Re: Please Help--Our DAN doc scaring us about chelating sooner than later

[Guest guest]

Kathy,

Since there is no substitute for a parent learning for themselves, please read

the files that are on the web list to find out why this protocol is not a good

idea, dangerous and designed to probably cause regression.

It's not as easy sometimes as just changing the protocol if it doesn't work

because when it doesn't work, it causes kids to become more autistic. If this

would happen to me then the feelings of the practitioner would not matter at

all.

[ ] Please Help--Our DAN doc scaring us about chelating

sooner than later

Hi. My son is 2.10 yo, PDD-NOS, and we started seeing a DAN doc a

couple of months ago. Thanks to info I learned on this board and

GFCFKids, we were already up to speed on most supplements that the

DAN doc required (A HUGE THANK YOU TO THOSE WHO GRACIOUSLY GIVE

THEIR TIME TO THESE BOARDS!!). She did some labs and started us on

a few more things--selenium, Actos, MB-12 nasal spray (which has

been a big wow), and DMG.

I'm getting really anxious to begin chelation. I believe the sooner

the better, as is recommended with pretty much all autism

interventions. Having read this board quite a lot (though I've not

been able to read as much lately as I'd prefer), I like the idea of

not doing a challenge (DAN doc agrees with that) and using frequent

low-dose administration of chelating agents. Because my son's

stools are still fairly mushy (even after 8 months of GFCF diet),

our DAN doc is giving us some grief about chelating him just yet.

She very grudgingly went ahead and prescribed TD-DMSA with a

protocol of 5 mg/kg (max of 250 mg/dose) three days on and 11 days

off. We'll get the DSMA in the mail on Tuesday. The doc said she'd

prefer we start a month from now after using TD-glutathione, TD-

GABA/mag, and a different probiotic in the interim. She warned us

that she's seen significant regression occur when people start

chelating too soon (which, as expected, concerns us (read: freaks us

out) considerably).

I would really appreciate some words of wisdom and experience here.

Should we be very concerned about a regression with the protocol she

recommended? How long should we wait to see if her suggested

protocol is working for our son? I'm so afraid of wasting precious

healing time, yet also concerned about causing more harm than good

to our son. (The doc's argument is that if we give him the chelator

but he isn't able to excrete the metals, it could do more harm than

good.) If we find her protocol isn't working, is there a way to

change the dosing of the TD to approximate Andy's protocol? Has

anyone done that successfully? The tweaks and additions the doc has

recommended so far (especially the MB-12) have been really good, so

I'm a little torn about questioning her protocol before we've even

tried it; I'm just wanting to do what's best for my son (as are we

all for our children, I'm sure).

Thanks for any advice/info/etc. you can provide,

Kathy in Florida

[Guest guest]

" kaidenjmom " <tiffanybrassard@...> wrote:

> Also, at the last DAN! conference (with test data) they proved that

> TD chelators aren't really doing anything anyway. That you are

> wasting time and money on them. The best bet is IV, suppositories,

> and oral (for those whose guts are cleaned up) to pull metals.

Can you please point me to this data?

I find this very interesting because after a few rounds of TD

chelation we saw gains. More interestingly, we saw huge gains while

actually using the chelators. Both my son's teacher and his ST

commented that they saw improvements, too, lest we think it is all our

parental wishful thinking that gains resulted. " Parent-dotal "

evidence at my house suggests TD chelators have some benefit, but I am

open to looking at other data.

diana

[Guest guest]

Are you dosing every 8 hours or every 4? 3 days on 11 off?

Thanks,

Kathy

> > Also, at the last DAN! conference (with test data) they proved

that

> > TD chelators aren't really doing anything anyway. That you are

> > wasting time and money on them. The best bet is IV,

suppositories,

> > and oral (for those whose guts are cleaned up) to pull metals.

>

>

> Can you please point me to this data?

>

> I find this very interesting because after a few rounds of TD

> chelation we saw gains. More interestingly, we saw huge gains

while

> actually using the chelators. Both my son's teacher and his ST

> commented that they saw improvements, too, lest we think it is all

our

> parental wishful thinking that gains resulted. " Parent-dotal "

> evidence at my house suggests TD chelators have some benefit, but

I am

> open to looking at other data.

>

> diana

>

>

>

>

> =======================================================

>

[Guest guest]

Yea, imagination! DS was telling me all about his dreams this last round. He

told me he dreamt of a Halloween obstacle course and was detailing all the

various 'rooms'. It must have been a Haunted house/ obstacle course best I

could tell.

Our DAN! said that it couldn't be the actual DMSA working that quickly for us

to see gains while using the chelators. Said it might be the sulfer? Anyone

know?

Jess <jess5192000@...> wrote:

We're seeing huge gains with TD DMSA as well. We've just completed

round 8. Every round bumps DS up a huge step in alertness, engagement, lucidity,

imagination, etc.

anothersillyuserid <anothersillyuserid@...> wrote: " kaidenjmom " wrote:

> Also, at the last DAN! conference (with test data) they proved that

> TD chelators aren't really doing anything anyway. That you are

> wasting time and money on them. The best bet is IV, suppositories,

> and oral (for those whose guts are cleaned up) to pull metals.

Can you please point me to this data?

I find this very interesting because after a few rounds of TD

chelation we saw gains. More interestingly, we saw huge gains while

actually using the chelators. Both my son's teacher and his ST

commented that they saw improvements, too, lest we think it is all our

parental wishful thinking that gains resulted. " Parent-dotal "

evidence at my house suggests TD chelators have some benefit, but I am

open to looking at other data.

diana

=======================================================

[Guest guest]

Every 8. I'm just new to this list so learning about the controversy and am

considering all I'm learning. But we are definititely getting great results

with what we are doing and I love our DAN doc. He's very very thoughtful and

thorough and really listens, I feel like we are a real team.

katdan98 <katdan98@...> wrote: Are you dosing every 8 hours or every 4? 3

days on 11 off?

Thanks,

Kathy

> > Also, at the last DAN! conference (with test data) they proved

that

> > TD chelators aren't really doing anything anyway. That you are

> > wasting time and money on them. The best bet is IV,

suppositories,

> > and oral (for those whose guts are cleaned up) to pull metals.

>

>

> Can you please point me to this data?

>

> I find this very interesting because after a few rounds of TD

> chelation we saw gains. More interestingly, we saw huge gains

while

> actually using the chelators. Both my son's teacher and his ST

> commented that they saw improvements, too, lest we think it is all

our

> parental wishful thinking that gains resulted. " Parent-dotal "

> evidence at my house suggests TD chelators have some benefit, but

I am

> open to looking at other data.

>

> diana

>

>

>

>

> =======================================================

>

[Guest guest]

We have been using the TD DMSA also. Initially, we saw terrible

regression. After following advice on this board regarding yeast, we

started to see nice gains. Both the regression and the gains seem to

indicate that the transdermal is doing something.

Also, I am assuming that the doctors still using TD DMSA have gotten

positive feedback from urine tests as to how much metal was being

excreted. We will be getting our results back soon and will know one

way or the other.

[ ] Re: Please Help--Our DAN doc scaring us about

chelating sooner than later

" kaidenjmom " <tiffanybrassard@-...> wrote:

> Also, at the last DAN! conference (with test data) they proved that

> TD chelators aren't really doing anything anyway. That you are

> wasting time and money on them. The best bet is IV, suppositories,

> and oral (for those whose guts are cleaned up) to pull metals.

Can you please point me to this data?

I find this very interesting because after a few rounds of TD

chelation we saw gains. More interestingly, we saw huge gains while

actually using the chelators. Both my son's teacher and his ST

commented that they saw improvements, too, lest we think it is all our

parental wishful thinking that gains resulted. " Parent-dotal "

evidence at my house suggests TD chelators have some benefit, but I am

open to looking at other data.

diana

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[Guest guest]

Our experience was of serious regression with the Buttar TDDMPS and

lab tests showed very little metal dumping. However with the Cutler

protocol, even though it is a pain to get up in the night (I really

hate it!!) the pain is soooo worth the gain as every round brought

new improvements. We have stopped due to allergies and yeast but

will start again this weekend. For us there is no contest- low

frequent dosing gets our vote!

-- In , Jess <jess5192000@...>

wrote:

>

> Every 8. I'm just new to this list so learning about the

controversy and am considering all I'm learning. But we are

definititely getting great results with what we are doing and I love

our DAN doc. He's very very thoughtful and thorough and really

listens, I feel like we are a real team.

>

> katdan98 <katdan98@...> wrote: Are you dosing every 8 hours or

every 4? 3 days on 11 off?

>

> Thanks,

>

> Kathy

>

>

> > > Also, at the last DAN! conference (with test data) they proved

> that

> > > TD chelators aren't really doing anything anyway. That you are

> > > wasting time and money on them. The best bet is IV,

> suppositories,

> > > and oral (for those whose guts are cleaned up) to pull metals.

> >

> >

> > Can you please point me to this data?

> >

> > I find this very interesting because after a few rounds of TD

> > chelation we saw gains. More interestingly, we saw huge gains

> while

> > actually using the chelators. Both my son's teacher and his ST

> > commented that they saw improvements, too, lest we think it is

all

> our

> > parental wishful thinking that gains resulted. " Parent-dotal "

> > evidence at my house suggests TD chelators have some benefit,

but

> I am

> > open to looking at other data.

> >

> > diana

> >

> >

> >

> >

> > =======================================================

> >

[Guest guest]

>

> Sounds like your DAN! dr is very smart and knows what she is doing.

> If you chelate too soon, we know that metals are pulled through the

> gut, you could really mess up his gut

Or if you try to heal the gut when metals are causing the problem in

the first place you get nowhere and lose valuable time, which is what

happened with my son. Within 15 rounds of chelation he could tolerate

phenols again (for some he still nded No-Fenol)instead of turning into

a raving maniac after eating a few bites of apple.

> Also, at the last DAN! conference (with test data) they proved that

> TD chelators aren't really doing anything anyway. That you are

> wasting time and money on them.

So what about the many reports of kids who have improved on them?

>The best bet is IV, suppositories,

> and oral (for those whose guts are cleaned up) to pull metals.

Very high risk, very bad side effect profile for IVs. Doing

suppositories longterm starts up a whole other ball of wax. Or something.

Nell

[Guest guest]

> However with the Cutler

> protocol, even though it is a pain to get up in the night (I really

> hate it!!) the pain is soooo worth the gain as every round brought

> new improvements.

Well, yay to that! ABout the getting up. When I'm chelating only one

kid, and sometimes myself too, I have him sleep in the bed with me,

and my husband sleeps in my son's bed. I cannot tell you how much

better it is to wake up and reach for the stuff on the bedside table,

give the capsule, and roll back to sleep. Not getting out of bed makes

a gigantic difference, at least to me.

I was just thinking lately that even though I'd never have slept with

my son this long (he's 8 now), having a 2-night sleepover most weeks

has actually been a great thing for our relationship. I used to read

to him and he'd fall asleep curled up against me, and now we each read

our own books but snuggled up together. And yes, my husband is very

understanding. And he knows how much better it is when I get more

sleep.

Nell

[Guest guest]

-Hi Nell!

I think that is a great idea- we have always let the children into

bed if they can't sleep or are cold in their own beds. With us now

though we are ALL four of us needing to start chelation! Lead

poisoning- from renovating a 250 yr old cottage. All of us starting

to do it this Friday. I can never sleep properly anyway so I am used

to feeling lousy and hungover from sleep deprivation. Cannot be much

worse!

Sue

-- In , " lanellici " <lanellici@..>

wrote:

>

>

> > However with the Cutler

> > protocol, even though it is a pain to get up in the night (I

really

> > hate it!!) the pain is soooo worth the gain as every round

brought

> > new improvements.

>

> Well, yay to that! ABout the getting up. When I'm chelating only

one

> kid, and sometimes myself too, I have him sleep in the bed with me,

> and my husband sleeps in my son's bed. I cannot tell you how much

> better it is to wake up and reach for the stuff on the bedside

table,

> give the capsule, and roll back to sleep. Not getting out of bed

makes

> a gigantic difference, at least to me.

>

> I was just thinking lately that even though I'd never have slept

with

> my son this long (he's 8 now), having a 2-night sleepover most

weeks

> has actually been a great thing for our relationship. I used to

read

> to him and he'd fall asleep curled up against me, and now we each

read

> our own books but snuggled up together. And yes, my husband is very

> understanding. And he knows how much better it is when I get

more

> sleep.

>

> Nell

>

[Guest guest]

We have chelated with oral DMSA/ALA (currently ALA only) through

terrible gut issues. I don't think my son's gut issues would have

started resolving without chelation, FWIW. We have seen tremendous

progress (language/speech, gross motor, growth, etc.) to date

following the advice we have received from Andy and the great

listmembers here. Of course, we still have a ways to go.....

I have heard of so many parents who waited to chelate until gut

issues resolved, which of course they didn't. Metals cause gut

problems. Getting them out can help resolve those problems. I

ended up chelating as often as I could when the gut was bad. It

certainly wasn't every week, as I had hoped, but with lots of

effort, we did manage to average a round every two weeks for our

first year. Not so bad, I think, given what we started with.

Anne

> >

> > Hi. My son is 2.10 yo, PDD-NOS, and we started seeing a DAN doc

a

> > couple of months ago. Thanks to info I learned on this board

and

> > GFCFKids, we were already up to speed on most supplements that

the

> > DAN doc required (A HUGE THANK YOU TO THOSE WHO GRACIOUSLY GIVE

> > THEIR TIME TO THESE BOARDS!!). She did some labs and started us

> on

> > a few more things--selenium, Actos, MB-12 nasal spray (which has

> > been a big wow), and DMG.

> >

> > I'm getting really anxious to begin chelation. I believe the

> sooner

> > the better, as is recommended with pretty much all autism

> > interventions. Having read this board quite a lot (though I've

> not

> > been able to read as much lately as I'd prefer), I like the idea

> of

> > not doing a challenge (DAN doc agrees with that) and using

> frequent

> > low-dose administration of chelating agents. Because my son's

> > stools are still fairly mushy (even after 8 months of GFCF

diet),

> > our DAN doc is giving us some grief about chelating him just

yet.

> > She very grudgingly went ahead and prescribed TD-DMSA with a

> > protocol of 5 mg/kg (max of 250 mg/dose) three days on and 11

days

> > off. We'll get the DSMA in the mail on Tuesday. The doc said

> she'd

> > prefer we start a month from now after using TD-glutathione, TD-

> > GABA/mag, and a different probiotic in the interim. She warned

us

> > that she's seen significant regression occur when people start

> > chelating too soon (which, as expected, concerns us (read:

freaks

> us

> > out) considerably).

> >

> > I would really appreciate some words of wisdom and experience

> here.

> > Should we be very concerned about a regression with the protocol

> she

> > recommended? How long should we wait to see if her suggested

> > protocol is working for our son? I'm so afraid of wasting

> precious

> > healing time, yet also concerned about causing more harm than

good

> > to our son. (The doc's argument is that if we give him the

> chelator

> > but he isn't able to excrete the metals, it could do more harm

> than

> > good.) If we find her protocol isn't working, is there a way to

> > change the dosing of the TD to approximate Andy's protocol? Has

> > anyone done that successfully? The tweaks and additions the doc

> has

> > recommended so far (especially the MB-12) have been really good,

> so

> > I'm a little torn about questioning her protocol before we've

even

> > tried it; I'm just wanting to do what's best for my son (as are

we

> > all for our children, I'm sure).

> >

> > Thanks for any advice/info/etc. you can provide,

> >

> > Kathy in Florida

> >

>