Re: Holy ^%$%& Vitamin E - update

[Guest guest]

Thanks - DS - Chase, 3 years old, has been on the Vit E drops for about 2

weeks now with no negative side affects that I can tell. He takes 1000 iu a day

not a 100, and like you said - I consulted our DAN before starting anything. He

would be the first to say NO dont try that or ok lets start slow - he thought

given Chases height and weight 1000iu was safe to take.

Honestly the talking is really coming together - for example for the longest

time he would say " come " and grab my hand when he wanted juice. Then after the

aednoids were out, second set of tubes went in this winter and I switched from

Omega 3 to PRO EFA - we got a lot more words " Come " turned into " Come Juice " for

one example.

Then after starting the Vit E - he now says to me " Come Juice Please " then we

get to the frig he says " Juice Yellow " I say its orange juice honey - and he

says " yellow orange juice please "

Never ever before would he expand on words like this - from the Vit E??? - seems

so, but it could be the combo with the PRO EFA, the sensory diet that we do

EVERYDAY - the fact that we run him everyday like a puppy, and those weekly

Chiropractor visits. Who Knows??? His sensory issues are very organized lately

too.

I am very thankful for your book and this site - but Yes I agree we need to

check everything out with our Doctors and always quesiton things if it just

doesn't seem right. I even called my pediatrican to get a second opinion on the

Vit E - and you know what he said???? " oh never heard of any supplement helping

speech! " God I wish these doctors would try to question more things!

Thanks, Jill

>

> I don't think it's a debate or problem- it's just that new people don't know

what this group has been through for the past few years. I mean this group has

been around for over a decade but vitamin e has only been a hot topic really for

a few years. Prior to that vitamin E came up because some parents didn't want

soy -some complained (!) when Nordic raised the vitamin E in each ProEFA

capsule from 8 IUs to 15 IUs because of the research that showed supplementation

with fish oil over time can create a vitamin E deficiency.

>

> could be correct about the seizures being from the vitamin K but it's

just her opinion and she could also be wrong. As far as any professional I've

spoken to (and of course I called many of the researchers behind the studies)

there are so many unknowns. Besides -as far as I know Tanner never had a

seizure -but he had many other side effects including the headaches and most

noticeable to all -severe and dramatic regressions in speech back to groping

where he opened his mouth and nothing at all came out. It was a nightmare.

>

> On smaller amounts of vitamin E at the time many of us too were very excited

about surges we saw in sensory and in speech -but that again could have to do

with the fact that this group in one where we put our children on fish oils and

it is now known that mere supplementation of fish oils over a period of time can

create a deficiency.

>

> Does that mean that we need high dosages? Does that mean we need to

supplement for a few days, weeks, months and then stop? Nobody knows. All I'm

trying to point out is that it's an unknown road and in the history of this

group one that we still have not reached the bottom of yet. Until Evoni is

resolved there are a few of us that just want to point out to be aware that

there many be risks that some medical doctors don't know about- which is why I

posted the medical reports I did. I tried to tell everyone that this group was

using a 1/1 ratio of alpha to gamma for the most part- and most only were using

200/200 capsules because if you check the archives that was what I was using and

posted about.

>

>

> I'm sure means well -but like the experts she would be limited by the

research out there- and in regards to children with mega dosages of vitamin E

-even vitamin E alone -there is little. I also can tell you that knowing what I

do now about vitamin E after reading the reports I no longer feel comfortable

with any dosage that would in any way be considered high. I'm sure what you are

using -100 IUs is not considered high -but you need to keep in mind there is

vitamin E in the fish oil and any other foods or vitamins to keep track of fat

soluble vitamins. I can tell you that without vitamin K my son Tanner regressed

when I tried him on higher dosages of alpha over the gamma. Check the archives

as it's all there. And I tried that three times. Tanner needed a 1/1 ratio.

There were exceptions to the rule where perhaps fish oils didn't work for them

and vitamin E did. Three kids like that? Four? Out of thousands? To me based

on what I saw the best thing would be to start with the basics -the fish

oil...and go from there slowly. But at least all of you get to know there could

be side effects and will know what to look for. When my son Tanner started

vomiting and had severe diarrhea- I just thought it was something he ate. When

he complained of headaches I couldn't imagine why. When he begged me for an

aspirin I didn't realize that could be dangerous based on everything else. When

he would then sleep for hours and hours -through dinner...I and nobody else

knows what happened to my son Tanner. All I know is that I had to re teach him

even basics sounds that he had known since 3 years old- even the sound " b " You

see...I didn't take the regression seriously because if you stop the fish oils

or use the wrong formula most of our children regress. No biggie -you put them

back on the right formula of fish oils and poof they are back to normal.

>

> That's what we thought would happen -including my son Tanner. Tanner was a

HUGE fan of vitamin E too -and he wanted to keep trying it. It broke his little

heart as well. Don't believe everything you read here or anywhere. It's your

child...I typically never let my guard down to just take advice from anyone

-even a professional I trust -without question. I don't know why I did with

this one...but like most I thought -it's vitamin E -it's healthy.

>

> It probably still is- in moderation. And is wheat germ vitamin E healthier as

Jane asked -I don't know.

>

> =====

>

[Guest guest]

Jill I have a message below from you from December 30th 2008 where you have the

ProEFA on order (and just started some unknown brand -could be wrong formula)

I mean the longest your (3 year old) child could have been on the " right "

formula of fish oils was 3 months? Fish oils are not an overnight fix even

though they greatly accelerate progress. In my opinion a few months is no where

enough time to know what the fish oils do. You could have added Teddy Grahams

to your child's diet after giving your child ProEFA for a month and all of a

sudden there is a new word and you could in theory credit that it's from the

sugar in the Teddy Grahams that created the further surge.

It's still my opinion and you are probably the perfect example of why I wouldn't

go this route until you give the basics a chance. In my opinion you never did

that. I mean you really just for all purposes started the fish oils. Gosh I

could go through the archives and pull up more messages than you would have time

to read with even more powerful surges than what you describe from fish oils

alone. One ProEFA then to two ProEFA than adding one ProEPA to the mix...read

it time after time. And I saw you were using 2 tablespoons of fish oil (the

wrong one I'm guessing) I would have to do the math to figure out how much fish

oil that is but that's way high too. We have found great success with even just

one capsule -like this report from BJ about her 4 year old...on one capsule a

day (which would be like 1/8 of a teaspoon?) More is not always better.

Hi all --

Short version: RUN . . . do not walk . . . to try ProEFA for

yourselves!!!!

I am absolutely astounding with my son's progress. Prior to starting

this

product, he was diagnosed with severe dyspraxia and never talked

unless

prompted.

Long version:

Well . . . we started (4, PDD-NOS, verbal dyspraxia) on the

Nordic

Naturals ProEFA capsules one week ago. He takes one gelcap per day.

Here are

some random notes I made this week . . .

Day #1: he appeared to sleep a more restful sleep at night

Day #2: he appeared to be " seeing " things in a new light -- i.e. he

was more

curious about things than usual, really looking stuff over (like he

was on

LSD or something). Answers questions more readily when prompted than

before.

Day #3: he is starting spontaneous, commenting behavior (for

instance,

telling me that " it's raining " in the cartoon he was watching)

totally out of

the blue. He also appears to be " following " the storyline of the

cartoons and

actually understanding what's going on. Actually laughing out loud at

the

cartoons when appropriate. When the commercial comes on advertising

that

kid's songs video, he is actually singing short little phrases along

with it

-- this has NEVER happened before. Apparently he's known the words

all along,

just couldn't voice them.

Day #4: spontaneous speech blitz. Commenting on everything. Expanding

from

his original repetoire of 2-3 word phrases (i.e. more juice please)

to 5-6

word phrases (can I have more juice, please?) and using intonation as

well.

Striking up " conversations " with his younger sister (1.5 years old),

as in

" Hi, Jacy, let's play. Do you want to play? " " Come on, Mom. Need new

diaper. "

New vocabulary words are being used that I think he's been " storing "

in his

head for quite a while. They're coming out of nowhere -- I'm not

prompting

these.

I did not tell anyone I was beginning these supplements on .

His

private SLP commented about what a leap in progress he's made in the

past

week or so. His special ed preschool teacher, and the school SLP,

also both

commented about this in our IEP meeting this week.

Teacher's comment from our communication notebook: " tons of

spontaneous

phrases today -- he said, " Look, here comes Lydia " and " We are going

this

way " while leading us to the playground at recess. "

SLP commented about his eagerness to work this week. Says he readily

repeats

anything she prompts him to. His articulation appears to be getting

clearer.

Private SLP commented that is starting to " direct " her group

therapy

sessions, telling everyone where to sit, etc. Funny!

saw a parent running across the parking lot yesterday (she was

running

late for pickup of her child). He shouted out clear as day, " NO

RUNNING!!!! "

I cracked up! The parent stopped dead in her tracks -- up to this day

she had

never heard say anything spontaneously.

Wow!!!!!!!!!!!!! Listmates, just so you know where we are coming from

here

.. . . I have had my son on a strict gluten-free/casein-free diet for

a little

over a year now. I keep an accurate daily report on his food intake,

behavior, disposition which helps me track down possible causes when

he's

having a bad day. The only thing we've been doing differently this

week is

the ProEFA supplementation. There is a direct correlation here to his

speech

improvements, as far as I can tell.

My only regret is that I didn't have the $22 to shell out earlier on

to start

on this regimen sooner.

I will probably write more later today, I still have a couple of

questions

and comments about our earlier discussion of whether or not to cut

down on

the hydrogenated oils. But I just wanted to pass along this great

news.

Thanks to the listowners and CHERAB for pointing me in the right

direction.

-BJ in polis, MD

Like BJ you could have seen more surges just by starting the ProEFA...just by

doing the 2/1 ratio of ProEFA to ProEPA...again check the archives- it works by

itself. And without the risks of going where just about no child in the world

has gone before...and where you now know there are risks. I mean I didn't know

and neither did any of us. If something happens to your child you now can't say

that.

As far as I am concerned with all I know now I wouldn't even put my 12 year old

or for that matter myself on a dosage of 1000IUs of vitamin E a day! They are

now warning against anything over 400 IUs even for adults as I posted. Did you

read everything I posted about hypervitaminosis e and the meta analysis? Also

as I posted a few times 300 IUs is " upper tolerable " level for a child your

son's age -you are over 3 times the " upper tolerable " level!

That same link states that nobody knows long term side effects of vitamin E.

It's no skin off this dan person if something happens to a child he recommends

1000 IUs of vitamin E to...I mean isn't it anyone -even one that isn't a medical

doctor that can be a dan person? Can't even a social worker be one? And even

if a medical doctor it could be a podiatrist right?

Your child will be one that will answer the question for the future

children...what happens to a pediatric human body after megadosages of vitamin e

after _____?

Unfortunately my son is already one of the stats that I'm sure will be included

in the final analysis. My posting this is to keep other members on this group

from having thier child be a statistic...and in my opinion for no reason.

And once again...after a decade with no real side effects we have the right

formula of fish oils that work for almost all children

http://www.cherab.org/information/indexinformation.html#diet

Here's your message from December 30th

Tue Dec 30, 2008 1:19 pm

" jilltracy74 " <jilltracy74@...>

Re: Omega 3 6 9 - WOW!!!

Dana - I have my proEFA on order - but in the meantime I found a

nice 3 6 9 combo at my local health food store - the brand is

Barleans. And it is liquid with lemonade flavor. I have been

giving DS 2 tblsp a say. I think the proEFA has higher counts - so

I should be able to give him a little less at the same potency.

Thanks, Jill

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