Role of polyunsaturated fatty acids in the management of Egyptian children with autism
Department of Research on Children with Special Needs, National Research Center, Cairo, Egypt
Meguid NA, Atta HM, Gouda AS, Khalil RO

OBJECTIVE: Estimation of free polyunsaturated fatty acids (PUFAs) in blood and evaluation of behavior of autistic children before and after taking fish oil (Efalex) were performed.

DESIGN AND METHODS: 30 autistic children (18 males and 12 females) aged 3-11 years and 30 healthy children as control group were included in this study. Tandem mass spectrometry and CARS were used to estimate the free PUFAs from dried blood spot and to evaluate the autistic behavior respectively.

RESULTS: Before taking Efalex, linolenic acid showed a significant reduction (71%), followed by docosahexaenoic acid (65%) and arachidonic acid (45%), while linoleic acid was the least affected PUFA (32%). After taking Efalex, 66% of autistic children showed clinical and biochemical improvement, linolenic acid and docosahexaenoic acid showed the highest levels after Efalex supplementation.

CONCLUSION: PUFA supplementation may play an important role in ameliorating the autistic behavior.

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

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

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!

A simple fish oil supplement may be the key to dramatically unlock the voices of children with speech and language disorders.

That’s the conclusion of a group of scientists who reviewed a study of nineteen youngsters suffering from various speech problems. The children, ranging in age from two years to eight years, were given a fish oil supplement containing a mixture of omega-3 and omega-6 essential fatty acids (EFAs). Speech-language pathologists who monitored the children reported significant improvements within just a few weeks. The improvements were noted not only in the children’s ability to talk, but also in their behavior, ability to focus, and in maintaining eye contact.

Now the scientists, brought together by the Cherab Foundation, a major nonprofit group for children with speech disorders, are calling for a large-scale clinical trial to validate these initial findings.

“The results were dramatic,” says developmental pediatrician Marilyn C. Agin, M.D., medical director of the New Jersey-based foundation, who also reported similar results in ten anecdotal cases. “They strongly suggest that EFA supplementation combined with speech and occupational therapy could become the treatment of choice in multifaceted communication disorders.”

Until now children with severe speech disorders such as apraxia, a neurologically-based condition, have required years of intensive one-on-one therapy-often with painfully slow progress. “But now, with EFA supplementation, the future for these children may be much brighter-and sooner rather than later,” says Lori L. Roth, M.S., CCC/SLP, a speech pathologist with the Cherab Foundation.

The amazing potential of EFA supplementation came to light when the nonprofit group’s president, Lisa Geng, used it with her three-year-old son, Tanner. After just three weeks his vocabulary exploded. “It was the breakthrough we had been praying for. It was incredible,” says Lisa.

Why does this supplementation work? The experts believe that the speech disorders are the result of a breakdown in communication between the brain and the muscles in the mouth, tongue and jaw that have to work together to produce speech. Essential fatty acids, especially the omega-3 DHA and the omega-6 fatty ARA, are highly necessary for brain development. Most children obtain them-during the most critical times of brain development-directly from their mothers while they are still in the womb and subsequently while being breast-fed. Any deficiency can result in permanent neurodevelopmental deficits in the growing infant.

“Therefore, essential fatty acid supplementation in neurodevelopmental speech disorders could correct a specific deficit in the speech center of the central nervous system,” says Robert Katz, Ph.D., Cherab’s director of EFA research.

The panel of experts who reviewed the study included scientists from the NIH, Johns Hopkins University, Kennedy Krieger Institute, University of Kansas, and Oxford University, England. They join a growing group of researchers who are heralding the benefits of essential fatty acid supplementation for a wide range of brain-related problems including depression, bipolar disorder, schizophrenia, attention deficit hyperactivity disorder, dyslexia, and even Alzheimer’s disease and autism.

(the following open label study was initiated due to one of our parents Nancy Goodman – I’ve shared many times the importance not in theory but in reality for the small amount of GLA which has very strong anti inflammatory properties which may enable the DHA and EPA to cross the blood brain barrier and get through the very small blood vessels of the brain)

Last month the FDA advised pregnant women and women of childbearing age who may become pregnant (as well as nursing mothers and young children) not to eat shark, swordfish, king mackerel and tilefish. These fish, said the FDA, may contain high levels of a mercury called methyl mercury that may harm an unborn baby’s developing nervous system. Some experts on the ABC television show 20/20 also advised against eating tuna, but the FDA rejected calls to put tuna on the do-not-eat list stressing that swordfish and shark have far higher levels of mercury.

As you’re probably aware mackerel and tuna contain significant quantities of the fatty acids DHA and EPA and are often the source of these nutrients manufactured in fish oil capsules.

It is quite understandable that many parents giving such supplements to help their children with ADHD, dyslexia and dyspraxia (or taking omega-3 for personal health reasons) should be alarmed by the contamination reports. It is a serious issue and before making any recommendations it is worth reviewing the history of the problem.

The Mad Cats of Minamata

The danger of mercury contamination was discovered in 1953 when fish, contaminated with mercury, first drove cats mad and then killed and maimed people in a fishing village in Minamata Bay, Japan.

Mercury is one of a group of substances called heavy metals. Other members of the group include selenium, chromium, cadmium, manganese and lead. Some of these heavy metals are essential in the diet (selenium, chromium and manganese), but all of them are toxic when taken in excessive amounts.

There are three forms of mercury that are used by industry––metallic mercury, organic mercury compounds and inorganic compounds. All forms of mercury are poisons but some are less dangerous than others are. The inorganic forms are the least dangerous and the organic forms (for example, methyl mercury) the most dangerous. Unfortunately, when industrial waste including inorganic mercury is discharged into rivers, lakes and the sea, the sediments including microorganisms and animal life convert it to the more toxic organic methyl mercury. This is what happened in Minamata Bay and is happening in contaminated lakes, estuaries and rivers worldwide today. And this is what concerns the FDA and the Environmental Protection Agency (EPA). The greatest risk is from the fish mentioned by the FDA because they are long-lived, larger fish that feed on smaller fish and therefore accumulate the highest levels of methyl mercury. These fish would be perfectly safe to eat if they lived in uncontaminated waters. Much of the tuna that’s caught lives in clean South Pacific waters.

So, What Should You Do?

Unfortunately, the very groups of people advised not to eat king mackerel and tuna are those with a great need for the fatty acids that these fish contain––anyone likely to get pregnant, moms-to-be, nursing mothers and young children. It is a great pity that the safety of these fish is in question, but the advice must be heeded and only uncontaminated fish consumed. The EPA has information on which places are contaminated and where fish is safe to eat.

Most people, of course, now choose to obtain the vital fatty acids by consuming fish oil supplements such as those mentioned in my book, “The LCP Solution: The Remarkable Nutritional Treatment for ADHD, Dyslexia and Dyspraxia.” Reputable manufacturers of fish oil supplements regularly monitor their products for heavy metal contamination, so one way to get around the problem is to take a fish oil supplement that is free from such contaminants.

How can you be sure? A large, reputable manufacturer is going to do everything in its power to ensure that its products are not contaminated. It is not worth its while running the commercial risk of putting such products into the marketplace. But be an aggressive consumer! Contact the manufacturer of your preferred fish oil supplement. Ask them directly if their product contains mercury and if they screen every batch of fish oil they use. If you obtain a quick response and an explanation of how they monitor their product you can be reassured of its safety.

Best wishes,
Dr. Jackie Stordy and Malcolm Nicholl

In the Cherab scientific reports you will find that most children benefited from the Omega 3 and Omega 6 formula called ProEFA. You can purchase Efalex-which is an Omega 3 Omega 6 formula similar to ProEFA at GNC. Efalex recommends a higher dosage of 4 to 8 capsules a day vs. the much lower dosage of 1 to 2 capsules a day recommendation of ProEFA. You can also purchase Ultimate Omega – an Omega 3 Omega 6 formula like ProEFA made by the same company.

There are many others manufacturers of EFAs out there, and most are inexpensive to try. You may wonder however, “How do you get ‘fish oil’ into a child?!!” or, “Can I give EFAs to my baby who’s showing signs of being a late talker?”

Some Online EFA (and other) Resources:

PRO EFA (Nordic Naturals) From Shop In Service For CHERAB
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. New ProEFA Jr., Kaufman Speech Kits, and other products that may help your child’s communication found here as well.

The Late Talker Book
This is the book co authored by Marilyn Agin MD, developmental pediatrician and Medical Director for NYC Early Intervention, Lisa Geng President and Founder of CHERAB Foundation which led the awareness and the professional anecdotal trials of EFAs use for apraxic/speech impaired children, Co Founder of Speechville, and parent of two late talkers, and Malcolm NIcholl, International Journalist and also Co Author of The LCP Solution book with Dr. Stordy. There is an entire chapter of The Late Talker devoted to information about EFAs including: the research, the stories from others, and the medical reasons as to how they may benefit your late talker child.

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.

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

Coromega
Coromega is an Omega-3 dietary supplement from fish oil, with DHA and EPA, and provides health benefits for the heart, joints, skin, and brain.

Efalex
Efamol Efalex with DHA contains necessary essential fatty acids necessary for brain function.

Equazen Eye Q
Equazen’s special interest is Omega 3 and Omega 6 long chain fatty acids. Our nutritional supplements are made from the highest-grade marine and botanical oils, and reflect the latest research in the field of lipid metabolism. As such, the main intention of this site is to provide you with quality information that supports the rationale behind our range.” Great Q and A section here. Please email us and let us know if this product helps your child with speech. EyeQ is not really known yet in the US.

DMG and TMG – Kirkmanlabs

Omega TEK EPA – Fatty Acid Complex

Flaxseed
Natures Path
Natural Ovens

Glutent And Casem Free Diet

Read about Carnosine or Carn-Aware and how this may help too