Discovery Of The Late Talker-Apraxia Protocol

Almost 20 years in the making, it’s time to validate what we know!

As a parent of a special needs child, we are always searching for a way to help.  If you are fortunate, there is at least one benign evidence-based effective treatment for your child’s condition.  However, if your child has a condition that is considered rare there may not be much or any research and this is when many of us start looking at integrative approaches.

My younger son Tanner was diagnosed in 1999 with “apraxia or dyspraxia same thing” as his SLP at the time said.  Apraxia is a neurologically based motor planning impairment that can affect any area of the body including speech, and it’s a condition nobody fully understands yet.

As an author of the book The Late Talker and the president and founder of the 501(c)3 Cherab Foundation I’ve learned so much since 1999 both from my own 2 late talker boys who overcame their multiple diagnoses and are today 21 and 23, but the main question I get is about fish oils.

I wanted to share a few things as to how I came up with the fish oil protocol I share here, and want it to be clear it took years to develop along with the help of thousands of other parent and professional members from the Cherab Foundation.  I’ll try to keep it short but want everyone to understand that the formula wasn’t just pulled out of a hat or handed to me (I wish)  It took a lot of hard work and trial and error, and I’ve also as you’ll read below had the opportunity to perfect the formula with thousands of others over close to twenty years and with the guidance of renowned experts in the area of fish oil research.  I’m sharing the following because it’s come to my attention there is someone out there claiming to have a protocol for apraxia and autism and while it doesn’t appear to be dangerous, it contains much information that goes against what is accurate for not just apraxia, but the essential fatty acids in general.

How I discovered fish oils in 1999

When my son Tanner was first diagnosed with apraxia in 1999 there was almost no information anywhere.  When I started a support group for apraxia back in 1999 literally SLPs would show up and argue with each other as to the possible existence of apraxia in a child.  Here is a front page article about our first support group meeting from the Children’s Specialized Hospital newsletter.

In frustration, I gave up a lot of sleep to search online for answers and found a study by a Dr. Jackyln Stordy about fish oils being used to help with ADHD, dyslexia, and dyspraxia.  I started Tanner on the formula she used in her research called Efalex.  As Dr. Stordy says, fish oils with the right formula have a success rate of what appears to be over 80 percent of the time.

This is a clip about my son Tanner from Dr. Stordy’s book The LCP Solution.

Fish oils alone with the right formula most often have amazing anecdotal feedback.  This is a clip about my son Tanner from Dr. Stordy’s book The LCP Solution.

Three-year-old Tanner, standing in the bathroom of his family’s New Jersey home picked up a pink comb, pointed to a yellow stripe that ran through it, and said, “Lellow.” It was the first ‘real’ word he had ever spoken and it came after just three weeks of supplementation. “I almost fell over,” says his delighted mother, Lisa Geng. “It was the breakthrough we had been waiting for. It was incredible.” Within a few days, Tanner’s vocabulary increased to seven words. Within five weeks, he had mastered twenty-two words.

Tanner, during his first year of life, had seemed like a normal, healthy baby and by the age of eleven months was babbling normally and saying “ma” and “da.” Then, after a bout of very high fever, he stopped talking. Photographs show an unsmiling two-year-old. “No matter how hard the photographers tried he just would not smile. He was lethargic,” says Lisa. Typically, everyone kept telling her that he was just a late talker, but Lisa and her family became increasingly concerned and pushed for a hearing and speech evaluation. Four months of speech therapy led to an official diagnosis of severe apraxia of speech. Tanner was two years, eight months old. During the four months of speech therapy, he had learned to say basic sounds such as “sh,” “ch,” “t,” and “s” with some prompting. He had learned how to blow bubbles and could move his mouth more than before. But he found it impossible to take the “ch” sound and put it together with the “oo” sound to make “choo.”… source

You’d believe with that type of incredible response with Efalex I would have just stuck to that.  But sometimes a store was out of stock, and mostly because at this point I didn’t understand the concept that not all fish oil is the same and they can have very different formulas as well as quality.  Each time I switched Tanner to a different brand of fish oil he’d regress and I didn’t understand why.  Those fish oils didn’t go to waste though, I would give the “reject” fish oils to my son Dakota as I knew they were healthy either way.  And I started to notice some improvements in Dakota who at this point had been diagnosed with ADHD and CAPD as well.

I was a member at that time of the only online support group for apraxia and shared about Tanner and fish oils.  My point was “maybe fish oils contain a nutrient needed by those with apraxia which is like vitamin C and scurvy”  After sharing about Tanner’s progress at this small support group online, other parents asked questions, went out and also purchased Efalex and had the same amazing results.  Instead of exciting this group’s moderator that we may be on to something, she began writing OFF TOPIC in any message that mentioned fish oils.  A few months later she told us to take our conversation elsewhere.

Around this time The Star-Ledger, a newspaper in NJ picked up the story from the Children’s Specialized Hospital and did a full page story called “An Advocate For A Little Known Disorder” about me and my son Tanner.  That story was picked up by Inside Edition

Inside Edition Segment on Apraxia from Cherab Foundation

As there was no support for apraxia that I could find, I started my first nonprofit with 2 other moms and we named it children’s apraxia network or CAN and we met in person and also started an online group at Yahoo.  I started a support group for our nonprofit on Yahoo to share meeting information and we had incredible speakers each month.  About a year later as the group of hundreds of us had so many members with teenage or young adult children it was clear apraxia wasn’t just a childhood disorder, so when the 501(c)3 Cherab Foundation was established we expanded to embrace all ages.

It was fortunate I started the nonprofit and online group to talk about fish oils because it wasn’t long after the Inside Edition segment on apraxia aired that instead of being embraced as an advocate for apraxia, I was kicked out of that small online apraxia support group for talking about fish oils “too much” by the woman who moderated the group.

At this point, however, our in person group started off large and just kept growing, with in some cases, people driving up to 6 hours just to come to one of our meetings.  We quickly had hundreds of members which climbed to thousands.  I started to think this apraxia thing wasn’t as rare as I thought, maybe people just don’t know about it?

Now that there was nobody to tell me I couldn’t talk about fish oils and that they were OFF TOPIC, I wanted to see if we could get anecdotal feedback through our group about fish oils and apraxia and got a few SLPs and MDs to help put together a survey.  But also needed to find a company to donate a months worth of fish oils for over 100 children who would be trying them.  At that point, like most new parents, I didn’t appreciate the differences between the formula and the quality of fish oils.

My phone bills were already high from running the nonprofit and didn’t know Dr. Stordy in the UK at that time, unfortunately, to see if she could have them donate Efalex -and as a toy inventor loved how Nordic Naturals tried to make their DHA Jr bottle so child-friendly with their little round strawberry flavored fish oils.

First Parent Feedback with a formula high in DHA

I spoke with the former wife of the owner of Nordic Naturals at that time, Michelle, and she agreed to donate.  Each parent got a 30 day supply of DHA Jr (a fish oil high in DHA/cod liver oil)  and gave their child one capsule a day.  The next month the results were dismal, to say the least.  Most had no change and the small amount of reported a mild improvement, that could have been from time, therapy, or even wishful thinking.  The fish oil skeptics in our group were saying, “I told you so” and felt validated, many were disappointed, and I was perplexed.  My theory of fish oils + apraxia =vitamin C + scurvy were proved wrong.  But what happened with Tanner and others was so amazing, how could it be this wrong?

How I discovered NN ProEFA 369 (literally?)

I had a follow-up conversation with Michelle from Nordic Naturals again and had to convey the terrible news how the parent feedback was a fail.  I had such high hopes that all would see the same results with DHA Jr that we all saw with Efalex, but Efalex appeared to be the only formula that was helping.  I let her know my son Tanner was back on his 9 capsules a day of Efalex (the dosage on the bottle read 2-3 capsules, 2-3 times a day) and that he had regressed so quickly on DHA Jr I switched back even before the month ended.   While on the phone with her I was reading the label differences and said “There is no primrose oil in your DHA Jr.  Maybe it’s the primrose oil that is helping?”  (primrose is an Omega 6 GLA which I later learned is a very strong anti-inflammatory) I also recall saying as yucky and smelly as Efalex may be, it worked so I had to stick to it sadly.

A few months later Michelle called me back saying they had a new formula to try a parent feedback with as it was a similar formula to Efalex they just developed, they named it ProEFA.  (the name changed to ProEFA 369 in 2017)   While Efalex had the Omega 6 GLA from primrose oil, Nordic Naturals used the Omega 6 GLA from borage seed oil.  Michelle explained to me that the GLA was a strong anti-inflammatory that “may enable the EPA and DHA to pass the blood-brain barrier”  Also in ProEFA unlike in Efalex the Omega 3 EPA was higher than the Omega 3 DHA.

To be honest, at this point I had tried so many formulas with Tanner and Efalex was the only one that “worked” so I wasn’t even going to switch Tanner to try it.  But agreed to arrange the parent feedback again.

Second Parent Feedback With Fish Oil Success  

Having an Omega 3 and Omega 6 formula similar to Efalax was key.  The new formula we tested contained per capsule.

• 148 mg EPA (Omega 3)
• 99 mg DHA (Omega 3)
• 35 mg GLA (Omega 6)

I not only arranged the parent feedback with the same survey in the US but also got the nonprofit Echo of Canada involved too.  Everyone got the same 30 day supply to give their child one capsule of the NN ProEFA a day, except this time there was much less enthusiasm.  Most didn’t expect to see anything.  I again didn’t even want to try the one capsule of NN ProEFA 369 and was afraid of stopping Tanner’s Efalex and seeing the poor little guy regress again.  But I tried it anyway, and so did many others, and the next month the results were nothing less than amazing.  Just about all of us had seen at the least moderate to dramatic results. The testimonies were just as I had experienced and read from others I shared Efalex with.  We were all as parents and professionals in the group very excited.  Even the skeptics were coming around, after all, this wasn’t hearsay on an online group.  We all knew each other and in many cases knew each other’s children.

I didn’t know at that time as I do now that what is on the bottle by FTC law can only say 1 or 2 capsules unless that exact formula had been used in research.  Or that most research in children is typically 2 teaspoons or 8 to 9 capsules a day.  So I had taken Tanner from 9 capsules a day of Efalex to one capsule of NN ProEFA 369 and he progressed!   On this page, you can hear Tanner at 4 years and 9 months old recite the 3 little pigs story -he had never talked that much before!

A note about dosage:  In research for children the average dosage is 2 teaspoons or 8 capsules a day, and for adults, it’s typically a tablespoon or more.  That may sound like a lot of fish oil, but historically our grandparent’s grandparents were giving a tablespoon of cod liver oil a day.

Higher EPA Is Better Than Higher DHA

The formula between Efalex and ProEFA 369 is similar, however, the primary difference is that ProEFA 369 has higher EPA to DHA with a small amount of borage seed oil (borage seed oil is an Omega 6 GLA), and Efalex is mainly a pure DHA formula as the EPA with a small amount of primrose oil (like borage seed oil, primrose is also an Omega 6 GLA)

What we learned with these 2 parent feedback with hundreds of parents is that cod liver oil, which is what DHA Jr is, doesn’t produce great results.  At least with a small dosage.  We learned that with a formula higher in DHA to EPA you need a much higher dosage of oils and even then the results are not that great.

Within the first year it was clear that even though my son was only 3 there were many with children that were teens or young adults so changed the nonprofit name to Cherab.

Presentation To The Neurology Department At UMDNJ

I was watching the movie Lorenzo’s Oil and when Lorenzo started to regress early on in the movie it struck me that he looked and sounded like he had apraxia.  I called some of the doctors in the group and asked, “Is it possible that apraxia which used to be rare has something to do with the myelin?” and explained why.  Around where we lived in NJ they discovered “black ooze” rising from a park which ended up being a “toxic cocktail” of “Concentrations of polychlorinated biphenyls, or PCBs, phenol, cadmium, chromium and lead ”  Around this time I wrote ‘Please Save The Silent Children”

I also wrote to our online group that phenol blocks in medicine block the signals, so is it possible that while we are pregnant that some of these toxins are crossing the placenta and affecting the development of the myelin.  Maybe not severe enough to show up on an MRI, but perhaps we don’t yet have the technology to see minor issues going on neurologically?  Well ends up it was read by someone at UMDNJ and apparently Dr. Xue Ming a neurologist and Ph.D. who studied under Dr. Hugo Moser was working on a study like this with cheek cells scrapings for children with autism and I was called in by their legal team because they wanted to know how I found out about this theory.  Um…Lorenzo’s Oil.  But what an incredible opportunity I had to talk to this amazing group of neurologists.  And even though she never put it in writing for me so I don’t know how to explain it, I asked Dr. Ming if myelinization takes months, whey are we seeing results within a day to 3 weeks?  Don’t quote me on this but there is a process that goes on prior to myelinization  -something about white matter that builds up first?

Today I am serving on a panel with the American Academy of Neurology as a parent/consumer advocate and my hope is that apraxia as a condition is embraced by the AAN and they can lead the way in research.  And with the name apraxia not childhoodapraxiaofspeech!  Remember the names Lorenzo’s Oil and Dr. Hugo Moser because they’ll come up again and are key.

Professional Anecdotal Therapeutic Use Of Fish Oils For Apraxia

As the months went on the testimonies for fish oils for children with apraxia and autism, grew closer to a thousand which led to the First Apraxia Conference in 2001.

The professionals at the First Apraxia Conference included the top researchers in PUFAs (polyunsaturated fatty acids) or to put it in simpler terms -fish oil researchers.  I was told it’s a small group, they all pretty much know each other.  They were all amazing though, and you can read about the conference here.

You may wonder why out of close to one thousand parents and hundreds who took the survey why the paper only is for 19 children.  Funny story actually.  Not funny haha unfortunately!  One of the PhDs assisting our nonprofit foundation with the professional anecdotal for fish oils being used as a therapeutic treatment for apraxia insisted the reports had to be filled out by a medical doctor, not an SLP or teacher.  We had parents in the US and Canada take the survey to their child’s neurologist or pediatrician to fill out the report and there were hundreds.  19 people didn’t follow directions and had the report filled out by the child’s SLP.  When the investigators started to contact the professionals to find out if they firsthand witnessed the progress in the children the doctors all said they had filled out the report based on the parent’s account, but that they didn’t see the child within that 30 days.  All those reports could not be used.  The only ones that were able to be used were the 19 parents who had their child’s SLP fill out the survey as they worked with the child daily or weekly.

Out of the hundreds of reports which would have gone in the trash, one of the moms from Cherab, Cindy Mustafa, created what we called a “Quilt of Hope” which was a beautiful multicolored wall of testimonials to how fish oils changed their child’s life.  In addition to the parents that attended the conference, all the professionals at the First Apraxia Conference got to read the hundreds of testimonials.

Our lead investigator was Capt R Hibbeln MD, Acting Chief of Section of Nutritional Neurosciences, Laboratory of Membrane Biophysics and Biochemistry,  at the National Institutes of Health, Bethesda, Maryland, USA.  A psychiatrist and lipid biochemist by training, Dr Hibbeln is one of the world’s leading experts on the importance of dietary fats for human brain development and function. His work is focused on translating basic neuroscience on the omega-3 essential fatty acids docosahexaenoic acid (DHA) and eicosapentaenoic acid (EPA) (found in fish and seafood) into direct clinical applications, and he has published more than 80 peer-reviewed scientific papers to date. His research interests range from severe pathological states, including suicide and psychosis, through depression and antisocial behavior, to normative personality in adulthood and early development. He believes that a substantial proportion of emotional distress in modern society might be reversed by adequate intakes of omega-3 fatty acids.  He is a primary collaborator in the Avon Longitudinal Study of Parents and Children, Bristol, UK, examining the residual effect of nutritional insufficiencies in pregnancy in childhood neurodevelopmental outcomes and relevant gene-nutrient interactions.

One of the expressions I learned and love from Dr. Hibbeln is “The brain responds to multiple stimuli”  To me that means if you have a child with apraxia, accurate diagnosis and appropriate speech and occupational therapy, including therapies to address any of the soft signs which would be diagnosed by a pediatric neurologist or developmental pediatrician are key, however nutrition also influences brain health as well.

Dr. Alex Richardson is who I learned the most about EPA from.  She is best known for her research into how nutrition (and particularly the essential fatty acids) can affect behavior, learning, and mood, although her work also involves several large-scale collaborative programmes that include studies of epidemiology, genetics, brain imaging, biochemistry, and nutrition as well as physiological and psychological functioning.  She had said to me during the conference that the UK was around 5 years ahead of the US in regards to PUFA research and while the US was focused on DHA, the UK had learned that higher EPA was more key for some reason.  During that conversation, she recommended even higher EPA for my ADHD son Dakota.

Remember I told you about the neurologist from UMDNJ that led the autism clinic at that time at UMDNJ Xue Ming, MD, PhD who studied under Dr. Hugo Moser?  Perhaps the most profound moment of the conference which we all remember vividly came from our keynote speaker, the World-Renowned neurologist Hugo Moser MD when he stood at the podium and after looking at our “Quilt of Hope” and hearing all our stories slammed his fist on the podium over and over while shouting, “Research needs to be done immediately!” This may be because it took 10 years for Lorenzo’s Oil to be validated.  He is the doctor that finally led the trials to validate the fish oils even though early on he had worked with the nonprofit that dismissed Lorenzo’s parents. Déjà vu with me being kicked out of a support group for apraxia for talking about fish oils too much.  Dr. Moser is not featured in a great way in the movie -but again he again is the one that ultimately led the trials to validate Lorenzo’s Oil.  As Lorenzo’s father is quoted saying, “Without Hugo’s tireless commitment to studying the efficacy of Lorenzo’s oil, we would still be lacking the scientific validation that has proven the oil prevents the onset of ALD symptoms,” said Augusto Odone, developer of Lorenzo’s Oil, father of the son who made the disease famous and President of The Myelin Project. “Through this journey, I found not only a brilliant partner in ALD research, but a dear friend whose support has been invaluable to our family all these years.”

From Kennedy Krieger Institute.

“Hugo Moser’s passing is a profound loss for the field of neurogenetics, the international adrenoleukodystrophy community, and all who had the privilege of working with this great man. As anyone who knew him could attest, he was far more than a dedicated faculty member at Kennedy Krieger; he was a friend and mentor to us all,” said Dr. Gary Goldstein, President of the Kennedy Krieger Institute. “His sole motivation during his 30-plus year tenure at the Kennedy Krieger Institute was to help those suffering. Amid the many appointments he held, papers he published, studies he led and awards he received, he never wavered from this commitment.”

Dr. Moser served as President of the Kennedy Krieger Institute from 1976-1988, and later went on to act as Director of the Neurogenetics Research Center at the Institute. Dr. Moser was also a University Professor of Neurology and Pediatrics at Johns Hopkins University. As a neurologist specializing in genetic disorders that involve the part of the cell called the peroxisome, Dr. Moser helped to identify the characteristic biochemical abnormalities and the gene mutations that cause each of the fifteen peroxisomal disorders. However, he is best known for his work in the most common of these disorders, ALD.

We all knew in our group that it was a high DHA formula that was used to treat ALD, but even though multiple time we’d try the high DHA formula, it’s an inferior formula for autism or apraxia in just about 100 percent of the cases.

Meeting Dr. Jacqueline Stordy

Through the Cherab Foundation, I organized a conference at the University of North Carolina School of Medicine for apraxia.  And while the conference was amazing in regards to bringing together a number of the SLPs that are behind methods to help apraxia, in regards to fish oils Dr. Jacqueline Stordy flew in from the UK to present, and one of our other speakers was Dr. Nolan Altman, chief of radiology at Miami Children’s Hospital.  Of course, Dr. Stordy presented about fish oils and how over 80 percent responded to fish oils, but Dr. Altman presented his study which found right brain dominance in late talker children.  As we all had a chance to speak together over lunch and dinner for 2 days, one of the proposals that Dr. Altman made was to find children who have never been supplemented and do a SPECT scan of their brain.  Then supplement them with the fish oil formula and provide another SPECT scan to see if there are changes.  He was looking to prove that fish oils are passing the blood-brain barrier.

Cherab Presents At Research Workshop on Fatty Acids in Neurodevelopmental Disorders’ St Anne’s College, Oxford, England 2001

Cherab was invited to present the findings from the First Apraxia Conference on September 22, 2001 ‘ Fatty Acids in Neurodevelopmental Disorders’ St Anne’s College, Oxford, England    The following is part of what was presented.  source

POST CONFERENCE STATEMENT

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 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.

The Late Talker Book St Martin’s Press

Even though my own son at the time was still in preschool, with all the questions I was getting about apraxia and fish oils I reached out to Malcolm Nicholl, an international journalist and coauthor of Dr. Stordy’s book The LCP Solution to propose we write a book.  I also asked one of my boy’s doctors, a neurodevelopmental pediatrician if she’d like to be a coauthor as well.  That book is called The Late Talker; What To Do If Your Child Isn’t Talking Yet.

There is a chapter in the book devoted to fish oils.  However, as the book was published in 2003, at the time of writing the book I didn’t know as much as I do today.

How I Discovered the 2 NN ProEFA 369 To 1 NN ProEPA Formula With Even Higher EPA To DHA

The formula I found best is made by mixing together 2 NN ProEFA 369 and 1 NN ProEPA, but you can create it using other brands.

• 695 mg EPA (Omega 3)
• 280 mg DHA (Omega 3)
• 70 mg GLA (Omega 6)

Pretty simple, exactly what I wrote to our old Cherab group at Yahoo 15 years ago

“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 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, when Glenn and the boys went to Boston to visit my new niece for the weekend when I couldn’t go this past January, not knowing, my husband started to give the ProEFA and ProEPA mix to Tanner as well  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 his neurologist, and watched, and keep in mind that Tanner was not in any private therapy during the weekend away.  In about a week there was progress in speed, recall and a 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 I waited to see if others also saw a surge -which it’s OK now -you guys can start posting what you saw.”

Because the higher EPA worked so well I got excited and tried bumping it up and found that wasn’t good for apraxia, but appeared to be better for ADHD.  Of course, all of us as parents try various formula, but I am today in regards to fish oils that aware that dosage is not as key as formula, and you always want a good quality oil.  The formula on this page is what the majority of us find the most amazing results with, and even with just one capsule of NN ProEFA 369.  There are a handful of parents that find even higher EPA to be better, or pure Omega 3, but even then higher EPA to DHA.  Since 1999 I only know of one parent who found higher DHA to work better for their child than higher EPA as a formula.

Cherab A Part Of A PBS Documentary About Fish Oils

I was contacted by a director who was doing a documentary about the evidence of fish oils which from my understanding the lead expert medical doctor behind it was Artemis Simopoulos, MD one of the leaders in research on the essential fatty acids.  Perhaps her most well-known publication is about the reduction in cardiovascular disease in the Eskimo population.  The documentary was made up of experts who had published peer-reviewed research about fish oil supplementation and it’s benefits to health.  I was interviewed along with one of the MDs that was involved with the Cherab Foundation and a few other parents and our children.  We were told by the documentary professionals that the “most compelling” part of the entire documentary was the part with us- the parents, because of the stories of how fish oils literally transformed our children and changed our lives.

Understandably, as we only had professional anecdotal about our results at this point, Dr. Simopoulos said she wanted our segment removed from the documentary because we did not have a high enough level of evidence.  And Capt R Hibbeln MD who was our lead investigator on our professional anecdotal said, “It would be a disservice to remove the results of the Cherab Foundation.”  Thank you, Dr. Hibbeln!  (who I would love to be our lead investigator to validate fish oils)

One point of interest was during the production I and others were questioned about the “negatives” or side effects of fish oils.  Wanting to present a balanced view they wanted to share cons as well as pros of supplementation.  They couldn’t find any, and I couldn’t share anything.  Even today, these are the only “side effects” reported.  They are temporary and not true side effects.  Note this does not include fish oils which have massive amounts of vitamin E or other vitamins added in.  Massive amounts of fat soluble vitamins can cause side effects.

A Recent Fish Oil Protocol For Apraxia By?

I’ve recently read about an unknown professional who is touting with numerous testimonials about a protocol for apraxia that essentially from what I understand consists of a fish oil high in DHA with no Omega 6 because Omega 6 is “inflammatory”.   I would have read it but you have to purchase his PDF for around 25 dollars, and I was told by one of the parents it’s a “quick read”  Amazon has my book The Late Talker for around ten dollars last I checked.

Fun fact about fish oil is that they are so easy to try.  Like me and thousands of others, you can compare higher EPA to higher DHA.  So the fact higher DHA is recommended and this isn’t for some condition I don’t know about (for close to 20 years now) I’m pretty shocked. But again, I’m encouraging anyone who stumbles across this new “protocol” to try it and compare it to this one.

Also, you don’t want to “eliminate” Omega 6 as you shouldn’t eliminate any essential nutrient.  The body requires all the essential nutrients and require a blend of Omega 3 to Omega 6 fatty acids.  The problem is for people that consume or feed their family processed “junk” foods they are getting too much Omega 6 and in those cases, you should look to reduce processed junk food which should lower the Omega 6.

Omega 6 is again an essential fatty acid meaning one needs to consume it daily.  Here’s one guideline amount “In typical adult females and males, 2 % of the total daily energy intake should be derived from omega-6 PUFA and 0.5 % from omega-3 PUFA. This corresponds to a daily intake of approximately 6 g/day (5 g omega-6 PUFA/day + 1 g omega-3 PUFA/day) for women and 8 g/day (6.4 g omega-6 PUFA/day + 1.6 g omega-3 PUFA/day) for men.” Source

“Omega-6 fatty acids are essential fatty acids. They are necessary for human health, but the body cannot make them. You have to get them through food. Along with omega-3 fatty acids, omega-6 fatty acids play a crucial role in brain function, and normal growth and development. As a type of polyunsaturated fatty acid (PUFA), omega-6s help stimulate skin and hair growth, maintain bone health, regulate metabolism, and maintain the reproductive system.

A healthy diet contains a balance of omega-3 and omega-6 fatty acids. Omega-3 fatty acids help reduce inflammation, and some omega-6 fatty acids tend to promote inflammation. In fact, some studies suggest that elevated intakes of omega-6 fatty acids may play a role in complex regional pain syndrome. The typical American diet tends to contain 14 to 25 times more omega-6 fatty acids than omega-3 fatty acids.

The Mediterranean diet, on the other hand, has a healthier balance between omega-3 and omega-6 fatty acids. Studies show that people who follow a Mediterranean-style diet are less likely to develop heart disease. The Mediterranean diet does not include much meat (which is high in omega-6 fatty acids, though grass fed beef has a more favorable omega-3 to omega-6 fatty acid ratio), and emphasizes foods rich in omega-3 fatty acids, including whole grains, fresh fruits and vegetables, fish, olive oil, garlic, as well as moderate wine consumption.

There are several different types of omega-6 fatty acids, and not all promote inflammation. Most omega-6 fatty acids in the diet come from vegetable oils, such as linoleic acid (LA), not to be confused with alpha-linolenic acid (ALA), which is an omega-3 fatty acid. Linoleic acid is converted to gamma-linolenic acid (GLA) in the body. It can then break down further to arachidonic acid (AA). GLA is found in several plant-based oils, including evening primrose oil (EPO), borage oil, and black currant seed oil.

GLA may actually reduce inflammation. Much of the GLA taken as a supplement is converted to a substance called DGLA that fights inflammation. Having enough of certain nutrients in the body (including magnesium, zinc, and vitamins C, B3, and B6) helps promote the conversion of GLA to DGLA.”

Dietary Sources

For general health, there should be a balance between omega-6 and omega-3 fatty acids. The ratio should be in the range of 2:1 to 4:1, omega-6 to omega-3, and some health educators advocate even lower ratios. Omega-6 fatty acids can be found in sunflower, safflower, soy, sesame, and corn oils. The average diet provides plenty of omega-6 fatty acids, so supplements are usually not necessary. People with specific conditions, such as eczema, psoriasis, arthritis, diabetes, or breast tenderness (mastalgia) may want to ask their doctors about taking omega-6 supplements. source

The claim that all Omega 6 are inflammatory is also untrue.  GLA which is an Omega 6 is a well-known anti-inflammatory.

GLA is an Omega 6 Anti-Inflammatory Nutrient

A recent review underscores the role of the fatty acid gamma linolenic acid (GLA) in modulating the inflammatory response (1). GLA has gained recognition over the last few decades for its anti-inflammatory and anti-cancer actions. Some key findings from controlled clinical trials include:

• • In arthritics, several trials report that GLA reduced inflammation, symptoms, and the requirement for NSAIDs

• • In inflammatory dry eye, GLA improved symptoms and reduced inflammation; in PRK patients, GLA relieved symptoms, and increased tear production and clearance; in Sjögren’s patients, GLA eased ocular discomfort by reducing inflammation and increasing tear content of PGE1

• • In diabetics, GLA improved nerve conduction velocity leading to improved blood flow and reduced tingling of extremities

• • In patients with acute lung injury, GLA along with EPA improved gaseous exchange

• • In breast cancer patients, GLA improved the effectiveness of tamoxifen, reduced side-effects, and hastened therapeutic response

• In uremic pruiritis, a common problem in hemodialysis patients, topically applied GLA relieved symptoms

Warning from Nordic Naturals

The professional line of Nordic Naturals is the preferred line by most.  You can only purchase the professional line at an authorized distributor online such as http://www.speech411.com or https://getiqed.com/collections/nordic-naturals-professional or from a healthcare professional. Very few online sites are authorized to sell the professional line even though you can find it all over, for example on Amazon.  There has been a rise in fraudulent sellers including on Amazon.  Don’t purchase the professional line of Nordic Naturals at Amazon as nobody selling there is authorized to sell there.  The issue with that isn’t just buying a product that wasn’t authorized to be sold on a particular website.  Amazon has a problem with fraudulent sellers mainly from China (see some of the references below) and this problem is not just limited to fish oils, and it’s not just limited to Amazon.   Nordic Naturals has hired a company to help them as they purchased some of the bottles or NN ProEFA 369 sold on Amazon and some were packed with cotton. They do not pack their fish oils with cotton which means you do not know what is in those capsules, or where they were packed.  As you can see from the links below at times the product’s exact description and sometimes reviews all look legitimate.  When a product is counterfeit however and there are side effects or injuries,  the customer and the actual manufacturer are the ones that suffer. Example of how this is not just a fish oil issue

I do know fish oil testimonies can sound like a miracle, can sound “too good to be true” and can be amazing, but trust me there is a great deal of science behind fish oils -and the more you learn about them, and nutrition and the human body in general, the more you realize you don’t know!

This is a page called “elementary introduction to fish oil” written by the one Ph.D. Dr. Katz who helped us with the professional anecdotal survey for the First Apraxia Conference may help you understand how complex fish oils can be.  Good news is you don’t always have to understand everything about fish oils or healthy nutrition to help your child.  Just start by being a savvy consumer and be aware that not everyone will be sharing information for free to help you help your child.

I believe I’m like most parents in wanting to try various formulas.  And that’s great.  Fish oils are so easy to try and results are typically within a day to 3 weeks.   I share the formula that works for most, and through the past 18 years tens of thousands of parents have tried and continue to try higher EPA, higher DHA, pure Omega 3, higher GLA (omega 6) etc.  I encourage everyone to explore the various formulas and am confident this formula (not name brand) is the one that will work for the majority with apraxia and autism.  I’m hoping from sharing what I did above you understand why.

Honey, Pass the Prebiotics

This new protocol also recommends inulin -which is a prebiotic, like honey as I blogged about on this page.  You could serve your child his fish oil with a spoonful of honey.  I don’t think it will help but it can’t hurt.  Unless someone compares as I did with and without prebiotic, they won’t know.  I’ve been giving my boys prebiotics for years and while they are healthy notice no difference therapeutically.  We mostly stick to food sources of both prebiotics but I use the following blend based on the recommendations in Dr. Gundry’s book The Plant Paradox to help “Feed and encourage the growth of beneficial bacteria naturally present in the gut.”  Steven Gundry MD is a cardiologist and surgeon as well as now best-selling author who has really put a focus on inulin in the news.  Here is one of his articles about prebiotics including inulin.

• Bi2Muno Prebiotic Food Supplement by Bimuno
• NOW Foods Inulin Prebiotic
• Heather’s Tummy Fiber Organic Acacia Senegal

Again I don’t see this helping therapeutically from what I’ve seen however I do believe it may be healthy.  So that blend of prebiotics and dark chocolate were my 2 takeaways from Dr. Gundry’s book. (by the way, the Plant Paradox is a hardcover book written by Steven Gundry MD

If you are looking for a healthy diet for your child with apraxia or autism why not the Mediterranean diet which has so much evidence to support it.  Here are five studies.  Or try the Feingold diet,

If you have a child with special needs become an educated consumer and read labels.  Search for food that is tested free of heavy metals, hormones, pesticides and herbicides, stimulants, preservatives, genetically modified ingredients or synthetic contaminants.   Consider adding ayurvedic foods that have so much research behind them for supporting brain and metabolic functioning and have been used for thousands of years like Turmeric, Amalaki, Haritaki, Gymnema, Green Tea, Guggul, Cocoa, Cinnamon, and Cayenne Pepper.   However again check for heavy metals in particular, don’t just look for “organic” which just means free of GMO, herbicides and pesticides and be aware that organic produce has at times been found to be higher in heavy metals than regular produce due to farming methods.

And from the first peer reviewed published study

“Results: Ninety-two percent of the survey respondents reported positive behavioral or physical changes when IQed formula was added to the diet, with most (64%) reporting positive changes within the first 2 wk. Difficulty with speech and communication was the highest reported area of difficulty for this population, afflicting 83.8% of respondents. After supplementation, expressive speech improved for 85.7% of the participants with the increased vocalizations (sounds, words) factor showing the highest observed improvement (88.1%) among all speech/communication factors combined. In all other categories, more than 67% of the survey takers reported improvements in all factors: speech (77.6%), oral motor skills (63.2%), receptive ability (69.6%), focus (65.1%), motor planning (77.6%), mood (62.3%), social skills (59.3%), and physical/behavioral health (47.3%), with any adverse effects reported in less than 1%.

Conclusion: Consumers reported improvements in symptoms by use of a blended vitamin and mineral product (IQed Smart Nutrition composition). The implication for this study is to further research on alternative modalities of treatments for ASD and ASD-type conditions using natural food products, vitamin and mineral supplements, and Ayurvedic and botanical ingredients.”

Microbiome The Key To The Protocol Of The Future?

How Bacteria Rule Over Our Body Your Body (Funded by the Bill and Melinda Gates Foundation)

Food changes gut bacteria, or our microbiome, as quickly as a day.  And our microbiome is key because that is what we are made up of.  Don’t watch the following while eating -because the microbiome in addition to being comprised of communities of symbiotic, commensal and pathogenic bacteria, fungi, and viruses, also includes parasites!

I do believe nutrition and the microbiome are key, and it’s an exciting area of exploration still in its infancy that scientists are still learning about.  For those interested, I highly recommend a free course from Coursera, “Gut Check, Exploring the Microbiome” I took this course when it first came out and have recommended it to the Cherab support group a few times now.

For now, outside of the evidence, wise to stick to common sense, and those methods that are benign, and healthy.  If you read something you are curious about and it looks harmless (like trying a formula higher in DHA with no GLA and adding some honey or some other prebiotic) try it with your child.  Don’t “eliminate” an essential nutrient like Omega 6 -again just look to eliminate or greatly reduce processed junk foods.  In general elimination diets can cause more problems, especially in growing children.

Good nutrition is always important, and also ensuring your child consumes all their essential nutrients daily,  and perhaps that is one of the reasons we’ve had our best results with the addition IQed, which is a patented nutritional composition.   The foods in all natural IQed are known to support healthy brain, metabolic and immune function and there is hope there will be more about IQed soon.  IQed is superior to anything like it out there, but if you wanted to try a different meal supplement you can.  The IQed nutritional composition is currently in research and we just had our first peer reviewed paper published which you can read the abstract here. https://www.ncbi.nlm.nih.gov/pubmed/32088673

My Apraxic Son Tanner Today

This is a letter I wrote to myself when Tanner was 3 years old from when he graduated from HS

Tanner is currently in college with a major in education and a goal to go on to law school for special ed law to help advocate for those like him.  You can see more of his background including from when he was younger here.

Angel Donors Needed

We clearly don’t have lack of evidence after tens of thousands of families almost 20 years, our issue is lack of funding for clinical validation with even just 200 children.

Through the Cherab Foundation, we have been outreaching as a 100 percent volunteer-based 501(c)3 nonprofit for close to 20 years.  We are currently seeking to raise 250 thousand to validate fish oils to complete the study proposed by the experts from the First Apraxia Conference.  As you can see on this link we have a number of other wonderful projects including a multimedia project and crowdFunnit and would be grateful for any donation.  It’s clear that we have to validate what we know about fish oils to protect others from false or in some cases (as in the case of a fish oil with high vitamin e) dangerous information.  Thank you for any donation.

GLA- an anti-inflammatory Omega 6 fatty acid references

1. Kapoor R, et al. Gamma Linolenic Acid: An anti-inflammatory omega-6 fatty acid (Review) Curr Pharm Biotech 7:531-34, 2006.
2. Wu D, et al. Effect of dietary supplementation with black currant seed oil on the immune response of healthy elderly subjects. Am J Clin Nutr 70: 536-543, 1999.
3. van der Merwe, et al. The effect of gamma-linolenic acid, an in vitro cytostatic substance contained in evening primrose oil, on primary liver cancer. A double- blind placebo controlled trial. Prostaglandins Leukot Essent Fatty Acids 40:199-202, 1992.
4. Zurier RB, et al. Gamma-linolenic acid treatment of rheumatoid arthritis. A randomized, placebo-controlled trial. Arthritis Rheum39:1808-17, 1996.
5. Keen H, et al. Treatment of diabetic neuropathy with gamma-linolenic acid. The gamma-Linolenic Acid Multicenter Trial Group. Diabetes Care 16:8-15, 1993.
6. Physicians’ Desk Reference for Nutritional Supplements, 1st Edition, ISBN 1-56363-364-7, p. 173.
7. Chilton-Lopez T, et al. Metabolism of GLA in human neutrophils. J Immunol 156:2941-47, 1996.
8. Johnson M, et al. Dietary supplementation with GLA alters fatty acid content and eicosanoid production in healthy humans. J Nutr 127:1435-44, 1997.
9. Ziboh VA, et al. Dose-response effects of dietary GLA-enriched oils on human polymorphonuclear-neutrophil biosynthesis of leukotriene B4. Am J Clin Nutr 55:39-45, 1992.
10. Barham JB, et al. Addition of eicosapentaenoic acid to gamma-linolenic acid-supplemented diets prevents serum arachidonic acid accumulation in humans. J Nutr 130:1925-31, 2000.
11. Laidlaw M, et al. Effects of supplementation with fish oil-derived n-3 fatty acids and gamma-linolenic acid on circulating plasma lipid profiles in women. Am J Clin Nutr 77:37-42, 2003.
12. Burdge G, et al. Alpha linolenic metabolism in adult humans. Eur J Lipid Sci Tech 107:426-39, 205, 2005.
13. Wang C, et al. n-3 Fatty acids from fish or fish-oil supplements, but not alpha-linolenic acid, benefit cardiovascular disease outcomes in primary- and secondary-prevention studies: a systematic review. Am J of Clin Nutr 84:5-17, 2006.

“PICKY EATER” TEEN LOSES VISION AND HEARING DUE TO JUNK FOOD DIET