stopping pro-efa

[Guest guest]

Just wondering. When stopping Pro-efa how soon have people seen a change in

their

children? I took my son off just to see if it is really doing anything for him.

Also, has

anyone not had any change in speech with their apraxic chilcdren when giving

pro-efa.

Thanks

[Guest guest]

The regression started within the first week - subtle at first, but by the

second week it was absolutely heartbreaking. ph stopped babbling - was

back to grunting (though still signing well) and was falling down all over

the place after his coordination had gotten much better. It was the first

time my husband said " there's really something WRONG with him " . My

Halloween was a nightmare, because at 25 months, he wanted to run with the

other kids, but would fall down 2-3 times between each house - and wouldn't

let me carry him because he thinks he's a big boy. It was so sad. He fell

down stairs the next day when one of the kids left the gate open. We

started pro-EFA at that point, and within the following week we started to

see improvements again. (Thank God). Up until that point I thought it was

all coincidence - and thought this regression was an aweful

deterioration/progression of whatever neurologic condition my son had. The

only thing that kept me from losing it was knowing that described this

experience in Tanner - so I was hoping it was a reversible effect of omega

withdrawl. Really we just got back to the developmental spot we were with

him prior to starting omegas...but it seemed so much worse after watching

him make progress...to lose that progress so quickly. Now I'm a big fan of

the omegas - as everyone hear knows only too well.

-

[ ] stopping pro-efa

Just wondering. When stopping Pro-efa how soon have people seen a change in

their

children? I took my son off just to see if it is really doing anything for

him. Also, has

anyone not had any change in speech with their apraxic chilcdren when giving

pro-efa.

Thanks

[Guest guest]

I can tell you that my older son - apraxic - was on it for nearly 2

years and it clearly benefitted him. For the last 6 mos of being on

it, it affected his behaviour very negatively. When I finally

realized it was the ProEFA and took him off it, we had NO regression

and such a drastic improvement in his behaviour that he was able to be

much more productive in ST. He was discharged from ST 2 years ago at

5.5 after 3+ years of therapy.

Some people take their kids off it and then put them back on

intentionally to give them another surge.

And there are definitely people who do not benefit from using it. You

won't find so many on here - though there are a few - because this

board is so focused on using it they feel it's not the right site for

them. If you belong to other Speech Delays sites, ask there, too.

Hope this helps -

Marina

>

> Just wondering. When stopping Pro-efa how soon have people seen a

change in their

> children? I took my son off just to see if it is really doing

anything for him. Also, has

> anyone not had any change in speech with their apraxic chilcdren

when giving pro-efa.

> Thanks

>

[Guest guest]

hi

can i just ask how long he has been on it?

interesting to me is the fact that i did't notice a profound

difference in my autistic son for a week or two and then the changes

are subtle. when the frequency of something reduces or diminishes it

is much harder to notice - way easier to notice a new word or the

longest ever sentence than to gradually become aware that he isn't

initiating with me as often. for charlie the words don't drop away

but his willingness to try subsides and that absence, trust me, can

be harder to notice. with my eldest son thoug who is absoloutely nt i

notice pretty quickly - less organised, takes much longer to get a

story about school out, longer looking for the right word, homework

is scruffier, forgets piano lesson etc etc. Helpfully he notices too

even though it can be a couple of weeks before his fuzziness becomes

noticeable. for me it is a return to standing at a mid point on the

stairs trying to remember what i was heading up there for.

it will be interesting to see how your experiment goes but frankly i

am not sure why any one would stop taking then once they are aware of

their general health benefits - particularly for ALL children.

regards

Deborah -

[Guest guest]

Again Marina without opening the same cans of worms we just opened

last week -this group doesn't focus on one thing working or not

working -this group allows free speech. Including posts that try to

paint another picture. Forget the grouplists, especially since

there are many that do discriminate against messages that shows they

were small minded and wrong for attacking me so severely years ago

for talking about EFAs

If you want to see the real results for EFAs in the majority -join a

local support group near you. Or if you don't have any -ask any of

the parents or professionals who were members of the huge one we had

for years for both Children's Apraxia Network and then CHERAB out of

St Barnabas and Children's Specialized Hospital. (oh and don't

expect to find any information about CHERAB, Children's Apraxia

Network (the original and the nonprofit -not the PA one that Mauri

started as a support group and asked if she could use our name) or

even The Late Talker book which more people know about that read the

New York Times then 'some' supposed apraxia grouplist. This is

because unlike that online group - The New York Times wrote two

articles on The Late Talker and recommended it and only mentioned

that book alone as a resource for " late talkers "

Some other news not talked about

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

(so did it all really happen? Why not debate that too) )

Free speech -why not try it. Post something nice about CHERAB, The

Late Talker or Shop In Service, me and see if it gets posted

" elsewhere " . You'll find all of the above mentioned at Speechdiet

(the group started when we were kicked off of Apraxia Kids)

And...lots and lots of postive -mainly positive, about ProEFA.

Probably why not much is posted " elsewhere " -it has to be posted

without mentioning me or CHERAB or The Late Talker etc.

Oh -and I don't own or have anything to do with Speechdiet.

Don't believe me -again -join a local support group.

=====

[Guest guest]

We stopped it too, at different times for various reasons saw some

regressions, probably within days/week when first on them. But for

us long term use it caused things that were too much to deal with

versus the benefit, upping it was not the answer for us. We did not

loose anything when we stopped. We used them for almost 2 years also.

> I can tell you that my older son - apraxic - was on it for nearly 2

> years and it clearly benefitted him. For the last 6 mos of being

on

> it, it affected his behaviour very negatively. When I finally

> realized it was the ProEFA and took him off it, we had NO

regression

> and such a drastic improvement in his behaviour that he was able to

be

> much more productive in ST. He was discharged from ST 2 years ago

at

> 5.5 after 3+ years of therapy.

>

> Some people take their kids off it and then put them back on

> intentionally to give them another surge.

>

> And there are definitely people who do not benefit from using it.

You

> won't find so many on here - though there are a few - because this

> board is so focused on using it they feel it's not the right site

for

> them. If you belong to other Speech Delays sites, ask there, too.

>

> Hope this helps -

> Marina

[Guest guest]

I'm another parent here who is on this list but hasn't noticed a dramatic

improvement with Pro-EFA. Really this list isn't full of people who have

miracle reactions! Like with anything else if it works for you you're just

more likely to be very vocal about it.

Initially I noticed a lot more speech attempts within the first week, but

things leveled off quickly. Our son was ill a couple months ago and we

stopped the pro-efa, not due to lack of improvement, but when a kid is

throwing up a lot oil isn't the first thing I put in him! It was about

three or four weeks before I remembered to put that back into our routine

shortly after Christmas. I didn't notice a regression when we were off, in

fact he had a surge, but I think that is coincidence. For the last three

years he has had improvement over Christmas breaks. I believe during that

SHORT two week break from speech therapies he integrates what he has been

working on. He also seems to have a growth spurt in the late fall and his

body settles into it's new size in Dec and he figures everything out or

something. We have been back on the pro-efa for about 5 weeks and I didn't

notice any kind of a surge this time around. I also haven't noticed any

kind of side effects so I'm not going to stop it. I've thought about

dosing twice a day, but haven't made that choice yet. Our mornings have

been very chaotic recently (I'm nearing the end of my first trimester so

between exhaustion and vomiting I'm lucky to even get them out the door in

time to drive my husband to work let alone feed or medicate the

kids!) Perhaps when things settle down some we'll add a morning dose and

see what happens.

It's funny that this has come up on this list because his speech therapist

today was just asking if we were still taking the fish oils and what I

thought! She hadn't heard anything about the multiple dosing, but she

agreed it wouldn't hurt to keep trying.

On the other hand I've started giving it to my very active 6 yr old (who

was strictly a very late talker, but is now more than resolved.) We

homeschool him and his concentration isn't always the best. Many people

(unqualified to diagnose) suggest to us that he has ADHD, but he

doesn't. My personal belief is that ADHD is just the far end of a curve

which my older son is further along than typical on. He CAN concentrate

fabulously, better than his peers at Tiger Cubs, ballet and tap class. For

me he will concentrate well for science and history, but not so well for

reading, writing and math which he doesn't like to do. Since starting the

pro-efa after Christmas both he and I have noticed improved

concentration. The only problem is he hates the taste (my 4 yr old loves

it now!) We found that apple sauce masks the flavor the best for him so

he's getting a little bowl every evening laced with pro-efa. I too have

been taking it and I haven't noticed changes for me except for looser

bowels which is annoying and hasn't gone away after the first few

weeks. It's not extreme and the possible benefit for my growing baby is

worth any minimal discomfort.

Unlike what others have experienced, my son's speech therapists and

pediatrician have both thought that it's great that we decided to use fish

oils. These same people would not advise most of the other biomed

treatments, but they think fish oil is great! I just wish my son was

having the very dramatic results others have had.

Miche

[Guest guest]

Ok, - you need to lighten up! Have you been on vacation

lately?? All I meant is that there are folks - I correspond with at

least 5 - who do not come here anymore because the slant of the

board does not serve them. It IS what it is - and you should be

proud of what it is because it is clearly a reflection of you. You

cannot, free speech or not - be all things to all people - and your

beliefs come through loud and clear (a wilting lily, you are not),

though you do allow other people to post their beliefs, too. You

can WANT the board to be alot of things, but if proEFA doesn't work

for you and you just want to talk therapy theory or specific

practitioners or IEP goals, there are other places where that type

of thing is posted more frequently.

Be PROUD of what the board is, and understanding of what it's not.

And don't read things into every post. You know me: if I mean

something, I'll SAY IT!!

Have a great day - and take a deep breath!

Marina

I merely answered the person's question to the best of my

ability.

>

> Again Marina without opening the same cans of worms we just opened

> last week -this group doesn't focus on one thing working or not

> working -this group allows free speech. Including posts that try

to

> paint another picture. Forget the grouplists, especially since

> there are many that do discriminate against messages that shows

they

> were small minded and wrong for attacking me so severely years ago

> for talking about EFAs

>

> If you want to see the real results for EFAs in the majority -join

a

> local support group near you. Or if you don't have any -ask any

of

> the parents or professionals who were members of the huge one we

had

> for years for both Children's Apraxia Network and then CHERAB out

of

> St Barnabas and Children's Specialized Hospital. (oh and don't

> expect to find any information about CHERAB, Children's Apraxia

> Network (the original and the nonprofit -not the PA one that Mauri

> started as a support group and asked if she could use our name) or

> even The Late Talker book which more people know about that read

the

> New York Times then 'some' supposed apraxia grouplist. This is

> because unlike that online group - The New York Times wrote two

> articles on The Late Talker and recommended it and only mentioned

> that book alone as a resource for " late talkers "

>

> Some other news not talked about

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

> (so did it all really happen? Why not debate that too) )

>

> Free speech -why not try it. Post something nice about CHERAB,

The

> Late Talker or Shop In Service, me and see if it gets posted

> " elsewhere " . You'll find all of the above mentioned at Speechdiet

> (the group started when we were kicked off of Apraxia Kids)

> And...lots and lots of postive -mainly positive, about ProEFA.

>

> Probably why not much is posted " elsewhere " -it has to be posted

> without mentioning me or CHERAB or The Late Talker etc.

>

> Oh -and I don't own or have anything to do with Speechdiet.

>

> Don't believe me -again -join a local support group.

>

> =====

>

[Guest guest]

I had experimented with quiting ProEFA just recenetly. Regression was slow,

almost invisible. By the second week my son regressed more noticably in the

sense of his behavior. He was cranky, unwilling to do any ST or any new

activities. He didn't lose any of his speech, he was just doing it less and less

willing to use his words.

Starting him back on ProEFA after almost 3 weeks off was very visible. Within

1 week he was back to babbling and I even got a note from school that he

wouldn't shut up the whole day. In our household it is a compliment toward our

son because he is a quiet one He is now back to using his signs as well as

attempting to talk. He more lively and happy. He still hates taking 2 capsules

but I am able to slip his dose every time his tells me " no " while spoon with

supplement is at his lips )

Overall, things have been working out for my son just as mention in her

book. I followed her recommendations precisely. Our extend is not as " miracle "

but my kid didn't show any signs of interest in speech or ASL for the first 5

years of his life. He was smiley and happy, just never interested in talking. He

is 7 now and 2 developmentally.

mesinger207 <mesinger207@...> wrote:

Just wondering. When stopping Pro-efa how soon have people seen a change in

their

children? I took my son off just to see if it is really doing anything for him.

Also, has

anyone not had any change in speech with their apraxic chilcdren when giving

pro-efa.

Thanks

---------------------------------

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[Guest guest]

We ran out of EFAs last winter, so we stopped accidentally. My son

showed absolutely no signs of regression in langauge or behavior at

all. But he did have a seizure - and we had very good control of

his epilepsy at the time. We restarted the EPA/DHA mix that we use

and haven't had a seizure since.

> Just wondering. When stopping Pro-efa how soon have people seen

a change in their

> children? I took my son off just to see if it is really doing

anything for him. Also, has

> anyone not had any change in speech with their apraxic chilcdren

when giving pro-efa.

> Thanks