Re: Holy ^%$%& Vitamin E or

April 15, 2009

Hi,

I am a little late in jumping in this thread but I wanted to be able to do some

research and compile information for parents out there who wish to read up on

their own and formulate their own opinion. First off, for those who are newer

to this board, the whole debacle was around the usage of the product " speak "

which my own child took. I believe I was the first person who posted on this

group inquiring if anyone had noticed seizure activity in their children while

on this product. My daughter had only been on this product for a few days before

she had seizure episodes. Prior to taking this supplement, she had NEVER HAD a

seizure incident. Not too long after my posting, I was contacted by

April 15, 2009

Well, first hand experience surely speaks for itself.

You can get the literature/brochure from SPEAK, atleast you usedto could get it,

which indicates risk of seizures,butit s dowpayed. It used to be on the

website,but Iould not find it in the links any more. (I must wonder why?)

Nonetheless, since my educational knowledge as a nurse has come into play (no

thru Lori's post), I think I will post further on what I know personally about

Vitamin K. Vitamin K supplement are rarely needed uness there has been extensive

damage to the intestinal lining. Vitamin K can be obtained from foods (leafy

greens an example)and other Vitamin K is produced internally in the intestine

(eat a bowl of oatmeal!)

Since a supplement would only be needed in rare instances,any supplement would

exceed the FDA's recommend daily allowance.

itamin K overdoses have been associated with liver damage,anaphylaxis, and even

death.

It is completely up to the individual (orhis/he parent) if they want to take

known risks associated with too much Vitamin K.

I considered SPEAK myself, talked to the neurologist (who did not recommend it,

and followed up with research.

This is what I know, what I have learned, and the information I am presenting to

the group. If anyone wishes to naively call it an opinion, then I think it that

is potentially harmful to a large number of people. As a nurse, I am not willing

to take that risk and say it is not harmful. It is.

You have the information, a testimony from a mom who has used the supplement,

and you can certainly refer to the many sources available to the general public

to confirm this. Or you may simply ask any qualified doctor who has had

experiences with overdoses of Vitamin K.

I hope that everyone here makes good informed choices and gains all the

information from all possible sources before giving any supplement or

prescription medication to their child. You must weigh the risks and the

benefits and decide what " you " can live with because your child will also have

to live with any consequences.

Good Luck to all in making these difficult choices.

-- In , " seeramona " <lorirosen@...> wrote:

>

> Hi,

>

> I am a little late in jumping in this thread but I wanted to be able to do

some research and compile information for parents out there who wish to read up

on their own and formulate their own opinion. First off, for those who are

newer to this board, the whole debacle was around the usage of the product

" speak " which my own child took. I believe I was the first person who posted on

this group inquiring if anyone had noticed seizure activity in their children

while on this product. My daughter had only been on this product for a few days

before she had seizure episodes. Prior to taking this supplement, she had NEVER

HAD a seizure incident. Not too long after my posting, I was contacted by

Geng who told me she had been informed by other parents privately that their

children were experiencing significant medical issues, seizures included. I

immediately stopped giving my daughter " speak " and the seizures has not

reoccurred since then.

>

> I spoke with my daughter's neurologist, first over the phone and then quite

extensively at our appt a few months ago and she said that there are certain

things that can lower the threshold for seizures in children. She could not

specifically attribute it to the high dosage of vitamin e or k in the speak

product but that since there has been no more seizure incidents since stopping

the supplement, it was obvious that there was a direct correlation. She said

that supplements are not regulated and all ingredients are not necessarily

listed so there is no way to know for sure what really is in the product and

what triggered the seizures.

>

> In fact, in discussing what can lower the threshold for seizures, she told me

not to give my child Benadryl (its on my child's medication list to take in case

she has an allergic reaction - she has peanut allergy, the epi pen jr. given

only if respiratory distress). She said that Benadryl is known to lower

threshold for seizures. WHAT????? Sure enough, it is true.

>

> benadryl

> http://www.epilepsy.com/epilepsy/provoke_otc

>

> In fact, in this Epilepsy journal article, it states that " Anecdotal accounts

suggest that some herbal substances may have anticonvulsant effect, but

randomised double-blind controlled trails are lacking. Alternatively many

herbals and dietary supplements may predispose to seizures in individuals

without epilepsy and worsen seizure control in those with epilepsy. "

> and importantly,

> " Seizures have been known to occur in patients taking complementary therapies

when no other cause has been found. "

> http://www3.interscience.wiley.com/cgi-bin/fulltext/118867174/PDFSTART

>

> What I also found in my research is that children with developmental delays

are at risk for having a lower threshold for seizures.

> " Children with developmental disabilities are at even higher risk for seizures

than is the general population.In most children, the pathologic process

responsible for the disability is responsible also for the epilepsy. "

http://professionals.epilepsy.com/page/devdis_childhood.html

>

> Yes, apraxia of speech is considered a developmental delay and no,

developmental delays do not always mean cognitive delays. See the following link

for examples of what are considered developmental delays. DD just means that

your child is not achieving certain milestones on time compared to typical peers

due to a number of reasons

> http://www.firstsigns.org/delays_disorders/other_disorders.htm

>

> If apraxia is neurologically based, then it seems to make sense to me that the

risk of seizures would be higher for my child. So why would I want to give her

something that would trigger this? In researching medicines and supplements

" Most nutritional supplements are, in effect, medications. Probably most of them

have no real effect on seizure control, but they can have side effects and some

may be dangerous. " http://www.epilepsy.com/epilepsy/provoke_nutrition

>

> If you google the following terms; effects of medicine on seizures, effects of

supplements on seizures, what lowers threshold of seizures, you will find tons

of information about known prescriptions and supplements that induce seizures.

That is why it is very important to tell your child's doctor everything you are

giving your child including supplements and herbs. Had my child not

experienced the seizures while taking " speak " supplements, her neuro probably

would not have been that concerned with her taking Benadryl but now we have to

be cautious of any potential risk with all medications.

>

> talked about her son not having typical seizures but instead, severe

headaches and severe regression in speech. Her son quite possibly experienced

hypervitaminosis. However, did you know that seizures are not always presented

by what we think of convulsions? It can manifest itself by in many ways that we

don't think of typical seizure behavior.

>

http://www.uihealthcare.com/topics/medicaldepartments/pediatrics/epilepsy/kinds.\

html

> http://www.epilepsy.com/101/ep101_symptom

> So, was Tanner's severe headaches actually a manifestation of seizure

activities?

>

> What I find very interesting is that when you go to the 'speak' website to

order a complimentary sample of their product, you need to fill out a

questionnaire. One of the questions specifically ask if your child has a history

of seizures. That question has never appeared before and it makes me ponder if

other children experienced this and they need to eliminate those children from

taking their product? Granted, I am sure there are children who are

experiencing great success with that product, but there is no way of knowing

which children are at risk for this lowering of seizure threshold with that

product.

>

> There are a few children who do have a vitamin E deficiency but it is not all

that common. The bottom line is that in the past, this group explored vitamin E

in reasonable amounts with some children experiencing success. However, as

pointed out, there is no credible research on what constitutes safe amounts for

children when giving mega doses of vitamins.

>

> Read, talk to your doctors and make intelligent decisions for your child. It

is too easy to get caught up in a miracle product that can cure your child. It

is going to take a variety of therapeutic avenues to overcome apraxia.

>

> I hope this information was helpful to some of you.

> Lori

>

> >

> > I don't think it's a debate or problem- it's just that new people don't know

what this group has been through for the past few years. I mean this group has

been around for over a decade but vitamin e has only been a hot topic really for

a few years. Prior to that vitamin E came up because some parents didn't want

soy -some complained (!) when Nordic raised the vitamin E in each ProEFA

capsule from 8 IUs to 15 IUs because of the research that showed supplementation

with fish oil over time can create a vitamin E deficiency.

> >

> > could be correct about the seizures being from the vitamin K but it's

just her opinion and she could also be wrong. As far as any professional I've

spoken to (and of course I called many of the researchers behind the studies)

there are so many unknowns. Besides -as far as I know Tanner never had a

seizure -but he had many other side effects including the headaches and most

noticeable to all -severe and dramatic regressions in speech back to groping

where he opened his mouth and nothing at all came out. It was a nightmare.

> >

> > On smaller amounts of vitamin E at the time many of us too were very excited

about surges we saw in sensory and in speech -but that again could have to do

with the fact that this group in one where we put our children on fish oils and

it is now known that mere supplementation of fish oils over a period of time can

create a deficiency.

> >

> > Does that mean that we need high dosages? Does that mean we need to

supplement for a few days, weeks, months and then stop? Nobody knows. All I'm

trying to point out is that it's an unknown road and in the history of this

group one that we still have not reached the bottom of yet. Until Evoni is

resolved there are a few of us that just want to point out to be aware that

there many be risks that some medical doctors don't know about- which is why I

posted the medical reports I did. I tried to tell everyone that this group was

using a 1/1 ratio of alpha to gamma for the most part- and most only were using

200/200 capsules because if you check the archives that was what I was using and

posted about.

> >

> > I'm sure means well -but like the experts she would be limited by the

research out there- and in regards to children with mega dosages of vitamin E

-even vitamin E alone -there is little. I also can tell you that knowing what I

do now about vitamin E after reading the reports I no longer feel comfortable

with any dosage that would in any way be considered high. I'm sure what you are

using -100 IUs is not considered high -but you need to keep in mind there is

vitamin E in the fish oil and any other foods or vitamins to keep track of fat

soluble vitamins. I can tell you that without vitamin K my son Tanner regressed

when I tried him on higher dosages of alpha over the gamma. Check the archives

as it's all there. And I tried that three times. Tanner needed a 1/1 ratio.

There were exceptions to the rule where perhaps fish oils didn't work for them

and vitamin E did. Three kids like that? Four? Out of thousands? To me based

on what I saw the best thing would be to start with the basics -the fish

oil...and go from there slowly. But at least all of you get to know there could

be side effects and will know what to look for. When my son Tanner started

vomiting and had severe diarrhea- I just thought it was something he ate. When

he complained of headaches I couldn't imagine why. When he begged me for an

aspirin I didn't realize that could be dangerous based on everything else. When

he would then sleep for hours and hours -through dinner...I and nobody else

knows what happened to my son Tanner. All I know is that I had to re teach him

even basics sounds that he had known since 3 years old- even the sound " b " You

see...I didn't take the regression seriously because if you stop the fish oils

or use the wrong formula most of our children regress. No biggie -you put them

back on the right formula of fish oils and poof they are back to normal.

> >

> > That's what we thought would happen -including my son Tanner. Tanner was a

HUGE fan of vitamin E too -and he wanted to keep trying it. It broke his little

heart as well. Don't believe everything you read here or anywhere. It's your

child...I typically never let my guard down to just take advice from anyone

-even a professional I trust -without question. I don't know why I did with

this one...but like most I thought -it's vitamin E -it's healthy.

> >

> > It probably still is- in moderation. And is wheat germ vitamin E healthier

as Jane asked -I don't know.

> >

> > =====

>

April 15, 2009

I have many friends that are medical professionals. It's my opinion that

an opinion is an opinion even if it's from a PhD MD. So saying it's your

opinion is not an attack against you -and it's not naive as you state -it is

your opinion. It's clear to me it's still your opinion that the side effects

and the regressions that I and others noticed in our children is the result of

the vitamin K even though I explained that my son Tanner who was not on any

vitamin K regressed when two separate times I raised the alpha vitamin E over

the gamma prior to (it that shall not be named) that supplement that had the

vitamin K. I could archive it.

Somehow the focus of the emails became just about the seizures but once again

all one has to do is check the archives or the link section to see that seizures

were just one of the side effects.

/links/Pharma_Omega_Spea\

k_reports_from_group_001224703760/

And I do appreciate all Lori wrote and believe she shared some valuable

information on seizures. But I don't know if I'd say Tanner has a low seizure

threshold. My son Tanner at 11 months old had 2 weeks of very high fevers as

written about in The Late Talker -but no seizures. Could Tanner have had a

seizure that nobody noticed say while he was sleeping -of course -in theory

anyone could. The point is to me however we've had this group for a decade and

never before this one treatment did we hear and observe the type and amount of

dramatic regressions and side effects. The older children, teens and one adult

() were able to complain to us about the stomachaches, headaches,

" swooshing in the head " or burning in the mouth- some of the little essentially

nonverbal child just screamed -high pitched (kind of sounded like the DSI

breakdown) screams non stop. So perhaps that was the vitamin K as you believe.

I posted research articles on hypervitaminosis E. If you still want to try the

vitamin E again you or anyone else is welcome to. Unlike me you'll at least

know the signs of hypervitaminosis I posted from the experts.

What type of nurse are you? As I posted my Aunt has her PhD in nursing and used

to teach at LIU. I have a great deal of respect for my Aunt as well as all my

doctor or nurse friends but once again -just because someone is a medical doctor

(or nurse) does not automatically make their opinion correct.

We have one child -Evoni- who is still regressed to where she can't hold

utensils or walk anymore and still having repeated daily seizures -to me that's

beyond frightening as it's fully possible that the attempted treatment created a

far more dramatic and severe condition than the original one. Her mother who is

educated, intelligent, and with an influential position career wise -just

wanted to try this new supplement featured around the vitamin e. All I'm saying

is that in my opinion- vitamin K aside - vitamin E is still a huge unknown,

especially in children (no less preschool children) I posted upper tolerable

levels where parents can look for their child's age. The following is

information I wish someone shared with me- but just one of the things I wish was

shared with me about vitamin E. I shared all of them in my last email. Take or

leave the information you believe (in your opinion) is best for your child -and

share with your child's doctor.

The Food and Nutrition Board of the Institute of Medicine

Table 4: Tolerable Upper Intake Levels (UL) of vitamin E for Children and Adults

[5]

http://ods.od.nih.gov/factsheets/vitamine.asp#h7

=====

April 16, 2009

I just read the last few posts for this Vitamin E thread-

My son is 3 and on the link I think it said 9 IU was the tolerable dosage.

I give my son 2 PRO EFA and 1 PRO EPA fish oil capsules a day and a multi

vitamin - total dosage is 60 IU.

I can't imagine taking my son off the fish oil. We had to because I ran out for

a week before the new pills came and his sensory was really out of control

without it.

Just wanted to confirm - this dosage is now seen as a cause for concern because

of the potentially harmful effects of the Vit E? My son's pediatrician knows my

son is on fish oil - but not the exact dose.

Thanks,

Jodi

>

> I have many friends that are medical professionals. It's my opinion

that an opinion is an opinion even if it's from a PhD MD. So saying it's your