Re: How do you know how much EFA and EPA to give

[Guest guest]

Hi Tina,

I have definitely seen posts from parents who have had some kind of

EFA blood test (lipid panel????) to determine where specifically the

deficiencies are. Then the doctor gave them a " custom blend " EFA

that contains exactly what they needed. Parents reported much

better results on the custom formulas. Testing was repeated

periodically and the custom supplement was adjusted accordingly.

The big catch is...I think it was on another board that dealt more

with autism than apraxia. The other thing is that maybe with our

apraxic kids they need to supplement more than just to make up for

deficiencies. I'm sorry I don't know for sure what the test is

called! Does anyone else know more about it?

Kerri

>

> I had Amber on EFA awhile ago but never saw any progress.

However, we

> only did two capsules in the morning and never increased from

there.

> She also had some diarhea issues so I stopped giving her the EFA

(she

> has no allergies to shellfish so I don't think it was an allergy).

>

> Now I am reading how much and give their children and

I am

> beginning to think I just wasn't giving Amber enough.

>

> My question is, are there any bloodtests to determine what our

children

> are deficient in? I would have no idea what mix she would need

and

> when to start the EPA, etc.

>

> I have been searching the archives but from what I found, it looks

like

> we just need to experiment until we find the right mix. I was

hoping

> for something a little more concrete.

>

> Thanks

>

> Tina and Amber

>

[Guest guest]

thanks Kerri. I guess I will start her again on the one capsule and

slowly work our way up. Last time I just assumed she was one of

those who wouldn't be helped by the EFA but I never went beyond the

two capsules, nor did I ever start a separate EPA (but the ProEFA has

EPA so I am still confused on that point). I guess I will just need

to do some more research on the dosing, when to add EPA, etc. I wish

I had realized then that people were giving much higher doses to see

the positive results that everyone was posting about.

Thanks again!

> >

> > I had Amber on EFA awhile ago but never saw any progress.

> However, we

> > only did two capsules in the morning and never increased from

> there.

> > She also had some diarhea issues so I stopped giving her the EFA

> (she

> > has no allergies to shellfish so I don't think it was an allergy).

> >

> > Now I am reading how much and give their children

and

> I am

> > beginning to think I just wasn't giving Amber enough.

> >

> > My question is, are there any bloodtests to determine what our

> children

> > are deficient in? I would have no idea what mix she would need

> and

> > when to start the EPA, etc.

> >

> > I have been searching the archives but from what I found, it

looks

> like

> > we just need to experiment until we find the right mix. I was

> hoping

> > for something a little more concrete.

> >

> > Thanks

> >

> > Tina and Amber

> >

>

[Guest guest]

Kerri for apraxia the lipid testing last I checked was found to be

50% successful by those neuroMDs I know who 'used' to recommend it

prior to supplementation. Most parents just give their child fish

oil and see what happens -but some wanted to do blood analysis first

to I guess scientifically know what exactly their child needs. In

theory that probably seems like a great idea. Reality and theory

don't always agree and this is an example of that when the correct

formula of EFAs are used.

I'm sure in the other group they just don't know which " fish oil "

formula is better than another. Most people think fish oil is fish

oil, know I used to. Most people who come here from the autism

groups used to have their child on cod liver oil, and don't even

know the difference between cod liver oil and fish oil that's not

from the liver of the fish, no less fish oil formulas that have

Omega 6 added, or higher EPA, etc..

In this group where people have learned before they started their

child the right formula of EFAs from either this group or their

child's MD -just using that right formula has around an 85 to 95%

success rate in areas where there are lots of apraxic children (like

NJ, Ohio, Texas, etc.)

And Amber, how long did you have your child on the two ProEFAs? I'm

guessing if you stopped because of loose stools you didn't keep her

on past a few days to a week because it takes that long at times for

that stage to pass. (mild loose stools that is -they are not severe

and most don't stop due to it) Then again, if your child was on the

EFAs for a few months and you saw nothing at 2 a day -

EFAs 'probably' won't work at the increased dosage either. I hope

they would but in the past even if the dosage was too low you'd

still see some surges and improvements out of the usual, just not as

dramatic as when it's the higher dosage. With fish oil typically

you notice the changes fairly quick -a day to three weeks for most.

And Amber, if the EFAs don't work -let us know where you live

(state, country) and also let us know if you know lots of other

children with apraxia around you.

There is a percentage of children who would have had apraxia anyway,

probably for genetic or other reasons then the majority of children

in the alarmingly fast-rising group who have this previously rare

disorder.

When will the EFAs probably work? If you have a child that has

apraxia and nobody has a clue why (no history of it in the family)

and especially if you know personally or through your child's SLP at

least two other parents who have apraxic children in your

neighborhood. In that case stock up on those Omega 3/6 fish oils

like ProEFA, because the high chances are no matter what dosage and

even as low as one capsule a day (I know this because that's where

most of us used to start...that low and we all saw surges) and

whether you spend the money on blood analysis or not -you'll see the

surges and so will everyone else!

The following is an archive on this:

Re: carnosine

may want to keep an open mind regarding blood testing as the

way to know correct levels of Omegas at least.

(and to date still have not done blood testing on either of my boys)

The following archive may answer why*

*Dr. AJ who I speak of below is now behind

www.durhamtrial.org

From: " kiddietalk " <kiddietalk@...>

Date: Sat May 14, 2005 7:05 am

Subject: Re: Re-adding Pro-EFA kiddietalk

Hi Laurel,

When the MD diagnosed Evan as " Receptive-Expressive Language

Disorder " what methods were used for testing to know there

were " receptive " delays in addition to expressive delays? Does Evan

(on the oils at least) know how to follow 2 and 3 part commands

like " go get your teddy and bring him to me " or " grab your sneakers

and your sweater and hurry to the car or we are going to be late! "

I like to give children the benefit of the doubt and 'not' use the

word " receptive " or " cognitive " delayed -unless you seek second

opinions and know for sure. Those words easily change over the

years -and 'not' for the better. Know if they are correct to use

right from the start -and make sure that only nonverbal testing is

used for verbal disabled children or it's a violation of their civil

rights and can be filed as a complaint with the Office of Civil

Rights.

(Please let me know if any of you are at that point lisa@... )

Laurel once a child is up to two capsules of ProEFA, there are no

reasons I know of not to go back to the two capsules if you stop and

want to start again. Perhaps your child however has special dietary

needs you are following from an MD. Just curious too. Does your

child's MD know that each time he diagnosed your child it differed

depending upon whether he was on the oil therapy? That is what is

always posted here -a child on the oils will no longer present all

the symptoms of his or her diagnosis. Apraxic children for example

no longer fit the classic profile of apraxia....but doesn't mean

they no longer need speech therapy! The oils just help to

accelerate the progress.

One or two capsules of ProEFA (fish and borage oil with a 5/1 ratio

of Omega 3/DHA and EPA, over the Omega 6/GLA) are

considered " extremely conservative dosages of fish oils " by all the

professionals that spoke at the First Apraxia Conference

http://www.cherab.org/news/scientific.html

To give you an idea -one capsule of ProEFA is about equivalent to

the dosage the FDA approved for infant formula.

When we began fish oil therapy through CHERAB, we had hundreds of

members that all knew each other and knew each other's children.

Were there some that did blood analysis and waited to begin EFAs

until after a host of other complicated nutritional supplements were

given to the child? Yes. And in those cases there was a 50%

success rate of the other stuff working. For those of us however

that 'just gave the child fish oils " we had closer to a 90% success

rate.

One exception to this...If EFAs 'don't' work -which is the rare

situation from what we've seen anyway -then perhaps that child needs

other supplements to help digest the essential fatty acids properly.

There's a very old expression " The Proof Is In The Pudding " which I

love. If you try EFAs and they work...then that's all you need to

know unless they don't work, or work well enough.

As I posted once -I was standing next to Suzanne Smolyar who went

the blood analysis route for her 5 year old daughter 'after'

the ProEFA worked for her. Suzanne was talking to Dr. AJ

about her daughter's blood analysis results. I said excuse me to

both and asked " Dr. , if it was your child who is a child

like those of ours in this group with a speech impairment or ADHD or

whatever -and not for research, would you do blood analysis before

you supplemented with fish oil...or...would you just supplement your

child with the fish oils? " She (again) made a face like " you're

kidding, right? " squinting her eyes a bit with a smile and said " I'd

just give him the fish oils. "

Here's just one of many articles about the most recent study on EFAs

that Dr. AJ who spoke at the First Apraxia Conference was

behind

Can fish oil supplements really boost your brain power? Get the

lowdown:

http://www.gm.tv/index.cfm?articleid=14487

And...here's just one archive below as to why I'm not a huge

believer in blood analysis. It obviously has some major flaws due

to the blood brain barrier.

This story again was based on a time when we all knew each other in

person as a large group from mainly 1999 to 2003. When people post

here you don't know what's the reality for the group -you do when

you all know each other in person as a group.

~~~~~~~~~~~start of archive

Unless we understand what is going on in our children and can make

sure there is proper diagnosis/therapies for each -which we don't -

and we understand what all the many various supplements are doing to

help or not help, I'm not a huge believer of blood analysis for

neurological conditions. This is why I choose to stick to those

therapies/treatments/supplements I know are benign. I will add to

that -unless there are medical reasons.

My reasons on the blood analysis stem from EFAs due to another

scientist/mathematician/mom in our group -former CHERAB VP Suzanne

Smolyar who is now attending medical school to study EFAs due to her

daughter 's amazing reactions on EFAs.

" From: Suzanne Smolyar

Date: Wed Mar 21, 2001 2:36 pm

Subject: RE: [ ] progress

Hi Gloria,

I wanted to say that I know exactly how you feel. Last night at the

table, 's brother (Ari 6.8) began to speak while was

trying to say something, so she looked at Ari and said in a loud and

affirmative tone " Shut up Ari, Shut up " . We were so excited and

overjoyed at her using that phrase - we forgot to explain to her

that it was inappropriate to use at the table and to her family

members. We just thought it was golden -just like you did.

Here is some background from one of my previous posts that will tell

you why this is so exciting .

" I am a mother of a beautiful 5-year-old girl, . Since the

time she was about 11 mo old - I had a feeling that something was

wrong with fine motor, gross motor and of course speech. Through

the past 4 years, I have gone to numerous neurologists, best in the

field, I must add. We have gone non-stop to therapy with ,

but the progress was painfully slow. did not speak- making

it nearly impossible for us to communicate with her. Everyday at

night I would kiss , and standing over her head I would

say, " please start talking tomorrow " - subliminal messages - hoping

they'd work.

To no avail, my child was just not talking. Therapy helped, but

progress was limited. I don't want to continue with this sob-story,

as you probably all understand the fear and frustration in parents

and the child as well.

After becoming involved with

[Guest guest]

The very reason we started using higher doses is because we saw startling

improvements even on the lower doses.

We started out at 1/2 tsp a day. -

RE: [ ] progress

Hi Gloria,

I wanted to say that I know exactly how you feel. Last night at the

table, 's brother (Ari 6.8) began to speak while was

trying to say something, so she looked at Ari and said in a loud and

affirmative tone " Shut up Ari, Shut up " . We were so excited and

overjoyed at her using that phrase - we forgot to explain to her

that it was inappropriate to use at the table and to her family

members. We just thought it was golden -just like you did.

Here is some background from one of my previous posts that will tell

you why this is so exciting .

" I am a mother of a beautiful 5-year-old girl, . Since the

time she was about 11 mo old - I had a feeling that something was

wrong with fine motor, gross motor and of course speech. Through

the past 4 years, I have gone to numerous neurologists, best in the

field, I must add. We have gone non-stop to therapy with ,

but the progress was painfully slow. did not speak- making

it nearly impossible for us to communicate with her. Everyday at

night I would kiss , and standing over her head I would

say, " please start talking tomorrow " - subliminal messages - hoping

they'd work.

To no avail, my child was just not talking. Therapy helped, but

progress was limited. I don't want to continue with this sob-story,

as you probably all understand the fear and frustration in parents

and the child as well.

After becoming involved with

[Guest guest]

Thanks . I had Amber on the ProEFA when she was about 18 months

old for many months. I only stopped her then because she got severe

diarhea from antibiotics (she had it for over 2 weeks and we had to

stop everything and put her on a specific diet to clear it up). I

never really saw any surges that you and others talk about. I tried

her again maybe six months ago (she was a little over 4 at the time)

but I stopped after a week because of the diarhea.

I still have two bottles of the Pro-EFA from when I stocked up in the

winter (they are good through October so I might as well use them

up). How long until I am supposed to see a surge? I definitely want

to give them a good chance to work, because if it is something that

could possibly help Amber obviously it will be more than worth it.

But I also don't want to buy more if they aren't helping.

We are from northeastern Pennsylvania. Our SLP treats a few children

with apraxia or suspected apraxia but I don't think that is enough to

call it a cluster area (then again, I don't know how rampant it

actually is in our area). We are about 2 hours north of center city

Philadelphia, just to give you an idea of our location.

Amber also has some cognitive delays so I am wondering if she is one

of those children that would have had apraxia anyway. While I don't

necessarily believe in IQ testing, she will be 5 next month and

struggles with a lot of concepts (bigger, biggest, behind, next to,

etc.) and lots of other things that my older dd knew by age 2 or 3.

She has been tested by two different testers and both have put her in

the mild MR range (although there was a 9 point swing in their

scores) and they both used the nonverbal test (I forget the name but

all Amber had to do was point to the correct picture instead of

talking).

Thanks

Tina

>

> Kerri for apraxia the lipid testing last I checked was found to be

> 50% successful by those neuroMDs I know who 'used' to recommend it

> prior to supplementation. Most parents just give their child fish

> oil and see what happens -but some wanted to do blood analysis

first

> to I guess scientifically know what exactly their child needs. In

> theory that probably seems like a great idea. Reality and theory

> don't always agree and this is an example of that when the correct

> formula of EFAs are used.

>

> I'm sure in the other group they just don't know which " fish oil "

> formula is better than another. Most people think fish oil is fish

> oil, know I used to. Most people who come here from the autism

> groups used to have their child on cod liver oil, and don't even

> know the difference between cod liver oil and fish oil that's not

> from the liver of the fish, no less fish oil formulas that have

> Omega 6 added, or higher EPA, etc..

>

> In this group where people have learned before they started their

> child the right formula of EFAs from either this group or their

> child's MD -just using that right formula has around an 85 to 95%

> success rate in areas where there are lots of apraxic children

(like

> NJ, Ohio, Texas, etc.)

>

> And Amber, how long did you have your child on the two ProEFAs?

I'm

> guessing if you stopped because of loose stools you didn't keep her

> on past a few days to a week because it takes that long at times

for

> that stage to pass. (mild loose stools that is -they are not

severe

> and most don't stop due to it) Then again, if your child was on

the

> EFAs for a few months and you saw nothing at 2 a day -

> EFAs 'probably' won't work at the increased dosage either. I hope

> they would but in the past even if the dosage was too low you'd

> still see some surges and improvements out of the usual, just not

as

> dramatic as when it's the higher dosage. With fish oil typically

> you notice the changes fairly quick -a day to three weeks for

most.

>

> And Amber, if the EFAs don't work -let us know where you live

> (state, country) and also let us know if you know lots of other

> children with apraxia around you.

>

> There is a percentage of children who would have had apraxia

anyway,

> probably for genetic or other reasons then the majority of children

> in the alarmingly fast-rising group who have this previously rare

> disorder.

>

> When will the EFAs probably work? If you have a child that has

> apraxia and nobody has a clue why (no history of it in the family)

> and especially if you know personally or through your child's SLP

at

> least two other parents who have apraxic children in your

> neighborhood. In that case stock up on those Omega 3/6 fish oils

> like ProEFA, because the high chances are no matter what dosage and

> even as low as one capsule a day (I know this because that's where

> most of us used to start...that low and we all saw surges) and

> whether you spend the money on blood analysis or not -you'll see

the

> surges and so will everyone else!

>

> The following is an archive on this:

>

> Re: carnosine

>

>

> may want to keep an open mind regarding blood testing as the

> way to know correct levels of Omegas at least.

> (and to date still have not done blood testing on either of my boys)

>

> The following archive may answer why*

> *Dr. AJ who I speak of below is now behind

> www.durhamtrial.org

>

> From: " kiddietalk " <kiddietalk@...>

> Date: Sat May 14, 2005 7:05 am

> Subject: Re: Re-adding Pro-EFA kiddietalk

>

> Hi Laurel,

>

> When the MD diagnosed Evan as " Receptive-Expressive Language

> Disorder " what methods were used for testing to know there

> were " receptive " delays in addition to expressive delays? Does Evan

> (on the oils at least) know how to follow 2 and 3 part commands

> like " go get your teddy and bring him to me " or " grab your sneakers

> and your sweater and hurry to the car or we are going to be late! "

>

> I like to give children the benefit of the doubt and 'not' use the

> word " receptive " or " cognitive " delayed -unless you seek second

> opinions and know for sure. Those words easily change over the

> years -and 'not' for the better. Know if they are correct to use

> right from the start -and make sure that only nonverbal testing is

> used for verbal disabled children or it's a violation of their civil

> rights and can be filed as a complaint with the Office of Civil

> Rights.

> (Please let me know if any of you are at that point lisa@... )

>

> Laurel once a child is up to two capsules of ProEFA, there are no

> reasons I know of not to go back to the two capsules if you stop and

> want to start again. Perhaps your child however has special dietary

> needs you are following from an MD. Just curious too. Does your

> child's MD know that each time he diagnosed your child it differed

> depending upon whether he was on the oil therapy? That is what is

> always posted here -a child on the oils will no longer present all

> the symptoms of his or her diagnosis. Apraxic children for example

> no longer fit the classic profile of apraxia....but doesn't mean

> they no longer need speech therapy! The oils just help to

> accelerate the progress.

>

> One or two capsules of ProEFA (fish and borage oil with a 5/1 ratio

> of Omega 3/DHA and EPA, over the Omega 6/GLA) are

> considered " extremely conservative dosages of fish oils " by all the

> professionals that spoke at the First Apraxia Conference

> http://www.cherab.org/news/scientific.html

>

> To give you an idea -one capsule of ProEFA is about equivalent to

> the dosage the FDA approved for infant formula.

>

> When we began fish oil therapy through CHERAB, we had hundreds of

> members that all knew each other and knew each other's children.

> Were there some that did blood analysis and waited to begin EFAs

> until after a host of other complicated nutritional supplements were

> given to the child? Yes. And in those cases there was a 50%

> success rate of the other stuff working. For those of us however

> that 'just gave the child fish oils " we had closer to a 90% success

> rate.

>

> One exception to this...If EFAs 'don't' work -which is the rare

> situation from what we've seen anyway -then perhaps that child needs

> other supplements to help digest the essential fatty acids properly.

>

> There's a very old expression " The Proof Is In The Pudding " which I

> love. If you try EFAs and they work...then that's all you need to

> know unless they don't work, or work well enough.

>

> As I posted once -I was standing next to Suzanne Smolyar who went

> the blood analysis route for her 5 year old daughter 'after'

> the ProEFA worked for her. Suzanne was talking to Dr. AJ

> about her daughter's blood analysis results. I said excuse me to

> both and asked " Dr. , if it was your child who is a child

> like those of ours in this group with a speech impairment or ADHD or

> whatever -and not for research, would you do blood analysis before

> you supplemented with fish oil...or...would you just supplement your

> child with the fish oils? " She (again) made a face like " you're

> kidding, right? " squinting her eyes a bit with a smile and said " I'd

> just give him the fish oils. "

>

> Here's just one of many articles about the most recent study on EFAs

> that Dr. AJ who spoke at the First Apraxia Conference was

> behind

>

> Can fish oil supplements really boost your brain power? Get the

> lowdown:

> http://www.gm.tv/index.cfm?articleid=14487

>

> And...here's just one archive below as to why I'm not a huge

> believer in blood analysis. It obviously has some major flaws due

> to the blood brain barrier.

>

> This story again was based on a time when we all knew each other in

> person as a large group from mainly 1999 to 2003. When people post

> here you don't know what's the reality for the group -you do when

> you all know each other in person as a group.

>

> ~~~~~~~~~~~start of archive

>

> Unless we understand what is going on in our children and can make

> sure there is proper diagnosis/therapies for each -which we don't -

> and we understand what all the many various supplements are doing to

> help or not help, I'm not a huge believer of blood analysis for

> neurological conditions. This is why I choose to stick to those

> therapies/treatments/supplements I know are benign. I will add to

> that -unless there are medical reasons.

>

> My reasons on the blood analysis stem from EFAs due to another

> scientist/mathematician/mom in our group -former CHERAB VP Suzanne

> Smolyar who is now attending medical school to study EFAs due to her

> daughter 's amazing reactions on EFAs.

>

> " From: Suzanne Smolyar

> Date: Wed Mar 21, 2001 2:36 pm

> Subject: RE: [ ] progress

>

>

> Hi Gloria,

>

> I wanted to say that I know exactly how you feel. Last night at the

> table, 's brother (Ari 6.8) began to speak while was

> trying to say something, so she looked at Ari and said in a loud and

> affirmative tone " Shut up Ari, Shut up " . We were so excited and

> overjoyed at her using that phrase - we forgot to explain to her

> that it was inappropriate to use at the table and to her family

> members. We just thought it was golden -just like you did.

>

> Here is some background from one of my previous posts that will tell

> you why this is so exciting .

>

> " I am a mother of a beautiful 5-year-old girl, . Since the

> time she was about 11 mo old - I had a feeling that something was

> wrong with fine motor, gross motor and of course speech. Through

> the past 4 years, I have gone to numerous neurologists, best in the

> field, I must add. We have gone non-stop to therapy with ,

> but the progress was painfully slow. did not speak- making

> it nearly impossible for us to communicate with her. Everyday at

> night I would kiss , and standing over her head I would

> say, " please start talking tomorrow " - subliminal messages - hoping

> they'd work.

>

> To no avail, my child was just not talking. Therapy helped, but

> progress was limited. I don't want to continue with this sob-story,

> as you probably all understand the fear and frustration in parents

> and the child as well.

>

> After becoming involved with

[Guest guest]

Hello everyone. Was just curious if anyone didn't see any results

on lower doses but started to see results when they increased

doses. My daughter is apraxic and was on 2 ProEFA and 1 ProEPA for

a month and we really didn't see any significant increases in speech

that many have described. We've increased to 2 ProEFA and 1 ProEPA

twice a day (passed on 's feedback) about a week ago, and

still are not seeing any surges. My wife and I are starting to lose

hope and wanted to see if anyone didn't see progress on lower doses,

but did on higher doses. Many Thanks.

Regards,

Joe

>

> The very reason we started using higher doses is because we saw

startling

> improvements even on the lower doses.

> We started out at 1/2 tsp a day. -

>

> RE: [ ] progress

>

>

> Hi Gloria,

>

> I wanted to say that I know exactly how you feel. Last night at the

> table, 's brother (Ari 6.8) began to speak while was

> trying to say something, so she looked at Ari and said in a loud

and

> affirmative tone " Shut up Ari, Shut up " . We were so excited and

> overjoyed at her using that phrase - we forgot to explain to her

> that it was inappropriate to use at the table and to her family

> members. We just thought it was golden -just like you did.

>

> Here is some background from one of my previous posts that will

tell

> you why this is so exciting .

>

> " I am a mother of a beautiful 5-year-old girl, . Since the

> time she was about 11 mo old - I had a feeling that something was

> wrong with fine motor, gross motor and of course speech. Through

> the past 4 years, I have gone to numerous neurologists, best in the

> field, I must add. We have gone non-stop to therapy with ,

> but the progress was painfully slow. did not speak- making

> it nearly impossible for us to communicate with her. Everyday at

> night I would kiss , and standing over her head I would

> say, " please start talking tomorrow " - subliminal messages - hoping

> they'd work.

>

> To no avail, my child was just not talking. Therapy helped, but

> progress was limited. I don't want to continue with this sob-story,

> as you probably all understand the fear and frustration in parents

> and the child as well.

>

> After becoming involved with

[Guest guest]

,

Sorry, meant to say " based " not " passed " on your feedback, in my

posting below. Your feedback was very helpful.

Regards,

Joe

> >

> > The very reason we started using higher doses is because we saw

> startling

> > improvements even on the lower doses.

> > We started out at 1/2 tsp a day. -

> >

[Guest guest]

you're welcome to pass on it as well.

[ ] Re: How do you know how much EFA and EPA

to give

,

Sorry, meant to say " based " not " passed " on your feedback, in my

posting below. Your feedback was very helpful.

Regards,

Joe

> >

> > The very reason we started using higher doses is because we saw

> startling

> > improvements even on the lower doses.

> > We started out at 1/2 tsp a day. -

> >