Fish oil and E is a great thing. I get that. It is likely a whole lot
safer than other stuff. If not a quality doc like Dr. Morris would
not post about it. But posts like this ignore the many who may have
left the board because that combo alone was not enough and it also
excludes the many for whom the formula, as you call it, is only part
of the help the successful kids are getting. There are no studies on
diet and a lot of the other stuff, I get that. I am not saying to
recommend it. Who can? We are all on our own with all of this. What I
am saying is the thousands thing, if it applies, refers to kids not
like the new breed cropping up.
Again, no credibility here I am sure as my kid technically is not
apraxic, not autistic but something light that falls in between the
two thank God and he does have a lot of the things Dr. Morris wants
to study.
Not trying to be disrespectful. Just had to get this off my chest.
Fish oil and E won't cure an underlying gut, allergy or other issue.
It is a bandaid for now and I'd hate for someone for whom it did not
work to feel like they were not part of a club and fail to dig
deeper.
--- In childrensapraxianet
<kiddietalk@
>
> Holly how did your Dan change your fish oil formula and what was
the
> reason? Back a few years ago there were only a few people that
> followed testing to see if a child needed fish oil supplementation
> and if they did -the formula. Since you pretty much know in a day
to
> three weeks what works or not -it's pretty easy for each of us to
> know what formula works or doesn't -so that's the route most of us
> went and over the years thousands of us found out what worked.
> http://www.cherab.
>
> When you are in person groups you get to see what works and what
> didn't. In this group there could be three people that post 90% of
> the messages -that doesn't make their views right -but it 'may'
> appear that way.
>
> The testing to supplement was expensive -complex -and back then had
a
> 50% success rate in comparison to those that just gave fish oil
> supplements where the success rate was over 80% successful -now
again
> this was in the New Jersey area.
>
> I've noticed another difference with the recent thread about fish
oil
> and the "negative" behaviors in that back a few years ago even
those
> parents who had children with changes in behavior they kept their
> child on the oils or lowered the dosage/tweaked the formula..didn'
> just stop them - and as a group everyone encouraged this.
>
> Cut to today...it's all strange in that everyone is much quicker to
> stop fish oils and question if the child is allergic to soy or
lemon
> or milk etc. To me the first question as always would be "does
your
> child had behavior changes after eating a tuna fish sandwich?"
>
> It will be interesting to see if the current group that does so
much
> more in testing in the biomed area than most of us ever did - and
so
> much more in dietary restrictions (milk came up years ago!) has the
> same amazing results in the same short period of time as us "old
> timers" that just took our kids to therapy -traditional speech and
> occupational and some alternative therapies -and gave our children
> fish oils. Back then -fish oils was the "off the wall" thing to
do.
> But it worked. Did it stop working or is it more in fashion to do
> more and spend more -and if that is the case again does it work as
> well? Or are the children in this group a different group? Are
> there any parents who have kids that are not allergic to many foods
> and drinks here? That thought at some point their child was "just"
a
> late talker only to find out there was more. Who's child is normal
> socially -but just has a speech problem -can't talk. Not talking
was
> not linked to autism before -in this group it was mainly linked to
> apraxia. Of course there have always been those children who had
> autism -or autism and apraxia.
>
> Is the group today really made up of more parents of children with
> autism -or does everyone who has a child like my son Tanner who
used
> to just be called "apraxic" now get a diagnosis of autism and
> apraxia?
>
> Below is one archive on an example of exactly what you just said
and
> why biomedical testing for fish oil dosage may not be the way to
go.
>
> ~~~~~~~~~~~~
>
> Below is another parent archive of a surge on EFAs:
> This story again was based on a time when we all knew each other in
> person as a large group from mainly 1999 to 2003. When people post
> here you don't know what's the reality for the group -you do when
> you all know each other in person as a group.
>
> Unless we understand what is going on in our children and can make
> sure there is proper diagnosis/therapies for each -which we don't -
> and we understand what all the many various supplements are doing to
> help or not help, I'm not a huge believer of blood analysis for
> neurological conditions. This is why I choose to stick to those
> therapies/treatment
> that -unless there are medical reasons.
>
> From scientist/mathemati
> Smolyar
>
> "From: Suzanne Smolyar
> Date: Wed Mar 21, 2001 2:36 pm
> Subject: RE: [childrensapraxiane
>
>
> Hi Gloria,
>
> I wanted to say that I know exactly how you feel. Last night at the
> table, Monica's brother (Ari 6.8) began to speak while Monica was
> trying to say something, so she looked at Ari and said in a loud and
> affirmative tone "Shut up Ari, Shut up". We were so excited and
> overjoyed at her using that phrase - we forgot to explain to her
> that it was inappropriate to use at the table and to her family
> members. We just thought it was golden -just like you did.
>
> Here is some background from one of my previous posts that will tell
> you why this is so exciting .
>
> "I am a mother of a beautiful 5-year-old girl, Monica. Since the
> time she was about 11 mo old - I had a feeling that something was
> wrong with fine motor, gross motor and of course speech. Through
> the past 4 years, I have gone to numerous neurologists, best in the
> field, I must add. We have gone non-stop to therapy with Monica,
> but the progress was painfully slow. Monica did not speak- making
> it nearly impossible for us to communicate with her. Everyday at
> night I would kiss Monica, and standing over her head I would
> say, "please start talking tomorrow" - subliminal messages - hoping
> they'd work.
>
> To no avail, my child was just not talking. Therapy helped, but
> progress was limited. I don't want to continue with this sob-story,
> as you probably all understand the fear and frustration in parents
> and the child as well.
>
> After becoming involved with Lisa Geng, and the CHERAB organization
> I began, with Dr. M. Agin's approval, giving Monica Efalex.
> Boy!!!! -the change came literally over night. By profession I'm a
> scientist and a mathematician, and as you all can image don't
> believe in miracles. But this is exactly what it was - a miracle.
> Over a period of 2 weeks Monica's vocabulary began to increase
> exponentially, she was able to repeat sounds and words and
> syllables. The change was so massive that our friends, doctors
> couldn't
> believe it.
>
> Soon after, of course with Lisa's recommendation, I started giving
> Monica ProEFA. --> Once again, like a miracle, Monica started
> putting sentences together. Not 1 to 2 word sentences, but actually
> 4 to 5 word sentences with limited amount of prepositions, this
> happened over the next several weeks.
>
> To give you a clearer picture, we have been on Efalex and then
> ProEFA--> for the past three months. My child went from being non-
> verbal to being a non-stop talker."
>
> Good luck with Bradley,
>
> Suzanne Smolyar
> Executive VP CHERAB Foundation
> http://www.apraxia.
>
> "Suzanne who is CHERAB's former VP now going to medical school based
> on her child and what she saw. With Suzanne's personality -
> observations were not enough and she wanted "fact" "science" and "to
> do the blood work" So she did -which showed her daughter's DHA was
> too high -and to stop the ProEFA that was working so well. Suzanne
> said instead of the one capsule of ProEFA she become a kitchen
> chemist with a drop of magnesium and a drop of this -with all the
> stuff she needed to give Monica. Well Monica didn't regress -but
> she stopped progressing like she did while on the formula that works
> for most of us. Without sharing with any of Monica's MDs -Suzanne
> put her back on the EFAs on in spite of the blood work -Monica
> surged again and nobody can say why. It's driving Suzanne nuts
> still that nobody knows "why?" which is why she is in medical
> school -and she tried to talk me into going with her.
>
> Let me know if anyone has a question for Suzanne and I'll let her
> know so she can answer."
>
> ~~~~~~~~~~~~
>
> =====
> Lisa Geng
> President CHERAB Foundation
> Communication Help, Education, Research, Apraxia Base
> http://www.cherab.
> Co Founder Speechville
> The Pink Mission
> http://www.thepinkm
> 772-335-5135
> "Help give our cherubs a smile and a voice"
>
>
> --- In childrensapraxianet
> wrote:
> >
> > Hi Lisa:
> > Tanner sounds awesome!!! About 8 months ago I took a look at
> Scott's
> > talking page, and listened to Tanner when he was 3 1/2 I think.
My
> son
> > was only 2 1/2 then, had only 5 words, and I so looked forward to
> the
> > days he could count, say his name, please, and thank you,
etc...Adam
> > has done so well in the last 6 months especially, we are up to
about
> > 100 clear words, with approximations and 2-3 word combinations
> > throughout the day...but we seem to have hit a standstill in the
> last
> > few weeks. A DAN! doctor we just saw changed his fish oil dosages
> and I
> > am wondering if that is it. I will wait a little while longer to
> see
> > if that is possible. To hear Tanner at 11 gives me hope and
> > inspiration that my son will someday be able to communicate his
> > thoughts with others. At just 3, he also loves video
> games...something
> > I also said I would not allow. But his older brother Evan (whose
5)
> > loves Star Wars, so they play together, and they are so happy,
and
> Adam
> > is amazing at it! Adam is so special, and I can't wait to know
> what he
> > has been thinking all of this time. I know we have a long way to
> go,
> > and at times I feel so drained about this process, but hearing
> Tanner
> > lifted my spirits today! Thanks so much!
> > Holly
> >
> >
> >
> >
> >
> > --- In childrensapraxianet
> <kiddietalk@
> > >
> > > Tanner got on the phone with Scott today after school. You
can't
> > > hear him as well as you can Scott -but this is an unplanned
phone
> > > conversation. Tanner talks about the Super Bowl -games he
likes
> to
> > > play -and what frustrates him most about speech issues. He's
> pretty
> > > good about knowing how to talk now without 'sounding' apraxic.
He
> > > has a number of strategies. I'm sure as soon as he is a bit
older
> > > and if I ever talked to him about it he'd have a strong opinion
> about
> > > the name "childhood apraxia of speech" as Tanner since 8 didn't
> like
> > > the word "child" and considers himself to be a "young man"
You'll
> > > hear in the following how he presents himself -and in his photo
> (at
> > > just 11 years old) he comes across a bit older than someone
that
> is
> > > 11. He is sitting in the photo next to his older brother
Dakota -
> but
> > > he is just skimming my height at 5 foot 5 inches.
> > >
> > > Tanner was in therapy from around 2 with not much change until
we
> > > started him on fish oils right before 3. Along with fish oils
he
> was
> > > in almost daily speech therapy (none on Sunday) from around 3
to
> 6 -
> > > then he went to around 4 days a week from 6 to 7 -then from 7
to
> 10
> > > he was down to 2 days a week...and now at 11 he only sees Dr.
> Renai
> > > Jonas -a speech therapist in Boca that we love once in awhile.
> > >
> > > Tanner takes daily
> > > 4 ProEFA
> > > 2 ProEPA
> > > 4 Alpha Gamma Vitamin E
> > >
> > > Tanner drinks milk -has never been on a special diet -and back
> when
> > > we used to meet in person he was pretty typical of most of the
> other
> > > kids like him. Most of you know what worked for Tanner if you
> read
> > > The Late Talker book since he inspired it. Please let me know
> what
> > > you think of Tanner's speech here and I'll get him to answer any
> > > questions himself. He's learning how to type without looking
at
> the
> > > computer now at school - so it's good practice for him and he's
> got
> > > lots to share.
> > >
> > > Well without further ado -here's the update of Tanner!
> > > http://www.debtsmar
> > >
> > > =====
> > > Lisa Geng
> > > President CHERAB Foundation
> > > Communication Help, Education, Research, Apraxia Base
> > > http://www.cherab.
> > > Co Founder Speechville
> > > The Pink Mission
> > > http://www.thepinkm
> > > 772-335-5135
> > > "Help give our cherubs a smile and a voice"
> > >
> >
>
New book on late talking! http://www.speechville.com/late.talker.html
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