Re: Vit. E levels being normal

[Guest guest]

Posting this for --In regards to blood levels being normal for

vitamin E.

Bottom line: Plamsa vit E levels will not guide you in therapy for

apraxia. It is helpful to know where you are starting…as some kids

truly have low vit E levels to start…however many have started out

pre-supplement with higher than the stated " norms " . Norms listed for

Vit E are also rather random, but that is another story. But

is " normal " for a non-apraxic child with no health issues, may not be

normal for a child with apraxia.

Vit E levels in the plasma do not necessarily reflect vitamin E

bioavailability in the organs it needs to get into. That is where

everyone is getting stuck. They see normal vit E and think… " no

problem " with vit E. This is an oversimplified way to think of

things – because the biochemistry involved is very complex. Its not

simply the amount of vit E in the blood (although those are the

conditions yet characterized). The issues around vit E in apraxia

have not yet been characterized. However if levels are low in blood

to start…likely low in tissue. Ultimately the neuro symptoms of vit

E deficiency are the result of poor vit E bioavailability in the

organs that need vit E to function properly (brain, peripheral

nervous system. Muscle included). There are several ways to have low

vit E bioavailability. One way is obvious…a vit E deficiency (ie low

blood levels of vit E), like that seen in malabsorption syndromes.

But the vit E needs to get from the blood into the organs (whether

its red blood cell, white blood cell or brain tissue, liver, muscle

etc). There are tocopherol transport proteins (TTP) involved in

this. (genetic defects affecting the alpha-tocopherol transfer

protein – as you mention). The TTP for liver have been identified.

Brain tocopherol transport proteins have not yet been identified in a

lab, however we know they have to exist . So there could be a

transport issue in muscle or brain. There is currently no test for

this, since the transport protein has not yet been identified. Also

increased consumption of antioxidants (as a result of oxidative

stress/inflammation) could affect vit E bioavailability. Even if the

Vit E is normal level in plasma, and transporting normally into the

organ of question…but there is significant oxidative stress within

those tissues and cells, it will be rapidly consumed, and ultimately

you have an increased requirement for vit E, and ultimately may

manifest with the symptoms of a vit E deficiency. In the case where

fatty acids (omegas) are rapidly oxidized or turned over in the cell

membrane, the body will rapidly utilize vit E to detoxify the rancid

omegas, and help recycle glutathione etc (one of the body's most

powerful antioxidants). It is very complicated. There are also many

paths that could lead to a low vit E bioavailability…including

abnormal cholesterol metabolism – since lipid metabolism is involved

in vit E metabolism. And finally there are many enzymes involved in

normal vit E and lipid metabolism, and alterations in their

structure/function…either genetically, or secondary to oxidative

damage, could affect their function. I am thinking there is some key

enzyme involved that either gets turned on or off depending on the

oxidative stress level of the environment its working in – given the

rapid regressions and improvements that some of these kids have on

and off supplements. It seems like a switch…either my son is an

apraxic mess – or he is not, depending on whether he is getting his

supplements and asthma meds (anti-inflammatories). A simple cold

triggers enough inflammation to increase apraxic symptoms…which will

resolve as the virus resolves. So does ingestion of a food he is

allergic to. These are uncharted waters. Sadly it will remain that

way until the medical community finds it interesting enough to

study. But once it is confirmed this is a metabolic disorder of some

sort, I guarantee it will peak the interest of scientists. It is a

fascinating puzzle from the biochemical standpoint…less fascinating

to me given it is affecting my children – but truly intriguing how it

all fits together. The exciting aspect of all this is that

inflammation is treatable, and that is likely what we are controlling

with omega 3 and vit E. Still need to get to the ultimate cause of

increased inflammation/oxidative stress and GI permeability. One step

at a time. As a scientist…I really want to know why this is working

and uncover the mechanism. As a parent…couldn't care less why its

working. Just thrilled that it is. -

[Guest guest]

Thank you!

>

> Posting this for --In regards to blood levels being normal

for

> vitamin E.

>

> Bottom line: Plamsa vit E levels will not guide you in therapy for

> apraxia. It is helpful to know where you are starting…as some kids

> truly have low vit E levels to start…however many have started out

> pre-supplement with higher than the stated " norms " . Norms listed

for

> Vit E are also rather random, but that is another story. But

> is " normal " for a non-apraxic child with no health issues, may not

be

> normal for a child with apraxia.

>

> Vit E levels in the plasma do not necessarily reflect vitamin E

> bioavailability in the organs it needs to get into. That is where

> everyone is getting stuck. They see normal vit E and think… " no

> problem " with vit E. This is an oversimplified way to think of

> things – because the biochemistry involved is very complex. Its not

> simply the amount of vit E in the blood (although those are the

> conditions yet characterized). The issues around vit E in apraxia

> have not yet been characterized. However if levels are low in

blood

> to start…likely low in tissue. Ultimately the neuro symptoms of

vit

> E deficiency are the result of poor vit E bioavailability in the

> organs that need vit E to function properly (brain, peripheral

> nervous system. Muscle included). There are several ways to have

low

> vit E bioavailability. One way is obvious…a vit E deficiency (ie

low

> blood levels of vit E), like that seen in malabsorption syndromes.

> But the vit E needs to get from the blood into the organs (whether

> its red blood cell, white blood cell or brain tissue, liver, muscle

> etc). There are tocopherol transport proteins (TTP) involved in

> this. (genetic defects affecting the alpha-tocopherol transfer

> protein – as you mention). The TTP for liver have been identified.

> Brain tocopherol transport proteins have not yet been identified in

a

> lab, however we know they have to exist . So there could be a

> transport issue in muscle or brain. There is currently no test for

> this, since the transport protein has not yet been identified.

Also

> increased consumption of antioxidants (as a result of oxidative

> stress/inflammation) could affect vit E bioavailability. Even if

the

> Vit E is normal level in plasma, and transporting normally into the

> organ of question…but there is significant oxidative stress within

> those tissues and cells, it will be rapidly consumed, and

ultimately

> you have an increased requirement for vit E, and ultimately may

> manifest with the symptoms of a vit E deficiency. In the case where

> fatty acids (omegas) are rapidly oxidized or turned over in the

cell

> membrane, the body will rapidly utilize vit E to detoxify the

rancid

> omegas, and help recycle glutathione etc (one of the body's most

> powerful antioxidants). It is very complicated. There are also

many

> paths that could lead to a low vit E bioavailability…including

> abnormal cholesterol metabolism – since lipid metabolism is

involved

> in vit E metabolism. And finally there are many enzymes involved in

> normal vit E and lipid metabolism, and alterations in their

> structure/function…either genetically, or secondary to oxidative

> damage, could affect their function. I am thinking there is some

key

> enzyme involved that either gets turned on or off depending on the

> oxidative stress level of the environment its working in – given

the

> rapid regressions and improvements that some of these kids have on

> and off supplements. It seems like a switch…either my son is an

> apraxic mess – or he is not, depending on whether he is getting his

> supplements and asthma meds (anti-inflammatories). A simple cold

> triggers enough inflammation to increase apraxic symptoms…which

will

> resolve as the virus resolves. So does ingestion of a food he is

> allergic to. These are uncharted waters. Sadly it will remain that

> way until the medical community finds it interesting enough to

> study. But once it is confirmed this is a metabolic disorder of

some

> sort, I guarantee it will peak the interest of scientists. It is a

> fascinating puzzle from the biochemical standpoint…less fascinating

> to me given it is affecting my children – but truly intriguing how

it

> all fits together. The exciting aspect of all this is that

> inflammation is treatable, and that is likely what we are

controlling

> with omega 3 and vit E. Still need to get to the ultimate cause of

> increased inflammation/oxidative stress and GI permeability. One

step

> at a time. As a scientist…I really want to know why this is working

> and uncover the mechanism. As a parent…couldn't care less why its

> working. Just thrilled that it is. -

>