My update and some thoughts

[Guest guest]

My son, (3 1/2, apraxia) had a speech evaluation done by Children's

Specialized Hospital at the end of March. We just started the private

therapy two weeks.ago It took that long to get an opening. His therapist

did not believe it was the same child she saw 6 weeks ago. The Pro-EFA has

made such a difference. Here are some of the differences " we " have noticed.

- His vocabulary has expanded - it is near age approapiate for the first

time

- His sentences are increasing in length

- He is using adjectives and talking about imaginative things

- His OT mentioned he all of a sudden could draw a person with eyes and a

mouth, something we have been on for 9 months.

-increased intelligibility in one to two word utterances

The results were so dramatic, I decided to start one of my twins on the

Pro-EFA. Mandy just turned 2 on 5/18. She is has a speech delay, hypotonia

and sensory issues. She is a tiny little thing and she weighs only 20 lbs. I

was going to just give her the new formula Enfamil Lipil but she wouldn't

drink it. So, I started supplementing her 9 days ago and her speech has

taken off. She learned 20 new words and today she said her first two word

phrase " bye bus " as went off to school. Her articulation is still poor

but her therapists are just amazed!

BTW, has anyone seen the ads for Beechnut's new babyfood called First

Advantage? It is babyfood with DHA added.

So, here's my thoughts to those worried about supplementing with Pro-EFA. If

my daughter or son, were infants, say 9 months in age, they could possibly

ingesting more omega 3s if they were drinking Enfamil Lipil and eating

Beechnut First Advantage babyfood than they get from one capsule of Pro-EFA

daily. This is just my opinion but if it is safe enough for infants in their

formula and babyfood, it is safe enough for my two and three year old

children. Just my thoughts though.

Anyone have any thoughts?

Jeanette

mom to:

Becky 7

3

Meg & Mandy 2

[Guest guest]

Jeanette!!!

Wow this is amazing -now it's both your children and Damien's

children that could have been on PBS for the before and after if they

added this part too that the world could have seen first hand!!

(Dani -you did you start yet too? there still are the 2 other shows -

Joy?) I want you to know I emailed the producer for the PBS one with

your post too now, I had already sent them Damien's " 2 weeks and

blabbing away " , and just wrote in the subject " Another one that was

supposed to be for the before and after "

I know the documentary will be awesome even the way it is when it

airs next Fall, I just wish that they added the random before and

after too. I know we never met -but I felt like I wanted to cry I'm

so happy for you and your family, especially when I think of that

happy smiling picture of adorable little that you sent me to

send to the producers.

This is just so frustrating for me -what we are seeing here and that

right now the only " proof " we have about EFAs is anecdotal -and yet

it is making such a profound difference in so many of our lives. Let

me make one thing clear to all of you. I can not personally tell you

that I am a 100% believer in carnosine yet, because I myself have not

seen what happens in my own child and others like him when taken off,

and put back on -and if there are regressions, surges during those

times, etc. I'm looking forward however to learning more in this

area and from what I've read here and from the clinical trials, heard

from speaking to the one doctor behind the clinical trials, and seen

in my own son Tanner, I greatly suspect that the carnosine will also

prove to be valuable to our children -and I do recommend you all

explore this further with your child's doctor and by yourself on the

internet, etc. (http://www.google.com is my favorite search spot

online)

Outside of traditional ST and OT therapies for speech disorders like

apraxia, I also not 100% sure about all the other new therapies that

I find successful such as cranial sacral therapy, therapeutic listening, karate

and swimming, etc -even though I won't stop any of them and I also

believe they are worth looking into as well. There is not one doubt

in my mind however based on what I've seen over and over again that

somehow the formulas of ProEFA, Efalex and probably Eye Q (don't know

enough there since it's not in the US -but from the few in our group that use it

too) " in most

cases " are somehow passing the " blood brain barrier " as the one

parent said her neurologist wasn't convinced would happen with fatty

acids. This is because time after time -when the children that are

doing well -the parents at first are happy -thrilled. Then they

start to get spoiled I guess into thinking this would have happened

anyway and most at some point stop the Omega 3/6 EFA supplements -and

almost all the children regress noticeably and quickly -the rest of

the children that don't regress just " stop progressing so quick " -

every child that did respond to the EFAs to begin with however that

I've heard of, when put back on have another " surge " As doctor Hugo

Moser (Lorenzo's Oil) said at our First Apraxia Conference - " you need to begin

clinical research on this at once. Don't wait! What you are seeing

is happening so quick and this needs to be explored -you have an

amazing opportunity here! "

In addition to whoever proceeds with research being in my opinion

guaranteed of proof -this is also why I say to any producer that

calls us now -and Jeannette and many others in this group are aware

of this, that I don't care who they use -I am that confident that if

they randomly document a before and after the odds are you will see

something " amazing " in one to three weeks -typically not much longer

than that. (Marci who runs the NYC support group met the one group

of producers working on the PBS documentary who were going to use her

daughter as one of the before and after children until they decided

to " cut " that part out)

This is also the reason I'm skeptical about blood analysis and have

said more than once that " just because it's in the blood does not

mean it's getting to the small vessels of the brain where it's

needed -and perhaps the anti-inflammatory properties of the GLA

(Omega 6 -borage or primrose oil) is somehow enabling that to happen -

or why else would overall the DHA and EPA alone not be successful when so

many of us tried? And overall the GLA alone has anecdotally not

been successful either "

, you misunderstood me -there isn't much competitiveness in the

area of who is better than who at testing the blood -there is

competition in the area of understanding how the EFAs are helping,

especially with neurological conditions -where personally I believe

it important to have the input of neuro-medical professionals whether

they believe in this or not, and whether they have experience in

working with apraxic children or not. I believe any neurologist who

went to school to study how the brain works and how they can help

would be blown away if they really took the time to see what we are

seeing. Dr. Agin for example was never an alternative doctor -she now

recommends ProEFA, Efalex and all to all her patients, and when was interviewed

for PBS even used the words " may be some type of cure " based on what she has

seen. She sees the

same we see here -you can not argue with what we are seeing -and

hearing. And the fact that these same children regress when taken

off means there is something happening neurologically -and I don't

believe you need to go to medical school -nutritionist school or

blood analysis school to know that.

Again -I know for a fact that both Dr. Stordy and Dr.

J do not believe blood analysis to be important -outside

of research reasons -for the average parent. So the competition is

in beliefs of what is correct and important. Not only that but the

odds of improvement on just supplementing your child with a

communication impairment based on anecdotal reports here and in

support groups all over (where we know each other and are talking) is

quite high -sometimes as high as 10 out of 10 -at least 8 out of 10.

I happen to know from a neuro developmental medical doctor the odds

of improvement after blood analysis for the same type of child -do

you want me to post it here? I can -and you may know it's not as

high. So again -the proof is in the pudding.

Jeannette -I hope I can meet you and your family one day and thanks

for sharing -it's stories like yours, Damien's, and the so many like

it, that make my day, and make the hours I spend trying to help raise

awareness about how to help bring our children a voice worth it!!!

=====

[Guest guest]

, Don't you wonder why this surprises neurologists? Neurology

is the science of the brain, they are poorly trained in areas of

nutrition and probably just as much out of touch with gastroenterology.

What I would like to see is a double blind study done on oils.

Half the children are put on sunflower seeds, flax seeds, and

sesame seeds, and the other half put on borage oil, cod-liver oil

and primrose oil, and then lets see what happens.

Dr.Kane looks at all the essential fatty acids, making sure their

is balance of all the essentials. As long as I am keeping alot

of essential fats in this diet, he doing alright. The secret

to chicken soup is meat fat and butter, and maybe sodium too.

I think they created a whole mess when they started making

everything fat free, I think children need fats for growth

and development. But what they don't need is bad fats, the

oxygen highly processed oil in our food today.

Best,

[Guest guest]

, I don't know if you remember me when I first joined, but

I had said that I didn't know 'where we belonged'. At that time,

I had seen at least a hundred fatty acids tests that parents

had sent to me that were autistic and I would have to say

that it sure looked like some similarities. One thing that stood

out for me was their skewed levels were very high.

Now I have never seen one single fatty acid test on an apraxic

child, but I have been told that we don't fit in that category

either. In fact, I think my son had the most unusual highs and

lows, odd fatty acids that everyone else's child was within

the normal range. And I don't know if everyone's child's

EPA and DHA would shoot up as fast as my son's did, but I

do know that he was not getting those supplements until

two weeks prior to the blood draw. However, I do wish that

hadn't supplemented before he had the test done.

And I couldn't remember until last night what the carnosine

had done, I do believe that mailed you privately the results

of his response to carnosine. I think someone needs to study

further into the interaction of carnosine with histidine, because

histidine did up his language abilities, and carnosine was

running that same pathway, but without the irritability of

histidine. There was definitely more energy and endurance

on carnosine, that followed with an increase in language.

Only I think he might have just been burning it off too fast,

and I think too, that it worked better on an empty stomach.

My son eats a little all day long, so there was few times

where his stomach was empty, and I think that was our drawback

to using carnosine. Best,

[Guest guest]

,

I am curious about this Carnosine. I would like to try

it on Jack. Has anyone used it and seen results. Have

they used it after using pro-efa, with pro-efa? We

have seen wonderful results with the pro-efa as you

know with Jack and am very interested about it.

Thanks,

Eileen

--- kiddietalk <kiddietalk@...> wrote:

> Jeanette!!!