Re:EWG Report ---- Autism report news release 12.13.04-Theresa

[Guest guest]

Theresa,

As far as testing goes, we didn't do all the viral panels that are

lsited in the book, our doctor tested my son as what he saw as the

problems. My son didn't exhibit viral symptoms, I took him to

allergist/immunologist because ped neurologist gave me NOTHING to go

on, she jsut told me to continue with therapy etc, and bring him back

in a year and if focusing was still an issue, ... I saw where that

was leading and vowed I wouldn't be coming back to see her. The

doctor I am taking my son to has been doing this for 30 plus years,

so one gets a feel for this over time, he told me, what he has been

seeing in children over the past 10 years is a total deterioration in

cognition that is fueled by something yet to be named... but he said

it will be bigger than the tobacco lawsuits.He said this is huge

breakthru, for our generation health wise, we are the products of an

over immunized generation producing over assaulted children who are

then further assaulted.

Did you know that HiB vaccine contains 8 viruses in one vaccine?

Neither did I, coupled along with the other one they get at that

visit, I know my son received DTap at the same visit so count it up

that is 11 viruses at once, and who remembers those early visits?

Don't take your child out in public places for first several weeks,

keep ill people away, they can't localize an infection well because

the blood brain barrier isn't formed yet, well hello, injecting that

many viruses at one time to a baby that has not fully developed

immune system, I honestly don't think they did the research needed at

our childrens expense. I remember calling Merck after a bad reaction

to Varivax, they honestly told me when they did the initial research

they did not follow after 42 days, that was it, not one follow up

study. Sounds like a bit of vioxx goiing on there.

Enough about that. Anyway, my son's doctor said he sends all

his " suspect patients " , whatever their diagnosis, AD/ADHD, speech

disorders, tourette kids, anyone with any hint of learning disability

issue to Jill , not just autistic children, because he said it

is the SAME exact cause, just manifests differently, and he said the

numbers match, they all seem to have the same exact issue, not

detoxing, and over time it is accumulating. So like I said the

initial study is for autictic children because that was the focus,

however evidence proves otherwise, they seem to all be coming back

with the same out of whack numbers.So rather than it being a working

hypothesis, I believe it just blossomed into including other

children. Even, get this, a friend of mine niece is 20 years old,

received Hep b to get into college 2 years ago, child had hx of

diabetes developed chronic fatigue, migraines, had to withdraw out of

school last May, couldn't keep up. The mom took her to my son's

doctor, she too had same exact problem, now doing much better on same

treatments, she only started 6 weeks ago, but feels much improved, so

this goes way beyond autism.

As far as testing went, he did amino acid panel,(fasting,)urine

organic acid then your routine labs, cbc,SMA28, thyroid panel thyroid

antibodies, myelin basic protein antibodies,(guess that is a viral

indication) celiac panel, homocysteine, folate, rbc folate, vitamin

b1,b6 and b12 , T and B cell enumeration IgG,A,M,E, IGG subclasses 1-

4, amonia pyruvate and lactate levels, and lipid panel.

As far as getting more info for the study, that I will have to ask

Doctor about, I knwo there are several doctors working with her who

they are I don't know. I know of several different studies going on,

but most all are autism directed, and according to Jill , she

feels this is the main area that the problems will come from seeing

the improvements accross the board, alot of the other studies seem to

be too scattered gene wise.I hope this helps, and again just ask, I

would be more than willing to point youin the direction you need, if

I can.Good luck with your move.

Colleen -- In , Theresa Truax

<tltbaku@y...> wrote:

>

> Colleen and Everyone,

>

> Thanks so fantastically much for this! I'm going to digest it all

and will probably ask some clarifying questions based on what I know

from the Children with Starving Brains book, which basically sets out

what Binstock told me was a " middle of the road " DAN!

protocol. I know, for example, that testing and evaluation is

important, so I will want to know if the tests you included hee are

the only tests that were run, rather than all the standard ones

first, etc. As a frist reaction, how did you implement this diet?

Wow, I have tons of work to do just to get started on it! I've been

figuring out how to implement the GF/CF, but to add soy, egg and corn

to the banned list takes away many of my substitute foods! Anyone

know of an asian cookbook for kids? But I am in jest -- we will

figure it all out, not to worry -- I'm just venting in a vaguely

humorous way!

>

> Do you know if there is a way for me to get more information on the

S Jill study you are part of, other articles by her, contact

information for her? I would very much like the docotor (and

associated laboratory - the European Laboratory of Nutrients) we have

contacted here and who has attended several DAN! conferences in the

US to contact her about this. Perhaps she can give us more

information for our docotors here on the protocol for the study you

are with. Can you tell me or point me to infomration on what the

working hypothesis of the study you're with is, why it included non-

autistic children, etc? Is this a published clinical trial or

something? If so, there is probably a website that announces it.

Anything you can give me would be great as I must get most of my info

through the internet.

>

> I am still in a transition period and will hopefully be moving

today into our temporary housing today (3 months) as we await our

furniture's arrival by ship. It MAY take me several days to get

online again, I just don't know. Please bear with my silence if I

don't respond immediately.

>

> I am very excited about this and feel very strongly that it could

help us. I hope that others will try it, too.

>

> Much love and peace to all of you and Happy New Year,

> Theresa

>

>

> Colleen, is

>

> Message: 6

> Date: Tue, 28 Dec 2004 05:56:28 -0000

> From: " deverelementary "

> Subject: Re:EWG Report ---- Autism report news release 12.13.04

>

>

> Theresa,

>

> No problem, strict gf/cf/soyfree/preservative,egg,chocolate,corn,

> corn syrup,peanut,sugar, color/dye free,fluoride free for one

month,

> second month begin nutritional supplements:

> Nuthera 2 capsules a day one am one pm

> TMG one am one pm

> Folinic Acid(folinic NOT folic) two capsules a day one am one pm

> The above are the supplements to drastically increase glutathione

> (MAJOR anti-oxidant in the body, boys have less than females,

illness

> lowers it, so do environmental assaults ie,vaccines, car

> exhaust,pesticides in foods, etc)

>

> Diet wise second month challenge foods, sugar in excess for a day,

> watch for reactions,reactions may last as long as 3 days, ANY

change

> is significant, looser stools,firmer stools, sleepy,hyper, red

> eyes,red ears,behavior.

>

> If no reaction challenge another food, say dyes, give kool aid in

> excess, the mix you make with regular sugar one food item you

already

> challenged and had no reaction to.Wait 3 days, then do say,

> preservatives, let them eat a hot dog that has preservatives(major

> offender BHT, MSG)

>

> Once you are aware of what causes issues, you just don't let them

eat

> it, meanwhile still gf/cf. As time goes on and body/heatlh is

> improving, a little skittles here or there, or starburst is ok.

> Major to the improvements is getting bowel movements daily, we were

> told to use:(42 pound 6 year old)

> Magnessium citrate one teaspoon daily (1/2 am 1/2 pm)

> Zinc one teaspoon daily at bedtime (away from food, doesn't absorb

> well w/food in stomach.

> ProEFA 3 caps daily, on it's own

>

> Month 3 we added methyl b 12 every other day, steady

> balance/coordintaion improvements the longer we gave this beynd the

3

> month study dictates.

> N-AC was added to the mix in month 4 huge nurturing/affctionate

> skills came with this one, reading ability skyrocketed, major

> handwriting improvements/neatness/speed.Teacher told me at last

> parent teacher conference (November, he is way ahead of the other

> children (mainstream 1st grade, no IEP, no speech, no OT/PT)in all

> areas, reading, spelling, math. I was speechless, but had noticed

it

> all at home with his ability to read his sisters pleasure books,

> Lemony snickets series.)

>

> Teacher said, he is ALWAYS focused and in tune, she said she wished

> the whole class would do what he is doing.

> Turn the clock back one year ago, he was crying in class,unable to

> pronounce letters, or sounds of them, chewing his clothing,(came

home

> many a day with missing shirt buttons), sppech therapy twice a

weeek,

> one step foward two backwards. no consistancy with progress, same

as

> for PT/OT, one day ability was there, the next day gone.

Consistantly

> inconsistant.

>

> We are still in the study, and as mentioned above it is what we are

> doing, now in the process, of cutting down on the m b12, to see

what

> his right fit is, it is not a deficiency of b12 that drives this,

it

> is the inablity of the body to use the form it has, so more of a

> dependancy of mb12, so we are trying to find his lowest dose of

need,

> and on we go..

>

> Just a point of note, DIET is major here, you really can't do one

> without the other, it is a sensitivity issue, any inflammation

> impedes the nutritional uptake of what the child needs, and the

most

> common offenders are gluten/casein.The immune system is totally

> regulated in the gut, it is where glutathione is formed with the

> liver/intestines/stomach being the sources of this process.

>

> The things she measured that would indicate reduced ability to

detox

> would be a low methionine level, low homocysteine, low cysteine

> level.these numbers were accross the board with AD/ADHD, autism,

CAPD

> the numbers were not any different among the children, the only

thing

> different was the childs response to these numbers, they are all

> affected differently.

>

> She did a thiol profile, which measures other detox pathways in the

> body, I believe there are six pathways she tested for, but the most

> prevalent, (which is according to researchers, about 40% of

> caucasions)is the MTHFR gene, some of the others she tested came in

> around 20-30% some only 10-15% so that is what McCAndeles mentions

is

> the appendix of children with starving brains, most common and

> TMG/Folinic/Mb12 does the trick.Unfortunately Jill lab is the

> only lab in the country doing the blood testing, at this point.

>

> Being homozygous for MTHFR you have a 60 % reduced ability to detox

> toxins, heterozygous a 30% reduced ability, we are heterozygous all

6

> of us at our household.And my son (I have 3 girls also) is the only

> one that has had a problem, I do see some things in my girls but

not

> affecting them cognitively, and my youngest wont be getting anymore

> vaccines, just to be on the safe side.

>

> I have sent 9 people to get tested(not related to me in anyway) and

> all 9 are positive, and they all have kids that have various

issues,

> CAPD, AD/ADHD, speech disorders, PDD, autism.And their kids are all

> positive also, so pretty statistically significant if you are a

> numbers person.

>

> One thing to note, a starting point bllod work wise, my son's blood

> was the only one from our house that was sent to Jill because

> of his cognitive issues, doctor sent our bloods to regular lab, for

>

> Methylenetetrahydrofolate Reductse (MTHFR)

> Homocysteine,

> serum b12,

> rbc folate

> b6

>

>

> As far as brand of supplements for the study, they were all

Kirkmans,

> and Proefa was Nordic Naturals. Not pushing any Kirkmans products

but

> was part of the study for research purposes, no variables.

>

> So, Theresa, that is most of it in a LONG nut shell, I hope this

> helps you get to where we are, and you are way ahead of the game,

she

> is sooooo young, the younger the better.Good luck, and e-mail me

when

> ever you have any questions, be so glad to help if I can, the

results

> are amazing to say the least.

>

> Colleen

>

>

>

>

[Guest guest]

Hi all,

I'm back online and am just now devouring all the important materials

Colleen has sent to us. How will we ever be able to thank you, Colleen?

If there is anyone interested in heavy metal toxicity and neurodevelopmental

/ learning disorders, a very interesting first read is a book called

" Turning Lead Into Gold: How Heavy Metal Poisoning Can Affect Your Child and

How to Prevent and Treat It, " by Halladay , RN and Zigurts Strauts,

MD. It was written in 1995, so it won't have all the new research on

glutathione, new chelating agents, the DAN! protocol, etc. But it is quite

amazing how much these people knew then about what was going on and it does

detail a variety of heavy metals, where they come from in the environment

(not vaccines in this book, so you have to order Cave's book for

info on vaccines, or the new one on mercury and vaccines that is due out

soon) and what you can do to prevent environmental exposure. Halliday had a

pair of twins who were severely ADHD with autistic tendencies -- so much so

that her descriptions of them make them look like a couple of " wild child "

kids. They would tear of every stitch of their clothes, eat walls and car

upholstery (severe pica), smear their feces everywhere, etc. They could

barely take the boys on an outing, it was so bad. Strauts was the doctor who

first proposed heavy metals as the cause and chelation as the " cure " (of

course the new research suggests that a " cure " is far more complex

than just chelating). They tested them for body burden of heavy metals and

chelated them and extremely large amounts of lead, arsenic, cadmium, and

more came out of their bodies. The twins improved immediately, and after 18

months and 6 rounds of chelating had lost their diagnoses and displayed only

mild symptoms in two out of fourteen indices on which they previously had

scored severe. Interestingly, Hallaway found that many kids in her

neighborhood of North Vancouver, British Columbia, had neurodevelopmental

disorders -- those who were chelated were either " cured " or were vastly

improved. It's a very interesting read, even if it is 10 years old, and it

relates to all the new research coming out and to what Colleen has

experienced. When, Halladay asks, will we be ready to except the evidence?

Good question... Maybe now with all this research by S. Jill and

colleagues.

Another interesting article I found online is by Neubrander, MD, one

of ' colleagues in the new research, and the one who has done the most

research on methylcobalamin (methyl B12). The article is from 2003, before

all the new work he's been doing with on glutathione and

methylcobalamin -

http://www.autisme-montreal.com/congres/2003/Neubrander.html Make sure to

follow the links at the bottom of the page to see the rest of his materials.

He has the entire protocol he uses for methylcobalamin injections, and it is

a VERY interesting read. In citing some of the research literature on

methylcobalamin he says this: methylcobalamin deficiency found in early

infancy shows developmental delay and hypotonia; transmethylation by

methylcobalamin may induce functional recovery from ischemia;

methylcobalamin's direct and/or indirect role in protection from

demyelination and/or its potential role in remyelination. These are just

some highlights I thought everyone here would be interested in. And guess

what one sign of B12 deficiency is -- abnormal gait -- sound like global

apraxia?

Binstock of the Autism Research Institute told me the following about

the methyl B12 connection: " The current interest in mB12 (methylcobalamin)

comes from Neubrander, MD, and from many clinicians' results

therewith, from findings of Jill , PhD. Also, there is so much positive

anecdotal evidence that the MIND Institute is launching a mB12 study in

collaboration with Autism Research Institute. " I believe that she was

referring to the UC MIND Institute. Here's their website:

http://www.ucdmc.ucdavis.edu/mindinstitute/ They have a large database of

clinical studies they are doing, some of which may be applicable and several

other interesting elements on their website such as their position on

vaccines and lots of resources.

Okay all, I've got to run and try to stock up our new kitchen with supplies

and help my beloved husband with our dearly beloved daughter!

Lots of love to you and yours,

Theresa

[Guest guest]

Colleen,

Thank you so much! So your doc has been in the know for 30 yrs,what a

find!Where are you located?Does he know of any likeminded docs in VA?We live in

Va Beach area,and

the lack of any knowledge or interest in biomedical interventions is

unbelievable.I recently switched peds and the new one is nice but old thinking

is hard to overcome.I know she would give me a referal if asked,she offered to

give me one to Dr.Megson but she does not take insurance

I agree with you competely with the immunization link,my 11 yr old dd HFA

regressed after her 18 mo shots,she continues to have regressions from time to

time.Autism for her has been the gift that keeps on giving.My 13 yr old ds has

aspergers,He has made tremendous progress with gfcf diet and CLO.The differences

between the two,my dd stayed ill and was on antibiotics off and on for years.And

they were born in different states

Again thank you so much for all the great information,it is so very appreciated

Theresa in Va