Re: Vitamin E Question?? Please help me

[Guest guest]

My six year old verbal apraxic child seems to really stim when he is on EFA

and EPA. Even the smallest amount of just a couple of drops seem to make him

very stimmy. He develops a need to see a string move and he just seems more

in his own world. Does anyone think it may be helpful to also try the vitamin

E with him, or should I just remove the oils?

Should I try vitamin E alone or ad it with the EPA and EFA? He was doing

quite well until I added the nordic naturals which I have tried with him on and

off over the last year. I get the same stimmy reaction each time, but he

drinks it like he craves it. His drink is very fishy smelling, but he likes it.

What do I do???

I want to give him what he needs and the doctor wanted him to be on both,

but this stimmy thing is getting in the way and it makes his ears very

sensitive to everything. He clenches on his ears around any sound or

anticipation of

a sound.

Vitamin E sounds interesting to me, but I do worry about behavior as well.

Please give me some advise!

Jule

[Guest guest]

My six year old verbal apraxic child seems to really stim when he is on EFA

and EPA. Even the smallest amount of just a couple of drops seem to make him

very stimmy. He develops a need to see a string move and he just seems more

in his own world. Does anyone think it may be helpful to also try the vitamin

E with him, or should I just remove the oils?

Should I try vitamin E alone or ad it with the EPA and EFA? He was doing

quite well until I added the nordic naturals which I have tried with him on and

off over the last year. I get the same stimmy reaction each time, but he

drinks it like he craves it. His drink is very fishy smelling, but he likes it.

What do I do???

I want to give him what he needs and the doctor wanted him to be on both,

but this stimmy thing is getting in the way and it makes his ears very

sensitive to everything. He clenches on his ears around any sound or

anticipation of

a sound.

Vitamin E sounds interesting to me, but I do worry about behavior as well.

Please give me some advise!

Jule

[Guest guest]

I just posted that my daughter used to show side effects when I

increased or reintroduced the EFA's (they were sensory and emotional

in nature). We also discovered later that she is deficient in Vitamin

E. It is possible that we were worsening her symptoms with EFA's

because it is possible it increased her demand for the Vit E (further

depleting supplies). We stopped the EFA's, gave her Vit E at 400IU

for a couple of weeks, then reintroduced the EFA's. In our case she

is now able to tolerate the EFA's without any side effects. Perhaps

this is also your son's case, or there may be another issue going on.

It might be worth a try... I hope or some one else can give

you additional input.

[Guest guest]

I suggest you try an unflavored brand of fish oil, like omega-brite.

That is the only brand I've found that works for my kids.

>

> My six year old verbal apraxic child seems to really stim when he

is on EFA

> and EPA. Even the smallest amount of just a couple of drops seem to

make him

> very stimmy. He develops a need to see a string move and he just

seems more

> in his own world. Does anyone think it may be helpful to also try

the vitamin

> E with him, or should I just remove the oils?

> Should I try vitamin E alone or ad it with the EPA and EFA? He was

doing

> quite well until I added the nordic naturals which I have tried with

him on and

> off over the last year. I get the same stimmy reaction each time,

but he

> drinks it like he craves it. His drink is very fishy smelling, but

he likes it.

> What do I do???

> I want to give him what he needs and the doctor wanted him to be on

both,

> but this stimmy thing is getting in the way and it makes his ears very

> sensitive to everything. He clenches on his ears around any sound or

anticipation of

> a sound.

> Vitamin E sounds interesting to me, but I do worry about behavior

as well.

> Please give me some advise!

> Jule

>

>

>

[Guest guest]

> >

> > My six year old verbal apraxic child seems to really stim when

he

> is on EFA

> > and EPA. Even the smallest amount of just a couple of drops seem

to

> make him

> > very stimmy. He develops a need to see a string move and he just

> seems more

> > in his own world. Does anyone think it may be helpful to also try

> the vitamin

> > E with him, or should I just remove the oils?

> > Should I try vitamin E alone or ad it with the EPA and EFA? He

was

> doing

> > quite well until I added the nordic naturals which I have tried

with

> him on and

> > off over the last year. I get the same stimmy reaction each time,

> but he

> > drinks it like he craves it. His drink is very fishy smelling,

but

> he likes it.

> > What do I do???

> > I want to give him what he needs and the doctor wanted him to

be on

> both,

> > but this stimmy thing is getting in the way and it makes his

ears very

> > sensitive to everything. He clenches on his ears around any

sound or

> anticipation of

> > a sound.

> > Vitamin E sounds interesting to me, but I do worry about

behavior

> as well.

> > Please give me some advise!

> > Jule

> >

> >

> >

[Guest guest]

Funny, I just wrote something similar. Now that we are seeing

several

families with this experience...I am really thinking vitamin E

issues

are directly contributing to sensory issues. I am a supporter

of " evidence based medicine " . Even though all of this is anecdotal,

we are really collecting quite a bit of new information. Keep it

up!! I just bought some phosphocholine (soy lecithin)...since I've

read enough to suggest it " might " help, and its completely safe.

ph has leveled off on all his vitamin E surges...and is doing

just

awesome, but it would be nice to take him to the next level with

intelligibility. Most people would not realize he talks any

different

than a normal 3 year old...but just last week someone asked where

his " accent " was from. My husband told them he was from Brooklyn.

Oh...didn't realize you guys were from new york. My husband just

smiled. Too much energy to try to explain.... -

I just posted that my daughter used to show side effects when I

increased or reintroduced the EFA's (they were sensory and emotional

in nature). We also discovered later that she is deficient in

Vitamin

E. It is possible that we were worsening her symptoms with EFA's

because it is possible it increased her demand for the Vit E

(further

depleting supplies). We stopped the EFA's, gave her Vit E at 400IU

for a couple of weeks, then reintroduced the EFA's. In our case she

is now able to tolerate the EFA's without any side effects. Perhaps

this is also your son's case, or there may be another issue going

on.

It might be worth a try... I hope or some one else can give

you additional input.

--- End forwarded message ---

[Guest guest]

I just posted that my daughter used to show side effects when I

increased or reintroduced the EFA's (they were sensory and emotional

in nature). We also discovered later that she is deficient in Vitamin

E. It is possible that we were worsening her symptoms with EFA's

because it is possible it increased her demand for the Vit E (further

depleting supplies). We stopped the EFA's, gave her Vit E at 400IU

for a couple of weeks, then reintroduced the EFA's. In our case she

is now able to tolerate the EFA's without any side effects. Perhaps

this is also your son's case, or there may be another issue going on.

It might be worth a try... I hope or some one else can give

you additional input.

[Guest guest]

I suggest you try an unflavored brand of fish oil, like omega-brite.

That is the only brand I've found that works for my kids.

>

> My six year old verbal apraxic child seems to really stim when he

is on EFA

> and EPA. Even the smallest amount of just a couple of drops seem to

make him

> very stimmy. He develops a need to see a string move and he just

seems more

> in his own world. Does anyone think it may be helpful to also try

the vitamin

> E with him, or should I just remove the oils?

> Should I try vitamin E alone or ad it with the EPA and EFA? He was

doing

> quite well until I added the nordic naturals which I have tried with

him on and

> off over the last year. I get the same stimmy reaction each time,

but he

> drinks it like he craves it. His drink is very fishy smelling, but

he likes it.

> What do I do???

> I want to give him what he needs and the doctor wanted him to be on

both,

> but this stimmy thing is getting in the way and it makes his ears very

> sensitive to everything. He clenches on his ears around any sound or

anticipation of

> a sound.

> Vitamin E sounds interesting to me, but I do worry about behavior

as well.

> Please give me some advise!

> Jule

>

>

>

[Guest guest]

> >

> > My six year old verbal apraxic child seems to really stim when

he

> is on EFA

> > and EPA. Even the smallest amount of just a couple of drops seem

to

> make him

> > very stimmy. He develops a need to see a string move and he just

> seems more

> > in his own world. Does anyone think it may be helpful to also try

> the vitamin

> > E with him, or should I just remove the oils?

> > Should I try vitamin E alone or ad it with the EPA and EFA? He

was

> doing

> > quite well until I added the nordic naturals which I have tried

with

> him on and

> > off over the last year. I get the same stimmy reaction each time,

> but he

> > drinks it like he craves it. His drink is very fishy smelling,

but

> he likes it.

> > What do I do???

> > I want to give him what he needs and the doctor wanted him to

be on

> both,

> > but this stimmy thing is getting in the way and it makes his

ears very

> > sensitive to everything. He clenches on his ears around any

sound or

> anticipation of

> > a sound.

> > Vitamin E sounds interesting to me, but I do worry about

behavior

> as well.

> > Please give me some advise!

> > Jule

> >

> >

> >

[Guest guest]

Funny, I just wrote something similar. Now that we are seeing

several

families with this experience...I am really thinking vitamin E

issues

are directly contributing to sensory issues. I am a supporter

of " evidence based medicine " . Even though all of this is anecdotal,

we are really collecting quite a bit of new information. Keep it

up!! I just bought some phosphocholine (soy lecithin)...since I've

read enough to suggest it " might " help, and its completely safe.

ph has leveled off on all his vitamin E surges...and is doing

just

awesome, but it would be nice to take him to the next level with

intelligibility. Most people would not realize he talks any

different

than a normal 3 year old...but just last week someone asked where

his " accent " was from. My husband told them he was from Brooklyn.

Oh...didn't realize you guys were from new york. My husband just

smiled. Too much energy to try to explain.... -

I just posted that my daughter used to show side effects when I

increased or reintroduced the EFA's (they were sensory and emotional

in nature). We also discovered later that she is deficient in

Vitamin

E. It is possible that we were worsening her symptoms with EFA's

because it is possible it increased her demand for the Vit E

(further

depleting supplies). We stopped the EFA's, gave her Vit E at 400IU

for a couple of weeks, then reintroduced the EFA's. In our case she

is now able to tolerate the EFA's without any side effects. Perhaps

this is also your son's case, or there may be another issue going

on.

It might be worth a try... I hope or some one else can give

you additional input.

--- End forwarded message ---

[Guest guest]

I know, this is all very interesting and hopeful. I am glad you

were able to figure out that, at least in cases like ours, the

Vitamin E deficiency was causing sensory/emotional issues. I can't

wait to hear what your son's results are in terms of malabsorption.

We did an IGg but not a Celiac Panel, nor have we checked for

Carnitine. We live out of the country now and don't have access to a

lot of advanced testing, I have to research what is available here.

A few supplement questions: what are the possible benefits of

phosphocholine, and how do you hope this may help with

articulation? Also, if my daughter shows low zinc concentrations,

do you think it is risky to supplement with carnaware? Finally,

what info do you or anyone in the group have on GSH and the Methyl

B12 shots?

Thanks!

[Guest guest]

Hi ,

I apologize for the earlier posting. I went back and tried the search

again, leaving out the hyphen in omega-brite and came up with the

product you are speaking of. I am so sorry for bothering you with this.

But still, I am hoping you will answer my question as to how your

children take this unflavored fish oil and how to swallow the capsule,

etc.

You have been so very, very helpful, time and again.

Thank you, Suzanne

[Guest guest]

I know, this is all very interesting and hopeful. I am glad you

were able to figure out that, at least in cases like ours, the

Vitamin E deficiency was causing sensory/emotional issues. I can't

wait to hear what your son's results are in terms of malabsorption.

We did an IGg but not a Celiac Panel, nor have we checked for

Carnitine. We live out of the country now and don't have access to a

lot of advanced testing, I have to research what is available here.

A few supplement questions: what are the possible benefits of

phosphocholine, and how do you hope this may help with

articulation? Also, if my daughter shows low zinc concentrations,

do you think it is risky to supplement with carnaware? Finally,

what info do you or anyone in the group have on GSH and the Methyl

B12 shots?

Thanks!

[Guest guest]

The phosphocholine is a new one for me. It really " shouldn't " do

anything...but I'm willing to give it a try if nutritionalists have

used it and seen improvement in kids on the spectrum. It is a

structural fat...so going back to the concept of fatty acid

metabolism problems and the fact that the cell membranes are made of

fat...and abnormal make-up of those membranes will cause messages

from the brain to the muscles to get scrambled...I'm going to give

it a try.

B12 is also now available in an oral formula...absorbs better than

the " old " formulas...so you may want to try this before giving

shots. B12 is important to normal neuro function. Some on this list

have described benefits of the shots...unfortunately there aren't

any well done studies. Shots are invasive in my book, so we never

went there...but if there are truly methylation issues etc, there is

a mechanism by which it would make sense that B12 might help some

kids.

Zinc supplements are fairly inexpensive and safe.

I have no experience with carnaware. Honestly I really am not a

supplement expert in any fashion. Last year I didn't even really

understand what apraxia meant (like most of my pediatric

colleagues). There is overwhelming evidence from thousands on this

site that omegas help a majority of kids with apraxia/dyspraxia.

There is accumulating evidence in the literature that omega 3

supplements are safe and healthy...and benefit a large number of

neurodevelopmental conditions. The vitamin E addition to the

formula is completely new...but making a huge difference for many

who have tried it. Given that it has nearly " cured " my guy...other

kids like him will likely respond in a similar fashion. It is

probably worth it for folks to try...even at the risk of

disappointment if it doesn't work...because it is a safe supplement,

and if it works...WOW!

-

> I know, this is all very interesting and hopeful. I am glad you

> were able to figure out that, at least in cases like ours, the

> Vitamin E deficiency was causing sensory/emotional issues. I

can't

> wait to hear what your son's results are in terms of

malabsorption.

> We did an IGg but not a Celiac Panel, nor have we checked for

> Carnitine. We live out of the country now and don't have access to

a

> lot of advanced testing, I have to research what is available

here.

>

> A few supplement questions: what are the possible benefits of

> phosphocholine, and how do you hope this may help with

> articulation? Also, if my daughter shows low zinc concentrations,

> do you think it is risky to supplement with carnaware? Finally,

> what info do you or anyone in the group have on GSH and the Methyl

> B12 shots?

>

> Thanks!

>

>

>

[Guest guest]

Hi ,

I apologize for the earlier posting. I went back and tried the search

again, leaving out the hyphen in omega-brite and came up with the

product you are speaking of. I am so sorry for bothering you with this.

But still, I am hoping you will answer my question as to how your

children take this unflavored fish oil and how to swallow the capsule,

etc.

You have been so very, very helpful, time and again.

Thank you, Suzanne

[Guest guest]

The phosphocholine is a new one for me. It really " shouldn't " do

anything...but I'm willing to give it a try if nutritionalists have

used it and seen improvement in kids on the spectrum. It is a

structural fat...so going back to the concept of fatty acid

metabolism problems and the fact that the cell membranes are made of

fat...and abnormal make-up of those membranes will cause messages

from the brain to the muscles to get scrambled...I'm going to give

it a try.

B12 is also now available in an oral formula...absorbs better than

the " old " formulas...so you may want to try this before giving

shots. B12 is important to normal neuro function. Some on this list

have described benefits of the shots...unfortunately there aren't

any well done studies. Shots are invasive in my book, so we never

went there...but if there are truly methylation issues etc, there is

a mechanism by which it would make sense that B12 might help some

kids.

Zinc supplements are fairly inexpensive and safe.

I have no experience with carnaware. Honestly I really am not a

supplement expert in any fashion. Last year I didn't even really

understand what apraxia meant (like most of my pediatric

colleagues). There is overwhelming evidence from thousands on this

site that omegas help a majority of kids with apraxia/dyspraxia.

There is accumulating evidence in the literature that omega 3

supplements are safe and healthy...and benefit a large number of

neurodevelopmental conditions. The vitamin E addition to the

formula is completely new...but making a huge difference for many

who have tried it. Given that it has nearly " cured " my guy...other

kids like him will likely respond in a similar fashion. It is

probably worth it for folks to try...even at the risk of

disappointment if it doesn't work...because it is a safe supplement,

and if it works...WOW!

-

> I know, this is all very interesting and hopeful. I am glad you

> were able to figure out that, at least in cases like ours, the

> Vitamin E deficiency was causing sensory/emotional issues. I

can't

> wait to hear what your son's results are in terms of

malabsorption.

> We did an IGg but not a Celiac Panel, nor have we checked for

> Carnitine. We live out of the country now and don't have access to

a

> lot of advanced testing, I have to research what is available

here.

>

> A few supplement questions: what are the possible benefits of

> phosphocholine, and how do you hope this may help with

> articulation? Also, if my daughter shows low zinc concentrations,

> do you think it is risky to supplement with carnaware? Finally,

> what info do you or anyone in the group have on GSH and the Methyl

> B12 shots?

>

> Thanks!

>

>

>