Re: How do you Know What's Helping?

[Guest guest]

Dear ,

It is so hard to say for sure, and you bring up such a valid point. I would

be assuming I also had " just a late talker " - late bloomer who was

incredibly clumsy and slow to make his motor milestones, and was just

catching up - except for the fact that we started cod liver oil instead of

pro-EFA. In a few weeks time (despite babbling, new words and unbelievable

turn-around in his coordination) - we saw the emergence of

obsessive/compulsive behavior with respect to cleaning and being clean

(which was very odd for this mellow easy-going boy), and SID that soon made

it impossible to touch the child without him screaming in pain. We stopped

the CLO, the SID and OCD behavior disappeared within the week. But this

child also stopped babbling, started grunting again, and started falling

down - basically loosing all that he had gained - regressing before our

eyes. I did not believe at the time this was at all related to the fish oil

(though hoping it was based on 's description of Tanner regression off

omega 3) - but feared this was the regressing presentation of whatever

neurological condition he had. It was what I had been fearing - first the

language delay...now the regression of milestones. That's never a good

scenario. I was devistated watching this clinical deterioration. As a last

ditch before I hysterically contacted my pediatrician requested an emergent

MRI to figure out what was going on, we started pro-EFA - and I prayed.

Within a week we saw dramatic improvement in coordination, and the babbling

returned, and we regained the losses. Within 2 weeks we surpassed where we

had been, and had nearly 20 new word approximations - without the return of

OCD behavior or severe SID. When we first doubled the dose, we saw mild

return of SID related to binding clothing around arms and legs that bothered

him etc - but mild and worth the exchange of increased communication. But

SID was not the big problem it had become on cod liver oil.

So for some children, yes. Leave them alone and they will do fine (75% of

the time). But for the 25% minority, wait and see can have life-long

implications. I think that any late talking child with other mild " soft

neurological signs " like low tone or SID - definitely warrant the aggressive

early evaluation/intervention. Late bloomers usually don't have those other

tell-tale signs. A little extra ST or OT for a kid who turns out to be on

the range of normal is no big deal, but waiting a year or 2 for that kid who

really needed early intervention is an unfortunate delay for that child and

family.

I was incredibly skeptical about many of these interventions - but watching

the regression in my boy off omega supplements clearly convinced me that we

needed to step up the intervention for SLP and OT, that he wasn't going to

just grow out of it, and convinced me that there is some fatty acid

abnormality - at least in my child, that can be somewhat compensated by high

dose supplementation. -

[ ] How do you Know What's Helping?

Hi-

I have been thinking about this for days, and wanted to ask the

question. My eldest son, now a completely gifted 13 year old, was a

late talker. And I mean really late talker. He really did not

speak much at all until full sentences began at 2.5 years. He had

lots of approximations, and was seemingly bright and engaged, but no

real langauge at all. We, rightly or wrongly, agreed to the wait

and see approach. And obviously, he's fine.

So, what if I had started him on the GFCF diet at 2.25 years? I bet

I would still be on it today having seen the " miracle " it provided.

And what if I had started him on ProEFA at 2.4 years? Would I be

crediting the oils? Or dropped just dairy? Or tried cranial sacral

therapy?

My is 6 and struggling mightily, so he is a totally different

kid than his older brother. But I do wonder sometimes what would

have happened if I had known enough to be worried when my oldest was

two (or if the internet and all of this information had been

available to me at that time) what a difference it may have

made.....or not made.

[Guest guest]

Hey !

Your question is one most of us think of when we have a child with a

surge on something we are doing. " Is this something that would have

happened anyway? " I am going to just address the oils because if a

child is on a special diet that is not something a parent will

necessarily be able to stop and start, it's perhaps a diet that was

prescribed by a medical doctor. I was a celiac baby and was on a

special diet that saved my life -so I know they have their place.

Unquestioned place to save lives.

But on a more typical note -the average children here do not deal

with life and death issues for why they are on special diets or why

we give them fish oils. Most here are trying to help their child

find their voice and give their child the best chance to be " normal "

But let's me just talk about fish oil because it's a no brainer to

prove it's not a coincidence even prior to the research which is

inevitable.

One day there will be a scientific explanation why fish oils are

creating the " miraculous " surges in the children.

I'm sure the first few that said eating oranges keep sailors alive

were laughed at. I'm sure most MDs laughed at " witches brew " as a

treatment for heart disease.

Years ago nobody knew about vitamin C and scurvy

http://www.umass.edu/nibble/infofile/limey.html or fox glove and

heart disease

http://www.botgard.ucla.edu/html/botanytextbooks/economicbotany/Digitalis/index.\

html

or what about folic acid and birth defects?

http://www.fda.gov/FDAC/features/796_fol.html

(I'm sure before the research many Moms would have laughed at the

thought they needed folic acid to prevent birth defects and would

have said " I never took it and my children are just fine " )

Here's some facts from this group if you check the archives or join

a local support source:

When the majority stop the oils the child will either regress or

stop progressing at the rapid rate. When put back on the oils the

surges will come back again. Will the child eventually speak like

everyone else with or without the oils? Could be, especially if it

wasn't a speech impairment and was just a simple delay in speech

like what your son had.

I can tell you that when Tanner was first diagnosed only 6 years ago

the prognosis for apraxia was not so bright. When I asked his

speech therapist in the typical sarcastic way that I talk and

said " OK so he has apraxia...he's still going to talk right?! "

Expecting her to laugh and say " Of course " but instead I got a blank

pregnant stare and then " ....it depends " Tanner is now 9 and to

this day if we miss giving him the oils for even one day he has a

regression. There is no doubt in anyone's mind that the oils work...

for him. Therapy too -but alone it was painfully s...l...o...w...

I can post and have posted the exact changes you will see in your

child and in the exact timetable. I post what we are witnessing in

mass as a group for years. Oil therapy doesn't work for all the

children, it works for almost all.

2 and a half isn't considered extremely late to start talking. My

Aunt Betty didn't start till 3, and there are quite a few children

in this group that didn't start the oils until till after 5. Still

nonverbal at 5 or 9 and nonverbal up to that point -of fish oils. Still say

coincedence? Read those archives and you'll say " Probably not "

Your message is the reason that whenever we have a media opportunity

to prove the fish oils work -I tell the producers to find the late

talker kids themselves and find children who are over five. Because

even though it's a miracle to those of us that fish oils work for

under 5 -it's the doubt from the average person that the surge was

just a coincidence and would have happened anyway that helps to keep

this simple, inexpensive, healthy treatment away from the population

of children that desperately could benefit from it.

On the other hand back to witches brew you do have a point and it's

one I've gone into before. It has to do with knowing what methods

are useful or useless. Dr. Withering had a patient with a then

deadly heart disease and the prognosis was grim. She was supposed

to die but next time the doctor saw this patient she was thriving

and healthy. She told him about this witches brew that the gypsies

made for her. The doctor didn't laugh at the treatment like most

did, but examined the witches brew. Just about all of it, the

chants at moonlight, the eye of newt or whatever, were all useless -

but one herb was useful -and to this day there is no man made drug

to replace fox glove. True story and I have more links about this

in the archives.

http://vcampus.uom.ac.mu/upload/public/2002101513546.pdf

So yes -it's wise to know if you are chanting for no reason...unless

of course one likes to chant anyway!

I agree it's wise to be doubtful about things. Typically when

things sound too good to be true they are just that -too good to be

true. But it's good 'and' it's true.

(well not all good -the oils do stink if you spill them!)

=====

[Guest guest]

>

> " I can post and have posted the exact changes you will see in your

> child and in the exact timetable. "

Wow , I think you might want to be careful what you " promise "

people. There are more of us than you know that did not respond to

your exact timetable. There are lot of new families reading this list

who will now want to know exactly how long it will take until their

child is cured.

[Guest guest]

I didn't promise anything -you are putting words in my mouth. I'm

stating what works for the majority.

I post what works for the majority because that's who the oil therapy

will work for. If a child just has a simple delay in speech they

don't " need " fish oils to talk, but it's still healthy.

This message of yours is why I encourage people to join local support

sources because then they will verify what I'm saying.

One day there will be research to prove what I'm saying but even

without it we have incredibly powerful anecdotal evidence. For this

reason I continue to fully stand by what I say based on years of

running this group and the thousands of members who have tried the

fish oils that I know either personally or through telephone calls or

through this group.

It's not wise to throw stones when you live in a glass house. Why

discourage new parents from trying something inexpensive and healthy

and easy that they themselves will find out will work or not in a day

to three weeks 'almost' across the board?!

=====

[Guest guest]

Hi !

Good point - I forget we have people on this grouplist from

other countries where certain words may not translate well. I meant

this definition of the word " majority " (from Dictionary.com)

" The greater number or part; a number more than half of the total. "

And by the word " work " I mean not cure -but accelerated progress to

the point that the child may no longer fit the definition of what

apraxia is (if we are talking about apraxia) or the child may drop

symptoms of the condition he or she is diagnosed with -even symptoms

of rare genetic disorders.

It's a good thing you brought this up because the fish oils work for

more than the majority (huh?) if majority means more than half.

Where do I get this from? A few places. If you have a room full of

about 100 parents of apraxic children from the NJ area the fish oils

will work for somewhere between 80 to 95 of them. May be slightly

less in how well it works if the child is from an area where there

are not many other apraxic children around. My theory is that

whatever is causing the rise in speech impairments the EFAs are

helping with. There are of course those that would have been

apraxic anyway -regardless of environmental or other triggers.

Those from other countries may not have a support group around to

see what I'm talking about in how fish oils work for almost all -but

that's really where you'll see the actual results. Then again -it

takes only about a day to three weeks on the right formula to know

if I'm right or not.

I used to not be so bold about stating what I do today 5 years ago.

Why else do I say this?

In the CHERAB professionals anecdotal feedback Dr. Katz had insisted

(if you check the archives) that he didn't want SLPs to fill out the

forms -just medical doctors. So hundreds of parents from all over

got their child's MD to fill out the forms. Then when they went to

do the verification of the doctors (Dr. Katz and Dr.

Zimmerman from Kennedy Krieger) the MDs said they didn't personally

witness first hand the changes as the happened and just went by the

parents feedback. They were all thrown away. There were however a

handful of parents who either couldn't get their child's MD to fill

out the form or didn't follow the instructions that had the child's

SLP and teachers who worked with the child each day fill out the

report. There were only 19 of them. The fish oils in that small

study (which 'would' have been huge if all knew to get the SLPs

input!) worked for 17 of the 19.

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

Not that I was told but I figured out one of the children that the

fish oils didn't work for was Bilker's son .

was on the ProEFA for one month and in that time he did have a

surge...but the SLP did not credit it to the ProEFA -she credited it

to the fact that for that one month really worked hard at

speech therapy. I talked to about this and said that his SLP

wasn't supposed to decide where the surge came from and was just

supposed to report if there was a surge or not. Please go ahead and

check 's page for before and after the ProEFA. Listen to the

two in 2001 (just a few months apart which never did before

and since) If you listen you'll hear the surge yourself.

joked with me that I know he is a die hard skeptic and that

just really really wanted to talk at this point. I said " come

on.....like he didn't really really want to talk at I don't know 6.4

years old or 7.2 years old? Why just that period he's on ProEFA?

And even if all ProEFA does is make kids really really want to talk

so that they work harder at speech therapy isn't it still worth it? "

I love what does on the Talking Page and his family is

awesome. But you see the dilemma -even when it works there is doubt

because there is no clinical trial to prove folic acid prevents

birth defects yet...I mean that fish oil helps children with motor

planning and other impairments of speech.

http://www.debtsmart.com/talk/brandon.html

Remember however -this was from one of the two out of 20 that

reported the fish oils didn't work. (so what I'm trying to say is

that the fish oils worked probably for 18 out of 19 in this case)

And then G.'s child initiated the small study out of

University of Arizona where the ProEFA worked for 17 out of 18. I

said to " Don't tell me let me guess. The one the ProEFA

didn't work for had severe autism " And she said " How did you

know?! " I'm not a genius (my 159 IQ is actually one point below)

but it's just what you see and hear over and over and over.

I don't believe one should just go by what is posted here alone.

From what I've seen over the years the parents that stick around for

the most part (see -didn't use the word majority!) are those that

have children that they are worried about because they are not

talking, or just diagnosed with some impairment or syndrome, or just

started on fish oils and just starting to surge -or those the fish

oils don't work for. Most of the rest that the fish oils work for

fall away because they get busy doing other stuff. I post about

that all the time. There are however some that have children that

were apraxic that are doing really well today who stay here to reach

out and help others. Those parents are the golden ones here.

=====

[Guest guest]

Charlotte, Josh is the official of the day for this

group!

What incredible news to hear from where he was! Please update the

group on how he got to where he is today (and let me know if you

want me to archive history here)

CONGRATULATIONS!!! )

=====

[Guest guest]

it's good you brought this up for another reason. Up till

recently in this group pretty much everyone had their child on just

one capsule of ProEFA a day to start. All those in the professional

anecdotal feedback for the First Apraxia Conference for example no

matter what age were on just one a day. Even though had a

surge in the three months he was on the ProEFA (one a day for 3

months) he was nine years old when he tried them! We know today

that one a day isn't enough for the apraxic children that are over

five for the most part. I mean the FDA approved dosage in infant

formula of EFAs is about the same as one capsule of ProEFA!

For those of you who are asking about dosage however -I'm not

ignoring you -but the subject is on shaky ground right now and I no

longer feel comfortable saying what is best since 's example

is such a paradigm shift into exploring higher dosages. New rule of

thumb is that if you see any changes even subtle ones on the one a

day in an older child -you may want to double to two and see if you

see more of a change etc. Spread it out to morning, afternoon

and/or evening dosing. Speak to your child's ped about it.

On another note...I just got a call today from a parent of an ADHD

child who I had talked to about ProEFA/ProEPA. She told me she had

amazing news for me and I thought she was going to tell me about her

son. Well she did -but then she said to me " And...this is the first

month I can remember ever that I didn't go through PMS! I had no

idea I missed going through it till it was past the time I would

have gone through it! " When I asked her the dosage she is taking

she said " One a day but I " m thinking of doubling or tripling that "

See now that's an area that fish oils are good for that none of us

even mentioned before! (especially for kids!!)

(She took just the ProEFA)

I don't doubt it's how it worked for her even though to date that

was the only person I've heard from personally about this.

And I too used to work in marketing in the NY film

industry. Some of my jobs were for TV commercials so know just what

you are talking about. It may sound like I'm hyping the results of

fish oil -but that's why I say to go to your local support group to

find out I'm just stating the facts. As Kathy from this group once

said " Don't these people realize that you are from Jersey and if you

were making all this stuff up about fish oils someone would have

kicked your butt by now?!! " (and yes -Kathy's whole family is on

the fish oils and doing amazing...Kathy want to respond how this is

the same old same old doubt that we've been fighting for years now?!

ever since

http://www.cherab.org/information/dietaryeffects/Englemed.html )

=====

[Guest guest]

Hi -

I think this is the quote that is referring to when she talked

about promises:

You wrote:

**********

I can post and have posted the exact changes you will see in your

child and in the exact timetable. I post what we are witnessing in

mass as a group for years. Oil therapy doesn't work for all the

children, it works for almost all.

**********

My 3 1/2 year old is now recovered from apraxia, and she showed only

modest improvement from taking fish oil alone for months. She still

takes it, but it did not allow her to recover. She needed other

supplements and intervention (l-carnosine, liposomal glutathione, LDN,

gfcf diet, methyl B12 injections) to recover. With all the things I

just mentioned, we saw tremendous surges in language shortly after

starting, something we never saw with fish oil. Essential fatty acids

are good for everyone, and most people don't get enough, but I don't

think it's a cureall for apraxia. I know too many children who have

not recovered or even made substantial gains on it.

One reason you may see different results from the parents on this

group is because some of them are here partly because fish oil has

worked for them, and fish oil is the primary recommendation made on

this group other than speech and occupational therapy.

I'm glad fish oil has worked well for so many on this list. I just

hope that parents who read this board and don't see amazing results

from fish oil keep looking. Other things have made a huge difference

for some children (like my daughter).

The question of what actually worked for your child will always be

unanswered. Sceptics will always suggest that your child would have

improved any way. Do you really want to test our their theories on

your child, when you have so much anecdotal evidence that some of

these supplements are helpful? You cannot do a scientific study on

your child, and they are all individuals and therefore respond

differently to different therapies and supplements.

ps Actually Dr. Neubrander has done some studies that indicate that

methyl B12 injections improve language, and Dr. Chez has likewise done

some studies on carnosine.

>

> I didn't promise anything -you are putting words in my mouth. I'm

> stating what works for the majority.

>

> I post what works for the majority because that's who the oil therapy

> will work for. If a child just has a simple delay in speech they

> don't " need " fish oils to talk, but it's still healthy.

>

> This message of yours is why I encourage people to join local support

> sources because then they will verify what I'm saying.

>

> One day there will be research to prove what I'm saying but even

> without it we have incredibly powerful anecdotal evidence. For this

> reason I continue to fully stand by what I say based on years of

> running this group and the thousands of members who have tried the

> fish oils that I know either personally or through telephone calls or

> through this group.

>

> It's not wise to throw stones when you live in a glass house. Why

> discourage new parents from trying something inexpensive and healthy

> and easy that they themselves will find out will work or not in a day

> to three weeks 'almost' across the board?!

>

>

> =====

>

[Guest guest]

Hi ,

American Idol is down to the final 12. That means next week only

one of the 12 final contestants will be voted off. The 'majority'

will remain. That's not a promise to the 12 that all will remain

when one says the majority won't be voted off (!) -it's a fact that

one out of 12 will be going home next week.

And the timetable isn't a promise either for all -it's for those

that the EFAs work for -the majority.

Below is the link and the timetable for most that was posted in the

archives years ago and many times since then and is now on the web.

People don't post about fish oils here just because we talk about

them here, they post about them because they create incredible surges

in short periods of time in the majority of children. I'm one that

tried many other methods for my son Tanner and recommend exploring

many of them -but if I had to choose one alternative for me it's a

no brainer it would be the right formula of EFAs. The other

alternatives? Carn-aware is reported/proven to work for some who try

it and it's worth exploring, special diets have their place, B12

shots work for some that go that route but not as many do -but fish

oils work for almost all. Again if you could join a local support

group you could verify what I am saying.

Saying EFAs works for most is based again on strong anecdotal

evidence for years from thousands of members here as well as one

small clinical trial. 17 out of 18 which was the one study result

from the University of Arizona means that EFAs won't work for one

out of eighteen children. From the CHERAB First Apraxia Conference

results from the professional anecdotal feedback where the EFAs

worked with amazing surges in one to three weeks for 17 out of 19

children - the EFAs were claimed not to' work for 2 out of the 18

children.

And why can something work for almost all and not all? I suspect it

has something to do with the fact that there is a percentage of

children that would have had conditions of speech like apraxia

anyway -but face it -apraxia used to be a rare motor planning

disorder practically unheard of in children. Where is it coming

from? I and many others suspect environmental triggers.

http://www.cherab.org/news/Save.html If you live in an area without

the triggers you probably live in an area where you are the only one

with an apraxic child around...and for you EFAs may not be the

answer for your child. It may be -but the chances appear to be a

bit lower. Dr. Stordy said at one conference she thought they work

for around 80% -so perhaps then your chances are there. Still the

majority by far at 80%.

The list of things I write you will see are (again) based on what we

have seen in our group. Try to find someone who said it took 7

weeks for the EFAs to work because it's going to take you awhile if

you check the archives or other sites. Almost all see the first

surges in a day to three weeks. The longest I've heard in this

group if 5 weeks -even though Dr. Stordy said they can take up to 3

months. Since has changed the dosage however -who knows.

Perhaps those children that didn't respond on the one or two a day

would have responded to higher dosages. In general however -even if

it's the wrong dosage -you'll still see something even at a dosage

that is too low.

And when I type fast I just say apraxia, but I've seen it work for

those with a diagnosis of apraxia, PDD, mild autism, and other

impairments of speech, as well as garden variety late talkers with

no diagnosis.

I have below some of my EFA 101 message which is posted at the

Speechville message board. There are other messages to read and

answer there such as this one

http://www.speech-express.com/boards/viewtopic.php?t=280

Here's the link to the entire EFA 101 message from the archives here

which is posted at the Speechville message board:

http://www.speech-express.com/boards/viewtopic.php?t=620

Dosage of one capsule a day ProEFA that at the lowest dosage appears

to be the best -

148 mg EPA

99 mg DHA

40 mg GLA

Here is what many of us have found to be the best plan

anecdotally:

....start with the basic formula, one ProEFA a day, we

saw surges in a few days to three weeks which continued for months -

we then reached a plateau after around 6 months.

At this point we raised the dosage to two capsules of ProEFA a day

and once again had those surges which lasted again for months.

When we reached the next plateau after around a year, instead of

going to three a day - we squeezed 1/2 to one capsule of ProEPA into

the 2 capsules of ProEFA and for almost all of us that try -that

created another surge.

Over time -you may raise the dosage up higher -and you may slightly

change the formula to raise the Omega 3 over the Omega 6 ratio.

Most found raising the EPA vs. the DHA or GLA to be best -but

you need to know your own child, keep track of his progress through

both your own observations and that of the professionals -with the

advice of your child's doctor -to know what is best for him/her.

There is much more in the archives both here -as well as more

information at

http://www.cherab.org/information/indexinformation.html#diet

http://www.speechville.com

Since I receive lots of calls about this -I wanted to list the most

common changes in an apraxic or other speech disordered child on

EFAs from what I've read and heard and seen.

1. Increase in babbling or attempts at sounds.

2. Increase in imitation.

Changes also can be looked for in (what you see as positive or

negative)

sleep

attention

appetite

focus

behavior

stools

Next will come a breakthrough of something you were probably working

on for a bit -so you will be excited but will think " Well -I don't

want to get my hopes up we were working on that for awhile now -

maybe it's just a coincidence " However after the second or third

surge in a short period of time -and then another - you are pretty

sure things are different and it's at this point the professionals

and the rest of the family and your friends are noticing it too -

maybe about two to three weeks now.

OK -the next stage is pure elation and hope -you see the light and

no longer feel as desperate and want to share this new information

with everyone and anyone. As the months go by and your child

continues to progress at a much more rapid rate -you may even start

to doubt the original diagnosis -especially if you started EFA

supplementation at two -and perhaps the SLP that diagnosed the

apraxia who also was at first excited is starting to second guess if

the original diagnosis was correct as well.

Unless you have to stop the ProEFA (or other Essential Fatty Acids)

and literally have the chance to see the regression of acquired

speech and language skills, attempts, and changes in behavior like

we did with Tanner (and/or have a chance to again witness the second

surge when your child is put back on the EFAs) -that doubt will

probably remain somewhere in your mind and in others around your

child. So the " I told you that he would start talking when he was

ready " comments should be expected of course.

Up to this point is understandable to me -it's the point after this

that is confusing to me, and perhaps not the best stage for our

children and for raising awareness or having research done to find

out what is happening to our children and why. Perhaps because we

have truly hit a paradigm shift...

As Dr. Agin states the EFAs actually appear to be in some

ways " curing " the apraxic child -even those diagnosed with severe

oral and verbal apraxia, hypotonia, sensory and behavioral issues.

Especially those started at younger ages.

The child on ProEFA or some other EFA formula's like it no longer

fits the criteria of the classic definition of apraxia -and yet

doesn't fit the classic perception of what a late talker is

either...

Some of the parents become more focused on other everyday activities

with their child and start to drift away from the support sources.

Problem with this attitude is that unless your child is really up to

speed on all aspects of speech and language, the support sources

that helped in the beginning will still benefit your child today.

ProEFA alone is not the only answer and until we know how and why it

works (or why in a handful of children it doesn't) we can't improve

on it "

Know there is lots of information here -but if you have to learn

just one thing from all of this it's right up on top -there is

always hope!

=====

[Guest guest]

-

I disagree with you based on the children I've known with apraxia,

including my own child. Fish oil was not a miracle for her language

even though I desperately hoped it would be at the time I started it.

I wish the answer was/had been so simple for us. I'm very fortunate

that my daughter has recovered, and the reason I persist in posting

here is because I want other parents like myself to continue to have

hope if EFAs don't work wonders for their child. There ARE other

supplements that may help, even if fish oil does not. Yes, fish oil

may be the simplest thing to try, and it's good for everyone, but it's

not the answer for all.

I think the percentage of children who improve significantly on many

of these supplements is quite speculative, because unfortunately most

kids with apraxia and autism don't try *any* of them. Those of us who

are using any nutritional approach are in the minority, so these

approaches haven't been studied in large populations. Therapists and

doctors are not recommending fish oil, B12 or any other supplements

very often.

I don't know personally any child who has recovered from apraxia or

had significant improvement in symptoms of autism from fish oil alone.

I think for a large number of children, the physiological issues

behind the disorder(s) are quite complex, and one nutrient alone will

not fix everything. (Though some believe that methyl b12 via injection

is very effective for a significant number). Of course, the set of

children I know with apraxia is not a large sample, but I don't think

the members of this group is a large sample either when you consider

the growing numbers of children with apraxia.

>

> Hi ,

>

> American Idol is down to the final 12. That means next week only

> one of the 12 final contestants will be voted off. The 'majority'

> will remain. That's not a promise to the 12 that all will remain

> when one says the majority won't be voted off (!) -it's a fact that

> one out of 12 will be going home next week.

>

> And the timetable isn't a promise either for all -it's for those

> that the EFAs work for -the majority.

>

> Below is the link and the timetable for most that was posted in the

> archives years ago and many times since then and is now on the web.

> People don't post about fish oils here just because we talk about

> them here, they post about them because they create incredible surges

> in short periods of time in the majority of children. I'm one that

> tried many other methods for my son Tanner and recommend exploring

> many of them -but if I had to choose one alternative for me it's a

> no brainer it would be the right formula of EFAs. The other

> alternatives? Carn-aware is reported/proven to work for some who try

> it and it's worth exploring, special diets have their place, B12

> shots work for some that go that route but not as many do -but fish

> oils work for almost all. Again if you could join a local support

> group you could verify what I am saying.

>

> Saying EFAs works for most is based again on strong anecdotal

> evidence for years from thousands of members here as well as one

> small clinical trial. 17 out of 18 which was the one study result

> from the University of Arizona means that EFAs won't work for one

> out of eighteen children. From the CHERAB First Apraxia Conference

> results from the professional anecdotal feedback where the EFAs

> worked with amazing surges in one to three weeks for 17 out of 19

> children - the EFAs were claimed not to' work for 2 out of the 18

> children.

>

> And why can something work for almost all and not all? I suspect it

> has something to do with the fact that there is a percentage of

> children that would have had conditions of speech like apraxia

> anyway -but face it -apraxia used to be a rare motor planning

> disorder practically unheard of in children. Where is it coming

> from? I and many others suspect environmental triggers.

> http://www.cherab.org/news/Save.html If you live in an area without

> the triggers you probably live in an area where you are the only one

> with an apraxic child around...and for you EFAs may not be the

> answer for your child. It may be -but the chances appear to be a

> bit lower. Dr. Stordy said at one conference she thought they work

> for around 80% -so perhaps then your chances are there. Still the

> majority by far at 80%.

>

> The list of things I write you will see are (again) based on what we

> have seen in our group. Try to find someone who said it took 7

> weeks for the EFAs to work because it's going to take you awhile if

> you check the archives or other sites. Almost all see the first

> surges in a day to three weeks. The longest I've heard in this

> group if 5 weeks -even though Dr. Stordy said they can take up to 3

> months. Since has changed the dosage however -who knows.

> Perhaps those children that didn't respond on the one or two a day

> would have responded to higher dosages. In general however -even if

> it's the wrong dosage -you'll still see something even at a dosage

> that is too low.

>

> And when I type fast I just say apraxia, but I've seen it work for

> those with a diagnosis of apraxia, PDD, mild autism, and other

> impairments of speech, as well as garden variety late talkers with

> no diagnosis.

>

> I have below some of my EFA 101 message which is posted at the

> Speechville message board. There are other messages to read and

> answer there such as this one

> http://www.speech-express.com/boards/viewtopic.php?t=280

>

> Here's the link to the entire EFA 101 message from the archives here

> which is posted at the Speechville message board:

> http://www.speech-express.com/boards/viewtopic.php?t=620

>

> Dosage of one capsule a day ProEFA that at the lowest dosage appears

> to be the best -

> 148 mg EPA

> 99 mg DHA

> 40 mg GLA

>

> Here is what many of us have found to be the best plan

> anecdotally:

>

> ...start with the basic formula, one ProEFA a day, we

> saw surges in a few days to three weeks which continued for months -

> we then reached a plateau after around 6 months.

>

> At this point we raised the dosage to two capsules of ProEFA a day

> and once again had those surges which lasted again for months.

>

> When we reached the next plateau after around a year, instead of

> going to three a day - we squeezed 1/2 to one capsule of ProEPA into

> the 2 capsules of ProEFA and for almost all of us that try -that

> created another surge.

>

> Over time -you may raise the dosage up higher -and you may slightly

> change the formula to raise the Omega 3 over the Omega 6 ratio.

> Most found raising the EPA vs. the DHA or GLA to be best -but

> you need to know your own child, keep track of his progress through

> both your own observations and that of the professionals -with the

> advice of your child's doctor -to know what is best for him/her.

>

> There is much more in the archives both here -as well as more

> information at

> http://www.cherab.org/information/indexinformation.html#diet

> http://www.speechville.com

>

> Since I receive lots of calls about this -I wanted to list the most

> common changes in an apraxic or other speech disordered child on

> EFAs from what I've read and heard and seen.

>

> 1. Increase in babbling or attempts at sounds.

> 2. Increase in imitation.

> Changes also can be looked for in (what you see as positive or

> negative)

> sleep

> attention

> appetite

> focus

> behavior

> stools

>

> Next will come a breakthrough of something you were probably working

> on for a bit -so you will be excited but will think " Well -I don't

> want to get my hopes up we were working on that for awhile now -

> maybe it's just a coincidence " However after the second or third

> surge in a short period of time -and then another - you are pretty

> sure things are different and it's at this point the professionals

> and the rest of the family and your friends are noticing it too -

> maybe about two to three weeks now.

>

> OK -the next stage is pure elation and hope -you see the light and

> no longer feel as desperate and want to share this new information

> with everyone and anyone. As the months go by and your child

> continues to progress at a much more rapid rate -you may even start

> to doubt the original diagnosis -especially if you started EFA

> supplementation at two -and perhaps the SLP that diagnosed the

> apraxia who also was at first excited is starting to second guess if

> the original diagnosis was correct as well.

>

> Unless you have to stop the ProEFA (or other Essential Fatty Acids)

> and literally have the chance to see the regression of acquired

> speech and language skills, attempts, and changes in behavior like

> we did with Tanner (and/or have a chance to again witness the second

> surge when your child is put back on the EFAs) -that doubt will

> probably remain somewhere in your mind and in others around your

> child. So the " I told you that he would start talking when he was

> ready " comments should be expected of course.

>

> Up to this point is understandable to me -it's the point after this

> that is confusing to me, and perhaps not the best stage for our

> children and for raising awareness or having research done to find

> out what is happening to our children and why. Perhaps because we

> have truly hit a paradigm shift...

>

> As Dr. Agin states the EFAs actually appear to be in some

> ways " curing " the apraxic child -even those diagnosed with severe

> oral and verbal apraxia, hypotonia, sensory and behavioral issues.

> Especially those started at younger ages.

>

> The child on ProEFA or some other EFA formula's like it no longer

> fits the criteria of the classic definition of apraxia -and yet

> doesn't fit the classic perception of what a late talker is

> either...

>

> Some of the parents become more focused on other everyday activities

> with their child and start to drift away from the support sources.

> Problem with this attitude is that unless your child is really up to

> speed on all aspects of speech and language, the support sources

> that helped in the beginning will still benefit your child today.

> ProEFA alone is not the only answer and until we know how and why it

> works (or why in a handful of children it doesn't) we can't improve

> on it "

>

> Know there is lots of information here -but if you have to learn

> just one thing from all of this it's right up on top -there is

> always hope!

>

> =====

>

[Guest guest]

Hi ,

I second your hopes that parents will search beyond fish oil for

other helpful treatments for their children if they don't see the

miraculous results from them. I think I can also understand where

's coming from. She's seen enough children helped by EFAs, she

really wants to make sure that everyone gives them a good try (and I

couldn't agree more - it's sad to think about the parents and

children out there who don't even know to try EFAs much less all of

the other stuff!). I don't think that your messages are competing,

it's just that one is for the newly diagnosed, and one is for people

with less-than-spectacular results from EFAs.

, it was your past messages that motivated me to search outside

of this group for other treatment options, and I thank you for it.

We are currently GFCF and use fish oil (3 Pro-EFA and 1 Pro-EPA per

day), carn-aware (2 per day), epsom salt baths, and grapefruit seed

extract. We just purchased some liposeutical glutathione, and I

have a question for you or anyone else who's tried it (I think you

know where this is going). How the heck do you disguise the

stinkyness? The bottle says orange juice, but Meg doesn't drink

that. I can't even put a fish oil capsule in her grape juice she

flips out. I haven't tried anything yet because if some kind of

food or drink offends her good luck getting her to eat or drink it

again!

Thanks for any advice,

Kerri

[Guest guest]

HI-

Ok, and for the rest of us who don't seem to follow this time table,

I give you an example of what we experienced:

We definitely saw an increase of imitation and ability to answer

yes/no questions within weeks of starting ProEFA. Therapy seemed

to be more effective because would actually TRY to say things

that he wouldn't/couldn't before. We seemed to see somewhat of an

improvement when we increased the dose again.

Fast forward almost three years. is 6 1/2. He is mainstreamed

in kindergarten with a very long IEP, and with very spotty cognitive

strengths and weaknesses. His langauge has exploded from having a

vocabulary of about 15 words at 3 1/2 years to over one thousand

today. But he is VERY far from having been his original diagnosis

of apraxia questioned or removed.

He cannot speak a long narrative of any kind. He struggles to

answer questions due to lingering word retrieval problems. Yes, he

is perhaps 80% intelligible, but he speaks in very short sentences,

struggles with syntax and words with more than 3 syllables.

Imaginative play is still a struggle.

Do we still use the EFAs? YES! I do think they are healthy and

have probably helped in many ways in this journey. I would not stop

them for anything. So the thought that I am portrayed as " throwing

stones " at this therapy is almost comical considering the number of

times that I have had to educate and justfy to doctors and

therapists as to why we use them.

But, judging by the number of people who email me privately on this

issue, I am far from being alone in the belief that EFAs are simply

A PART, and in some (the minority? the quiet MAJORITY?) percentage

of cases, they may be a small part.

And , FYI, many of us out here live in small enough communities

to not have access to a support group for apraxia families. In my

town of 60,000, I am sure that there are no more than a handful of

kids. So...online groups ARE our source of information and

support. That is why I tell my family's story here - not to throw

stones, but to provide a realty check. Because for every story like

's, there is probably one like mine. One that needs to be

told to help people understand and prepare for the journey ahead.

I have great hope for my sons's future, and so should all the

parents on this list. But personally, for me that hope needs to be

tempered with realism, and i believe that the newly diagnosed

parents on this list deserve that, as well.

> Since I receive lots of calls about this -I wanted to list the

most

> common changes in an apraxic or other speech disordered child on

> EFAs from what I've read and heard and seen.

>

> 1. Increase in babbling or attempts at sounds.

> 2. Increase in imitation.

> Changes also can be looked for in (what you see as positive or

> negative)

> sleep

> attention

> appetite

> focus

> behavior

> stools

>

> Next will come a breakthrough of something you were probably

working

> on for a bit -so you will be excited but will think " Well -I don't

> want to get my hopes up we were working on that for awhile now -

> maybe it's just a coincidence " However after the second or third

> surge in a short period of time -and then another - you are pretty

> sure things are different and it's at this point the professionals

> and the rest of the family and your friends are noticing it too -

> maybe about two to three weeks now.

>

> OK -the next stage is pure elation and hope -you see the light and

> no longer feel as desperate and want to share this new information

> with everyone and anyone. As the months go by and your child

> continues to progress at a much more rapid rate -you may even

start

> to doubt the original diagnosis -especially if you started EFA

> supplementation at two -and perhaps the SLP that diagnosed the

> apraxia who also was at first excited is starting to second guess

if

> the original diagnosis was correct as well.

[Guest guest]

Hi

I have to post my strong agreement with here. Fish oils alone

did not help Charlie and i don't believe for a second that they,

alone, would ever have helped him.

However fabulous it is for those parents who see great speech surges

with EFA's alone I always focus on the parents who simply don't see

that great result, for whom that will feel like another failure -

another thing that let down their child. How distressing it has felt

at times not only to be part of the community that no one wants to

join ( kids with issues) but to then be part of the smaller sub group

of kids that don't seem to be getting better.

I delight in every postive " yeah " post. I delight for those kids and

for their parents and carers. But our community is huge now and my

belief is that many parents like me choose simply leave this board

with no comment.

For those parents EFA's become the next thing on the list that they

ticked in the " didn't work " column.

I still give fish oils and i think they help. I think they are part

of the reason that my daughter is wonderfully verbally precocious.

But whilst I always rave about fish oils I don't find promises and

guarentees helpful. If a parent tries EFAs because they believe they

MAY help then they enter that trial with a measured hope that will

stand disappointment. If instead they try because they are assured

that EFA's are all most kids need to be cured how crushing to be one

of the few!

It is not about being accurate on the results because I don't

actually believe there is any useable data ( and after all there are

" lies dammned lies and stastics " ). Maybe we will get a decent study

one day that gives us a number ( no one can seriously use 17 out of

19 that is ludicrous)... but for the time being isn't it the kinder

thing to be moderate and supportive rather than dogmatic and risk

exposing parents to bitter disappointment. I have read many of the

posts from parents who have tried EFA's and it has not worked from

them. Their posts always seem so sad they always take me back to

those endless days of crushing disappointments and despair. I was

endlessly guilty and almost broken by the frustration that nothing

was providing the miracle that seemed to be happening to so many

parents around me. My sympathy for other parents like me always

encourages me to be measured when advoctaing anything that has helped

Charlie. I think we should all be cautious even if we feel confident.

Would we honestly rather be right or be kind?

FWIW the focus of this site, its philosophy if you will, is fish oils

and therapy alone.

I am on about 8 other sites for autism/apraxia/special needs

and on those site I don't recall ever reading ONE SINGLE post saying

that a child was substantially cured with fish oils and therapy

alone.

Surely using this site on which to judge the efficacy of fish oils

alone is( to use 's analogy) a bit like asking the audience of

american idol who amongst them likes horribly affected pop

performances by nauseatingly pretentious twenty-somethings.

I am guessing you would be more like to get a majority yes result

than if you ask the audience of the Royal Opera House.

I ,like , stay here to try and add some hope to those who need

more than EFA@S and therapy. And I think we are a pretty large and

growing group.

Regards

Deborah

[Guest guest]

Hi Kerri-

Great, I'm glad you are trying the liposomal glut! I give it to my

kids in a little grape juice - that seems to hide the flavor enough,

though I have them use a straw because the smell is a turnoff, not

just the taste. I had to use 1/2 tsp 2x/day to see results. I take the

liposomal glut myself, and I think the grape juice covers it better

than orange.

good luck!

>

> Hi ,

>

> I second your hopes that parents will search beyond fish oil for

> other helpful treatments for their children if they don't see the

> miraculous results from them. I think I can also understand where

> 's coming from. She's seen enough children helped by EFAs, she

> really wants to make sure that everyone gives them a good try (and I

> couldn't agree more - it's sad to think about the parents and

> children out there who don't even know to try EFAs much less all of

> the other stuff!). I don't think that your messages are competing,

> it's just that one is for the newly diagnosed, and one is for people

> with less-than-spectacular results from EFAs.

>

> , it was your past messages that motivated me to search outside

> of this group for other treatment options, and I thank you for it.

> We are currently GFCF and use fish oil (3 Pro-EFA and 1 Pro-EPA per

> day), carn-aware (2 per day), epsom salt baths, and grapefruit seed

> extract. We just purchased some liposeutical glutathione, and I

> have a question for you or anyone else who's tried it (I think you

> know where this is going). How the heck do you disguise the

> stinkyness? The bottle says orange juice, but Meg doesn't drink

> that. I can't even put a fish oil capsule in her grape juice she

> flips out. I haven't tried anything yet because if some kind of

> food or drink offends her good luck getting her to eat or drink it

> again!

>

> Thanks for any advice,

>

> Kerri

>

[Guest guest]

Deborah I agree too. Fish oils are not a cure and don't work for

everyone and may not work alone for some.

As far as I know nobody in this group including me said fish oils

are a cure and I never said that fish oils " work " for all. I did

say they work for almost all and backed up why I said that. Also as

I've said many times including quite a few times in the past few

messages I've posted on this, if as says you live in an area

where you don't have a support group around -you probably live in an

area where there are not lots of other apraxic children around...and

then the chances of the fish oils working lowers for some reason.

But even then, they still work for the majority and of course in my

opinion are worth at least trying. Some of you may or may not need

to put your child on special diets or take bio medical approaches -

when we had local large support meetings which was when all that was

in the earlier stages -that method worked 50% of the time and it was

expensive and complicated. The fish oils I gave the percentage on -

once again 80 + percent of the time. At times when things are too

easy -or too cheap, one forgets the value. If you are thirsty you

can just drink water for example. (the well is dry example)

Apraxia is not curable, nobody including me said it was. What I

said a few times recently is that EFAs appears to help with

acceleration of progress. Communication is what this group is about

and quite frankly being we all deal with children with communication

issues I find it disconcerting that I have to repeat myself over and

over to be understood by some here. Of course I'm aware that

apraxia is not as of yet curable, this is why I have said over and

over that the name childhood apraxia of speech is ridiculous. One

isn't cured of apraxia, one overcomes it.

And on a final note nobody here said to explore just fish oils. But

on the other hand you may not want to chant and drink eye of newt if

all you need is fox glove, so don't be angry at those that don't

need to. (another recent archive I've tried to explain this

topic) Also, I want to stress not to just go the alternative route in

lieu of therapy. The brain responds to multiple stimuli and

appropriate speech and occupational therapy is a given no matter

what other alternatives you may explore.

We all have opinions and I understand some of you must be frustrated

that you have to do so much more, spend so much more, restrict your

child, and still you may not see the same results of those with

children that just a few measly drops of fish oils a day work for

who don't have to put their child on other supplements or special

diets for them to work. See me, I always look for the easy way when

I can find it and don't assume that makes the journey any less

worthwhile. We are all heading toward the same goal aren't we? If

a bunch of us get to take a short cut and don't have to do anything

but fish oil and therapy for the most part -then so be it.

And fish oils do have a down side. They stink and get no respect.

=====

[Guest guest]

We don't have any definitive answers about the causes or underlying

medical problems associated with apraxia. I don't think response to

fish oil can be used as a diagnostic tool for " pure " apraxia. There

may well be multiple (even many) subgroups of children with apraxia

who have different underlying issues, and the things that work for one

group may not work for another.

I'm not saying that fish oil is bad, or that it doesn't help some kids

a lot. I'm just saying that it did not help my child a lot, and she

has now recovered completely with the use of other approaches and

supplements. This suggests to me that possibly for other children with

apraxia who do not respond well to fish oil, there are other

supplements that might be useful. I'm not sure why this suggestion -

which is based on my experience with my own child - has caused such a

strong reaction. Shouldn't we all be encouraging parents to keep

looking for answers if the first thing they try doesn't work?

>

> Just my observation - but I may be wrong. It seems that those who are

> benefiting most from omegas are children with pure apraxia of

speech. There

> are many families of children with a wide variety of issues on this

list.

> Many of the posts expressing disappointing results seems to come from

> families of children with autism as well as apraxia, and other

neurological

> conditions. As I'm trying to understand this condition of apraxia

better,

> I'm realizing that there are a group of children who do clinically sound

> very similar. They have varying degrees of apraxia of speech, low

tone and

> SID issues (+/- global apraxia/poor coordination). They are in fact so

> similar - that I really suspect that there is a common mechanism of

disease

> here. Although these conditions are also common in autism, autism is

a very

> different diagnosis than pure CAS - with a set of its own issues -

mainly

> social and behavioral. Differentiating one from the other is also

difficult

> at early ages, because there are behaviors in apraxic children that are

> reactive to frustration etc - that may resemble autistic behaviors -

that

> improve/disappear once the lines of communication are open. Apraxic

children

> desperately want to communicate, whereas the missing desire to

communicate

> is a part of autism. I have heard the sentiment from some on this

list that

> apraxia is " on the spectrum " - but whatever you want to call it -

it really

> is a completely different condition with some shared aspects.

Lumping all

> these children into one basket for therapeutic approach is not

necessarily

> sound or realistic. Certainly if something works in one communication

> disorder (and is benign enough) - makes sense to try it, just in

case. But

> if it doesn't work, one needs to keep looking. There is no doubt

that autism

> needs a very different approach than CAS. I don't thing anyone will

argue

> that omega -3, speech and OT is sufficient for an autistic child.

But it is

> likely the best approach for an apraxic child who is not on the

spectrum -

> at least by the diagnostic criteria of CAS that most developmental

> pediatricians would use.

>

> Like giving an antibiotic to a child with a high fever and the flu

> virus...it is not going to do anything to help them get better. That

child

> may look very similar to the child with a strep throat

infection...where the

> same antibiotics are the treatment of choice.

>

> Although many have focused on the similarities of these conditions,

it is

> important from a mechanistic perspective to also look at the

differences.

> Hopefully someday we will have more information. A great deal may be

learned

> about autism by investingating etiologies of apraxia (CAS) and how

they may

> be both similar and differ from autism on a molecular/mechanistic

level. And

> approaches to apraxia many help apraxia in whatever situation it is

found.

> But they are different conditions, as are seizure disorders etc. In the

> meantime - we communicate as families in attempt to learn more for our

> children and help others who are just starting out because the whole

thing

> is incredibly overwhelming, with very few places to turn. -

[Guest guest]

Hi

blimey - I was supporting who I think made the point better

than i did.

You focus on my use of the word cure but I simply didn't post cure as

I usually do which is 'cure' - meaning where a child is substantially

improved to the extent that apraxia is no longer a primary issue for

them or that they may even move out from that diagnosis. Whether fish

oils are a CURE or not was not my substantive point. My substantive

point ( gosh look at me repeating myself LOL !) was should we present

fish oils/conventional therapy as the ONLY thing the vast MAJORITY of

our kids need to significantly improve ?

I posted only as a request on behalf of the parents like me - not as

a means of arguement and counter arguement. For me it is a question

of being kind.

I have recommended this site probably to twenty or thirty parents of

kids with new diagnosis and would wish to continue to do so. I love

this site and have been here several years now. I think you can get a

quality of information and experience about apraxia here.And the

people here are great - bright, helpful,informative and open.

I am just personally very wary of reading posts that seem definitive

that if your child takes EFA's/therapy they will also certainly be

substantially improved and quickly. And that EFA's and therapy are

likely all they will need. I don't see how presenting things like

that helps anyone - I honestly don't- although I am quite prepared

to accept that I may be in the minority on this.

I tend to send people to the Durham info ( we Brits like our info

with a Brit accent) and tell them that EFA's are fab , they may well

help, they are good for us all anyway and that they are accessible

and easy and well worth a good shot and that there is heaps more

research out there to back that up as a really good option.

Why does it have to be more than that? Those who try and get the

result will need no further encouraging and those that don't will not

feel that they are failing.

I understand you may be finding it frustrating to have to keep

repeating yourself - i am pretty sure that i didn't suggest anywhere

that I am angry that some people get huge help just through fish

oils - of course communication is extremely complicated and when it

is in email we lose all gesture and tone but I think I said something

about how I cheer each positive results post which ( sad creature I

am I actually do). I am not cross or upset about the road I take with

Charlie I just recall those first dark months and I honestly think if

I had come here then I would have been made more depressed rather

than encouraged. Thats not why we are all here is it?

That is why I think these issues are important ( and why I haven't

been able to bow to the " why can't we just drop this " postings) and

why I was just asking could we just be a bit more measured. I have no

doubt that I am irritating but I am not intending to be so - i am

just trying to discuss an issue close to my heart and surely none of

us are ever regarding these issues personally? We are here to help

our kids and each other and we discuss and exchange in order to do

that better?

regards

Deborah

BTW - it is strange but actually having to persue dietary and

biomedical with Charlie is not something that i regard at all

negitively. You may be surprised ( I think I am actually) but i think

my understanding of Charlies dietary issues and the understanding of

decent nutrition and the role it plays in behaviour and development

is a great gift and i feel much luckier to have been taken down that

road than those who haven't. I would not change what I know now and

ALL of my family - not just Charlie - are the beneficiaries

[Guest guest]

Deb does blimey mean the same thing as Jeez Louise? )

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[Guest guest]

hey ,

not sure - does Jeez Louise mean the same thing as Gordon !?

One day someone really should do a yank/brit brit/yank dictionary.

I've thought that ever since an American exchange student at my

school made reference to her fanny. That is Sooooooo much ruder over

here !! Two countries divided by a common language eh

love Deborah

>

> Deb does blimey mean the same thing as Jeez Louise? )

>

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