Re: Hi Dr.Kane from !

[Guest guest]

Posted for Dr.Kane. Best,

Dear ,

In answer to your query regarding balance of essential fatty

acids let’s read over what Katz wrote:

Recently, the U.S.Food and Drug Administration approved the

addition of 100 mg/dayof DHA(Docosahexaenoic, an omega-3 EFA)

and 100 mg/day of ARA (arachidonic acid, an omega-6 EFA) that is

produced from GLA to infant formula. The purpose is to make infant

formulas more like breast milk.

So, giving the content of one ProEFA to an eight month old would

provide ABOUT the same amount of DHA and HALF THE ARA.

Since some of the linoleic acid from the borage oil will be

transformed by body into ARA, the total ARA will be close to the 100

mg/day dose. The 140 mg of EPA will be welcomed by the body.

I do not agree with ’s assessment nor would Carlson

(premier lipidresearcher on infancy). Infants do not efficiently

convert

linoleic to arachidonic and the amount of linoleic in a ProEFA is low.

The new addition of fatty acids to infant formula is that of

arachidonic

acid and DHA. Both of these are derived from algae.

Giving ProEFA to an infant is in my opinion unbalanced. Remember

that babies and young children are still laying down myelin. It is

critical to use a proper balance of essential fats in the process of

brain development. And it is impossible to EVER learn what infants

need if you do not test their lipids. We frequently test tiny babies

for their lipids. Ann Moser’s lab has a large number of tests come

though for babies because once development is not normal we

want to work as quickly as possible to find out what is abnormal

and correct it. If an infant is on a soy formula or eating a

restricted

diet then many of their essential fatty acids are not available in

the diet.

We have had many children with autism being given a supplement

that is extremely high in EPA. The results have been deeply troubling.

My greatest concern is the long term effect of such unbalanced

supplementation. An infant or tiny child is far more vulnerable

to unbalanced supplementation than an older person. Adults

who are given fish oil as you describe have already developed

and have a normal diet.Children with autism are often

on a restricted diet.Many have been told that giving their child

rice and potato and sugar and margarine is the way to improve

their child’s symptoms.You would not believe the abnormal

lipid results when amother falls prey to this ill advice. If you feed

your child a healthy normal diet and include healthy fats as

I mentioned then adding ProEFA or Balanced Omega Combination

or EyeQ would be a safe intervention in an older child.

I believe you mentioned at the conference that the dose many parents

were using 2 capsules of ProEFA. That is not a low dose, but rather

a high dose for a young child. And if the diet does not follow the

imbalance that is being produced by the supplement that is why

you would keep seeing variable results.

Dr. and the other EFA scientists who were at the First

Apraxia

Conference had never even SEEN Ann Moser’s incredible work with

lipid analysis until that day. No one has appreciated the profound

work

Ann has accomplished.This premier lipid researcher spends 9 hours

on every specimen she receives and runs two specimens of the

patient’s

blood through two different analyses. Because of Ann’s work children

have learned to walk and talk and 22 have now been relieved of the

diagnosis of autism. Patients with ALS, Parkinson’s, MS, epilepsy,

brain injury have also done remarkably well due to availability of

lipid testing.

Because the lipid researchers at the First Apraxia Conference had

no access to lipid testing and analysis and no experience or

information

on the clinical application of lipids they could not make an accurate

assessment of testing.To have access in the United States to lipid

testing as Ann Moser’s is a privilege. When I am in Europe and I

mention Ann’s name doctors almost bow down. With her analysis

we have been able to make a difference in the life outcome of

countless children.

Dr.Kane

[Guest guest]

Hi

I have to respond to you Dr. Kane since I have

supplemented both my children with pro-efa. My older

son Jack now 3 has been on pro-efa since Sept. " 01 "

with such a jump in his speech in such a short period

of time that it is no doubt to me that is was anything

else but pro-efa. I give him now 2 capsuls a day. My

younger son who is now 17 months has been on them

since 11 months and the reason I decided to supplement

him was that at 9 months he was saying Dada

consistently and babbling and during his 10th months

was very quiet not saying Dada anymore or babbling

nearly as much, so as you can imagine I was scared to

death that I had another child with apraxia. But gave

it a few weeks and inquired about the safty of Efa's

to an 11 month old.

I started to give them to him at 11 months and within

1 week was babbling consistintly again and saying more

than just dada. I don't know if he could have been

delayed in speech, wether it was just a fluke that he

just stopped talking but regardless he is using age

appropriate speech 2 word sentences etc.

I think it is confusing for parents to learn all there

is to know about balance and what our children need at

the time we decide about supplementation. In my case

our pediatrician when I asked him about giving them to

Jack was not very enthusiastic, told me it won't hurt

him but probably will not make a difference.

I never knew or thought to have either of my

children's lipids tested. I think we as parents do not

have enough support or knowledge from the people we

need it from our children's pediatrician. If I had

asked our ped. about testing for lipids he would have

said no way.

So I guess my question is I don't want to harm my

child in anyway, is testing for their lipids a test

you need, if the pre-efa's are working for my children

is it a " Don't try to fix it if it is not broken " type

situation. I guess I am wondering also if getting

their lipids tested and finding out what would be the

maximum benefit would actually have more of an effect

on them.

What do you think?

THanks for your time,

Sincerely,

Eileen mom to Jack 3 and 17 months

[Guest guest]

Is there anyway I can get Dr Kanes email address?

Thanks

[Guest guest]

Dear Dr. Kane,

I sat right next to the wonderful Carlson PhD at the First

Apraxia Conference at the main table and I myself spoke to her

personally quite a bit -as well as had the chance to hear her present

of course. So I heard her quite clear when she said to me that the

dosages that we are using are " so low " , and pretty clear to hear the

rest say the same. Again -I can't possibly go into every aspect of

everything on one post.

I have a great deal of respect for any professional who is interested

in helping our children -new to the area of communication impairments

and delays in pediatrics or not. How many clinical NIH studies have

been done on apraxic children by PhD's like you in the nutrition

area -or for that matter by MD's -or MD PhD's, or SLP PhDs? Please

tell us about all of them.

It's OK for you to not agree with MD's or PhD's remarks or theories

and state your opposing theories and beliefs in a nice way, however

to put them down based on their lack of experience in working with

apraxic children won't get us very far since at some point in order

for research to be done on apraxic children it will involve many new

to this area medical and scientific professionals.

As a parent who is not a PhD, MD, or SLP, I tend to go by observation

myself -as you know I say " the proof is in the pudding " which is a

scientific way of looking at things I picked up from working in the

toy industry that I find has worked as well in being a mom. Based on

what I've seen -quite honestly if I was pregnant I would supplement

myself and I would supplement my baby -just like my friend

(-Ross MD in Brick NJ) who not only recommends it to her

patients -but practices what she preaches -and even on her own

newborn (she didn't take that advice from Dr. Katz or me -she's an MD

that does it based on her own theories and she's always researching)

her son is doing amazing and was supplemented both through

breast milk and formula that had capsules of EFAs added -and then

added to baby food. 's whole family agrees with it even though

her husband who is a lawyer tends to be a bit more opposed to adding

the EFAs like you without " proof " which and I agree there is

no clinical proof. Other than her husband though -her mother in law

is a learning consultant and her father in law is a child

psychologist and just about everyone in 's family is an MD and

so other than Jay, they all agree with what she is doing with adding

supplements -and that was her decision as a parent -not as a

scientist or an MD. (and yes was also at the First Apraxia

Conference)

Being that a knowledgeable developmental pediatrician like Marilyn

Agin MD is now booked up till October due to her apraxia clients

which primarily came from her being nice enough to volunteer to

reach out and help us the parents, and other professionals, by

answering questions here on our list -there is an obvious need for

MD's in this area. I'm not sure how booked up your lab is for blood

analysis -but if you are proposing that all children with

communication challenges, or all babies which you implied -your Body

Bio lab will not be able to handle all those new clients either -and

how many other labs are out there? As far as testing new born babies

knowledgeable supplementation with EFAs -I hear it's about $800

dollars at the lab you run, which is not affordable to some and

insurance doesn't cover it for the most part. Of course if the

pediatrician believes it's necessary due to the child's medical

issues, parents should fight to get it done. For the rest however

it's up to each parent and they should not feel guilty if they choose

not to. Many of our parents feel guilty enough as to what caused the

apraxia or autism, etc. and what therapy is right. You are now

suggesting we should feel bad if we believe it's OK to supplement

without blood analysis by throwing in " what are the long term

effects " Shouldn't we worry about the long term effects as well of a

society that lives on fast food in polluted and high stress areas -

where a " healthy supplement " is Sunny Delight in orange flavor? Or

are you suggesting now that all children should have blood analysis

before supplementation with fish oil and that should be our main

concern even if our child's pediatrician who we consult before any

supplementation does not believe it necessary?! And even if our

child is doing amazing -so well that we no longer are on this list

because our child is talking and we are off doing regular parent

stuff?

Has anyone done long term studies of our grandmother's grandmothers

that were supplemented as children with cod liver oil? I had celiac

disease as a baby -so did my brother. Dyslexia and ADHD as well as

genius runs in my moms side of the family -so I really related to Dr.

Stordy and Malcolm Nicholl's book THE LCP SOLUTION. (My mom said

that if my youngest sister had celiac too it would have been a

record) If I had the celiac as bad as my brother I would have died -

I almost did anyway -and spent much of my young years in the

hospital. My mom started giving me cod liver oil as a child and that

happened to be around the time I stopped getting sick so much.

Coincidence? I also still get a stomach ache if I eat too much

saturated fat -not that I called it that before -I just knew if I ate

too many potato chips I'd feel sick. My body figured it out and I

happen to love fish -and many of the foods high in EFAs -and I feel

even better since supplementation of EFAs too.

When you speak of varied results that we are seeing, how many of our

posts or archives have you read? Which apraxia organizations are you

working close with, or which other grouplists? You must be speaking

about the moderate to dramatic positive changes we are seeing in one

to two weeks? Of going from nonverbal to babbling in days or a week -

or of going from babbling to words in days to weeks -or sentences in

days to months? Or are you speaking of the almost rare few parents

who see no changes on the Omega 3/6 formulas that work for most of

the rest of us?

I stand by the fact that in many ways as a parent of an apraxic child

we are still in the dark no matter what you say or any other PhD or

MD says. I do agree there are MD's and PhDs that are more

knowledgeable than others on the condition -however it's a condition

that has had very little clinical attention -so most of us as parents

understand some aspects of it more than the experts so they should

listen more to us the parents. We all should have respect for each

other and admit that it's impossible for any one person to be correct

all the time. We also should also admit that none of us completely

understand how every aspect of the brain works to know if all the

theories out there are 100% and just work together.

=====

[Guest guest]

Dear ,

It was not my intention to in any way offend anyone. No one has

my respect more than parents who have children with developmental

delays. They desperately seek for interventions to help their child

and

somehow, somewhere they know that help is out there. If researchers

cannot tell you what they know and parents cannot tell you their

experience then there is a block in communication and ultimately

children will not be reached. How wonderful that you have a forum

to discuss helping children-and with fatty acids. I have worked with

children and fatty acids for 21 years. What a delight to see parents

discussing this! What a change to see professionals interested in

working with children with delays with a nutritional intervention

such as essential fats. There was a time that they told you to just

take your child home and love them. Thank goodness we have moved

onto innovative and successful interventions.

I did not propose that every child be tested for lipids and I do

not own a laboratory. Insurance actually does often cover fatty acid

testing for children because the test is performed at a pediatric

institute.

Payment of services for lipid testing must be made at the time of

service,

and is reimbursed through an insurance company. The CPT code for

lipid testing is #82491. The cost of lipid testing is not $800, but

almost

one third that price. I have no attachment to profit to any lipid

testing or

supplementation of any nutrient.

What I did propose is that if an infant is developmentally delayed

that normally a pediatrician will order lab studies to determine if

the

infant has an abnormality. A lipid test should be added to that list

of tests in my opinion. The decision to do any testing is an

individual one. I would want to know what my child's lipid status

was before making a decision as how to supplement my child. But

ultimately, each parent must decide with their doctor what is

appropriate in regard to testing for their child. And no one should

EVER feel guilty about any decision that is made in regard to

their good intentions towards helping their child.

Should you supplement your child without using lipid testing? Of

course you should. Essential fatty acids are essential and should be

repleted every day. The point I was making however, is that I would

make sure that my child had all the essential fats available to them

and not just a few. These would include:

Cold pressed sunflower or safflower oil

Butter, cream, egg yolk, meat fat

Raw seeds (sunflower, pumpkin, sesame)

Ground flax seed

Whole body fish (sardines, Alaskan salmon) or pure fish oil

Primrose oil (or borage oil)

Hydrogenated fats, margarine, commercial dressing and mayonnaise

should be removed from the diet. These fats act like plastic in the

cell membrane.

I do think we have to stop and ask ourselves, whether Parents or

Professionals, why and exactly why something is working or not

working in regard to fatty acid supplementation. Let's look back over

the graph I supplied at the First Apraxia conference to see the

fatty acid content of the different supplements that are available.

What is different about ProEFA opposed to just using fish oil?

It has borage oil in it which contains nervonic and gamma

linolenic acid or GLA.

What is different about ProEFA opposed to Efalex?

It has EPA, while Efalex does not.

What is different about Nordic's ProEFA opposed to Balanced Omega

Combination and Eye-Q?

They have primrose rather than borage so there is no source of

Nervonic but GLA is present. The amount of EPA and DHA is much

lower in Balanced Omega Combination and Eye-Q.

Perhaps you would like to post the chart I made out for the

Conference which is fine if that would be helpful to parents.

, you sound upset by the tone of your email. I did not

intend to upset you. I was trying to clarify some of the

information you asked me about. My heart breaks for these

children because I know they can be helped if we put in the

right nutrients, the right foundation. Am I overzealous in my

attempt to help children? You bet I am. I apologize

if my desire to see children develop fully is overwhelming to

others.

You have the most beautiful little boys who have a most wonderful

mother. For you to get us together in that First Apraxia Conference

was a turning point in the history of science! It took a great deal of

work and you have made a difference in the lives of many,

many children whose parents now read your chat group and

have tried fatty acids whereas they may never have used

them before. THAT IS A MIRACLE.

God Bless You,

Kane, Ph.D.

The WellSpring Clinic

250 West Lancaster Avenue

Wayne, PA 19087

[Guest guest]

> Is there anyway I can get Dr Kanes email address?

> Thanks

>

> BESIRIUS@...

She doesn't have the time that I do, and I am behind in my mail

too, if I can help you, by going through some of her older posts, I

would be glad to try. She cannot keep up with list mail, that is when

I started sending her the ones that I thought that might interest her,

so she does read what some parents are having problems with and in

what areas. Best,