Late Talker vs. Apraxia

How did parents discover fish oil helped their children talk?

How did the Apraxia /EFA Scientific Conference Come About?

Official Scientific PostConference Statement

What is ProEFA, EFA, LCP, and DHA? And could they possibly help your child? The answer will be clear to all in the near future. This is because CHERAB will soon begin research on apraxia and EFAs (Essential Fatty Acids) based on the outcome of the hugely successful First Scientific Conference Dedicated to the Therapy of Verbal Apraxia/Dyspraxia. So...

How did this Scientific 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 have also been noted by Marilyn Agin, M.D., a former speech pathologist, and now a clinical developmental pediatrician, Medical Director of New York City's Early Intervention Program, who has a number of EFA-supplemented apraxic children under her supervision. CHERAB Foundation's resident speech pathologist, Lori Roth, M.A., CCC-SLP, who is also supervising apraxic children, has reported similar progress.

Ms. Geng asked Robert Katz, PhD, a Health Scientist Administrator with about 25 years of research program management experience and currently president and co-founder of the Omega-3 Research Institute, Inc. where he initiated and co-organized three international workshops on physiologic effects of omega-3 fatty acids to suggest possible approaches to validating these initial reports. The First Scientific Conference Dedicated to the Therapy of Verbal Apraxia/Dyspraxia was approved by the CHERAB Foundation.

Official Statement from The First Scientific Conference Dedicated to the Therapy of Verbal Apraxia/Dyspraxia! You may want to explore the archives of our grouplist.

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 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 "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 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 Shop-in-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 Robert 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 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 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.

=====
Lisa Geng
President CHERAB Foundation
Communication Help, Education, Research, Apraxia Base
http://www.apraxia.cc
http://groups.yahoo.com/group/childrensapraxianet
908-626-KIDS
732-871-6013 VM
"Help give our cherubs a smile and a voice"

The First Scientific Conference on Therapy for Verbal Apraxia/Dyspraxia

Postconference Statement

The First Scientific Conference on Therapy for Verbal Apraxia/Dyspraxia, held on July 23-24, 2001 at the Headquarters Plaza Hotel, Morristown, New Jersey under the auspices of the CHERAB Foundation (http://www.apraxia.cc), focused on "Essential Fatty Acids (EFAs) and Verbal Apraxia: A New Potential Therapeutic Intervention." A panel of scientific experts discussed the evidence presented at the conference in the form of professional anecdotal case reports on improvement of verbal communication ability with EFA supplementation in this population. The panel unanimously agreed that the existing scientific evidence justifies planning and implementing a comprehensive clinical trial to convincingly validate this new potential therapeutic intervention.

The panel discussed various clinical research alternatives including the following:

A controlled case series trial using currently available standardized speech assessment measures or developing new clinical assessment profiles for baseline and post-EFA testing

A randomized, placebo-controlled multicenter clinical trial of EFA and placebo supplementation to be undertaken as soon as possible. For example, if a randomized, placebo-controlled clinical trial would be undertaken, all diagnosed verbal apraxic children, including those with hypotonia and sensory integration disorder, who have not been supplemented with EFAs, would be eligible for randomization. The panel suggested that all randomized children would be supplemented with EFA or placebo in addition to appropriate speech therapy. This took into consideration the potential cooperative or possibly synergistic effect of the combined therapies in the treatment group. The length of the trial is proposed to be 3 months. Improvement in verbal communication skills, or the lack thereof using an assessment protocol as described above, would be the major therapeutic outcome measured, and plasma, as well as erythrocyte membrane EFA levels would be monitored periodically. The two groups would consist of about 20-30 age-matched subjects. ProEFA / Ultimate Omega "Nordic Naturals" would be the therapeutic supplement used in the trial based on preliminary successes attained.

In addition the panel noted the potential availability of electrophysiological measuring instruments that could serve as assessment tools of developmental-behavioral characteristics of a verbal apraxic child, and recommended the exploration of such techniques. While the panel refrained from discussing the etiology and pathophysiology of verbal apraxia, it also expressed great interest in what appears to be a presence of verbal apraxia in a percentage of children on the autistic spectrum and a possible association in other disorders and syndromes, such as: hypotonia, sensory integration disorder, dysarthria, attention deficit hyperactivity disorder, Kabuki Syndrome and cerebral palsy. The panel recommended further exploration of these phenomena.

Although no final decision was reached on the nature of the clinical trial/trials to be undertaken, the workshop ended with a commitment from all members to continue debating this issue in close collaboration with the organizers, and to reach a decision within the shortest timeframe possible.

The organizers thank all panel members for their tireless dedication and enthusiastic participation in the Workshop's deliberations, and thank all parents who contributed to the success of the workshop, by requesting the professionals supervising and treating their children to complete a professional anecdotal case report questionnaire on the outcomes of EFA supplementation. This workshop could not have taken place without their assistance.

The organizers also wish to acknowledge with thanks the assistance of many dedicated parents in helping with the logistic aspects of the workshop.

Last but not least, the organizers are thankful to the CHERAB Foundation's president, Ms. Lisa Geng, for her support of this workshop, and her boundless energy and enthusiasm in the service of verbal apraxic children and their parents.

The Scientific Organizers:

Marilyn Agin, M.D., and Robert Katz, Ph.D.,

Scientific Panel Members:

Marilyn Agin, M.D.
Medical Director, Early Intervention, New York City, NY

Susan E. Carlson, Ph.D.
Professor, University of Kansas, Kansas City, Kansas
Member Consortium for Fatty Acids (CFBFA)

Joseph Hibbeln, M.D.
Chief, Outpatient Clinic
National Institute of Alcoholism and Alcohol Abuse
NIH, Bethesda, Maryland

Robert Katz, Ph.D.
Managing Director, Consortium for Brain Fatty Acids (CFBFA) Omega-3 Research Institute, Inc.

Nancy Kaufman, M.A., CCC/SLP
Director, Kaufman Children's Center for
Speech Language and Sensory Disorders,
West Bloomfield, Michigan

Ann Moser
Director, Peroxisomal Diseases
and Fatty Acid Profiles Clinical Laboratory,
Kennedy Krieger Institute, Baltimore, Maryland
Member CFBFA.

Jennifer Hill-Karrer, Ph.D.
Associate Professor,
University of Kansas Medical Centre, Kansas City, Kansas

Lori Roth M.A., CCC/SLP
Speech Pathologist, CHERAB Foundation

Andrew Zimmerman, M.D.
Professor, Johns Hopkins University and
Kennedy Krieger Institute, Baltimore, Maryland

Guest Panelist: Guest Panelist: Guest Panelist:

Alexandra J. Richardson, MA, DPhil
Senior Research Fellow in Neuroscience, Imperial College School of Medicine, MRI Unit, Hammersmith Hospital, London; and University Lab. of Physiology, Oxford.

Guest Dinner Speaker:

Hugo W. Moser, M.D.
University Professor, Johns Hopkins University School of Medicine Baltimore, MD Director of Neurogenics Department,
Kennedy Krieger Research Institute Baltimore, MD

The Administrative Organizers:

CHERAB Foundation

Lisa Geng, President, Suzanne Smolyar, Executive Vice President, and Glenn W. Geng Executive Director, Treasurer

For scientific details on the Conference please contact Dr. Robert Katz, President, Omega-3 Research Institute, Inc at the following e-mail address: omega3ri@aol.com For all other information, please contact the CHERAB Foundation

Some Resources:

PRO EFA
This is the professional line of the child friendly, third person tested for purity form of EFA. ProEFA is the mixture of DHA (omega 3) GLA (omega 6) and EPA, and is the formula that will be used in upcoming research as a result of successful anecdotal case reports from professionals discussed at CHERAB's first conference for apraxic children. Supplemented children can not participate in clinical trials. Other products that may help your child's communication found here as well.
ProEFA, and other products that may help

Ultimate Omega
This is the commercial line of ProEFA, the child friendly, third person tested for purity form of EFA. Ultimate Omega is the mixture of DHA (omega 3) GLA (omega 6) and EPA, and is the formula that will be used in upcoming research as a result of successful anecdotal case reports from professionals discussed at CHERAB's first conference for apraxic children. Supplemented children can not participate in clinical trials.
Nordic Naturals

Omega-3 Research Institute
The official site for the Research Institute which is run by Robert Katz PhD. Dr. Katz led the first clinical scientific conference for verbal apraxic children.
Omega3 RI

A MUST Read About Essential Fatty Acids / EFAs
A book written for parents and professionals documenting some of the remarkable research by Dr. Stordy and colleagues on how essential fatty acids benefits those with various conditions, including apraxia. Our son Tanner's amazing positive results with EFA's are in this book too. To read some of it online at Dr. Stordy's website, click on the link below.
Dr. Stordy's Book

Ocean Essentials
More research on how various essential fatty acids are healthy for us.
Ocean Essentials

Join The CHERAB Foundation GroupList
Great site to learn about speech disorders like apraxia, and therapies that might help including EFA's from others. Our group list has information exchange from various medical, speech and educational professionals, and updates about current research. You can post your questions here. Once you are a member, you can also access the archives and research past posts. Option of no email web only
CHERAB GroupList

Join The Speech Diet List Serve
Great site to learn about EFA's from others. You can post your questions to the list. Once you are a member, you can also access the archives and research past posts.
Speech Diet List

FDA and 20/20 opinions on Mercury
is information from 20/20 TV, where they talked about mercury poisoning with medical and other authorities who spoke about a link between mercury poisoning and neurological conditions, including...language! This information was revealed to all of us by Dr. Patricia Kane at our January 2001 meeting BEFORE 20/20 and the FDA released their findings.
This page includes

	Mercury Information From FDA
	Mercury Information From 20/20 TV
	Mercury Information From Autism site which relates to apraxia
	Information from Dr. Stordy about mercury, and importance of DHA (from fish)