New member with NuTriVene questions

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Hi,

I'm from Ohio too --southwest corner. My Evan is 11 and I've had him

on Nutrivene most of his life. The times he's been off he doesn't

look as good and gets more colds, croups, etc. I can really tell it

helps his immune system. You know, Nutrivene got started when Dixie

Lawrence started trying to help her adopted daughter with DS,

Madison. She took blood tests to see what she was needing and

supplimented and kept taking more blood tests and supplimenting more

and more till finally Nutrivene was invented and after years of

asking those who took it to get bloodtests, they finally decided most

with DS had similar needs and they no longer say extensive bloodtests

are needed. They do suggest you get a few things tested periodically

but these are needed whether you do Nutrivene or not. The main point

is that Nutrivene is made just for Down Syndrome --and it is well

known they have certain deficiencies and too much of other things

--The other vitamins out there are made for typical people without DS

and therefore will not help our kids nearly as much and some things

in there could even add to their problems --like adding iron or

things that our kids have too much of due to that extra chromosome.

Here's some things I have posted in the past on this subject:

Evan was half dead when we started TNI at 5 MONTHS old. He had had

two major surgeries (surgery on his back at 1 month old and open

heart surgery for 3 holes at 5 months old) and several minor

surgeries, pneumonia, several bouts of congestive heart failure,

staph infection, numerous viruses, bronchiolitis, a back infection,

etc. He spent three of his first six months in the hospital, most all

in ICU or its step-down unit. We started TNI and he gradually over

the next couple years became the healthiest person in our house. I

experimented several times and took him off for several weeks at a

time and he always went downhill, looked sad, pale and withdrawn,

skin got dry, dark circles under the eyes, etc. till my husband said,

" No more experimenting. Keep him on TNI as long as we can afford it. "

He's still the healthiest one in the house at almost 6 years old and

all his docs, therapists, nurses, etc. are visibly amazed every time

they see him - he's described in all their notes as being alert,

eager to experience the world, and happy and has surpassed all of our

expectations so far. Many of the professionals have read his record

before seeing him and then can't believe he's the same guy - I've had

them tell me (different ones different times) they were expecting a

little limp rag or something but let me tell you Evan is nothing like

that! His neurosurgeon called him " inquisitive " . His PT calls him

" amazing " !

________________

The www.einstein.com website is a good one to look at for information

on different therapies, etc. as well as the Riverbend site at:

http://www.altonweb.com/cs/downsyndrome/ Those 2 sites will keep you

busy for awhile reading. Kathy R posted these Pro tni sites: The

history of tni: http://mypage.iusb.edu/~jratkiew/history_of_tni.html

.. http://www.worldmag.com/world/issue/01-16-99/national_2.asp .

Articles about recent research http://www.dstni.net . Articles by

Wm.Fowkes: Antioxidant Intervention in DS -

http://www.ceri.com/downs2.htm Nutritional Intervention in DS -

http://www.ceri.com/downs3.htm

http://www.mercola.com/2000/jul/23/downs.htm

http://www.altonweb.com/cs/downsyndrome/index.htm?page=tniintro.htm

Here's some notes I took at the TNI convention several years ago:

Jim Croom, PhD Facn (Professor of Nutrition) at the DS convention in

NO (New Orleans) said that Turkel (pioneer in DS nutritional

suppliments) was not crazy. He said Turkel had double-blinded study

underway in 1963, partly NIH funded which was terminated early. Can't

remember what all he said here but Linus ing later commented on

all the abuse Turkel had received from US FDA. He then said the

Japanese picked up on this use of nutritional suppliments in DS and

they had 60 hospitals involved in a 60's study and that rates of

development increased, speaking ability, motor skills, etc. all

improved. Said not all kids with DS responded so well to the

suppliments but most did.

Here's the part I wanted to reach: He said the treatment must be for

long years; otherwise the effects will be minimized. He said there

were all ages in the study but treatment in the infant years was

especially remarkable in their progress. He also mentioned the study

was in " les Paediatric " ? (not sure of spelling) and said that

Caroline of INI or Swenson would send a copy of this paper if

you requested it.

Also Matthias J. Gelb, Germany, father of 2 including Lucas with DS

(www.kinderarzt-bretten.de) has done studies 14 years (I think) with

more than 400 kids. He said there was increase of body mass index

(BMI) in older people with DS not on Nutrivene. He listed top causes

of death in DS: Ischaemic heart disease, cerebrovascular disease,

dementia & Alzheimer's, Infectious Disease, Cancer. He stressed we

should focus on olive oil and rape seed oil and NO trans fatty acids.

He said with only modified diet you can reduce body mass and that a

modified diet reduces the risk factors. He then said there was no

effect of TNI on the BMI! But he said TNI increased the percentile

ranking on the growth chart and reduces infectious diseases making

them much healthier. He also said there was no human being with DS

who can't do sports. He said physical exercise improves

cardio-vascular system, stimulates immune system, improves

coordination, reduces BMI, stimulates hormonal system and is inducing

the fat-reducing enzyme. He recommended 30 minutes daily of jogging,

walking, etc. 10-20 Km a day. He recommended MTS --M = Modified diet

with energy input control. T = TNI. And S = Sports - Stamina Training

Daily.

Nagwa Meguid, from Egypt spoke at NO also and told of beginning 10

years ago on intervention program for DS there. She said the kids

benefitted in developmental and fine motor skills if on antioxidants

and there was a marked increase in height and weight and large

decreases in infections which led to regular attendance in training.

Her final conclusion was that the therapeutic effect of nutritional

interventions has been shown by their studies.

T. Capone, MD, spoke and told of mitochondrial dysfunction in

DS. He also spoke of precocious age related health concerns in DS,

autoimmunity, immune dysfunction, SN hearing loss, osteoporosis, skin

and hair problems, periodontal disease, cataracts*, Alzheimer's

pathology*, amyloidosis, neuronal impairment, seizures, dementia. And

he said those marked with * that oxidative damage plays role. He told

of the evidence for oxidative damage in DS, giving many examples with

studies mentioned. Then he talked of the vulnerable brain in DS--that

it: Has high metabolic demands using 20% of oxygen in body, is high

in unsaturated fats, has large iron stores, has low antioxidant

capacity, and a non-dividing neuronal population.

The implications of all the above are: .

Impaired chemical signaling between neurons *receptor mediated) and

within neurons (intracellular signalling) .

Impaired information processing: learning, memory, emotions,

sensations?

He gave these 4 supplements as being possible therapeutics for

mitochondrial energy dysfunction: Coenzyme Q10, lipoic acid,

carnitine, nicotinamide.

One of these speakers in the question and answer period said that to

change the nutrition and move the children was enough to make a large

difference. Said there was no chance for too many calories of you

modify the diet right --Said you have to eat many apples to equal 1

hamburger. Dr. Croom said there would be no way for a person with DS

to eat enough to equal the vitamins needed because you are trying to

fix metabolic problems.

Didn't mean to type all this now although I've kinda wanted to but

this part by Steve Fowkes was highly interesting to me. He stated

that people become younger with tennis or exercise. (Guess what sport

I've taken up? Actually I had before the conference but I REALLY have

since.) He told of studies on this and how exercise staves off

Alzheimer's and dementia. He also stated there was a dramatic rise in

nonverbal intelligence with suppliments --there is brain development

(Is this what I've seen with Evan?) He said in typical kids,

suppliments increases IQ an average of 3 or 4%. It wasn't universal

though --most, not all. He said that every dollar spent on

suppliments returns 100 to 1000 fold on kids --DS or not.

He said violence dropped in correctional institutions on suppliments.

He mentioned one study where the staff spent their own money on

vitamins when the study ran out. He said some design their studies to

fail. Gave example of 2 studies funded by the sugar industry that

showed no good to kids on suppliments. He said some kids IQ does not

increase but some had 10 point increase in IQ after suppliments. He

pointed out that the average difference in IQ between the average doc

and the regular population is 10 points. So ----some suppliments make

some kids have ability of IQ of docs. Impressive talk, huh? He said

1/3 of our kids are so nutritionally challenged they cannot learn.

Those were some of the highlights on nutritional supplements at the

conference --I left out Dr. L. I

figured everyone on here already knows what he thinks of TNI. (LOL)

This was to list other professionals and their opinions and study

results. 4-4-04

Here's a list of some of the biochemical differences in our children

according to Dr. L's slide show. This shows me we have some problems

in our kids that might be at least " helped " with suppliments:

Biochemical studies to date demonstrate:

Unusual amino acid balances

DNA pathways may be abnormal

Antioxidant pathways are abnormal

Overaction of superoxide dismutase (SOD)

Depletion of Vitamins A, E, and C

Depletion of zinc, and selenium

Intestinal malabsorption may affect levels of Vitamins A, E, C, folic

acid and calcium

Disruption of folate pathways

Overaction of cystathionine beta synthetase (CBS)

Homocysteine, an amino acid, is deficient

SAM pathway necessary for methionine recycling, DNA methylation,

biomethylation and polyamines, is decreased

Purine synthesis (necessary for DNA production) is increased, as is

uric acid production

Possible overproduction of superoxide

Neurotransmitter function is abnormal in DS

Decreased acetylcholine, dopamine, and serotonin receptors in the

brain.

Hypothyroidism occurs 25 times more frequently

Lipid handling is abnormal

Apolipoproteins, associated with Alzheimer Disease, are abnormal

Essential fatty acids are low

Collagen is abnormal

Evidence that DS is a Progressive Disease

Alzheimer changes seen on MRI & autopsies (not always apparent on

clinical evaluation) Brain size is normal at birth but decreases over

6 months - 10 years 25% decline in brain volume compared to peers

Increasing clinical losses over time in adults

Alzheimer Disease

Apoptosis or programmed cell death is increased in fetal DS neurons

in culture but are normalized with antioxidants (Busciglio & Yankner,

Nature 378: 776-779 [1995]).

Fits World Health Organization criteria for disease

I keep posting that list because to me it just tells why our kids

need TNI. The main intent of TNI as I understand it is to try to

normalize some of the things listed above that are off because of the

extra chromosome.

_____________

Two studies on TNI:

The full text English translation of Dr. Matthias J. Gelb's article,

" Targeted Nutritional Intervention (TNI) for Children with Down

Syndrome " Padiatrische Praxis 59: 703-708 (2001) has been posted at:

http://www.altonweb.com/cs/downsyndrome/gelb.html And from a post of

Dixie's: Below you will find the Egyptian and German study abstracts

(English translations). Please note that in both studies, cognition

as well as health, growth and over-all development was improved in

the TNI group. You can compare those with Dr. Leichtman's findings at

http://lleichtman.org/tni.shtml Keep in mind 1) Studies in Egypt are

subject to even more rigorous peer review than are studies in this

country (if you can imagine it); the Egyptian researchers had nothing

to gain from this study - they were not trying to prove a point. Gelb

did his study to determine whether or TNI was beneficial with no

preconceived notions. Dr. Leichtman's case control study is going on

ten years now. None of these teams knew each other. All did blood

tests, and all found improvements in areas to the same degree. Good

science is science that can be duplicated. Here, the findings were

duplicated not once but twice (Dr. Leichtman's findngs, that is).

Early Intervention in Down syndrome: The effect of antioxidants.

(conducted with Nutrivene) Author: N.A. Meguid, et al. Human Genetics

Department, National Research Centre, Tahir Sir, Dohki, Cairo, Egypt.

(snipped for space --see above website for whole thing) . . . " The

most striking finding was the marked improvement in the health and

growth of the group of children with DS attending the intervention

programme in conjunction with antioxidant treatments. There was a

significant decrease in the incidence of all infections, and upper

respiratory and ear infections in particular. The authors also

noticed a significant improvement in cognitive and gross motor

development in comparison to the other groups. This study emphasizes

the therapeutic effect of antioxidant nutritional intervention on the

quality of life of people with DS. Targeted Nutritional Intervention

(TNI) in children with Down's syndrome Gelb, J.J. padiat. prax 59,

703-708 (2001) Hans Marseille Verlag GmbH Muchen Quote from English

article by Dr. Gelb written in association with journal article:

" Anyone can discuss the pros and cons of whether or not down syndrome

should be seen as a disease. It6 is however, a fact that the

additional chromosome 21 does not reside inactively in the cells. It

can be shown that this chromosome participates in metabolism and that

proportionally 40 to 50% more chromosome 21 gene products are present

in the cells. Two of these substances are currently in the center of

interest: zinc/copper-superoxide dismutase (SOD) and

cystathionine-beta-synthase. Various studies have shown that people

with down syndrome have an altered metabolism situation. It was thus,

for instance, already demonstrated by LeJeune that there are changes

in the carbohydrate and purine metabolisms. An interesting problem

seems to be connected with the appearance and neutralisation of free

radicals and in this instance SOD plays a central role. Free radicals

cause damage in the cell membrane and the organelles and can lead to

pre-programmed cell death. In 1995 Buscioglio and Yanker succeeded in

proving that fetal neurons grow differently in healthy embryos and

down syndrome embryos. Supplementation of antioxydants that bind free

radicals improved the generation of down syndrome neurons....After

careful consideration we decided in favor of products by the firm

International Nutrition Inc, Owing Mills. Additionally, we administer

in almost all cases Piracetam. " English Summary of basis for study:

Summary: The metabolic situation of individuals with Down syndrome

shows quite differences compared with persons with numeric normal

chromosomes. The changes can cause mutiple problems e.g. immune

system problems, a slow down of growth, defects in the metabolism of

fat and others. TNI (targeted nutritional intervention) focuses on

changing this situation specifically. We have been applying TNI since

1996 and are presently treating approximately 100 children with TNI.

In the following we will give reports of 39 patients who are

participating in the TNI-project for more than 12 months (average 21

months, 12-48 months). One can perceive the following issues with

these children; decrease of cases of infection, increase of growth

(jump-up in percentiles), improvement and normalization of diverse

laboratory parameters. Parents and therapists report about clear

improvements of behaviour, cooperation and development. As our

perceptions are neither statistically important results nor are they

a double blind study, our results should be assessed critically

especially the subjective evaluation by the parents and therapists.

It seems necessary to initiate such a study especially because

according to a survey in our office among children who came for

consultation about 15% of these are " secretly " (i.e. without

knowledge of the treating doctor) substituted in some way by their

parents. " English translation of article summary after completion of

the study: " Our own interim results looked as follows: 30 children

aged four months to thirteen years. Observation period from three

months to 1.5 years. 1. Reduction of infection related doctor visits

about 40% 2. Reduction of infections necessitating antibiotics about

30% Summary Although we do not personally have any long-term results

as yet (more than 1.5 years), it seems that TNI has an extremely

positive effect on the children. The rate of infection shrinks.

Improvements in neurological development can be demonstrated. Whether

these neurodevelopmental improvements are causally attributable to

TNI or whether they derive, for instance, from the fact that children

are sick less frequently must, for the time being, remain

undetermined. We are of the opinion that TNI is a sensible,

responsible and financially feasible way to provide simple and

effective help for people with down syndrome. "

As far as financially, there are some who have managed to get

insurance or extra funding to pay for this but I think most of us pay

out of pocket. I think you can claim it on your taxes under medical,

especially if you can get a doctor to say it's needed.

Priscilla K

>>>>>>>>>>> Posted by: " "

ninepreciousgiftsfromgod@...

Hi everyone! New member here! My name is ,

and I am mom to 9

children. (18 mos.) has DS and a CHD known as Ebstein's

Anomaly with a small ASD and moderate VSD. For now, his heart is

doing quite well, so surgery is on hold indefinitely. I've several

questions that are just DS issues, so that is why I wanted to join

this group. And since there has just been discussion on nutritional

supplements, that is as good a place as any to start. I just got

info that I sent for about NuTriVene-D, and while I read the

testimonies of parents right away, I admit I haven't taken the time

to thoroughly read all the " technical " stuff. What I am already

doing is making 's cereal with 3 Tbs. Mangosteen juice as part

of the liquid and adding 1 tsp. Shaklee Vita Lea to his cereal, as

well. Then, when I feed him dinner, I mix 1/2 tsp. of liquid vitamin

C (which would be 150 mg) to either his fruit or yogurt. He has had

a very good winter, health wise. Last summer, he was sick for 3+

weeks twice with bronchiolitis and the ped thought he might have

asthma. At that time, he was still breastfeeding exclusively,

because he had oral defensive/sensitivity issues and would not

swallow puree food, so I could not get any suppliments in him. So,

it appears that the Mangosteen juice and the vitamin C are

effectively reducing oxidative stress and improving his immune

system function. I guess I want to know how does NuTriVene-D knock a

product such as Shaklee Vita Lea " out of the ring " ? And do any of

you have testimonies of ways that you are sure that NuTriVene-D has

helped your child? My husband is rather skeptical as to whether

vitamins and supplements are all that beneficial, so I am going to

need some strong convincing testimonies. And then, are you able to

get reimbursment from insurance or financial support from

organizations or agencies? I live in the state of Ohio.

Blessings,

>>>>>>>>>>>>>>>>>>

Priscilla Kendrick, married 29 years to Darrel and parents of 9 kids including

Evan, 10, born with Down Syndrome and Spina Bifida

" My strength is made perfect in weakness. "

" My grace is sufficient. " II Corinthians 12:9 KJV

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