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

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

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