To Dr. Kane, from

[Guest guest]

Hi and Dr. Kane!

( -thanks for passing this on to Dr. Kane for me)

Hi Dr. Kane,

I remember the meeting you spoke at for Children's Apraxia Network (-

almost 2 years ago now? before we were CHERAB) It was that icy windy

snowy day and you were such a trooper to drive up all the way from

the South on a Monday night, and Dr. Agin came in from NYC as well to

meet with you and see your presentation -which was incredible (I'm

sure people would want to see you again since due to the weather

there were only about 50 people at that meeting)

It was also one of the meetings we were passing out the DHA Jr. and

ProEFA samples for the feedback trials to compare the two because

anecdotally I found and was seeing that the formula's that were fish

oil alone like DHA Jr. were not working for our children with

communication impairments overall for some reason, while the Efalex

was -and Michele who I was bugging about this -introduced ProEFA to me as " their

version of Efalex "

I know you like Primrose Oil more than Borage Oil -however it was you

that raised the anti inflammatory properties of the Borage Oil to me -

and it's either the Borage Oil or the higher EPA in the ProEFA vs the

Efalex that is so helping just about any child put on that particular

Nordic Naturals formula -even though I wish now the EPA was a bit

higher in the ProEFA as I discussed with the owner Michele. Michele

knew you would not be happy with the borage oil -but they believed it

better than Primrose Oil from their studies.

I'm pretty loyal to what helps my kids as most would be. I will be

the first to admit Efalex is a pretty stinky formula -and tasted

disgusting (two days to get that taste out of my mouth -yuck) -but

thank you God that it was the first one that I tried for Tanner -

because if I tried any of the ones I tried after (the " reject " fish

oils I called them-the ones that didn't work for Tanner -and that

included the " pure " DHA Jr.) I probably would have given up on the

whole fish oil thing and figured it didn't work. It never would have

occurred to me back then that " Oh -maybe there's not enough EPA "

Or " I better check to see if there is a small amount of GLA in here

or this probably won't work " They were all stinky fish oil to me -

and yet I also never at that point was aware that some brands could

be rancid -or worse as you first pointed out to me.

About Dr. AJR and Efalex comments, I really can not post all I know,

talked about and heard in each message. As you know things can be

taken out of context on a grouplist. Efalex is again a formula that

has literally changed the life of so many children -my son is one of

them. (Thank you Efalex!!) I don't think it's fair to put down

Efalex even if not every PhD loves it -it was the only EFA formula

out there three years ago -with or without EPA that I heard was

helping a few other apraxic children -not huge amounts of talk going

on back then because as you recall it was [OFF TOPIC] at another

apraxia list so after I posted so much about it they told us to start

another list which is how speechdiet list started. Efalex helped my

son Tanner, dramatically, as it states in Dr. Stordy and Malcolm

Nicholl's book The LCP Solution (except in the book it says three

weeks but in going over old posts it was actually two!) And by the

way -Dr. Stordy says Efalex does have EPA -but not near as high as

ProEFA.

And speaking of Dr. Stordy -I'm not sure of the exact relationship

between Dr. and Dr. Stordy -but I do know there is/was

some type of professional relationship. Dr. Stordy who as you know

is behind the Efalex, has been nice enough to answer many of our

questions so that's another reason in addition I won't allow Efalex

to be put down here unless one has proof of something negative. Dr.

Stordy states the Efalex formula now that is made by Nutricia is the

same as that made in the UK by Efamal -I'm not testing it to know -

and ProEFA works better for my son now anyway. I still will stand by

and recommend Efalex as a formula that works based on what I see and

hear. I put it up there with ProEFA and Eye Q based on anecdotal

reports as one of the top three. Good thing for anecdotal reports

because it'll be years till the truth is out to the public from the

research and the nonverbal preschoolers today may be teenagers by

then.

Also - I didn't write every word of the conversation -but Dr.

was very aware what the question was when we were talking

about supplementation of ProEFA before or after blood analysis. You

know me -not terribly well but enough to know I'm not shy with

getting my point across - the question was " would you give your

child ProEFA -or would you do the blood analysis first " My question

was not " should you feed your child a healthy diet that's high in

EFAs? " (!!) If you have a chance -ask her direct - Dr.

also seems the type not to be timid in her views.

I again am not questioning the validity of blood analysis for those

who do it, and there are children such as those prone to seizures -or

those few who Omega 3/6 EFAs don't seem to help, where I suggest the

blood analysis, even then not all do it as you know. For whatever

the reason -out of our group very few do take their child for blood

analysis before or during supplementation -and yet in spite of the

now huge amount of medical conditions involved in our group - almost

all communication impaired children appear to do well on the ProEFA

for some reason -even though again I think it would be good if the

EPA was a bit higher from what I'm now finding.

In some cases the new parents in our group are not even getting a

diagnosis -they " try " supplementation -and if it works (which it

typically does as we now know) they never find out the diagnosis at

times -no less go for blood work. There is a University Hospital in

NJ who called me to do a presentation to the neuro-sciences

department over what we are seeing in our group -and again, there is

much more to that than I can post here other than that there is

interest as you know in research in this area to learn why what we

are seeing (and hearing) is happening.

Again, as much as we know about how the body works -and you are

amazing at explaining so much about this -we do not yet completely

understand every aspect of the human brain, and with the pitiful

amount of research done on the speech and language area of the brain -

or apraxia (what's apraxia?) we are just now learning more and more

each day -so we of course do not know for a fact what is happening to

help stimulate speech in so many children -not just apraxic.

Dr. Kane -we would all love to hear your theory as to why it's

helping however!

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