tni stuff
remy kinchen
obfuscate - 1.to confuse; bewilder; stupefy.
Whew! I certainly am! However, I won't give up!
Slow-learner,
Debbie mom to Dixi Kay (Ds) 4 more days til 1
Tamera Ragan
Mary:
If I had the power to send compiled data, I'd have done so long ago. I have
personally seen about a dozen profiles - people who have called for
interpretation or posted for interpretation, information freely shared and
not solicited.
Now, if you want to see these results in a form acceptable to you, then *you*
call the labs and ask for it and do the work. *You* take on the expense of
getting consent. *You* take on the expense of postage costs to get the same
accomplished. I'd love to volunteer, but frankly, I've got a family and
other responsiblities that take higher priority at the moment, and frankly,
I've already committed a substantial share of my families resources to
providing information to other parents. It's your turn now. You do it
instead of just talking about it.
I really don't intend to come across as mean-spirited here either. But I do
beleive that if you'd spend some of that energy finding out what I already
have, instead of *demanding* that I - or somebody else - do it for you, you
just might learn something that differs with your current belief system.
You are free to believe what you like. I shared what I have found to be
reliable information from my personal experience which includes seeing some
test results from parents who were looking for more direction. I didn't keep
them. I am not a research scientist. Look to those who are for the data.
Ask them for it. I don't need to see it. I've seen enough.
Tamera
Mary Wilt
RICK MCELWEE wrote:
> THe one thing we do have is our ancedotal evidence. I can say that Sean
> is most definately healthier with the vitamins. And I hope his brain is
> being saved any degeneration by nutritional supplementation. If it's
> not, then at least I have the knowledge that he is healthier. If he's
> not healthy, he can't go to school. If he's not healthy he can't
> concentrate, and doesn't feel like learning. Neither do I when I feel
> bad.
But Sandra, this is a perfectly wonderful, supportable and compelling
statement, and the kind I would like to hear more often. You are saying
what you have observed about your child; you are not saying that the
product has been proven to [fill in the blank]. I'm as interested as
anyone else in the anecdotal evidence presented. I just don't want to
see false claims, and conjectures passed off as proven fact. I never
said the supplement might not keep kids healthier and even that there
may be other, as yet undetermined, benefits. I hope for this as much as
anyone.
> ANYWAY, My point is, Sean is tested, monitored, and gets every therapy I
> can find. I am not blindly following any 'literature' without doing
> some of my own checking. I take claims for any product with a grain of
> salt, but here the proof is in my child.
What any good parent would do. Thanks for sharing your story.
mary
Mary Wilt
this is long, skip if you are sufficiently enraged at this point:
Date: Sun, 9 Nov 1997 09:59:37 -0500
From: Tamera Ragan <TheR...@AOL.COM>
Subject: Clinic, observational study, love and stimulation - TNI stuff
I am going to provide responses to the questions posed via several
e-mails
(and folks) in this one. If you're interested in the response, read on.
Holly wrote:
<<I think that too many parents are depending on "tni" to help their
children
along. I personally think good parenting skills and lots of stimulation
are
the answer.>>
Holly, as much as I love and stimulate Daniel, that will not and can not
and
did not address his repeated infections, poor appetite, sleeplessness
and
poor growth. Fortuantely, the supplements did help in these areas,
thereby
keeping this sleep deprived and continually concerned mom from turing
into a
complete basket case.
Comments like these concern me because the convey a negative stero-type
of a
group of parents. We all know that streo-types are rarely accurate, and
resent them when they are used towards our children. Many spend much
time
quashing the negative stero-type of our kids that have existed for
years.
********************************
TRI, on the other hand, doesn't care about this new stereotype they are
creating of helpless, hopeless ill people doomed to early senility?
How'd you like to run that one past a few adult self advocates, Tamera?
How do you think that particular stereotype would play at a People First
Convention?
Not to mention the stereotype of the rest of us as child abusers...
**********************************
Mary asked:
<<Why has Dr. Leichtman been prohibited from publishing his study
results?
Isn't Pantox run by a member of the TRI board? Charles Thomas, I
believe.>>
I will explain this as briefly as possible and refer you to Dr.
Leichtman for
further comment. Dr. Leichtman matched controls from an existing
database at
his former employer. Somewhere between the time he started the work and
the
time he was prepared to publish, a policy change came into effect, of
which
he was not aware, requiring consent from controls prior to publishing,
thereby prohibiting the data form being published.
********************************
Wouldn't requiring consent be a standard medical practice? Why would
anything be collected from a patient for research purposes without
consent in the first place?
*****************************
However,
he has not been prohibited from referring to his work or discussing his
work.
That is why interested parties either need to attend one of his
lectures or
give him a call.
**************************
Why? Is he displaying the study results at his lectures? This would be
an interesting way of getting around the "do not publish" promise. Is he
sending the study out to those who call? Interesting.
**************************
As to Dr. Thomas. Indeed he is a member of the TRI SAC. Membership in
the
TRI SAC no more constitutes that TRI can control a person's actions any
more
than being a member of the Tidewater Down Syndrome Association implies
that
TDSA has control over what you chose to do or not do, Mary.
*****************************
Of course it doesn't, Tamera, and that is not the point. I am not
profiting from my association to TDSA. Thomas stands to profit from the
TRI recommendation that lab work only be done at his lab, and if you
can't see the conflicts of interest in that, never mind.
*************************
If you would
like to see Pantox results published, then I suggest you give Dr. Thomas
a
call and explain to him how imprtant this is to parents who are seeking
substantial information.
******************************
No, what I want is for TRI to stop saying there is a DS profile when in
fact you have no way of documenting this, substantiating this, or even
proving it to anyone, you have no data, you have nothing. Nothing but
Madison Lawerence's profile.
******************************************
Mary asks:
<<What work would this be, Tamera? Is this the same study you are
encouraging people to call and ask him about in another post? The
"investigational study"? Is this the same study you said earlier today
he was "prohibited" from publishing?
If this study is so miraculous, if it in fact shows something that
benefits TRI, why don't YOU ALL publish it? Put it up on some TRI web
site. Send it around. All we get are references to it, and to the
marvelous statistical evidence found therein. Where is the study?
At this point, whether it is peer reviewed in a medically related
journal appears to be somewhat moot. You have been talking about this
study a long time. If you're going to keep referrring to it as "proof"
of something, it would be darn nice to see the thing. How do we know it
"substantiates" anything? Where is the study?>>
It is not an investigational study, it is an observational study.
Observational studies are considered scientific when porerly conducted.
*******************************
Who said they weren't? I asked for the results. You say you cannot
produce them, question answered.
*******************************
Mary writes:
<<This is very much like your constant reference to the "usual blood
profile" (to paraphrase) found in DS. According to some sources there
have been thousands and thousands of profiles done on children with
DS...that's how you all can keep telling us what the "usual and
customary" findings in DS are...right? You do have actual data, don't
you? Someone has actually collected some profiles and seen that there
actually <IS> some commonality...haven't they?
Where is THAT data?>>
I have already answered these questions in previous posts that perhaps
you
have not read yet. If you still have questions after reading those
posts
(and this one too) then I'd be happy to help you out.
*********************************
You're not helping out. You're obfuscating.
mary
RICK MCELWEE
Mary Wilt wrote:
> *********************************
>
> You're not helping out. You're obfuscating.
>
> mary
OOOH! I had to get out my dictionary! To make obscure...Well, it is my
opinion...OPINION, that this is too difficult of a subject for us
parents, not scientists, to argue. When the actual medical reports are
asked for and the references we used, i.e. Dr. Swenson's site, and
private Dr.'s advice, Medical Abstracts that refer to specific
components of the TNI protocol, and many things that are not in my
memory banks (and usually are remembered wrong by me...Dr. Capone, Dr.
Crocker, both begin with the same letter, I am aweful with names!)it's
hard to understand the information muchless repeat it with any hope of
sounding intelligent ;>)
THe one thing we do have is our ancedotal evidence. I can say that Sean
is most definately healthier with the vitamins. And I hope his brain is
being saved any degeneration by nutritional supplementation. If it's
not, then at least I have the knowledge that he is healthier. If he's
not healthy, he can't go to school. If he's not healthy he can't
concentrate, and doesn't feel like learning. Neither do I when I feel
bad.
I have seen several posts that people's Nutritionists and Dr.'s have
said there are no harmful levels of any the ingredients in the vitamins.
My own Pediatrition has told me this, as has a friend's nutritionist.
So this I know for myself, not just other's speculations.
As far as the Piracetam goes, that I feel is a very personal decision.
(well, so are the vitamins) But, in Sean's case, his cognitive
abilities are so much greater on Piracetam than off of it, I really hope
the day never comes that I have to take him off of it. As many on the
TNI list know I did an experiment last spring and took Sean off
Piracetam. I had planned to take him off of it for a month but put him
back on after one week. His teachers didn't know what I was doing and
all wondered what was wrong with him. He slowed down so much, response
time and how quickly he learned, that they all noticed and were very
concerned.
In our case we did the Metabolic testing before for a baseline. Sean was
over 2 and 20 lbs. so we did it this way. If I had it to do over I would
have ordered the base formula, and after the blood was drawn begin
giving him that, then switching to the custom formula after getting the
results. Between the Lab's processing time, the time we had to wait to
see the Dr. with the results and the time to customize the formual and
ship it we wasted about 6 weeks.
We have recently done it after one year on the vitamins. The levels
that were high and low were normalized. This was a huge relief as he
had Homocystene levels 4 times higher than the 'norm' and if this
continued over time it causes heart disease. The actual explanation of
each component that was tested was a learning experience in itself.
Also, there is a basic understanding that particular vitamins need other
vitamins (amino acids, antioxidents, etc.) to be properly absorbed.
Now I am the first to admit that I have no clue what these things are. I
have read them at one time, and if I were turned loose in a health food
store I would surely irritate the clerk! But, I do know they exsist, I
just have to trust the companies formulating the vitamins to be
including the things needed to 'compliment' the other ingredients.
ANYWAY, My point is, Sean is tested, monitored, and gets every therapy I
can find. I am not blindly following any 'literature' without doing
some of my own checking. I take claims for any product with a grain of
salt, but here the proof is in my child.
--
Sandra, Mom to Sean, 4, DS, Apraxia,
Yesterday is history, tommorrow is a mystery, today is a gift,that is
why they call it the present!
Diagnosis Down Syndrome: A site of hope for parents with a prenatal
diagnosis or a newborn with Down syndrome.
http://home1.gte.net/mcelwee
Sean's Site: The cutest kid on the World Wide Web!
http://home1.gte.net/mcelwee/sean.htm
What to Say To Parents of a Child with a Diagnosis (speech)
http://home1.gte.net/mcelwee/speech.htm
mailto:mce...@gte.net
AmieBell
>Subject: Re: tni stuff
>From: Tamera Ragan <TheR...@AOL.COM>
I have personally seen about a dozen profiles - people who have called for
interpretation or posted for interpretation, information freely shared and not
solicited.
experience which includes seeing some test results from parents who were
looking for more direction.
Tamera,
So that is it, all the posts asking for you to cite some proof instead of just
"talking about" the studies and the best you can do is say that you have seen
about a dozen profiles and on the basis of that! you feel that you can give
advice to parents and tell them these "studies" exist?
There is no need for Mary to spend any time on this subject, she is not the one
who is claiming the studies are there. She is one of many who are simply
saying that since you don't have any "studies" to cite, until you do, stop
referring to "them" as facts!
Rejoice!
Amy
Rejoice!!!
Ami
TyReg21
must... get.... chocolate....
Tamera Ragan
<< So that is it, all the posts asking for you to cite some proof instead of
just
"talking about" the studies and the best you can do is say that you have
seen
about a dozen profiles and on the basis of that! you feel that you can give
advice to parents and tell them these "studies" exist? >>
Yup, that's the extent of the profiles that I have seen, and the point is,
that they do support the literature that is in print concerning oxidative
stress, as antioxidant levels in the reports were low. I never said that a
study on the profiles existed, because they don't. I simply offer the
information of which I am aware so that others can determine if this is
something that merits further investigation until such time as a study is
completed to provide more information, which, as we read yesterday, some are
already rejecting as reliable evidence because of a personal belief system
that it just can't be done. Interesting.
I've thought about asking the other list's parents to share if they had
baselines, but only if this will lead to some kind of constructive dialogue
and not useless accusations and sarcasm, which lend nothing to the
conversation. I know of only oneperson thus far that has requested this and
it was a good question, and one that might yield some info that folks might
find significant.
Don't expect much of an further converation from me in response to sarcasm
and accusations. I really don't have the time for a cat fight and doubt it
would interest anyone anyway.
Tamera
Brett Ames
Tamera Ragan wrote:
>
>
>
> I've thought about asking the other list's parents to share if they had
> baselines, but only if this will lead to some kind of constructive dialogue
> and not useless accusations and sarcasm, which lend nothing to the
> conversation. I know of only oneperson thus far that has requested this and
> it was a good question, and one that might yield some info that folks might
> find significant.
Tamera:
I would be willing to contribute Cristen's initial results if anyone
is interested in collecting them. We will probably not do followup
results for quite a while because we are happy with the results we
see from her taking the Nutrivene now. Since Cristen gets really upset
when blood is drawn, we will probably wait until next year's well check
for the followup profile.
Let us know if you want the original profile and I will get a copy from
our doctor.
Melissa Ames
Mary Wilt
Look: I do not care what you, Tamera Ragan, private citizen, use or do
for your child. I do not care what you have looked at or studied or
found, or who you have talked to to reach your decisions. I do not care
how many personal lab profiles you have seen, nor how many unpublished
studies you have access too, nor how many biochemistry slide shows. You
are free to make your own decisions and to tell others about what you
have done.
I care that TRI is all over the web, the TV, at seminars, in print and
God knows what else stating that their protocol is 1) beneficial 2)
proven and 3) necessary for proper health when NONE OF THIS IS IN ANY
WAY PROVEN. I care that you all continuously, year after year, present
conjecture as fact. Somehow you leaped from a bunch of nice Medline
articles (and some really bad ones) into a full blown treatment, based
on a nice but as yet totally unproven hypothesis: that it is possible to
intervene with the metabolic processes and improve health and cognition
in DS.
Well, even if this is possible (about which I have my own sincere,
private citizen doubts), how will we even know what components of this
vast mix of nutrients are beneficial? NOT which nutrients Swenson thinks
will work together, NOT which nutrients Dixie Lawrence in her vast
readings thinks will work together, NOT which nutrients Rob P thinks go
well together: how are you going to know if you couldn't just drop some
of the mixture, make it easier to use and certainly cheaper? And maybe
safer?
In fact, how do you know anything about NTV is really beneficial except
for the few components that have been studied in DS (zinc, for example)?
If TRI in fact has no data on lab profiles, why do you all continuously
spout off about it? Why is there even a reference to the "usual and
customary" (to paraphrase) profile, if you don't even have one?
This is just one example of TRI games: when asked for data upon which
they have purportedly based some of their protocol, they are forced to
say they do not have such data, they were misunderstood, why are we
picking on them.
TRI has built a million dollar baby based on "data" they supposedly
have. Where is the data?
You don't have data. YOu have theory. Fine. Say so.
mary
Tamera Ragan
<< You don't have data. YOu have theory. Fine. Say so. >>
I already did. I dont' speak for TRI. I speak for Tamera. I do have data
on Daniel. I did not save the data from others that I have seen. Daniel's
nutritional deficiencies were documented via blood profile. We have taken
steps to correct these deficiencies, and are pleased with the results. These
are facts, Mary, not theories. The proof you seek I have seen in my child's
blood work. Does that make my (Tamera's only) position less confusing to
you?
Tamera
Tamera Ragan
<< Let us know if you want the original profile and I will get a copy from
our doctor. >>
Thanks for the offer Melissa, and if enough people who has baselines done
were willing to share the information, I guess be willing to compile it,
again, if it might lead to some fruitful discussion. I think that it would
be important to those who tested within normal limits as well of those who
tested outside of normal limits. And understand would need to be in place
that this is *not* scientific research, just a buncha parents trying to help
one another understand what's going on - or not - with our kids, and sharing
info to help enlighten each other.
For now, I will wait for other responses, as I dont' know if we have much of
a case with 3 children's profiles - Daniel's, Sean's and Melissa's.
Tamera
Deborah Saxton
In a message dated 97-11-10 11:41:17 EST, Mary writes:
<< I care that TRI is all over the web, the TV, at seminars, in print and
God knows what else stating that their protocol is 1) beneficial
Ive been to a recent seminar (Sept 21, in VA Beach) and we were told that TNI
is beneficial to many. Testing was recommended as was supervision by a
qualified physician. I know from whece I speak because I was there...didn't
happen to see you there, Mary.
>>>2)proven
NO ONE AT ANY TIME said this was proven, NOT DR. Swenson, not Dr. Leichtman,
not Dr. Cocchi, not Dr. Jill James, not Dr. Gibson or Dr. Wilson...in other
words NO ONE remotely insinuated what you claim they do ALL the time. Who am
I to believe??? You, who wasn't there, or my own ears and eyes.
>>>and 3) necessary for proper health when NONE OF THIS IS IN ANY
WAY PROVEN.
You twist rumor, Mary... What TRI does state is that GOOD NUTRITION HAS BEEN
PROVEN NECESSARY FOR PROPER HEALTH. This is true, no amount of twisting will
change that fact. It is up to you, the parent, and your health care provider
to come to a decision regarding proper nutrition for your family, just as it
is up to me to do the same for my family.
>>>I care that you all continuously, year after year, present
conjecture as fact. >>
See above, me too
Deb :-)
Mary Wilt
Yes it does, if you are saying that TRI does not have a position on the
"usual and customary" (to paraphrase) profile in DS, I can accept that.
Is there a TNI position or statement that there is a "usual and
customary" (to paraphrase) profile in DS?
mary
Tamera Ragan wrote:
>
> << You don't have data. YOu have theory. Fine. Say so. >>
>
> I already did. I dont' speak for TRI. I speak for Tamera.
<snip>
Susan Thomas
TyReg21 wrote:
> must... get.... chocolate....
Remember to Dip in the Whip!
Susan Thomas
Donna Duffey
In a message dated 97-11-10 18:25:19 EST, you write:
<< You twist rumor, Mary... What TRI does state is that GOOD NUTRITION HAS
BEEN
PROVEN NECESSARY FOR PROPER HEALTH. This is true, no amount of twisting will
change that fact. It is up to you, the parent, and your health care provider
to come to a decision regarding proper nutrition for your family, just as it
is up to me to do the same for my family.
>>
TRI, TNI, MSB+, NTVD, whatever...........Good Nutrition is NOT the problem
folks!!!! I would say that most people, pro or anti TNI would ALL agree that
good nutrition is necessary for proper health. But that's not what we've
been experiencing here on this list and through media coverage for the last
few years. I forget the recent post (I'm not good at saving posts), but I
believe the inference was that the person inquiring help for her child's
handwriting "look" into piracetam. Excuse me, but WHAT does this have to do
with HEALTH!!!!! And are we all suppose to assume that this is just mere
suggestions? Whoever the poster was, just what was the implication of
suggesting piracetam, if not to imply that it helped with handwriting????
I'm sorry but this is NOT twisting words! We all make suggestions when a
poster is asking for ideas (Lord knows I'm one to ask for advice quite
often), but I don't recall anyone else on this list EVER advising someone to
look into a drug for anything other than a health issue. AND BTW--------IMHO
I don't think telling her to ask her physician qualifies as taking the "safe"
route!!!!! IMHO I think it is OUTRIGHT WRONG to suggest to someone that this
drug may help with handwriting. As it has been said OVER and OVER and
OVER.........show us the PROOF!!!!! And if you are tired of hearing that, or
don't feel YOU should be responsible for showing proof, then STOP giving out
said information!!!!!!!!
I saw Day One, I saw Nightline, I saw 48 Hours. ALL the children who were
profiled that were on TNI were being "put on" for their accomplishments
because of TNI!!!!!! That IS Fact!!! Health issues as I recall took a
backseat!! If TRI is against the position certain people purport their
product to be, then they should not have folks out there making inaccurate
claims!!!!!!!!!!!
We're not making things up and seeing things that aren't there!! This
stuff is MOST DEFINITELY being touted as something to make your child
function better cognitively, socially, become more adept physically, and on
the extreme end, pretty much be a cure-all (uh..........wasn't it a TRI board
member who posted not too too long ago that there WAS a cure for DS and why
were all we parents not doing anything about it). And OH YEAH----------the
rest of us are BAD parents because we don't use it!!!!!!! It makes me
SICK!!!!!!! So PLEASE lets not hide behind the Health issue, OK????
Donna
Mary Wilt
Deborah Saxton wrote:
> Ive been to a recent seminar (Sept 21, in VA Beach) and we were told that TNI
> is beneficial to many. Testing was recommended as was supervision by a
> qualified physician. I know from whece I speak because I was there...didn't
> happen to see you there, Mary.
Guess not, Deb!
> NO ONE AT ANY TIME said this was proven, NOT DR. Swenson, not Dr. Leichtman,
> not Dr. Cocchi, not Dr. Jill James, not Dr. Gibson or Dr. Wilson...in other
> words NO ONE remotely insinuated what you claim they do ALL the time.
> Who am
> I to believe??? You, who wasn't there, or my own ears and eyes.
Oh, not me, Deb. Believe Dixie, if you want. Here it is straight from
the horse's mouth. Here are the claims. No matter how carefully the rest
of TRI may phrase their words, <THIS> is the stuff that people believe.
<THIS> is the stuff that gets national and international attention:
From: http://www.ceri.com/dixie.htm
"...I now deeply regret not starting Madison on a metabolic formula in
early infancy.
Those children started very early in life show few developmental delays,
if any,
and even fewer physical signs of Down's syndrome. For instance, one of
our
children was recently highlighted on a news broadcast that aired in
California. She
was chosen, quite frankly, because she is nothing like a child with
Down's
syndrome. I know she has Down's because we placed her for adoption. But
because she started on the metabolic therapy and piracetam in early
infancy,
almost no evidence of the Down's phenotype remains. You would have to
see her
genetic analysis to know she had Down's syndrome...."
<and>
"...Most Down's
children are noticeably microcephalic. Madison, clearly, is not. Neither
are any of
the other kids who start the metabolic therapy early in life..."
<and>
"...Untreated Down's syndrome children have an under-development of the
nasal
bridge and the sinuses, and an under-development of the mandible and
maxilla
[lower and upper jaw] which really interferes with dentition. They have
a flattened
upper lip because of under-development of the underlying bone. Before
treatment,
Madison had all these features. After treatment, her nasal bridge
developed, her
jaw (mandible and maxilla grew to normal, and her crossed teeth
straightened out.
She didn't have to have braces; she simply had jaw development. Her
dentition is
now normal. Before treatment, she was missing three teeth buds. The
dentist said
those teeth would never come in. After treatment, they all did.
Her vision also improved. At 34 months, her eye exam was normal. No
nystagmus,
no strabismus, no nearsightedness. Perfect vision, without glasses.
Glasses had
been prescribed for her when she was younger, but she would never wear
them.
Normalization of her facial features was extremely quick. In about six
months, her
appearance changed from a very flat-faced, weak-eyed, clearly
handicapped
Down's syndrome child to a child who did not look handicapped...."
and from: http://www.ceri.com/downs.htm
"...In fact, this small
group of motivated parents and dedicated practitioners has succeeded in
doing what the authorities
have decreed to be impossible -- the normalization of Down's children's
growth rates and mental
abilities. Down's children treated with this new smart-nutrient and/or
smart-drug treatment program
are now being mainstreamed into public schools on a routine basis. Their
growth rates are
equivalent to those of normal children, and the IQs of those children
started on the program early in
life are comparable to normal children. One 5-year old Down's girl even
has a documented IQ of
140!..."
> You twist rumor, Mary...
Nope, I don't, Deb.
mary
Mary Wilt
In case I have been too vague in my references to the repeated citing of
"diagnostic test results" (to paraphrase) in DS, here are the references
from just one TRI site:
http://members.aol.com/TheRagans/index.html
HOW DOES IT WORK?
Children born with Down syndrome have 'extra' genetic material in their
bodies that causes
imbalances in the way their body utilizes nutrients. It has been shown
through diagnostic testing that
persons with Down syndrome have altered nutritional profiles
<and>
On January 19, 1995, ABC's Day One program aired a 15 minute segment
profiling Dixie Lawrence
Tafoya and the nutritional supplementation protocol she developed as a
therapy for her daughter,
Madison, who has Down syndrome. Termed a Targeted Nutritional
Intervention (TNI), Dixie's
mixture included vitamins, minerals, amino acids, and digestive enzymes,
as well as the "smart-drug"
piracetam, combined in levels appropriate for the individual with Down
syndrome, as indicated by
diagnostic laboratory test results
<and>
TNI is a therapeutic approach utilizing defined nutritional
supplementation (vitamins, minerals, amino
acids, and digestive enzymes present in ratios appropriate for DS
metabolism) specifically formulated
to address the metabolic oddities of the DS individual
<and>
Rather, it is correctly termed
orthomolecular therapy, an approach where, based on individual
tissue/serum evidence of
deficiencies and excesses in nutrients, a customized nutritional
intervention is developed to address
the specific "needs" identified for the test subject(s). A standard
protocol is available which will meet
the common needs of the majority of patients with Down syndrome;
Timothy Casten
he he he Donna,
tell us how you really feel!!!!!!
timbo:D
At 07:24 PM 11/10/97 -0500, Donna Duffey sent a message saying:
>In a message dated 97-11-10 18:25:19 EST, you write:
>
><< You twist rumor, Mary... What TRI does state is that GOOD NUTRITION HAS
>BEEN
> PROVEN NECESSARY FOR PROPER HEALTH. This is true, no amount of twisting=
will
> change that fact. It is up to you, the parent, and your health care=
provider
> to come to a decision regarding proper nutrition for your family, just as=
it
> is up to me to do the same for my family.
>=A0 >>
>
>TRI, TNI, MSB+, NTVD, whatever...........Good Nutrition is NOT the problem
>folks!!!!=A0 I would say that most people, pro or anti TNI would ALL agree=
that
>good nutrition is necessary for proper health.=A0 But that's not what we've
>been experiencing here on this list and through media coverage for the last
>few years.=A0 I forget the recent post (I'm not good at saving posts), but=
I
>believe the inference was that the person inquiring help for her child's
>handwriting "look" into piracetam.=A0 Excuse me, but WHAT does this have to=
do
>with HEALTH!!!!!=A0 And are we all suppose to assume that this is just mere
>suggestions?=A0 Whoever the poster was, just what was the implication of
>suggesting piracetam, if not to imply that it helped with handwriting????
> I'm sorry but this is NOT twisting words!=A0 We all make suggestions when=
a
>poster is asking for ideas (Lord knows I'm one to ask for advice quite
>often), but I don't recall anyone else on this list EVER advising someone=
to
>look into a drug for anything other than a health issue.=A0 AND=
BTW--------IMHO
>I don't think telling her to ask her physician qualifies as taking the=
"safe"
>route!!!!!=A0 IMHO I think it is OUTRIGHT WRONG to suggest to someone that=
this
>drug may help with handwriting.=A0 As it has been said OVER and OVER and
>OVER.........show us the PROOF!!!!!=A0 And if you are tired of hearing=
that, or
>don't feel YOU should be responsible for showing proof, then STOP giving=
out
>said information!!!!!!!!
>=A0 I saw Day One, I saw Nightline, I saw 48 Hours.=A0 ALL the children who=
were
>profiled that were on TNI were being "put on" for their accomplishments
>because of TNI!!!!!!=A0 That IS Fact!!!=A0 Health issues as I recall took a
>backseat!!=A0 If TRI is against the position certain people purport their
>product to be, then they should not have folks out there making inaccurate
>claims!!!!!!!!!!!
>=A0 We're not making things up and seeing things that aren't there!!=A0=
This
>stuff is MOST DEFINITELY being touted as something to make your child
>function better cognitively, socially, become more adept physically, and on
>the extreme end, pretty much be a cure-all (uh..........wasn't it a TRI=
board
>member who posted not too too long ago that there WAS a cure for DS and why
>were all we parents not doing anything about it).=A0 And OH=
YEAH----------the
>rest of us are BAD parents because we don't use it!!!!!!!=A0 It makes me
>SICK!!!!!!!=A0 So PLEASE lets not hide behind the Health issue, OK????
>Donna=20
RICK MCELWEE
Mary Wilt wrote:
>
> TRI has built a million dollar baby based on "data" they supposedly
> have. Where is the data?
>
Where's the million dollars?
i think the fundraising issue was what started this current fight in the
first place!
Mary Wilt
OK, "million dollar baby" is a euphamism for a big successful venture,
as in the old Depression era song: "I found a million dollar baby at the
five and ten cent store" (aren't you glad you can't hear me singing!)
I just meant they built a successful fundraising effort on the back of
this data; data which they cannot produce. Sorry for my poor choice of
words.
mary
Graeme
Hello Fellow Parents
While reading all these facts, figures, fictional, WHATEVER you desire
to call the TNI research and the results, I came up with a great idea.
I think if TNI is so good, I ought to be on it myself, so I can keep up
with this list.
If it helps those who are deficient in (whatever, all beyond me) then if
I have extra of those things it will not hurt.... infact I'll have heaps
of time do doing a lot more than I am doing.
Seriously.... would this TNI help the average person like me?
Have any parents tested themselves with it first????
Graeme
Tamera Ragan
TRI, I think, has finished their official position statemnt concerning the
use of supplements and piracetam. I'll have to ask Dr. Leichtman when he
returns if it is ready for release yet. I hope it is, as it will be the
statement of what "TRI", as a whole, has to say about the whole enchilada,
and the one that is apporopriate to question as to "where do you come up with
that?".
I don't have my copy of the draft handy at the moment, but if memory serves
me well, the refence is to metabolic abnormalities caused by the
overexpression of gene products and doesn't get specifically detailed, so
this might be a disappointment to those who hunger and thirst for specifics.
The only alternative I see is at the moment is for folks to share their
baselines and the compile what is offered. There's only 3 volunteers for
that at the moment...likely not a large enough group to deduce anything?
Dunno.
Tamera
----------------------
Kelly L. Himes
In a message dated 97-11-12 12:48:08 EST, you write:
<< Seriously.... would this TNI help the average person like me?
Have any parents tested themselves with it first????
Graeme >>
My husband took the peracitam for a while and didn't have any side affects.
Its not unusual for my husband and to take a little of our kids meds. to
just see how they taste and affect us. We do take into consideration that we
are adults and they are children.
kelly
Mary Wilt
WARNING-----TNI THREAD, DO NOT READ IF THIS UPSETS YOU
No. Here is the point. I will try to be concise. I do <NOT> mean to be
irritating, but apparently you are missing my point so I must not have
made it too well.
----->Nutrivene is NOT based on a collection of lab profiles done on
individuals with DS. Is it?
----->If you say it <IS> based on a collection of lab profiles, who has
the data?
mary
Tamera Ragan wrote:
> So, the point is, the number
> of NutriChem clients at the time that the Day One program aired is not
> significant in determining how many profiles had been done prior to that
> time.
Mary Wilt
WARNING!!! TNI THREAD, DELETE NOW IF THIS MAKES YOU UPSET
But you see, the point is that for YEARS you have been selling TNI to
people based on this supposed unusual lab profile for people with DS. It
isn't that I hunger and thirst for specifics just to be a thorn in your
side, Tamera. It's that I doubt there were any specifics to begin with.
Were there? Did TRI, in fact, state that the formula was based on a
usual and customary (to paraphrase) lab profile for people with DS,
without actually bothering to determine if there was, in fact, such a
thing?
mary
Deborah Saxton
Thank you, Mary :-)
Deb :-)
Timothy Casten
At 06:55 PM 11/11/97 -0500, Donna Duffey wrote this to All:
>In a message dated 97-11-09 21:47:52 EST, you write:
> And shockingly Tamera, I'm a GREAT MOM!!!!
>Donna
Kinda Cute too!
hehehe,
timbo :D
Cindy Casten
At 05:36 AM 11/11/97 GMT, you wrote:
>must.... get..... pint of Ben & Jerry's....
>
Now Pam...Cherry Garcia...isn't that your favorite?? LOL.
Sending some Virtual B&J's your way...
Cindy
Tamera Ragan
<< Seriously.... would this TNI help the average person like me?
Have any parents tested themselves with it first???? >>
Hey Gramae - Don't take a TNI nutritional product unless you have an extra
21st chromosome. 'Taint balanced for those folks who are chromosomally
challenged and only have 46! ;) However, if you are serious, it might
interest you to know that some college students use piracetam when cramming
for exams and I even met a well respected physician - with a waiting list 6
months long - who takes it. I took it, and liken it to drinking lotsa coffee
minus the jitters.
Tamera
Tamera Ragan
Hiya Donna:
Lemme take care of your last comment first. Did I say that you were not a
good Mom? Nope, didn't even imply it. I hereby resign my position as
designated whipping boy for comments not made by me. If you are frustated
with someone else, then kindly direct that frustration to them.
Further:
<< We are not the ones pedalling a product!!
I am not peddling any product. I make no commission nor royalty. I bear the
burden of my information seeking and sharing. I do this to freely offer
folks what I have found to be reliable. Concerning the post that you
responded to that I wrote asking Mary to do her own research, this is
because, (I will state again), I have had a baseline blood test done on
Daniel before supplementing him. The data reflected in Daniel's blood
profile coincided with the material that was origianlly sent to me which
indicated that kids with DS were deficient in certain nutrients - particulary
antioxidant nutrients. I have no need to call a lab to justify my comments.
I have Daniel.
<< We read posts about how Fabulous NTVD or MSB+ is and how it cures DS (yes
that was said once and no it can't be taken back.........sorry) or could
help with handwriting (certainly implied) and we see on National TV how
children who take this potion are so much brighter and better
(um.........KiKi I believe learned to
jump rope practically overnight once starting piracetam........choke). But
you say it is we, the ones who question, that should commit a substantial
share of our family resources, as you have, to find answers.>>
The point is that I am already maxed out in this area. If there were a way
for me to committ more I would. For me to do what is asked, it would would
be Daniel, Bryan and my hubby that paid the price, and I won't do commit to
more. Again, I have never made any of these comments and in fact have done
my best to caution parents that TNI is not a cure for DS. In my opinion, it
is just one of the many things that a parent can investigate to help their
child. I also recommend that parents check out NACD program, early
intervention programs, refer them to the best PT's and ST's that I know - you
name it. I use the nutritional protocol as a the platform for all the other
things that we do with Daniel, to keep him as healthy as possible. I have
run out of it before and he was back on antibiotics within a few weeks. When
he is sick, he doesn't go to school, he doesn't interact with me or his
therapists...he feels like crap, and frankly he looks like crap when he's ill
too - but then again, so do I.
<< We have our own families to tend to and priorities as well, Tamera. And
I'm sorry if we offend you by our questions, but I feel that I would do my
daughter (Madison, 4 in 3 weeks and DS) an amazing disservice if I didn't
question. And I've
read and gotten abstracts (and paid for them BTW as well as my parent fee in
the beginning) and been there from the VERY beginning. I chose a different
route for Maddie and feel quite comfortable with that. And shockingly
Tamera, I'm a GREAT MOM!!!! >>
I am not offended by questions that are geared toward further understanding.
I answer from the basis that I would have *thought* that by now, folks here
know that TNI is not a cure. In case you are unclear what my position on
this matter is, TNI is not a cure for DS. I've got 2 buddies here locvally
with DS kids an neither use TNI. One is okay with that and the other gets
defensive and *always* is asking more questions and just gets furtherly
defensive when I answer. One would likely tell you that I haev *never
implied* that she was a bad mother, and the other mgiht....I dunno. I
finally had to tell her that the only way that she would ever be confortable
with her decision was to spend her own time searching for info and to quit
relying on me as her definitive source.
It seems that you have already done that and I say good for you! I would
like to see the abstracts that you have on file if they are handy. All the
ones that I collected are already posted on the internet at other sites.
Appreciate it.
Tamera
Graeme
Hi Mary
Oh boy....I really hate the way TNI etc is promoted. It really bugs me.
Whatever people have promoted it in Australia, has turned me off.
My Rebecca is doing great guns at kindy without it. I tmay help some
children in some ways but what you have revealed (THANK YOU) is surely
just a big sell. If all is true...then everyone would have to put their
children on it.
My concern is for those who will just do because they feel guilty and
really are uniformed.
Thanks again for all the things you have discovered (that I have not).
Graeme
Wildwards
> Now, if you want to see these results in a form acceptable to you, then
>*you*
> call the labs and ask for it and do the work.
I don't think Mary wants anyone to do a new study, I believe what Mary
originally asked for was the information, original profiles done, in whatever
form you have, that became the basis for the Nutrivene formula. The
thousands, hundreds, or one profile that determined what went into the
formula. The profiles that are used to chararcterize the "metabolic
differences" TRI says occurs in people with DS. If your child has lab work
done in order to provide a profile needed to "customize" their own Nutrivene
dose, does someone maintain a data base at TRI, checking to make sure the DS
profile has not changed as more information rolls in? Is the profile of
people with DS, used to make the formula, still the same with the blood work
data from years ago, as now with all the new children that are on it? Where
are the original, first, beginning statistics that were the basis of the
formula? Is that information available to show the deficits that were the
determination for what went into the formula?
Cheryl in VA
Mary Wilt
YES!! Or was there, in fact, EVER any such profile as has been stated?
EVER a collection of data to determine this "DS profile"?
Thanks for translating for me, Cheryl!
Wildwards wrote:
> I don't think Mary wants anyone to do a new study, I believe what Mary
> originally asked for was the information, original profiles done, in whatever
> form you have, that became the basis for the Nutrivene formula. The
> thousands, hundreds, or one profile that determined what went into the
> formula. The profiles that are used to chararcterize the "metabolic
> differences" TRI says occurs in people with DS.
remy kinchen
Dear Jan,
Hi! I don't want to make you more upset than you probably already are
but why don't you just use your little delete button? I understand that
it has become tiring but I am actually learning alot from everyone's
comments! I wish that we could ALL discuss the TNI stuff better but I'm
learning a whole lot from that, too. I started to use my delete button a
few times but I just couldn't bring myself to do it, and I'm glad I
didn't because I felt & thought quite different about the person writing
the post afterwards.
BTW, my daughter, Dixi Kay, is celebrating her 1 yr birthday today!!!!!
Debbie, proud mother to Dixi & her 2 brothers &
3 sisters.
Tamera Ragan
<< I'm sure that the abstracts that I have are the same ones you have, as I
got them from Dixie. They weren't enough for me or my ped or the various
other docs he shared them with at Children's Hospital in Philly.
As I've stated in previous posts, I have no problem with folks who use
TNI------Heck, it's their business. But I do have a problem with agents
from
TRI who call those of us who opt not to use TNI abusive parents or in some
way neglectful. No, those words did not come from you, but they did come
from the woman who runs TRI and you do promote this product in the extent
that you share the benefits that you believe your child reaps on line.
As many others have said in the past, if TRI is not in support of Dixie's
comments, then why is she representing them? >>
Two different issues about comments - scientific side and emotional side.
TRI is in agreement on the scientific side.
I think the fairest statement as a whole about TRI's feelings on Dixie's
comments (if we have to sterotype TRI) is that TRI has determined that there
is valid concern about the metabolic cycles in DS, and that they indeed
differ from the "chromosmally deficient crowd" - those with only 46 chromies
;) On that, you indeed will get a concensus. You will also find concensus
in that Nutrivene-D is the best way that they know, right now, to address
that extra chromie from a nutritional standpoint. Anything past that, and
you will get differing opinions. I can tell you this though, I have never
stated or implied that a parent who doesn't use TNI is a bad parent, child
abuser, etc. I simply look at these folks at those who need more info - some
of which we don't have at the moment....like a double blind study - and this,
I am referring to Doctors, and that is what my first ped wanted to see before
he changed his opinion from "sales literature" to "scientific literature."
Dixie's comments beyond the scientific side of what TRI is to accomplish
should be attributed to Dixie-the-emotional-mom. I don't throw stones
because I have screwed up too before. I will tell you this though: TRI has
a sincere desire and committment to kick DS in the hiney, if it is possible,
and for that, I am grateful, I wish them luck, and they have my support. I
will not let controversial comments made by other TRI members steer me from
the end goal of helping my son, and in the end, helping to find answers for
all kids with DS. Who knows what those answers will be? No one. That's why
the work needs to continue.
I've been shipping the abstracts that I have off to the Riverbend DS
folks...so, if you've been there, seen that, then you have likely most of
what I have. I've just run across some more that I saved with intentions of
getting them posted to my site, but heck, I don't care where they are so long
as they're out there and accessible.
I understand that physicians will all have various reactions to the
literature that's already in print...none of which says that Nutrivene-D is
efficacous or safe (another reason to get the work done). My personal
experience has been limited to 2 peds that have served Daniel...one deemed
the material was "sales literature" (interesting comment for abstracts I
think), and the otherped, when I walked into the office to interview her
concerning her knowledge, stated that she thought there were 3 main areas of
concern caused by genetic overexpression..SAM, SOD and CBS...this before I
ever opened my mouth. I nearly fell out of my chair! So, results from
sharing info from Doc to Doc will vary. I certainly understand that!
Tamera
EGreene510
In article <97111015082...@mrin84.mail.aol.com>, Tamera Ragan
<TheR...@AOL.COM> writes:
>For now, I will wait for other responses, as I dont' know if we have much of
>a case with 3 children's profiles - Daniel's, Sean's and Melissa's.
>
>
You can have Sarah's baseline
Betsy