Re: afraid to continue chelation (long)

[Guest guest]

Is the child's diet restricted to GFCF?

We eliminated all sugars, milk, and bread.

We added Nystatin, 3 pills per day.

These interventions were very helpful.

We saw results immediately.

Only water to drink, except 4 oz.s no-sugar-

added pear juice in the a.m.

His energy seems abnormally high. Food

is the source of energy. I suggest modifying

the food sources!

Also, I suggest having an upper and lower GI

scope. Sounds like he may have real gut

problems that are subject to diagnosis and

treatment.

We did not get normal poops (he is 8 1/2) until

scoped, ulcer diagnosed, ulcer treated with

Pentasa.

I am sure that there are interventions that

will work for your child. Keep trying.

--- <pegapud@...> wrote:

> Hi folks, looking for some advice. We did two

> Cutler protocol rounds

> of DMSA a few weeks ago on my son with very bad

> results. He is 28.5

> lbs, very high porphyrins, meets counting rules. We

> used 6.25 mg per

> dose. He reacted horribly, with zero positives and

> TONS of negatives

> which continued while off the rounds. Severe yeast

> despite Diflucan

> plus GSE, a combo that has always worked in the

> past. Stopped

> sleeping, started violent head banging all night

> long. All of his

> stimmy and OCD behaviors worsened, and his gut

> totally fell apart. He

> is a " gut kid " but we finally had it under control

> before starting

> chelation and were getting fairly good poops for

> weeks. But on DMSA

> he instantly imploded. Severe yeast and bacteria

> and constant

> diarrhea again, often a lovely shade of yellow. One

> month after his

> first round we now just barely have a handle on the

> yeast again, and

> the bacteria is back big time so we're having to go

> back on

> antibiotics which we'd managed to avoid these last 3

> months. He

> continues to wake up multiple times during the night

> and during his

> nap, and the head banging has continued too, seems

> like he won't

> " unlearn " it. We had to move him to a playpen.

>

> I'm pretty devastated and quite honestly scared of

> doing another

> round. But he is so severely autistic and so

> obviously toxic! We

> have tried so many biomed interventions these last 6

> months, even the

> crazily expensive HBOT, but he is a non-responder.

> We just got a

> bottle of Neutrophil Plus so I'm going to start that

> as soon as we

> finish this round of antibiotics. But even if he

> tolerates that --

> always iffy since he is highly allergic or

> intolerant to many foods

> and supps -- I'm still distrustful now. I'm

> thinking gee, last time

> he learned how to nearly give himself concussions

> all night long, what

> will he learn this time?!! He is breastfed and I

> have 4 amalgams so

> we can't risk trying ALA, and we're chelating

> without a doc (our doc

> is *massively* against this protocol and I think

> would try to kill

> us!!), so DMSA is our only option right now. Do we

> just wait and try

> again when he's older and maybe his gut is a little

> better? Do we

> wait until doc thinks he's ready and try the TD-DMSA

> the doc prefers?

> I know there may not be any answers here, but I'm

> at a loss and

> really need some input. Or maybe just a few

> shoulders to cry on, I dunno!

>

> Sorry so long,

>

>

>

>

__________________________________________________

[Guest guest]

I am so sorry, .

You say your son is breastfed... are both you and your child GFCF? I

assume he eats solids since you list his weight as 28.5 lbs (is he 2

yet?). Soy-free, too.

I would also not restart chelation until you get things under much,

much better control. Personally, I would consider ending the

breastfeeding due to the chronic mercury exposure from your

amalgams. That is a VERY personal choice, I know. I don't even

know how much mercury is excreted in breast milk, but I assume it is

not mercury-free.

ALA can be as horrendous of a yeast-creator as DMSA. I would hold

off on that, too, even if you do stop breastfeeding.

Have you checked out www.danasview.net for antibacterial/yeast

fighting info? Dana has a huge archive of information and personal

sucesses and failures.

I wish I could help you more.

Pam

>

> Hi folks, looking for some advice. We did two Cutler protocol

rounds

> of DMSA a few weeks ago on my son with very bad results. He is 28.5

> lbs, very high porphyrins, meets counting rules. We used 6.25 mg

per

> dose. He reacted horribly, with zero positives and TONS of

negatives

> which continued while off the rounds. Severe yeast despite Diflucan

> plus GSE, a combo that has always worked in the past. Stopped

> sleeping, started violent head banging all night long. All of his

> stimmy and OCD behaviors worsened, and his gut totally fell apart.

He

> is a " gut kid " but we finally had it under control before starting

> chelation and were getting fairly good poops for weeks. But on DMSA

> he instantly imploded. Severe yeast and bacteria and constant

> diarrhea again, often a lovely shade of yellow. One month after his

> first round we now just barely have a handle on the yeast again, and

> the bacteria is back big time so we're having to go back on

> antibiotics which we'd managed to avoid these last 3 months. He

> continues to wake up multiple times during the night and during his

> nap, and the head banging has continued too, seems like he won't

> " unlearn " it. We had to move him to a playpen.

>

> I'm pretty devastated and quite honestly scared of doing another

> round. But he is so severely autistic and so obviously toxic! We

> have tried so many biomed interventions these last 6 months, even

the

> crazily expensive HBOT, but he is a non-responder. We just got a

> bottle of Neutrophil Plus so I'm going to start that as soon as we

> finish this round of antibiotics. But even if he tolerates that --

> always iffy since he is highly allergic or intolerant to many foods

> and supps -- I'm still distrustful now. I'm thinking gee, last time

> he learned how to nearly give himself concussions all night long,

what

> will he learn this time?!! He is breastfed and I have 4 amalgams so

> we can't risk trying ALA, and we're chelating without a doc (our doc

> is *massively* against this protocol and I think would try to kill

> us!!), so DMSA is our only option right now. Do we just wait and

try

> again when he's older and maybe his gut is a little better? Do we

> wait until doc thinks he's ready and try the TD-DMSA the doc

prefers?

> I know there may not be any answers here, but I'm at a loss and

> really need some input. Or maybe just a few shoulders to cry on, I

dunno!

>

> Sorry so long,

>

>

[Guest guest]

He is actually way beyond GFCF! He is SCD minus IgG sensitivities, so

there are basically about 10 foods that he can tolerate and will also

eat (he's very picky and has massive sensory issues). They are all

fairly low oxalate foods as well. I rotate them as much as possible

to hopefully prevent any new allergies. He drinks only water and

breastmilk.

I suppose scoping may be the way to go at some point. But as I

mentioned below his gut was actually showing major improvements before

we started DMSA.

thanks,

>

> Is the child's diet restricted to GFCF?

> We eliminated all sugars, milk, and bread.

> We added Nystatin, 3 pills per day.

> These interventions were very helpful.

> We saw results immediately.

>

> Only water to drink, except 4 oz.s no-sugar-

> added pear juice in the a.m.

>

> His energy seems abnormally high. Food

> is the source of energy. I suggest modifying

> the food sources!

>

> Also, I suggest having an upper and lower GI

> scope. Sounds like he may have real gut

> problems that are subject to diagnosis and

> treatment.

>

> We did not get normal poops (he is 8 1/2) until

> scoped, ulcer diagnosed, ulcer treated with

> Pentasa.

>

> I am sure that there are interventions that

> will work for your child. Keep trying.

>

>

>

[Guest guest]

>

> I am so sorry, .

>

> You say your son is breastfed... are both you and your child GFCF? I

> assume he eats solids since you list his weight as 28.5 lbs (is he 2

> yet?). Soy-free, too.

Yes we are both SCD. When I originally went GFCF, I saw a reaction in

him within half a day, so I know it had a big effect. I occasionally

have slip-ups in my diet but I can very quickly tell because I

immediately see a change in his stools if I eat something he doesn't

tolerate. So I have a lot of incentive to stick to the diet. I'm

turning into stick-girl but it's worth it for my little guy. He is 18

mths old.

> I would also not restart chelation until you get things under much,

> much better control. Personally, I would consider ending the

> breastfeeding due to the chronic mercury exposure from your

> amalgams. That is a VERY personal choice, I know. I don't even

> know how much mercury is excreted in breast milk, but I assume it is

> not mercury-free.

I have been tearing my hair out about the breastfeeding. I'm getting

my milk tested this week. I talked to my doc about it and she

surmised there would probably be a small amount of mercury (among

other nasty things) in my milk, but she urged me to be very careful

about weighing the options as there are a ton of really critical

things in breastmilk (enzymes, fatty acids, yeast/bacteria fighters,

etc), many of which mankind doesn't even fully understand yet let

alone can duplicate. For example my son cannot tolerate any of the

enzymes I've tried, but tolerates my breastmilk just fine. I can tell

how powerful breastmilk enzymes are just by adding my milk to some

food and watching what happens, LOL!! And it's way more than that.

My son hates to be touched, and prefers to spend most of his time

stimming, but he LOVES to cuddle up with me when nursing. He stares

at me, plays with my face, giggles. He's actually content and

relaxed, even happy, and often interactive. I will reserve final

judgement until I see the results of the breastmilk testing (Doctor's

Data), but I am very very loathe to give up something so precious.

He's like a different child when nursing. Not to mention what a big

difference it makes on his sleep. Breastmilk is quite the sleep aid

for my little guy, and he sleeps too little as it is. Sigh. So many

awful choices!

> ALA can be as horrendous of a yeast-creator as DMSA. I would hold

> off on that, too, even if you do stop breastfeeding.

*nod*

> Have you checked out www.danasview.net for antibacterial/yeast

> fighting info? Dana has a huge archive of information and personal

> sucesses and failures.

Yes, and unfortunately I've tried most of them. We have yet to use

garlic or Biocidin. Planning on trying those soon.

> I wish I could help you more.

>

> Pam

Thanks for the advice :-)

[Guest guest]

Hi ,

For yeast, I'd recommend Neutrophil Plus. We've done two rounds of DMSA

since starting it and still no yeast! My daughter doesn't tolerate many

supplements and I too was leary. Diflucan, Nystatin, GSE, etc never worked

for us.

Neutrophil Plus has been a gift from above!

Orelindel

> Hi folks, looking for some advice. We did two Cutler protocol rounds of

DMSA a few weeks ago on my son with very bad results.

We just got a bottle of Neutrophil Plus so I'm going to start that as soon as we

finish this round of antibiotics. But even if he tolerates that -- always iffy

since

he is highly allergic or intolerant to many foods and supps -- I'm still

distrustful

now.

Sorry so long,

[Guest guest]

Thanks Orelindel, I will definitely try it soon. I hope it helps,

keeping my fingers crossed! How long did it take until you noticed an

effect?

>

> > Hi folks, looking for some advice. We did two Cutler protocol

rounds of

> DMSA a few weeks ago on my son with very bad results.

>

> We just got a bottle of Neutrophil Plus so I'm going to start that

as soon as we

> finish this round of antibiotics. But even if he tolerates that --

always iffy since

> he is highly allergic or intolerant to many foods and supps -- I'm

still distrustful

> now.

>

> Sorry so long,

>

>

[Guest guest]

Hi ,

I just asked my husband and we recall that it was less than a week. We

started with a half cap for the first week. Then we moved to a full cap. We

probably didn't need to because 1/2 a cap had it under control.

All the best,

Orelindel

>

> Thanks Orelindel, I will definitely try it soon. I hope it helps,

> keeping my fingers crossed! How long did it take until you noticed an

> effect?

>

>

[Guest guest]

Hi ,

Sorry you're having such a rough time. I presume he has NO mercury amalgam

dental fillings? What fillers were in the DMSA? What's his diet like? Have

you considered NAET to deal with his allergies? www.naet.com

<p>Hi folks, looking for some advice. We did two Cutler protocol

rounds<br>

of DMSA a few weeks ago on my son with very bad results. He is 28.5<br>

lbs, very high porphyrins, meets counting rules. We used 6.25 mg per<br>

dose. He reacted horribly, with zero positives and TONS of negatives<br>

which continued while off the rounds. Severe yeast despite Diflucan<br>

plus GSE, a combo that has always worked in the past. Stopped<br>

sleeping, started violent head banging all night long. All of his<br>

stimmy and OCD behaviors worsened, and his gut totally fell apart. He<br>

is a " gut kid " but we finally had it under control before starting<br>

chelation and were getting fairly good poops for weeks. But on DMSA<br>

he instantly imploded. Severe yeast and bacteria and constant<br>

diarrhea again, often a lovely shade of yellow. One month after his<br>

first round we now just barely have a handle on the yeast again, and<br>

the bacteria is back big time so we're having to go back on<br>

antibiotics which we'd managed to avoid these last 3 months. He<br>

continues to wake up multiple times during the night and during his<br>

nap, and the head banging has continued too, seems like he won't<br>

" unlearn " it. We had to move him to a playpen.<br>

<br>

I'm pretty devastated and quite honestly scared of doing another<br>

round. But he is so severely autistic and so obviously toxic! We<br>

have tried so many biomed interventions these last 6 months, even the<br>

crazily expensive HBOT, but he is a non-responder. We just got a<br>

bottle of Neutrophil Plus so I'm going to start that as soon as we<br>

finish this round of antibiotics. But even if he tolerates that --<br>

always iffy since he is highly allergic or intolerant to many foods<br>

and supps -- I'm still distrustful now. I'm thinking gee, last time<br>

he learned how to nearly give himself concussions all night long, what<br>

will he learn this time?!! He is breastfed and I have 4 amalgams so<br>

we can't risk trying ALA, and we're chelating without a doc (our doc<br>

is *massively* against this protocol and I think would try to kill<br>

us!!), so DMSA is our only option right now. Do we just wait and try<br>

again when he's older and maybe his gut is a little better? Do we<br>

wait until doc thinks he's ready and try the TD-DMSA the doc prefers?<br>

I know there may not be any answers here, but I'm at a loss and<br>

really need some input. Or maybe just a few shoulders to cry on, I dunno!<br>

<br>

Sorry so long,<br>

<br>

_______________________________________________

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

The most personalized portal on the Web!

[Guest guest]

Hi, . I'm so sorry to hear that you (and your little one) are

going through such difficult times. Can I ask your source/brand of

DMSA? I'm wondering if there are any fillers that might have caused

the negs since you said that your child is so sensitive. I've also

read about high versus low cysteine levels and how that interrelates

with sensitivity to DMSA (and other sulfur-related foods/drugs).

I'm probably not using perfect terminology here because my chelation

understanding is still at the novice level for the most part, but

I'm hoping others could weigh in on these ideas and determine if

these could be causing some (or all) of the problems you're facing.

Super best wishes and a hug to you,

Kathy in Florida

>

> Hi folks, looking for some advice. We did two Cutler protocol

rounds

> of DMSA a few weeks ago on my son with very bad results. He is

28.5

> lbs, very high porphyrins, meets counting rules. We used 6.25 mg

per

> dose. He reacted horribly, with zero positives and TONS of

negatives

> which continued while off the rounds. Severe yeast despite

Diflucan

> plus GSE, a combo that has always worked in the past. Stopped

> sleeping, started violent head banging all night long. All of his

> stimmy and OCD behaviors worsened, and his gut totally fell

apart. He

> is a " gut kid " but we finally had it under control before starting

> chelation and were getting fairly good poops for weeks. But on

DMSA

> he instantly imploded. Severe yeast and bacteria and constant

> diarrhea again, often a lovely shade of yellow. One month after

his

> first round we now just barely have a handle on the yeast again,

and

> the bacteria is back big time so we're having to go back on

> antibiotics which we'd managed to avoid these last 3 months. He

> continues to wake up multiple times during the night and during his

> nap, and the head banging has continued too, seems like he won't

> " unlearn " it. We had to move him to a playpen.

>

> I'm pretty devastated and quite honestly scared of doing another

> round. But he is so severely autistic and so obviously toxic! We

> have tried so many biomed interventions these last 6 months, even

the

> crazily expensive HBOT, but he is a non-responder. We just got a

> bottle of Neutrophil Plus so I'm going to start that as soon as we

> finish this round of antibiotics. But even if he tolerates that --

> always iffy since he is highly allergic or intolerant to many foods

> and supps -- I'm still distrustful now. I'm thinking gee, last

time

> he learned how to nearly give himself concussions all night long,

what

> will he learn this time?!! He is breastfed and I have 4 amalgams

so

> we can't risk trying ALA, and we're chelating without a doc (our

doc

> is *massively* against this protocol and I think would try to kill

> us!!), so DMSA is our only option right now. Do we just wait and

try

> again when he's older and maybe his gut is a little better? Do we

> wait until doc thinks he's ready and try the TD-DMSA the doc

prefers?

> I know there may not be any answers here, but I'm at a loss and

> really need some input. Or maybe just a few shoulders to cry on,

I dunno!

>

> Sorry so long,

>

>

[Guest guest]

Yes he has no amalgam fillings. The DMSA is from VRP, the ingredients

are Microcrystalline cellulose and hydroxypropyl methylcellulose. I

think that last one is the actual capsule itself which we don't use,

we just divide up the powder. He takes other supps containing the

first ingredient with no problems.

I've heard a lot about NAET, I think I will add it to my list of

things to try in the New Year. Just need to find someone in my area.

His diet is limited because of his allergies, it would be nice if we

had more choices. He eats chicken, turkey, beef, green beans, squash,

zucchini, apples, bananas, peaches, & pears. Everything is peeled,

seeded, cooked, and pureed. Through lots of testing, removal, and

reintros I'm rather certain he is fine with all of these.

>

> <p>Hi folks, looking for some advice. We did two Cutler

protocol rounds<br>

> of DMSA a few weeks ago on my son with very bad results. He is 28.5<br>

> lbs, very high porphyrins, meets counting rules. We used 6.25 mg

per<br>

> dose. He reacted horribly, with zero positives and TONS of

negatives<br>

> which continued while off the rounds. Severe yeast despite Diflucan<br>

> plus GSE, a combo that has always worked in the past. Stopped<br>

> sleeping, started violent head banging all night long. All of his<br>

> stimmy and OCD behaviors worsened, and his gut totally fell apart.

He<br>

> is a " gut kid " but we finally had it under control before starting<br>

> chelation and were getting fairly good poops for weeks. But on DMSA<br>

> he instantly imploded. Severe yeast and bacteria and constant<br>

> diarrhea again, often a lovely shade of yellow. One month after his<br>

> first round we now just barely have a handle on the yeast again, and<br>

> the bacteria is back big time so we're having to go back on<br>

> antibiotics which we'd managed to avoid these last 3 months. He<br>

> continues to wake up multiple times during the night and during his<br>

> nap, and the head banging has continued too, seems like he won't<br>

> " unlearn " it. We had to move him to a playpen.<br>

> <br>

> I'm pretty devastated and quite honestly scared of doing another<br>

> round. But he is so severely autistic and so obviously toxic! We<br>

> have tried so many biomed interventions these last 6 months, even

the<br>

> crazily expensive HBOT, but he is a non-responder. We just got a<br>

> bottle of Neutrophil Plus so I'm going to start that as soon as we<br>

> finish this round of antibiotics. But even if he tolerates that --<br>

> always iffy since he is highly allergic or intolerant to many foods<br>

> and supps -- I'm still distrustful now. I'm thinking gee, last time<br>

> he learned how to nearly give himself concussions all night long,

what<br>

> will he learn this time?!! He is breastfed and I have 4 amalgams so<br>

> we can't risk trying ALA, and we're chelating without a doc (our doc<br>

> is *massively* against this protocol and I think would try to kill<br>

> us!!), so DMSA is our only option right now. Do we just wait and

try<br>

> again when he's older and maybe his gut is a little better? Do we<br>

> wait until doc thinks he's ready and try the TD-DMSA the doc

prefers?<br>

> I know there may not be any answers here, but I'm at a loss and<br>

> really need some input. Or maybe just a few shoulders to cry on, I

dunno!<br>

> <br>

> Sorry so long,<br>

> <br>

>

>

> _______________________________________________

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

> The most personalized portal on the Web!

>

[Guest guest]

>

> He is actually way beyond GFCF! He is SCD minus IgG sensitivities, so

> there are basically about 10 foods that he can tolerate and will also

> eat (he's very picky and has massive sensory issues).

Does he take Houston enzymes? (sorry if you've gone over all this before)

I agree, I'd try to get his gut just a bit better before trying again,

at an even lower dosage.

Nell

[Guest guest]

And it's way more than that.

> My son hates to be touched, and prefers to spend most of his time

> stimming, but he LOVES to cuddle up with me when nursing. He stares

> at me, plays with my face, giggles. He's actually content and

> relaxed, even happy, and often interactive.

Not my decision of course, but I'd keep breastfeeding. What you're

describing would be a huge loss.

Are you taking selenium? I may be way off but it might lessen the Hg

exposure from nursing.

Nell

[Guest guest]

He did not tolerate Houston enzymes, they made his diarrhea much

worse. He gets enzymes through breastmilk though, especially since he

nurses either before or after every meal of solids. Hopefully that helps.

Yeah I guess we will play the wait-and-see game for now. I agree

about lowering the dose if we try again in the future. He just

couldn't tolerate the amount we gave him, small as it was. Maybe I'll

try dropping it to 3 or 4 mg of DMSA per dose. Gosh that seems like

such a pitiful amount, but I guess it's better than nothing!

Thanks,

>

> Does he take Houston enzymes? (sorry if you've gone over all this

before)

>

> I agree, I'd try to get his gut just a bit better before trying again,

> at an even lower dosage.

>

> Nell

>

[Guest guest]

Yeah it would be a tough loss. Hmm, there is selenium in my multi,

maybe 150 mcg. How much more should I add?

> And it's way more than that.

> > My son hates to be touched, and prefers to spend most of his time

> > stimming, but he LOVES to cuddle up with me when nursing. He stares

> > at me, plays with my face, giggles. He's actually content and

> > relaxed, even happy, and often interactive.

>

> Not my decision of course, but I'd keep breastfeeding. What you're

> describing would be a huge loss.

>

> Are you taking selenium? I may be way off but it might lessen the Hg

> exposure from nursing.

>

>

> Nell

>

[Guest guest]

Just this description alone would make me hold on to breastfeeding. I

hope you find the tested milk as mercury-free as possible!

Pam

>

> My son hates to be touched, and prefers to spend most of his time

> stimming, but he LOVES to cuddle up with me when nursing. He stares

> at me, plays with my face, giggles. He's actually content and

> relaxed, even happy, and often interactive. I will reserve final

> judgement until I see the results of the breastmilk testing (Doctor's

> Data), but I am very very loathe to give up something so precious.

> He's like a different child when nursing.

[Guest guest]

Thanks Pam, I'll let y'all know what I find out. Thanks everyone for

all the responses, everything really helps. I was pretty crushed by

my son's bad reactions, especially since I had high hopes. It's been

very comforting to get all this support.

> >

>

> > My son hates to be touched, and prefers to spend most of his time

> > stimming, but he LOVES to cuddle up with me when nursing. He stares

> > at me, plays with my face, giggles. He's actually content and

> > relaxed, even happy, and often interactive. I will reserve final

> > judgement until I see the results of the breastmilk testing (Doctor's

> > Data), but I am very very loathe to give up something so precious.

> > He's like a different child when nursing.

>

[Guest guest]

My son's selenium was low and did not respond

to supplementation. I started giving him

2 raw Brazil Nuts per day and his selenium

is now normal.

--- <pegapud@...> wrote:

> Yeah it would be a tough loss. Hmm, there is

> selenium in my multi,

> maybe 150 mcg. How much more should I add?

>

>

>

>

> > And it's way more than that.

> > > My son hates to be touched, and prefers to spend

> most of his time

> > > stimming, but he LOVES to cuddle up with me when

> nursing. He stares

> > > at me, plays with my face, giggles. He's

> actually content and

> > > relaxed, even happy, and often interactive.

> >

> > Not my decision of course, but I'd keep

> breastfeeding. What you're

> > describing would be a huge loss.

> >

> > Are you taking selenium? I may be way off but it

> might lessen the Hg

> > exposure from nursing.

> >

> >

> > Nell

> >

>

>

>

__________________________________________________

[Guest guest]

; My son banged about 20 holes in the walls with his head around

the time we began chelation. Andy told me to give him extra Vitamin

C. Two and a half years and 55 rounds of chelating later, he has

NEVER banged his head again. He's 107 pounds now and I give 125mg of

vitamin C with every dose of ALA. I used to give it with oral DMSA

which I stopped using about 6 months ago because I didn't think he

needed it.

I wouldn't be considering HBOT so young as brain cells will keep

growing for awhile.

>

> Hi folks, looking for some advice. We did two Cutler protocol

rounds

> of DMSA a few weeks ago on my son with very bad results. He is 28.5

> lbs, very high porphyrins, meets counting rules. We used 6.25 mg

per

> dose. He reacted horribly, with zero positives and TONS of

negatives

> which continued while off the rounds. Severe yeast despite Diflucan

> plus GSE, a combo that has always worked in the past. Stopped

> sleeping, started violent head banging all night long. All of his

> stimmy and OCD behaviors worsened, and his gut totally fell apart.

He

> is a " gut kid " but we finally had it under control before starting

> chelation and were getting fairly good poops for weeks. But on DMSA

> he instantly imploded. Severe yeast and bacteria and constant

> diarrhea again, often a lovely shade of yellow. One month after his

> first round we now just barely have a handle on the yeast again, and

> the bacteria is back big time so we're having to go back on

> antibiotics which we'd managed to avoid these last 3 months. He

> continues to wake up multiple times during the night and during his

> nap, and the head banging has continued too, seems like he won't

> " unlearn " it. We had to move him to a playpen.

>

> I'm pretty devastated and quite honestly scared of doing another

> round. But he is so severely autistic and so obviously toxic! We

> have tried so many biomed interventions these last 6 months, even

the

> crazily expensive HBOT, but he is a non-responder. We just got a

> bottle of Neutrophil Plus so I'm going to start that as soon as we

> finish this round of antibiotics. But even if he tolerates that --

> always iffy since he is highly allergic or intolerant to many foods

> and supps -- I'm still distrustful now. I'm thinking gee, last time

> he learned how to nearly give himself concussions all night long,

what

> will he learn this time?!! He is breastfed and I have 4 amalgams so

> we can't risk trying ALA, and we're chelating without a doc (our doc

> is *massively* against this protocol and I think would try to kill

> us!!), so DMSA is our only option right now. Do we just wait and

try

> again when he's older and maybe his gut is a little better? Do we

> wait until doc thinks he's ready and try the TD-DMSA the doc

prefers?

> I know there may not be any answers here, but I'm at a loss and

> really need some input. Or maybe just a few shoulders to cry on, I

dunno!

>

> Sorry so long,

>

>

[Guest guest]

,

Maybe look into the NCD?

Barb

[ ] afraid to continue chelation (long)

Hi folks, looking for some advice. We did two Cutler protocol rounds

of DMSA a few weeks ago on my son with very bad results. He is 28.5

lbs, very high porphyrins, meets counting rules. We used 6.25 mg per

dose. He reacted horribly, with zero positives and TONS of negatives

which continued while off the rounds. Severe yeast despite Diflucan

plus GSE, a combo that has always worked in the past. Stopped

sleeping, started violent head banging all night long. All of his

stimmy and OCD behaviors worsened, and his gut totally fell apart. He

is a " gut kid " but we finally had it under control before starting

chelation and were getting fairly good poops for weeks. But on DMSA

he instantly imploded. Severe yeast and bacteria and constant

diarrhea again, often a lovely shade of yellow. One month after his

first round we now just barely have a handle on the yeast again, and

the bacteria is back big time so we're having to go back on

antibiotics which we'd managed to avoid these last 3 months. He

continues to wake up multiple times during the night and during his

nap, and the head banging has continued too, seems like he won't

" unlearn " it. We had to move him to a playpen.

I'm pretty devastated and quite honestly scared of doing another

round. But he is so severely autistic and so obviously toxic! We

have tried so many biomed interventions these last 6 months, even the

crazily expensive HBOT, but he is a non-responder. We just got a

bottle of Neutrophil Plus so I'm going to start that as soon as we

finish this round of antibiotics. But even if he tolerates that --

always iffy since he is highly allergic or intolerant to many foods

and supps -- I'm still distrustful now. I'm thinking gee, last time

he learned how to nearly give himself concussions all night long, what

will he learn this time?!! He is breastfed and I have 4 amalgams so

we can't risk trying ALA, and we're chelating without a doc (our doc

is *massively* against this protocol and I think would try to kill

us!!), so DMSA is our only option right now. Do we just wait and try

again when he's older and maybe his gut is a little better? Do we

wait until doc thinks he's ready and try the TD-DMSA the doc prefers?

I know there may not be any answers here, but I'm at a loss and

really need some input. Or maybe just a few shoulders to cry on, I dunno!

Sorry so long,

[Guest guest]

Have you thought about getting some Virgin Coconut Milk and adding that to

his diet ?

Good Luck !

Neil

_____

From: [mailto: ]

On Behalf Of

Sent: Tuesday, December 05, 2006 10:06 PM

Subject: [ ] Re: afraid to continue chelation (long)

Thanks Pam, I'll let y'all know what I find out. Thanks everyone for

all the responses, everything really helps. I was pretty crushed by

my son's bad reactions, especially since I had high hopes. It's been

very comforting to get all this support.

> >

>

> > My son hates to be touched, and prefers to spend most of his time

> > stimming, but he LOVES to cuddle up with me when nursing. He stares

> > at me, plays with my face, giggles. He's actually content and

> > relaxed, even happy, and often interactive. I will reserve final

> > judgement until I see the results of the breastmilk testing (Doctor's

> > Data), but I am very very loathe to give up something so precious.

> > He's like a different child when nursing.

>

[Guest guest]

Hi ,

We had a really rotten time with a big regression after attempting 2

rounds of TD-DMSA (using Andy's protocol). Our son sounds similar -

ridiculously prone to gut bugs, profoundly allergic and sky high

prophyrins. He is 3 yrs old, and SCD etc. It took us a month to get

back on track gut wise (but I'll know next time to treat him for

clostridia first). We've learnt some lessons AND (the good news!)

he's just fine and even better than before. So I hope you will be

heartened.

Biggest lesson learnt (and something useful that we've been able to do

while waiting to try chelation again) was to do a lot lot more

rotation - we had depended for too long on staple treatments. For

example, S. Boulardii had been great for yeast but it hadn't been

rotated. I think we have been so afraid of his allergies that we

hadn't tested alternatives. With a course of nystatin he's been much

improved. So we've taken some time out from chelation to heal his gut

and to test him on GSE and OLE etc and a couple of different

probiotics so now we are using different things for a few days or

weeks and then swapping - it really seems to be helping.

I'm not sure if this is relevant at all but I'll mention it just

incase ...At the same time we increased to high dose NCD zeolite and

this seems to be having a good effect (though it's hard to be sure

what's doing what). He seemed to tolerate this fine and it isn't

aggravating his gut. We're not using it as an alternative chelator -

but we feel it's somehow helped fill the gap.

Very best wishes,

sandy

> >

> > Hi folks, looking for some advice. We did two Cutler protocol

> rounds

> > of DMSA a few weeks ago on my son with very bad results. He is 28.5

> > lbs, very high porphyrins, meets counting rules. We used 6.25 mg

> per

> > dose. He reacted horribly, with zero positives and TONS of

> negatives

> > which continued while off the rounds. Severe yeast despite Diflucan

> > plus GSE, a combo that has always worked in the past. Stopped

> > sleeping, started violent head banging all night long. All of his

> > stimmy and OCD behaviors worsened, and his gut totally fell apart.

> He

> > is a " gut kid " but we finally had it under control before starting

> > chelation and were getting fairly good poops for weeks. But on DMSA

> > he instantly imploded. Severe yeast and bacteria and constant

> > diarrhea again, often a lovely shade of yellow. One month after his

> > first round we now just barely have a handle on the yeast again, and

> > the bacteria is back big time so we're having to go back on

> > antibiotics which we'd managed to avoid these last 3 months. He

> > continues to wake up multiple times during the night and during his

> > nap, and the head banging has continued too, seems like he won't

> > " unlearn " it. We had to move him to a playpen.

> >

> > I'm pretty devastated and quite honestly scared of doing another

> > round. But he is so severely autistic and so obviously toxic! We

> > have tried so many biomed interventions these last 6 months, even

> the

> > crazily expensive HBOT, but he is a non-responder. We just got a

> > bottle of Neutrophil Plus so I'm going to start that as soon as we

> > finish this round of antibiotics. But even if he tolerates that --

> > always iffy since he is highly allergic or intolerant to many foods

> > and supps -- I'm still distrustful now. I'm thinking gee, last time

> > he learned how to nearly give himself concussions all night long,

> what

> > will he learn this time?!! He is breastfed and I have 4 amalgams so

> > we can't risk trying ALA, and we're chelating without a doc (our doc

> > is *massively* against this protocol and I think would try to kill

> > us!!), so DMSA is our only option right now. Do we just wait and

> try

> > again when he's older and maybe his gut is a little better? Do we

> > wait until doc thinks he's ready and try the TD-DMSA the doc

> prefers?

> > I know there may not be any answers here, but I'm at a loss and

> > really need some input. Or maybe just a few shoulders to cry on, I

> dunno!

> >

> > Sorry so long,

> >

> >

>

[Guest guest]

Read the book Coconut Oil Miracle (sorry, I don't remember the author.)

I started on Caprillic acid since my son is allergic to coconuts.

According to the book, it is supposed to clear it up quickly. I'll find

out next time we retest, though he is on other things, but we have been

fighting it for almost 1 1/2 years.

Still read the label of the coconut milk. I bought some that had soy

added to it. Coconut oil will work also and is very good for you.

Keep working on him. Getting the metals out is what is going to make

him better. Hope it works for you!

M

[ ] Re: afraid to continue chelation (long)

Thanks Pam, I'll let y'all know what I find out. Thanks everyone for

all the responses, everything really helps. I was pretty crushed by

my son's bad reactions, especially since I had high hopes. It's been

very comforting to get all this support.

> >

>

> > My son hates to be touched, and prefers to spend most of his time

> > stimming, but he LOVES to cuddle up with me when nursing. He stares

> > at me, plays with my face, giggles. He's actually content and

> > relaxed, even happy, and often interactive. I will reserve final

> > judgement until I see the results of the breastmilk testing

(Doctor's

> > Data), but I am very very loathe to give up something so precious.

> > He's like a different child when nursing.

>

[Guest guest]

>

> He did not tolerate Houston enzymes, they made his diarrhea much

> worse.

Did you try giving just the teensiest bit for a while? Most kids with

the worst gut problems have an adjustment period with enzymes when

things seem worse instead of better. Almost always lowering the dose

helps. With my son it was 2 weeks of hell (behavioral mostly), for

others as long as a few months.

Apologies if I'm telling you stuff you already know or have tried, but

I've seen Houston enzymes work miracles in so many cases.

Maybe I'll

> try dropping it to 3 or 4 mg of DMSA per dose. Gosh that seems like

> such a pitiful amount, but I guess it's better than nothing!

Oh yes. My son had a strong response to 6 mgs when he was a sturdy 5

yo. For your little guy even a tiny bit will do something, and this

whole process is about baby steps...

Nell

[Guest guest]

>

> Yeah it would be a tough loss. Hmm, there is selenium in my multi,

> maybe 150 mcg. How much more should I add?

That's plenty.

Nell

[Guest guest]

www.naet.com has a list of practitionersby state and their levels of training.

I've been to practitioners in CA, WA, & MA. (I've moved a lot).

S S

<p>Yes he has no amalgam fillings. The DMSA is from VRP, the

ingredients<br>

are Microcrystalline cellulose and hydroxypropyl methylcellulose. I<br>

think that last one is the actual capsule itself which we don't use,<br>

we just divide up the powder. He takes other supps containing the<br>

first ingredient with no problems.<br>

<br>

I've heard a lot about NAET, I think I will add it to my list of<br>

things to try in the New Year. Just need to find someone in my area.<br>

His diet is limited because of his allergies, it would be nice if we<br>

had more choices. He eats chicken, turkey, beef, green beans, squash,<br>

zucchini, apples, bananas, peaches, & pears. Everything is peeled,<br>

seeded, cooked, and pureed. Through lots of testing, removal, and<br>

reintros I'm rather certain he is fine with all of these. <br>

<br>

<br>

_______________________________________________

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

The most personalized portal on the Web!