New to the group. Please provide some information

October 28, 2001

We have a three year old daughter who has been diagnosed PDD-NOS. We

were finally able to see a developmental specialist who ordered a

number of lab tests, to the exclusion of mercury. We will be

persistent and will have her tested whether it is with this doctor or

another.

I need to know from those who have gone through this how many

children have actually tested positive? How has chellation therapy

gone? Has anybody seen improvements in their children? My daughter

is nonverbal, but seems very open to learning sign language. She

makes almost no attempt to verbally communicate, but seems to

understand almost everything I tell her.

What are the classic symptoms of mercury poisoning that would

distinguish themselves from the regular PDD-NOS/Austism spectrum

disorder characteristics?

Please post your experiences. I know it may be redundant, but I need

the help and expertise of you parents.

Thank you,

Aliza

October 28, 2001

Dear Aliza,

Hello and welcome to this group. Most of the info you are seeking can

be perused at your liesure in the " Files " section. In particular,

please read the FAQ for info about diagnostic testing, and

the " Love_Letters " file for many families' accounts of their

children's response chelation. My son with autism is four, has now

had seven rounds of DMSA-only chelation, and has made very exciting

progress.

The symptoms of autism/PDD-NOS in fact very closely parallel those of

mercury poisoning.

http://www.autism.com/ari/mercurylong.html

is a long scientific paper that explores this subject in detail.

If you'll indulge me in a suggestion that is not what you asked

about, go back to your doctor and ask for a written diagnosis of

autism spectrum disorder (ASD) for your daughter, not PDD-NOS. I say

this because sometimes Regional Centers (the state agency that should

be helping you with obtaining services for her) and school districts

will quibble about whether PDD-NOS is really a " qualifying diagnosis "

whereas autism always is. Your doctor probably said PDD-NOS because

your daughter is smart (based on her good receptive language

ability); or as a way to sugar the pill and spare you from having to

hear the dreaded A-word. Think of the word " autism " not as a death

sentence or even a reliable predictor of her future, but as a meal

ticket that will help you get her the services she needs.

You're in the right " place " and your daughter is young enough that

tremendous things are possible for her. If you will post where you

live, you will probably find other parents nearby who can help you

with local resources.

PS One more unsolicited suggestion... the book Facing Autism by Lynn

Hamilton does not address chelation, but except for that I think it's

the best all-around book for parents of new diagnosees. I

particularly recommend her chapter about " Ten Things You Can Do Right

Now " -- for example signing her up ASAP on waiting lists all over

town, since all the good service agencies invariably have long waits,

and videotaping her for future comparison purposes.

> We have a three year old daughter who has been diagnosed PDD-NOS.

We

> were finally able to see a developmental specialist who ordered a

> number of lab tests, to the exclusion of mercury. We will be

> persistent and will have her tested whether it is with this doctor

or

> another.

>

> I need to know from those who have gone through this how many

> children have actually tested positive? How has chellation therapy

> gone? Has anybody seen improvements in their children? My

daughter

> is nonverbal, but seems very open to learning sign language. She

> makes almost no attempt to verbally communicate, but seems to

> understand almost everything I tell her.

>

> What are the classic symptoms of mercury poisoning that would

> distinguish themselves from the regular PDD-NOS/Austism spectrum

> disorder characteristics?

>

> Please post your experiences. I know it may be redundant, but I

need

> the help and expertise of you parents.

>

> Thank you,

> Aliza

October 28, 2001

Dear Aliza,

Welcome. I am entering my comments in between parts of your text:

>We have a three year old daughter who has been diagnosed PDD-NOS. We

>were finally able to see a developmental specialist who ordered a

>number of lab tests, to the exclusion of mercury. We will be

>persistent and will have her tested whether it is with this doctor or

>another.

Does your comment here indicate that you realize the test which

" excluded mercury " may be inaccurate? I hope it does. Not all tests

are inaccurate, but for the most part the ones that are ordered

seem to be ones that are useless. If my comments do not make

sense, please read the " counting rules " file (in the FILES section

on the website).

>I need to know from those who have gone through this how many

>children have actually tested positive? How has chellation therapy

>gone? Has anybody seen improvements in their children? My daughter

>is nonverbal, but seems very open to learning sign language. She

>makes almost no attempt to verbally communicate, but seems to

>understand almost everything I tell her.

My impression is that almost all ASD kids have heavy metal

poisoning. I think I have a couple of refernces somewhere to

old posts where Dr. Amy Holmes talked about the hair test

results she was seeing in ASD kids (which are her entire

practice, I think). If you want I'll look for the post #

for you. I think she said that most all kids she tested

were toxic. Also, just from reading the comments on the

list (which I've been doing for over a year),

I'd say this seems true--- there are a few cases where

a kid is not toxic, or where it is not clear-- but these

seem to be the exception.

I would say that most parents who are doing chelation are

seeing improvements-- to varying degrees. The love letters

file should provide reading material for several days.

(Let me know if you don't find it right off).

>What are the classic symptoms of mercury poisoning that would

>distinguish themselves from the regular PDD-NOS/Austism spectrum

>disorder characteristics?

>

>Please post your experiences. I know it may be redundant, but I need

>the help and expertise of you parents.

Just FYI, I have no kids. I'm the exception (here) as regards to that,

please don't let it bug you. I think it would be fair to say I'm

an ally. (I'm a mercury toxic adult, doing chelation

on mySELF, and seeing progress-- slowly.) (I also post a lot on the

list.)

Moria

October 28, 2001

Hi, !

I hate to disagree with you, but ASD is not a DSMIV diagnosis. ASD is a term

that has developed in common language used by parents in discussing their

children. People use it because Autism is a well known term, but PDD is not.

However, it is getting to be with the rise is the number of children with these

diagnoses.

PDD-NOS is a DSMIV diagnosis under the Pervasive Developmental Disorders (p.65,

check it out!). Autism is a different diagnosis than PDD-NOS. Although Aliza's

daughter has received the PDD-NOS diagnosis, when she is older they may change

her diagnosis to Autism. Because of her age, or because of her presenting

overall picture, the doctor may have reasonably felt that PDD-NOS was the

correct diagnosis. More to the point, has she been diagnosed additionally with

Mental Retardation. My daughter is PDD-NOS with Mental Retardation, and my son

is also PDD-NOS with average intelligence. Incidentally, when my son was being

tested initially at the Yale Child Study Center I was told that he had scored

the highest score of any child that had ever been tested at Yale in the block

design test (99th percentile!). Cool! He'll be a world-class architect one day

(he hopes)!

School districts know the range, but the quality of programs may vary depending

upon the district, the teachers, etc. That's why it is so important that

parents know their children's educational rights and advocate strongly for their

child. No one knows their child better than the parent, but I know both of my

kids cooperate a whole lot better with other people than me. With me there are

always the parent-child issues (yeah, just keep pushing my buttons to see when

I'll put my foot down!).

Cheers!

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