Jump to content
RemedySpot.com
Sign in to follow this  
Guest guest

Re: Important message you all want to read...and share

Rate this topic

Recommended Posts

Guest guest

Kris,

My label reads 30 IU of vit e, per serving. 2 capsules make 1

serving. (So 15 IU of vit.E in 1 capsule.)

For 9 capsules (6EFA,and 3EPA)is 135IU of Vitamine E.

I think is giving her son 400 IU in addition to the EFA'S and

EPA. She also mentioned 15 IU in his daily multi-vitamin too. So you

would have to add that in as well.

Dawn in NJ

> > >

> > > I am posting this for Dr. who is an amazing

member of

> > > this group, who has news to share of her own son's rapid

recovery

> > > from apraxia. As Marina just stated the following methods -as

> > > incredible as they are -are combined with appropriate and

> > > traditional speech and occupational therapies. As a wise

neuroMD

> > > once told us as the first apraxia conference

> > > " the brain responds to multiple stimuli "

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

> > >

> > > Please read the following and share with your child's

> > > pediatrician...this is cutting edge information to help your

child

> > > now. Nobody knows where these previously rare multifaceted

> > conditions like

> > > apraxia are coming from in alarming rising numbers -but

perhaps as

> > a group we

> > > can learn how to help our children today. Or you can wait for

the

> > > studies that are planned. You'll be able to read about them

here

> > > too.... in years.

> > >

> > > I know that " " doesn't always share who she is -we just

know

> > > her here as , but she is not 'just' , and

not 'just' a

> > > Mom, is also a highly respected pediatrician and

> > researcher -

> > > (as well as being a parent of a child with apraxia)

> > >

> > > You may see this message more than once - posted it

too...but

> > > I wanted to send this out as a special announcement to make

sure all

> > > receive this information. Nobody here will be able to say " why

> > > didn't you tell me?!! " Please share this with others who may

need

> > > to know too. And please share here what you find -like .

> > >

> > > Thank you for sharing -ironically, words can't express

my

> > > pride and happiness for ph and all those like him! Three

cheers

> > > for you too Dr. -you put the " Dr. Mom " in Dr.

Mom!

> > >

> > > From: " " <claudiamorris@> A

> > > "

Share this post


Link to post
Share on other sites
Guest guest

I have to ask, do any of these supplements come in a gummy bear form? It is so

painful to get my son to take anything at all, but he'll take those gummy bear

vitamins. But I can't find any that have iron, any minerals really or omega

3's, etc.... Anyone know if they exist?

Tera

" It is the mark of an educated mind to be able to entertain a thought without

accepting it " .

RE: [ ] Re: Important message you all want to

read...and share

I know nothing about vit K supplements - except that we give it to babies

since they are often deficient.

I am not yet supplementing with vit K, but it seems that some people do. It

is typically also given in an ADEK formulation (combo) to the cystic

fibrosis patients (who have malabsorption do to pancreas issues), so the

pulmonary folks have information on this. I suspect that one is a

prescription.

These vitamin levels can be drawn by Quest or whatever lab your insurance

covers. They are just probably a sendout. YOu need it ordered by you MD.

Impact of carnitine supplements may not be clinically obvious - but could be

helping strengthen heart muscle. Low levels are associated with a floppy

dilated weak heart, and when it approachs 10-20% of normal, sudden death can

occur. Carnitine is essential for normal cell/mitochondria function. It

allows fatty acids to get transported into the mitochondria (or the battery

of the cell). Major problems if this is not working properly. So you may be

getting benefits that you don't obviously see. One does not want to run

around with a severe carnitine deficiency and not treat it.

I had been wondering whether the EPA benefits we saw (which was the most

dramatic of the fish oil)...was vitamin E (even though it was only 15 IU a

dose, or an additional 45 IU a day). But we saw regression within 48 hours

off EPA when I ran out, even though I gave an additional 1/4 tsp of EFA

liquid to make up for it while I reorder more online. ph lost ALL the

gains he had from EPA. So I wonder...was it the higher EPA dose, or was it

the vit E? But even the increased vitamin E switching from liquid to

capsules over July 4 weekend created such a dramatic surge in ph that we

were in search of the explanation. ..which only came after he started

regressing again a few days after we switched back to the liquid form

(cutting his vitamin E dose by 90 IU a day). So lower doses seemed to make a

HUGE difference. However we didn't get a development of pain sensation until

we went to much higher doses. Fascinating.

-

Share this post


Link to post
Share on other sites
Guest guest

What brand are you using with Tanner (if you're ok posting it)? I,

too, had to do a bit of detective work at the natural foods store. I

thought if we knew of some brands that had the correct ingredients and

amount of gamma that it may be helpful when evaluating other products

as well.

Thanks

Kris

On Aug 24, 2006, at 3:10 PM, kiddietalk wrote:

> Don't feel bad - told me NOT to get the dl alpha vitamin E

> and I thought I didn't -so that was what I was using up till today!

> That L is so little...

>

> However about 2 weeks ago I added the natural gamma (which contains

> the natural alpha e) and I do have an update on Tanner that I didn't

> figure out was a breakthrough till I was speaking with

> yesterday.

>

> Last week as some of you know we drove to Disney to meet up with

> Dawn and her family -and the one day we almost didn't make it

> because Tanner had a loose baby tooth that was bothering him. So in

> the AM I took him to the dentist who showed me his Xray that showed

> it's just a baby tooth that will make it's way out -nothing wrong.

> We were around an hour into our trip when Tanner bit into a bagel

> and his baby tooth must have been loosened a bit - started to bleed

> and he just freaked out starting to cry how much pain he was in. I

> called the dentist's office -but they were out to lunch -and just

> didn't know what to do because Tanner was beside himself in

> pain...so I pulled into a rest stop and called Dawn and left a

> message about what was going on and that we were not going to make

> it.

>

> Reason this is strange...all the other times Tanner lost a baby

> tooth he's the one that just pulls it out -all bloody and all when

> it starts to bother him. I even joked with him the last time " Now

> don't go pulling out your good teeth or anything " because it

> freaked 'me' out that he could just pull out his loose teeth.

>

> The pain that Tanner had from biting in the bagel was horrible...but

> normal! Sometimes normal is horrible, like pain -and Tanner didn't

> feel it the same way prior. I am so excited about this vitamin E

> too. I took Tanner of the synthetic E -and am just giving him

> the " 100% natural High Gamma Tocopherol " from Vitamin World in our

> mall -and yes that contains the d alph vitamin E too. The one I had

> (the only gamma vitamin world carried) is 200 IU of vitamin E alpha

> and 200 mg of the gamma. I give Tanner 2 a day right now.

>

> Speech update -Tanner just switched schools this year and I asked

> him what he thought of the new one and he said " Mommy I spent three

> years at ____ and only one day at ____, it's too soon to know the

> difference " Very clear and well thought out sentences -pretty

> perfect I'd say. He's doing so well that we'll take even subtle

> improvements -but the pain thing is a big one -again I'm very

> excited!

>

> =====

>

Share this post


Link to post
Share on other sites
Guest guest

Oops... I read the label wrong. (Shame on me!) You're right. 15 I.U.

of vit e per capsule, not 30.

Thanks. I figured it was 400 in addition to the vit. e in the capsules

but just wanted to be sure.

Kris

On Aug 24, 2006, at 3:15 PM, jerzmomof4 wrote:

> Kris,

> My label reads 30 IU of vit e, per serving. 2 capsules make 1

> serving. (So 15 IU of vit.E in 1 capsule.)

> For 9 capsules (6EFA,and 3EPA)is 135IU of Vitamine E.

>

> I think is giving her son 400 IU in addition to the EFA'S and

> EPA. She also mentioned 15 IU in his daily multi-vitamin too. So you

> would have to add that in as well.

>

> Dawn in NJ

>

Share this post


Link to post
Share on other sites
Guest guest

It was ph's development of pain sensation that made me realize it was

time to post this and we were onto something significant here. Although

most would think to " feel no pain " is a good thing - my baby was pulling off

his bloody toenails, getting his hand stuck in doors and not responding etc.

Last winter I did my own little " hot and cold " challenge...because I didn't

know how far the " no pain " thing went. He clearly could differentiate

between hot and cold, and signed the correct temperatures (he was nonverbal

at the time...really not that long ago). Makes sense since temperature

sensation is different from pain sensation...but I just didn't know, and

didn't want him to burn himself. Anyway temperature was always intact. He

could also feel viceral pain. Ironic. It would have been nice if he was

spaced abdominal pain given the food allergy piece, but abdominal pain was

also processed. Just not deep muscle or extremity pain. The fact that a

vitamin E deficiency causes loss of vestibular, proprioception and pain

sensation - that's pretty much sensory integration dysfunction!!! And it

seems to be reversible!

[ ] Re: Important message you all want to

read...and share

Don't feel bad - told me NOT to get the dl alpha vitamin E

and I thought I didn't -so that was what I was using up till today!

That L is so little...

However about 2 weeks ago I added the natural gamma (which contains

the natural alpha e) and I do have an update on Tanner that I didn't

figure out was a breakthrough till I was speaking with

yesterday.

Last week as some of you know we drove to Disney to meet up with

Dawn and her family -and the one day we almost didn't make it

because Tanner had a loose baby tooth that was bothering him. So in

the AM I took him to the dentist who showed me his Xray that showed

it's just a baby tooth that will make it's way out -nothing wrong.

We were around an hour into our trip when Tanner bit into a bagel

and his baby tooth must have been loosened a bit - started to bleed

and he just freaked out starting to cry how much pain he was in. I

called the dentist's office -but they were out to lunch -and just

didn't know what to do because Tanner was beside himself in

pain...so I pulled into a rest stop and called Dawn and left a

message about what was going on and that we were not going to make

it.

Reason this is strange...all the other times Tanner lost a baby

tooth he's the one that just pulls it out -all bloody and all when

it starts to bother him. I even joked with him the last time " Now

don't go pulling out your good teeth or anything " because it

freaked 'me' out that he could just pull out his loose teeth.

The pain that Tanner had from biting in the bagel was horrible...but

normal! Sometimes normal is horrible, like pain -and Tanner didn't

feel it the same way prior. I am so excited about this vitamin E

too. I took Tanner of the synthetic E -and am just giving him

the " 100% natural High Gamma Tocopherol " from Vitamin World in our

mall -and yes that contains the d alph vitamin E too. The one I had

(the only gamma vitamin world carried) is 200 IU of vitamin E alpha

and 200 mg of the gamma. I give Tanner 2 a day right now.

Speech update -Tanner just switched schools this year and I asked

him what he thought of the new one and he said " Mommy I spent three

years at ____ and only one day at ____, it's too soon to know the

difference " Very clear and well thought out sentences -pretty

perfect I'd say. He's doing so well that we'll take even subtle

improvements -but the pain thing is a big one -again I'm very

excited!

=====

Share this post


Link to post
Share on other sites
Guest guest

Unless you are giving a specific vit E supplement, don't try to calculate

all the sources. Just give the extra 400 IU, plus a gamma that has 200-300

mg. If you find a good NATURAL vitamin E that combines both - fine. The soy

and rice allergic need to be careful because all products available OTC have

at least soy, and the gamma comes from rice.

[ ] Re: Important message you all want to

read...and share

Kris,

My label reads 30 IU of vit e, per serving. 2 capsules make 1

serving. (So 15 IU of vit.E in 1 capsule.)

For 9 capsules (6EFA,and 3EPA)is 135IU of Vitamine E.

I think is giving her son 400 IU in addition to the EFA'S and

EPA. She also mentioned 15 IU in his daily multi-vitamin too. So you

would have to add that in as well.

Dawn in NJ

Share this post


Link to post
Share on other sites
Guest guest

Now that I " m telling my mom this, she says that when her chickens have

neurological problems a dose of Vit E will usually clear it up. One of her

breeds is particulaly bad to have neuro problems. Vit. E almost always clears

it up. HUMM????!!!!!!!

I'm gonna try this too!!!

Sherry

" Oakes, " <susan.oakes@...> wrote:

Me too! Me too! THANK YOU!

________________________________

From:

[mailto: ] On Behalf Of maryebe

Sent: Wednesday, August 23, 2006 9:31 PM

Subject: [ ] Re: Important message you all want to

read...and share

What awesome news! Congrats, . I'm gonna try the vitamin E!

>

> I am posting this for Dr. who is an amazing member of

> this group, who has news to share of her own son's rapid recovery

> from apraxia. As Marina just stated the following methods -as

> incredible as they are -are combined with appropriate and

> traditional speech and occupational therapies. As a wise neuroMD

> once told us as the first apraxia conference

> " the brain responds to multiple stimuli "

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

<http://www.cherab.org/news/scientific.html>

>

> Please read the following and share with your child's

> pediatrician...this is cutting edge information to help your child

> now. Nobody knows where these previously rare multifaceted

conditions like

> apraxia are coming from in alarming rising numbers -but perhaps as a

group we

> can learn how to help our children today. Or you can wait for the

> studies that are planned. You'll be able to read about them here

> too.... in years.

>

> I know that " " doesn't always share who she is -we just know

> her here as , but she is not 'just' , and not 'just' a

> Mom, is also a highly respected pediatrician and researcher -

> (as well as being a parent of a child with apraxia)

>

> You may see this message more than once - posted it too...but

> I wanted to send this out as a special announcement to make sure all

> receive this information. Nobody here will be able to say " why

> didn't you tell me?!! " Please share this with others who may need

> to know too. And please share here what you find -like .

>

> Thank you for sharing -ironically, words can't express my

> pride and happiness for ph and all those like him! Three cheers

> for you too Dr. -you put the " Dr. Mom " in Dr. Mom!

>

> From: " " <claudiamorris@...> A

> "

Share this post


Link to post
Share on other sites
Guest guest

Yes we did the HLA testing done and it was negative.

>

> Thanks for all the info.

>

> When you say celiac ruled out, did you even have HLA testing done?

Through

> information I got on this site (thanks Kathy E), my middle son has

the

> " atypical " HLA associated with celiac disease, gluten ataxia and

other

> neuro symptomes. We are about to get ph tested to see if he too

has this

> HLA. Although my boys get VERY ill from gluten and milk, the celiac

panel is

> negative. I'm wondering whether this is a new and previously

unknown face of

> celiac disease possibly associated with DQ1 gene (rather than the

well known

> DQ2/DQ8 association). It would be great if so, since there would be

an

> easily measured marker. But this is all speculation on my part. -

>

>

> [ ] Re: Important message you all want to

> read...and share

>

>

> ,

>

> Took me awhile to write this up as it has been an evolvement of

sorts

> to where we are right now, my son has just turned 8, so we have been

> at this for best part of 3.5-4 years, so it didn't happen overnight.

> Where he is now, is not even what he was at when we started

> supplementation specifically for him in 2004. He is starting regular

> 3rd grade now, no academic/speech issues at all, and in todays

> educational environment for boys especially he is way beyond the

> other kids in class, even the girls. The past year his physical

> ability has finally caught up to his potential. Like I said you

> catching this early is so very important, less deficits to make up.

>

> Why were we looking at ADEK? Good question. If I remember correctly

> it was about end of 2003, my son was on Proefa and had the typical

> positive response most kids get from use. With my background, (thats

> the benefit of nursing school/NP over medical school, more emphasis

> is on nutritional side of health :) and nutritioanl deficiencies are

> shoved down your throat ALL THE TIME. With his response to oil

> supplementation,not unlike you, piqued my interest as to the why,

> what was behind it as their had to be a cause that one pill, could

> change so much. We got the speech improvements but not the physical

> strength, we had left side weakness, my son is left handed, at the

> time, no true dominance was there because of the deficit. He had no

> diagnosed syndrome, nothing beyond speechissue/SID/hypotonia/low

> energy. We did a complete workup, checked for guanidinoacetate

> methyltransferase deficiency and various aminoacidurias, full

> metabolic workup and part of that workup was vitamin levels. Vitamin

> A was low 20's reference range of 20-43. Vitamin D levels were also

> low norm, but further testing was done when we saw abnormalitiies on

> a hand x ray for growth, he was low grotwh since the age of 3, to

> see if it was a parathyroid issue which it wasn't. Vit E levels were

> a bit better than A but not a whole lot, K was also low normal.

>

> So that was the start of it. Although celiacs was ruled out, the

> doctor still he said although celiacs negative, those substances

> cause alot of inflammation even in non allergic people, so to lower

> overall inflammation suggested GF/CF soy free,Feingold type diet

for

> him along with the vitamin replacements, he was reactive to

sulfites

> ((corn syrup/high fructose corn syrup more than any other food

> products) going GF/CF etc., cleared the playing field so to speak,

> clean diet we had changes within days. He had environmental

allergies

> to trees/pollen/dust mites/mold, he did not have " typical " allerigc

> response, his response to these substances were more neurological

> symptoms/ inflammation. WE did serial end point sensitization which

> eliminated that within 2 pollen seasons. I think it is in the

> archieves, but my son who was low tone/low energy literally I think

> it was the first full week of the supplementation(at the time he was

> in 3 x a week PT,OT/ST) wheelbarrow walked from one end of the

center

> to the other about 30 feet. The week before, he would go about 5-10

> feet and collapse on his forearms did not have any strength. I was

> speechless as was the therapists working with him, as he had been

> going to them for 5 solid months and working on just this skill

> alone. A few days later, he ran the high school track w/o stopping

> (1/4 a mile, before this, he would run down our path 100 feet and

> that was it totally zapped, no energy at all.

>

> As to why, we still do not know why, he had flavorings of a whole

> host of childhood syndromes, but nothing clear cut, for instance

> lactate/pyruvate ratio was off, not in the range of mito, but, the

> ratio was still not smack normal either. He had what a celiac child

> would have as far as diagnostic criteria/differential, but did not

> have celiacs. So as of this moment it was classified as

malabsorption

> so, guess that is a new normal for these kids, as they all have

> malabsorption IMO.

> We tested immune function, that too, not grossly abnormal, yet not

> normal either, low NK cells, low activity, but still within range.He

> had a T2 shift to his immune system. He did also have mild metabolic

> acidosis on initial testing, to me it was, again,not right in the

> middle normal(negative for RTA).(I tend to overalnalyze lab values,

> but it has gotten us this far, and I haven't been too far off or

> wrong.

>

> What I used as far as supplementation goes for the ADEK at that time

> and since up till several months ago:

> Dr. Rons Blue Ice CLO for A and D 1/2 teaspoon daily

> X factor Gold butter oil(used this to balance the 3/6/9)about a 1/4

> teaspoon

> Vitamin E I have used different products Life extension Vitamin E

> succinate when succinate levels were low, no longer low, so I don't

> use that form now.

> I have used this brand like all their products

>

> http://www.yasoo.com/index.htm

> http://www.yasoo.com/aqua-e.htm

>

> My sons levels are fine now, and no need to do extra, beyond a

> particular brand multi vitamin I use that is specifically based on

> his needs right now.

>

> Vit E is RDA amount right now

>

> Vitamin D I use now 1000 IU of D3 in the winter, less in the summer

> months, due to outdoor sun exposure. Still use this and vitamin K

> separartely due to the past bone issuess

>

> We also had low carnitine, thiamine levels, we did supplement those,

> Alongside the carnitine at that time we used CoQ10/NADH/Idebenone

> gave about 1/2 dose of each rotating a different one everyday.I

still

> give these at lower doses.

>

>

> http://www.smart-drugs.net/info-idebenone.htm

>

>

> (niacin/nicotinamide levels were low too) we used NADH as niacin is

> tricky to get righ, and NADH helps reduce glutathione oxidation.So

> a mini mito cocktail, as mito cocktail supplementation is WAY

higher,

> so like I said earlier, he was a sprinkling of different things.

That

> is how I attacked this, one piece at a time, because it was pieces

of

> a whole that was not working right.

>

> I want to make sure anyone reading this understand this was

> particular to my child, his deficiencies, and would not suggest

> anyone just start supplementing things without doing the follow up

> with a nutritionist/or md that specializes in these types of things.

> You supplement one thing, and you can very easily throw off

something

> else. As long as you understand ADEK are synsergistic vitamins, and

> really need to be in a balance. Too much A long term can be

dangerous

> and detrimental to bone development, and as mentioned too

> much E can impede Vitamin K and blood clotting. As long as you keep

> in mind what RDA amounts are, and you do not go to far above and

> beyond that. More isn't alwasys better as far as this is concerned.

>

> Right now we are at point of further growth, I found another piece

of

> information in regards to his methylation pathways that has garnered

> us further positive aspects of overall growth. He has physically

> shot up from a mere 5% height and weight at the age of 3-7.5, to the

> 50% range, this was about the last hurdle we had to get over, as

from

> birth to 3 he was @ 75% in height and weight, took a slow decline

> around months 18-36, whatever occured then. He has grown 2.5 inches

> since March of this year. That is whole years growth in 5 months

> time, so I know things are finally in order.

>

> I do depend more on foods as his source of vitamins like more

> antioxidants, He has done so well with what we did, and honestly it

> was mostly on our own, with alot of detective work.

>

> I attended many conferences/alternative medicine/just to broaden my

> views and help me forge a plan of attack, believe me a TON of

> fluff/misinformation out there, so it wasn't easy. Now, I view

> health/illness in a totally different view than how I was trained.

>

> Sorry to have gotten SO long winded, but that's the story. Perhaps

> you can gain some info from our journey.

> Colleen

>

Share this post


Link to post
Share on other sites
Guest guest

Yes we did the HLA testing done and it was negative.

>

> Thanks for all the info.

>

> When you say celiac ruled out, did you even have HLA testing done?

Through

> information I got on this site (thanks Kathy E), my middle son has

the

> " atypical " HLA associated with celiac disease, gluten ataxia and

other

> neuro symptomes. We are about to get ph tested to see if he too

has this

> HLA. Although my boys get VERY ill from gluten and milk, the celiac

panel is

> negative. I'm wondering whether this is a new and previously

unknown face of

> celiac disease possibly associated with DQ1 gene (rather than the

well known

> DQ2/DQ8 association). It would be great if so, since there would be

an

> easily measured marker. But this is all speculation on my part. -

>

>

> [ ] Re: Important message you all want to

> read...and share

>

>

> ,

>

> Took me awhile to write this up as it has been an evolvement of

sorts

> to where we are right now, my son has just turned 8, so we have been

> at this for best part of 3.5-4 years, so it didn't happen overnight.

> Where he is now, is not even what he was at when we started

> supplementation specifically for him in 2004. He is starting regular

> 3rd grade now, no academic/speech issues at all, and in todays

> educational environment for boys especially he is way beyond the

> other kids in class, even the girls. The past year his physical

> ability has finally caught up to his potential. Like I said you

> catching this early is so very important, less deficits to make up.

>

> Why were we looking at ADEK? Good question. If I remember correctly

> it was about end of 2003, my son was on Proefa and had the typical

> positive response most kids get from use. With my background, (thats

> the benefit of nursing school/NP over medical school, more emphasis

> is on nutritional side of health :) and nutritioanl deficiencies are

> shoved down your throat ALL THE TIME. With his response to oil

> supplementation,not unlike you, piqued my interest as to the why,

> what was behind it as their had to be a cause that one pill, could

> change so much. We got the speech improvements but not the physical

> strength, we had left side weakness, my son is left handed, at the

> time, no true dominance was there because of the deficit. He had no

> diagnosed syndrome, nothing beyond speechissue/SID/hypotonia/low

> energy. We did a complete workup, checked for guanidinoacetate

> methyltransferase deficiency and various aminoacidurias, full

> metabolic workup and part of that workup was vitamin levels. Vitamin

> A was low 20's reference range of 20-43. Vitamin D levels were also

> low norm, but further testing was done when we saw abnormalitiies on

> a hand x ray for growth, he was low grotwh since the age of 3, to

> see if it was a parathyroid issue which it wasn't. Vit E levels were

> a bit better than A but not a whole lot, K was also low normal.

>

> So that was the start of it. Although celiacs was ruled out, the

> doctor still he said although celiacs negative, those substances

> cause alot of inflammation even in non allergic people, so to lower

> overall inflammation suggested GF/CF soy free,Feingold type diet

for

> him along with the vitamin replacements, he was reactive to

sulfites

> ((corn syrup/high fructose corn syrup more than any other food

> products) going GF/CF etc., cleared the playing field so to speak,

> clean diet we had changes within days. He had environmental

allergies

> to trees/pollen/dust mites/mold, he did not have " typical " allerigc

> response, his response to these substances were more neurological

> symptoms/ inflammation. WE did serial end point sensitization which

> eliminated that within 2 pollen seasons. I think it is in the

> archieves, but my son who was low tone/low energy literally I think

> it was the first full week of the supplementation(at the time he was

> in 3 x a week PT,OT/ST) wheelbarrow walked from one end of the

center

> to the other about 30 feet. The week before, he would go about 5-10

> feet and collapse on his forearms did not have any strength. I was

> speechless as was the therapists working with him, as he had been

> going to them for 5 solid months and working on just this skill

> alone. A few days later, he ran the high school track w/o stopping

> (1/4 a mile, before this, he would run down our path 100 feet and

> that was it totally zapped, no energy at all.

>

> As to why, we still do not know why, he had flavorings of a whole

> host of childhood syndromes, but nothing clear cut, for instance

> lactate/pyruvate ratio was off, not in the range of mito, but, the

> ratio was still not smack normal either. He had what a celiac child

> would have as far as diagnostic criteria/differential, but did not

> have celiacs. So as of this moment it was classified as

malabsorption

> so, guess that is a new normal for these kids, as they all have

> malabsorption IMO.

> We tested immune function, that too, not grossly abnormal, yet not

> normal either, low NK cells, low activity, but still within range.He

> had a T2 shift to his immune system. He did also have mild metabolic

> acidosis on initial testing, to me it was, again,not right in the

> middle normal(negative for RTA).(I tend to overalnalyze lab values,

> but it has gotten us this far, and I haven't been too far off or

> wrong.

>

> What I used as far as supplementation goes for the ADEK at that time

> and since up till several months ago:

> Dr. Rons Blue Ice CLO for A and D 1/2 teaspoon daily

> X factor Gold butter oil(used this to balance the 3/6/9)about a 1/4

> teaspoon

> Vitamin E I have used different products Life extension Vitamin E

> succinate when succinate levels were low, no longer low, so I don't

> use that form now.

> I have used this brand like all their products

>

> http://www.yasoo.com/index.htm

> http://www.yasoo.com/aqua-e.htm

>

> My sons levels are fine now, and no need to do extra, beyond a

> particular brand multi vitamin I use that is specifically based on

> his needs right now.

>

> Vit E is RDA amount right now

>

> Vitamin D I use now 1000 IU of D3 in the winter, less in the summer

> months, due to outdoor sun exposure. Still use this and vitamin K

> separartely due to the past bone issuess

>

> We also had low carnitine, thiamine levels, we did supplement those,

> Alongside the carnitine at that time we used CoQ10/NADH/Idebenone

> gave about 1/2 dose of each rotating a different one everyday.I

still

> give these at lower doses.

>

>

> http://www.smart-drugs.net/info-idebenone.htm

>

>

> (niacin/nicotinamide levels were low too) we used NADH as niacin is

> tricky to get righ, and NADH helps reduce glutathione oxidation.So

> a mini mito cocktail, as mito cocktail supplementation is WAY

higher,

> so like I said earlier, he was a sprinkling of different things.

That

> is how I attacked this, one piece at a time, because it was pieces

of

> a whole that was not working right.

>

> I want to make sure anyone reading this understand this was

> particular to my child, his deficiencies, and would not suggest

> anyone just start supplementing things without doing the follow up

> with a nutritionist/or md that specializes in these types of things.

> You supplement one thing, and you can very easily throw off

something

> else. As long as you understand ADEK are synsergistic vitamins, and

> really need to be in a balance. Too much A long term can be

dangerous

> and detrimental to bone development, and as mentioned too

> much E can impede Vitamin K and blood clotting. As long as you keep

> in mind what RDA amounts are, and you do not go to far above and

> beyond that. More isn't alwasys better as far as this is concerned.

>

> Right now we are at point of further growth, I found another piece

of

> information in regards to his methylation pathways that has garnered

> us further positive aspects of overall growth. He has physically

> shot up from a mere 5% height and weight at the age of 3-7.5, to the

> 50% range, this was about the last hurdle we had to get over, as

from

> birth to 3 he was @ 75% in height and weight, took a slow decline

> around months 18-36, whatever occured then. He has grown 2.5 inches

> since March of this year. That is whole years growth in 5 months

> time, so I know things are finally in order.

>

> I do depend more on foods as his source of vitamins like more

> antioxidants, He has done so well with what we did, and honestly it

> was mostly on our own, with alot of detective work.

>

> I attended many conferences/alternative medicine/just to broaden my

> views and help me forge a plan of attack, believe me a TON of

> fluff/misinformation out there, so it wasn't easy. Now, I view

> health/illness in a totally different view than how I was trained.

>

> Sorry to have gotten SO long winded, but that's the story. Perhaps

> you can gain some info from our journey.

> Colleen

>

Share this post


Link to post
Share on other sites
Guest guest

Hey Kris,

I wrote the brand name and dosage and how much I'm using (knew you

guys would ask!) but as always I write so much other stuff it got

lost in the message -so here it is again:

'100% natural High Gamma Tocopherol " from Vitamin World in our

mall -and yes that contains the d alph vitamin E too. The one I had

(the only gamma vitamin world carried) is 200 IU of vitamin E alpha

and 200 mg of the gamma. I give Tanner 2 a day right now. "

In other words -the name isn't " vitamin E " it's called instead " High

Gamma Tocopherol " but the one I'm using from Vitamin World (from our

local mall) is a blend -so it has the alpha & other types of E in it. Here's a

link to the one I'm using -but I'm sure you can search for something

like it at your local health food store too:

" High Gamma Tocopherol Softgels - Vitamin World

Recent scientific studies recognize the unique features of gamma-

tocopherol as an important Vitamin E component.* High Gamma

Tocopherol is a concentrated blend of both gamma- and alpha-

tocopherols (plustocotrienols), which support prostate health and

have exceptional antioxidant and heart support properties.* "

http://www.vitaminworld.com/pages/Categories.asp?xs= & CID=69

(scroll down -there are other Es on the page)

On the site and at the mall it's buy one get one 1/2 price -so I got

two of the larger bottles -it's the best value. The dosage of this

brand is low -which is why I give Tanner the two.

=====

Share this post


Link to post
Share on other sites
Guest guest

Hey Kris,

I wrote the brand name and dosage and how much I'm using (knew you

guys would ask!) but as always I write so much other stuff it got

lost in the message -so here it is again:

'100% natural High Gamma Tocopherol " from Vitamin World in our

mall -and yes that contains the d alph vitamin E too. The one I had

(the only gamma vitamin world carried) is 200 IU of vitamin E alpha

and 200 mg of the gamma. I give Tanner 2 a day right now. "

In other words -the name isn't " vitamin E " it's called instead " High

Gamma Tocopherol " but the one I'm using from Vitamin World (from our

local mall) is a blend -so it has the alpha & other types of E in it. Here's a

link to the one I'm using -but I'm sure you can search for something

like it at your local health food store too:

" High Gamma Tocopherol Softgels - Vitamin World

Recent scientific studies recognize the unique features of gamma-

tocopherol as an important Vitamin E component.* High Gamma

Tocopherol is a concentrated blend of both gamma- and alpha-

tocopherols (plustocotrienols), which support prostate health and

have exceptional antioxidant and heart support properties.* "

http://www.vitaminworld.com/pages/Categories.asp?xs= & CID=69

(scroll down -there are other Es on the page)

On the site and at the mall it's buy one get one 1/2 price -so I got

two of the larger bottles -it's the best value. The dosage of this

brand is low -which is why I give Tanner the two.

=====

Share this post


Link to post
Share on other sites
Guest guest

-- Opinion please??

Like these? I tend to think that Source Naturals brand is better --

but do you have an opinion?

http://www.vitacost.com/SourceNaturalsGammaE400

http://www.vitacost.com/NSI-Gamma-E-Tocopherol-Complex-425-mg-200-IU-

60-Softgels

>

> Unless you are giving a specific vit E supplement, don't try to

calculate

> all the sources. Just give the extra 400 IU, plus a gamma that has

200-300

> mg. If you find a good NATURAL vitamin E that combines both -

fine. The soy

> and rice allergic need to be careful because all products available

OTC have

> at least soy, and the gamma comes from rice.

>

>

>

>

> [ ] Re: Important message you all want to

> read...and share

>

>

> Kris,

> My label reads 30 IU of vit e, per serving. 2 capsules make 1

> serving. (So 15 IU of vit.E in 1 capsule.)

> For 9 capsules (6EFA,and 3EPA)is 135IU of Vitamine E.

>

> I think is giving her son 400 IU in addition to the EFA'S

and

> EPA. She also mentioned 15 IU in his daily multi-vitamin too. So you

> would have to add that in as well.

>

> Dawn in NJ

>

Share this post


Link to post
Share on other sites
Guest guest

-- Opinion please??

Like these? I tend to think that Source Naturals brand is better --

but do you have an opinion?

http://www.vitacost.com/SourceNaturalsGammaE400

http://www.vitacost.com/NSI-Gamma-E-Tocopherol-Complex-425-mg-200-IU-

60-Softgels

>

> Unless you are giving a specific vit E supplement, don't try to

calculate

> all the sources. Just give the extra 400 IU, plus a gamma that has

200-300

> mg. If you find a good NATURAL vitamin E that combines both -

fine. The soy

> and rice allergic need to be careful because all products available

OTC have

> at least soy, and the gamma comes from rice.

>

>

>

>

> [ ] Re: Important message you all want to

> read...and share

>

>

> Kris,

> My label reads 30 IU of vit e, per serving. 2 capsules make 1

> serving. (So 15 IU of vit.E in 1 capsule.)

> For 9 capsules (6EFA,and 3EPA)is 135IU of Vitamine E.

>

> I think is giving her son 400 IU in addition to the EFA'S

and

> EPA. She also mentioned 15 IU in his daily multi-vitamin too. So you

> would have to add that in as well.

>

> Dawn in NJ

>

Share this post


Link to post
Share on other sites
Guest guest

Bumping >

> -- Opinion please??

> Like these? I tend to think that Source Naturals brand is better --

> but do you have an opinion?

>

> http://www.vitacost.com/SourceNaturalsGammaE400

>

> http://www.vitacost.com/NSI-Gamma-E-Tocopherol-Complex-425-mg-200-

IU-

> 60-Softgels

>

>

>

>

> >

> > Unless you are giving a specific vit E supplement, don't try to

> calculate

> > all the sources. Just give the extra 400 IU, plus a gamma that

has

> 200-300

> > mg. If you find a good NATURAL vitamin E that combines both -

> fine. The soy

> > and rice allergic need to be careful because all products

available

> OTC have

> > at least soy, and the gamma comes from rice.

> >

> >

> >

> >

> > [ ] Re: Important message you all want

to

> > read...and share

> >

> >

> > Kris,

> > My label reads 30 IU of vit e, per serving. 2 capsules make 1

> > serving. (So 15 IU of vit.E in 1 capsule.)

> > For 9 capsules (6EFA,and 3EPA)is 135IU of Vitamine E.

> >

> > I think is giving her son 400 IU in addition to the EFA'S

> and

> > EPA. She also mentioned 15 IU in his daily multi-vitamin too. So

you

> > would have to add that in as well.

> >

> > Dawn in NJ

> >

>

Share this post


Link to post
Share on other sites
Guest guest

Bumping >

> -- Opinion please??

> Like these? I tend to think that Source Naturals brand is better --

> but do you have an opinion?

>

> http://www.vitacost.com/SourceNaturalsGammaE400

>

> http://www.vitacost.com/NSI-Gamma-E-Tocopherol-Complex-425-mg-200-

IU-

> 60-Softgels

>

>

>

>

> >

> > Unless you are giving a specific vit E supplement, don't try to

> calculate

> > all the sources. Just give the extra 400 IU, plus a gamma that

has

> 200-300

> > mg. If you find a good NATURAL vitamin E that combines both -

> fine. The soy

> > and rice allergic need to be careful because all products

available

> OTC have

> > at least soy, and the gamma comes from rice.

> >

> >

> >

> >

> > [ ] Re: Important message you all want

to

> > read...and share

> >

> >

> > Kris,

> > My label reads 30 IU of vit e, per serving. 2 capsules make 1

> > serving. (So 15 IU of vit.E in 1 capsule.)

> > For 9 capsules (6EFA,and 3EPA)is 135IU of Vitamine E.

> >

> > I think is giving her son 400 IU in addition to the EFA'S

> and

> > EPA. She also mentioned 15 IU in his daily multi-vitamin too. So

you

> > would have to add that in as well.

> >

> > Dawn in NJ

> >

>

Share this post


Link to post
Share on other sites
Guest guest

> >

> > Unless you are giving a specific vit E supplement, don't try to

> calculate

> > all the sources. Just give the extra 400 IU, plus a gamma that

has

> 200-300

> > mg. If you find a good NATURAL vitamin E that combines both -

> fine. The soy

> > and rice allergic need to be careful because all products

available

> OTC have

> > at least soy, and the gamma comes from rice.

> >

> >

> >

> >

> > [ ] Re: Important message you all

want to

> > read...and share

> >

> >

> > Kris,

> > My label reads 30 IU of vit e, per serving. 2 capsules make 1

> > serving. (So 15 IU of vit.E in 1 capsule.)

> > For 9 capsules (6EFA,and 3EPA)is 135IU of Vitamine E.

> >

> > I think is giving her son 400 IU in addition to the

EFA'S

> and

> > EPA. She also mentioned 15 IU in his daily multi-vitamin too. So

you

> > would have to add that in as well.

> >

> > Dawn in NJ

> >

>

Share this post


Link to post
Share on other sites
Guest guest

> > >

> > > Some interesting comments on the Hopkins study you are asking

> about

> > are

> > > attached below. Some studies can be very misleading, especially

> > depending

> > > upon how the statistics are run. But this is the sort of story

> that

> > makes

> > > headlines. My crazy experience with the media...I published an

> > asthma study

> > > in 2004 that demonstrated that arginine levels (an amino acid

in

> > nuts and

> > > peanutbutter) are low in acute asthma. The newspapers tried to

> get

> > me to say

> > > that peanutbutter would treat asthma...that WAS NOT my

> conclusion,

> > nor would

> > > I say that (although I would love it if SKIPPY wants to fund my

> > studies -

> > > but again, what makes news is often far from the truth). The

> > newsclip intro

> > > to the local TV news broadcast was that " Oakland researcher

> finds a

> > cure for

> > > asthma " , while showing pictures of the local grocery store

> > peanutbutter

> > > isle. OK, I wanted to hide, but had to follow that intro and

try

> to

> > redirect

> > > them. My kids thought it was cool regardless.

> > >

> > > Also, ONLY one vitamin E study showed statistically increased

> risk

> > of death

> > > (as opposed to the other 13 studies demonstrating benefits). It

> was

> > a

> > > meta-analysis, or a statistical sum of all the studies, so

> > misleading. In

> > > addition, the methods and doses used in each individual study

was

> > > different - as were the type of patients involved in each of

the

> 14

> > studies.

> > > Many patients were on other vitamin supplements, so impossible

to

> > tell what

> > > effect was from what, and most of the patients were using

> synthetic

> > vs.

> > > natural vitamin E. There is a difference between synthetic and

> > natural, and

> > > the synthetic E may deplete or impact natural vit E effects.

> Also

> > if our

> > > apraxic kids end up having an increased consumption/utilization

> of

> > vitamin

> > > E, decreased absorption or abnormal metabolism of vitamin

E...any

> > mechanism

> > > that may increase the body's need for vitamin E - these kids

> would

> > be in a

> > > different catagory than the normal person on the street

without a

> > > deficiency. Give a bolus of insulin to a non-diabetic, and you

> may

> > kill

> > > them. However insulin is life saving for those whose body can't

> > make it.

> > > Not to say vitamin E is like insulin, but in a way...I did tell

> my

> > > pediatrician after one of ph's regressions off fish oil,

> that I

> > felt

> > > like it was in fact his " insulin " , and without it...his brain

> just

> > fell

> > > apart.

> > >

> > > See below for a commentary written about the Hopkins report. It

> may

> > clarify

> > > things. Regardless, a dose of 400 IU a day is benign for a

> > child...but it

> > > should be NATURAL, not synthetic. The label should read " alpha-

d-

> > tocophorol "

> > > and NOT alpha-dl-tocophorol. Its the " dl " that tells you its

> > synthetic, but

> > > easy to miss this small differentiation. In addition, gamma

> > tocophorol

> > > should be used...and it comes in 200-300 mg gel caps. One

alpha

> > and one

> > > gamma a day is a good safe dose...until we know more. But this

is

> > why it may

> > > make sense to check vitamin E plasma levels first, since a

> > documented

> > > vitamin E deficiency may suggest the need for even higher

doses.

> > To give

> > > you an idea, the recommended dose for vitamin E deficiency

> related

> > > neuropathy, or nerve/brain damage (???which some of our apraxic

> > kids may

> > > just have???) is 100 mg/kg/day (or 140 IU/kg/d). This is a VERY

> > high dose,

> > > and is indicated for Vit E deficiency syndromes, and something

> that

> > should

> > > be monitored closely by an MD or nutritionalist. But this dose

> is

> > indicated

> > > for certain disease states of deficiency, and essential to

these

> > particular

> > > patients in order to treat their condition. For apraxia - we

> don't

> > know if

> > > there is a deficiency that can be identified by a blood test,

or

> if

> > patients

> > > need higher than normal levels to fix neurological symptoms for

> > some other

> > > reason. All I know is that omega 3 worked wonders in helping

my

> son

> > > progress with aggressive ST and OT. Yet Vitamin E is

causing/has

> > caused a

> > > resolution of ALL symptoms of global apraxia/hypotonia and SID.

> My

> > son also

> > > has been identified recently with a severe carnitine

deficiency.

> > This is not

> > > routinely checked in apraxia. Maybe is should be. This may be

> > uncommon -

> > > however to have this undiagnosed and untreated can lead to

sudden

> > death.

> > > Scary. We are getting all my kids checked for low carnitine, in

> > case it is

> > > some genetic red herring totally unrelated to apraxia. However

> > since it is

> > > commonly reported in children with autism, I suspect this may

not

> > be that

> > > rare. One never knows until one really looks. Although

Vitamin E

> > is an

> > > unlikely culprit, sometimes the most complicated problems still

> > have a

> > > simple answer.

> > >

> > > Unfortunately the sensationalism of headline news may scare

> people

> > away from

> > > potentially good treatments. Just like the fear of fish oil. I

> > think it is

> > > good to ask questions though, and not take the " unknown " at

face

> > value. So I

> > > don't take your question the wrong way. It is actually an

> excellent

> > > question, since it is so hard to sift through the literature

and

> > figure out

> > > what is and isn't valid. It is also possible that what we are

> > experiencing

> > > with my boy is a fluke from some weird genetics specific to my

> son.

> > But

> > > since he sounds like the posterchild for global apraxia, I

don't

> > think this

> > > will be an isolated observation, particularly in kids who

respond

> > to omega

> > > supplements. Without my own relentless " why " - my son would

> still

> > be

> > > severely impaired. -

> >

>

Share this post


Link to post
Share on other sites
Guest guest

> >

> > Unless you are giving a specific vit E supplement, don't try to

> calculate

> > all the sources. Just give the extra 400 IU, plus a gamma that

has

> 200-300

> > mg. If you find a good NATURAL vitamin E that combines both -

> fine. The soy

> > and rice allergic need to be careful because all products

available

> OTC have

> > at least soy, and the gamma comes from rice.

> >

> >

> >

> >

> > [ ] Re: Important message you all

want to

> > read...and share

> >

> >

> > Kris,

> > My label reads 30 IU of vit e, per serving. 2 capsules make 1

> > serving. (So 15 IU of vit.E in 1 capsule.)

> > For 9 capsules (6EFA,and 3EPA)is 135IU of Vitamine E.

> >

> > I think is giving her son 400 IU in addition to the

EFA'S

> and

> > EPA. She also mentioned 15 IU in his daily multi-vitamin too. So

you

> > would have to add that in as well.

> >

> > Dawn in NJ

> >

>

Share this post


Link to post
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
Sign in to follow this  

×
×
  • Create New...