Re: , is it okay to start with ProEPA?

[Guest guest]

hi Marie!

There would be no harm in starting with any fish oil formula that doesn't have

mega amounts of vitamin E and K in it. The good thing about the essential fatty

acids is that they are essential and thus healthy no matter what. Worst thing

that will happen is that nothing happens as far as a surge -but still healthy.

I wouldn't be able to direct you to literature that finds ProEPA to be a better

formula than one with the small amount of GLA like the ProEFA. What I share

here

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-\

autism-and-other-communication-impairments/ is what we have found over the past

decade to be the best formula for the majority of thousands. There may be the

rare child that needs pure Omega 3 or higher DHA but that is not the norm. Just

like with vaccines you may be able to find a blog written by someone that states

cod liver oil or some other formula is better -and even if it's a study I highly

doubt they studied thousands over a decade. The archives here bring a wealth of

information to answer far more questions than any one study in my opinion.

In addition the best place to get information is from a local support group

because 9 out of 10 of the people seeing benefits with say ProEFA or NV won't

post about it -but will talk about it at a support meeting. Most people that

post here have questions- or share great news in the early days and then go off

to do " normal " stuff as I've said many times leaving new parents scratching

their heads. But as I keep in touch and am in touch with many of the original

members from 10 years ago- I can tell you that in general the success rate here

is high- and outside of one product called pharma omega speak which does contain

fish oils but with in my opinion way too much vitamin E and K for almost all as

we had horrific side effects including seizures reported in this group alone as

you can find in the link section -you can try as many regular fish oil formulas

as you like and see which works for your child.

Your main question perplexes me. Can you explain in detail? Give examples

perhaps? I don't know why a child would surge and then lose the skills. I've

never heard of that unless a child stopped taking the formula or had formulas

switched. Have you had your child's metabolic system tested at any point?

=====

[Guest guest]

Hi ,

Thank you so much for your detailed reply. I wasn't aware of the support groups.

Is there a list of these available anywhere?

We first tried fish oils back in 2000. At the time, DAN! doctors were

recommending the " priming " dose of EPO (1300 mg) for two weeks, along with low

doese vitamin E, followed by CLO. The first time we tried that, we got 25 words

out of my nonverbal child, but they all disappeared within 8 weeks. I kept him

on the CLO for about 8 months, but the words never came back. We took a break

for a couple of months, then repeated the procedure, and the words came back,

but again disappeared after a few weeks. We switched to ProEFA and went through

the same thing at least 6 times over the years.

At the time, no doctor had any idea or suggestions as to why this was happening.

No metabolic testing was mentioned or ordered. Before we could figure out why

this was happening, my son got a round of antibiotics and developed unbelievable

reactions to all supplements and herbs. This was in 2005 and he just now seems

to be able to tolerate supplements. Is there any specific testing you can think

of that could help us determine what's going on? Doctors have no idea, and I've

worked with as many as 12 doctors since this happened.

I am so very sorry to hear about Tanner's reaction to the Omega Speak Easy. Did

NV reverse all of the damage done? I know Tanner is doing fantastically well,

thankfully, better than ever, so I am guessing it did. I just started my son on

NV myself. My son is 17 and is only on day two on one-twelfth of the full dose

but I can tell you he is happier and attempting words again.

Thank you, and sorry to bother you with so many questions.

Marie

>

> hi Marie!

>

> There would be no harm in starting with any fish oil formula that doesn't have

mega amounts of vitamin E and K in it. The good thing about the essential fatty

acids is that they are essential and thus healthy no matter what. Worst thing

that will happen is that nothing happens as far as a surge -but still healthy.

I wouldn't be able to direct you to literature that finds ProEPA to be a better

formula than one with the small amount of GLA like the ProEFA. What I share

here

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-\

autism-and-other-communication-impairments/ is what we have found over the past

decade to be the best formula for the majority of thousands. There may be the

rare child that needs pure Omega 3 or higher DHA but that is not the norm. Just

like with vaccines you may be able to find a blog written by someone that states

cod liver oil or some other formula is better -and even if it's a study I highly

doubt they studied thousands over a decade. The archives here bring a wealth of

information to answer far more questions than any one study in my opinion.

>

> In addition the best place to get information is from a local support group

because 9 out of 10 of the people seeing benefits with say ProEFA or NV won't

post about it -but will talk about it at a support meeting. Most people that

post here have questions- or share great news in the early days and then go off

to do " normal " stuff as I've said many times leaving new parents scratching

their heads. But as I keep in touch and am in touch with many of the original

members from 10 years ago- I can tell you that in general the success rate here

is high- and outside of one product called pharma omega speak which does contain

fish oils but with in my opinion way too much vitamin E and K for almost all as

we had horrific side effects including seizures reported in this group alone as

you can find in the link section -you can try as many regular fish oil formulas

as you like and see which works for your child.

>

> Your main question perplexes me. Can you explain in detail? Give examples

perhaps? I don't know why a child would surge and then lose the skills. I've

never heard of that unless a child stopped taking the formula or had formulas

switched. Have you had your child's metabolic system tested at any point?

>

>

> =====

>

[Guest guest]

Wow I never heard of high dosages of evening primrose oil being good for our

kids -but back in 2000 it was still in the early days of fish oils for autism

and apraxia and many still didn't know what our group learned as that was before

our conference http://www.cherab.org/news/scientific.html (press release from

EngleMed http://www.cherab.org/information/dietaryeffects/Englemed.html )

I would for sure do the metabolic testing, and the good news is that I honestly

believe that not only does NV help with neuro repair and believe that will be

validated, but I believe that it helped to correct whatever Tanner's metabolic

issues were that I believe stemmed from the speak supplement with mega vitamin E

and K. This is how Tanner was speaking prior to speak

http://www.debtsmart.net/talk/tanner.html and Tanner did do an update for

but he hasn't put it up yet. I'll have to call him because I know he spoke to

Tanner right before he left for a trip.

I didn't do updates for a few years because Tanner's speech regressed so much

after speak it was a nightmare -and even when he came back to closer to where he

was at 11, he never spoke quite as well again...so I never updated his page

because how do you explain that?!! I knew it was a freaky thing from that

supplement that so regressed him -and my husband was furious -if he saw the

people behind that company I'm sure he would have kicked their you know what!!!!

Well I'm beyond thrilled to say that not only did NV bring Tanner back to where

he was, but he's far surpassed where he was before. I have solid belief that NV

in some way is supplying to him what he needs to excel, to overcome. I've said

before that the best word for it is normalization -but with a plus in that some

areas he is above average now. And yes we as parents of apraxic children and

teens tend to look at speech and motor skills -but you have a 17 year old

apraxic...let me ask you this. How is he with abstract humor and thought?

Tanner the way I put it had his " quirks " but we accepted that as " Tanner " That

was the way he is we thought after what?....ELEVEN years of therapy- speech,

occupational, alternative stuff like hippotherapy and cranial sacral and

listening and all the rest! Nothing ever, not even fish oils which I still and

always love and highly recommend -compare to the speed and dramatic results for

almost all in 14 months to 89 years old with various conditions works like NV.

And again I believe it's all because of whatever is in it from a nutrition

standpoint that was either missing in the diet or unable to be digested prior.

You probably already read these areas of surge- but it so much more than speech

and motor skills even those they are huge alone

http://pursuitofresearch.org/pursuit-of-research/ I looked at Tanner prior to

NV as " blending " in the mainstream- but homework was like pulling teeth. Put it

this way -If Tanner had homework -'I' had homework! Especially anything with

language based reading or writing! Now- all on his own -100% independent.

Before NV Tanner had no interest in the news for the most part outside of say a

story that had something to do with what was going on in our life say an

upcoming possible hurricane- and if we were watching a show like The Office-

Tanner had no interest and didn't catch any of the humor. Cut to after NV

-Tanner not only goes to Google and reads the news now (on his own) but he

discusses some of it with me. Like he said to me last night. " I feel bad for

the kids that have Tiger moms. I get As and Bs and once in a while get a C but

I have lots of friends and I get to play sports and have fun. Even though I

don't have to worry about it because I don't live in China, I do feel sorry for

the kids there. But I guess if I lived there that would be normal to me, but I

still don't think it's right. "

I mean not only reading the news but discussing thoughts about it?? Oh in so

many areas. In fact I have been meaning to write a blog on ADHD and apraxia as

" resolved " teens- pre and post NV- because there are so many that just 'think'

their child is the way that he or she is and that is it...because as you know

they get to a certain age and you just start to accept that. But somehow -NV

has created a paradigm shift.

=====

[Guest guest]

>

> hi Marie!

>

> There would be no harm in starting with any fish oil formula that doesn't have

mega amounts of vitamin E and K in it. The good thing about the essential fatty

acids is that they are essential and thus healthy no matter what. Worst thing

that will happen is that nothing happens as far as a surge -but still healthy.

I wouldn't be able to direct you to literature that finds ProEPA to be a better

formula than one with the small amount of GLA like the ProEFA. What I share

here

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-\

autism-and-other-communication-impairments/ is what we have found over the past

decade to be the best formula for the majority of thousands. There may be the

rare child that needs pure Omega 3 or higher DHA but that is not the norm. Just

like with vaccines you may be able to find a blog written by someone that states

cod liver oil or some other formula is better -and even if it's a study I highly

doubt they studied thousands over a decade. The archives here bring a wealth of

information to answer far more questions than any one study in my opinion.

>

> In addition the best place to get information is from a local support group

because 9 out of 10 of the people seeing benefits with say ProEFA or NV won't

post about it -but will talk about it at a support meeting. Most people that

post here have questions- or share great news in the early days and then go off

to do " normal " stuff as I've said many times leaving new parents scratching

their heads. But as I keep in touch and am in touch with many of the original

members from 10 years ago- I can tell you that in general the success rate here

is high- and outside of one product called pharma omega speak which does contain

fish oils but with in my opinion way too much vitamin E and K for almost all as

we had horrific side effects including seizures reported in this group alone as

you can find in the link section -you can try as many regular fish oil formulas

as you like and see which works for your child.

>

> Your main question perplexes me. Can you explain in detail? Give examples

perhaps? I don't know why a child would surge and then lose the skills. I've

never heard of that unless a child stopped taking the formula or had formulas

switched. Have you had your child's metabolic system tested at any point?

>

>

> =====

>