RE: Re: How do you Know What's Helping?

[Guest guest]

,

I am new to your group. I was looking for a totally different topic when I

found this group.

I have a daughter with Rett. Where can I find more about the oils? I have

heard good health things about fish oils before maybe now is the time to try

these. I would not expect to see great improvement at her age but even just a

little would be nice.

Judy

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 "

[Guest guest]

I second this email.

Michele

[Guest guest]

Hello, I dont want to poke my nose in too much on this, but , when you

say the " majority " , do you actually have a number of how many people utilizing

fish oils have been successful, as opposed to how many have not been? It

seems lately that quite a few posts recently have been about being

unsuccessful,

including my son. Although I still squeeze the capsules every once in a

while, but not on a regualr basis any longer, because of the complications that

we've experienced. By no means am I am saying that I dont think fish oils

should be used by most people, it should be, part of a healthy diet, after all

-

find illness in the eskimos! lol ! Omegas should be part of a healthy diet.

But I'm just curious, when you speak for the " majority " do you actually have

the numbers? Or do you just go by posts, etc?

Thanks,

Michele

[Guest guest]

,

Thanks for sorta clearing that up for me. I was just curious, I dont think

fish oil only helps for apraxia, it is just part of a good nutrition program

as far as I am concerned, even though it was difficult to get my sons seizures

under control. But I took some marketing and sales courses a few years ago,

and words like " majority " without actual numbers, and the like are buzz word

tactics, and I just dont want anyone to get the wrong impression, that you

are trying to sell them. I wanted to see or should I say have everyone hear

for themselves once again the numbers because it may very well have a great

" surge " effect for their children, but like you said maybe not for the few. It

is worth trying but I would hate to see anyone with false hopes, and think

" cure " . There have been some " small studies " on ProEFA's but like you said

Folic Acid...etc. So Im glad to hear that 17 out of 19 is the " majority " so Im

glad that you cleared that up for all of the new folks and for me. Thanks

again, Im sure everyone is appreciative.

Michele

>

> 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]

hi claudia-josh is 80 % INTELLIGIBLE AND READY FOR ALL DAY

KINDERGARTEN-- CHARLOTTE

>

> Unfortunately this is not a cure, and I don't think anyone is claiming that

> it is. But it seems to be allowing many children a better chance at a

> normal life. My son is still apraxic...but he is making progress that will

> probably allow him to enter a regular kindergarten and have a fairly normal

> life at this pace. This opposed to very little and very slow progress, which

> is what we were seeing his first 2 years of life. He will always have to

> work harder than others to achieve things we often take for granted. My

> dylexic child will also always have to work harder. But she's a happy well

> adjusted child, and that is the best we can hope for. -

>

>

[Guest guest]

Unfortunately this is not a cure, and I don't think anyone is claiming that

it is. But it seems to be allowing many children a better chance at a

normal life. My son is still apraxic...but he is making progress that will

probably allow him to enter a regular kindergarten and have a fairly normal

life at this pace. This opposed to very little and very slow progress, which

is what we were seeing his first 2 years of life. He will always have to

work harder than others to achieve things we often take for granted. My

dylexic child will also always have to work harder. But she's a happy well

adjusted child, and that is the best we can hope for. -

[ ] Re: How do you Know What's Helping?

>

> " 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]

That's awesome!

Re: [ ] Re: How do you Know What's Helping?

hi claudia-josh is 80 % INTELLIGIBLE AND READY FOR ALL DAY

KINDERGARTEN-- CHARLOTTE

>

> Unfortunately this is not a cure, and I don't think anyone is claiming

that

> it is. But it seems to be allowing many children a better chance at a

> normal life. My son is still apraxic...but he is making progress that will

> probably allow him to enter a regular kindergarten and have a fairly

normal

> life at this pace. This opposed to very little and very slow progress,

which

> is what we were seeing his first 2 years of life. He will always have to

> work harder than others to achieve things we often take for granted. My

> dylexic child will also always have to work harder. But she's a happy well

> adjusted child, and that is the best we can hope for. -

>

>

[Guest guest]

So what your saying is - if your not apraxic and fish oils do not work, then

you are autistic !!! So not true.

Michele

[Guest guest]

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. -

[ ] Re: How do you Know What's Helping?

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]

Thank you, . I don't understand why we keep on beating this subject to

death. With " everything " in life, somethings work for some and not for

others. We are all different; therefore, we are not all going to respond to

stimuli in the same way. Why can't we just leave it at that? Why is it that

one is always trying to disprove the other? Why don't we just read each

other's advice and take it as advice; not the absolute path to take. You

said it best, Apraxia is not curable, it is worked through by all of the

hard work by the children and their advocates!

" kiddietalk "

<kiddietalk@...>

Sent by: cc:

@yaho Subject:

[ ] Re: How do you Know What's Helping?

ogroups.com

03/10/2006 02:35 PM

Please respond to

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]

-

It seems to me that you hit the nail right on the head! Just my 2 cents.

Warm regards,

******************

(Rochester, NY)

Mom to , 2.9 years, Developmental Verbal Dyspraxia

& , 7 months

________________________________

From:

[mailto: ] On Behalf Of

Sent: Friday, March 10, 2006 11:44 AM

Subject: RE: [ ] Re: How do you Know What's Helping?

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]

No - not saying that at all, so please don't misinterpret.

It seems that many of the posts describing minimal response are from

families with kids on the spectrum or with other neurologic issues. If

that's not the case - I'd also like to hear about it. But what I am saying -

because often I see these diagnoses being blended together...is that autism

and apraxia are not the same condition. Although many autistic kids are

apraxic (thus definitely overlap), " apraxia " does not always mean autism,

and approaches will be different for autism vs CAS. I have also agreed all

along, that if omegas are not working, one should keep looking. I think we

are all on the same page here.

My order of omega 3 sat in a box for over a month before I tried it on my

son, because I really did not expect much. Boy was I wrong & I wish I

started it sooner. I'm thrilled its working for us (wish it did work for

everyone), but I'm also trying to understand why its working...and why its

not working for every child. Hopefully someday we will have a better

understanding of this - which will lead to better treatment

options. -

Re: [ ] Re: How do you Know What's Helping?

So what your saying is - if your not apraxic and fish oils do not work,

then

you are autistic !!! So not true.

Michele

[Guest guest]

i agree, i have a 12 yr old who was dx at 3 with verbal apryxia,, everyone has

spent his entire life trying to tell me what im doing wrong ,, iep are a

nightmare ! i also have a 6 yr old grandson who has it but not as bad as my son

... he also has other prob but i cant get anyone outside the family to listen i

just found this site .. would love any advice .. yall are my only sorce of

help.. is there any groups in the kck mo area? thanks tammyyra.bauza@...

wrote: Thank you, . I don't understand why we keep on beating this subject

to

death. With " everything " in life, somethings work for some and not for

others. We are all different; therefore, we are not all going to respond to

stimuli in the same way. Why can't we just leave it at that? Why is it that

one is always trying to disprove the other? Why don't we just read each

other's advice and take it as advice; not the absolute path to take. You

said it best, Apraxia is not curable, it is worked through by all of the

hard work by the children and their advocates!