Re: question in refernce to G.'s post #41298(fish oils)

[Guest guest]

Cheryl, how old is your child?

Ernan

Quoting capetalker <capetalker@...>:

> I'm trying to catch up with everyone here as i said, and came across

> indicating that it is generally not recommened to add more fish

> oils until a plateau is noticed. How long do you wait for the plateau

> (or real slow progress) to go on before you bump up the dosages? Shea

> was really doing bad around Christmas--I mean sluggish, speech really

> difficult to understand, actually a regression in maturity,

> (incidentally, that's when we started Vitamin E Recommened by Dr.

> Agin--we had no idea what was happening here with many of you trying

> it on your children and started blindly with no bias). The last time

> we bumped up her EFA's was last May 2006 from 2 NN Efa's,and 1EPA to

> the same combo but 2 times a day. Dr. Agin said " let's see if we can

> give her a real boost " and boy did it ever!!She went from putting 2

> to very infrequently 4 words together to stringing 6 or 7 words. Then

> she was actually making little sentnces. of 4 words. There were times

> things really leveled off, some set backs,(I'm only talking about

> speech because we've never had a surge or great improvement with her

> low muscle tone,gross or fine motor skills). A

> After the set back in December, she came back HMMmm..mid January

> with speech a bit better(more animated, actaully using speech to show

> humor ,like PEE-U when she's in the bathroom or taking her shoes off)

> and trying to speak in little sentences more frequently.Maybe this

> was from the vit.E. Is that a surge? I was considering after a full

> month of her taking 2 Vit.E(which I didn't think made a difference

> but maybe it did now that I'm thinking of timing)of adding 3 more

> fish pills to be up to 2Efa's to 1Epa 3 times a day. I would just

> love to see her jump into a whole new level of speech as we've seen

> with the past increases in fish oils.

> WHAT is conidered a plateau?---- NO progress?,Painfully slow

> progress (which I've learned to not think abou too much).I don't want

> to use up all of our resources too early. Thank You-Cheryl

>

>

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

www.correo.unam.mx

UNAMonos Comunicándonos

[Guest guest]

-

-- In , vizcaino@... wrote:

> Shea is 3years 8 months old. Cheryl

> Cheryl, how old is your child?

> Ernan

>

> Quoting capetalker <capetalker@...>:

>

> > I'm trying to catch up with everyone here as i said, and came

across

> > indicating that it is generally not recommened to add more

fish

> > oils until a plateau is noticed. How long do you wait for the

plateau

> > (or real slow progress) to go on before you bump up the dosages?

Shea

> > was really doing bad around Christmas--I mean sluggish, speech

really

> > difficult to understand, actually a regression in maturity,

> > (incidentally, that's when we started Vitamin E Recommened by Dr.

> > Agin--we had no idea what was happening here with many of you

trying

> > it on your children and started blindly with no bias). The last

time

> > we bumped up her EFA's was last May 2006 from 2 NN Efa's,and 1EPA

to

> > the same combo but 2 times a day. Dr. Agin said " let's see if we

can

> > give her a real boost " and boy did it ever!!She went from putting

2

> > to very infrequently 4 words together to stringing 6 or 7 words.

Then

> > she was actually making little sentnces. of 4 words. There were

times

> > things really leveled off, some set backs,(I'm only talking about

> > speech because we've never had a surge or great improvement with

her

> > low muscle tone,gross or fine motor skills). A

> > After the set back in December, she came back HMMmm..mid

January

> > with speech a bit better(more animated, actaully using speech to

show

> > humor ,like PEE-U when she's in the bathroom or taking her shoes

off)

> > and trying to speak in little sentences more frequently.Maybe

this

> > was from the vit.E. Is that a surge? I was considering after a

full

> > month of her taking 2 Vit.E(which I didn't think made a

difference

> > but maybe it did now that I'm thinking of timing)of adding 3 more

> > fish pills to be up to 2Efa's to 1Epa 3 times a day. I would just

> > love to see her jump into a whole new level of speech as we've

seen

> > with the past increases in fish oils.

> > WHAT is conidered a plateau?---- NO progress?,Painfully slow

> > progress (which I've learned to not think abou too much).I don't

want

> > to use up all of our resources too early. Thank You-Cheryl

> >

> >

>

>

> -------------------------------------------------

> www.correo.unam.mx

> UNAMonos Comunicándonos

>

[Guest guest]

-She is 3 years 8 months old--hope you can help .cheryl

-- In , " capetalker "

<capetalker@...> wrote:

>

> I'm trying to catch up with everyone here as i said, and came

across

> indicating that it is generally not recommened to add more

fish

> oils until a plateau is noticed. How long do you wait for the

plateau

> (or real slow progress) to go on before you bump up the dosages?

Shea

> was really doing bad around Christmas--I mean sluggish, speech

really

> difficult to understand, actually a regression in maturity,

> (incidentally, that's when we started Vitamin E Recommened by Dr.

> Agin--we had no idea what was happening here with many of you

trying

> it on your children and started blindly with no bias). The last

time

> we bumped up her EFA's was last May 2006 from 2 NN Efa's,and 1EPA

to

> the same combo but 2 times a day. Dr. Agin said " let's see if we

can

> give her a real boost " and boy did it ever!!She went from putting 2

> to very infrequently 4 words together to stringing 6 or 7 words.

Then

> she was actually making little sentnces. of 4 words. There were

times

> things really leveled off, some set backs,(I'm only talking about

> speech because we've never had a surge or great improvement with

her

> low muscle tone,gross or fine motor skills). A

> After the set back in December, she came back HMMmm..mid January

> with speech a bit better(more animated, actaully using speech to

show

> humor ,like PEE-U when she's in the bathroom or taking her shoes

off)

> and trying to speak in little sentences more frequently.Maybe this

> was from the vit.E. Is that a surge? I was considering after a full

> month of her taking 2 Vit.E(which I didn't think made a difference

> but maybe it did now that I'm thinking of timing)of adding 3 more

> fish pills to be up to 2Efa's to 1Epa 3 times a day. I would just

> love to see her jump into a whole new level of speech as we've seen

> with the past increases in fish oils.

> WHAT is conidered a plateau?---- NO progress?,Painfully slow

> progress (which I've learned to not think abou too much).I don't

want

> to use up all of our resources too early. Thank You-Cheryl

>

[Guest guest]

-suzanne, Thankyou for responding. We are giving her 2 Vit.E (which

is 800I.U. of alpha and 400 mg of gamma total)that have mixed

tocopherols(alpha ,gamma,delta, and beta) because I couldn't find

anything locally that just had alpha and gamma. This high level makes

me very scared but like you said , some others feel,I want to try it

all and do it all--We are so deperate. AS I said in another post we

didn't see a " surge " but as I think we have seen subtle changes--A

little more mature play Like sitting on the back of the couch cushion

and saying " rihy da hohee " (ride the horsey).Maybe a bit improvement

of tone(Yesterday,she actually wrapped her legs around my back and

held on reasonably tight for a piggy back ride. SO, WE just don't

know what we can add or where to try going from here. any more

input? Thank You, Cheryl

)

(

-- In , " capetalker "

<capetalker@...> wrote:

>

> I'm trying to catch up with everyone here as i said, and came

across

> indicating that it is generally not recommened to add more

fish

> oils until a plateau is noticed. How long do you wait for the

plateau

> (or real slow progress) to go on before you bump up the dosages?

Shea

> was really doing bad around Christmas--I mean sluggish, speech

really

> difficult to understand, actually a regression in maturity,

> (incidentally, that's when we started Vitamin E Recommened by Dr.

> Agin--we had no idea what was happening here with many of you

trying

> it on your children and started blindly with no bias). The last

time

> we bumped up her EFA's was last May 2006 from 2 NN Efa's,and 1EPA

to

> the same combo but 2 times a day. Dr. Agin said " let's see if we

can

> give her a real boost " and boy did it ever!!She went from putting 2

> to very infrequently 4 words together to stringing 6 or 7 words.

Then

> she was actually making little sentnces. of 4 words. There were

times

> things really leveled off, some set backs,(I'm only talking about

> speech because we've never had a surge or great improvement with

her

> low muscle tone,gross or fine motor skills). A

> After the set back in December, she came back HMMmm..mid January

> with speech a bit better(more animated, actaully using speech to

show

> humor ,like PEE-U when she's in the bathroom or taking her shoes

off)

> and trying to speak in little sentences more frequently.Maybe this

> was from the vit.E. Is that a surge? I was considering after a full

> month of her taking 2 Vit.E(which I didn't think made a difference

> but maybe it did now that I'm thinking of timing)of adding 3 more

> fish pills to be up to 2Efa's to 1Epa 3 times a day. I would just

> love to see her jump into a whole new level of speech as we've seen

> with the past increases in fish oils.

> WHAT is conidered a plateau?---- NO progress?,Painfully slow

> progress (which I've learned to not think abou too much).I don't

want

> to use up all of our resources too early. Thank You-Cheryl

>

[Guest guest]

> >

> > I'm trying to catch up with everyone here as i said, and came

> across

> > indicating that it is generally not recommened to add more

> fish

> > oils until a plateau is noticed. How long do you wait for the

> plateau

> > (or real slow progress) to go on before you bump up the dosages?

> Shea

> > was really doing bad around Christmas--I mean sluggish, speech

> really

> > difficult to understand, actually a regression in maturity,

> > (incidentally, that's when we started Vitamin E Recommened by Dr.

> > Agin--we had no idea what was happening here with many of you

> trying

> > it on your children and started blindly with no bias). The last

> time

> > we bumped up her EFA's was last May 2006 from 2 NN Efa's,and 1EPA

> to

> > the same combo but 2 times a day. Dr. Agin said " let's see if we

> can

> > give her a real boost " and boy did it ever!!She went from putting

2

> > to very infrequently 4 words together to stringing 6 or 7 words.

> Then

> > she was actually making little sentnces. of 4 words. There were

> times

> > things really leveled off, some set backs,(I'm only talking about

> > speech because we've never had a surge or great improvement with

> her

> > low muscle tone,gross or fine motor skills). A

> > After the set back in December, she came back HMMmm..mid

January

> > with speech a bit better(more animated, actaully using speech to

> show

> > humor ,like PEE-U when she's in the bathroom or taking her shoes

> off)

> > and trying to speak in little sentences more frequently.Maybe

this

> > was from the vit.E. Is that a surge? I was considering after a

full

> > month of her taking 2 Vit.E(which I didn't think made a

difference

> > but maybe it did now that I'm thinking of timing)of adding 3 more

> > fish pills to be up to 2Efa's to 1Epa 3 times a day. I would just

> > love to see her jump into a whole new level of speech as we've

seen

> > with the past increases in fish oils.

> > WHAT is conidered a plateau?---- NO progress?,Painfully slow

> > progress (which I've learned to not think abou too much).I don't

> want

> > to use up all of our resources too early. Thank You-Cheryl

> >

>

[Guest guest]

Cheryl,

It seems to me that wrote that improvements on Vit E for ph came at

the higher doses, 800 IU alpha, and above. I hope you will search for her posts

and see exactly what she said about that. Remember, she said that up to 1500 IU

alpha per day is totally safe, and that Dr. Stordy, Ph.D. (nutritionalist) says

that 3000 IU alpha per day are completely safe. , in her untiring quest

for ph's improvement, has said that she gives more Vitamin E than the 1500

IU per day, and she would not tell exactly how much. But she found this

necessary in ph's case, and her posts say that he is a " totally normaly

little guy " , at 3 1/2, I believe, and being treated with high dose Vitamin

E/Omega 3--, " once severely apraxic...completely unintelligible and totally

uncoordinated just 1 year ago. " She said she is so frustrated at " all this

misinformation circulated...scaring parents away from totally benign

interventions that could significantly help their children. "

This weekend I saw an article in the paper from a study by the National Cancer

Society (forgive me if I got that name not quite right), and they said that

contrary to published reports, they have determined that Vitamin E is safe,

indeed lifesaving.

I think it is a really big deal that your daughter wrapped her legs around your

back and held on reasonably well, just based on our own experiences with out

little guy and holding on, and the 'ride the horsey'--these are huge joys.

I know the desperate feeling. It tears you apart. All I can say is that we,

too, have never seen any real surges. We have had good, steady progress both on

the fish oils and on the Vit E, so we have continued to increase the dosages of

both and continue to see good, steady progress. I have to say that we are

thrilled with the results. Our little guy has come so far since being diagnosed

this past June. I truly believe this would not have happened without these

supplements.

Surely someone else will reply to you on this. I know some people are using

Carnaware, and a lot feel that it has helped a lot. We never tried it so I have

no personal experience with this.

My heart goes out to you. You have to be comfortable with what you decide to

do. For us, we just would decide to up the dose and then I would basically hold

my breath..........But he always kept progressing more and more. So we have

continued.

All the very best luck in the world to you.

Suzanne

[ ] Re: question in refernce to G.'s post

#41298(fish oils)

-suzanne, Thankyou for responding. We are giving her 2 Vit.E (which

is 800I.U. of alpha and 400 mg of gamma total)that have mixed

tocopherols( alpha ,gamma,delta, and beta) because I couldn't find

anything locally that just had alpha and gamma. This high level makes

me very scared but like you said , some others feel,I want to try it

all and do it all--We are so deperate. AS I said in another post we

didn't see a " surge " but as I think we have seen subtle changes--A

little more mature play Like sitting on the back of the couch cushion

and saying " rihy da hohee " (ride the horsey).Maybe a bit improvement

of tone(Yesterday, she actually wrapped her legs around my back and

held on reasonably tight for a piggy back ride. SO, WE just don't

know what we can add or where to try going from here. any more

input? Thank You, Cheryl

)

(

-- In @groups. com, " capetalker "

<capetalker@ ...> wrote:

>

> I'm trying to catch up with everyone here as i said, and came

across

> indicating that it is generally not recommened to add more

fish

> oils until a plateau is noticed. How long do you wait for the

plateau

> (or real slow progress) to go on before you bump up the dosages?

Shea

> was really doing bad around Christmas--I mean sluggish, speech

really

> difficult to understand, actually a regression in maturity,

> (incidentally, that's when we started Vitamin E Recommened by Dr.

> Agin--we had no idea what was happening here with many of you

trying

> it on your children and started blindly with no bias). The last

time

> we bumped up her EFA's was last May 2006 from 2 NN Efa's,and 1EPA

to

> the same combo but 2 times a day. Dr. Agin said " let's see if we

can

> give her a real boost " and boy did it ever!!She went from putting 2

> to very infrequently 4 words together to stringing 6 or 7 words.

Then

> she was actually making little sentnces. of 4 words. There were

times

> things really leveled off, some set backs,(I'm only talking about

> speech because we've never had a surge or great improvement with

her

> low muscle tone,gross or fine motor skills). A

> After the set back in December, she came back HMMmm..mid January

> with speech a bit better(more animated, actaully using speech to

show

> humor ,like PEE-U when she's in the bathroom or taking her shoes

off)

> and trying to speak in little sentences more frequently.Maybe this

> was from the vit.E. Is that a surge? I was considering after a full

> month of her taking 2 Vit.E(which I didn't think made a difference

> but maybe it did now that I'm thinking of timing)of adding 3 more

> fish pills to be up to 2Efa's to 1Epa 3 times a day. I would just

> love to see her jump into a whole new level of speech as we've seen

> with the past increases in fish oils.

> WHAT is conidered a plateau?---- NO progress?,Painfully slow

> progress (which I've learned to not think abou too much).I don't

want

> to use up all of our resources too early. Thank You-Cheryl

>

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