Re: Apraxia? (new)

[Guest guest]

Welcome to all our new members! I encourage both old and new members

to refer to the bookmark section of this listserve.

/links

I have been trying to add posts of interest to this spot. I read

something and then can't find it in the archives so I started adding

to the bookmarks section.

There is a folder just with EFA links.

> Hi, I'm new to this group. I have 4 yo autistic son and I don't

know jack

> about EFA's - can someone point me to a website that would be a

good place

> to start my research.

>

> Lillian

[Guest guest]

Hi Lillian,

There is more in the archives or on the CHERAB website

http://www.apraxia.cc We are in the process of having a new

(professional) site done now which will have much more of the updated

info -it just got to be too much for me to keep up with alone -and

many of the professionals that were helping with much time to us at

the beginning - are now all booked up and overwhelmed till mid Fall

based on all the positive results and word of mouth. In addition,

most parents that supplement their apraxic children fall off this

list once their kids start talking -even though it would be better

if they could stick around to discuss the next learning and school

stages since there's nobody else that understands what's happening

yet -just us. (so thanks to those of you that do post!!)

EFAs really help accelerate the speech process in most of our

children in an amazing and right now unexplained way -however, in

most kids I know, all aspects of apraxia don't just go away. Most

people have a " wait and see " or " so what? " attitude towards speech

impairments and as great as the ProEFA has been for speech -it really

has hurt the moral for raising awareness. So not many of us old

timers around to answer your questions unfortunately -lots of lurkers

and thank you to those of you parents and professionals that do reach

out to help others. I just can't wait till the research is done to

prove this and answer questions -because once the PBS documentary and

others like it air next Fall I don't know how we'll keep up as

parents!!

In the meantime- here is a repost of how this all started.

From: " kiddietalk " <kiddietalk@...>

Date: Wed May 15, 2002 10:59 pm

Subject: Re: Answers about ProEFA/ and history of how it came to be

known

As both and Traci said, Nordic Natural's Nordic Natural's

ProEFA is the same thing as their Complete Omega Ultimate Omega with

Borage Oil (it has to be that name -there are other Complete Omega's

that are not the Ultimate Omega)

ProEFA is the professional line which only used to be for sale to

health care professionals -not parents direct. The Ultimate Omega

line is the commercial line for parents, health food stores, etc. and

the only difference between the two is the price. Nordic Natural's

retail price for ProEFA is $19.95 for 90 capsules and it says

dosage " one a day " on the bottle, and the retail price for Complete

Omega Ultimate Omega with Borage Oil is $17.95 for 60 capsules and it

says " dosage two a day " on the bottle. So if you don't go by the one

a day vs two a day different dosages each bottle says and assume they

are exactly the same as they say -for those of us (most of us) who

have children that respond either moderately or especially

dramatically to the particular Omega 3 and Omega 6 formula of ProEFA

(or Complete Omega Ultimate Omega with Borage Oil) we are in most

cases willing to pay the extra $3.00 up front for the 30 extra

capsules (one month)

I think it's time I give some background to the

whole ProEFA thing because most of those with children that responded

when we first started the feedback as Rothweiler and Janet

Timari know just fell off the face of the earth once their child

started talking and it appears like this is a trend with those who

begin ProEFA unfortunately. It's the only bad part about it -parents

seem to lose sight of the importance of continuing to raise

awareness -

most of the children even when they start to talk still are not 100% -

even if they are close to it -and what about helping all you new guys

on this

list? And what about research which really was started in this case

by all of us -the parents, together with professionals? So due to

the fact there are so few old timers on this list anymore that post -

(thank you and other parents like you for sticking around to

help others even though your child is doing amazing) save this one in

the archives if this comes up again.

When my son Tanner responded so amazingly well to Efalex just weeks

after he was diagnosed with apraxia yet months after therapy with no

results as you can read under apraxia at

http://www.drstordy.com/stories.html , I had just started the

Children's Apraxia Network (August of 1999) and wanted to organize a

feedback with our new group. Our first meeting in August I spoke

with Nordic Naturals who offered to send us free samples of DHA Jr.

(cod liver oil) for us to try -and I was crushed when nobody

including Tanner had positive results with them. At that time I had

thought

all fish oil was the same. After hearing more

and more that it appeared to be only Efalex that worked for most of

us with apraxic children, I had long discussions with Michele, the

owner of Nordic Naturals and kept saying " There has to be something

in Efalex that you don't have in your DHA Jr. because Efalex works

and DHA Jr. isn't for some reasons for most of us.

I would have probably organized something with Efalex but they were

in the UK at that time through Efamol and my phone bill was already

starting to pile up with running the Children's Apraxia Network -also

I liked the Nordic Naturals company because I thought they were the

only ones that were trying to make fish oil more appealing to

children by making them into smaller strawberry flavored capsules

that I wish worked. One day Michele called me and said " I have

our version of Efalex which we think is better " So I again offered

to do a feedback -but this time, after switching Tanner

unsuccessfully from Efalex time after time I really didn't want him

to be part of it -but then I did try it for him because I was curious

and within a week Tanner had a surge and got the letter K sound that

we were working on for over a year -and within a month he started to

tell stories for the first time -and on only one capsule a day as you

can hear at http://www.debtsmart.com/talk/tanner.html !! (I have to

update that page!!)

We arranged for Nordic Naturals to ship product to do the same

feedback through the nonprofit ECHO of Canada with Rhonda, the

President -(actually at that point I did it through Children's

Apraxia Network) Both groups found the exact same results -little to

no change with cod liver oil (we used DHA Jr.) and then for the same

children -moderate to unbelievable dramatic changes within days to

just one to three weeks in most cases -and this wasn't a grouplist

thing where people can post what they want without knowing each

other. This was done through in CHERAB's case a support group where

we all knew each other -and each other's kids. We anecdotally found

out two things -that children with diagnosed and undiagnosed apraxia

had almost immediate changes on the ProEFA formula -and even more

importantly we discovered that the formula is very important -and

that fish oil alone doesn't appear to be successful for our children

for some reason, and that our children also required the small amount

of Omega 6 -such as found in the ProEFA -or the Efalex or Eye Q

formula's for some reason -maybe due to the anti -inflammatory

properties, perhaps they enable the Omega 3 to get to the small

vessels of the brain somehow where they are needed?

Why is ProEFA now available to the parents? I don't know if they

really want it to be, however when CHERAB did the feedback and due to

the success we all wanted to keep using it. Because after the

feedback the ProEFA supply was cut off to the parents and I said " You

can't do this to us!! You have to let us keep getting the ProEFA "

Nordic Naturals let me distribute it through the Shopin Service,

which at that time was just about the only way to get ProEFA if you

were a parent.

Even though we from the beginning got various media attention like

Inside Edition TV, etc., we were this small grass roots support

group/nonprofit yet wanted the world to know something that we knew

would seem " fishy " to anyone on the outside. So I was put in touch

with Katz PhD, formally of the NIH who runs the Omega 3

Institute who offered to assist us in organizing a professional

anecdotal feedback -which he did for the few months he was with us.

The reports were reviewed together by Katz PhD and

Zimmerman MD from Kennedy Krieger. Problem was we had asked for

reports from pediatricians which is what Dr. Katz wanted -which is

what most people sent in, and unfortunately most were promptly

discarded when they were reviewed and the pediatricians were

questioned over the phone, since the MD's in most cases did not

witness first hand the before and after -they filled in the reports

based on the parent's testimony. So therefore the only reports that

were OK'd for the professional anecdotal feedback were those from the

speech pathologists that worked with the children on a daily or

almost daily basis -which were only 19 of the reports. So in our

attempt to make a more credible report -which it was -we had a measly

amount of patients which is so sad since as we know there are

literally hundreds and hundreds of testimonies (as we had on our

quilt of hope that we had at the First Apraxia Conference)

Well soon after the media noticed these 19 professional anecdotal

reports as you can read at

http://www.shop-in-service.com/apraxia_conference.htm -which together

with the

continuing overwhelming amounts of parent testimonies -people all

over that heard about it with any type of late talker child not just

apraxic wanted to know -how do we get this fish oil? What is it?

What is the dosage? Is there side effects? Does fish oil cause

diarrhea, constipation or does it make a child regular if they are

prone to constipation? (Once again a child prone to constipation can

get constipation anytime -and I've asked experts in this area who say

that fish oil will not constipate people, just the opposite -in most

cases the addition of oil to a child's diet may cause mild looser

stools for a few days in a handful -not all, and it does appear to

make children prone to constipation more regular -and without having

to give them medications or reducing amounts -check with MD's)

Anyway parents that were optimists and just knew it would work, and

parents that were pessimists and didn't think it would work, and

those that weren't sure -didn't matter, almost all found that their

late talker children when supplemented had the same positive results

that you read about here. It took time for word to spread because it

really

does seem

so simple and easy and cheap and hard to believe and so why doesn't

everyone know and just do this (I don't know) and it

gradually made it's way to other grouplists, and into other disorders

outside of apraxia. So the demand for ProEFA vs the Ultimate Omega

Complete Omega with Borage Oil really grew since that's the name

everyone hears but they are the same except for ProEFA being a better

price per capsule which most people don't know. So Nordic Naturals

began selling ProEFA direct to parents -and they also started letting

other companies sell ProEFA to parents.

You can still ask your local drug store to purchase the Complete

Omega Ultimate Omega with Borage Oil -and you can also make up the

formula yourself by checking the amounts of DHA, EPA and GLA -I know

parents that have done that successfully too -just make sure you use

fish oil from reputable companies.

=====

[Guest guest]

If you are going to post just one site? I would say the best for EFA

info is http://www.equazen.com as the most comprehensive -however -

the CHERAB site http://www.apraxia.cc (go to " index " ) is the best for the EFAs

in

relation to apraxia.

=====