Re: Please Help--Our DAN doc scaring~anyone on TD dosing??

[Guest guest]

I will help with what I can. Time is precious with a two year old.

So many things can be helped at such a young age. WHen I first

posted on here about my 3.5 year old PDD and what to do...everyone

here said..chelate ASAP. Don't waste another minute.

As for his stools, dmsa is good for making constipation so I do not

see his current loose stools to be aggravated by that. Most doctors

including DAN's who see negative effects and regressions with

chelation are usually because they are using to wrong dosing, the

wrong chelator, or the wrong protocol. You can use the protocol here

along with your DAN. Using the DAN to get the script and for testing

is fine. You can adapt the dosing to your liking.

How does she know your son can't dump the metals? With the help of a

chelator he could. Our kids have trouble dumping metals on their own

naturally, that is why we are here. But a chelator will get metals

out.

I do not see a mention of yeast treatment. This is important during

chelation. Probiotics and an antiyeast agent like GSE or nystatin

etc are necessary. This may also help with the loose stools.

Is there any reason she is prescribing transdermal instead of oral

dmsa. Gut issues maybe? If you do not see progress with td you may

wish to try oral at a later date. The dosing for oral is more steady

and reliable. However, sometimes td is needed for kids with really

harsh gut problems. Is her dosing protocol every four hours?

It should be. Someone here can help with td dosing. We only use

oral here.

Why the glutathione? Why the GABA/MAG, Is he low? Or does she feel

he needs it for detox support? I really don't see why you couldn't

start that and after a week or so begin chelation. My son uses none

of these. All his supplements are on the list from Andy and do not

include glutathione. Check the archives on www.onibasu.com on

glutathione, but I think he mentioned somewhere that this supplement

was not necessary and questioned it's use. Please don't quote me on

that...I could be wrong. But mag will supplemented anyway if you

follow Andy's chelation supplements. Which I would recommend. It

helps my son tolerate rounds without side effects and make sure they

get the minerals they need. It is also helpful to search any posts

that Andy has put on this site..old/new or archived. I learned a lot

that way about what is good and what is not. He will tell you that

most DAN's do not know what they are doing with chelation. This is

not to say your doc isn't any good. But if you are questioning what

she is telling you...there is a reason. I have learned to follow my

gut when it comes to what's best for my kids. Not a doc. IF I had

listened to the doc, my son would still be PDD...likely worse by now

as his lead, aluminum, arsenic, antimony would have only gotten

higher and caused more damage.

Please remember that regression with chelation is almost always the

result of improper dosing/timing/protocol. Not following

supplementation to support vitamin/mineral needs...or yeast. When

the yeast is treated..the regression goes away. There will also be

steps forward and a step backward..this is a normal part of

chelation. Usually though, if my son regresses on a behavior..it is

because he has yeast overgrowth, or is due for another round.

We have not seen regressions using Andy's protocol. No one can say

what's best for your son. However, a trial of chelation is the only

way to know. And if he is metal toxic, removing the metals is

necessary to his health...

Others here...help on the td dosing?

On td-glutathione use, GABA/Mag use?

>

> 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]

Thanks, Jan (and ). My comments/concerns interspersed

below...

>

> I will help with what I can. Time is precious with a two year old.

> So many things can be helped at such a young age. WHen I first

> posted on here about my 3.5 year old PDD and what to do...everyone

> here said..chelate ASAP. Don't waste another minute.

Thanks for the reassurance...I definitely agree, hence I pushed our

DAN doc to prescribe DMSA before she really wanted to.

> As for his stools, dmsa is good for making constipation so I do

not

> see his current loose stools to be aggravated by that.

That sounds great!

Most doctors

> including DAN's who see negative effects and regressions with

> chelation are usually because they are using to wrong dosing, the

> wrong chelator, or the wrong protocol. You can use the protocol

here

> along with your DAN. Using the DAN to get the script and for

testing

> is fine. You can adapt the dosing to your liking.

The crux of it is...this DAN is pretty inflexible about doing a

different protocol. Not to raise people's ire, but when I mentioned

Andy's protocol at our first in-person visit, she practically had a

conniption (sp?). She actually said that she has " picked up the

pieces " of kids who have done Andy's protocol (sorry, Andy...please

don't shoot the messenger). Now that we're on the precipice of

chelating, it's coming to a head and I have to make a decision...and

I'm very scared. I'm getting " horror stories " from both camps and

I'm not sure who to trust. My instinct says to...well, that's the

problem...I don't KNOW what my instinct says to do. I'd love to

hear from people who've tried it both ways and see which way was

best for them. Then again, I know that all of our kids are so

different that maybe not one specific protocol is the best for every

kid? I just don't know what to think...

> How does she know your son can't dump the metals? With the help of

a

> chelator he could. Our kids have trouble dumping metals on their

own

> naturally, that is why we are here. But a chelator will get metals

> out.

I think her argument is that his gut is not in good shape and the

gut is key in excreting the metals. She said that using a chelator

with an unhealthy gut would free the metals but not allow them to be

excreted. I've read others who have said (I think Andy says this,

too) that the gut can't be healed without chelation, and that is the

argument I used with the doc to prescribe the DMSA sooner. I just

hate this feud or whatever it is that's going on. I've learned so

much from this board, and like I told my husband, it's telling that

we were already doing a whole lot of things " right " before even

going to the doc due to advice from this board and GFCFKids.

>

> I do not see a mention of yeast treatment. This is important

during

> chelation. Probiotics and an antiyeast agent like GSE or nystatin

> etc are necessary. This may also help with the loose stools.

We tried Nystatin (our reg pediatrician prescribed it), but it

wasn't really strong enough I think. The DAN doc prescribed

Diflucan, and at first it made our son really hyper, so we

thought, " Oh, good...yeast die-off. " Instead, he stayed hyper the

whole 14 day course of the med. He seemed better when we stopped it

actually. The doc said she was going to think about that, but she

hasn't followed back up with us on that with other ideas yet. We've

had my son on probiotics for the past six months or so, but still no

success with the mushy poops. The doc gave us another probiotic

that we're giving a try in hopes that it's better for him than the

one we were using before. (I can look in the freezer and check the

brand if that helps.)

>

> Is there any reason she is prescribing transdermal instead of oral

> dmsa. Gut issues maybe? If you do not see progress with td you may

> wish to try oral at a later date. The dosing for oral is more

steady

> and reliable. However, sometimes td is needed for kids with really

> harsh gut problems. Is her dosing protocol every four hours?

> It should be. Someone here can help with td dosing. We only use

> oral here.

She only prescribes TD. I got such a bad reaction from her the

first time I mentioned Andy's protocol that I've been a little

hesitant to bring it back up (and I'm not usually a reserved, mousy

type person--I'm just also not a chemist, MD, etc.). I did mention

to her that I'd read that at the most recent DAN conference, they

had a presenter who provided research saying that TD was not showing

as good of results as suppository and oral. She said that in all

the discussion of protocols at the conference, all everyone focused

on was the numbers, not the clinical presentation of the kids. She

said that she's known some very toxic individuals who get along

pretty well, and some mildly toxic ones who have major issues.

About her dosing (sorry, I forgot to include that...duh!), it's

every 8 hours...and our son is 35 lbs. I read somewhere that the TD

might have the benefit of a longer time of release into the skin,

hence the longer time frame between dosing. Don't have a clue if

that's true. I've read so much...including lots of Andy's posts,

his protocol, supplement info, etc. Again, it's just that I'm being

given two conflicting protocols, and I'd like something definitive

to help me decide to either go with or against the DAN doc before we

start.

> Why the glutathione? Why the GABA/MAG, Is he low? Or does she feel

> he needs it for detox support? I really don't see why you couldn't

> start that and after a week or so begin chelation.

Actually, that's exactly what I planned to do (you smart person,

you). I was going to do the glut and GABA for a week and then

start. She said the glutathione would help support him in prep for

chelation and the GABA/mag would help calm him. I don't know if

he's low on GABA. I don't remember seeing a reference to it in any

of the testing we've done (I'm ashamed to admit that I've not done

much research on GABA yet). I mentioned to her that I had read that

glutathione (esp TD) has been found to be unnecessary. (See? I'm

not so meek, but I also didn't want to totally tick her off in case

we tried it her way and it worked.) She said that she has seen very

good results from both the GABA and glut.

He will tell you that

> most DAN's do not know what they are doing with chelation. This is

> not to say your doc isn't any good. But if you are questioning

what

> she is telling you...there is a reason. I have learned to follow

my

> gut when it comes to what's best for my kids. Not a doc. IF I had

> listened to the doc, my son would still be PDD...likely worse by

now

> as his lead, aluminum, arsenic, antimony would have only gotten

> higher and caused more damage.

Why do you say that your child would still be PDD if you had

followed your doc's direction? What did your doc say and why did

you question it? Did you just have kind of an uneasy feeling like

I'm having?

>

> Please remember that regression with chelation is almost always

the

> result of improper dosing/timing/protocol. Not following

> supplementation to support vitamin/mineral needs...or yeast. When

> the yeast is treated..the regression goes away. There will also be

> steps forward and a step backward..this is a normal part of

> chelation. Usually though, if my son regresses on a behavior..it

is

> because he has yeast overgrowth, or is due for another round.

> We have not seen regressions using Andy's protocol. No one can say

> what's best for your son. However, a trial of chelation is the

only

> way to know. And if he is metal toxic, removing the metals is

> necessary to his health...

I definitely agree...I completely believe he needs chelation. We're

supplementing with all of the key things that Andy recommends. I'm

just on the fence about which protocol is best, and I definitely

don't want to see a regression. My heart would break.

> Others here...help on the td dosing?

> On td-glutathione use, GABA/Mag use?

>

I would really appreciate input on any of those items.

Thanks again for your reply, Jan. I truly don't mean to

offend/enflame/etc. I just want as much input as possible before

making this very important judgement call.

Thanks again!

Kathy

[Guest guest]

I think you summed it up with this sentence .

>I definitely don't want to see a regression. My heart would break.

Go with the math .. Half life of DMSA is 4 hours ...

8 hour dosing means picking up and dropping the " payload " over and over and

over instead of once at the end.

Seems pretty straight forward to me.

Also, consider that you might be dealing with the measles virus in the gut,

read up on the High Dose Vit-A protocol or Virastop.

Good Luck !

Neil

[Guest guest]

Kathy, my comments are interspersed...

> The crux of it is...this DAN is pretty inflexible about doing a

> different protocol. Not to raise people's ire, but when I

mentioned

> Andy's protocol at our first in-person visit, she practically had

a

> conniption (sp?). She actually said that she has " picked up the

> pieces " of kids who have done Andy's protocol (sorry,

Andy...please

> don't shoot the messenger).

Kathy, I have been reading this list almost daily for well over a

year. I have also spent a lot of time - hours and hours - combing

the archives. I have not found a lot of disaster stories of people

doing Andy's protocol that weren't eventually explained by something

else - not using the recommended supporting supplements, or not

realizing that 3 hour dosing means during the night too, or

chelating with amalgams in, etc. You know, some glaring error.

Actually, I have yet to find *one* horrible report of regression on

the AC protocol. It is certainly possible that those few people are

just not reporting the bad stories here - human nature being what it

is - but I think that generally this list welcomes all reports

because we have a huge stake in sorting out what is helpful and what

is dangerous for our children. I know that Moria, one of Autism

Mercury's moderators, repeatedly asked people to report any bad

experiences on Andy's protocol, as she did for all protocols and

chelation products. I have read a sizable number of alarming

chelation stories on DAN-style protocols. (I also hope that some of

the people that have tried both will chime in here - we've done 27

AC rounds, no regression whatsoever, big gains in gross motor

skills.) Maybe you could ask your doctor if she could see if those

parents who had these bad experiences on the AC protocol would talk

to you, especially if she sees that you are serious about

considering it. If she is evasive, or refuses, I would raise the

suspicion a notch.

No chelation is absolutely risk-free. However, it is hard for me to

see how a protocol that uses a fraction of the chelator of most

protocols, and is obsessively careful to avoid redistribution by

dosing on the half-life, can be riskier than what most DAN doctors

are doing now (espcially as they continue to move towards more

aggressive protocols like IV DMPS, IV EDTA, etc.) The complaint I

*have* heard about Andy's protocol amongst the DAN community is that

it is overly cautious. What does come to mind, though, is that your

doctor's vitriol might well be because of the imflammatory things

Andy has to say about DAN and doctors generally. There are a lot of

bad feelings there, unfortunately.

We've

> had my son on probiotics for the past six months or so, but still

no

> success with the mushy poops. The doc gave us another probiotic

> that we're giving a try in hopes that it's better for him than the

> one we were using before. (I can look in the freezer and check

the

> brand if that helps.)

Yes, do post that information, as well as how much/how often you

give them. I struggled with my son's mushy poops for a very long

time. It turns out that we needed to be giving WAY more probiotics

than we were. We are consistently getting regular, mostly formed

poops now on about 210 billion CFU's a day, or more. (2 Super Pro

Bio's and 2 Culturelle's). This is not the answer (or the only

answer) for every kid, but it sure has helped ours.

Sorry if you've posted this before, but do you also give enzymes?

What is your child's diet like?

Glutathione is one of those things that some kids do well with, and

some regress on. Apparently this often has a lot to do with their

plasma cysteine levels. TD forms can also be irritating, though

not nearly as risky as IV's, which Andy and Mark Schauss both warn

against.

take care, and don't feel like you're stirring the pot - these are

legitimate questions!

Rene

[Guest guest]

What exactly is " Andy's Protocol " ? Thanks!

> Andy's protocol at our first in-person visit, she practically had

a

> conniption (sp?).

Recent Activity

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[Guest guest]

That's a question I can answer. Click on the Files link that is

(most likely) found on the left side of the window in which you're

reading this post. Go to the file named Andy_dose_sched and follow

it through to Moria's site. She has an awesome collection of Andy's

posts/writings/etc. including his frequent low dose chelation

protocol.

Kathy in Florida

>

> What exactly is " Andy's Protocol " ? Thanks!

>

>

>

> > Andy's protocol at our first in-person visit, she practically

had

> a

> > conniption (sp?).

> Recent Activity

> a.. 17New Members

> b.. 2New Links

> Visit Your Group

>

[Guest guest]

Thanks for your post, Neil. You're right. The math does make

sense. I wish I had a better idea of how TD works in terms of

absorption and figuring out equivalent doses between TD and oral.

I appreciate your comment about the viral issues. I bought some

Virastop a while back but haven't used it yet. I think I'll look

into that again and maybe consider adding it in depending on how

chelation goes (and depending on what I find when I search the

archives for info on it).

Kathy

>

> I think you summed it up with this sentence .

>

>

> >I definitely don't want to see a regression. My heart would break.

>

> Go with the math .. Half life of DMSA is 4 hours ...

>

> 8 hour dosing means picking up and dropping the " payload " over and

over and

> over instead of once at the end.

>

>

>

> Seems pretty straight forward to me.

>

>

>

> Also, consider that you might be dealing with the measles virus in

the gut,

> read up on the High Dose Vit-A protocol or Virastop.

>

>

>

> Good Luck !

>

> Neil

>

>

>

>

[Guest guest]

Kathy,

Pam (noaholiviaian), a regular listmate here, uses or used TD-DMSA on

her son with Andy's dose timing. You may want to look up some of her

old posts (here's one of my favourites, the infamous " bra and panties "

one: http://onibasu.com/archives/am/155665.html ), or email her

directly about TD dosing.

Rene

>

I wish I had a better idea of how TD works in terms of

> absorption and figuring out equivalent doses between TD and oral.

[Guest guest]

Thanks for responding, Rene. Your post was very encouraging and I

appreciate it. I just had a few things to comment based on your

info/questions...

> Actually, I have yet to find *one* horrible report of regression

on

> the AC protocol.

Very good to know...thanks!

(I also hope that some of

> the people that have tried both will chime in here - we've done 27

> AC rounds, no regression whatsoever, big gains in gross motor

> skills.)

I would definitely like that as well...and congrats on your success

thus far!

Maybe you could ask your doctor if she could see if those

> parents who had these bad experiences on the AC protocol would

talk

> to you, especially if she sees that you are serious about

> considering it. If she is evasive, or refuses, I would raise the

> suspicion a notch.

My suspicions are actually already raised, and based on how she

acted when I even mentioned Andy's name, I suspect she would just

shut down my questioning as soon as I asked.

What does come to mind, though, is that your

> doctor's vitriol might well be because of the imflammatory things

> Andy has to say about DAN and doctors generally. There are a lot

of

> bad feelings there, unfortunately.

Yes, and that's a shame really, because there are some truly

brilliant minds that could probably be much more successful with the

support of each other rather than the mistrust and anger. It's

definitely coming from both directions, though, so I don't know how

or if that'll ever be resolved. (Though I will say that I think

some of the DAN practitioners are moving more toward Andy's

protocol, or at least the oral option.)

> We've

> > had my son on probiotics ... (I can look in the freezer and

check

> the

> > brand if that helps.)

>

> Yes, do post that information, as well as how much/how often you

> give them.

We were using Custom Probiotics, 400 billion per day. Still the

mush. The doc has switched us to HLC Mindlinx, and we're at 24

billion cells per day right now, though in the process of gradually

increasing until (hopefully) his stools look good (well, you know,

good as stools go).

> Sorry if you've posted this before, but do you also give enzymes?

I don't think I posted that info. Occasionally we use Kirkman's

Enzym-Complete DPP-IV (when we can get it down him), but mostly we

rely on HNI's chewables of AFP, Zyme Prime, and No-Fenol.

> > What is your child's diet like?

He's been GFCF for about 8 months. I'm not much for cooking,

though, so we rely a lot on pre-made items and a little on home

cooking. He's intolerant to rice(!), which has made it more

difficult by far, and he's sensitive to phenols. We do a pretty

good job at keeping him " clean " in terms of no gluten or casein, but

we do give him some soy and corn, and he gets quite a bit of

potatoes (too much, probably). He's picky, but not to an extreme

(thank goodness).

> Glutathione is one of those things that some kids do well with,

and

> some regress on. Apparently this often has a lot to do with their

> plasma cysteine levels.

Hmmm...this made me look through my file of " stuff " and I didn't see

lab reports with plasma cysteine level, though I'm too exhausted to

go through some other papers I need to check before ruling out that

we have that. I'll look again and try to read up on the correlation

you're mentioning tomororow.

> take care, and don't feel like you're stirring the pot - these are

> legitimate questions!

>

That was probably the nicest thing you could have said. Thanks!!

Kathy

[Guest guest]

Thanks again, Rene! I will definitely check with Pam about it.

That was a funny post in terms of the bra and panties comment, but I

gotta say, I'd be throwing my bra and panties at 'em too if I saw it

was helping my son.

Kathy

> >

> I wish I had a better idea of how TD works in terms of

> > absorption and figuring out equivalent doses between TD and oral.

>

[Guest guest]

Low, frequent dosing based on the half-life of the chelators with appropriate

supplementation on both " on " and " off " days. See FAQs of this list for the

details.

S S

<p>What exactly is " Andy's Protocol " ? Thanks! <br>

_______________________________________________

Join Excite! - http://www.excite.com

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[Guest guest]

And what chelator, dose, dosing schedule, etc does she advocate? Sadly, some

DAN! docs put down Andy's protocol because it gives info on how parents can

chelate on their own without a doc, they don't profit from that.

S S

<p>Kathy, my comments are interspersed.<wbr>..<br>

<br>

<br>

> The crux of it is...this DAN is pretty inflexible about doing a <br>

> different protocol. Not to raise people's ire, but when I <br>

mentioned <br>

> Andy's protocol at our first in-person visit, she practically had <br>

a <br>

> conniption (sp?). She actually said that she has " picked up the <br>

> pieces " of kids who have done Andy's protocol (sorry, <br>

Andy...please <br>

> don't shoot the messenger). <br>

<br>

Kathy, I have been reading this list almost daily for well over a <br>

year. I have also spent a lot of time - hours and hours - combing <br>

the archives. I have not found a lot of disaster stories of people <br>

doing Andy's protocol that weren't eventually explained by something <br>

else - not using the recommended supporting supplements, or not <br>

realizing that 3 hour dosing means during the night too, or <br>

chelating with amalgams in, etc. You know, some glaring error. <br>

Actually, I have yet to find *one* horrible report of regression on <br>

the AC protocol. It is certainly possible that those few people are <br>

just not reporting the bad stories here - human nature being what it <br>

is - but I think that generally this list welcomes all reports <br>

because we have a huge stake in sorting out what is helpful and what <br>

is dangerous for our children. I know that Moria, one of Autism <br>

Mercury's moderators, repeatedly asked people to report any bad <br>

experiences on Andy's protocol, as she did for all protocols and <br>

chelation products. I have read a sizable number of alarming <br>

chelation stories on DAN-style protocols. (I also hope that some of <br>

the people that have tried both will chime in here - we've done 27 <br>

AC rounds, no regression whatsoever, big gains in gross motor <br>

skills.) Maybe you could ask your doctor if she could see if those <br>

parents who had these bad experiences on the AC protocol would talk <br>

to you, especially if she sees that you are serious about <br>

considering it. If she is evasive, or refuses, I would raise the <br>

suspicion a notch.<br>

<br>

No chelation is absolutely risk-free. However, it is hard for me to <br>

see how a protocol that uses a fraction of the chelator of most <br>

protocols, and is obsessively careful to avoid redistribution by <br>

dosing on the half-life, can be riskier than what most DAN doctors <br>

are doing now (espcially as they continue to move towards more <br>

aggressive protocols like IV DMPS, IV EDTA, etc.) The complaint I <br>

*have* heard about Andy's protocol amongst the DAN community is that <br>

it is overly cautious. What does come to mind, though, is that your <br>

doctor's vitriol might well be because of the imflammatory things <br>

Andy has to say about DAN and doctors generally. There are a lot of <br>

bad feelings there, unfortunately.<br>

<br>

We've <br>

> had my son on probiotics for the past six months or so, but still <br>

no <br>

> success with the mushy poops. The doc gave us another probiotic <br>

> that we're giving a try in hopes that it's better for him than the <br>

> one we were using before. (I can look in the freezer and check <br>

the <br>

> brand if that helps.)<br>

<br>

Yes, do post that information, as well as how much/how often you <br>

give them. I struggled with my son's mushy poops for a very long <br>

time. It turns out that we needed to be giving WAY more probiotics <br>

than we were. We are consistently getting regular, mostly formed <br>

poops now on about 210 billion CFU's a day, or more. (2 Super Pro <br>

Bio's and 2 Culturelle's)<wbr>. This is not the answer (or the only <br>

answer) for every kid, but it sure has helped ours.<br>

<br>

Sorry if you've posted this before, but do you also give enzymes? <br>

What is your child's diet like?<br>

<br>

Glutathione is one of those things that some kids do well with, and <br>

some regress on. Apparently this often has a lot to do with their <br>

plasma cysteine levels. TD forms can also be irritating, though <br>

not nearly as risky as IV's, which Andy and Mark Schauss both warn <br>

against. <br>

<br>

take care, and don't feel like you're stirring the pot - these are <br>

legitimate questions!<br>

<br>

Rene<br>

_______________________________________________

Join Excite! - http://www.excite.com

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[Guest guest]

She only prescribes TD.

If you use a prescription-only chelator (or anything else) you have to keep

going back to the prescriber for office visits and they get paid either by you

or by your insurance company. If you use OTC chelators they have no guarantee

you'll come back....

Not saying that's her motivation, but may play a role.

S S

_______________________________________________

Join Excite! - http://www.excite.com

The most personalized portal on the Web!

[Guest guest]

Kathy, I'm in the exact same situation, also with a young child with

gut issues and doc doesn't want us to chelate yet. From the

terminology you use, products you mentioned, and issues you brought

up, I have the sneaking suspicion that we are seeing the same DAN doc.

And yes she reacted the same way when we mentioned Andy's protocol,

etc. If you'd like, feel free to email me off list. It sounds like

we are going to be fighting the same battles :-(

>

> Thanks, Jan (and ). My comments/concerns interspersed

> below...

>

[Guest guest]

Kathy,

I must say this doc sounds arrogant and condescending. Please pardon

me if I am wrong, I have never met her. But she is not open to

listening to your suggestions..after all it is YOUR child, not hers.

It seems as though she is not open to the idea of a parent knowing

anything. Personally, I would take my money elsewhere for a second

opinion. I beleive that WE pay doctors for their services, if they

are not serving us as we wish, then we should find one who will.

The fact that she is inflexible on so many things is not a good

thing. This means she is bent on " her way or no way " . NOt being open

to other ideas will rob your child of potentially benefical

treatments.

IF she has picked up the peices of kids chelated on Andy's

protocol..I would question if that protocol was actually followed to

the T. We have had people on here that claimed to be following it,

but were having problems. When we had them post the symptoms and

dosing, it turns out they were not following it at all.

IT is hard knowing who to trust. Trust yourself. Not someone on your

payroll. Doctors do not know everything. Actually a DAN doc is a DAN

because they have taken some seminars. Not because they have had

additional intensive training.

Metal poisoning will continue to cause gut problems. Most here have

seen improvements in gut function with the chelation..not the other

way around. If the metals destroyed the gut in the first place, it

is not likely to see gut repair with metals still in the body. I do

however, agree that he should be on a constant yeast protocol. My

son takes stuff for yeast everyday, whether on a round or not. As do

I and my daughter. Anyone with body metals has a chronic candida

problem. Even without chelation, your son's body is trying to dump

some metals daily...so he is pulling metals through his gut now.

You might try natural yeast killers and altering his diet over the

difulcan which made him hyper. I am not sure 14 days was long

enough. We have been using GSE daily since May and we still see

yeast. There are also digestive enzymes to help with gut.

>

Td can work but the absorption is not the same as oral. The dose he

gets may be iffy and will be less than what is applied. So that is

why it works ok for some, and not for others. Search Andy's post on

www.onibasu.com on TD-dmsa.

And I think I already commented that 8 hour protocol is not a good

one. Go with four..you can do that yourself with or without her. Td

does not have longer time release that I know of.

>

Glutathione..do some more research on this and make sure he really

needs it and you are not being taken for an additional expense. The

GABA/Mag won't hurt any. My son takes GABA in his multi and he gets

mag as part of his supplements. GABA might calm him, who knows. For

us the hyperness went down with a few rounds of dmsa. Bit Mag is

calming and necessary. Have you tried an epsom salt bath for him?

This is very calming for our son and gets him extra mag.

>>

> >

> In regards to your question of why my son would still be PDD...his

hair test screamed metal poisoning, he was not developing according

to normal, I honestly do not feel he would have improved without

removing some metals. He had every sign,symptom of PDD, even the

pediatrician thoughts so. She sent us to some high fluten

developemental ped. But ya know what..I had already done three

months of chelation by the time we got in to see the specialist,

they spent 4 hours with my son...and said...NO SIGNS OF PDD.

My doctors directions even after seeing his hair test were to do

nothing. They checked his blood lead, and CBC and his zinc levels.

His CBC was normal, and his zinc was low (as the hair test said).

Low zinc is classic lead exposure. His blood lead was not high

enough to warrant chelation according to government criteria.

I researched the government criteria and how it's classified.

Basically any level causes problems but they do not have funding to

treat every child in the US, so they had to choose a line where it

become life threatening. SO only those kids get treated. I also

research what metals do to developing children. They do exactly what

happend to my son. My son showed remarkable improvements in just the

first round. He actually let me hold him! That is how I knew that

what we were doing was right. It was working, he was becomming

normal, he was happy for the first time every, he played, instead of

laying around or jumping all the time.

y son was 3.5 years old and could not use the toilet or dress

himself. After three rounds he got up one day and just peed in the

toilet. And continued to thereafter. After 11 rounds he pooped in

the toilet. The week of the first round, he got up one morning and

dressed himself. Funny for us, because he would not even wear

clothes before this.

But what really pushed me to do this was my gut feeling. That metals

were what was wrong with him. IT all fit, the hair test confirmed

it, the symptoms were there. The doc listened but mainly dismissed

the concerns. She has since seen him and seen how remarkably normal

he is...she asked us what we did. I just tell her we are removing

his metals naturally. End of story. But yes, the sick uneasy

feeling.... and please don't feel your offending anyone.

This is how we learn.

I also use this protocol to treat my 11 year old for mercury. She

has deranged mineral transport on hair testing. She was Hyperactive,

and mood disorder. Getting better also. I use Andy protocol on

myself too. I find it hard in today's enviornment and with

vaccinations to beleive there is anyone out there who does not have

metal exposure that could benefit from treatment. It is just that

with small kids it affects development. With adults it causes

disease. Hang in there. Do what you feel is best.

[Guest guest]

Kathy, have you considered trying SCD or BED? SCD escpecially is

supposed to be good for diarrhea. And there are some aspects of BED -

young coconut kefir, for example - that can be incorporated into

various diets. Have you done any IgG testing?

You've definitely got the probiotic angle covered. :-) Have you

considered VSL#3? It's another high potency probiotic that has helped

some with oxalate issues and diarrhea.

I've heard from a number of people that phenol issues were resolved

for their children fairly early into chelation, so that might be

something to look forward to.

Soy gave my boy diarrhea, FWIW.

Rene

>

> He's been GFCF for about 8 months. I'm not much for cooking,

> though, so we rely a lot on pre-made items and a little on home

> cooking. He's intolerant to rice(!), which has made it more

> difficult by far, and he's sensitive to phenols. We do a pretty

> good job at keeping him " clean " in terms of no gluten or casein, but

> we do give him some soy and corn, and he gets quite a bit of

> potatoes (too much, probably). He's picky, but not to an extreme

> (thank goodness).

[Guest guest]

Can I just say how good you are at positive reinforcement? Your

post gives me more information and confidence all at the sime time!

A few more comments below:

>

> IT is hard knowing who to trust. Trust yourself. Not someone on

your

> payroll.

With help from people like you, that's exactly what I'm starting to

do (thank you!). Matter of fact, I've decided that we're going to

start with the TD and just halve the dose, giving it every four

hours instead of eight. I wish I knew if that closely approximates

Andy's oral dosing protocol, but it's the best I can for now and I

feel pretty good about it. If we see no (or God forbid, bad)

results, we can change what we're doing at that point.

> Metal poisoning will continue to cause gut problems. Most here

have

> seen improvements in gut function with the chelation..not the

other

> way around.

That's what I tried to suggest to our DAN, and I'm really hoping

we'll see that result too. That would be so great!

I do

> however, agree that he should be on a constant yeast protocol.

We'll start doing this. I've never tried GSE, and I understand it

can be pretty potent stuff, but we'll give it a try.

Search Andy's post on

> www.onibasu.com on TD-dmsa.

I will do that. Thanks!

>

> And I think I already commented that 8 hour protocol is not a good

> one. Go with four..you can do that yourself with or without her.

Yep. As mentioned above, that's what we're gonna do. We'll

probably add in ALA after a few weeks...or do you think that should

be sooner?

Have you tried an epsom salt bath for him?

> This is very calming for our son and gets him extra mag.

Yes, we do this somewhat regularly. Our son LOVES it and it does

seem to calm him a bit.

> >>

But ya know what..I had already done three

> months of chelation by the time we got in to see the specialist,

> they spent 4 hours with my son...and said...NO SIGNS OF PDD.

That's terrific! Has anything set you back as you've gone along, or

has it pretty much been uphill all the way?

> Low zinc is classic lead exposure.

I think I'm almost as excited about getting the lead out (pun

intended) as getting the mercury out.

> y son was 3.5 years old and could not use the toilet or dress

> himself. After three rounds he got up one day and just peed in the

> toilet. And continued to thereafter. After 11 rounds he pooped in

> the toilet. The week of the first round, he got up one morning and

> dressed himself. Funny for us, because he would not even wear

> clothes before this.

Very inspiring. Thank you for sharing that.

Hang in there. Do what you feel is best.

>

Again, thank you for such an uplifting response!!

Kathy

[Guest guest]

Can I just add here that when we got rid of corn and soy we saw big

improvements for our son. I think I read somewhere that 73% ASD kids

have a problem with either one or both of them.

Sue

-- In , " katdan98 " <katdan98@...>

wrote:

>

> Thanks for responding, Rene. Your post was very encouraging and I

> appreciate it. I just had a few things to comment based on your

> info/questions...

>

>

>

> > Actually, I have yet to find *one* horrible report of regression

> on

> > the AC protocol.

>

> Very good to know...thanks!

>

> (I also hope that some of

> > the people that have tried both will chime in here - we've done

27

> > AC rounds, no regression whatsoever, big gains in gross motor

> > skills.)

>

> I would definitely like that as well...and congrats on your

success

> thus far!

>

> Maybe you could ask your doctor if she could see if those

> > parents who had these bad experiences on the AC protocol would

> talk

> > to you, especially if she sees that you are serious about

> > considering it. If she is evasive, or refuses, I would raise

the

> > suspicion a notch.

>

> My suspicions are actually already raised, and based on how she

> acted when I even mentioned Andy's name, I suspect she would just

> shut down my questioning as soon as I asked.

>

> What does come to mind, though, is that your

> > doctor's vitriol might well be because of the imflammatory

things

> > Andy has to say about DAN and doctors generally. There are a

lot

> of

> > bad feelings there, unfortunately.

>

> Yes, and that's a shame really, because there are some truly

> brilliant minds that could probably be much more successful with

the

> support of each other rather than the mistrust and anger. It's

> definitely coming from both directions, though, so I don't know

how

> or if that'll ever be resolved. (Though I will say that I think

> some of the DAN practitioners are moving more toward Andy's

> protocol, or at least the oral option.)

>

> > We've

> > > had my son on probiotics ... (I can look in the freezer and

> check

> > the

> > > brand if that helps.)

> >

> > Yes, do post that information, as well as how much/how often you

> > give them.

>

> We were using Custom Probiotics, 400 billion per day. Still the

> mush. The doc has switched us to HLC Mindlinx, and we're at 24

> billion cells per day right now, though in the process of

gradually

> increasing until (hopefully) his stools look good (well, you know,

> good as stools go).

>

> > Sorry if you've posted this before, but do you also give

enzymes?

>

> I don't think I posted that info. Occasionally we use Kirkman's

> Enzym-Complete DPP-IV (when we can get it down him), but mostly we

> rely on HNI's chewables of AFP, Zyme Prime, and No-Fenol.

>

> > > What is your child's diet like?

>

> He's been GFCF for about 8 months. I'm not much for cooking,

> though, so we rely a lot on pre-made items and a little on home

> cooking. He's intolerant to rice(!), which has made it more

> difficult by far, and he's sensitive to phenols. We do a pretty

> good job at keeping him " clean " in terms of no gluten or casein,

but

> we do give him some soy and corn, and he gets quite a bit of

> potatoes (too much, probably). He's picky, but not to an extreme

> (thank goodness).

>

>

> > Glutathione is one of those things that some kids do well with,

> and

> > some regress on. Apparently this often has a lot to do with

their

> > plasma cysteine levels.

>

> Hmmm...this made me look through my file of " stuff " and I didn't

see

> lab reports with plasma cysteine level, though I'm too exhausted

to

> go through some other papers I need to check before ruling out

that

> we have that. I'll look again and try to read up on the

correlation

> you're mentioning tomororow.

>

>

> > take care, and don't feel like you're stirring the pot - these

are

> > legitimate questions!

> >

> That was probably the nicest thing you could have said. Thanks!!

>

> Kathy

>

[Guest guest]

Hi again, Rene.

>

> Kathy, have you considered trying SCD or BED? SCD escpecially is

> supposed to be good for diarrhea. And there are some aspects of

BED -

> young coconut kefir, for example - that can be incorporated into

> various diets. Have you done any IgG testing?

Ughh...the IgG results... He's highly intolerant to several

things, the most difficult to deal with being rice, but also

including cashew, coconut (no kefir for us unfortunately), oat, and

peanut. He's moderately intolerant to pork and gluten/wheat (the

latter of which we've eliminated anyway being GFCF). There are

quite a few things he's mildly intolerant to, but I haven't checked

closely enough into SCD or BED to see if they would be possible with

his intolerances. When I face up to the truth, I know I've been

putting of that research because the thought of incorporating yet

more (or different) dietary restrictions drains me. I'm really

hoping (dreaming, praying, wishing, etc.) that chelation will help

with his intolerances. I would love to be able to go to, for

instance, a family reunion and let him pick (pretty much) whatever

he wanted from the smorgasbord(sp) of choices. Ahhh....what a life

that would be.

>

> You've definitely got the probiotic angle covered. :-) Have you

> considered VSL#3? It's another high potency probiotic that has

helped

> some with oxalate issues and diarrhea.

That's another thing I've heard about but haven't researched (the

VSL#3). I've definitely heard that it's good stuff. Does it

require a prescription? Might end up Dan doc-less (hence, lacking

prescriptions) if she finds out about my inquiries here and " fires "

us.

>

> I've heard from a number of people that phenol issues were

resolved

> for their children fairly early into chelation, so that might be

> something to look forward to.

Woo hoo...that would rock!

Thanks again for your very helpful posts, Rene. I have to say that

one thing that makes me even more inclined to follow Andy's protocol

(at least as closely as possible for now and maybe completely in the

future) is the support and compassion and wonderful information that

posters like you (and many others who've been great) are willing to

provide.

Kathy

[Guest guest]

Great post Rene.

> What does come to mind, though, is that your

> doctor's vitriol might well be because of the imflammatory things

> Andy has to say about DAN and doctors generally. There are a lot of

> bad feelings there, unfortunately.

I think so too. I wonder whether the resistance of DAN initially was

that they didn't want to be in the position of telling parents they

HAD to do nighttime doses -- they didn't want to be bad guys

delivering such inconvenient news, and/or they thought too many

parents would decide they couldn't handle it and not chelate at all.

And then, once they made that leap, they have to not see the bad

reports...

Nell

[Guest guest]

>From the

> terminology you use, products you mentioned, and issues you brought

> up, I have the sneaking suspicion that we are seeing the same DAN doc.

> And yes she reacted the same way when we mentioned Andy's protocol,

> etc.

OK now I'm all curious.

Nell

[Guest guest]

Hi, Kathy, again :-)

comments below...

but I haven't checked

> closely enough into SCD or BED to see if they would be possible

with

> his intolerances. When I face up to the truth, I know I've been

> putting of that research because the thought of incorporating yet

> more (or different) dietary restrictions drains me. >

Oh, baby I hear you! We had to leave GFCF after 10 months because

our son went on a hunger strike - GFCF helped a lot with behaviour,

etc, especially at first, but the gut issues mostly continued.

Enzymes have kept us rolling nicely, but I always wonder if we need

to revisit diet. (We still avoid artificials, hydrogenated fats,

soy, limit some of the IgG foods, and try to ue organic food as much

as possible. Dream of someday using a Weston A. Price approach to

everything... sigh.) Until our son is less of a self-limiter, it's

really hard to consider another restrictive diet. I know, champions

of the various diets always say that self-limiting is an indication

that they NEED the restrictions, and it could well be so. It's just

very hard for me to think about him not eating anything again.

> That's another thing I've heard about but haven't researched (the

> VSL#3). I've definitely heard that it's good stuff. Does it

> require a prescription?

nope, look here: http://www.vsl3.com/VSL3/default.asp

> Thanks again for your very helpful posts, Rene. I have to say

that

> one thing that makes me even more inclined to follow Andy's

protocol

> (at least as closely as possible for now and maybe completely in

the

> future) is the support and compassion and wonderful information

that

> posters like you (and many others who've been great) are willing

to

> provide.

>

Well, thank you! I'm all a-tingle! :-)

Rene

[Guest guest]

I also posted some more archives on a recent td vs. oral dmsa post.

Here is a post I found from Andy on glutathione use:

http://onibasu.com/archives/am/122629.html

> >

> > IT is hard knowing who to trust. Trust yourself. Not someone on

> your

> > payroll.

>

> With help from people like you, that's exactly what I'm starting

to

> do (thank you!). Matter of fact, I've decided that we're going to

> start with the TD and just halve the dose, giving it every four

> hours instead of eight. I wish I knew if that closely

approximates

> Andy's oral dosing protocol, but it's the best I can for now and I

> feel pretty good about it. If we see no (or God forbid, bad)

> results, we can change what we're doing at that point.

>

> > Metal poisoning will continue to cause gut problems. Most here

> have

> > seen improvements in gut function with the chelation..not the

> other

> > way around.

>

> That's what I tried to suggest to our DAN, and I'm really hoping

> we'll see that result too. That would be so great!

>

> I do

> > however, agree that he should be on a constant yeast protocol.

>

> We'll start doing this. I've never tried GSE, and I understand it

> can be pretty potent stuff, but we'll give it a try.

>

> Search Andy's post on

> > www.onibasu.com on TD-dmsa.

>

> I will do that. Thanks!

>

> >

> > And I think I already commented that 8 hour protocol is not a

good

> > one. Go with four..you can do that yourself with or without her.

>

> Yep. As mentioned above, that's what we're gonna do. We'll

> probably add in ALA after a few weeks...or do you think that

should

> be sooner?

>

> Have you tried an epsom salt bath for him?

> > This is very calming for our son and gets him extra mag.

>

> Yes, we do this somewhat regularly. Our son LOVES it and it does

> seem to calm him a bit.

>

> > >>

> But ya know what..I had already done three

> > months of chelation by the time we got in to see the specialist,

> > they spent 4 hours with my son...and said...NO SIGNS OF PDD.

>

> That's terrific! Has anything set you back as you've gone along,

or

> has it pretty much been uphill all the way?

>

> > Low zinc is classic lead exposure.

>

> I think I'm almost as excited about getting the lead out (pun

> intended) as getting the mercury out.

>

> > y son was 3.5 years old and could not use the toilet or dress

> > himself. After three rounds he got up one day and just peed in

the

> > toilet. And continued to thereafter. After 11 rounds he pooped

in

> > the toilet. The week of the first round, he got up one morning

and

> > dressed himself. Funny for us, because he would not even wear

> > clothes before this.

>

> Very inspiring. Thank you for sharing that.

>

> Hang in there. Do what you feel is best.

> >

> Again, thank you for such an uplifting response!!

>

> Kathy

>

[Guest guest]

Jan,

Thank you for your wisdom. I am newly starting down the path of

chelation for my 3.5 year old son. I was looking for the words to

say to my DAN doctor....I have them now!

" Metals destroyed the gut in the first place. It is not likely to

see gut repair with metals still in the body "

So simple but yet I couldn't say it because I am so tired and

emotional. Ugh...

Thank you!!

>

> Kathy,

> I must say this doc sounds arrogant and condescending. Please

pardon

> me if I am wrong, I have never met her. But she is not open to

> listening to your suggestions..after all it is YOUR child, not

hers.

> It seems as though she is not open to the idea of a parent knowing

> anything. Personally, I would take my money elsewhere for a second

> opinion. I beleive that WE pay doctors for their services, if they

> are not serving us as we wish, then we should find one who will.

>

> The fact that she is inflexible on so many things is not a good

> thing. This means she is bent on " her way or no way " . NOt being

open

> to other ideas will rob your child of potentially benefical

> treatments.

>

> IF she has picked up the peices of kids chelated on Andy's

> protocol..I would question if that protocol was actually followed

to

> the T. We have had people on here that claimed to be following it,

> but were having problems. When we had them post the symptoms and

> dosing, it turns out they were not following it at all.

>

>

> IT is hard knowing who to trust. Trust yourself. Not someone on

your

> payroll. Doctors do not know everything. Actually a DAN doc is a

DAN

> because they have taken some seminars. Not because they have had

> additional intensive training.

>

> Metal poisoning will continue to cause gut problems. Most here

have

> seen improvements in gut function with the chelation..not the

other

> way around. If the metals destroyed the gut in the first place, it

> is not likely to see gut repair with metals still in the body. I

do

> however, agree that he should be on a constant yeast protocol. My

> son takes stuff for yeast everyday, whether on a round or not. As

do

> I and my daughter. Anyone with body metals has a chronic candida

> problem. Even without chelation, your son's body is trying to dump

> some metals daily...so he is pulling metals through his gut now.

> You might try natural yeast killers and altering his diet over the

> difulcan which made him hyper. I am not sure 14 days was long

> enough. We have been using GSE daily since May and we still see

> yeast. There are also digestive enzymes to help with gut.

> >

> Td can work but the absorption is not the same as oral. The dose

he

> gets may be iffy and will be less than what is applied. So that is

> why it works ok for some, and not for others. Search Andy's post

on

> www.onibasu.com on TD-dmsa.

>

> And I think I already commented that 8 hour protocol is not a good

> one. Go with four..you can do that yourself with or without her.

Td

> does not have longer time release that I know of.

> >

> Glutathione..do some more research on this and make sure he really

> needs it and you are not being taken for an additional expense.

The

> GABA/Mag won't hurt any. My son takes GABA in his multi and he

gets

> mag as part of his supplements. GABA might calm him, who knows.

For

> us the hyperness went down with a few rounds of dmsa. Bit Mag is

> calming and necessary. Have you tried an epsom salt bath for him?

> This is very calming for our son and gets him extra mag.

> >>

> > >

> > In regards to your question of why my son would still be

PDD...his

> hair test screamed metal poisoning, he was not developing

according

> to normal, I honestly do not feel he would have improved without

> removing some metals. He had every sign,symptom of PDD, even the

> pediatrician thoughts so. She sent us to some high fluten

> developemental ped. But ya know what..I had already done three

> months of chelation by the time we got in to see the specialist,

> they spent 4 hours with my son...and said...NO SIGNS OF PDD.

> My doctors directions even after seeing his hair test were to do

> nothing. They checked his blood lead, and CBC and his zinc levels.

> His CBC was normal, and his zinc was low (as the hair test said).

> Low zinc is classic lead exposure. His blood lead was not high

> enough to warrant chelation according to government criteria.

> I researched the government criteria and how it's classified.

> Basically any level causes problems but they do not have funding

to

> treat every child in the US, so they had to choose a line where it

> become life threatening. SO only those kids get treated. I also

> research what metals do to developing children. They do exactly

what

> happend to my son. My son showed remarkable improvements in just

the

> first round. He actually let me hold him! That is how I knew that

> what we were doing was right. It was working, he was becomming

> normal, he was happy for the first time every, he played, instead

of

> laying around or jumping all the time.

> y son was 3.5 years old and could not use the toilet or dress

> himself. After three rounds he got up one day and just peed in the

> toilet. And continued to thereafter. After 11 rounds he pooped in

> the toilet. The week of the first round, he got up one morning and

> dressed himself. Funny for us, because he would not even wear

> clothes before this.

>

> But what really pushed me to do this was my gut feeling. That

metals

> were what was wrong with him. IT all fit, the hair test confirmed

> it, the symptoms were there. The doc listened but mainly dismissed

> the concerns. She has since seen him and seen how remarkably

normal

> he is...she asked us what we did. I just tell her we are removing

> his metals naturally. End of story. But yes, the sick uneasy

> feeling.... and please don't feel your offending anyone.

> This is how we learn.

> I also use this protocol to treat my 11 year old for mercury. She

> has deranged mineral transport on hair testing. She was

Hyperactive,

> and mood disorder. Getting better also. I use Andy protocol on

> myself too. I find it hard in today's enviornment and with

> vaccinations to beleive there is anyone out there who does not

have

> metal exposure that could benefit from treatment. It is just that

> with small kids it affects development. With adults it causes

> disease. Hang in there. Do what you feel is best.

>