Re: new member (long)

[Guest guest]

Welcome to the group, Fred.

I'm the mother of a 9 year old who was first diagnosed with ctoma at the age of

3. Like you, we also sought a second opinion and we're glad we did.

Good luck with your surgery on the 17th and please keep us posted.

Terri (mom of Troy)

P.S. My husband and I just visited your country last month and I must say, you

have a beautiful country. We can't wait to go back.

>

> From: " d3ufr4i " <d3ufr4i@...>

> Date: 2003/06/12 Thu PM 04:34:18 EDT

> cholesteatoma

> Subject: New member (long)

>

>

Hi everyone. Here is a french new member of this group. Most of you

guys seem to be US or UK residents, but I think sharing of

information can be usefull wherever it comes from.

I have been diagnosed having a C-toma in the left ear.Diagonsis

issued 3 weeks ago, thanks to a CT scan of my ear.

The whole story started a year ago. As a sound engineer (former,now?)

I always payed attention to my audition capabilities.I then noticed a

drop in the sensitivity to high frequencies.As I was in a very busy

period of work, I just thought that was " tireness " and that I could

recover with a fews days off, once the project ended. a few months

later, cracks begun te be heard upon loud peak sounds as percussions.

I was a step more worried, but, believe it or not, I couldn't afford

to quit the job.

1 month ago I woke up and realised my ear " sounded " as completely

deaf and it started expulsing pus for days. I saw a first ear-nose-

throat doctor who asked for an audiogram & tympanometry. Once the

results arrived, this guy just gave me antibiotics and told me I had

an otis media.Advising me to be glad to have lost only 50 dB on all

frequencies and to keep things as they were, taking antibiotics.

That advice didn't find an audience with me. I hooked up with a

renounded ear surgeon who asked for a CT scan. The scan showed

advanced erosion of the 2 first " earing-bones " , advanced erosion of

the " ceiling-bone " of the middle ear.This surgeon stated these

destructions were typically due to C-toma and advised to operate as

quick as possible to prevent C-Toma to gain acces to brain enveloppe,

and to remove C-toma itself of course. He also had a look to previous

tympanometry and saw that left Eustachian tube wasn't working

properly, causing a negative pressure in the middle-ear, probaly

leading to eardrum perforation and invasion of C-toma.

I'm having surgery on 17 June. I won't have the semi-circle scar

behinf the ear. They will operate thru external ear canal, with a

little incision to open it a bit larger.

Thanks to you all and other places on the net, I know what I face and

could have a deep and trustfull discussion about all the issues and

risks with my surgeon.

I know for now that reconstruction of the bones may occur only in a

few years, so I keep my patience and am just glad I asked for a

second advice.

I'll keep you informed about my condition and will do my best to help

and explain a few things to future unfortunate new-commers.

Thank you all already for the idea of having put this group together

FRED

[Guest guest]

G,day Fred

Hope things go well for you mate. Just wondering how you guys in France, the Uk and USA all get on with your ears in winter. It does not get too cold here in Central Queensland in winter, however my son does need to keep his ears warm in winter to reduce infections. Beanies suit him but get too hot for him to tolerate, any ideas anyone????

Thanks Debbie

New member (long)

Hi everyone. Here is a french new member of this group. Most of you guys seem to be US or UK residents, but I think sharing of information can be usefull wherever it comes from.I have been diagnosed having a C-toma in the left ear.Diagonsis issued 3 weeks ago, thanks to a CT scan of my ear. The whole story started a year ago. As a sound engineer (former,now?) I always payed attention to my audition capabilities.I then noticed a drop in the sensitivity to high frequencies.As I was in a very busy period of work, I just thought that was "tireness" and that I could recover with a fews days off, once the project ended. a few months later, cracks begun te be heard upon loud peak sounds as percussions. I was a step more worried, but, believe it or not, I couldn't afford to quit the job.1 month ago I woke up and realised my ear "sounded" as completely deaf and it started expulsing pus for days. I saw a first ear-nose-throat doctor who asked for an audiogram & tympanometry. Once the results arrived, this guy just gave me antibiotics and told me I had an otis media.Advising me to be glad to have lost only 50 dB on all frequencies and to keep things as they were, taking antibiotics.That advice didn't find an audience with me. I hooked up with a renounded ear surgeon who asked for a CT scan. The scan showed advanced erosion of the 2 first "earing-bones", advanced erosion of the "ceiling-bone" of the middle ear.This surgeon stated these destructions were typically due to C-toma and advised to operate as quick as possible to prevent C-Toma to gain acces to brain enveloppe, and to remove C-toma itself of course. He also had a look to previous tympanometry and saw that left Eustachian tube wasn't working properly, causing a negative pressure in the middle-ear, probaly leading to eardrum perforation and invasion of C-toma.I'm having surgery on 17 June. I won't have the semi-circle scar behinf the ear. They will operate thru external ear canal, with a little incision to open it a bit larger.Thanks to you all and other places on the net, I know what I face and could have a deep and trustfull discussion about all the issues and risks with my surgeon.I know for now that reconstruction of the bones may occur only in a few years, so I keep my patience and am just glad I asked for a second advice.I'll keep you informed about my condition and will do my best to help and explain a few things to future unfortunate new-commers.Thank you all already for the idea of having put this group togetherFRED

[Guest guest]

Katelyn (USA) wears ear muffs -- keeps her ears warm but don't

overheat her head. I've also seen something called an " ear wrap "

that is advertised for skiers -- looks like an ear muff but not

as " girlie " .

Candy

> G,day Fred

>

> Hope things go well for you mate. Just wondering how you guys in

France, the Uk and USA all get on with your ears in winter. It does

not get too cold here in Central Queensland in winter, however my son

does need to keep his ears warm in winter to reduce infections.

Beanies suit him but get too hot for him to tolerate, any ideas

anyone????

>

> Thanks Debbie

> New member (long)

>

>

> Hi everyone. Here is a french new member of this group. Most of

you

> guys seem to be US or UK residents, but I think sharing of

> information can be usefull wherever it comes from.

>

> I have been diagnosed having a C-toma in the left ear.Diagonsis

> issued 3 weeks ago, thanks to a CT scan of my ear.

>

> The whole story started a year ago. As a sound engineer

(former,now?)

> I always payed attention to my audition capabilities.I then

noticed a

> drop in the sensitivity to high frequencies.As I was in a very

busy

> period of work, I just thought that was " tireness " and that I

could

> recover with a fews days off, once the project ended. a few

months

> later, cracks begun te be heard upon loud peak sounds as

percussions.

> I was a step more worried, but, believe it or not, I couldn't

afford

> to quit the job.

>

> 1 month ago I woke up and realised my ear " sounded " as completely

> deaf and it started expulsing pus for days. I saw a first ear-

nose-

> throat doctor who asked for an audiogram & tympanometry. Once the

> results arrived, this guy just gave me antibiotics and told me I

had

> an otis media.Advising me to be glad to have lost only 50 dB on

all

> frequencies and to keep things as they were, taking antibiotics.

>

> That advice didn't find an audience with me. I hooked up with a

> renounded ear surgeon who asked for a CT scan. The scan showed

> advanced erosion of the 2 first " earing-bones " , advanced erosion

of

> the " ceiling-bone " of the middle ear.This surgeon stated these

> destructions were typically due to C-toma and advised to operate

as

> quick as possible to prevent C-Toma to gain acces to brain

enveloppe,

> and to remove C-toma itself of course. He also had a look to

previous

> tympanometry and saw that left Eustachian tube wasn't working

> properly, causing a negative pressure in the middle-ear, probaly

> leading to eardrum perforation and invasion of C-toma.

>

> I'm having surgery on 17 June. I won't have the semi-circle scar

> behinf the ear. They will operate thru external ear canal, with a

> little incision to open it a bit larger.

>

> Thanks to you all and other places on the net, I know what I face

and

> could have a deep and trustfull discussion about all the issues

and

> risks with my surgeon.

>

> I know for now that reconstruction of the bones may occur only in

a

> few years, so I keep my patience and am just glad I asked for a

> second advice.

>

> I'll keep you informed about my condition and will do my best to

help

> and explain a few things to future unfortunate new-commers.

>

> Thank you all already for the idea of having put this group

together

>

>

> FRED

>

>

>

>

[Guest guest]

G,day Candy

Thanks for that mate. I will look into the ear wrap (my brother lives in Melbourne) he might be able to find one for me. Nick ended up with an ear infection today and the specialist said 3 strikes all winter and he needs to return to Brisbane. As I said it does not get too cold here sometimes it does get nippy when the wind is strong so most headwear is inappropriate.

Thanks for all the wonderful support from everyone it has been tremendous.

Debbie (mum of Nick aged 9).

New member (long)> > > Hi everyone. Here is a french new member of this group. Most of you > guys seem to be US or UK residents, but I think sharing of > information can be usefull wherever it comes from.> > I have been diagnosed having a C-toma in the left ear.Diagonsis > issued 3 weeks ago, thanks to a CT scan of my ear. > > The whole story started a year ago. As a sound engineer (former,now?) > I always payed attention to my audition capabilities.I then noticed a > drop in the sensitivity to high frequencies.As I was in a very busy > period of work, I just thought that was "tireness" and that I could > recover with a fews days off, once the project ended. a few months > later, cracks begun te be heard upon loud peak sounds as percussions. > I was a step more worried, but, believe it or not, I couldn't afford > to quit the job.> > 1 month ago I woke up and realised my ear "sounded" as completely > deaf and it started expulsing pus for days. I saw a first ear-nose-> throat doctor who asked for an audiogram & tympanometry. Once the > results arrived, this guy just gave me antibiotics and told me I had > an otis media.Advising me to be glad to have lost only 50 dB on all > frequencies and to keep things as they were, taking antibiotics.> > That advice didn't find an audience with me. I hooked up with a > renounded ear surgeon who asked for a CT scan. The scan showed > advanced erosion of the 2 first "earing-bones", advanced erosion of > the "ceiling-bone" of the middle ear.This surgeon stated these > destructions were typically due to C-toma and advised to operate as > quick as possible to prevent C-Toma to gain acces to brain enveloppe, > and to remove C-toma itself of course. He also had a look to previous > tympanometry and saw that left Eustachian tube wasn't working > properly, causing a negative pressure in the middle-ear, probaly > leading to eardrum perforation and invasion of C-toma.> > I'm having surgery on 17 June. I won't have the semi-circle scar > behinf the ear. They will operate thru external ear canal, with a > little incision to open it a bit larger.> > Thanks to you all and other places on the net, I know what I face and > could have a deep and trustfull discussion about all the issues and > risks with my surgeon.> > I know for now that reconstruction of the bones may occur only in a > few years, so I keep my patience and am just glad I asked for a > second advice.> > I'll keep you informed about my condition and will do my best to help > and explain a few things to future unfortunate new-commers.> > Thank you all already for the idea of having put this group together> > > FRED> > > >

[Guest guest]

,

Welcome to the list. Comment interspersed.

S S

Here's our situation, briefly, followed by a few questions: <br>

<br>

Diagnosis: Our son was diagnosed with PDD-NOS at 22 months; we saw <br>

signs (little eye contact and no speech) much earlier but were told <br>

that " boys are slow, " and " twins are slow " etc. His twin sister is not <br>

ASD but has some behavioral traits (mainly aggression) that are <br>

troubling. Besides speech and some social interaction problems, there <br>

are no other symptoms (like gastro-intestinal troubles, diarrhea, <br>

tantrums, etc.)<br>

<br>

Mercury exposure: flu shot while pregnant, flu shot to both children <br>

at 8 months. Each shot contained 25mcg of thimerosal. No MMR <br>

vaccination (stopped all shots after 12-month round.)<br>

<br>

*Did they get Hep-B at birth? Other vaccines? Do you have ANY mercury amalgam

dental fillings?

Related toxins: living in 1850's house until a few months ago (now <br>

live in newish house).<br>

*Newish houses usually have toxins, too.

<br>

Current treatment: 1) ABA started at 25 months (18 hours/week); 2) at <br>

26 months, we saw a DAN doctor and started chelation (TD-DMSA) and <br>

methyl B-12 shots, plus supplementation (liquid iron, supernu-thera, <br>

omega-3, and melatonin). We're supposed to be giving lithium (4.5g) to <br>

our daughter, for aggression, but so far we've not been able to <br>

procure any over-the-counter.<br>

<br>

*What dose and dosing schedule?

Lab tests: Our son's blood tests showed some lead (3.8), as well as <br>

high folate (hence the B-12 shots), and some IGs are high (??). His <br>

twin sister's blood, just tested, also showed lead toxicity, as well <br>

as aluminum. Hair tests confirmed these results for both children. <br>

We've not been able to collect urine, so chelation is being monitored <br>

via blood tests alone. Since the regimen of chelation/shots began on <br>

our son, he went from have two words to over 30 (it's been 5 weeks). <br>

We are heartened greatly.<br>

<br>

Misc: 1) I'm still breast-feeding these children (who are now 27 <br>

months old); I am concerned about what toxic substances they may be <br>

getting from me, so am having myself tested, too (hair, blood, and <br>

urine). 2) Both kids had massive dental decay – had multiple crowns, <br>

extractions, and root canals at 20 months.

*Any idea why?

3) No diet changes tried <br>

yet, as DAN doctor sees no indication of allergies. 4) Told by <br>

developmental pediatrician that my husband and I caused the problem, <br>

as we are both " systematizers " (engineer, statistician-<wbr>psychologist)<wbr>.

<br>

*Find different dev. pediatrician.

<br>

I have a few questions for anyone with the time and inclination to <br>

answer:<br>

<br>

1) What are the natural methods for chelating (as opposed to <br>

prescription ointments/shots)<wbr>? Some of you have mentioned ALA, EDTA, <br>

but I don't know what these are. Also, I heard somewhere that Epsom <br>

salts in the bath would help, and my health-food store's self-styled <br>

chelation " expert " recommended drinking aloe vera juice, of all <br>

things. I'm reluctant to do any research on the internet as it's all <br>

so very confusing.<br>

*ALA is alpha lipoic acid and the oral form is available without a prescription.

It chelates arsenic and mercury. Oral DMSA is also available without a

prescription and chelates both mercury (from the body, but not the brain) and

lead. Please use these according to Andy's protocol to avoid redistribution.

See the FAQs of this list for more info.

<br>

2) Have any of you tested your children or yourselves for the MTHFR <br>

gene?<br>

<br>

3) What is the best way to replace lost minerals while undergoing <br>

chelation?<br>

<br>

*Supplementation on both " on " and " off " days.

4) Any tips on collecting urine from children still in diapers? We <br>

tried the condom collection kit, but have had not had any luck.<br>

<br>

5) Anyone had luck getting kids to take these supplements? Mine seem <br>

to be able to detect the smallest amount of anything added to their <br>

drinks/pudding/<wbr>etc., and refuse it. (So my kids are basically getting <br>

no supplementation.<wbr>)<br>

<br>

*There's a file about getting supplements into kids.

6) Have any of you given lithium to your child? If so, how did it work <br>

and where did you obtain the lithium?<br>

<br>

7) Don't understand the " counting rules " – my DAN doctor said don't <br>

worry about them. Is there a website that explains them? I'd like to <br>

understand the whole thing very deeply.<br>

*The counting rules are in the FAQs of this list. They help one determine if

mercury toxicity is an issues since for most mercury toxic people mercury does

NOT show as high on a hair test but instead causes disordered mineral transport.

They are also explained in Andy Cutler's " Hair Test Interpretation " book.

<br>

8) Finally, can anyone tell me about that NY legislation mandating <br>

health insurance coverage for autism?<br>

<br>

*The counting rules really only apply to DDI hair elements test. If you're in

NY, how did you get a hair test? I thought they were illegal there.

Thanks for your time. I've been a member for a while now but until now <br>

didn't feel like I knew enough to even post an introduction. I'm <br>

mindful that you are all very busy (understatement)<wbr>, so I appreciate <br>

any and all replies. You (mercury-autism and chelating-kids groups) <br>

are my principal source of support, aside from my spouse.<br>

<br>

Kind regards,<br>

<br>

_______________________________________________

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

The most personalized portal on the Web!

[Guest guest]

>

>

> ,

> Welcome to the list. Comment interspersed.

> S S

>

>

Thanks, , and thanks for your speedy reply!

>

> *Did they get Hep-B at birth? Other vaccines? Do you have ANY

mercury amalgam dental fillings?

>

I have one filling (probably amalgam). Hep-B not at birth (we refused)

, but within a week. All other vaccines were on schedule, until we

stopped at 15m.

> Related toxins: living in 1850's house until a few months ago (now

<br>

> live in newish house).<br>

>

> *Newish houses usually have toxins, too.

> <br>

Okay, thanks for the comment.

> Current treatment: 1) ABA started at 25 months (18 hours/week); 2)

at <br>

> 26 months, we saw a DAN doctor and started chelation (TD-DMSA) and

<br>

> methyl B-12 shots, plus supplementation (liquid iron, supernu-thera,

<br>

> omega-3, and melatonin). We're supposed to be giving lithium (4.5g)

to <br>

> our daughter, for aggression, but so far we've not been able to <br>

> procure any over-the-counter.<br>

> <br>

>

> *What dose and dosing schedule?

>

Dosing schedule for TD-DMSA - started at 50 mg 2 x day for 3 days, 11

days off. Now it's up to 75 mg, same frequency of administration. For

the B-12 shots, 750 mcg every 3 days; now it's the same amount every

other day.

> extractions, and root canals at 20 months.

>

> *Any idea why?

Dentist told me that it was a socially communicable virus -- some kind

of strep. The kids have otherwise been so healthy -- 3 colds between

them. We gave tylenol (ironically) mainly to cope with vaccinations

(and teething pain).

>

> 3) No diet changes tried <br>

> yet, as DAN doctor sees no indication of allergies. 4) Told by <br>

> developmental pediatrician that my husband and I caused the problem,

<br>

> as we are both " systematizers " (engineer,

statistician-<wbr>psychologist)<wbr>. <br>

>

> *Find different dev. pediatrician.

Was encouraged to see her by the psychologists who gave the autism dx.

Will never see her again!

>

> <br>

> I have a few questions for anyone with the time and inclination to

<br>

> answer:<br>

> <br>

> 1) What are the natural methods for chelating (as opposed to <br>

> prescription ointments/shots)<wbr>? Some of you have mentioned ALA,

EDTA, <br>

> but I don't know what these are. Also, I heard somewhere that Epsom

<br>

> salts in the bath would help, and my health-food store's self-styled

<br>

> chelation " expert " recommended drinking aloe vera juice, of all <br>

> things. I'm reluctant to do any research on the internet as it's all

<br>

> so very confusing.<br>

>

> *ALA is alpha lipoic acid and the oral form is available without a

prescription. It chelates arsenic and mercury. Oral DMSA is also

available without a prescription and chelates both mercury (from the

body, but not the brain) and lead. Please use these according to

Andy's protocol to avoid redistribution. See the FAQs of this list

for more info.

>

Thanks! I will look at the FAQs.

> <br>

> 2) Have any of you tested your children or yourselves for the MTHFR

<br>

> gene?<br>

> <br>

> 3) What is the best way to replace lost minerals while undergoing

<br>

> chelation?<br>

> <br>

> *Supplementation on both " on " and " off " days.

>

Okay.

> 4) Any tips on collecting urine from children still in diapers? We

<br>

> tried the condom collection kit, but have had not had any luck.<br>

> <br>

> 5) Anyone had luck getting kids to take these supplements? Mine seem

<br>

> to be able to detect the smallest amount of anything added to their

<br>

> drinks/pudding/<wbr>etc., and refuse it. (So my kids are basically

getting <br>

> no supplementation.<wbr>)<br>

> <br>

>

> *There's a file about getting supplements into kids.

Thanks! Again, I will look at the FAQs.

>

> 6) Have any of you given lithium to your child? If so, how did it

work <br>

> and where did you obtain the lithium?<br>

> <br>

> 7) Don't understand the " counting rules " – my DAN doctor said don't

<br>

> worry about them. Is there a website that explains them? I'd like to

<br>

> understand the whole thing very deeply.<br>

>

> *The counting rules are in the FAQs of this list. They help one

determine if mercury toxicity is an issues since for most mercury

toxic people mercury does NOT show as high on a hair test but instead

causes disordered mineral transport. They are also explained in Andy

Cutler's " Hair Test Interpretation " book.

>

Thanks for the information.

> <br>

> 8) Finally, can anyone tell me about that NY legislation mandating

<br>

> health insurance coverage for autism?<br>

> <br>

>

> *The counting rules really only apply to DDI hair elements test. If

you're in NY, how did you get a hair test? I thought they were

illegal there.

My DAN doc sends the hair to a Vermont lab, I believe. (Why would this

test be illegal anyway?!!!)

-

[Guest guest]

So much to tell --

MTHFR is mutated for my son as is for most mercury toxic kids.

Have you tested your child for high testosterone? Please listen to the Geiers

& Dr. Buttar:

http://www.autismmedia.org/media4.html

Brennan- <energy_n_light@...> wrote:

Hi everyone:

Here's our situation, briefly, followed by a few questions:

Diagnosis: Our son was diagnosed with PDD-NOS at 22 months; we saw

signs (little eye contact and no speech) much earlier but were told

that " boys are slow, " and " twins are slow " etc. His twin sister is not

ASD but has some behavioral traits (mainly aggression) that are

troubling. Besides speech and some social interaction problems, there

are no other symptoms (like gastro-intestinal troubles, diarrhea,

tantrums, etc.)

Mercury exposure: flu shot while pregnant, flu shot to both children

at 8 months. Each shot contained 25mcg of thimerosal. No MMR

vaccination (stopped all shots after 12-month round.)

Related toxins: living in 1850's house until a few months ago (now

live in newish house).

Current treatment: 1) ABA started at 25 months (18 hours/week); 2) at

26 months, we saw a DAN doctor and started chelation (TD-DMSA) and

methyl B-12 shots, plus supplementation (liquid iron, supernu-thera,

omega-3, and melatonin). We're supposed to be giving lithium (4.5g) to

our daughter, for aggression, but so far we've not been able to

procure any over-the-counter.

Lab tests: Our son's blood tests showed some lead (3.8), as well as

high folate (hence the B-12 shots), and some IGs are high (??). His

twin sister's blood, just tested, also showed lead toxicity, as well

as aluminum. Hair tests confirmed these results for both children.

We've not been able to collect urine, so chelation is being monitored

via blood tests alone. Since the regimen of chelation/shots began on

our son, he went from have two words to over 30 (it's been 5 weeks).

We are heartened greatly.

Misc: 1) I'm still breast-feeding these children (who are now 27

months old); I am concerned about what toxic substances they may be

getting from me, so am having myself tested, too (hair, blood, and

urine). 2) Both kids had massive dental decay – had multiple crowns,

extractions, and root canals at 20 months. 3) No diet changes tried

yet, as DAN doctor sees no indication of allergies. 4) Told by

developmental pediatrician that my husband and I caused the problem,

as we are both " systematizers " (engineer, statistician-psychologist).

I have a few questions for anyone with the time and inclination to

answer:

1) What are the natural methods for chelating (as opposed to

prescription ointments/shots)? Some of you have mentioned ALA, EDTA,

but I don't know what these are. Also, I heard somewhere that Epsom

salts in the bath would help, and my health-food store's self-styled

chelation " expert " recommended drinking aloe vera juice, of all

things. I'm reluctant to do any research on the internet as it's all

so very confusing.

2) Have any of you tested your children or yourselves for the MTHFR

gene?

3) What is the best way to replace lost minerals while undergoing

chelation?

4) Any tips on collecting urine from children still in diapers? We

tried the condom collection kit, but have had not had any luck.

5) Anyone had luck getting kids to take these supplements? Mine seem

to be able to detect the smallest amount of anything added to their

drinks/pudding/etc., and refuse it. (So my kids are basically getting

no supplementation.)

6) Have any of you given lithium to your child? If so, how did it work

and where did you obtain the lithium?

7) Don't understand the " counting rules " – my DAN doctor said don't

worry about them. Is there a website that explains them? I'd like to

understand the whole thing very deeply.

8) Finally, can anyone tell me about that NY legislation mandating

health insurance coverage for autism?

Thanks for your time. I've been a member for a while now but until now

didn't feel like I knew enough to even post an introduction. I'm

mindful that you are all very busy (understatement), so I appreciate

any and all replies. You (mercury-autism and chelating-kids groups)

are my principal source of support, aside from my spouse.

Kind regards,

---------------------------------

Music Unlimited - Access over 1 million songs.Try it free.

[Guest guest]

I think I can help you with your question number 4. We initially used

the pediatric urine collectors with a lot of leaking, but a friend of

ours told us that the secret was the diaper itself. So, ... when you

placed the PUC in your child, also place the diaper with a hole right

in the middle. The empty PUC should go through this hole. We use long

pants when doing urine collection so that our son does not play with

the PUC! It works really well and urine collection is no longer a

problem at home.

Hope this helps some,

> Hi everyone:

>

> Here's our situation, briefly, followed by a few questions:

>

> Diagnosis: Our son was diagnosed with PDD-NOS at 22 months; we saw

> signs (little eye contact and no speech) much earlier but were told

> that " boys are slow, " and " twins are slow " etc. His twin sister is not

> ASD but has some behavioral traits (mainly aggression) that are

> troubling. Besides speech and some social interaction problems, there

> are no other symptoms (like gastro-intestinal troubles, diarrhea,

> tantrums, etc.)

>

> Mercury exposure: flu shot while pregnant, flu shot to both children

> at 8 months. Each shot contained 25mcg of thimerosal. No MMR

> vaccination (stopped all shots after 12-month round.)

>

> Related toxins: living in 1850's house until a few months ago (now

> live in newish house).

>

> Current treatment: 1) ABA started at 25 months (18 hours/week); 2) at

> 26 months, we saw a DAN doctor and started chelation (TD-DMSA) and

> methyl B-12 shots, plus supplementation (liquid iron, supernu-thera,

> omega-3, and melatonin). We're supposed to be giving lithium (4.5g) to

> our daughter, for aggression, but so far we've not been able to

> procure any over-the-counter.

>

> Lab tests: Our son's blood tests showed some lead (3.8), as well as

> high folate (hence the B-12 shots), and some IGs are high (??). His

> twin sister's blood, just tested, also showed lead toxicity, as well

> as aluminum. Hair tests confirmed these results for both children.

> We've not been able to collect urine, so chelation is being monitored

> via blood tests alone. Since the regimen of chelation/shots began on

> our son, he went from have two words to over 30 (it's been 5 weeks).

> We are heartened greatly.

>

> Misc: 1) I'm still breast-feeding these children (who are now 27

> months old); I am concerned about what toxic substances they may be

> getting from me, so am having myself tested, too (hair, blood, and

> urine). 2) Both kids had massive dental decay – had multiple crowns,

> extractions, and root canals at 20 months. 3) No diet changes tried

> yet, as DAN doctor sees no indication of allergies. 4) Told by

> developmental pediatrician that my husband and I caused the problem,

> as we are both " systematizers " (engineer, statistician-psychologist).

>

> I have a few questions for anyone with the time and inclination to

> answer:

>

> 1) What are the natural methods for chelating (as opposed to

> prescription ointments/shots)? Some of you have mentioned ALA, EDTA,

> but I don't know what these are. Also, I heard somewhere that Epsom

> salts in the bath would help, and my health-food store's self-styled

> chelation " expert " recommended drinking aloe vera juice, of all

> things. I'm reluctant to do any research on the internet as it's all

> so very confusing.

>

> 2) Have any of you tested your children or yourselves for the MTHFR

> gene?

>

> 3) What is the best way to replace lost minerals while undergoing

> chelation?

>

> 4) Any tips on collecting urine from children still in diapers? We

> tried the condom collection kit, but have had not had any luck.

>

> 5) Anyone had luck getting kids to take these supplements? Mine seem

> to be able to detect the smallest amount of anything added to their

> drinks/pudding/etc., and refuse it. (So my kids are basically getting

> no supplementation.)

>

> 6) Have any of you given lithium to your child? If so, how did it work

> and where did you obtain the lithium?

>

> 7) Don't understand the " counting rules " – my DAN doctor said don't

> worry about them. Is there a website that explains them? I'd like to

> understand the whole thing very deeply.

>

> 8) Finally, can anyone tell me about that NY legislation mandating

> health insurance coverage for autism?

>

> Thanks for your time. I've been a member for a while now but until now

> didn't feel like I knew enough to even post an introduction. I'm

> mindful that you are all very busy (understatement), so I appreciate

> any and all replies. You (mercury-autism and chelating-kids groups)

> are my principal source of support, aside from my spouse.

>

> Kind regards,

>

>

>

>

>

>

>

> ---------------------------------

> Music Unlimited - Access over 1 million songs.Try it free.

>

>

[Guest guest]

>

> So much to tell --

>

> MTHFR is mutated for my son as is for most mercury toxic kids.

Does having MTHFR confirmed change treatment decisions at all?

Nell

[Guest guest]

4) Told by

> developmental pediatrician that my husband and I caused the

problem,

> as we are both " systematizers " (engineer, statistician-

psychologist).

The cluelessness is just breathtaking, isn't it?

>

> I have a few questions for anyone with the time and inclination to

> answer:

>

> 1) What are the natural methods for chelating (as opposed to

> prescription ointments/shots)?

Read the files of this list, especially the introduction at Moria's

site. The list of Andy posts is helpful too. If you want to know more

about particular subjects, the onibasu search engine (accessed on the

home page) is fabulous.

>Also, I heard somewhere that Epsom

> salts in the bath would help, and my health-food store's self-

styled

> chelation " expert " recommended drinking aloe vera juice, of all

> things.

Epsom baths help with sulfation, which helps with processing toxins

like food dye, but Epsom salts don't chelate heavy metals. Some

people have reported aloe as good for the gut, but it's not a

chelator either.

Most people who talk about chelation have no idea what they're

talking about.

> I'm reluctant to do any research on the internet as it's all

> so very confusing.

Yes, it is. I suggest hanging out here for awhile and reading like

crazy until it starts to make sense.

>

> 2) Have any of you tested your children or yourselves for the

MTHFR

> gene?

I don't see the point. If the majority of autistic kids have it, and

it doesn't point treatment in a particular direction, I save my $$

for other stuff.

>

> 3) What is the best way to replace lost minerals while

undergoing

> chelation?

Taking lots of supplements 3-4X/day, every day.

> 6) Have any of you given lithium to your child? If so, how did

it work

> and where did you obtain the lithium?

I got mine from a health food store. Lithium aspartate and lithium

orotate are 2 pretty easy to find forms. With my son, supping it

didn't help, but YMMV. You could search onibasu to find other

experiences with it.

>

> 7) Don't understand the " counting rules " – my DAN doctor said

don't

> worry about them. Is there a website that explains them? I'd like

to

> understand the whole thing very deeply.

Good for you. Go to Moria's site through the files, read a ton, and

come back here with questions.

Nell

[Guest guest]

> > MTHFR is mutated for my son as is for most mercury toxic kids.

>

> Does having MTHFR confirmed change treatment decisions at all?

>

> Nell

It doesn't change what you do, neither do most of the other supposed

genetic variations that may be found through some of the more popular

alternative lab testing.

In fact, I have seen many cases where predictions are made based on

things like MTHFR variants that are the exact opposite of what was

observed for the individual in question.

The common interpretations of most of these variations made in the

" DAN! community " is not related to reality. I want to make it clear I

am NOT blaming DAN! itself for anything - to the best of my knowledge

they have not taken a position and are simply waiting to see if any of

this stuff helps (which I think is quite responsible). They have no

real control over what practitioners on their list do that then they

get credit or blame for.

Andy

[Guest guest]

> Have you tested your child for high testosterone? Please listen

to the Geiers & Dr. Buttar:

>

> http://www.autismmedia.org/media4.html

Most children do not test high (on legitimate lab tests), yet Lupron

is used regardless.

I have seen situations where it is high and in these cases it is

appropriate to intervene to lower it, not otherwise.

Lupron actually does something quite different than what it is stated

to do by doctors in this general field (autism treatment) and may have

some relevant action unrelated to testosterone.

The idea that testosterone traps mercury is not techncially accurate.

Andy

[Guest guest]

Hi ,

Welcome and thank you for your post. My comments are interspersed.

> Diagnosis: Our son was diagnosed with PDD-NOS at 22 months; we saw

> signs (little eye contact and no speech) much earlier but were told

> that " boys are slow, " and " twins are slow " etc. His twin sister is

not

> ASD but has some behavioral traits (mainly aggression) that are

> troubling. Besides speech and some social interaction problems,

there

> are no other symptoms (like gastro-intestinal troubles, diarrhea,

> tantrums, etc.)

You are right to look at possible issues for your daughter as well.

My NT daughter's test was even more conclusive for mercury toxicity

than my son's was. Some members of this list have treated

aggression very succesfully through " gut " protocols (digestive

enzymes, Culturelle probiotics if there is a bacteria issue, etc.) so

even without obvious gut issues, I wouldn't rule gut problems out;

they can manifest in strange ways. Of course, if metal toxicity

issues are the root cause, as they usually seem to be, then a good

chelation protocol is essential.

>

> Mercury exposure: flu shot while pregnant, flu shot to both

children

> at 8 months. Each shot contained 25mcg of thimerosal. No MMR

> vaccination (stopped all shots after 12-month round.)

>

> Related toxins: living in 1850's house until a few months ago (now

> live in newish house).

>

Old houses are a great source of lead, as I'm sure you already know...

> Current treatment: 1) ABA started at 25 months (18 hours/week); 2)

at

> 26 months, we saw a DAN doctor and started chelation (TD-DMSA) and

> methyl B-12 shots, plus supplementation (liquid iron, supernu-

thera,

> omega-3, and melatonin). We're supposed to be giving lithium (4.5g)

to

> our daughter, for aggression, but so far we've not been able to

> procure any over-the-counter.

You can get OTC lithium orotate at www.vrp.com. This is also a good

source of OTC DMSA, and many other products.

>

> Lab tests: Our son's blood tests showed some lead (3.8), as well as

> high folate (hence the B-12 shots), and some IGs are high (??). His

> twin sister's blood, just tested, also showed lead toxicity, as

well

> as aluminum. Hair tests confirmed these results for both children.

> We've not been able to collect urine, so chelation is being

monitored

> via blood tests alone. Since the regimen of chelation/shots began

on

> our son, he went from have two words to over 30 (it's been 5

weeks).

> We are heartened greatly.

YAY!!! :-)

>

> Misc: 1) I'm still breast-feeding these children (who are now 27

> months old); I am concerned about what toxic substances they may be

> getting from me, so am having myself tested, too (hair, blood, and

> urine).

Good idea. I breastfed my son until he was nearly three. I'm still

unsure of exactly what benefits/harm I can attribute to extended

breatfeeding. We have certainly reaped the benefits of a close, warm

relationship and possibly better immune function (no early ear

infections = no early rX for antibiotics = maybe less yeast

issues??), but who really knows? I meet the counting rules, and my

children appear to have some toxicities that could only have come

from me. Of course, much of that exposure would have been in

utero.... This is an individual choice, and at 27 months you can be

sure that they have reaped lots of immune system/emotional benefits,

so if you decide to gently wean you can be confident that you have

done your best to give them a good start.

2) Both kids had massive dental decay – had multiple crowns,

> extractions, and root canals at 20 months.

You may want to investigate vitamin, mineral and trace mineral

deficiencies. I *think mentioned Vanadium recently. CoQ10

and vitamin C are good for gum issues, and there are many more

necessary nutrients. Diet can play a huge role, and not just because

of the usual sugar issue. You could research this at

www.westonaprice.org (go to their search utility, there will be lots

and lots of info under " tooth decay " , etc.) You could also look this

up in the archives at www.vrp.com (the site with OTC lithium) and

www.lef.org . They should have some articles/links to studies, etc.

3) No diet changes tried

> yet, as DAN doctor sees no indication of allergies. 4) Told by

> developmental pediatrician that my husband and I caused the

problem,

> as we are both " systematizers " (engineer, statistician-

psychologist).

Well, I have some words to say here, but I might get thrown off

Autism Mercury! I hope you can let this one roll off you. You

deserve better.

>

> I have a few questions for anyone with the time and inclination to

> answer:

>

> 1) What are the natural methods for chelating (as opposed to

> prescription ointments/shots)? Some of you have mentioned ALA,

EDTA,

Many of us use oral ALA and DMSA. ALA is a substance that is

actually found naturally in our bodies and is used only an

antioxidant, not as a chelator, by most people. However, it IS also

a very important chelator as it can easily pass through the blood

brain barrier to extract mercury from the brain. (There are links to

studies on this use of ALA in the archives, on Moria's site.) Used

with respect, it is a powerful tool. Most on this list tend to avoid

EDTA, Andy advises against it for mercury toxic people. (If you want

to know why, you could go to www.onibasu, click " Autism Mercury " , and

put EDTA and andrewhallcutler into the search engine. You should

come up with something useful.

> but I don't know what these are. Also, I heard somewhere that Epsom

> salts in the bath would help,

You can find good info on epsom salts here: www.enzymestuff.com and

in the " sulfurstories " group archives, or email me offlist if

you wish.

and my health-food store's self-styled

> chelation " expert " recommended drinking aloe vera juice, of all

> things. I'm reluctant to do any research on the internet as it's

all

> so very confusing.

Yup. I don't *think aloe vera juice is going to help much with

chelating heavy metals, though it's good for constipation.

Trustworthy chelation information is hard to come by. There is a lot

of misinformation that is either useless or downright harmful. I do

take comfort in the fact that the protocol developed by Andy Cutler

has been used safely and successfully for years by many, many

children and adults. It's got a good track record (and a longer

track record than any DAN! based chelation protocols), and so far the

information I've received from this group and from Andy himself (via

his books and direct help) has proven solid.

> 3) What is the best way to replace lost minerals while

undergoing

> chelation?

There is a good supplement file in the file section of this group.

Atthe end of the file you will find the recommended supps for

chelation. They are given every day, minerals and water soluble

viamins are split into 3-4 doses/day.

> 7) Don't understand the " counting rules " – my DAN doctor said

don't

> worry about them. Is there a website that explains them? I'd like

to

> understand the whole thing very deeply.

Well, most DAN doctors use different approaches. (Often they

recommend challenge tests, which can be dangerous, inaccurate, and

should be declined.) The best way to understand the counting rules

is to get the book " Hair Test Interpretation " , available at

www.noamalgam.com , and read it over and over. :-) I'd get " Amalgam

Illness " at the same time, it covers the chelation protocol in depth.

You (mercury-autism and chelating-kids groups)

> are my principal source of support, aside from my spouse.

Mine, too. Welcome!!!

best wishes

René

[Guest guest]

Is this true? I thought the Jill research didn't show MTHFr

mutations at any stastically significant rate in Autistics vs the

general population.

My son has MTHFR mutations.

Pam

>

> So much to tell --

>

> MTHFR is mutated for my son as is for most mercury toxic kids.

>

[Guest guest]

While on MTHFR topic

I have fraternal twins. The one with the double mutation on the MTHFR

is actually less autistic, although he is definitely delayed. Either

way we were very glad we tested, since this mutation causes errors in

homocysteine levels which lead to heart problems later in life. We

can do the folate/B12/TMG stuff with him now. The vitamins do seem to

have improved his coherence. He is not being chelated.

The other boy had no MTHFR mutations, but are still looking for a

defective enzyme. With him I suspect the MUT enzyme or possibly the

succinate dehydrogenase enzyme, which also has iron-sulfur cluster

involved, since he has symptoms of methylmalonic aciduria. However

these symptoms were absent on previous tests, so it's quite likely the

problem with the enzyme is not a mutation, but an inhibition by

metals. His recent tests have shown lower mercury, higher lead, than

in the past. This one is being chelated.

Mark

> >

> > So much to tell --

> >

> > MTHFR is mutated for my son as is for most mercury toxic kids.

> >

>

[Guest guest]

> 1) What are the natural methods for chelating (as opposed to

> prescription ointments/shots)? Some of you have mentioned ALA, EDTA,

> but I don't know what these are.

I used ALA, alpha lipoic acid, available OTC from local health food

stores.

>> Also, I heard somewhere that Epsom

> salts in the bath would help,

Good for detox, especially phenol intolerance issues

http://www.danasview.net/phenol.htm

> 5) Anyone had luck getting kids to take these supplements?

I mixed supplements into peanut butter and honey, and then taught my

kids how to swallow capsules. They knew they were required to take

the supplements, even if they did not want to.

http://www.enzymestuff.com/discussionmixing.htm

http://www.danasview.net/capsules.htm

Dana

[Guest guest]

Thank you so much, everyone, for all your comments and suggestions.

You've provoked a lot of thinking and discussion for me and my

partner, and we can see that we've got much work to do researching

everything. I'm so glad to be here, and I can really see that I am in

the right place. Thanks also to those of you who emailed me privately,

sharing suggestions and your own stories.

Kind regards,

[Guest guest]

>

> You are right to look at possible issues for your daughter as well.

> My NT daughter's test was even more conclusive for mercury toxicity

> than my son's was. Some members of this list have treated

> aggression very succesfully through " gut " protocols (digestive

> enzymes, Culturelle probiotics if there is a bacteria issue, etc.) so

> even without obvious gut issues, I wouldn't rule gut problems out;

> they can manifest in strange ways. Of course, if metal toxicity

> issues are the root cause, as they usually seem to be, then a good

> chelation protocol is essential.

>

Aggression, negative disposition, and mood swings in my NT little girl is what

got us on

this path. We had some rocky early years, and then by a fluke, an online friend

suggested

trying enzymes. We put her on HNI enzymes, and eventually Culturelle, in 2004

and the

change was dramatic, within a week. Wow, a happy flexible kid!

At the end of 2005, as I began to understand that her exposure to Hg and

possibly Pb was

at the root of her problem, we did DDI hair tests on my dd, as well as on myself

and my

older NT kid. We all met the counting rules. We just finished round 27, and

it is going

well. No regrets about starting chelation. Much gratitude to have stumbled

across the

information.

in Illinois

[Guest guest]

,

I'm not really qualified to answer any of your questions except 4) and

6). In my opinion the best way to collect urine from a child in diapers

is with an adhesive collection bag. Put the bag on when the child will

be sleeping, and check it often. Then empty the bag into an empty urine

container. It's tedious and requires your constant effort, but it works

and then you can forget about it until next time.

Lithium is dicey. In the first place, I don't think the 4.5 grams that

you mentioned in your post is correct. That would be a lethal dose in

an adult. With therapeutic doses of lithium you have to be scrupulous

about hydration, check levels, watch for side effects and monitor kidney

function probably at least monthly. At a supplemental dose, I'm not

sure you would see much effect. Personally, I think lithium has poor

risk:benefit ratio and I would not use it in my own child unless there

were no alternative including other meds or doing nothing.

Jim

________________________________

From:

[mailto: ] On Behalf Of Brennan-

Sent: Sunday, July 02, 2006 9:11 AM

Subject: [ ] new member (long)

Hi everyone:

Here's our situation, briefly, followed by a few questions:

Diagnosis: Our son was diagnosed with PDD-NOS at 22 months; we saw

signs (little eye contact and no speech) much earlier but were told

that " boys are slow, " and " twins are slow " etc. His twin sister is not

ASD but has some behavioral traits (mainly aggression) that are

troubling. Besides speech and some social interaction problems, there

are no other symptoms (like gastro-intestinal troubles, diarrhea,

tantrums, etc.)

Mercury exposure: flu shot while pregnant, flu shot to both children

at 8 months. Each shot contained 25mcg of thimerosal. No MMR

vaccination (stopped all shots after 12-month round.)

Related toxins: living in 1850's house until a few months ago (now

live in newish house).

Current treatment: 1) ABA started at 25 months (18 hours/week); 2) at

26 months, we saw a DAN doctor and started chelation (TD-DMSA) and

methyl B-12 shots, plus supplementation (liquid iron, supernu-thera,

omega-3, and melatonin). We're supposed to be giving lithium (4.5g) to

our daughter, for aggression, but so far we've not been able to

procure any over-the-counter.

Lab tests: Our son's blood tests showed some lead (3.8), as well as

high folate (hence the B-12 shots), and some IGs are high (??). His

twin sister's blood, just tested, also showed lead toxicity, as well

as aluminum. Hair tests confirmed these results for both children.

We've not been able to collect urine, so chelation is being monitored

via blood tests alone. Since the regimen of chelation/shots began on

our son, he went from have two words to over 30 (it's been 5 weeks).

We are heartened greatly.

Misc: 1) I'm still breast-feeding these children (who are now 27

months old); I am concerned about what toxic substances they may be

getting from me, so am having myself tested, too (hair, blood, and

urine). 2) Both kids had massive dental decay - had multiple crowns,

extractions, and root canals at 20 months. 3) No diet changes tried

yet, as DAN doctor sees no indication of allergies. 4) Told by

developmental pediatrician that my husband and I caused the problem,

as we are both " systematizers " (engineer, statistician-psychologist).

I have a few questions for anyone with the time and inclination to

answer:

1) What are the natural methods for chelating (as opposed to

prescription ointments/shots)? Some of you have mentioned ALA, EDTA,

but I don't know what these are. Also, I heard somewhere that Epsom

salts in the bath would help, and my health-food store's self-styled

chelation " expert " recommended drinking aloe vera juice, of all

things. I'm reluctant to do any research on the internet as it's all

so very confusing.

2) Have any of you tested your children or yourselves for the MTHFR

gene?

3) What is the best way to replace lost minerals while undergoing

chelation?

4) Any tips on collecting urine from children still in diapers? We

tried the condom collection kit, but have had not had any luck.

5) Anyone had luck getting kids to take these supplements? Mine seem

to be able to detect the smallest amount of anything added to their

drinks/pudding/etc., and refuse it. (So my kids are basically getting

no supplementation.)

6) Have any of you given lithium to your child? If so, how did it work

and where did you obtain the lithium?

7) Don't understand the " counting rules " - my DAN doctor said don't

worry about them. Is there a website that explains them? I'd like to

understand the whole thing very deeply.

8) Finally, can anyone tell me about that NY legislation mandating

health insurance coverage for autism?

Thanks for your time. I've been a member for a while now but until now

didn't feel like I knew enough to even post an introduction. I'm

mindful that you are all very busy (understatement), so I appreciate

any and all replies. You (mercury-autism and chelating-kids groups)

are my principal source of support, aside from my spouse.

Kind regards,

This is a confidential message intended solely for the person(s) to whom it is

addressed. If you receive this message in error, please forward it to the

correct person(s), or delete it immediately. Email is not guaranteed secure or

error-free; therefore, VMRC does not accept liability for transmission-related

error or omission in the content of this message.

http://www.vmrc.net

[Guest guest]

>

> ,

>

> I'm not really qualified to answer any of your questions except 4)

and

> 6). In my opinion the best way to collect urine from a child in

diapers

> is with an adhesive collection bag. Put the bag on when the child

will

> be sleeping, and check it often. Then empty the bag into an empty

urine

> container. It's tedious and requires your constant effort, but it

works

> and then you can forget about it until next time.

>

> Lithium is dicey. In the first place, I don't think the 4.5 grams

that

> you mentioned in your post is correct. That would be a lethal dose

in

> an adult. With therapeutic doses of lithium you have to be

scrupulous

> about hydration, check levels, watch for side effects and monitor

kidney

> function probably at least monthly. At a supplemental dose, I'm not

> sure you would see much effect. Personally, I think lithium has

poor

> risk:benefit ratio and I would not use it in my own child unless

there

> were no alternative including other meds or doing nothing.

>

> Jim

>

Dear Jim,

Yes, the lithium sounds scary. There seem to be many different kinds,

so I'm not sure I'd get the right one. My DAN doc did say 4.5mg/day.

You say that's a " lethal " dose for an adult??? Now I'm really worried.

Her aggression isn't that bad -- it's not like she's an axe murderer

or anything!

I've tried the adhesive diaper collection kit -- the urine doesn't go

in the bag, it just collects on the outside of the adhesive and

crystalizes in the diaper. Someone earlier suggested cutting a hole in

the diaper. I think I'll try that. I'll also probably have to poke my

finger in the collection condom to add air so that the urine can more

easily fill it. It won't be sterile, but hey, it's better than

nothing.

I'm amazed at what you parents (and now us) go through -- from the

finances; researching endlessly; travelling to special doctors; paying

for not just the doctors but the drugs, therapy, supplements, and

special diet (not cheap); trying to get the supplements into the

children, collecting blood/urine/stool for tests, etc. Many of you

work full time, too, and have other children. Some are single parents,

too. Many have not told friends or family. (I've told friends but not

family! I keep hoping that the diagnosis was wrong, although we've now

got two diagnoses.)

Imagine how great it'd be if someone came up with a clear, cogent

understanding of what causes autism and how to cure it relatively

effortlessly? Imagine what we could then spend our time on?

-

[Guest guest]

Hi

Maybe I can clear this up...

In your original post you said you were supposed to give 4.5 GRAMS of

lithium a day, not milligrams. Dr. Poppelwell (sorry, hope my

spelling's okay) was responding to that.

It happens, sometimes one of us will get the amounts (g, mg, mcg)

mixed up and end up scaring everybody. :-)

take care

René

> Yes, the lithium sounds scary. There seem to be many different

kinds,

> so I'm not sure I'd get the right one. My DAN doc did say 4.5mg/day.

> You say that's a " lethal " dose for an adult??? Now I'm really

worried.

[Guest guest]

Oh, goodness me, Rene, you're right. I meant milligrams in the

original post, not grams! Thanks for pointing that out...still

skittish thinking about accidentally administering a lethal dose.

-

> > Yes, the lithium sounds scary. There seem to be many different

> kinds,

> > so I'm not sure I'd get the right one. My DAN doc did say 4.

5mg/day.

> > You say that's a " lethal " dose for an adult??? Now I'm really

> worried.

>

[Guest guest]

Dear Dana,

Thank you for pointing me to your website, it was very helpful. I'm

thinking of buying your book; can tell me if it summarizes the

treatment and the cause of " autism " in a nutshell?

I noticed that many on this site use ALA; after reading some of A.

Cutler's posts, I wonder if I'm getting the right treatment for my

kids. Sounds much faster to use the DMSA/ALA combo around the clock

for a few days on/few days off, done in 5-6 weeks. We do have lead

issues, so I can see that DMSA should not be paired with ALA

initially. But I wonder why some DAN docs advocate the 3 days on/11

days off treatment (usually TD), and others advocate oral DMSA every 3

hours.

On a related note, I've heard that the TD is the least effective, and

actually the suppositories are the most effective next to IV

chelation. So the oral chelation must be somewhere betw the

suppositories and the TD.

Anyway, I loved your site, particularly the " success stories " section.

Kind regards,

> > 1) What are the natural methods for chelating (as opposed to

> > prescription ointments/shots)? Some of you have mentioned ALA,

EDTA,

> > but I don't know what these are.

>

>

> I used ALA, alpha lipoic acid, available OTC from local health food

> stores.

>

>

> >> Also, I heard somewhere that Epsom

> > salts in the bath would help,

>

>

> Good for detox, especially phenol intolerance issues

>

> http://www.danasview.net/phenol.htm

>

>

> > 5) Anyone had luck getting kids to take these supplements?

>

>

> I mixed supplements into peanut butter and honey, and then taught my

> kids how to swallow capsules. They knew they were required to take

> the supplements, even if they did not want to.

>

> http://www.enzymestuff.com/discussionmixing.htm

>

> http://www.danasview.net/capsules.htm

>

> Dana

>

[Guest guest]

>

> So much to tell --

>

> MTHFR is mutated for my son as is for most mercury toxic kids.

>

> Have you tested your child for high testosterone? Please listen

to the Geiers & Dr. Buttar:

>

> http://www.autismmedia.org/media4.html

>

>

>

I suspect that testosterone plays a role, because my son has autism

but might daughter doesn't. They are both mercury toxic (according to

2 out of the 3 'counting rules') and have about the same level of

lead. Does knowing the testosterone level affect treatment choices?

Thanks for your input,

[Guest guest]

There are a few mutations which show a " suceptability " to mercury. According to

the Geiers, MTHFR is one of them. I have read other doctors disagree with this.

noaholiviaian <phaselow@...> wrote: Is this true? I thought the

Jill research didn't show MTHFr

mutations at any stastically significant rate in Autistics vs the

general population.

My son has MTHFR mutations.

Pam

>

> So much to tell --

>

> MTHFR is mutated for my son as is for most mercury toxic kids.

>

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