ProEFA study presented at Autism conference

[Guest guest]

This was actually years ago. Goodman, a parent who lives in

two states and who traveled all over to try to seek help for her son

knew about the ProEFA through me -but due to other therapies (she

was big into cranial sacral therapy) and that the only apraxia group

that was talking about and even (gasp) recommending to explore EFAs

was CHERAB -and we were a fairly new group...many didn't take my

rooftop yellings about EFAs as serious. OK so as a toy inventor

being serious wasn't my forte -but I knew what I knew. Anyway -

finally tried the ProEFA and as almost always within the one

day to three weeks he had a dramatic surge. Her son's SLP was

shocked and the rest of the children in the practice all started the

ProEFA and said to me " and out of 19 children all of them had

the same dramatic surges in the same time except for one " and I

said " and the one that didn't had severe autism right? " So

said " How did you know? " and I said " because I don't think they have

the same thing as the rest of our kids "

Well one of the patients of this SLP -his dad is a doctor and was so

impressed he wanted to do autism research with EFAs. I hear that

the University there offered him money to expand the study -but I

don't believe most want to study anything but autism since that's

all that is studied. (unless anyone knows of a large apraxia study

done that I don't know about? Anyone?)

Anyway -Sallie Bernard was kind enough to just let me know the other

day about a new EFA study being done for autism funded by Cure

Autism Now (CAN) From what I read the study stated using just " DHA "

was being used which as you know is a great concern to me. Here is

just my response since I'm not sure if I'm allowed to publish here

who is doing the study. Again -if an EFA study is done with the

wrong formula -it won't work or work well for our children -and it

may not work at all for those with " severe " autism from what I've

seen except for the coexisting aspects of it that involve the

multifaceted aspects the majority of these children today have.

" Sallie any chance of them doing a section of the study as well that

includes

an Omega 3 formula with a small amount of Omega 6 in it. I'm afraid

any

study without the Omega 6 will not be positive -and if positive not

dramatic

changes like we are seeing unless it's

A. Very high dosage of DHA ...or

B. Small dosage of DHA with an even smaller amount of GLA. (and

even

better if it's DHA and EPA with higher EPA than DHA)

We did 2 feedbacks from our group as parents prior to the

professional

anecdotal one you know about and little to mainly no change on pure

Omega

3 -and moderate to dramatic change on the mix with much smaller

dosages.

These results are still reported by just about all as you can read

in the

archives -or find out at group meetings. Nobody knows why -but my

theory is

that the small amount of Omega 6 has the stronger anti inflammatory

properties that enables the DHA and EPA to get to where it's needed

in the

brain. Dr. also explained to me why the EPA was more

important

the DHA (both are Omega 3s) Dr. said her country (the UK)

has

studied the EFAs for 5 years longer than us and while we still think

the

secret is the DHA -they found the EPA is of greater importance.

Anecdotally

we found this to be true as well. In general I found that all that

matters

is the dosage -formula and quality of the oils. On the right

formula it

works for almost all -and I just hope they use the right one.

This isn't just working for apraxic -but for symptoms of PDD and

autism too.

The only group where the results of the right formula of the EFAs

are not

high positive are the severe autistic population -but I'm not sure

if they

have the same multifaceted disorder that the others have. Also -I'm

not

sure if blood work is the way to go because just because it's in the

blood

doesn't mean it's in the brain. We have parents that fit that

profile too.

What about the SPECT scans -I know MDs like Dr. Nolan Altman

believes this

could and should be studied even to just prove that the EFAs pass

the blood

brain barrier and what changes.

Any way to know what formula/dosage, or chance of them including the

aspects

I mention above in any way?

http://www.cherab.org/information/historyEFA.html is a page about the

beginning stages of what we know so far. I so wish that we can

prove what

we found so all know. If done right -this will help so many all

over. "

=====

[Guest guest]

So, on this thread since I must have posted to long on my re-entry

post...

Does anyone know if the MORE EPA from the UK is being manufactured

here or if there is a distributor here, or do I have to order this

straight from the UK?

What is the current practice on this list with fish oils?

My son initially had a phenomenal response and we have never gotten

the fish oil talking response again. His autism is extremely reduced

with everything we have done as is his visual impairment. I know the

oils are still a factor and have never been able to get it right

since the first try.

Thanks,

Lynn

Austin almost 4 (LCA and ASD) rather than say he is blind in

autistic though it's more correct NOW to say that he is visually

impaired and mute- signing is coming along fast now!

[Guest guest]

Lynn!

You're back!! What is the EFA formula you are using now? Many of

the members that left do not realize that the EFA formula and dosage

may require changes over time. Also I know you started to explore

other nutritional techniques through the autism boards, many which

suggesting including cod liver oil -which most don't realize changes

the EFA formula to raise the Omega 3 even higher over the Omega 6

thereby perhaps making the EFAs less or ineffective. More is not

always better.

So please let us know what EFA formula you used and are using now

since I know you started the same way we almost all did (except for

old time members like me who started with Efalex) -with just one

ProEFA capsule a day. You also used to have the pictures up of the

dark circles under your son's eyes which were indicative of your

son's diagnosis for his eyes as before and after pictures once on

the EFAs and that was so incredible too!

Welcome back! (If you answer and I don't get back right away -I

still have family visiting from up North -but I will answer!)

=====

[Guest guest]

Hi!

BINGO- I think you enlightened me. I've been told to increase his

cod liver oil as this is suppose to restore his g-alpha protein

defect. In reality what I'm discovering is that he needs the water

soluble A and not cod. So I've also done ProEPA and ProEFA. I

actually started him on EFALEX, which is what he had the amazing

results in 40 mins to an hour with. , you wouldn't believe how

amazing he looks now! He is back in glasses and his vision is

improving, though he is still very visually impaired. I KNOW THAT

the EYES and SPEECH are still connected. He wasn't metabolising

properly which is probably why he lost the initial wow. I was

directed to a product available in the UK called More EPA, it's 90%

EPA. Are you familiar? I want to try this as I know the EPA is a

clue but other EPA products aren't working.

His intestines are healing and he is communicating with signs. Two

weeks ago he began really coming out of it and his autism is very

mild other than speech, or the lack there of. So, now we are a bit

more fitted to this group again! YEE HAW! He is on MTPromoter as

well as other nutritional supplements. His cognition appears fully

intact despite having poured out metals in chelation. He's answering

questions now too!

Thanks for the help and I'd love more direction!

Lynn

> Lynn!

>

> You're back!! What is the EFA formula you are using now? Many of

> the members that left do not realize that the EFA formula and

dosage

> may require changes over time. Also I know you started to explore

> other nutritional techniques through the autism boards, many which

> suggesting including cod liver oil -which most don't realize

changes

> the EFA formula to raise the Omega 3 even higher over the Omega 6

> thereby perhaps making the EFAs less or ineffective. More is not

> always better.

>

> So please let us know what EFA formula you used and are using now

> since I know you started the same way we almost all did (except

for

> old time members like me who started with Efalex) -with just one

> ProEFA capsule a day. You also used to have the pictures up of

the

> dark circles under your son's eyes which were indicative of your

> son's diagnosis for his eyes as before and after pictures once on

> the EFAs and that was so incredible too!

>

> Welcome back! (If you answer and I don't get back right away -I

> still have family visiting from up North -but I will answer!)

>

> =====

>

[Guest guest]

Lynn most of us that raised the EPA too high (in our excitement

of the surges from the higher EPA) found that when too high -there were

regressions. Can't be too high or it doesn't work either.

EPA or DHA are both Omega 3 oils and without the Omega 6 in 'most'

cases don't work for our children -or work dramatically well.

Working with ProEFA and ProEPA I found for ADHD for Dakota that

higher EPA was better than it was for Tanner. While Dakota is a one

to one ratio -Tanner needs it to be a two to one ratio with the

ProEFA being higher for some reason. A few others have posted to

find the same -but not enough to know for sure. As Dr. Stordy says -

" it's still a blunt tool " . (and Karyn -it's all in the formula. In

this group many of the children have sensitive systems and some have

seizures and some are on feeding tubes and yet the worst " side

effect " we hear reported is " loose stools " and " hyper activity "

which for those that continue despite the hyper activity it's

repeatedly reported that it only lasts for a few days to 2 weeks and

then the surge. from this group and others have posted about

how the EFAs 'do' help with OCD or Tourettes anecdotally -I'll put

's one archived post below and I'm sure she'll update us on

!)

Lynn -run all this by Austin's doctors, but I would first

suggest you stop or at least lower the cod liver oil and either go

back to just the Efalex -or just the ProEFA and ProEPA. If you

switch to the " MorEPA " (never heard of this one prior so I looked it

up online and believe this is the correct spelling for it

http://www.healthyandessential.co.uk/product_info.php/cPath/25/produc

ts_id/64 You can buy it from the UK and just have it shipped here

I'm sure) I would add a small amount/few drops of either primrose or

borage oil to it since it's a pure Omega 3 oil. I'm sure you'll see

a surge once you lower the Omega 3 a bit and go back to a similar

Omega 3 and Omega 6 formula -and then work from there and keep

tweaking a small amount at a time. When it's just right you know it.

Please let us know how it goes!

~~start archive message~

From: " Jennie Lyon " <borngmama@...>

Date: Mon Sep 8, 2003 11:45 am

Subject: Re: OCD

Lindsey has OCD

Lindsey's was so bad at one point her psychologist said she was very

close to

being put in the hospital.

Here are some things that Lindsey did. She is on Risperdal now and

it has helped

so much!!!!!

When Lindsey woke up she had to check to make sure all the doors are

shut then

presses on them,and the lights. Theres a certain light she had to

have on. The

chairs had to be right too. She would also line up the shoes and

know right away

if one has been touched.

She also had to touched something over and over. These things would

go on ALL

day.

OCD is something that really interfered with her life. She could not

finish a

meal because someone left a door open,and she could think of NOTHING

but that

door.

She NEEDED to do these things to make her feel good for a brief

period until the

urge took over again.Its like needing a drug and not feeling right

until you

have it.

She's had alot of tics also,so the Dr is calling it Tourettes. We

see the

Psychiatrist every 2 months and was seeing a psychologist once a

week, at my

house and at school.

There was a time that instead of playing at the park she would fix

every ones

shoes instead, or at a restaurant she would have to fix all the

chairs,sometimes

before the person has barely gotten out of his chair,but for the

most part she

would refrain from OCD until she gets home and then it explodes.

Last year at

school she fixed all the chairs and thats it! but at home ,she could

barely eat

because the OCD was so strong. Her worse OCD behavior was

saying " sorry mom " I

cant even tell you how severe this was,I have her on tape but I

can't even watch

it. Not only did she say " sorry mom " 100 times a day, she needed me

to respond a

certain way.

This is the OCD that I know about! Nothing to do with your

situation,but I just

wanted to share. I do not know all the types of OCD.

OCD runs in my family,so that and having apraxia could play a part,I

guess?

Jennie

mom to Lindsey- age 7

=====

[Guest guest]

thanks!

On the OCD... I recommended well over a year ago that a person sent

to me for help with their son, (thru my mom) come to this list. I

explained to her about fish oils and the results you all had been

seeing here and my results initially with Austin. She got off the

phone with me and went to buy omega 3 fish oil and came home with

borage oil instead. She called me 3 days later to tell me her son

was talking like he never had AND, his OCD had gone. Thought I'd

post that.

On balancing oils, I really think Austin needs the borage or EPO

with the 3's. So thanks for suggesting not too much EPA. I don't

think I can order the More EPA from the UK as it has no shipping

options for the US. I'm certain the shipping would be extreme. I

currently have several nordic natural bottles of various

combinations. So your favorite suggestion for us is still ProEFA?

One capsule? I think we may need more EPO or borage to go with it

since the fat content of his foods is fairly low anyway. He eats

pretty much organic meats, veggies and some potatoes (sweet and

white). When he gets chips or junk foods his oils on them are

safflower or sunflower. Very very little sugar at all. Considering

this, would you suggest I retry the preloading of more 6's first?

Did you know that Efalex changed a bit? I did retry it after finally

relocating it months ago and there was no change in him at all. I

had an old bottle and the formula wasn't quite the same.

Thanks again,

Lynn