Upcoming Events

Inside Edition TV

Ask The Doctors

CHERAB Home

Join Our Group

Press Room 

Index

Apraxia what's that?

Scientific Programs 

Success Stories

 

 
Some EFA Tips:

You may wonder:

bulletHow do I get fish oil into my child?!
bulletDHA?, higher EPA? bit of GLA?, and what about carnosine?
bulletCarnosine?! What's carnosine?!!
bulletWhat Dose should I use?
bulletWhat if my child is allergic to fish?
bulletCan I give fish oil to my baby?

 

Coromega and other pure Omega 3 formula's like it and ProEFA and other Omega 3 and Omega 6 formula's like it are not the same things even though they could all be good quality fish supplements.  Coromega, Cod Liver Oil and DHA Jr., etc are only Omega 3 from fish oil (DHA and EPA) supplements vs ProEFA or Efalex which are Omega 3 from fish oil  (DHA and EPA) and Omega 6 from Borage Seed Oil or Primrose Oil, etc. (GLA) supplements.  If you get the oil from the liver-such as in cod liver oil-then it will naturally contain Vitamin A. Some doctors and parents like Omega formulas with the Vitamin A-and some don't-so keep this in mind.

As far as taste, it depends -some like one and not the others.  Some hate them all-and parents give them to their kids anyway.  The main reason that most people use the dietary supplement called ProEFA is that most children have much more dramatic results on ProEFA in much less doses than the rest -but please check with your child's doctor and as long as the supplements are from good quality companies try a few of them and see for yourself.  I mean, if we were just going to go by taste-I doubt most of us would be using fish oil at all!  

For those who want or need an EFA supplement without fish oil (if the child is allergic to fish for example) you could try Flax seed oil.  However- please read what Dr. Katz says about Flax seed oil:

"Flax seed oil or freshly ground flax seeds are an excellent source of
the essential omega-3 alpha-linolenic acid (ALA or LNA) which is the
quintessential parent member of the omega-3 family of essential fatty
acids (EFAs).  The body transforms it into EPA and the EPA into DHA.
This transformation is very inefficient (the yield is about 10%) and
is further inhibited by over consumption of omega-6 fatty acids from
most vegetable oils or certain disease states.  Therefore, it is
advisable to independently consume also  ready made EPA and DHA from good quality fish of from high quality fish oil supplements.  Some
recommended intakes are listed on the Introductory lecture on EFAs
that I gave at the First Conference on Therapy of Verbal Apraxia,
July 23-24, 2001, Morristown, NJ. (http://www.apraxia.cc)

The CHERAB Foundation's positive research results on potential
improvement in speech following EFA supplementation are based on the
use of ProEFA (Complete Omega) and that contains also another
essential fatty acid, GLA which is an omega-6 fatty acid. The latter
appears to be beneficial to children with apraxia.  It is not present
in flax seed/flaxseed oil.

None of these materials present with any known side effects or
known toxicity in an otherwise healthy person.  Nevertheless, we
advise every user of supplements to use them under medical
supervision. We don't know your child and we cannot provide you with
medical advice.

Sincerely,

Robert Katz, Ph.D.
CHERAB Foundation Director of Research"

My 5 year old apraxic son Tanner is a trooper and takes the ProEFA
from a spoon every day.  I hold his nose for him, but he doesn't mind
the taste.  We started the holding the nose thing when Tanner used to
take the efalex, which is very fishy smelling and tasting, and it's
kind of our ritual now. 

I rip only half of the protective waxy seal off the top of the ProEFA
bottle, and put a pin in the part that is left.  When it's time to
give Tanner his ProEFA, I open the top of the bottle, pull out the
pin, put a hole in the capsule, put back the pin, and squeeze the oil
onto a spoon. 

Here are some other things we used to have to do when Tanner took the efalex which he hated. (Efalex is fishier tasting and smelling)

1.  We would put just put a drop of fish oil in the middle of the
bread for a sandwich and cover with peanut butter, a drop in the
middle of a pancake, a drop in the middle of a bowl of spaghetti. 
etc.  if we put too much fish oil, Tanner would not eat the food. 

2.  Glenn and Tanner and Dakota would each hold a cup filled with a
dash of juice.  Tanner's juice was always "spiked" with efalex. 
Tanner is very competitive and would love a good race. "Ready set
Go!" and Glenn would hold the cup to his mouth without drinking and
then stop and have all three compare who drank the most.  Of course,
Tanner was winning!  They would keep doing this until Tanner won
(which meant he finished the efalex fish oil spiked juice)

3.  I used to bribe Tanner with gummy bears that he could have
after.  Didn't work as good as the first two.  But for a long time we
did a combination of number one and number three.

4.  Tanner's older brother started taking the fish oil, and Tanner
wants to do what Dakota does.

5.  As Tanner got older, at about four, we started calling the fish
oil "yucky magic fish oil which helps you talk" and we really made a
big deal about how yucky it was, and would "show off" to people how
Tanner could take this yucky stuff and eat it right off the spoon. 
It worked for Tanner! 

It was lots of work, but well worth the results.  If your child will
not take ProEFA, maybe buy some efalex and try that.  Compared to
efalex, a sock would probably be a treat!

Again, some EFAs  are liked by some children-hated by others.  With ProEFA - many kids from the CHERAB group will just eat it from a spoon, or chew the capsule since borage oil is naturally sweet.  I
can say that ProEFA does not smell like some of the other EFAs we've
used.  After a year and a half of Tanner hiding behind the couch when
it was time to take other fish oils, this was amazing even without
all the great breakthroughs he's had!

The improvements when on the right supplement and the regressions on
the wrong one are pretty quick-within weeks in most cases-so again
you can see for yourself-like most of us did already!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Subject: DHA?, higher EPA? bit of GLA?, and what about carnosine?


Hi everyone!

It's hard to answer all the recent questions on one email. I can
tell you that there are some questions that came up that can not yet
be answered by anyone for sure (most of them!) -and the professionals
will tell you that. Karen gave some great advice to answer our
questions about the EFAs, in a nutshell online search for answers at
http://www.google.com which is a great search engine -or go direct to
PubMed or other sites like that to do searches. Keep in mind it's
just like anything -our children's doctors need to know so many
things that they may not focus on any one and may (probably) not have
studied EFAs in medical school. In order for your child's
pediatrician, neurologist, teacher, SLP etc. to take EFAs seriously -
don't depend on the anecdotal emails you read here alone -bring them
information from more credible sources -such as research funded by
the NIH like http://www.momtahan.com/mmartinez/

I tell almost every parent I speak to that renting Lorenzo's Oil is a
good thing to inspire you to the situation I believe we are in with
the EFAs. It's frustrating to realize that there would probably be
more awareness campaigns and more money for research if we found the
same anecdotal results from feeding our children the McDonald's Filet
O' Fish sandwich than from plain fish oil alone.

As I've said in the past - I personally can't wait till they figure
out how to put all the Omega 3/6 that's helping so many children
speak into food. For more than one reason. Seeing how great it's
worked for so many "late talking" or apraxic children, and us, the
parents, I can't wait till it's in stuff like ice cream and all so
that I can stop hearing so many saying their child's doctor wonders
about fish oil like it's some kind of drug. It's a food supplement-I
just can't wait till it's a food. Then it will be silly to say "Dr.
Smith is it OK to give Molly eggs from Eggland's Best?" Or "Brian
loves fish oil Ice Cream? Should I switch him to a brand without fish
oil anyway?" I know right now at least two companies that are
working on developing to launch an odorless and tasteless Omega 3/6
powder to add to foods -Roche and Ocean Essentials. And a very cool
article from October 2001 (so we may be seeing more and more of these fishy foods going ahead in the next four years) is here
http://www.umass.edu/newsoffice/archive/2001/100301Mackerel.html "The U.S. Department of Agriculture (USDA) is providing almost a $1
million to UMass over four years for this project, and nearly as much
over the same period divided among the University of Connecticut,
Pennsylvania State University, and Harvard University Medical
School."

I appreciate that there is lots of questions about all these things
we are talking about -DHA, EPA, GLA and now carnosine. When we
became parents it's not like we expected to have to study neurology
and brain chemistry -or become neuro scientists or anything. As
Donna pointed out -many medical professionals and academics will
laugh or scoff at the research done up till now. Yes attacks will
come to most who believe in something silly like fish oil therapy -
but let them laugh, our children are talking because of it. We as
the parents and professionals exploring these new therapeutic
approaches are pioneers.

I know that there are some well known in the motor speech disorders
area PhD's like Dr. Crary who is going back to school to do more
research and who has a great interest in the EFA and carnosine area.
The more research done the better for all the children. In the
meantime- I don't know whether all the studies have been good or not -
I just know what we are seeing in just about every child in one to
three weeks, and I don't believe it's fair not to share that
information and give parents the right to make a choice now vs 5 to 6
years from now. I for one wish I knew sooner.

When it comes to supplements or any untraditional therapy suggested -
my advice is to start one thing at a time and keep it simple (KIS) so
you really know what is working -and what's not. There are various
supplements or diets that are talked about here do work amazingly
well for some, and some have a better success rate than others. In
general -you may want to consider trying EFAs first since that
anecdotally works for almost all within days to three weeks in
general. If you have your child on ProEFA, Efalex, or Eye Q or some
other Omega 3/6 formula with no other supplements other than a multi
(regular diet and no blood analysis) wait a few weeks to see if there
are any positive changes in speech, motor planning, focus, and
behavior. I would then recommend looking into the carnosine -talk to
your child's doctor about it.

I would again not recommend starting ProEFA with extra EPA and
carnosine all at once or how will you know which one your child is
responding to? I always suggest starting with just one ProEFA -wait
a few months till there is a plateau to either introduce the
carnosine, or to go up to one and a half or two ProEFA, but just one
or the other. Once you are up to two ProEFA a day -instead of going
to three ProEFA -I recommend adding the additional EPA. Just do it
all gradual -this may take 6 months to a year to do all of the
above. Why? So again you can see what your child is responding to
the most. Is it the Omega 3/6? Is it from the carnosine? Is it the
higher EPA Omega 3/6 formulas? (Omega 3 formula's alone including
high EPA formulas are not anecdotally successful for some reason)

What I've seen with each myself? Here is an archived answer:

For the most part -Tanner's had amazing surges on first Efalex and
then ProEFA -still he didn't talk lots, and kept most of his
sentences shorter. Since the increase in EPA and carnosine to the
ProEFA, and the addition to traditional ST and OT of karate and
swimming lessons, and cranial sacral and therapeutic listening
therapy, I've seen more surges and changes. I posted that after I
increased the EPA to the ProEFA I noticed an immediate improvement in
syntax within the week which stayed with him and is noticeable to
all -I was calling people on the phone to let him talk to them.
Tanner also was talking like a baby before this, and even though we
were thrilled he was talking -he was mixing up past and present and
leaving out the little words which is when I looked into it and
posted lots about SLI -or speech language impairment, and when I
asked Paula Tallal PhD, and Judy Flax PhD to also be advisors to
CHERAB (check the archives). When I added the carnosine recently I
noticed an increase in the length of speech -more imaginative speech
as you can also see from recent posts in the archives -and all around
just "talking and talking" now. (we need a new "speech" supplement
that combines all this- that doesn't exist yet) The cranial sacral
therapy and the therapeutic listening have both shown improvements in
the smoothness in the speech -and the karate and swimming I believe
are beneficial for a number of reasons including confidence and
awareness of the body for motor planning reasons.

So just like for supplements -I believe observation is the best
advisor for you as a parent

And here is an archived answer about why I started using the higher
EPA with Tanner.


"...I actually had purchased the ProEPA to up the EPA for my son
Dakota who has been diagnosed by every neuro doctor and teacher since
preschool with ADHD and we are avoiding meds still because he is
excelling in school since we started the fish oils - we have been
trying various formula's of the EFAs to find the best for him to help
his attention still which the fish oils still don't help as much -
however for some reason, he too does better with an Omega 3/6 combo
formula which we didn't know until this year. Dakota was given all
the many bottles of fish oil that didn't work for Tanner when I
thought they were all the same -not realizing back then that most
were just DHA and EPA alone. This year I started to give Dakota the
higher EPA Omega 3/6 mix based on the stuff I read at
http://www.equazen.com before I just found out that the research on
ADHD was with Efalex -I thought it was with EyeQ and the higher EPA.
So I started giving Dakota a ProEFA/ProEPA mix -not Tanner.

Anyway, not knowing, my husband started to give the ProEFA and ProEPA mix to Tanner as well when Glenn and the boys went to Boston to visit my new niece for the weekend when I couldn't go this past January.  When they came home, Glenn was saying how my relatives were all commenting on how well Tanner was talking, and in just that one
weekend I too noticed he was talking a bit faster and more clear.
Once I found out that Glenn gave the mixture to both I kept it up,
shared it with Dr. Agin, and watched, and keep in mind that Tanner
was not in any private therapy at that time. What we saw was a surge
in about a week in speed, recall and great improvement on syntax -he
was no longer "talking like a baby" and mixing up past and present
and leaving out the little words. I was very quiet here about because
I wanted to see if this was just unique to Tanner. So I told a few
other parents and the doctors about it, let them hear Tanner over the
phone I was so proud of him, and I again shared this news with Rhonda
to share with the ECHO Canadian group (can't wait to see you guys -
and no it's not bean-o I'm bringing for you!!) and I waited to see if
others also saw a surge -which it's OK now -you guys can start
posting what you saw.

I still think it's best to start with just the one ProEFA capsule a
day. Increase to two only after the surge isn't that great anymore.
Than after you hit the second plateau again sometime after a few
months-that's when it's good to try upping the EPA a bit by squeezing
a bit in to the mix. If you do it gradual like this then you can see
what is working best for your child..."

This is just my viewpoint and please feel free to share or disagree.
We are all in this together and have the same end goal for our
children!!

=====
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"

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Subject: Re: Dosing Question

Hi Liz,

Thanks so much for the info. I've been speaking with them too-and
I've had a chance to ask this question to a few scientists. I found
that basically, the answer is really "I don't know" or "I don't want
to say because I could be liable" when you dig a bit beneath the
surface. The reason that Efalex recommends a higher dosage is
because that is what they found successful in clinical research-and
until clinical research is done with each type of EFA formula (DHA,
EPA, GLA, etc.) there won't be a clear cut answer to our questions
for every EFA formula out there. Since Efalex did have research done
by Dr. Stordy- I'll be posting another message soon from Dr. Stordy
about this. (co-author of The LCP Solution book with Malcolm Nicholl
http://www.drstordy.com )

Dosing questions need to be answered because what we are seeing is
like a miracle for so many of the children, and their families-and
not just with apraxia. For example-I just received two private
emails from a parent from this list who has three sons with CP -each
one has other issues as well (one with apraxia) -and each child is
remarkably responding to EFAs -as well as her husband. Maybe she
will share here as well. I received private an email from Lori D
(NJ) a forwarded post sent out to the list for Hearing Impaired
about our study and how EFAs can help children who are deaf with
communication (If you go to the archives of speech diet there are a
few posts there too about it) And then with the recent posts here
about the babies responding within a week-and posts like Melanie's,
Karen's or Pam's, etc. where in a few months the apraxic child
progressed from essentially nonverbal to sentences- way faster than
any apraxia therapy alone could have brought an apraxic child in that
amount of time -it just gives you chills to hear these things! And
at the same time it shows the huge range in ages-weights, etc.

It leaves all of us as parents in the void of knowing "what dosage is
best for each individual?" I'm not curious as to what they
recommend on the bottle-or even what the FDA recommends -I'm saying
that right now I'm curious about what is the best dosage-and it's a
question that really doesn't have an answer. We don't know and won't
know until research is done to questions like: is there a maximum
amount you can give a day?, etc.

This is what we can know from the bottles: If you have a child who
is one years old or 7 years old or an adult you can give one (or two)
capsule(s) a day of ProEFA- Efalex says: "Taking this product for the
first time - Adults and Children over five: 4 capsules each morning
and evening with food or drink for the first 12 weeks. Children under
five: 2 to 3 Efamol Efalex capsules each morning and evening with
food or drink for the first 12 weeks. These levels are based on
research studies which indicate it could take up to 12 weeks to fill
the body's stores. After that a reduced is sufficient to maintain
the levels."

If you know the science and the math you can figure it out-so here
are the two for example that my son Tanner has responded to amazingly
well.

Efalex has:
per 2 capsules (at least times two-and up to times four for each
number here)
DHA (from fish oil-Omega 3) 120 mg.
GLA (primrose oil Omega 6) 24 mg.
AA 10.5

ProEFA has:
per one capsule (as is or times two)
DHA (from fish oil-Omega 3) 99 mg.
EPA (from fish oil Omega 3) 148 mg.
GLA (from borage seed oil Omega 6) 40 mg.

The question still is however-how come a much lower dosage of ProEFA
is working better for most of our apraxic children than the higher
dosage of Efalex. And...can we increase the dosage of ProEFA from
one or two a day? And what happens then? I want the factual answer-
just like all of you, but we just don't have it yet!

As a group we are "trail blazing" as Pam said, and since not all of
our children are pure apraxics-we are as a group finding out how EFAs
are helping in other conditions-some which are being discussed
privately right now! It's very exciting now -and I'm sure will be
taken for granted in the future as accepted knowledge.

Now keep in mind that some parents of young children way under 60
pounds are already using 2 capsules a day. I do get quite a few
private emails about dosage and we all see them here too- I
just wanted to send this out to let you guys know that no matter how
professionally it's said-the bottom line is nobody really knows yet
what is best-which is why research needs to be done in this area for
EFAs. In the meantime, look at the dosages on Efalex since research
was done with Efalex -and compare - then use common sense and
parental instincts together with speaking with medical or other
professionals you trust!

I know some people aren't happy with that and are looking for a more
exact answer. In that case-use one or two capsules of ProEFA a day
or four to eight capsules of Efalex a day-as it states on the bottles.

Talk to you soon!

=====
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"
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Here is some information that is very interesting concerning younger siblings of older children with speech delays/disorders.  You may want to join the CHERAB grouplist for some of the actual stories of those who have seen results within a week of supplementing thier babies, it really is amazing- it appears to be working! (and as you know the FDA just approved EFAs for baby formula-so maybe in the future, less apraxic children?!)

 

From:  "Robert Katz, Ph.D."
Date:  Thu Nov 22, 2001  11:24 am
Subject:  Re: nervous about 2nd child
 
 Dear Kathie and Eileen,
 
The question is can EFAs be supplemented to younger children so that
verbal apraxia/dyspraxia can be prevented?
 
The simple theoretical answer to this is a yes.  Recently, the U.S.
Food and Drug Administration approved the addition of 100 mg/day of
DHA (Docosahexaenoic, an omega-3 EFA) and 100 mg/day of ARA
(arachidonic acid, an omega-6 EFA) that is produced from GLA to
infant formula.  The purpose is to make infant formulas more like
breast milk.  So, giving the content of one ProEFA to an eight months
old would provide about the same amount of DHA and half the ARA. 
Since some of the linoleic acid from the borage oil will be
transformed by body into ARA, the total ARA will be close to the 100
mg/day dose.  The 140 mg of EPA will be welcomed by the body.
 
Recommendation:  Since these are over the counter nutritional
supplements the decision as to undertake this preventive pathway or
not is ultimately yours.  Nevertheless, please contact your
pediatrician and share this information with him/her.  I shall be
happy to answer your pediatrician's questions on the above.
 
I would like to hear from all those who want to try supplementing
siblings with EFA for preventive purposes BEFORE STARTING THE
SUPPLEMENTATION. It would be great if we could follow the changes in the supplemented sibling as they happen.
 
Best wishes and have a Happy Thanksgiving!
 
Robert Katz, Ph. D.
CHERAB Foundation
http://www.apraxia.cc
 

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.

 


Click to subscribe to childrensapraxianet A global source of support overseen by medical speech and educational professionals.

 

 

 

Send mail to Support with technical questions or comments about this web site. 
Copyright 1998 
Last modified: Friday, June 03, 2005

To find your way around the CHERAB part of this site please click here for the index.

"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." -- Margaret Mead, anthropologist