always do 5 day rounds? If so, what drove that decision? I'm so tired

after 3 nights of waking that I'm glad to take the break!

>

> Pam

>

[Guest guest]

so i can chelate as many days as i want? does this really speed up

the process? my child doesn't mind getting up through the night at

all, since she never seems to sleep anyway. :0(

On Dec 10, 2009, at 4:59 PM, mysuperteach wrote:

> Hi Pam :-)

>

> I continued dosing myself at the 25 mgs and took some extra C with

> every subsequent dose. About 12 hours later the headache was mild

> and 24 hours later it was gone.

>

> Actually, I now try to do 9 or 10 day rounds. Amazingly, what I

> find is that the third night is the hardest, and after that it gets

> easier. So, doing a nine day round is much easier than doing three

> of the three day rounds, plus less redistribution as a bonus. Early

> on I realized that my son struggled a bit with the three day rounds

> so I started 5 and 6 day rounds. Now he can easily tolerate the

> three day rounds, but since I can do longer ones I do.

>

> I agree completely about the doses being guidelines. I did want to

> share my experience though because I often think about how

> nonverbal kids with fairly high pain thresholds (although my son's

> pain threshold does seem normal now it certainly wasn't when we

> started down this road) might seem to tolerate higher doses but in

> fact things could actually be going wrong.

>

> It's nice to " see " you again. I've been away too long.

>

> Anita

>

>

> >

> > We are all so different. My 62lb son seems to tolerate 50 mgs

> DMSA just fine so far. What is supported here is a guideline, which

> means some will be able to tolerate less and some more.

> >

> > I'm hoping that staying within the 3-4 hour dose frequency time

> is more important than the fact I use closer to 1mg per lb of DMSA.

> >

> > Your accidental 100mg doses sounds horrible. How long did it take

> for the headaches to go away and did you stop the round or continue

> with the appropriate dose? I once gave my son 2 DMSA instead of

> taking 1 for myself and I just went back to the 1 DMSA the next

> dose. Not sure if that was a bad idea but it didn't seem to bother

> him at all.

> >

> > Do you always do 5 day rounds? If so, what drove that decision?

> I'm so tired after 3 nights of waking that I'm glad to take the break!

> >

> > Pam

> >

>

>

[Guest guest]

You can't chelate indefinitely. The longest would be two weeks, and you must

give the body a break from chelation of at least equal length of the round.

Some people cannot tolerate this much chelation though and need longer breaks

between rounds.

IMO, it does speed things up if it's doable. I say that as a person who believes

that my son will need the 300 or so rounds that is the top estimate for some

kids, so speeding up is a bit of a priority for me. When everything is going

smoothly, in one month I can chelate, for eg, from the 1 to 9, break from the 10

to the 20, and then chelate from the 20 to the 26. That gives my son the

equivalent of five rounds. The next month would be something like 3 to the 12,

and then again from the 23-30, which be the would equivalent of another 5

rounds. Of course, it's hard to have the equivalent of 5 ronds every month, but

if you chelated every weekend for the two months, you wouldn't be able to do as

much chelation, plus there will be a bit more redistribution. Also, when I was

doing shorter rounds, I found that there would often be disruptions. Running a

schedule like this, there tends to be less disruptions that prevent chelation.

This is one benefit of homeschooling my son.

On the sleep side: I have recently discovered that if my son doesn't get fairly

regular doses (around 5 a week) of his td MB12, he only sleeps from about 11:30

until 4:00 am. With the td mb12, things are much better. He also needs

melatonin to fall asleep.

Anita

>

>

[Guest guest]

Good to see you back, Anita. I sometimes think about lengthening the rounds but

I think I'd blow out my adrenals from lack of sleep. I do OK with broken sleep

(trained for years with a snoring spouse) but I sure appreciate it when the

rounds are over!

Pam

> >

> > We are all so different. My 62lb son seems to tolerate 50 mgs DMSA just

fine so far. What is supported here is a guideline, which means some will be

able to tolerate less and some more.

> >

> > I'm hoping that staying within the 3-4 hour dose frequency time is more

important than the fact I use closer to 1mg per lb of DMSA.

> >

> > Your accidental 100mg doses sounds horrible. How long did it take for the

headaches to go away and did you stop the round or continue with the appropriate

dose? I once gave my son 2 DMSA instead of taking 1 for myself and I just went

back to the 1 DMSA the next dose. Not sure if that was a bad idea but it didn't

seem to bother him at all.

> >

> > Do you always do 5 day rounds? If so, what drove that decision? I'm so

tired after 3 nights of waking that I'm glad to take the break!

> >

> > Pam

> >

>

[Guest guest]

I planned to chelate indefinitely.I have heard from parents who have been

chelating their kids for ten years or more.

If you have both methylation defects,as I do,you can't really stop chelating,can

you?

                                          

 

>

> You can't chelate indefinitely.  The longest would be two weeks, and you must

give the body a break from chelation of at least equal length of the round. 

Some people cannot tolerate this much chelation though and need longer breaks

between rounds.

[Guest guest]

, I have thought about that a lot. If my kid can't kick out the toxins

he's been exposed to up until now, is he going to be able to kick them once he's

recovered? I wondered if most people would need some sort of maintanence

chelation from time to time. This would be a good question for Andy.

> >

> > You can't chelate indefinitely.  The longest would be two weeks, and you

must give the body a break from chelation of at least equal length of the

round.  Some people cannot tolerate this much chelation though and need longer

breaks between rounds.

>

>

>

>

>

>

[Guest guest]

Sorry, I should have been more clear: I meant that a chelation round cannot be

indefinitely long. We were discussing 10 day rounds instead of the usual 2.8.

So, while someone might continue to chelate their whole life, they cannot be on

a lifelong chelation round. The breaks are very important.

Anita

> >

> > You can't chelate indefinitely.  The longest would be two weeks, and you

must give the body a break from chelation of at least equal length of the

round.  Some people cannot tolerate this much chelation though and need longer

breaks between rounds.

>

>

>

>

>

>