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

[Guest guest]

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.

-

[ ] Re: Important message you all want to

read...and share

Ok, you lost me a bit. Do you test for vitamins A, E, D and K through

a standard lab like CPL or Quest? Or is this through a specialized

lab? How much vit E and vit K are you giving? Where do you get Vitamin

K - I've never seen it at Whole Foods or any of my online vitamin

stores. I would love to hear more about this. My kids have both been

on carnitine for long periods of time, and it alone has never helped

their hypotonia.

Wow, I would be amazed if that small bit if vit E in carnaware played

a major part in my daughter's recovery from apraxia!

Please point me to more info about vitamin K and learning disorders.

Thanks!

> > >

> > > 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

> > > "

[Guest guest]

Hi ,

I just went to GNC and bought their Isomer E vitamin supplement. It says

Vitamin E (d-alpha Tocopherol) 400 IU as the main ingredient. Then

listed below that it says proprietary isomer E blend of d-alpha,

d-gamma, d-delta and d-beta tocopherols. I couldn't find any Vitamin E

supplements that contained just d-alpha and d-gamma.

I'm a little confused. Are there 2 separate products that you are using,

one that has d-alpha and one that is d-gamma? Or did you find one

supplement that contained both of these? Do you think it would be

effective to use this one that is a blend, including the d-delta and

d-beta forms? Do you know if these forms were also in the product you

were using?

Thanks so much for sharing this information with all of us. I'm so happy

to read of all the great results that you've seen.

Thanks again,

Becky McFarland

________________________________

From:

[mailto: ]

Sent: Thursday, August 24, 2006 3:32 PM

Subject: [ ] Digest Number 3022

<http://www.apraxia.cc>

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

< /message/50766;_ylc=X3

oDMTJxOXYyaHY1BF9TAzk3MzU5NzE1BGdycElkAzQyNjcwNQRncnBzcElkAzE2MDAxMjYxNz

EEbXNnSWQDNTA3NjYEc2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTE1NjQ1MTUxNQ-->

Posted by: " " claudiamorris@...

<mailto:claudiamorris@...?Subject=%20Re%3A%20Important%20message

%20you%20all%20want%20to%20read%2E%2E%2Eand%20share>

Thu Aug 24, 2006 4:05 am (PST)

I don't think anyone should be increasing a dose past this without close

supervision of an MD or nutritionalist, and following levels...until we

have

more information. " Do no harm " is key.

I get the alpha " d " tocophorol and gamma from the general health food

store.

There is also an on-line soy free " Dr. Ron's ultra pure vitamin E " . I

have

to look into this product as it combines alpha and gamma, and is soy

free

(but expensiver - more so that the health food store which may be just

as

good). I think its a capsule though - which may be more difficult to get

the

kids to take. There is also a water soluable vitamin E preparation that

the

cystic fibrosis kids take. So still a lot more to learn. Honestly I am

no

expert on this - I literally just started reading up on vitamin E,

symptoms

of deficiency and types of supplements early July. If I had given my

nutritional courses more attention in med school, maybe I would have

recognized that all the signs of vitamin E deficiency sound like apraxia

and

SID. Better late than never.

[Guest guest]

I know about vitamin K -too well.

It's like some horrible back flash for me because in addition to

being diagnosed celiac as a baby and growing up on a GFCF diet that

saved my life...I HAD to take vitamin K as a child because I had

some weird bleeding and bruising thing going on (I had to be rushed

to the hospital a few times I wouldn't stop bleeding if I was cut

and would bruise if you looked at me) and supposedly the vitamin K

helped with clotting.

I was tested for everything and don't have any condition and don't

seem to have a problem with bleeding or even brusing as I grew up -I

seemed to outgrow it.

If anyone says " our children are iron deficient/borderline anemic

and need to eat liver "

(yes that too -can you believe I had to grow up not eating sweets

but eating liver?!)

I'm shutting my computer off for the night! )

=====

[Guest guest]

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

[Guest guest]

In addtion. Its still not enough - but with an additional 400 IU, if you are

going to see results, you will see them.

[ ] Re: Important message you all want to

> read...and share

>

> ,, and everyone.

> That is VERY interesting, and VERY inspiring to hear about ph.

> It makes me want to try Vit. E supplement with my daughter.

>

> I too did a little reading about the signs/symptoms related to vit e

> deficiency. It turns out (according to Merck) Abby has had most of

> them too. (including ophthalmoplegia) If you recall I once posted how

> her eyes made very fast jerky movements. She did this 2x in the

> hospital as a newborn, then again shortly after coming home. When I

> told her pediatrician, he claimed to examine her, and I quote " there

> doesn't seem to be anything wrong "

>

> While reading the signs/symptoms, I continued to look up the Vitamin

> E information. One of the pages I read was from the Hopkins

> Medicine webpage.

> /post?

> act=reply & mess

> ageNum=50746

>

> They claim to have done a study on vitamin E supplentation. And their

> conclusion is high doses, (Over 400 IU) may have a higher overall

> risk of dying. They go on to say most of the people in their study

> are over age 60, and not all were in perfect health.

>

> I only bring this up, because it does concern me, that in effort to

> help, we " might " inadvertantly hurt our children. With your medical

> expertise, maybe you can shed some light on this issue/study.

>

> Please do not take my questions the wrong way. I am certainly not

> trying to disprove your claim, nor am I trying to persuade anyone

> from NOT trying a new option to help our children. I just want

> reassurance.

>

> Thank you..

> Dawn in NJ

>

> In , " kiddietalk "

> <kiddietalk@...> wrote:

> >

> > 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

> > "

[Guest guest]

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!

=====

[Guest guest]

This is fascinating giving the genetic & clinical association of celiac and

diabetes...given that patients with celiac disease likely have issues around

ALL the fat soluable vitamins because of malabsorption. -

[ ] Re: Important message you all want to

read...and share

,

There are alot of moms I know that have kids with various neuro type

symptoms, that also have the same results with K supplementation. We

use Life Extension brand one every other day. The cognitve cobweb

clearing was huge. I never realized amount of change K would bring,

it balanced out my sons mood, he would get very frustrated right

before meals, sort of resembling a mild hypoglycemia, but never

tested out. But it was exactly what he would be like as a toddler,

more of an issue when he was between 2-3 if too much time went

between meals. When further researching Vit K there is a very big

connection between Vitamin K and pancreatic function, although my

sons pancreatic function is fine, I did find the studies out there in

regards to insulin/glucose loading and vitamin K status. Honestly

this puts a whole new spin on chronic illness such a s diabetes and

vitamin response.

Relationship between acute insulin response and vitamin K intake in

healthy young male volunteers.Sakamoto N, Nishiike T, Iguchi H,

Sakamoto K.

Department of Hygiene, Hyogo College of Medicine, Nisinomiya, Japan.

naomasas@...

To evaluate the effects of vitamin K (VK) on pancreatic function,

especially on acute insulin response, 25 healthy young male

volunteers were given an oral load of 75 g of glucose, and their mean

daily VK intake was estimated by a one-week food check list. After

excluding low (<20) and high (> or =25) body mass index (BMI)

subjects, the remaining 16 participants were divided into three semi-

equal groups according to VK intake. Blood VK status of the low VK

intake group tended to be poorer than that of the high intake group

(median of 5 samples: prothrombin time; 12.5 vs 12.2s and protein-

induced VK absence-factor-II; 23 vs 15 mAU/ml), but fasting plasma

glucose status was not markedly different between both groups:

[plasma glucose (PG); 87 vs 86 mg/dl, immunoreactive insulin (IRI);

6.7 vs 5.3 microU/ml, HbA1c; 4.8 vs 4.9%]. However, at 30 min after

glucose loading, PG of the low VK intake group tended to be higher

than those of the high intake group (160 vs 145 mg/dl) and IRI was

lower (36.1 vs 52.3 microU/ml). Insulinogenic index (incremental

IRI/incremental PG, 0-30 min) of the low VK intake group was

significantly lower than that of the high intake group (0.4 vs 0.9).

These results suggested that VK may play an important role on the

acute insulin response in glucose tolerance

>

> This is excellent. Thanks for sending. We are actually getting ADEK

checked

> with the next blood draw. I am worried about vit K since I suspect

we will

> find a low level and it is the one potential adverse effect of high

dose vit

> E - lower K and bleeding. I didn't know Vit K had any effects

outside of

> bleeding, so this really is good stuff. -

[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

> > > "

[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.

-

[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!

>

> =====

>

[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

>

[Guest guest]

Peanuts and peanutbutter (organic without all the sugar and salt) ARE

actually very healthy (unless you are nut allergic). There was a study a few

years back that showed that peanuts improved diabetic control - and I was

like - yes...its the ARGININE. In fact foods high in arginine may in fact

turn out to be good for asthma...but that was not what my particular study

was investigating. (But the media often does not let the truth get in the

way of a good headline). The number of calls I got after that

broadcast...people hunting me down...wanting to go off all their appropriate

asthma inhalers...ugh. I have really avoided the media since. But brings us

back the the concept of healthy, natural and unprocessed foods are good for

us, and there is definitely more to nutrition and good health than it is

given credit for. (An apple a day...)

[ ] Re: Important message you all want to

read...and share

,

Thank you, Thank you, Thank you. This is exactly what I need to hear

or read rather.

We all have fallen victim to conflicting reports from the media about

medical studies,findings, and their reports.

And to make light on your peanut butter study.. I know my son would

be THRILLED to be told peanut butter " could " cure his excersized

induced asthma. He loves pb so much, he melts a few tablespoons in a

small dish, then pours it over his vanilla icecream! (Actually, its

very yummy.)

Again thank you for clarifing for me. And thank you for your

understanding my position of wanting further info regarding the

hopkins study.

Dawn in NJ

>

> 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. -

[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!

=====

[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

[Guest guest]

,

Thank you for posting about the Vit. E and thank you also for you

wonderful comments about media hype and research reports. I do have

one question for clarification. In the Pro EFA and Pro EPA gel caps

there are 30 i.u. of Vit. E per gel cap. I am doing the high does fish

oils with my daughter so she is getting 9 gel caps per day (thus also

getting 270 I.U. of Vit. E). Are you giving your son 400 I.U. in

addition to the Vit E in his Nordic Naturals or are you just adding

enough Vit. E to get his total daily intake up to 400 I.U.?

Thank you so much for your post and your inquisitive mind. I am

eternally grateful.

Thank you, Thank you, Thank you!

Kris

On Aug 23, 2006, at 10:00 PM, wrote:

> 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. -

>

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

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

>

> The real facts about the vitamin E death warning...

> Print Report | Add to Favorites

>

> Do you ever feel fed up with all the conflicting health information in

> newspapers and magazines?

>

> This week, you'll see a story about the benefits of taking a certain

> supplement. A week later, you'll read or hear a report about the

> dangers of

> the very same substance, with warnings by an expert to stay away from

> it.

>

> A good example comes from the latest " death warning " about vitamin E.

> According to recent headlines, people could be " risking their lives "

> if they

> take even moderately high doses of vitamin E [1].

>

> To add to the confusion, researchers from Israel now tell us that some

> patients with diabetes can reduce their risk of dying from heart

> disease by

> taking — you guessed it — high doses of vitamin E [2].

>

> This kind of conflicting evidence prompts many frustrated people to

> throw up

> their arms in frustration at the fact that " even the experts can't

> agree. "

> It's easy to become so frustrated and confused that you simply ignore

> it

> all.

>

> Don't throw your vitamin E supplements in the bin just yet. There are

> several important aspects of the s Hopkins study that didn't get

> much

> coverage in the news.

>

> Here's a closer look at what they actually did.

>

> The researchers looked at a number of studies carried out between

> 1993 and

> 2004. All compared vitamin use against a dummy supplement (placebo).

>

> They found that the risk of death did not differ significantly between

> people given vitamin E and those assigned to placebo.

>

> However, the effect of vitamin E differed according to how much was

> used. In

> the low-dose studies, vitamin E was linked with a small reduction in

> the

> death rate.

>

> In the high-dose studies, those who took vitamin E had a 4% increase

> in the

> risk of death. Though this increase was small, it was statistically

> significant.

>

> It was this discovery that generated the headlines.

>

> One problem is that the review included studies where vitamin E was

> taken

> with other vitamins and minerals. The increased risk of death found

> in some

> of the studies could have been linked with these other nutrients. It

> may

> have had nothing to do with vitamin E.

>

> What's more, many of the study groups were people with pre-existing

> chronic

> diseases such as cancer, heart disease, Alzheimer's, Parkinson's and

> kidney

> failure.

>

> Even the editors of the ls of Internal Medicine (the journal

> where the

> study was published) write that the findings may not apply to healthy

> adults.

>

> Dr. Alan Gaby, an expert in nutritional therapies, also points out

> that some

> of the results were complicated by the fact that the vitamin E and

> placebo

> groups were not comparable.

>

> " In one high-dose vitamin E study (Cambridge Heart Antioxidant

> Study), the

> vitamin E group had higher cholesterol levels and significantly

> greater

> percentages of participants with high blood pressure, diabetes,

> cigarette

> smoking, and severe coronary artery disease, compared with the placebo

> group, " says Dr. Gaby.

>

> " Thus, the people taking vitamin E were sicker than those taking the

> placebo, a fact that could account for the slight increase in

> mortality seen

> in the vitamin E group. "

>

> Facts about vitamin E

> There are also several different forms of vitamin E. Read the label

> on a

> vitamin E supplement, and it will probably say alpha-tocopherol

> (pronounced

> al-fa tocko-ferol).

>

> Most of the studies reviewed in the s Hopkins research were done

> using

> the synthetic (dl-alpha-tocopherol) rather than the natural

> (d-alpha-tocopherol) form of alpha-tocopherol.

>

> Natural vitamin E has roughly twice the availability of synthetic

> vitamin E.

> Because of this, you have to take about twice as much of it to get

> the same

> effect [4].

>

> If there is a small negative effect of high-dose vitamin E, it might

> be due

> in part to the use of dl-alpha-tocopherol.

>

> Vitamin E is actually a collective term for eight naturally occurring

> compounds, four tocopherols (alpha-, beta-, gamma- and delta-) and

> four

> tocotrienols (alpha-, beta-, gamma- and delta-).

>

> Concentrations of alpha-tocopherol are higher in wheat germ oil,

> almond and

> sunflower oil; gamma-tocopherol is the major form of vitamin E in

> corn oil

> and soybean oil; levels of tocotrienols are high in rice bran,

> barley, oats

> and palm oil.

>

> Although most research has focused on the potential health effects of

> alpha-tocopherol, the three other tocopherols and four tocotrienols

> are also

> important.

>

> In fact, supplementing with alpha-tocopherol has been shown to reduce

> blood

> levels of gamma- and delta-tocopherol [3].

>

> Although they're usually more expensive than alpha-tocopherol, mixed

> tocopherols are the preferable form of vitamin E, in terms of both

> safety

> and effectiveness.

>

> If you do use a high-dose vitamin E supplement, look for one that

> contains

> mixed tocopherols. Some manufacturers use this term to mean the

> synthetic

> dl-alpha-tocopherol, so you need to read the label closely.

>

> Of course, the fact that some forms of vitamin E are natural doesn't

> mean it

> can be consumed safely in unlimited amounts. Many supplements,

> including

> vitamin C, iron, CLA and CoQ10 — under certain conditions — can have

> negative side effects.

>

> Even plain water has the potential to be harmful [6]!

>

> Based on its blood-thinning effects, there are concerns that vitamin

> E could

> cause problems if combined with medications that also thin the blood,

> such

> as aspirin. In theory, the blood could thin too much, causing bleeding

> problems.

>

> Vitamin E may also enhance the body's sensitivity to its own insulin

> in

> people with type II diabetes [5]. This could lead to a risk of blood

> sugar

> levels falling too low.

>

> If you're taking medication, it would be a good idea to talk with your

> physician before using a high-dose vitamin E supplement.

>

> The bottom line

> One of the main goals of a newspaper or magazine is to sell more

> copies.

> They'll achieve this with a sensational headline that reads something

> like

> " vitamin E death warning " rather than one that accurately reflects the

> findings of a study.

>

> Personally, I use a multi-vitamin and mineral supplement that

> contains 150

> IU of vitamin E (d-alpha-tocopherol succinate). Most days, I also use

> a meal

> replacement supplement containing 30 IU of vitamin E. That gives me

> at least

> 180 IU of vitamin E each day, plus what I get from my diet.

>

> This new research has not convinced me to use less vitamin E.

>

> One study is not really news. Think of it as a single piece of a

> jigsaw

> puzzle. It's only when you put the pieces together by comparing many

> studies

> in a given field that you get an accurate picture of what's really

> going on.

>

> Do you need help burning the fat from your belly or packing muscle on

> your

> chest, shoulders and arms? This site contains everything you need to

> know.

> It will teach you the best ways to get the lean, strong, healthy body

> you

> deserve. Get more FREE fat-burning and muscle-building tips here »

>

> References

> 1. , E.R. 3rd, Pastor-Barriuso, R., Dalal, D., Riemersma, R.A.,

> Appel,

> L.J., & Guallar, E. (2004). Meta-Analysis: High-Dosage Vitamin E

> Supplementation May Increase All-Cause Mortality. ls of Internal

> Medicine, 142

> 2. Levy, A.P., Gerstein, H.C., -Lotan, R., Ratner, R., McQueen,

> M.,

> Lonn, E., & Pogue, J. (2004). The effect of vitamin E supplementation

> on

> cardiovascular risk in diabetic individuals with different haptoglobin

> phenotypes. Diabetes Care, 27, 2767

> 3. Huang, H.Y., & Appel, LJ. (2003). Supplementation of diets with

> alpha-tocopherol reduces serum concentrations of gamma- and

> delta-tocopherol

> in humans. Journal of Nutrition, 133, 3137-3140

> 4. Burton, G.W., Traber, M.G., Acuff, R.V., Walters, D.N., Kayden, H.,

> , L., & Ingold, K.U. (1998). Human plasma and tissue

> alpha-tocopherol

> concentrations in response to supplementation with deuterated natural

> and

> synthetic vitamin E. American Journal of Clinical Nutrition, 67,

> 669-684

> 5. Manning, P.J., Sutherland, W.H., , R.J., , S.M., De

> Jong,

> S.A., Ryalls, A.R., & Berry, E.A. (2004). Effect of high-dose vitamin

> E on

> insulin resistance and associated parameters in overweight subjects.

> Diabetes Care, 27, 2166-2171

> 6. Noakes, T.D. (2003). Overconsumption of fluids by athletes. British

> Medical Journal, 327, 113-114

>

> [ ] Re: Important message you all want to

> read...and share

>

> ,, and everyone.

> That is VERY interesting, and VERY inspiring to hear about ph.

> It makes me want to try Vit. E supplement with my daughter.

>

> I too did a little reading about the signs/symptoms related to vit e

> deficiency. It turns out (according to Merck) Abby has had most of

> them too. (including ophthalmoplegia) If you recall I once posted how

> her eyes made very fast jerky movements. She did this 2x in the

> hospital as a newborn, then again shortly after coming home. When I

> told her pediatrician, he claimed to examine her, and I quote " there

> doesn't seem to be anything wrong "

>

> While reading the signs/symptoms, I continued to look up the Vitamin

> E information. One of the pages I read was from the Hopkins

> Medicine webpage.

> /post?

> act=reply & mess

> ageNum=50746

>

> They claim to have done a study on vitamin E supplentation. And their

> conclusion is high doses, (Over 400 IU) may have a higher overall

> risk of dying. They go on to say most of the people in their study

> are over age 60, and not all were in perfect health.

>

> I only bring this up, because it does concern me, that in effort to

> help, we " might " inadvertantly hurt our children. With your medical

> expertise, maybe you can shed some light on this issue/study.

>

> Please do not take my questions the wrong way. I am certainly not

> trying to disprove your claim, nor am I trying to persuade anyone

> from NOT trying a new option to help our children. I just want

> reassurance.

>

> Thank you..

> Dawn in NJ

>

> In , " kiddietalk "

> <kiddietalk@...> wrote:

> >

> > 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

> > "

[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

> "

[Guest guest]

Ok, you lost me a bit. Do you test for vitamins A, E, D and K through

a standard lab like CPL or Quest? Or is this through a specialized

lab? How much vit E and vit K are you giving? Where do you get Vitamin

K - I've never seen it at Whole Foods or any of my online vitamin

stores. I would love to hear more about this. My kids have both been

on carnitine for long periods of time, and it alone has never helped

their hypotonia.

Wow, I would be amazed if that small bit if vit E in carnaware played

a major part in my daughter's recovery from apraxia!

Please point me to more info about vitamin K and learning disorders.

Thanks!

> > >

> > > 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

> > > "

[Guest guest]

,

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

> > >

> > > 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 .

> > >

>

>

>

>

>

[Guest guest]

,

Are there any known risks to high does of fish oil?? I read in your

post that there can be an increased risk of bleeding. I have not

been able to find anything else about this. I just started my 3.5yo

30lb son on 1 Nordic Naturals ProEFA/day to start, but am reading of

the high doses people go up to. I just want to know what the risks

are, if any, of higher doses for small children.

Thank you,

Dara

>

>

>

> >

> > 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. -

>

[Guest guest]

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.

-

[ ] Re: Important message you all want to

read...and share

Ok, you lost me a bit. Do you test for vitamins A, E, D and K through

a standard lab like CPL or Quest? Or is this through a specialized

lab? How much vit E and vit K are you giving? Where do you get Vitamin

K - I've never seen it at Whole Foods or any of my online vitamin

stores. I would love to hear more about this. My kids have both been

on carnitine for long periods of time, and it alone has never helped

their hypotonia.

Wow, I would be amazed if that small bit if vit E in carnaware played

a major part in my daughter's recovery from apraxia!

Please point me to more info about vitamin K and learning disorders.

Thanks!

> > >

> > > 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

> > > "

[Guest guest]

Hi ,

I just went to GNC and bought their Isomer E vitamin supplement. It says

Vitamin E (d-alpha Tocopherol) 400 IU as the main ingredient. Then

listed below that it says proprietary isomer E blend of d-alpha,

d-gamma, d-delta and d-beta tocopherols. I couldn't find any Vitamin E

supplements that contained just d-alpha and d-gamma.

I'm a little confused. Are there 2 separate products that you are using,

one that has d-alpha and one that is d-gamma? Or did you find one

supplement that contained both of these? Do you think it would be

effective to use this one that is a blend, including the d-delta and

d-beta forms? Do you know if these forms were also in the product you

were using?

Thanks so much for sharing this information with all of us. I'm so happy

to read of all the great results that you've seen.

Thanks again,

Becky McFarland

________________________________

From:

[mailto: ]

Sent: Thursday, August 24, 2006 3:32 PM

Subject: [ ] Digest Number 3022

<http://www.apraxia.cc>

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

< /message/50766;_ylc=X3

oDMTJxOXYyaHY1BF9TAzk3MzU5NzE1BGdycElkAzQyNjcwNQRncnBzcElkAzE2MDAxMjYxNz

EEbXNnSWQDNTA3NjYEc2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTE1NjQ1MTUxNQ-->

Posted by: " " claudiamorris@...

<mailto:claudiamorris@...?Subject=%20Re%3A%20Important%20message

%20you%20all%20want%20to%20read%2E%2E%2Eand%20share>

Thu Aug 24, 2006 4:05 am (PST)

I don't think anyone should be increasing a dose past this without close

supervision of an MD or nutritionalist, and following levels...until we

have

more information. " Do no harm " is key.

I get the alpha " d " tocophorol and gamma from the general health food

store.

There is also an on-line soy free " Dr. Ron's ultra pure vitamin E " . I

have

to look into this product as it combines alpha and gamma, and is soy

free

(but expensiver - more so that the health food store which may be just

as

good). I think its a capsule though - which may be more difficult to get

the

kids to take. There is also a water soluable vitamin E preparation that

the

cystic fibrosis kids take. So still a lot more to learn. Honestly I am

no

expert on this - I literally just started reading up on vitamin E,

symptoms

of deficiency and types of supplements early July. If I had given my

nutritional courses more attention in med school, maybe I would have

recognized that all the signs of vitamin E deficiency sound like apraxia

and

SID. Better late than never.

[Guest guest]

I know about vitamin K -too well.

It's like some horrible back flash for me because in addition to

being diagnosed celiac as a baby and growing up on a GFCF diet that

saved my life...I HAD to take vitamin K as a child because I had

some weird bleeding and bruising thing going on (I had to be rushed

to the hospital a few times I wouldn't stop bleeding if I was cut

and would bruise if you looked at me) and supposedly the vitamin K

helped with clotting.

I was tested for everything and don't have any condition and don't

seem to have a problem with bleeding or even brusing as I grew up -I

seemed to outgrow it.

If anyone says " our children are iron deficient/borderline anemic

and need to eat liver "

(yes that too -can you believe I had to grow up not eating sweets

but eating liver?!)

I'm shutting my computer off for the night! )

=====

[Guest guest]

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

[Guest guest]

In addtion. Its still not enough - but with an additional 400 IU, if you are

going to see results, you will see them.

[ ] Re: Important message you all want to

> read...and share

>

> ,, and everyone.

> That is VERY interesting, and VERY inspiring to hear about ph.

> It makes me want to try Vit. E supplement with my daughter.

>

> I too did a little reading about the signs/symptoms related to vit e

> deficiency. It turns out (according to Merck) Abby has had most of

> them too. (including ophthalmoplegia) If you recall I once posted how

> her eyes made very fast jerky movements. She did this 2x in the

> hospital as a newborn, then again shortly after coming home. When I

> told her pediatrician, he claimed to examine her, and I quote " there

> doesn't seem to be anything wrong "

>

> While reading the signs/symptoms, I continued to look up the Vitamin

> E information. One of the pages I read was from the Hopkins

> Medicine webpage.

> /post?

> act=reply & mess

> ageNum=50746

>

> They claim to have done a study on vitamin E supplentation. And their

> conclusion is high doses, (Over 400 IU) may have a higher overall

> risk of dying. They go on to say most of the people in their study

> are over age 60, and not all were in perfect health.

>

> I only bring this up, because it does concern me, that in effort to

> help, we " might " inadvertantly hurt our children. With your medical

> expertise, maybe you can shed some light on this issue/study.

>

> Please do not take my questions the wrong way. I am certainly not

> trying to disprove your claim, nor am I trying to persuade anyone

> from NOT trying a new option to help our children. I just want

> reassurance.

>

> Thank you..

> Dawn in NJ

>

> In , " kiddietalk "

> <kiddietalk@...> wrote:

> >

> > 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

> > "

[Guest guest]

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!

=====