Re: Take it easy on the AK Group!

[Guest guest]

Yes thank goodness that my child is one of the two that responded to

EFAs right? Because after all the odds are what? One in ___?

What?

I know far more than you do apparently about what does and doesn't

get posted at apraxia kids " moderated " list.

I was part of apraxia kids until somehow was unsubscribed years

ago. As were many of my friends part of apraxia kids grouplist who

are either still members there or not. Mikel who co founded

apraxia kids (and who built the original awesome website and hosted

it for like 7 years with her own families monies, and with no

financial compensation at all -like all of us still work with

CHERAB) Today apraxia kids or childhood apraxia speech association

casana or whatever you call it -the people who run it are salaried

by the Hendrix Foundation.

Mikel who co founded apraxia kids and built the apraxia kids

website resigned from casana and her salary she got for about a year.

Why? I know do you?

Mikel has also built the new CHERAB website

http://www.cherab.org and the Speechville website

http://www.speechville.com which she is co founder of. Mikel I

agree is awesome and a " behind the scenes " person who deserves a

huge amount of respect and who nobody knows. She doesn't care but I

do. Mikel co founded Apraxia Kids -did you know that?

At the most comprehensive website for apraxia as they say or used to

call themselves -is there any links for The Late Talker book? The

best selling book for speech delays/disorders in children -and by

far the best selling for apraxia.

http://www.speech-express.com/late.talker.html

The Contemporary Pediatrics article? Which was a feature article

for a pediatric trade magazine?

Cover feature article by Late Talker co-author Marilyn Agin MD

http://www.contemporarypediatrics.com/contpeds/article/articleDetail.jsp?id=1327\

20

Parent guide of article by Late Talker co-author

[Guest guest]

, and anyone else,

I dont belong to this group to hear all of this commotion. I belong to it

for knowledge about apraxia, I didnt know that AK was at all connected, nor do

I care. But this is just nonsense, this big looonngg post that I had to

weed through. Quite frankly I am one that the EFA's didnt work for my son, but

Im still here. When I first started EFA's with my son, I asked many

questions, including, will it make his seizures worse, I was told no, it

shouldnt,

but it did, according to the last 2 EEG's they were worse, it also didnt have

any effect on his speech, motor skills or anything else. Did I take it out on

[Guest guest]

I can tell you from experience that the moderator changed my

original message before it was posted, because I discussed something

I guess I wasn't suppose to.

Tina

>

> Yes thank goodness that my child is one of the two that responded

to

> EFAs right? Because after all the odds are what? One in ___?

> What?

>

> I know far more than you do apparently about what does and doesn't

> get posted at apraxia kids " moderated " list.

>

> I was part of apraxia kids until somehow was unsubscribed years

> ago. As were many of my friends part of apraxia kids grouplist

who

> are either still members there or not. Mikel who co founded

> apraxia kids (and who built the original awesome website and

hosted

> it for like 7 years with her own families monies, and with no

> financial compensation at all -like all of us still work with

> CHERAB) Today apraxia kids or childhood apraxia speech

association

> casana or whatever you call it -the people who run it are salaried

> by the Hendrix Foundation.

>

> Mikel who co founded apraxia kids and built the apraxia kids

> website resigned from casana and her salary she got for about a

year.

> Why? I know do you?

>

> Mikel has also built the new CHERAB website

> http://www.cherab.org and the Speechville website

> http://www.speechville.com which she is co founder of. Mikel

I

> agree is awesome and a " behind the scenes " person who deserves a

> huge amount of respect and who nobody knows. She doesn't care but

I

> do. Mikel co founded Apraxia Kids -did you know that?

>

> At the most comprehensive website for apraxia as they say or used

to

> call themselves -is there any links for The Late Talker book? The

> best selling book for speech delays/disorders in children -and by

> far the best selling for apraxia. http://www.speech-

express.com/late.talker.html

> The Contemporary Pediatrics article? Which was a feature article

> for a pediatric trade magazine?

> Cover feature article by Late Talker co-author Marilyn Agin MD

>

http://www.contemporarypediatrics.com/contpeds/article/articleDetail.

jsp?id=132720

> Parent guide of article by Late Talker co-author

[Guest guest]

Wow!

Well now, where do I begin in reponse to this tirade? I know

nothing of anything that has gone on or does go on behind the scenes

between your two groups. ly, I DID NOT want to know what you

just told me. It makes both " groups " look shallow and petty, and it

helps none of us in our quest to help our kids. But in reponse to

your personal attack on me, you said :

" Yes thank goodness that my child is one of the two that responded

to EFAs right? Because after all the odds are what? One in ___?

What? "

What I had originally said was:

" It is quite possible that for every child like 's or 's

who show DRAMATIC improvements on EFAs, there is another who shows

not much at all. "

Had you taken the time to carefully read what I said, it certainly

was NOT that only two children in the history of the world had been

helped with EFAs. But that it is possible that only 50% are helped.

I'm sure Mikel is a lovely person, but I have never heard of

her before today. She apparently is one of those generous, behind-

the-scenes people who works tirelessly for no credit whatsoever.

Her history with CASANA is really none of my business. It is also

simply unfair to imply that if someone else is getting paid for

their work that it is less meaningful.

You say " I know far more than you do apparently about what does and

doesn't get posted at apraxia kids " moderated " list. " Well, I

suppose you do. Because despite your baseless assertion of " Are you

on salery too? Even if you are -I guess your OK as long as you post

something sharing their side huh? " , I am NOT on their salary. I am

an incredibly frustrated, fearful, and pissed-off stay-at-home mom

who will read anything and go anywhere to help my child. I am not

a spy. I could care less what your petty differences are. I just

want to help my son.

Your say, " At the most comprehensive website for apraxia as they say

or used to call themselves -is there any links for The Late Talker

book? " Yes, I would assume that you also have many links to their

web site, as well.

" Can you post about CHERAB or "

[Guest guest]

,

Why are you so angry? Why are you taking it out on a parent who, in

my opinion,is just stating that she was helped by another list and

that not all kids respond to fish oil? I think it is far more

respectful and productive to talk without using sarcasm and throwing

fruit at a parent.

Your group has been helpful to many parents. The apraxia kids

grouplist has been helpful to many parents. Can we all just agree

that we all have different experiences?

Here are the results of a poll from this website in which parents

answered how they child had responded to EFA's. (Yes, there were

more than 2 children that responded to EFA's but there were more

than just a handful that didn't. Can we get over that and move on?)

outstanding change 15 votes (9 %)

significant change 24 votes (14%)

moderate change 24 votes (14%)

subtle change 12 votes (7%)

no change 9 votes (5%)

not sure 20 votes (12%)

just started 59 (36%)

Several times I have seen parents post that their child didn't

respond to the fish oil or that their child had some negative

beahvior after starting. I do think that those parents end up moving

on to group that better fits their family needs and there is nothing

wrong with that. Likewise there are some parents that leave the

apraxia-kids list because it no longer meets their needs.

On the topic of moderation- I greatly appreciate that you post all

points of view! Thanks for all you do!

Stabb

[Guest guest]

The fact that so many kids respond does beg the question of " what is the

mechanism???? " And a good point brought up - is the mechanism of apraxia

different in the child who doesn't respond to EFAs? Chances are there is

something different going on in kids with verbal/motor apraxia, hypotonia

and SID vs kids with this and other symptoms. No doubt there is lots of

overlap. Certainly if we knew the mechanism(s), therapies could be tailored

towards addressing them. Somehow a deficiency in omega 3 for whatever reason

is contributing to symptoms in a majority of our kids (even by the stats in

the poll below).

If you look at these poll numbers below - you can't count the " just started

so no comment " in the final calculation. Those " not sure " could be grouped

in the no change - in our case there was no doubt that something was going

on...and even more frightening that something was wrong when we stopped and

saw regression. (I wanted an emergent MRI to figure out what was going on

with my son - still not believing the regression was linked to the

withdrawal of fish oil until we restarted with another formulation and saw

regained improvement than soon surpassed where we were before). So if

someone is " not sure " I would say its probably not doing much. Some

recalculations (n=104)...this gives a 23% failure rate, and a 77% success

rate, with over 60% experiencing moderate to outstanding change. This is not

anecdotal when the numbers reach the level they have among the apraxia

network of families - even if it hasn't been studied in a strictly

controlled trial (Controlled trials would be ideal yes, but there is no

money and not much interest out there for this sort of research,

unfortunately). Below you have a sampling of over 100 families. That's

actually pretty good. With a > 60% chance of some degree of success, and

some reports are closer to 90% by 's numbers - I think those are still

pretty good odds.

Is there any more information from this poll? Like other co-existing

conditions in addition to apraxia? Is there any way to tease out whether the

children not responding also had seizures or cognitive delay/MR, autism,

cerebral palsy or other disabilities? Is there a link to this information

and the poll questions & results?

I am so thankful that we are among the lucky ones. But had this information

and the EFA success stories not been posted - I'm sure we would be sitting

with the same 3 word approximations we had for 10 months, lots of grunting,

too many falls, a (erroneous) mod cognitive delay dx that might stick, and a

bleaker prognosis for my boy. This information needs to get out. And

certainly if families are witnessing side effects after years of treatment,

that also needs to be made public. An example: Singulaire is a (commonly

prescribed) asthma drug that only about 50% asthmatics respond to. However

it is life-changing in the families who are responders. It is often given

as a trial run, and those who benefit usually know it pretty early on. When

it doesn't work, it is stopped and the family moves on...no harm done. So

EFA may not work for everyone, but it is certainly worth a trial. -

[ ] Re: Take it easy on the AK Group!

,

Why are you so angry? Why are you taking it out on a parent who, in

my opinion,is just stating that she was helped by another list and

that not all kids respond to fish oil? I think it is far more

respectful and productive to talk without using sarcasm and throwing

fruit at a parent.

Your group has been helpful to many parents. The apraxia kids

grouplist has been helpful to many parents. Can we all just agree

that we all have different experiences?

Here are the results of a poll from this website in which parents

answered how they child had responded to EFA's. (Yes, there were

more than 2 children that responded to EFA's but there were more

than just a handful that didn't. Can we get over that and move on?)

outstanding change 15 votes (9 %)

significant change 24 votes (14%)

moderate change 24 votes (14%)

subtle change 12 votes (7%)

no change 9 votes (5%)

not sure 20 votes (12%)

just started 59 (36%)

Several times I have seen parents post that their child didn't

respond to the fish oil or that their child had some negative

beahvior after starting. I do think that those parents end up moving

on to group that better fits their family needs and there is nothing

wrong with that. Likewise there are some parents that leave the

apraxia-kids list because it no longer meets their needs.

On the topic of moderation- I greatly appreciate that you post all

points of view! Thanks for all you do!

Stabb

[Guest guest]

I am so very sorry! I didn't mean to come across as attacking

someone here while I was defending our group, and my beliefs. I

wrote what I did while being fully aware of the pain, the hurt, and

the many libel accusations they have caused over the years -and you

know how they say you should never say something while you are

upset. Not that what I said wasn't all absolutely and painfully

true -but I didn't mean to hurt . It's obvious most here won't

know about all of the behind the scenes things (and probably never

need to) It may appear petty and shallow to those that don't know -

but to the people that have been hurt it's all very real. I think

about the law suit from them against Mikel who co founded

apraxia kids website after she resigned from their casana

board ...and not sure what monies were used if any from casana to

sue . And if they were monies from casana those are monies that

could have gone to therapy, or children in need, or even for

goodness sake EFA research! But no matter where the monies came

from someone still there at casana today sued Mikel who co

founded and hosted the site that put apraxia on the map -that put

THEM on the map! To make it clear was not looking for

anything -she was sued by them. How dare they sue THE person that

built with her own talent and hosted for around 7 years the website

with her own families monies? And even though doesn't talk

about the case with any of us about who won - I know that

http://www.apraxia.org domain that owned and owns -which

used to point to casana, and that they wanted, and was part of the

suit, now points to CHERAB. wanted to keep information at

apraxia kids to " help the parents " I know that too. She has a good

heart no matter how much she was hurt.

You say it's none of your business. It's all of our business.

That's the problem is when people look away while someone is being

discriminated against, or hurt - we all are hurt. If it's a

nonprofit discriminating, or hurting, it's unethical. Why not say

something and stand up for what is right? As we know from our

children silence is NOT golden. Why isn't anything from CHERAB, The

Late Talker book (or me) talked about at casana or apraxia kids?

Why isn't anyone upset that all information can't be discussed and

out there? And what about me being put down? Am I just supposed to

smile and say nothing? Is that how I dealt with people judging my

son? Is that how any of you deal with it?

Again why did the co founder of apraxia kids Mikel resign from

the casana board? I don't want to say yet but can give you an

idea. There's just so much stuff you don't know unless you know and

believe me I was shocked and hurt to learn it the hard way too. I

guess you wouldn't understand unless for just a few examples I'd

never do- I went to the archives and deleted every message you ever

posted here including your first messages as a desperate parent just

looking for help, or any message that mentions your name is deleted

too. That I put your name into the server as a curse word so that

the minute anyone mentioned your name anywhere in a message it would

be bounced. Or I advised anyone that spoke with you to " be

careful " Be careful of what? Me? I mean I know I've been a soccer

mom and you don't mess with soccer moms, and especially one from NJ -

but still!

There was a time that the majority believed the world was flat.

Thank goodness in that case that there wasn't a grouplist trying to

still hide information showing it's round.

My message in spite of all is that all should work together. There

are a number of us from a number of nonprofits that believe this.

That's why we started Speechville -to work together.

" Speechville Express

The Speechville Express web site is dedicated to those who struggle

with communicating, as well as the parents and professionals that

care for them.

Speechville was founded by a number of individuals who share the

belief that individuals and organizations working together help

bring even greater awareness and help to those with communication

problems:

[Guest guest]

,

If you click on " polls " on the homepage of this internet group, you

can view all the polls that have been done with this group. There

are other things like the " files " section too which has lots of

research.

>

> The fact that so many kids respond does beg the question of " what

is the

> mechanism???? " And a good point brought up - is the mechanism of

apraxia

> different in the child who doesn't respond to EFAs? Chances are

there is

> something different going on in kids with verbal/motor apraxia,

hypotonia

> and SID vs kids with this and other symptoms. No doubt there is

lots of

> overlap. Certainly if we knew the mechanism(s), therapies could be

tailored

> towards addressing them. Somehow a deficiency in omega 3 for

whatever reason

> is contributing to symptoms in a majority of our kids (even by the

stats in

> the poll below).

>

> If you look at these poll numbers below - you can't count

the " just started

> so no comment " in the final calculation. Those " not sure " could be

grouped

> in the no change - in our case there was no doubt that something

was going

> on...and even more frightening that something was wrong when we

stopped and

> saw regression. (I wanted an emergent MRI to figure out what was

going on

> with my son - still not believing the regression was linked to the

> withdrawal of fish oil until we restarted with another formulation

and saw

> regained improvement than soon surpassed where we were before). So

if

> someone is " not sure " I would say its probably not doing much.

Some

> recalculations (n=104)...this gives a 23% failure rate, and a 77%

success

> rate, with over 60% experiencing moderate to outstanding change.

This is not

> anecdotal when the numbers reach the level they have among the

apraxia

> network of families - even if it hasn't been studied in a strictly

> controlled trial (Controlled trials would be ideal yes, but there

is no

> money and not much interest out there for this sort of research,

> unfortunately). Below you have a sampling of over 100 families.

That's

> actually pretty good. With a > 60% chance of some degree of

success, and

> some reports are closer to 90% by 's numbers - I think those

are still

> pretty good odds.

>

> Is there any more information from this poll? Like other co-

existing

> conditions in addition to apraxia? Is there any way to tease out

whether the

> children not responding also had seizures or cognitive delay/MR,

autism,

> cerebral palsy or other disabilities? Is there a link to this

information

> and the poll questions & results?

>

> I am so thankful that we are among the lucky ones. But had this

information

> and the EFA success stories not been posted - I'm sure we would be

sitting

> with the same 3 word approximations we had for 10 months, lots of

grunting,

> too many falls, a (erroneous) mod cognitive delay dx that might

stick, and a

> bleaker prognosis for my boy. This information needs to get out.

And

> certainly if families are witnessing side effects after years of

treatment,

> that also needs to be made public. An example: Singulaire is a

(commonly

> prescribed) asthma drug that only about 50% asthmatics respond to.

However

> it is life-changing in the families who are responders. It is

often given

> as a trial run, and those who benefit usually know it pretty early

on. When

> it doesn't work, it is stopped and the family moves on...no harm

done. So

> EFA may not work for everyone, but it is certainly worth a trial. -

>

>

> [ ] Re: Take it easy on the AK Group!

>

>

> ,

>

> Why are you so angry? Why are you taking it out on a parent who, in

> my opinion,is just stating that she was helped by another list and

> that not all kids respond to fish oil? I think it is far more

> respectful and productive to talk without using sarcasm and

throwing

> fruit at a parent.

>

> Your group has been helpful to many parents. The apraxia kids

> grouplist has been helpful to many parents. Can we all just agree

> that we all have different experiences?

>

> Here are the results of a poll from this website in which parents

> answered how they child had responded to EFA's. (Yes, there were

> more than 2 children that responded to EFA's but there were more

> than just a handful that didn't. Can we get over that and move on?)

>

> outstanding change 15 votes (9 %)

> significant change 24 votes (14%)

> moderate change 24 votes (14%)

> subtle change 12 votes (7%)

> no change 9 votes (5%)

> not sure 20 votes (12%)

> just started 59 (36%)

>

> Several times I have seen parents post that their child didn't

> respond to the fish oil or that their child had some negative

> beahvior after starting. I do think that those parents end up

moving

> on to group that better fits their family needs and there is

nothing

> wrong with that. Likewise there are some parents that leave the

> apraxia-kids list because it no longer meets their needs.

>

> On the topic of moderation- I greatly appreciate that you post all

> points of view! Thanks for all you do!

>

> Stabb

>

>

>

>

>

[Guest guest]

Halley http://www.debtsmart.com/talk/halley.html has a mom named

Liz -who was a moderator here that we kind of lost track of when she

moved. She was trying to do a poll online at her site for EFAs that

I recall but I can't find it now.

http://kidstalkback.tripod.com/kidstalkback/

Halley's new page is

http://kidstalkback.tripod.com/halleysonlinediary/ (didn't find the

EFA pole here either)

Halley's online diary from " pre ProEFA till today "

http://kidstalkback.tripod.com/halleysonlinediary/id15.html (she

wanted to document online her experience on ProEFA -pretty humorous

the way she writes too so fun to read)

The one professional anecdotal study -the results were around 19 out

of 20. In the University of Arizona study (for autism even though

it was inspired by Goodman's child who has apraxia who learned

about EFAs here) was around 19 responding out of 20.

The pole at this site most don't know is there and haven't for

possibly years. I forgot it was there myself it was put up so long ago.

Some voted when it was put up and we remembered it was there.

Liz had way more responses as hers was promoted back then all the

time. Just emailed Liz -or I guess one of us can check the

archives. Or perhaps we need to do a new survey huh?

=====

[Guest guest]

I too am tired of the pickering, you seem overly sensitive to posts on

this site. I feel

the Dr. Agin and AK Group replies by you could have been handled in a much more

mature

manner. I joined this group to help my severely Apraxic son and learn everything

I can that

may help. My son falls into the category of not much if any imporvement but he

is still on

it because we have no negative side effects and I am prayful we will see a

surge. Please try

to be more respectful in your replies to parents who are honestly just trying to

help our

children. I felt personally attacked by your response to because when I

read her

original post I related to her and in no way felt she was attacking you or this

group. Please

don't alienate us, we just want to help our children the same as you. Also know

that we are

forever thankful to you for keeping this site running and free for all us.

God bless, Tara

[Guest guest]

,

I think the best way to handle this situation is not to talk about

what Mikel did or how they sued her. Many parents on here who

aren't even sure of what you are talking about, myself included.

Don't talk to us about being silenced on apraxia-kids as we are

listening to you here where your voice is free. Take these issues

up with those parents/speech therapists at apraxia-kids that have

hurt you. Talking about it with us who support you just feeds

negative energy and encourages an " us-and-them " mentality. That is

not good for anyone.

We are all hear to get support, talk openly and stay positive about

our kids. Let's keep this group as positive and informative as we

can. Can we have a group hug and move on?

Stabb

>

> I am so very sorry! I didn't mean to come across as attacking

> someone here while I was defending our group, and my beliefs. I

> wrote what I did while being fully aware of the pain, the hurt,

and

> the many libel accusations they have caused over the years -and

you

> know how they say you should never say something while you are

> upset. Not that what I said wasn't all absolutely and painfully

> true -but I didn't mean to hurt . It's obvious most here

won't

> know about all of the behind the scenes things (and probably never

> need to) It may appear petty and shallow to those that don't

know -

> but to the people that have been hurt it's all very real. I

think

> about the law suit from them against Mikel who co founded

> apraxia kids website after she resigned from their casana

> board ...and not sure what monies were used if any from casana to

> sue . And if they were monies from casana those are monies

that

> could have gone to therapy, or children in need, or even for

> goodness sake EFA research! But no matter where the monies came

> from someone still there at casana today sued Mikel who co

> founded and hosted the site that put apraxia on the map -that put

> THEM on the map! To make it clear was not looking for

> anything -she was sued by them. How dare they sue THE person that

> built with her own talent and hosted for around 7 years the

website

> with her own families monies? And even though doesn't talk

> about the case with any of us about who won - I know that

> http://www.apraxia.org domain that owned and owns -which

> used to point to casana, and that they wanted, and was part of the

> suit, now points to CHERAB. wanted to keep information at

> apraxia kids to " help the parents " I know that too. She has a

good

> heart no matter how much she was hurt.

>

> You say it's none of your business. It's all of our business.

> That's the problem is when people look away while someone is being

> discriminated against, or hurt - we all are hurt. If it's a

> nonprofit discriminating, or hurting, it's unethical. Why not say

> something and stand up for what is right? As we know from our

> children silence is NOT golden. Why isn't anything from CHERAB,

The

> Late Talker book (or me) talked about at casana or apraxia kids?

> Why isn't anyone upset that all information can't be discussed and

> out there? And what about me being put down? Am I just supposed

to

> smile and say nothing? Is that how I dealt with people judging my

> son? Is that how any of you deal with it?

>

> Again why did the co founder of apraxia kids Mikel resign

from

> the casana board? I don't want to say yet but can give you an

> idea. There's just so much stuff you don't know unless you know

and

> believe me I was shocked and hurt to learn it the hard way too. I

> guess you wouldn't understand unless for just a few examples I'd

> never do- I went to the archives and deleted every message you

ever

> posted here including your first messages as a desperate parent

just

> looking for help, or any message that mentions your name is

deleted

> too. That I put your name into the server as a curse word so that

> the minute anyone mentioned your name anywhere in a message it

would

> be bounced. Or I advised anyone that spoke with you to " be

> careful " Be careful of what? Me? I mean I know I've been a

soccer

> mom and you don't mess with soccer moms, and especially one from

NJ -

> but still!

>

> There was a time that the majority believed the world was flat.

> Thank goodness in that case that there wasn't a grouplist trying

to

> still hide information showing it's round.

>

> My message in spite of all is that all should work together.

There

> are a number of us from a number of nonprofits that believe this.

> That's why we started Speechville -to work together.

>

> " Speechville Express

>

> The Speechville Express web site is dedicated to those who

struggle

> with communicating, as well as the parents and professionals that

> care for them.

>

> Speechville was founded by a number of individuals who share the

> belief that individuals and organizations working together help

> bring even greater awareness and help to those with communication

> problems:

>

>

[Guest guest]

Why isn't anyone upset that all information can't be discussed and

> out there?

I don't usually have much to say when discussions like these are

going on, but it did bother me when my message got bounced. I was

trying to help someone by giving them information on EFA's. At the

time, I didn't get it, but I do now. I remember which link I sent.

And that is when it becomes a problem. Why must other people suffer?

I remember how I felt when I figured out Landon didn't just have a

speech delay. That feeling of I must learn everything I can possibly

learn, and read everything I can possibly get my hands on. I did

it! We all were there at one time. When there are restrictions on

subjects, Who misses out, those new parents that are so desprate for

information. And I think some that are getting upset here need to

remember you don't have to read every post. Read about what you are

looking for and ignore the rest. There are some subjects on here

that I don't even read because it doesn't have anything to do with

my son. I don't knock it and say lets move on. I ignore them and I

move on.

Tina

>

>

> My message in spite of all is that all should work together.

There

> are a number of us from a number of nonprofits that believe this.

> That's why we started Speechville -to work together.

>

> " Speechville Express

>

> The Speechville Express web site is dedicated to those who

struggle

> with communicating, as well as the parents and professionals that

> care for them.

>

> Speechville was founded by a number of individuals who share the

> belief that individuals and organizations working together help

> bring even greater awareness and help to those with communication

> problems:

>

>