How
did this Apraxia Conference Come About?
Ms. Lisa Geng, President and founder of the Cherab Foundation, has been
supplementing the regular diet of her son, Tanner, diagnosed with verbal
apraxia, with a nutritional supplement containing a mixture of essential
fatty acids (EFAs) containing omega-3 and omega-6 fatty acids. The results
of the supplementation have been remarkable in that Tanner started to
talk and his speech improved rapidly. After sharing her experience with
hundreds of parents through the Cherab Foundation, many have adopted the
EFA supplementation approach and reported improvements in their child's
speech. Positive results led to The
First Scientific Apraxia Conference You may also want to explore the
archives of our grouplist.
What is ProEFA,
EFA, LCP, and DHA? Are all "fish oils" the same? And
could they possibly help your child? We all had those questions
at one time. Over time and as a group, Cherab found answers.
No, not all fish oils were the same. Name brand didn't matter, but
for whatever reasons children with communication impairments appeared
to benefit from the right formula and dosage of fish oil. Recent
small studies prove our many anecdotal feedback studies from years ago
were correct. Pure Omega 3 (DHA and EPA alone) will not provide
the same dramatic results as those who supplement with an Omega 3/6 formula.
In fact pure Omega 3 may not produce any results at all. Could be
due to the blood brain barrier so don't expect blood analysis alone to
provide the answers to this question.
Essential
Fatty Acid Treatment Study
J.B. Adams, J. Romdalvik, X. Liu
Summary: Double-blind, placebo-controlled study of effect of essential
fatty acids (omega 3 from fish oil) on children and adults with autism. Results: Possible minor improvement in group who received ProDHA, primarily
due to small improvement in social interactions. ProOmega group did slightly
worse than placebo. Improvement tended to be greater in those consuming
less seafood (0-1 servings/month)
Recommendation: ProDHA (from Nordic Naturals, www.nordicnaturals.com)
may have small benefit.
Additional note: A recent open-label study in Tucson* suggests
that ProEFA (which also has a small amount of omega-6) produced more positive
results than our study, so ProEFA may be better than ProDHA, but further
research is needed.
*Side note on
the ProEFA study. It was done for autism -but it was inspired by
a child with apraxia who has a parent that learned about the importance
of the right formula, dosage and quality of oils through Cherab.
Too bad that was not mentioned in history of the trial. But can't
change history.
Below is an archive from 2002
about how the 2001 First
Scientific Apraxia Conference
happened.
From the Cherab online group
Date:
Thu, 16 May 2002 02:59:14 -0000
From: "kiddietalk" <kiddietalk@yahoo.com>
Subject: Re: Answers about ProEFA/ and history of how it came to be known
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.
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 in The LCP Solution book or read under
apraxia online, 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 "Lisa 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 online!! (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 the first nonprofit I founded -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 Shop-in-Service,
which at that time was the only way to get ProEFA if you were a parent
outside of getting it from your doctor.
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 Robert Katz PhD, formally of the NIH who runs the Omega 3 Institute
who offered to assist us organizing a professional anecdotal feedback
-which he did for the few months he was with us. The reports were
reviewed together by Robert Katz PhD and Andrew 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 online -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.
=====
Lisa Geng
President CHERAB Foundation
Communication Help, Education, Research, Apraxia Base
"Help give our cherubs a smile and a voice"
